REPORT +rgeon General's Workshop on Prevention of Disability from Arthritis U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE Public Health Service Division of Chronic Diseases Diabetes and Arthritis Program Washington, D.C. 20201 .---. BETHESDA 14, MD. Background The need for a national conference on the prevention of disability from arthritis was first described in a long-range plan- ning document that was prepared in the fall of 1963 by the staff of the Diabetes and Arthritis Program, Division of Chronic Diseases, U. S. Public Health Service ( PHS) . The document noted that, although arthritis is a major public health problem, the dimensions of the problem are not widely recognized. And it stressed that, al- though therapeutic measures for dealing with the problem are far from ideal, pro- cedures that diminish disability, particu- larly when applied in a timely fashion, have been devised and should be made available to the millions of Americans who of the Conference suffer from disabling arthritis. AA;riii;ne 19~ representatives of the and Rheumatism Foundation (now, The Arthritis Foundation), the National Foundation, the American Rheu- matism Association, the National Insti- tute of Arthritis and Metabolic Diseases (PHS), and the Diabetes and Arthritis Program (PHSI met in San Fran- cisco to give further consideration to the need for a national conference on arth- ritis. At the conclusion of this meeting, it was the consensus of the group that such a conference was vitally needed. Participants submitted a recommendation to this effect to the Surgeon General and offered to serve as a steering committee to plan the confer- ence. On the basis of this recommendation, the Surgeon General agreed that a confer- ence should be held and accepted the par- ticipants' offer to serve as a Steering Com- mittee. This Committee, later enlarged, met several times during 1964. In these subsequent meetings, the Steer- ing Committee determined that the empha- sis of the deliberations should be on com- munity health services, as opposed to basic research. Therefore, the title of the Con- ference, THE SURGEON GENERAL'S WORKSHOP ON PREVENTION OF DIS- ABILITY FROM ARTHRITIS, reflected this emphasis on prevention. The Steering Committee also determined that the objec- tives of the conference should be to: 1. Assess the problem 2. Assess the resources to meet the prob- lem 3. Determine gaps between needs and resources 4. Recommend action to close the gaps The Workshop was held May 5-8, 1965, at Airlie House, Warrenton, Virginia. About 100 persons participated. Repre- sented were every. health profession, medi- cal economics, science writing, health and medical insurance, and other specialties. To accomplish intensive discussion, the total group was divided into seven Work- shops : 1. Public Education and Information 2. Diagnosis and Treatment Facilities 3. Long-Term Control and Management 4. Professional Education 5. Clinical Investigation and Training 6. Voluntary and Public Agency Activ- ities and Programs 7. Socioeconomic Aspects (Financial Resources 1 Each Workshop reported back to the total group and each report was discussed by the total group. This report is a summary of the Work- shop reports. Although it represents a con- sensus of the total group, no individual participant or agency is necessarily in agreement with the total report; and it should not be inferred that any individual participant identifies himself with the report. Conference Workhop 1 d Participants PUBLIC EDUCATION AND INFORMATION William S. Clark, M.D., CHAIRMAN President The Arthritis Foundation WORKSHOP 1 William S. Clark, M.D., Chairman WORKSHOP 2 Ephraim P. Engleman, M.D., Chairman WORKSHOP 3 1212 Avenue oj the Americas New York, New York Helen C. Anderson, R.N. Associate Editor American journal of Nursing 10 Columbus Circle New York, New York Theodore B. Bayles, M.D. Currier McEwen, M.D., Chairman WORKSHOP 4 Howard F. Polley, M.D., Chairman WORKSHOP 5 John L. Decker, M.D., Chairman Director oj Research Robert B. Brigham Hospital 125 Parker Hill Avenue Boston, Massachusetts Adelia M. Beeuwkes Projessor, Public Health Nutrition School oj Public Health The iiniversity oj Michigan Ann Arhor, Michigan " VIC William D. Robinso ""RKSHOP 6 James L. Curran n, M.D., Chairman Director, Dept. oj Public Injormation The Arthritis Foundation 1212 Avenue oj the Americas WORKSHOP 7 New York, New York Ronald W. Lamont-Havers, M.D., Chairman REVIEW WORKSHOPS l-7 Cornelius Traeger, M.D. Mr. Pierre C. Fraley Chester Springs Pennsylvflnia Harold T. Furrst, M.D. Assistant Commissioner jar Preventable and Chronic Diseases Department oj Health, City of New York 12.5 Worth Street New York, New York Mr. Charles E. Hovorka Executive Director, The Arthritis Foundation Southern Calijornia Chapter 8576 Wilshire Boulevard Beverly Hills, Calijornia J. Stewart Hunter Assistant to the Surgeon General jGr In formation U.S. Public Health Service Washington, D.C. Ralph F. Jacox, M.D. Department of Medicine School of Medicine and Dentistry The Ilnivrrsity of Rochester 2(i Crittenden Boulevard Rochester, New York Mr. David R. Preston 8 Washington Avenue Westport, Connecticut Elam C. Toone, Jr., M.D. Department of Medicine Medical College of Virginia Richmond, Virginia Ifiawatha B. Walker, Ph. D. Associate Projessor, Department oj Health Education School oj Public Health 1 inivcrsity oj North Carolina Chapel Hill, North Carolina Mr. Victor Wartofsky Injormation Oficer, National Institute of Arthritis and Metabolic Diseases National Institutes of Health (PHSI Bethesda, Maryland `Thomas E. Weiss, M.D. Department oj Internal Medicine Ochsner Clinic 1514 Jeflerson Highway New Orleans, Louisiana 4 work4?hop 2 DIAGNOSIS AND TREATMENT FACILITIES Ephraim P. Engleman, M.D., CHAIRMAN Head, Arthritis Clinical Study Center and Rheumatic Disease Group University of California Medical Center San Francisco, California Roy M. Acheson, D.M., Sc.D. Professor of Epidemiology and Medicine Dere;[yt of Epidemiology and Public Yale University School of Medicine New Haven, Connecticut Mrs. H. Marie Callender (R.N.) Associate Director, Division oj Chronic Disease and Adult Health County oj Westchester, Dept. of Health County Ojlice Building White Plains, New York Morris F. Collen, M.D. Director, Medical Methods Research The Permanente Medical Group 1924 Broadway Oakland, California Miss Mary E. Davis Staff Associate American Public Welfare Association 131.3 East 60th Street Chicago, Illinois David J. Hamerman, M.D. Department oj Medicine Albert Einstein College oj Medicine Yesh.iva University Bronx, New York Dr. lrvin E. Hendryson 1750 Race Street Denver, Colorado Miss Mary L. Hemmy Executive Director The Benjamin Rose Institute Cleveland, Ohio Charles Ragan, M.D. First Medical Division Bellevue Hospital 462 First Avenue New York, New York Guy F. Robbins, M.D. Memorial Center for Cancer and Allied Diseases 444 East 68th Street New York, New York Cecil G. Sheps, M.D. General Director Beth Israel Medical Center 10 Nathan D. Perlman Pkace New York, New York Ralph J. Wedgwood, M.D. Projessor and Chairman, Department o j Pediatrics University of Washington Seattle, Washington Workshop 3 LONG-TERM CONTROL AND MANAGEMENT Currier IMcEwen, M.D., CHAIRMAN Department oj Medicine New York Univ. Medical Center 550 First Averme New York, New York Martin H. Acker, Ph. D. Associate Projessor and Coordinator, Counselor Training School oj Education University oj Oregon Eugene, Oregon Sterling B. Brinkley, M.D. Program Services Vocational Rehabilitation Administration Dept. oj Health, Education, and Welfare Washington, D. C. Mrs. Louise Broderick Regional Vice President American Nursing Home Association 2445 Broadway San Diego, Calijornia Mrs. Joy C. Cordery American Occupational Therapy Assoc. Hospital of the Medical Research Center Brookhaven National Laboratory Upton, New York Edward F. Delagi, M.D. Associate Professor Department of Rehabilitation Medicine Albert Einstein College of Medicine Yeshiva University New York, New York 5' Robert B. Duthie, M.D. Professor of Orthopaedic Surgery and Orchopaedic Surgeon-in-Chief Strong Memorial Hospital Univ. of Rochester School of Medicine Rochester, New York Leonard D. Fenninger, M.D. Medical Director Strong Memorial Hospital Uniu. of Rochester School of Medicine Rochester, New York Miss Evelyn M. McNamera Chief Social Work Consultant The National Foundation 800 Second Avenue New York, New York Miss Catherine Nelson Department of Nursing Education Teachers College, Columbia University 121sc Street and Amsterdam Avenue New York, New York Mrs. Beth Loggins Roberts 1515 Redondo Drive Killeen, Texas Harold S. Robinson, M.D. Medical Director, Medical Centre Canadian Arthritis and Rheumatism Society 900 West 27th Avenue Vancouver, British Columbia Clarence A. Tinsman, M.D. Chief. Heart and Metabolic Diseases Section D&ion of Chronic Diseases Bureau of Special Health Services Pennsylvania Department of Health Harrisburg, Pennsylvania G. Donald Whedon, M.D. Director, National lnstitute of Arthritis and Metabolic Diseases 6 National Institutes of Health (PHSI Bethesda, Maryland Workshop 4 PROFESSIONAL EDUCATION Howard F. PoBey, M.D., CHAIRMAN President, American Rheumatism Association The Mayo Clinic Rochester, Minnesota John H. Bland, M.D. Director, Rheumatism Research Unit Department of fi4edicine llniv. of Vermont College of Medicine Burlington, Vermont Alfred Jay Ballet, M.D. Associate Professor, Department of Preventive Medicine llniv. of Virginia School of Medicine Charlottesville, Virginia Alfred A. Burr, Jr., R.P.T. Departm.ent of Medicine New York Ilniv. School of Medicine New York, New York Evan Calkins, M.D. Buflalo General Hospital 100 High Street Buflalo, New York John L. Caughey. Jr., M.D. Associate Dean, School of Medicine Western Reserve flniversity Cleveland, Ohio Lillian E. Chabala, R.P.T. Consultant, Division of Professional Service American Physical Therapy Association New York, New York Sidnev Cleveland. Ph.D. / Chief. Psychology Service Veterans Administration Hospital Housron. Terns N. L. Gault, Jr., M.D. Associate Dean, College of Medical Scic University of Minnesota Minneapolis, Minnesota Amos N. Johnson, M.D. President-elect American Academy o/ General Practice Garland, North Carolinn Phil K. Manning, M.D. Associate Dean, Postgraduate Medical Education University of Southern California Los Angeles, California Miss Martha E. Schnebly t0.T.R.) Director of Occupational Therapy Institute of Physical Medicine and Rehabilitation New York University Medical Center New York, New York Gladys E. Sorensen, Ed.D. Professor of Nursing College of Nursing University of Arizona Tucson, Arizonn Mrs. Dorothea F. Turner Editor, journal of the American Dietetic Association 620 North Michigan Avenue Chicago, Illinois John Robert Ward, M.D. Associate Professor of Medicine Chief. Arthritis Division Salt Lake County General Hospita) Salt Lake City, Utah hforris Ziff. M.D. Department of Internal Medicine Southwestern Medical School The llniversity of Texas Dnllns. Texas wces Workshop 5 CLINICAL INVESTIGATION AND TRAINING John L. Decker, M.D., CHAIRMAN Chief, Arthritis & Rheumatism Branch National Institute of Arthritis & Metabolic Diseases National Institutes of Health IPHSI Bethesda, Maryland Earl J. Brewer, Jr., M.D. Assistant Professor of Pediatrics Baylor llniversity College of Medicine Director, Arthritis Clinic Texas Children's Hospital Texas Medical Center Houston, Texas Alan S. Cohen, M.D. Associate Professor of Medicine Director, Arthritis and Connective Tissue Disease Section Boston University Medical Center Boston, Massachusetts Alexander B. Gutman, M.D. Director, Department of Medicine The Mount Sinai Hospital New York, New York Donald Mainland, M.D. Professor oj Medical Statistics New York University College of Medicine 112 East 19th Street New York, New York Alfonse T. Masi, M.D. Assistant Professor Department of Epidemiology The Johns Hopkins University School of Hygiene and Public Health Baltimore, Maryland Sanford Meyerowitz, M.D. Department of Psychiatry University o/ Rochester School of Medicine and Dentistry 260 Crittenden Boulevard Rochester, New York William M. Mikkelson, M.D. Department o/ Internal Medicine llniuersity of Michigan Medical Center Ann Arbor, Michigan Robert L. Preston, M.D. Clinical Professor o/ Orthopedic Surgery Rheumatic Discuses Study Group New York University College of Medicine New York, New York Robert D. Ray, M.D. Department of Orthopaedic Surgery University of lllinois Medical Center Chicago, Illinois John B. Redford, M.D. Chairman, Department of Physical Medicine and Rehabilitation Medical College of Virginia Richmond, Virginia Robert Rosengarten, M.D. Department oj Medicine New York Univ. College of Medicine New York, New York Lawrence E. Shulman, M.D. Associate Professor of Medicine The johns Hopkins Hospital 725 North Wolfe Street Baltimore, Maryland Gene H. Stollerman, M.D. Professor and Chairman Department of Medicine University of Tennessee Memphis, Tennessee Workshop 6 VOLUNTARY AND PUBLIC AGENCY ACTIVITIES AND PROGRAMS William D. Robinson, M.D., CHAIRMAN Prolessor and Chairman Department of lnternal Medicine University Hospital University of Michigan Medical Center Ann Arbor, Michigan Paul J. Bilka, M.D. 500 Physicians and Surgeons Building Minneapolis, Minnesota Benjamin T. Burton, Ph. D Associate Director for Program Analysis and Scientific Communication National Institute of Arthritis and Metabolic Diseases National Institutes of Health (PHS) Bethesda, Maryland Mr. James M. Ensign Director of Professional Relations Blue Cross Association 840 North Lake Shore Drive Chicago, Illinois Mr. Benjamin Fogel The Arthritis Foundation 1212 Avenue of the Americas New York, New York Richard H. Freyberg, M.D. Director, Department of Rheumatic Diseases Hospital for Special Surgery Cornell University Medical College New York, New York Mr. Thomas E. Hanrahan Secretary, Council on Voluntary Health Agencies American Medical Association 535 North Dearborn Chicago, Illinois 7 Robert F. Hansen, M.D. Regional Chronic Disease Consultunt, IY Public Health Service 50 Seventh Street, N. E. Atlanta, Georgia William S. Jordan, Jr., M.D. Projessor and Chairman, Department of Preventive Medicine Univ. of Virginia School of Medicine Charlottesville, Virginia Mr. Alfred Moran Executive Director New York Chapter, Arthritis Foundation 432 Park Avenue South New York, New York John S. Neil& M.D. Director, Hillsborough County Health Department Tampa, Florida Mildred C. J. Pfeiffer, M.D. Director, Division of Planning Bureau of Planning, Evaluation and Research Pennsylvaniu Department of Health Harrisburg, Pennsylvania Mack I. Shanholtz, M.D. State Health Commissioner Department of Health Richmond, Virginia Morton Thompson, Ed. D. Director, Consulting Service on R for the III and Handicapped National Recreation Association 8 West Eighth Street New York, New York Miss Sarah Van Buskirk (R.N.) Executive Director Visiting Nurse Association of the District of Columbia Washington, D. C. 8 Workshop 7 SOCIOECONOMIC ASPECTS ( FINANCIAL RESOURCES) Ronald W. Lament-Havers, M.D., CHAIRMAN Associate Director, Extramural Programs National Institute oj Arthritis and Metabolic Diseases National Institutes of Health (PHS) Bethesda, Maryland Mrs. Edith S. Air Director, Division of Community Resources Health Insurance Plan of Greater New York 625 Madison Avenue New York, New York Mrs. Dorothy P. Rice Health Economics Branch Division of Community Health Services U.S. Public Health Service Washington, D. C. Glenn hf. Clark. M.D. Dean of Hosoital A flairs Univ. 01 Tennessee "Medical School 860 Madison Avenue Memphis, Tennessee Donald F. Ilill, M.D., F.A.C.P. President, South Western Clinic and Resrarch Institute, Inc. Tucson. Arizonu Mrs. Susan K. Kinoy Project Director, Kingsbridge Neighborhood Project on Aging 900 Grand Concourse, Suits 201 Bronx, New York Robert H. Manheimer, M.D. Medical Director, New York Chapter Arthritis Foundation 432 Park Avenue, South New York, New York A. B. Price, M.D. Head, Section of Health Facilities Division o/ Health Services State Department of Health Olympia, Washington -Milton I. Roemer, M.D. Professor oj Public Health School of Public Health University of California at Los Angeles Los Angeles, California Jean Stair, Ed. D. Professor of Public Health Nursing Western Reserve University 2063 Adelbert Road Cleveland, Ohio J. Sydney Stillman, M.D. Robert Breck Brigham Hospital 125 Parker Hill kvenue Boston, Massachusetts Mr. Thomas M. Tierney Executive Vice-President Colorado Blue Cross 244 University Boulevard Denver, Colorado XIr. Elijah L. White Assistant Chiej, Division of Health fnferoiew Statistics National Center for Health Statistics U.S. Public Health Service Washington, D. C. The Problem of Preventing Disability f rom Arthritis The crippling effect of arthritis on the citizens of this country has created an eco- nomic and sociologic problem that can no longer be ignored. Arthritis is the number one crippler in the United States. And the National Center for Health Statistics (PHSI recently reported that arthritis ranks second only to heart disease as the leading cause of limitation of activity for persons who suffer from chronic disability. The physical ravages of arthritis impose great economic and social burdens on all members of society. Arthritis gradually withdraws from productive activity large numbers of otherwise capable people. The latest estimate of the number of persons in the United States who report that they have arthritis or rheumatism is now 12,668,OOO. A more dramatic indication of the physi- cal waste from arthritis appears in data that show that 3,300,OOO arthritics in this country maintain, during home interview, that they suffer limitation of activity be- cause of arthritis. About 700,000 report that they are unable to work, keep house, go to school or engage in most recreational activities (see Table A, page 10). Economic Problem. The total cost of arthritis to the public has not been deter- mined. That it is substantial is indicated, in part, by a 1962-63 survey of recipients of public assistance under the program of aid to the permanently and totally disabled. Of the more than 500,000 persons who were receiving aid under this program, an estimated 33,000, or 6.6 percent, had ar- thritis as their primary impairment. At least 17,000 additional recipients had arthritis as their secondary impairment, for a total of 50,000 recipients with primary or sec- ondary impairment. Since the average payment in this program is approximately i $78.00 per month, or $948 per year, a total of $47 million was paid annually to the 50,000 recipients. To compound this economic tragedy, arthritis accounts for over 12 million work- 10 loss days per year. In terms of productiv- ity, the loss to the economy is estimated to be $520 million a year. Loss of earning power, coupled with the Table A Number and percent distribution of persons with mthritis or rheumatism, by type of usual activii status, and by degree of activity limitation, United States, July 196LJune 1963. (cfvilian noninstiinal population) Type of usual activity end degrw of activfty limitation Number parsons (in thousends) Percant distribution Total Usual activity status: Preschool or school age Working Keeping house ., Retired Other or unknown " Degree of activity limitation due to arthritis: Limited, total Unable to carry on major' activity Limited in major activity Not limited in major activity, but other- wise limited None, total' 12,668 100.0 4.0:; 0.4 32.2 5,926 46.8 1,991 15.7 615 4.9 3,300 26.0 697 5.5 1,888 14.9 714 5.6 9,368 74.0 1 Refers to ability to work. keep house, or engage in school or pm-school activities. Note: Does not include persons in nursing homes. Source: Unpublished data. and Chronic conditions and activity limitation, United States, July 1961.June 1963. Estimated annual avenge. U. S. Depart- ment of Health. Education, and Welfere. Public Health Service Publication No. 1000~Series 10. No. 17. Mey 1965. Wesh- ington: U. S. Government Printing Office. high costs of treatment and care, often leads the victim of arthritis to economic dependence upon other members of the family or upon community agencies. This Table B Estimated annual work productivity losses, benefit payments, and expenditures due to arthritis. Total Work productivity loss, total Among arthritics who work, but lose time because of the arthritis $220,000,000 Among arthritics who are unable to work and who re- ceive disability bene- fits (minimal) $300,000,000 Benefit payments to arthritics, total (minimal) From Old.Age, Sur- vivors, and Disabil- ity Insurance, Social Security Adminis- tration $ 85,000,OOO From Aid to the Permanently and Totally Disabled, Welfare Administra- tion $ 47,000,000 Nonprescription drugs (except aspirin) Physicians' visits Hospitalization Other: Prescription drugs Aspirin Physical therapy Certain services in doctors' offices Nursing home care Care in private homes Private insurance benefits Federal, State, and local income taxes lost $1,297,000,000 $ 520,000,000 $ 132,000,OOO $ 435,000,000 $ 150,000,000 $ 60,000,OOO ? ? ? ? ? ? ? ? costs the public money. Although the true figure is not known, arthritis is estimated to cost the U.S. economy over a billion dollars a year. Not counted in this figure Table C Number of persons per 1,000 civilian non- instiiutional population with activity limitation due to arthritis or rheumatism, by family income and age, United States, July 196LJune 1963. Persons with activity limitation due to Total arthritis or meumatism Annual family population Number Per 1.000 income end age (in thousands) (in thousands) population Total 3,300 181964 I 18.1 Under 45 years 128,658 327 2.5 45 years and over 53,306 2,973 55.8 Under $4,000 56,390 2,033 36.1 Under 45 years 34,897 114 3.3 45 years and over 21,493 1,919 89.3 $4,000 and over 115,056 1,083 9.4 Under 45 years 87,299 200 2.3 45 years and over 27,757 883 31.8 Income unknown 10,518 184 17.5 Under 45 years 6,463 13 2.0 45 years and over 4.055 171 42.2 Source: Chronic conditions and activity limitations, United States. July 1961.June 1963. Estimated annual ewrego. U. S. Department of Health. Education. end Welfare. Public Health Service Publication No. 1000.Series 10. No. 17. May 1965. Washington: Ll. S. Gowrnment Printing Office. are the costs of prescription drugs, aspirin, certain services in doctor's offices, nurs- ing home oare, care in private homes, pri- vate insurance benefits, and Federal, State, and local income tax losses (see Table B, page 10). Of the $435 million that is spent annually for medications for arthritis, $250 million is wasted by arthritics on products that are falsely advertised or grossly misrepre- sented. Frequently, quackery flourishes because the physician who first sees the arthritis patient is not trained to cope adequately with the problem. In addition, public and private organizations do not have the resources to counter the promo- tion of fraudulent remedies. In lieu of con- crete information about arthritis, the suf- ferer, believing that nothing can be done, wanders aimlessly into the pit of quackery. When he does seek the aid of a knowledge- able physician, his disease may have pro- gressed beyond the point at which effective measures might have been applied. Growing Problem. Since arthritis lacks the virulence to kill, prevalence rises with age. Victims of arthritis may become crippled, disabled, and wracked with pain, hut they continue to live. Arthritis has its greatest impact on the The battle that the crippled arthritic lower income groups. As family income must wage to maintain his levels of reserve goes down, the percentage of arthritis and, and adaptability against the onslaught of the percentage of arthritics in the disabled his disease has profound meaning for all group, goes up. responsible members of society. A comparison of persons with limitation of activity by family income and age in- dicates that arthritics who are over 45 years of age with family incomes under $4,000 have even more limitation of activity than those who are over 45 years of age with incomes over $4,000 (see Table C, page 10). It can be said that arthritis is asso- ciated with lower income, regardless of age, although it is also associated with in- creasing age. Something Can Be Done. The princi- pal problem in preventing disability from arthritis is that of decreasing the interval of time between the patient's first symp toms and the initiation of comprehensive treatment and care. Decreasing this inter- val is, in part, a matter of patient and public education. Delay in seeking proper care speeds crippling; the informed patient will not delay. Of perhaps more significance, however, is the related problem of making the pa- tient's first medical contact more effective in leading him to prompt and adequate care. This involves the basic training of the physician and the postgraduate efEorts that must be made if the practicing physi- cian is to be kept up-to-date in the field of arthritis. Also, it implies the availability of resources for early and accurate diag- nosis and the adequacy of facilities that will provide total or comprehensive medi- cal care that is adapted to the needs of the individual patient. Psychological and Sociological lm- pact. While our society manifests a strong consciousness of responsibility for the handicapped and disabled, it nevertheless places emphasis on youth, activity, and achievement-values that are hardly com- patible with a long-term crippling disease. When crippling arthritis strikes, the psy- chological and sociological stresses that twist and tear at the patient and at all who must suffer with him are so great, both in magnitude and in duration, that they defy quantitative measurement. 11 Unfortunately, public education activ- ities, professional training programs, diag nostic resources, and adequate care facilities are, at present, insufficient. This must change. Something can be done for the arthritic. It can be done now, if society is willing to undertake the task. In the prevention of disability from arthritis, there is one fact that has been repeatedly demonstrated; there is one point on which virtually all workers in the field agree: The early initiation of comprehen- sive treatment and care activities, including hospitalization, when necessary, and em- bodying subsequent and continuing med- ical and social support, is essential to the prevention of disability from arthritis. Severe crippling can be prevented. In seven out of ten cases, victims of rheuma- toid arthritis can be kept out of the bed or wheelchair. They can be helped to lead a useful and productive life. For this reason, it is of vital importance that com- munity resources be augmented substan- tially and that they be brought to bear early in the course of the disease, rather than later, as is too often the case at the present time. 12 Chronic Cripplers Excluded. For too long, the public, professional health work- ers, and statesmen have been concerned with diseases that kill, to the exclusion of the chronic crippling diseases. As a result, much progress needs to be made. The ex- cellence of current, short-term, inpatient, acute-problem studies has not been dupli- cated in outpatient work with chronic dis- eases. Clinical work and planning, which could include a comprehensive program of patient education, is inadequate at many of our better medical schools. Facilities for early hospitalization for patients who would benefit from such care are fre- quently inadequate. There are too few comprehensive care programs, which could serve as models of educational training of medical students, physicians, and other professional personnel, too few clinics, too few general hospitals, nursing homes, and home care programs, which are capable of dealing with the specific needs of the arthritic, and too few interested health professionals. With respect to professional education, recruitment, support, and training of both medical and allied health professionals is inadequate. The sparse or nonexistent training in rheumatic diseases in the cur- ricula of schools for associated profes- sional personnel or in the postgraduate education that is offered to these personnel contributes, substantially, to the present desperate shortage of physical therapists and to the scarcity of other health workers -all of whom should be instrumental in providing optimal care and education for arthritics. In the training of physicians, the orientation of medical undergraduate experience is toward acute, rather than chronic. illness. Needs Are Great. The prevention of dis- ability and the restoration and maintenance of function require the long-term services of an expensive team of specialists. The facilities that such a team requires are pro- portionately costly, and they range across a broad spectrum-from acute care beds in a hospital to special devices in a pa- tient$s home. There is much to be learned about this complex and costly disease, arthritis. If new knowledge is to be developed and dis- seminated, postgraduate training for physi- cians who are already in practice is imperative. Associated professional per- sonnel must be increased in number and better trained to deal with the problem of crippling arthritis. And medical students must be exposed to the challenge of this provocative disease. In addition, the victim of arthritis, his family, and the general public must be set free of the notion that nothing can be done about this disease. Fundamental research must be contin- ued, but a comparable effort must be mounted in the clinical area. Exemplary care centers should be supported as the focus of study, teaching, and consultation. And, of particular importance, the com- munity must be helped to organize and to support facilities that will provide a full range of services to the chronically ill, in- cluding the arthritic. Everyone who is concerned with health care must be im- bued with the philosophy of a team effort, of a persistent and concerted attack, which will not falter in the face of discourage- ment or disappointment. It must not be forgotten that the needs of millions of Americans will be met only if society de- cides to redirect its investment, to mold public and private resources into a force that will halt the crippling of arthritis and its impact on the Nation. Recommendations 1. That the Surgeon General designate arthritis a major health threat that must be surmounted. Arthritis is the foremost crippler in the United States. Its impact on the citizens of this country is staggering. Though rarely fatal, arthritis far exceeds the killer diseases in terms of human suffering, mis- ery, and privation. In addition, it imposes on the economy the burden of providing for citizens who have been permitted to become crippled and unproductive. In our society, this burden is accepted. However, since the immense costs of arthritis to the Nation can be prevented, further squander. ing of these human resources is neither economically nor morally justified. Ar- thritis is a major threat to the health of the citizens of the United States. As'such, it warrants a concerted effort to overcome it by all available means. 13 2. That facilities for the diag- nosis and treatment of ar- thritis be maintained, im- proved, and created ac- cording to geographic, population, and commu- nity needs. It has been shown that the early initia- tion of comprehensive treatment and care activities is essential to the prevention of disability from arthritis. As was pointed out earlier in this report, however, diag- nostic and treatment facilities for arthritis do not meet today's needs. 14 The optimal care of chronic arthritic patients requires the combined capabilities of a team of skilled health professionals. The patient's family physician is a most important member of this team, since it is he who is charged with the key role in management. If optimal care is to be provided on an effective and widespread basis, without interfering with the tradi- tional doctor-patient relationship, facilities and personnel for early diagnosis and com- prehensive treatment should be established and supported at four basic levels: Re- gional Arthritis Centers; Diagnostic and of outpatients from a defined geographic Treatment Clinics; Roving Consultation area. They would be staffed by part-time Boards; and an Arthritis Advisory Com- medical and associated personnel, and pol- mittee of the Rheumatism Section of The icies of financing and admitting would be Arthritis Foundation ( formerly, American identical to those of the parent institutions, Rheumatism Association). the Regional Arthritis Centers. Regional Arthritis Centers should be uni- versity-based or affiliated with large med- ical centers. They should provide facilities for the diagnosis and exemplary, compre- hensive care of outpatients, by both full- time and part-time medical and associated professional personnel, and each Center should contain a limited number of beds for short-term inpatient care. In addition, each Center should operate an automated multi-test laboratory and make laboratory services available to other diagnostic facil- ities and to physicians in the area. Such laboratories would provide for quality- controlled uniformity and standardization of diagnostic tests--services that are not presently available. Roving Consultation Boards would make periodic visits to hospitals in communities in which arthritis consultation services are not available. These Boards would be com- posed of professional personnel from the region's Arthritis Center or nearby Diag- nostic and Treatment Clinic. Diagnostic and Treatment Clinics should be established in existing arthritis centers and service clinics and in accredited hos- pitals or other qualified medical facilities. These clinics would provide facilities for the diagnosis and comprehensive treatment An Arthritis Advisory Committee of the Rheumatism Section of The Arthritis Foundation would be responsible for estab- lishing standards of quality and of pro- cedure for quality control of Regional Arthritis Centers, their automated multi- test laboratories, the Diagnostic and Treat- ment Clinics, and the Roving Consultation Boards. The Committee would work closely with the U. S. Public Health Service, all other public and voluntary health agencies, and with the American Medical Associa- tion. The philosophy of providing these facil- ities for early diagnosis and comprehensive treatment should be one of building on the strengths and eliminating the weak- nesses of present resources, rather than of creating a new structure. Maximum util- ization of and sustained support for cur- rently available facilities, together with the creation of new facilities, where needed, will give local physicians easy access to new information, as it becomes available; provide a mechanism for early diagnosis and treatment at the grass-roots level; and provide for the standardization of labora- tory criteria for diagnosis. Responsibility for achieving and maintaining a high standard of medical care will rest with the patient's family physician, leading rheu- matologists, and the Arthritis Advisory Committee. 3. That recruitment programs and undergraduate, grad- uate, and continuing edu- cation programs for the physician and for asso- ciated health personnel be improved and expanded in the area of the rheumatic diseases. Meeting the needs of the patient with arthritis begins with the recruitment and education of those who will care for and manage the patient. Proper management of arthritis patients can be provided only by persons who have professional knowl- edge, technical skills, and a commitment to the provision of optimal care and to the development and dissemination of knowl- edge. Professional people who fit this description-who can meet the ever-in- creasing demands for patient care, educa- tion, and research in chronic illness-are in extremely short supply. It is precisely because special and sup- porting skills are not available in quan- tities sufficient to provide optimal care for the arthritic that there is an urgent need for support of education in these fields, coupled with intensive and imaginative re- cruiting programs. Because recruiting suc- cess is, in the end, largely dependent upon the excellence of educational and training programs, the great need is for programs with the kind of built-in appeal that attracts medical students, well-trained physicians, and associated professional personnel. For this reason, exemplary, comprehensive care centers should be established in conjunc- tion with medical schools. These centers would be multi-categorically oriented, but would focus on arthritis as 9 prototype of chronic disease. They would serve as edu- cational facilities in which physicians would work in concert with associated profes- sional personnel and would provide grad- uate education for all fields. Federal grants to medical schools should be offered to assist in planning facilities and curricula, as well as for the support of faculty. As- sistance is also required for the support of large-scale, cooperative studies among all or most of the arthritis teaching centers and study units in the country. 4. That training for and sup port of better clinical in- vestigation be encouraged by all available means. The current approach to clinical investi- gation has produced an abundant and di- versified body of knowledge in recent years. For a variety of reasons, however, the emphasis has been on studies of bio- 15 chemical, immunologic, and morphologic aspects of the disease. Support for these studies has been, and should continue to be, available. In the long run, they are of the utmost significance. Nevertheless, there has been a tendency for these efforts to overshadow fundamental clinical stud- ies, to preempt the attention of investi- gators, and, thus, to inhibit work that is more directly applicable to patient needs and to the prevention of disability. The detailed recommendations that follow serve to identify means by which this imbalance in attack may be corrected. It is recommended that support for the Research Training Grant Program be ex- panded, thus accelerating the training of teachers and clinicians who are primarily concerned with patient care as a research and teaching activity. Physicians who are capable of asking the pertinent clinical questions, of designing studies that are capable of answering such questions, and of carrying these studies through to com- pletion are in short supply. There has been too little emphasis on the kind of excellent clinical judgment and critique that is' man- datory in such work. It is further recommended that clear and forthright support be made available to clinicians of proven capacity who are in a position to give and to teach excellent patient care and to conduct clinical investi- gation. Support has been inadequate for the physician whose area of major con- tribution is in such clinical spheres as defining natural history of disease and es- tablishing the role of a given therapeutic modality. It must be recognized that these problem areas are of fundamental im- portance, that they are distinctly worthy parts of the total investigational effort,* and that, as such, they are areas in which com- petent, research-oriented clinicians should be supported. It is recommended that support for hos- pital beds for clinical investigation be provided within the framework of the ar. thritis center concept. Hospitalization is of major, yet poorly defined, significance in the management of crippling arthritis. Proper clinical studies cannot be performed without an adequate supply of hospital .beds that are available to the subjects. The cost of providing such facilities is more than justified by the fact that each bed serves not one, but three interlocking purposes- exemplary patient care, the teaching of exemplary care to learners in all profes- sional health fields, and clinical investiga- tion. It is recommended that research grant appbcations that pertain, in large degree, to clinical studies be evaluated on a com- petitive basis with similar studies, rather than with programs that are based primar- ily in the experimental laboratory. Clinical studies are generally considered to be much more difficult to evaluate than experi- mentally induced results because of the extended observation programs that are required. the many subjective factors that impinge on the observer, and the slower evolution of scientific truths from observed data. Despite these problems, value judg- ments can be made if clinical studies are compared only to each other. There is a great need for a central co- ordinating agency that would be concerned exclusively with the clinical and epidemio- logical features of arthritis. Such an agency would provide continuing consultation in the areas of experimental design, biomet- rics, and data processing. It would s&ve as a focal point for drawing together widely separated investigators, who might then elect to join others in cooperative studies. And it would be expected to origi- nate investigative efforts of its Own. Finally, it is .recommended that an ar- thritis research coordinating agency be es- tablished as a function of the U.S. Public Health Service. This agency would, on a voluntary basis, contribute to the design and execution of cooperative clinical stud- ies, provide technical consultation in ex- perimental design and biometrics, and assist in efforts to standardize criteria and laboratory procedures. In general, it would coordinate clinical research activities in three major problem areas: 1) The natural history of the diseases and the effect upon them of therapy or lack of therapy, includ- ing analysis of such areas as patient mo- tivation and the useful patterns of various agencies, such as centers, clinics, and hos- pitals; 2) The study of diagnostic criteria, therapeutic efficacy, and such patterns as remission and exacerbation, including both laboratory and clinical features; and 3) Classical epidemiological work, both in terms of measuring the extent of the prob- lem in various areas and under various circumstances and in terms of identifying etiological factors. 5. That all agencies that are concerned with crippling arthritis dramatically im- prove and expand pro- grams of public education and in formation. Comprehensive programs of public ed- ucation and information are essential to the effective control of crippling arthritis. An uninformed patient and general public can neither intelligently seek good care nor demand that health authorities provide proper treatment and care facilities for arthritis.' In lieu of professional help, the victims of arthritis spend $250 million annually on worthless and fraudulent treat- ments for arthritis. Obviously, neglect of this disease problem, on all fronts, has created, and is, in turn, caused by, a com- posite of apathy, ignorance, and misunder- standing. B rea ing this frustrating chain k of hopelessness will require intelligent and aggressive action by a number of agencies, at a variety of levels. A public education and information program on arthritis should work to achieve the following goals: To motivate arthritics to seek qualified care, to seek it sooner than they might otherwise, and to stick with it; to improve the attitude of the pub- lic toward arthritis and the attitude of the arthritic toward his disease; to motivate those who produce and disseminate health information to place more emphasis on arthritis; to create in the public an aware- ness of the size and seriousness of the ar- thritis problem; and to stimulate wide- spread interest in a major effort to meet the challenge that the problem of crippling arthritis poses. If these objectives are to be accom- plished, all agencies that are concerned with arthritis must concentrate their efforts in a continuing, nationwide program of in- formation dissemination that will make maximum use of all the tools of communica- tion to inform and educate the general and special publics about arthritis. In years past, the role of the Federal Government in focusing public attention on, and in pro- viding support for, the amelioration of trip- pling from arthritis has been small. It is now time for the U.S. Public Health Serv- ice to provide the resources and leadership that will enable public, private, and vol- untary agencies to work together to es- tablish a program of arthritis education 17 and information that will deal system- atically, thoroughly, and realistically with the needs of the millions of arthritics in this country. 6. That a substantial portion of Federal grants for the chronically ill and aged be earmarked for comprehen- sive community service programs for the arthritic. 18 The chronic nature of arthritis often re- quires that programs of supervision and care be continued for a prolonged period of time after the patient returns from the hospital to his home. Basically, two types of supervision are required: Home care programs, for the patient who is still home- bound; and outpatient care programs, for the patient who can leave home. Although necessarily different, both approaches to patient care depend for their success on the availability of a variety of facilities and skills. The availability of these skills and facilities is, in turn, directly dependent upon the support that is given to communi- ties to plan and to operate comprehensive service programs. The ultimate aim of treatment of the arthritic patient is to enable him to engage in productive activity in his home and in the community. Because of the tremendous variations in the prevalence of illness and in the resources that a community might have to combat the social, emotional, and economic, as well as the medical, problems of chronic illness, each community must develop the patterns by which it may use its particular resources to the fullest. It is while communities are developing patterns of resources utilization that they should give serious consideration to the desirability of combining programs for the long-term management of arthritic patients with those that are designed to cope with other chronic diseases. Combined efforts are usually more effective and more feasible than separate attacks on different disorders; and they enhance the management of the arthritic patient without unduly increasing the economic burden on a small community. Community planning should include pro- vision of facilities for all types of care; the development of appliances and equipment and the training of the patient and his fam- ily to use them; the means of bringing to- gether, most effectively, the patient, per- sonnel, and facilities; and the development of recreational and social activities that can be operated in conjunction with those that are enjoyed by other members of the community. Programs should also include means of evaluating their strengths and weaknesses, in order that they may be modified and improved on the basis of ex- perience. The need is great for community serv- ices that go beyond the hospital and the clinic-that enable the arthritic patient to lead a satisfying and productive life. Fed- eral formula and project grants that are earmarked for arthritis would, if provided, stimulate States and communities to come to grips with the problem of planning for and providing the long-term care that is needed to prevent crippling arthritis. Background Papers Works hop 1 Public Education and Information William S. Clark, M.D., Chairman It is to be hoped that we have just about reached that stage of civilization when we can say: "Our society can no longer afford the crippling diseases, the most notorious of which is arthritis." As distinct from the killer diseases, on behalf of which a dramatic mobilization of resources has enlisted overwhelming public response and cooperation, the gen- eral attitude toward this most familiar of the crippling diseases has become one of apathy. Perhaps because some form of arthritis has been known as far back in the history of man as we can go, and perhaps because a habit of frustration has been built up through the years (by the medical profession and by the lay public), this at- titude seems to be based on a belief not dissimilar to that held until very recently about poverty: that "rheumatism, like the poor, has always been with us." The built-in implication, of course, is that it always will be and that there's not much point in doing anything about it. But today, we are taking a new look at poverty in the midst of abundance, and we are attempting to apply intelligent and in- tensive effort towards its elimination. It would seem to be more than about time to take a new look at the country's leading crippler. This necessarily includes an ex- amination of what can be done to clear away the mists of apathy, now lying like some vast primordial miasma between us and the prospect of successful subjugation of this crippler of mankind. Let us first look at the facts. Arthritis, the second most prevalent chronic disease, affects an estimated 13,000,000 persons in the United States- one out of every 15 people-and adds 250,000 new victims each year. Over 3,300,OOO persons are limited in their ac- tivities by arthritis, of which number 697,. 20 000 are unable to work, keep house, or go to school. Of the 915,000 persons who are confined to their homes by chronic dis. eases, 17 percent attribute their problem to arthritis and rheumatism. Sixteen percent of over 16,000,0000 individuals who are classified as having limitation of major ac- tivity report arthritis as the responsible cause. Arthritis and rheumatism cause 1,223,. 000 persons to be confined to bed for one or more days each year. According to the National Health Survey, arthritis caused the loss of 12,000,OOO days from work in a recent single year. Arthri- tis is estimated to cost the Nation approx- imately $2,000,000,000 a year, including $500,000,000 in productivity loss and $130,000,000 in disability benefits. When arthritis strikes, there is a double loss: a worker ceases to produce at top capacity, perhaps to produce at all, with all that that means in loss of productivity to the economy, as a whole, and in terms of tax dollars for city, State, and Federal governments. In fact, only too often the wage earner is moved from the plus side of the ledger to the debit side; he becomes a consumer of tax monies. Proportionately, the arthritides consti- tute the most neglected group of diseases in the modern approach to good health. The general public has demonstrated no great concern. Funds from private and tax-sup ported resources that are allocated for re- search support that is directly related to arthritis are something less than $15,000,- 000. Facilities that are provided by the public for diagnosis, treatment, and re- habilitation are generally inadequate or lacking. Of the Nation's medical schools and teaching hospitals, less than one-third have noteworthy programs and projects for treatment, teaching, and research. Fewer than 1,600 physicians in the United States manifest an active interest in the arthritis problem, and it is estimated that there are fewer than 500 properly qualified medical specialists in the field of rheumatology. We have an ironic situation. On the one hand, there are not enough adequate facilities and not enough professional com- petence to meet the need; on the other hand. 8250,000,000 a year is spent on worthless and fraudulent treatments. We have a sit- uation in which, even when adequate pro- fessional help exists, large numbers of pa- tients do not seek or avail themselves of good care on the assumption that nothing can be done about arthritis-that it's a hair shirt they just have to live with. Re- inforcement of this traditional point of view, driven home by families, friends, and even physicians. is probably deepened by incessant, day-in-and-day-out TV commer- cials: "Medical authorities state there is no cure for arthritis; take aspirin to relieve the pain." Yet, it is now true that, with early diagnosis and comprehensive care, 75 percent of the crippling that is incident to arthritis can be prevented. It becomes obvious that the neglect of the arthritis problem is due to an amalgam of apathy, ignorance, and misunderstand- ine. Any solution must include intelligent and aggressive programs, by a number of agencies, at a variety of levels. Greater public awareness of the nature and magnitude of the problems of arthritis and rheumatism should have the following purposes : 1. To motivate patients to seek qualified medical services and to seek them sooner. so that they will receive earlier treatment and more effective prevention of disability. 2. To improve attitudes toward those that are aillicted, including those in the fam- ily, employees, teachers, neighbors, schoolmates, and friends, by encourag- ing them to replace a fatalistic attitude of gloom with a constructive and hope- ful outlook. 3. To motivate large numbers of prac- ticing physicians to become more knowledgeable and more skillful in the field of rheumatology. 8. To motivate more educators to provide, at all levels, more effective and more attractive programs for continuing edu- cation. 5. To motivate more hospitals and related agencies to provide optional facilities and resources, as required by knowl- edgeable physicians. 6. To encourage paramedical personnel to acquire increasing awareness and to improve general skills, knowledge, and services. Paramedical educators will, of necessity, improve programs for un- dergraduate and postgraduate educa- tion. 7. To provide for medical students, in- terns, and residents greater exposure to the diseases and to motivate them to take greater interest, with the result that more young persons will seek re- search and clinical careers in rheuma- tology. 6. To make more funds available for clinical and basic research. 9. To stimulate the development of new and more effective treatment methods. Impressing the public with the nature and importance of an insidious and undra- matic chronic disease, such as arthritis, is a challenge to physicians, health educators, and specialists in communication tech- niques. The successful methods that are appli- cable to acute and .limited morbidity and to the dreaded fatal diseases are not likely to be as effective in public education pro- grams that involve less dramatic, long- term chronic diseases. The problem is further complicated by the need for cor- recting false and misleading concepts, which are held by vast segments of the public. New and imaginative methods, involv- ing the development of educational con- tent and of communication, must be de- vised. Crash programs must be launched. Dedicated representatives from the fields of medicine, health education, and the communications professions must develop and apply techniques that will get the mes- sage across-that will compete favorably with public information programs in other fields. A new attitude toward health informa- tion must be cultivated in editois, news- casters, and writers in the years ahead. Moreover, the effort of government and voluntary agencies must be stepped up to achieve a greater impact. The combined public education activities of agencies should be focused on an immediate goal, the amelioration of crippling. A critical appraisal of public education by all who play a responsible role is long overdue. Such a review should take inven- tory of the past and current efforts. On the basis of current and future needs and trends in health education and mass cdm- munication, a program must be designed that will deal systematically, thoroughly, and realistically with the problem. 21 Workshop 2 Diagnosis and Treatment Facilities Ephraim P. Engleman, M.D., Chairman The objectives of our Workshop will be: (a) To consider those community-oriented facilities that are needed for the diagnosis and short-term treatment of arthritis; and (b) to explore the resources that are po- tentially available for such facilities. 22 It is appropriate, at this time, to define the term "arthritis," as it will be used in our Workshop. For purposes of our dis- cussion, the term "arthritis" will be used in a general sense to refer to a group of articular and para-articular diseases, often chronic that cause painful disability, which may be evanescent, episodic, static, or pro- gressive. Examples of such diseases are gout and bursitis, in which t&e disability may be evanescent or episodic, degenera- tive joint disease (osteoarthritis), in which disability may be static, and rheumatoid arthritis, in which disability is often pro- gressive. There are certain problems that must be recognized prior to our discussion of fa- cilities for diagnosis and treatment of arthritis. In the first place, we have little or no information about the cause or pre. vention of these diseases. Secondly, there is no unequivocal diagnostic test. And of those tests that are commonly used, there are at least two sets of diagnostic tests for which there is no uniformity or standardi- zation. I refer, specifically, to the tests for the rheumatoid and lupus factors and to the criteria for radiologic diagnosis. Thus, our methods for diagnosis are tra- ditional. They include the time-consuming history and physical exainination and the performance of laboratory tests and X-ray studies. A third problem concerns the lack of a cure. Thus, in most instances, we employ several therapeutic modalities, which may be used simultaneously. Examples of such modalities are rest and exercise, in proper balance, and drugs and simple orthopedid supports or appliances. Often the treat- ment is palliative. Nevertheless, the proper management of early disease will usually reduce pain, preserve function, and pre- vent progressive deformity. Furthermore, proper treatment will minimize the likeli- hood of iatrogenic disease. Some 13 million people in the United States maintain that they have some form of arthritis. This prevalence is so high that responsibility for these patients must be assumed by their local physicians, by doc- tors with varying interests, including those in general practice. This brings us to the fourth problem, namely, the shortage of physicians with at least a modest degree of skill, or even interest, in the care of the arthritic patient. The gap that exists be- tween the knowledge that is available about arthritis and its application to the patient can only result in a critical delay in accu- rate diagnosis and proper treatment. At the community level, we are faced with a fifth major problem: the shortage of arthritis clinics. Although there are ap- proximately seven thousand accredited hos- pitals in the United States, there are only 300 arthritis clinics, many of which are poorly staffed and equipped. And most of these clinics are restricted to large popu- lation centers. Finally, it must be noted that there is an almost complete absence of certain arthritis facilities that are available in many other parts of the world. Thus, we have, in the United States, virtually no provision for rural arthritis services, hospital beds for arthritis, national registry of patients with arthritis, a directory of diagnostic and treatment facilities that are available, and/or an assessment of screening tech- niques, which might provide early diag- nosis on a large-scale basis. This, briefly, is the current status of the diagnosis and treatment of arthritis in the United States. That there are vital needs is self-evident. Nearly one-half of the pa- tients who have arthritis are receiving no medical care. Thus, they are candidates for crippling or disability, which might be prevented or minimized. Our Workshop will make practical recommendations, which, hopefully, will satisfy some of our needs. Workshop 3 The Long-Term Care of Patients with Arthritic Disabilities Currier McEwen, M.D., Chairman A. Who are the patients with whom we are concerned? It is assumed that arthritic patients in acute and severe subacute stages need gen- eral hospital facilities and that this Work- shop is concerned with those who have progressed beyond those stages. These pa- tients have need of less complex facilities, but, nevertheless, specialized skills and programs. The patients who are in need of this care include: 1. Those with inflammatory types of ar- thritis, in mild subacute and chronic stages, without deformities, but whose illnesses can be expected to remain active for many weeks or months; 2. Those with similar arthritis who have developed deformities that probably can be corrected with nonsurgical measures; 3. Similar patients with advanced deform- ities, which require surgical measures for correction; 4. Patients with advanced deformities and disabilities, which have little promise for more than very limited correction; 5. Patients with osteoarthritis of the dis- abling type, who require intensive pro- grams of physical therapy and therapeutic exercises; 6. Similar patients who require surgical measures ; 7. Patients with arthritic disabilities, who have little potential for rehabilitation be- cause of other handicaps, such as senility, stroke, etc. ; 8. Patients who should be removed from their home environments for short periods, either for intensive supervision of correc- tive measures or for psycho-social reasons; 9. Patients who are in need of learning Aids to Daily Living; 10. Patients who require prevention of de- formity, as well as correction. These groups include patients of all fi- nancial levels, but the needs are especially important for those in low and moderate income groups. 23 B. Where do these patients IWW receive care? Information that is currently available permits only general answers to this ques- tion. The great majority of these patients now receive very inadequate care, either in their own homes, in general hospitals, in chronic disease hospitals, or in nursing homes. It is probably true that, in many in- stances, even well-to-do patients, in their own homes, receive inadequate care be- cause of lack of (a) suitable programs, (b) skilled personnel, (c) knowledge of available community resources, and (d) coordination of existing community re- sources. C. What are the special needs? The special needs of the various types of patients who are listed under section A include: 24 1. Facilities of the simple hospital type with which they can be effectively and economically cared for; 2. Skilled consultant services, provided on a team basis, to plan and periodically assess each patient's program; 3. Ready access to general hospital beds for those patients whose course of disease demands that level of care, because of intercurrent illness, exacerbation of dis- ease, or suitability for a definitive surgical or other therapeutic measure; 4. Financial arrangements that will permit patients of all economic levels to receive optimal care for whatever period is re- quired; 5. Means of continuing supervision of the program after the patient returns home; and means of providing for his total needs, including care of all illnesses other than the arthritis; 6. Arrangements to facilitate the retrain- ing of patients for jobs that are within their capabilities and assistance in job placement; 7. Development of arrangements to meet the ultimate needs of those patients who have no homes and whose potential for rehabilitation is small. D. What skills are needed? The essential skills include those of the: 1. Rheumatologist; 2. Orthopedist; 3. Physiatrist; 4. Physical Therapist; 5. Occupational Therapist; 6. Psychologist; 7. Social Worker; 8. Vocational Coun- selor; 9. Nurse and Aide; 10. Public Health Nurse (including Visiting Nurses). E. What facilities are needed? These include: 1. Facilities of a simple physical type, which provide a pleasant atmosphere, beds, medical supervision, nursing care, space and equipment for therapeutic exercises. splinting and other unelaborate measures, and facilities for recreation, where con- structive rehabilitation programs can be most effectively and economically carried out for patients of the types that were noted under section A ; 2. General hospital beds, to which patients can be transferred readily if their medical needs demand it; 3. Consideration must be given to the roles of existing types of facilities, such as nurs- ing homes, in the care of these patients; 4. The patient's own home should be the most important facility of all in' the ulti- mate care of the arthritic. Means must be developed to make the home an effective place for the continuation of constructive programs; 5. Development of more shops with faeili- ties for the employment of rehabilitated arthritic patients. Workshop 4 Professional Education Howard F. Polley, M.D., Chairman Increasing attention is being given to arthritic diseases, not only because they are conditions for which satisfactory scien- tific answers have not yet been found, but also because of the increasing awareness of the associated public health and com- munity problems. No doubt, both scien- tific and public interests have been stimu- lated by research efforts, especially those of the last 15 years or so, that have been directed toward the solution of both the clinical and the basic science aspects of the biochemical, cellular, and other abnor- malities that occur in various arthritic dis- eases. Although interest in arthritis prompted such investigations, the resulting scientific and public health benefits may extend to areas far beyond those of the diseases toward which the efforts were initially directed. The increasing attention that arthritis has received has also revealed major ob- stacles to the solution of community health problems that arthritic diseases present. The recognition that there are such oh- stacles and that they may not yet have been defined well enough to facilitate their solu- tion is the basis for this conference, which has been called by the Surgeon General, U.S. Public Health Service Our Work- shop's attention is particularly directed to -the professional education aspects of the prevention of disability from arthritis. Obstacles that are related to the pro- fessional education aspects of better public health management of arthritis may in- clude: (1) shortages of skilled professional personnel in various pertinent medical and paramedical fields; (2) inadequate use of presently available knowledge and public health techniques to determine which per- sons and which areas would be amenable to preventive measures; (3) public and professional indifference to the ever-in- creasing magnitude of the social and eco- nomic consequences of failure to prevent disability; and (4) financial requirements of the correction of recognized deficiencies. In order to obtain a better approach to the solution of these obstacles and of those that are, possibly, less well recognized, it seems necessary to define, more clearly, the current resources, such as the number of presently available medical and para- medical specialists, whose skills could con- tribute to the prevention of disahility in areas in which they are now located. It seems necessary, in addition, to determine how they function in their medical and social communities. A whole series of corollary questions that are suggested are listed below. How can the talents of these specialists best be used? What are the optimal methods of teach- ing and training medical and paramedi- cal skills at the professional level? How can professional education attract the dedicated interest of knowledgeable graduate physicians and scientists and paramedical personnel, such as physical and occupational therapists, social-serv- ice workers, nurses, nutritionists, and others, for prevention of disability? What are the relationships, if any, be- tween the undergraduate educational ex. periences in either clinical or research aspects of rheumatic diseases and gradu- ate professional education? Who can undertake professional educa- tion most effectively, and where? 25 Will postgraduate training of established medical and paramedical personnel reach those physicians, scientists, and others who have the earliest opportunity to apply preventive measures against disability? of arthritic patients for whom medical could determine, accurately, the numbers or paramedical care (or both) is needed to prevent disability? Where are such patients in relation to the availability of the skills they are thought to need? Hopefully, such attention might also con- tribute toward solution of those other aspects of the prevention of disability that are being considered in the other Work- shops in this conference. Will the experience of postgraduate edu- cation in related public health endeavors indicate whether postgraduate education can hasten the solution of public health problems that are presented by disa- bility from arthritis? Other related questions arise, such as: When does the arthritic patient need the attention of the specialist-medical or paramedical-for the prevention of dis- ability? Is the current use of local hospital and other medical facilities, university medi- cal or other research centers, and public health offices the best approach to the prevention of disability from arthritis? Can restorative measures or ordinary domiciliary care be used to better ad- vantage, or modified readily, for preven. tion of disability? 26 Would it be pertinent to know whether comprehensive public health surveys How might patients be motivated to use available preventive measures? What is the significance of the socio- economic aspect of disability from ar- thritis on the patient, family, and com- munity? Certain of these and related questions are more particularly the province of other Workshops in this conference, namely, those that are concerned with public edu- cation and information, diagnostic and therapeutic facilities, long-term manage- ment, clinical investigation and the train- ing for it. voluntary and public agency activities, and socioeconomic factors. Like- wise, the questions that are pertinent to postgraduate education may not all be separable from their specific approaches. However, in so far as it is practical to do so, our attention will be directed, particu- larly, to solution of the problems of pro- fessional education, as it is related to prevention of disability from arthritis. Workshop 5 Clinical Investigation and Training John L. Decker, M.D., Chairman "Clinical investigation" is, in the current language of the medical scientist, com- monly interpreted as encompassing a wide field, from electron microscopy to the in- dications for synovectomy, from the struc- ture of peptides to population studies, and from the problems of membrane potentials to the psychologic impact of chronic in- validism. While recognizing and rejoicing in the breadth of this definition and in the fundamental role of the more basic ap- proaches to generating new avenues of thought and investigation, the clinician, and with him, our society, is confronted, now, today, with the unfilled needs of the rheumatic disease patient. A part of the title of this conference, "prevention of dis- ability," makes the point clearly. The way to prevent disability is to prevent or cure the disease. Despite some hopeful flicker- ings on the horizon, flickerings that need continued nourishment and hard work, these routes are not now open. Another way must be sought. It is this effort-to address ourselves directly to the individual patient, to under- stand the framework in which his disease develops, to diagnose and classify his ill- ness, to predict its outcome accurately and to manage it in such a way as to prevent disability-which constitutes "clinical in- vestigation" in a more restricted form and is our subject, here. There is no clear dividing line between "basic" and "clinical" investigation; and it is unwise to seek or to draw one, for each flourishes best when enlightened by the other. The emphasis on the patient and on his problem that is expressed here is not meant to denigrate more fundamental studies, nor to imply that there is only one way to do things. Obviously, there are many avenues; but it is our present pur- pose to explore the possibilities and pitfalls of one, only. Within the health professions, "arthri- tis" means inflammation of the joint. Thus. this conference has great breadth, in terms of specific diseases. In selecting a specific area or disease for work, many considera- tions, some appropriate and others dis- tinctly inappropriate, assail this conference (and the investigator). The choice might be based upon quantity. Which disease is most common? Degenerative joint dis- ease? Which disease causes the greatest economic loss and misery? Rheumatoid arthritis? The choice might be based on scientific considerations-that is, where the leads look best. Which disease seems more likely to be due to infection? Reiter's syndrome? Which disease permits study of the synovia before, during, and after induced inflammation? Gouty arthritis? The choice could be based upon its current "popularity rating"; no granting commit- tee can entirely divest itself of medical fashion. In which disease do genetic fac- tors seem most pertinent? Ankylosing spondylitis? Which disease is the proto- type of "autoimmunity?" Systemic lupus erythematosus? Or perhaps the considera- tions should be more practical. What dis- ease will be troubling the largest propor- tion of the next one hundred patients to be seen? Fibrositis? In practical fact, all of these considera- tions, and more besides, enter into the choice. For our purposes, it is sufficient to recognize that choice is difficult and that it is foolish to restrict or to delimit, unduly, the area of concern. The diseases that cause crippling overlap in a myriad of fascinating ways, and the study of the exotic is no less (nor no more) to be pre- ferred than the study of the common. The prototype disease, and the major public health problem, is rheumatoid ar- thritis. While most of our thinking will be concerned with rheumatoid arthritis, les- sons that are learned in other diseases will apply to rheumatoid arthritis; and, con. versely, many of the conclusions that are reached will have validity beyond rheuma- toid arthritis, alone. This essay will cite a few approaches to 27 knowledge that can be applied to prevent- ing disability from rheumatoid arthritis. It will discuss the difficulties which tend to hinder these investigations. And it will suggest means of eliminating some of these obstacles. The nature of the professional training that qualifies individuals for such work will be considered. 28 1. Problems for Clinical Investigation The number of unanswered questions that are concerned with rheumatoid arthri- tis is unlimited. Much of the operating knowledge that is now in general use has not been "established," in the rigorous scientific sense of the word. Consequently, almost all of the thought and action pat. terns of today's clinician might be consid- ered to be in need of reevaluation. In practical fact, the last 20 or 30 years have provided a reasonable baseline of knowledge, both in the literature and in the abilities of physicians and others who have been privileged to observe the disease in large numbers of patients. A good ex- ample of this baseline knowledge exists in the criteria for the diagnosis of rheuma- toid arthritis, which was first suggested in 1957 by a committee of the Rheumatism Section of the Arthritis Foundation. These criteria continue to serve a most useful purpose; and they deserve the constant reappraisal that was suggested by the original committee and, recently, begun. Thus, there is need for clinical investiga- tion of the foregone conclusions of the past, as well as of the new tools, ideas, and modalities of today. Early identification of the disease con- tinues to be a problem; but it should now be extended to efforts to identify suscep- tible individuals before overt onset of dis- ease. What is the meaning of serum rheu- matoid factor in healthy individuals? Studies of rheumatoid arthritis in popula- tions, both at one point in time or with continuing reappraisal of a population sample, have proven to be useful, in terms of defining the magnitude of the problem and of permitting the drawing of conclu- sions as to its nature. For example, the low order of familial aggregation that is found in surveys of special populations raises important questions about the dis- ease, which appears in certain families at a rate far beyond that expected. The natural history of the disease de- serves constant study, as do its relation- ships to other illnesses, such as chronic ulcerative colitis or psoriasis. The recently changing views of the distinctions between rheumatoid arthritis and ankylosing spon- dylitis provide evidence that this type of nosological effort is still valid today. In- deed, there are cogent reasons to believe that "rheumatoid arthritis" is not one disease, but several. For example, are the monarticular, large joint disease of ado- lescence, the destructive, nodular disease of the metacarpophalangeal joints in young adults, and the chronic inflammatory synovitis of shoulder and knee of did age the same disease of the same cause? More information is needed about such freely used terms as "active," "inactive," "suppressed, " `Lburned-out," and "in re- mission." They have received careful at- tention in recent years, but one cannot escape the fact that the local destruction of a wrist, for example, seems, on occasion, to progress inexorably, while the systemic disease is regarded as inactive. Can dis- tinctions be drawn and quantitation achieved between "local" and "systemic" activity? Would it be worthwhile to de- velop prognostic indices for individual joints? The fundamental need to distinguish pat- terns, classes, and types of disease rests not in a desire to create more eponymic syndromes, but, for our purposes, to achieve a more definitive prognosis. This is a prerequisite to properly planned thera- peutic investigation, as well as to an en- lightened treatment program for any one individual. This, too, has been done in the past, both retrospectively and prospec- tively. But new data handling methods, coupled with precise, prospective definition of the variables, should produce new in- sights. The events that surround remissions and exacerbations of the disease deserve study. Such changes are regarded as spontaneous, but it seems likely that there are unrecog- nized contributing events, be they psycho- social, infectious, traumatic, or environ- mental. The entire area of treatment, or man- agement, lies open to clinical investigation. Only in recent years have properly con- trolled studies of corticosteroids, gold, and antimalarial therapy become available. Some attention has also been directed to non-medicinal approaches, such as long- term hospitalization, or immobilization, in reducing joint inflammation. Among physical measures that are often recommended, few have been validated by exacting studies. Such matters as bed rest, range of motion and muscle-building exer- cises, the role of heat in its various forms, There has been much recent interest in and preventive exercises deserve analysis. local therapeutic measures. Both (intra- articular) injections and surgical ap- proaches have been advised. No controlled studies are available. Early synovectomy -that is, before cartilage damage-can- not readily be advised nor accepted by the patient, unless it is established that it is not, in itself, a damaging procedure and that joint disintegration can be prevented. Reparative surgery has been in use longer, and its benefits are more evident, al- though, even here, it is essential to define results in terms of useful function, rather than in terms of pleasing cosmetics. De- spite the many variables that are involved, appropriately designed studies, evaluated over an adequate period, should provide the needed definitive evidence on which to construct therapeutic plans. Il. Inhibitors of Clinical Investigation The present paucity of studies of the type that have been described is readily accounted for: they are difficult to per- form. In considering or conducting such studies, the investigator often finds himself stopped by an insuperable problem or by a combination of problems. It is appro- The nature of the disease, itself, is obvi- ously the key factor. It is chronic, very priate to examine some of them. different from patient to patient, given to abrupt, seemingly inexplicable changes in activity, and thoroughly intermingled with the emotional and physical nature of its human victims. There are no comparable animal models. These facts force the con- clusion that appropriate studies require large numbers of patients and extended periods of study, measured in years and decades, rather than in weeks or months. The investigator, then, must have qual- ities that are far from universal, such as infinite patience; the ability to design ap- propriate studies that are based on an exhaustive knowledge of the disease; a foresighted perception of what questions or problems will be of significance when his work comes into its final phases; the abil- ity to inspire and to stimulate his asso- ciates; and the sustained and commu- nicable concern for his patients that is the mark of the good physician. One of the inhibitors of clinical investigation in the rheumatic diseases is immediately clear: such paragons of virtue are rare, if not 29 30 altogether unknown! A stable and reliable patient population of sufficient size is not always available. In many areas, this factor may hinge upon adequate transportation facilities. Many studies require a degree of patient under- standing and cooperation that can rarely be attained in the average clinic popula- tion. Patients who are able to pay a fee for services should be included; presumably, no charges would be made while they are "in" a study. There are major ethical factors that inhibit (perhaps properly) some work. Is it ever appropriate to per- form sham surgery or to give a lactose placebo over years? Inadequate cooperation between the various medical specialties is another potent inhibitor. Occasionally, this is based on long tradition or petty jealousies; more often, it is rooted in a failure to take the time to understand the ideas, methods, and motives of another discipline. The expense of prolonged hospitaliza- tion, crucial to some work, has been an inhibitory factor where "free beds" are not available to the investigator. The high cost of this type of hospitalization within the institutions in which clinical research is being done has made this form of sup- port difficult to obtain. An additional important problem is the pressures that are put on the physician who does have a few such beds at his corn- mand. The demands and the need for chronic hospitalization are so heavy and so pathetic that it requires a heart of stone to maintain the integrity of such a unit for investigational purposes, alone. The only reasonable solution is the provision of a chronic disease facility, with beds at a lower cost than those in the general hos- pital, but in close geographic proximity to the medical center. Such a facility is con- sonant with the rapidly increasing propor- tion of chronic to acute problems that is now being noted in medical practice, with the increasing mean age of the "average American," and with the overwhelming need for better training in chronic disease for all of the health professions. To return to the inhibitors of clinical investigation, freedom. when it is denied the clinical investigator, is an inhibitor that deserves more deliberate mention. Creative work requires time, imagination, effort. and an environment that encourages opportunistic ventures into the unknown. The investigator cati readily find himself nailed to the rack of a protocol that was written years before, unable to exercise his originality and imagination. Worse than this, he can be so burdened by the multi- tude of administrative responsibilities that are sure to result from the problems that have already been cited that he lacks the spirit or mental energy to pursue even his protocol. much less anything new, His free- dom must be preserved. In the last analysis, monumental effort on the part of the investigator can over- come most of these problems. Then, the urgency and the pertinence of the hypothe- sis that is to be studied become of over- riding importance. It is obvious that an hypothesis that involves basic attributes of the disease process is more compelling than an hypothesis that will require hundreds of man hours and scores of patients to deter- mine whether Pill X or Procedure Y has an effect that is beyond that to be expected from chauce. alone. 111. Encouragement of Clinical investigation Our discussions will center on possible means of encouraging clinical investiga- tion. A major srgtnent of the problem, which might be entitled "The Care and Feeding of the Clinical Investigator," is considered next (IV). Other factors that apply include : a. Where should this type of investiga- tional activity be done? Within a medical school? Within a research institute? Within the practice of medicine, either by individuals or in groups? What financial arrange- ments are appropriate for hospital- ization for clinical investigation? b. Cooperative studies. Should all or any portion of this work be car- ried out with central direction to a number of operating units? How should these ventures be organized and by whom? c. The enthusiastic support of the local community, both lay and medical, can make a great difference. How can this be assured? d. The services that are required in any particular study-laboratory, physi- cal medicine, transportation, follow up, etc.-will differ; but they must be available. Almost all will require consultative assistance in experi- mental design and statistical analy- sis. How can such facilities be made available? IV. Training for Clinical In the last analysis, the ideas that will investigation build tomorrow must come from the mind of a man today. The research team, as a group, contributes to the environment of each individual on it; but an individual concerns us here. Any improvement or in- crease in clinical investigation has a single sine qua non-the investigator himself. As suggested above, he must be a man of many parts. It is desirable that the creative individ- ual be identified as early as possible and be introduced to the field in such a way that he will wish to enter it. Important consequences of this view are that training units for rheumatic disease should be widely dispersed in our educational sys- tem; that they should be in a position to recruit men to the field; and that the process of early identification is to be ex- pected to bring many more into training than will actually perform adequately as independent clinical investigators. The training will have to be flexible. The only requirement should be that the trainee must attack and master one area, no matter how limited, in depth. It seems unwise that all trainees be versed in a pre- clinical discipline, although this would be the course for many. It is assumed that the trainee will be involved in clinical in- vestigation and that the majority of his training will come in the one-to-one rela- tionship with the preceptor, who is jointly involved in his problem. All training units cannot (and should not) have competence in all disciplines. The trainee should be directed to the best possible position for the accomplishment of his purpose, be it a basic science unit, another rheumatic disease training unit, or a specialized institute or program. Starting independent work represents the point of greatest attrition, perhaps rightly so. Appropriate support mecha- nisms should be available to permit the truly competent man to pursue his problem in a status beyond that of trainee. During this period, which might extend to three or four years, he should be free of heavy administrative or teaching responsibilities. He should complete the period ready to assume a permanent role as a clinical in- vestigator. He should be assisted and guided in finding a post that will permit the full utilization of his talents. As of today, this post is usually conceived of as an academic 31 32 appointment within a medical school. As more emphasis is placed on the investiga- tional aspects of patient care, however, it seems likely that suitable posts will open up in hospitals, private clinics, and founda- tions; with proper direction and relation- ships, a suitable environment can readily be developed in such circumstances. The mode of support for the clinical in- vestigator is crucial. The rapidly recurring need to demonstrate "progress" to the granting agencies, both private and gov- ernmental, has tended to direct efforts to- ward limited and short-term goals. dn the other hand, the difficulties of a carte blanche program of, for example, 15 years duration are obvious. Some intermediate mode may be necessary for people who work in the field of treatment of the rheu- matic diseases. Some of the unsolved, and perhaps un- solvable, problems of training investigators for work in rheumatic diseases include the following : a. Is all of medical school necessary to produce a specialized clinical investi- gator? There are reasons to believe that advancing age and the brainwash- ing of the average medical school cur- riculum smother originality. Should there be "short cut" routes to clinical investigation? Might some subject areas be dropped and others fortified? b. Should training of clinical investigators be the responsibility of a few (less than ten) strong and especially organ- ized training units? c. How can the trainee be encouraged to keep his breadth of vision wide while he is concentrating on a limited prob- lem and using circumscribed modal- ities? Should he be exposed to a sur- vey period during which he would study a wide range of techniques and their limitations? d. Would a regular pattern of rotation of trainees among several training units serve a useful purpose? e. Is a critical investigator born, or can the talent be developed? The ability to design clinical studies, to select prop- erly matched controls, to analyze the many variables that are involved, and to appreciate what has and what has not been shown to be fact, seems to be rare. Are these talents "teachable?" If the answer is affirmative, should the teaching be by precept only, or can formal courses or programmed instruc- tion be a major benefit? Workshop 6 Voluntary and Public Agency Activities and Programs William D. Robinson, M.D., Chairman In spite of the growing recognition of the importance of the effect of rheumatic diseases on the health and economy of the community, there is little precise informa- tion available on the prevalence of these diseases in the general population. Accord- ing to the United States National Health Survey of 1961-1963, rheumatic diseases caused a loss of 12 million man-days each year, with 13 million people in this coun- try estimated to be affected. An estimate of the degree of crippling that was at- tributed to these diseases was also pro- vided by this survey: 157,000 individuals were confined to their homes because of rheumatic diseases. Another index of incapacitation is pro- vided by the roles of applicants for dis- ability benefits under Social Security. During the period of this three-year survey, 30,000 arthritic applicants a year were unable to work for six months and were eligible for Social Security disability bene- fits. The reason for this is clearly related to the age and sex distribution of indi- viduals who are eligible under this pro- gram, since it does not include individuals where the impact of certain types of crip- pling arthritis are most heavily felt. Only 18 percent of the individuals in this pro- gram were under the age of 50 years, and only 20 percent were women. Of the ap- plicants for Social Security disability bene- fits, 56 percent had osteoarthritis and 27 percent had rheumatoid arthritis (1). A National Health Education Committee, in Washington, D. C., estimated that each year 320,000 persons in the United States are rendered totally unemployable by rbeu- matic diseases. While more accurate data is certainly desirable, there is no question that this Workshop is dealing with a prob- lem of considerable magnitude. There are at least forty different forms of arthritis and related diseases that can lead to temporary or protracted disability, or to permanent crippling. Of these, the one that bulks largest, in terms of human suffering, that is characterized by a pro- tracted or recurrent course, and that pos- sesses the greatest capacity for producing irreversible crippling is rheumatoid ar- thritis. While osteoarthritis is, statistically, a more common disease (indeed, tech- nically almost every individual who is over the age of 40 can be regarded as having some degree of osteoarthritis) this condi- tion is very gradual in its onset and pro- gression. It permits adaptation of the pa- tient's level of activity over a long period of time and rarely causes a severe degree of difficulty. In contrast, rheumatoid ar- thritis strikes unpredictably. It affects a younger age group at the time of maximum responsibility, in family relationships, striking the wage earner in his most pro- ductive years and the housewife at times of maximum family responsibilities. Specific infections of the joint and gout can also cause crippling, but in these situ- ations effective medical management is well defined and the primary problems are ac- curate diagnosis and patient cooperation. A variety of forms of nonarticular rheu- matism may cause temporary disability of considerable magnitude, but these condi- tions, in a great majority of cases, are limited to a few weeks or months in dura- tion; and, with proper management, they should not result in irreversible crippling. Therefore, in this Workshop, rheumatoid arthritis may be regarded as the prototype of the crippling diseases, not only because it is the least well understood and the most difficult to manage, from the medical point of view, but also because of its important impact on the individual, on his family, and on his ability to function in society. Also pertinent to the purpose of this Workshop is the fact that any sound pro- gram that is developed to meet the problem of disability from rheumatoid arthritis will automatically include the measures that can be brought to bear on other forms of disability from rheumatic diseases. Indeed, it would be virtually impossible to develop an adequate program for rheumatoid ar- thritis that would not accomplish this purpose. Basic Consideratione In the prevention of disability from rheumatoid arthritis, there is one fact that has been repeatedly demonstrated and agreed upon by virtually al1 workers in the field-the importance of early hospitaliza- tion and subsequent medical and social support. A powerful argument can be made in favor of hospital treatment early in the course of rheumatoid arthritis and for the 33 provision of adequate medical and social supervision, on a long-term basis, follow- ing discharge from the hospital. It is clear that these measures are important in the maintenance of the functional ability of patients with rheumatoid arthritis and, therefore, in the prevention of disability and crippling from this disease. The importance of early hospitalization was clearly outlined by Short and Bauer and their associates (2)) and it has been repeatedly confirmed in additional studies. All of these studies indicate, clearly, that the course of the disease is better in those patients who are admitted to the hospital within one year of onset of their disease. Because of the importance of this thesis to the subject of this Workshop, it is worthwile to look at, in some detail, at least one of these studies. The most recently reported study (3, 4, 5) consisted of an original group of 307 admissions to the Rheumatism Unit of the Northern General Hospital in Edinburgh, Scotland, between June 1948 and July 1951. Admission to the hospital had been decided upon because of active disease, the presence of deformities, or both. The mean duration of stay in the hospital was 9.4 weeks. While in the hospital, all the pa- tients were put under the same basic regi- men, which was comprised of rest in bed, the application of plaster splints to affected joints, aspirin to limits of tolerance, physi- otherapy, and a graduated return to the highest attainable functional level. Drugs other than aspirin were avoided. After discharge, the patients were seen at regular intervals and their treatment was modified as the need arose. Splints were removed and help was provided in domestic and employment problems. At this stage, drugs were given whenever they were indicated. Careful assessment of disease activity and functional capacity was made at the time of admission to the hospital, at the time of discharge from the hospital, and at intervals of two, four, six, and nine years following discharge from the hospital. Of the 200 survivors who were available for assessment some nine years after discharge from hospital, 20.5 percent were without significant residual disability, 41 percent were moderately incapacitated, 27 percent were more severely crippled, and 11.5 per- cent had become entirely dependent on others. Between discharge from the hospital and the first assessment, some two years later, the overall pattern reflected maintenance of nearly all the improvement that had oc- curred during hospitalization, with an over- all pattern of some further improvement. From two years onward, there was a grad- ual but progressive deterioration in the functional status of the group, as a whole, due, in part, at least, to increasing age and degenerative changes in previously dam- aged joints. The disease remained moder- ately active in the majority of patients throughout the period of observation, but functional capacity and the capacity for useful employment was reasonably well maintained among the survivors. A study of social and economic factors indicated a close relationship between domestic or financial difficulties and the degree of crippling, as might be expected; but the relatively small number of unre- solved problems in the last assessment was a clear indication of the important part that is played by medical social workers in the long-term care of the disabled. Maintenance or loss of morale was also intimately related to the degree of dis- ability. The group that showed the greatest ini- tial improvement was comprised of those whose musculature was likely to be most efficient-the young, rather than the old, men, rather than women, and manual, rather than sedentary workers. This, as well as other observations, would suggest that benefit that was derived from treat- ment was more attributable to the physical measures that were used in the maintenance of function than to the effectiveness of measures that were directed toward reduc- tion of disease activity. There are two points that must be kept in mind in generalizing from studies of this sort. The conclusions, with respect to the course and prognosis of rheumatoid arthritis, are naturally based on cases that are severe enough to be selected for hos- pital treatment. They do not necessarily apply to the milder cases, with little or no disability, which may never be referred to a hospital. Several surveys indicate that such mild cases, with little or no dis- ability, make up a considerable portion of the total number of people with rheuma- toid arthritis in the whole population. It must also be borne in mind that the death rate among such groups of patients with rheumatoid arthritis is higher than in the general population, in all ages and in both sexes, although the causes of death do not appear to differ from the expected pattern. Mortality is highest among those most severely affected by rheumatoid ar- thritis. The fact must be borne in mind in reviewing late followup results, since the removal of the more severely affected segment of the group may give rise to an over-optimistic view of the long-range results. 0 b jectiver In order to make available to all patients with rheumatoid arthritis the advantages of early hospitalization, combined with sub- sequent careful medical and social super- vision, effort must be directed toward at least three objectives: A. Acceptance by the patient and by the general medical profession of the fact that early intensive treatment is both necessary and of value. This involves a public education program, as well as an education program for physicians and for paramedical workers. It also underscores the necessity for early and accurate diagnosis, with the associated responsibility of insuring that facilities for early and accurate diagnosis are available. B. Availability and adequacy of facilities for hospitalization. This clearly in- volves a significant economic problem. C. In addition, it is important that op- timal facilities be available, in terms of both trained personnel and physical resources, to provide the services that are needed for the arthritic patients. Required are physicians who are skilled in the medical, orthopedic, and phys- ical medicine aspects of rheumatic dis- eases. Required, also, are the special skills and experience of physical ther- apists, social service workers, nursing personnel, occupational therapists, nu- tritionists, and dietitians. A soundly based program must, clearly, be in- volved with the training of such indi- viduals, as well as with their appro- priate utilization. Availability and adequacy of resources for the medical and social supervision that must follow the period of intensive treatment during hospitalization and, also, for those patients whose disease is not severe enough to require hos- pitalization. This involves the estab- lishment, distribution, and setting of proper standards for arthritis clinics, in order to provide the necessary med- ical supervision. It also involves the services of all of the paramedical pro- fessions who are concerned with the 35 hospitalization facilities that are listed above. To be successful, this aspect of the program must also enlist the serv- ices of many agencies, such as public health nurses, visiting nurses, voca- tional and recreational programs, and rehabilitation efforts, which are not di- rected primarily at the arthritic pa- tient. Although the efforts of these organizations are not restricted to pa- tients with arthritis, they have much to offer in terms of both experience and objectives, which can be beneficial to the achievement of the ultimate goal of preventing disability from rheumatic diseases. It is the specific assignment of this Work. shop to review the present activities and programs of voluntary and public agencies, with the objective of determining what is being done at the present time and how these programs and activities can be made more effective. 36 Voluntary Agencies that are Concerned with Arthritis The Arthritis Foundation. Within the past year, The Arthritis Foundation has emerged as the voluntary agency that is concerned with both the professional and the lay effort in the field of rheumatic diseases. Formerly, the Arthritis and Rheumatism Foundation, its national pro- gram is concerned, primarily, with both lay and professional education. Through its regional chapters, it is directly involved in the support of arthritis. clinics and in the administration of other facilities that bear directly on the care of the arthritic patient. Its organization is closely inter- twined with that of the American Rheu- matism Association (now, the Rheumatism Section of The Arthritis Foundation), as far as professional guidance and policies are concerned. Currently, efforts are un- derway to make the coordination of the lay and professional medical effort in this field still more effective. The National Foundation, which previously had a pro- gram in arthritis that was directed par- ticularly toward juvenile rheumatoid ar- thritis, has concentrated in other areas since the emergence of The Arthritis Foun. dation as the strong voluntary organiza- tion. The Rheumatism Section 01 The Ar- thritis Foundation (formerly, American Rheumatism Association). This is the pro- fessional organization of physicians who have a special interest in the field of rheu- matic diseases. It currently numbers more than 1,600 members. It provides leader- ship in professional education and fur- nishes professional resources and "know- how" to public education programs of The Arthritis Foundation. Community Hospitals and Medical Cen- ters. There is an accelerating tendency for the hospital to become the focal point in the provision of all aspects of medical care. This is true with respect to both diagnostic resources and treatment facilities. In addi- tion, because the hospital supplies a setting in which the physician can function most effectively and efficiently, it is often only in the hospital that the more refined diag nostic procedures are available. The hos- pital is the setting in which the physical therapist, dietitian, occupational therapist, and social service worker can function most effectively; indeed, in all but a few areas, it is the only place where such indi. viduals and facilities are available. Through their internship and residency training programs, these hospitals exert an im- ' portant influence on professional educa- &on. They are also often the focal point in the training of the paramedical pro- fessions, whose services are so important in the care of the arthritic patient. Hospitals that are associated or aflili- ated with medical schools and medical centers are involved in direct service to patients to the extent that they function to meet community needs. They also serve an important function in the training of individuals in the medical and paramedical professions and in the demonstration of effective organizations and procedures in meeting the needs of the arthritic patient. Arthritis clinics have tended to develop entirely in relationship to hospitals-most frequently, in relationship to hospitals that are concerned with teaching and residency training. The National Foundation pio- neered in the financial support of arthritis centers that serve as demonstration units, and it is projected that continuing efforts in this area will be supported by The Arthritis Foundation. The outpatient department of the hos- pital plays a particularly important role in dealing with the problem of arthritis, since there is need for continuing medical supervision, as well as for episodes of hos- pitalization. Other Voluntary Agencies. Numerous agencies that are concerned with the prob- lems of chronic incapacitating disease in- clude patients with arthritis in their pro- grams. In many areas, such programs as visiting nursing programs are coordinated and, to some extent, supported by the activ- ities of the chapters of The Arthritis Foun. dation. In many areas, there is a lack of effective coordination of these programs into the effort to improve care of arthritic patients. Public Agencies that are Concerned with Arthritis Programs The United States Public Health Service The Bureau of State Services, through its Division of Chronic Diseases, has a combined Diabetes and Arthritis Program, which is responsible for the efforts of the United States Public Health Service in the arthritis field at a national level. The activ- ities of this Program have ranged from the preparation and dissemination of ma- terial for public education to the prepara- tion of recommendations for community arthritis projects and programs in county and local health departments. Its public education activities have been closely CO- ordinated with those of The Arthritis Foun- dation. In some areas, it has cooperated with State health departments and chapters of The Arthritis Foundation to sponsor symposia, postgraduate courses, and dem- onstration programs to provide improved facilities for the care of the arthritis pa- tient. The primary charge of this program is to seek more expeditious application of the scientific techniques we now know and of those that are becoming available through research. Nationcrl Institutes of Health (National Instilute oj Arlhrilis ,urul Metaboli4: I& eases). This research arm of the United States Public Health Service supports a large program for research in arthritis and for the training of research workers in this field. While programs of this Institute may not be directed immediately to the care of the arthritic patient, they indirectly exert an important influence on professional education and in the development of facil- ities for patient care. The centers for re- search and training in research are located in the same institutions that are providing leadership in the development of facilities for care of the arthritic patient. There is a fine tradition of cooperation between the National Institute of Arthritis and Meta- bolic Diseases and The Arthritis Founda- tion. State Health Departments. In most State health departments, no specific ac- tivities are directed solely to arthritis. Most State health departments support a 37 number of projects, throughout the State, that directly or indirectly influence care for the arthritic patient. These may include chronic disease diagnostic clinics, rehabil- itation centers and services, nursing serv- ices to the chronically ill, stimulation of home-care services, with available consul- tation subsidization, homemaker services, and nursing home services. Programs that are concerned with facilities for the care of crippled children and crippled and af- flicted adults may include appropriate patients and arthritis. 38 It is apparent that in several States the activities of the State health departments are closely coordinated with those of the chapters of The Arthritis Foundation. Such activities may include symposia and dis- semination of literature for public educa- tion, the joint sponsoring of symposia for physician education and, also, for the edu- cation of nurses, physical therapists, and social service workers, and the preparation of a directory of arthritis services that are available throughout the state. In sev- eral States, key staff members of the appro- priate division of the State health depart- ment are members of the Medical and Scientific Committee of the State chapter of The Arthritis Foundation. Examples of Activities in Which State Health Departments Have Provided Leadership or Have Participated Pennsylvania: In cooperation with the Pennsylvania chapters of The Arthritis Foundation, two State conferences on ar- thritis have been conducted for medical and paramedical groups. Seven institutes on diet and arthritis have been conducted. Equipment has been made available for physiotherapy demonstration projects. In- stitutes on rehabilitation and restorative services have been conducted. Training programs in rehabilitation have been con- ducted for nursing home staffs. New Jersey: Program activities include promoting community resources for con- trol of arthritis, including continuity of care services, rehabilitation services, and diagnostic services. The department has encouraged and facilitated research stud- ies and provided education in arthritis and allied disorders. Arthritis symposia have been sponsored jointly by the State health department, medical school, and county hospitals. The State health department has prepared a directory of arthritis services that are available in New Jersey, including agencies, clinics, educational materials, physical medicine, and rehabilitation re- sources. Colorado: The State health department cosponsored a three-day institute on "Man- agement and Rehabilitation of Patients with Arthritis" with the Rocky Mountain Chapter of The Arthritis Foundation, the University of Colorado Medical School, and the State department of rehabilitation. Plans were formulated to provide assistance to the Rocky Mountain Chapter of the AF for purchase of equipment for physical therapy home service programs and craft rehabilitation projects. Assistance is also being developed for professional lay edu- cation through the procurement and util- ization of educational materials and audio- visual aids. Other services relate to con- sultation to nursing home administrators, including occupational and physical ther- apy consultants, community homemaker services in Denver, and extension of pro- grams for home nursing care of the sick. Kansas: Courses sponsored in self-help and rehabilitation for nursing home per- sonnel include service to arthritics, as well as to stroke patients. Rehabilitation courses are conducted for registered nurses. Also programs for nursing care of the sick at home are being developed. The Kansas statewide arthritis education pro- gram is a cooperative agreement involving the Kansas Chapter of The Arthritis Foun- dation, the Kansas State Health Depart- ment, and the U.S. Public Health Service. The objectives of this program are to pro- vide up-to-date information to physicians and paramedical personnel on techniques, particularly physical therapy, that are used for care of arthritics. It also seeks to organize and mobilize community resources to improve the care of the arthritic. Minnesota: A project entitled "Home Economists in Rehabilitation" has been sponsored jointly by the State health de- partment, the Minnesota Heart Association, the State agricultural extension service, and the Minnesota Chapter of The Arthritis Foundation. This is a project to assist homemakers with physical handicaps to accept the knowledge that will encourage them to develop both realistic attitudes to- ward homemaking and enable them to accomplish some, or all, of their home- making tasks. A series of four classes are held. They cover different aspects of home- making. This program reached about 160 homemakers in I3 counties in 1963. County and Community Health Depart- ments. It is difficult to get significant in- formation about the activities of county or community health departments in the field of arthritis. It is clear that such health departments are in a position to play a key role in community arthritis projects. An example of the way in which rehabil- itation services to arthritis patients has been extended by a generalized public health nursing agency is provided by Tulsa's arthritis program. The first steps were to ascertain the number of rheumatic disease victims in the community who re- quired home nursing service and to decide on the type of inservice education that would best prepare the nursing division of the City or County health department to take care of them. On the basis of the in- formation and prior experience of a spe- cialized program that had been established by the local chapter of The Arthritis Foun- dation, the staff nurses became acquainted with the patients, familiarized themselves with the patient's disabilities, and gained considerable insight into the needs of these patients, with respect to the medical, nurs- ing, and physical therapy techniques that are needed. This was followed by formal lectures and demonstrations and the par- ticipation of staff nurses in training pro- grams that were available elsewhere. It is of interest that, in one year, about 12 percent of 7,620 visits for nursing care in the home were made to arthritic patients. During the same year, 191 new arthritic patients were admitted to the nursing service. There are also a number of both govern. mentally supported and voluntary organ- izations that are concerned with the provision of diagnostic, treatment, and rehabilitation programs for the chronically ill patient at the community, regional, and national levels, with programs and facil- ities that play an important role in services that are available to the patient with ar- thritis. One of the purposes of this con- ference will he to obtain more information concerning such programs and to develop recommendations for more comprehensive and extended care of the arthritic patient, through coordinated health activities and through the integration of health informa- tion. Educational Activities of Voluntary and Public Agencies Public Education. A sound pattern for the provision of authoritative information on arthritis has developed, usually with The Arthritis Foundation taking leadership in preparing appropriate literature, fre- 39 40 quently with the advice or participation of committees of the Rheumatism Section of The Arthritis Foundation (formerly, American Rheumatism Association). Dis- semination of this information is carried on, to a considerable extent, through the chapters of The Arthritis Foundation, the Division of Chronic Diseases of the United States Public Health Service, and the State health departments. Examples are the booklet entitled, "Strike Back at Arthritis," informational booklets about quackery in the arthritis field, and authoritative in- formation about fact and fancy and the relationship of diet to arthritis. The Ar- thritis Foundation also prepares and dis- tributes informational pamphlets, directed toward the education of the patient that is afflicted with arthritis, that deal with the various types of rheumatic diseases. Professional Education. Several organ- izations are concerned with keeping the medical profession up-to-date on advances in the diagnosis and management of ar- thritic disease. These efforts are usually well coordinated, and several of them are undertaken on a cooperative basis. An example is the "Primer on Rheumatic I%- eases," which is prepared periodically by a committee of the Rheumatism Section of The Arthritis Foundation and published in the Journal of the American Medical Association. Through The Arthritis Foun- dation, copies are distributed to every medical student in his junior or senior year in medical schools throughout the United States and Canada. Information concerning advances in research are dis. seminated in the monthly Bulletin of Rheu- matic Diseases, a joint enterprise of the National Institute of Arthritis and Meta- bolic Diseases and The 4rthritis Founda- tion, which is distributed to approximately 60,000 practicing physicians in the United States, primarily through the chapters of the Arthritis Foundation. A periodic Rheu,matism Review, prepared by a com- mittee of the Rheumatism Section of The Arthritis Foundation, is widely distributed with the financial support of The Arthritis Foundation. Symposia and postgraduate courses that deal with the diagnosis and management of the arthritic are frequently cosponsored or organized by the Rheu- matism Section of The Arthritis Founda- tion, or its regional affiliated societies, and The Arthritis Foundation and its chapters, sometimes, with the joint sponsorship of the State health department. Education of Clinical Specialists in Arthritis. There has been a substantial increase, in the last fifteen years, in op- portunities for advanced training for phy- sicians who wish to concentrate in the field of rheumatic diseases. This has tended to occur, particularly, in centers in which there is an ongoing research program. It has been stimulated by the training grants program of the National Institute of Ar- thritis and Metabolic Diseases (PHS). However, since such training grants have concentrated in the training of younger physicians for research in the field of rheumatic diseases, there has been a real problem, financially, in providing training for men who are not primarily interested in research, but who wish to develop their proficiency in the diagnosis and manage- ment of the arthritic patient. The Arthritis Foundation, both at the national level and through its local chapters, has tried to meet this need to a limited extent. There is a very real need for financial support for men who are seeking advanced train- ing in this field in order that they may be better prepared to provide care for the arthritic patient. We are not aware of comparable train- ing opportunities for the other professions that are concerned with providing health care. Chapters of The Arthritis Foundation and governmental health agencies have or- ganized one and two-day symposia to pro- vide public health nurses, visiting nurses, nutritionists, .physical therapists, social service workers, vocational, recreational, and social rehabilitation workers with some information concerning the particular problems of the arthritic. Most of the real experts in these paramedical professions, as far as the arthritic patient is concerned, have developed through "on the job train- ing" by participating in the activities of an arthritis center, rather than through an organized program of training. Hospitalization Problems Organizational a& Financial Considera- tions. Both hospital organization and plan- ning and the patterns of defraying the costs of hospitalization in this country have tended to center on care for the patient with acute illness. There is a limitation to the extent to which such patterns can be adapted to the needs of the patient with chronic disabling disease. Physical facilities and administrative organizations, which are quite suitable for the care of patients who are hospitalized for a week or two, are often not appropriate for providing optimum care for patients whose hospitalization is a matter of months. Similarly, hospitaliza- tion insurance plans, which are adequate in meeting the cost of acute illness, are in- adequate when applied to patients who require long-term hospitalization. Hospitalization programs for the ar- thritic patient have tended to develop in training centers, usually in connection with medical schools. The problems that were cited above become more pertinent if rec- ommendations are considered for the extension of the development of such re- sources in the community and voluntary hospitals. An easy solution might appear to be the development of hospital facilities that are designed, organized, and financed to meet the specific needs of the arthritic patient. But there are obvious disadvan- tages in the development of such facilities: They tend to become isolated from the mainstream of medical progress and care, and they are difficult to integrate with fol- lowup services that are much more likely to be part of an overall community or regional program. It is apparent that those who set out to make realistic recommendations for pro- viding adequate hospitalization facilities for patients with arthritis must weigh the above considerations carefully. Standards of Ezcelknce in Hospitahza- tion Resources. The most important aspect of the quality of care that is provided dur- ing the hospitalization of patients with arthritis is clearly dependent on the pro- fessional qualifications of the staff. In addition to the general diagnostic and con- sultation services that are usually found in a general hospital, the special skills of men who are trained in rheumatology, ortho- pedic surgery, and physical medicine are required. Special training is also needed in the paramedical health professions that are concerned with the care of such pa- tients. These include nursing, social serv- ice, vocational rehabilitation, and psy- chological testing workers. The public and voluntary agencies can be most effective in providing support for the training of such individuals, and also in insuring adequate budgetary provision for the variety of skills that must be brought to bear in the care of the arthritic patient. Continuing Medical and Social Supervision Continuing medical and social super- vision is usually provided by outpatient clinics that are closely affiliated with the institution that is providing the resources 42 for hospitalization of the arthritic patient. It is clear that the organizational and finan- cial problems, as well as the maintenance of quality in such continuing activities, are dependent on much the same factors as those that were outlined above, under the heading of hospitalization. However, it is in this area of continuing supervision that the role of the physician becomes less pre- dominant and dependence on adequate programs in the home nursing, physical medicine, and social aspects become in- creasingly important. It is also in this area that integration with other community pro- grams that deal with the chronically ill patient can be most effectively utilized. Currently, most of the activities that are directed toward this aspect of the care of the arthritic patient have developed through the local and regional chapters of The Arthritis Foundation. Such activities have i