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6 Specialist management: needs and benefits
6 Specialist management: needs and benefits Gerold Stucki MD, MS Assistant Professor of Rheumatology, Physical Medicine and Rehabilitation Department of Rheumatology and Institute of Physical Medicine, University Hospital, Gloriastrasse 25, CH-8091 ZE~rich, Switzerland
In increasingly cost-conscious, accountable and integrated health-care systems, the appropriate role of speciality care is under scrutiny. The data on the impact of rheumatologist care on outcomes in patients with rheumatoid arthritis (RA) is limited and inconclusive. However, based on a review of processes of care known to be related to superior patient outcomes it is suggested that rheumatologists should be the lead physicians in patients with RA. Rheumatologists but usually not generalists have the experience necessary to make an early diagnosis and to initiate appropriate disease modifying anti-rheumatic drug (DMARD) treatment. Rheumatologists have an in-depth understanding of new assessment methods to optimize medical treatment and to make best use of and co-ordinate multidisciplinary care. To avoid delay of diagnosis and initiation of treatment, patients with polyarthritis should be referred to rheumatologists as soon as possible. This requires that access to rheumatologist care is guaranteed. Key words: rheumatoid arthritis; quality management; outcomes; specialist.
In increasingly cost-conscious, accountable, and integrated health-care systems, the appropriate role of speciality care is under scrutiny (Esdaile et al, 1995). For example in the UK, the 1990 NHS and Community Care Act has led to fundamental changes in the delivery of health care (Symmons et al, 1996). Purchasers of health care are now required to build up a profile of the health-care needs of their local population and to direct the resources to address these needs. This has led to changing patterns of rheumatology manpower and practice. In many countries generalists increasingly act as gatekeepers for specialist referral, emergency and hospital care limiting access to specialist management (Gabriel, 1996). At the same time, primary care physicians seem to provide care to patients with increasingly more complex problems resulting in a shift of costs from speciality to primary care (Crump et al, 1995). In other environments such as the United States with an oversupply of specialists and a relative shortage of generalists, rheumatologists may Bailli#re's Clinical Rheumatology-Vol. 11, No. 1, February 1997 ISBN 0-7020-2265-9 0950-3579/96/010097 + 11 $12.00/00
97 Copyright © 1997, by Bailliere Tindall All rights of reproduction in any form reserved
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themselves increasingly act as primary care providers. One of every-five Americans receives continuing medical care from a specialist (Aiken et al, 1979). In a recent commentary, Gabriel has reviewed the pros and cons of primary care provided by specialists and generalists (Gabriel, 1996). With regard to accessibility, costs, education, medical knowledge and skills, competence about psychosocial, preventive, and community aspects of care and crossdisciplinary skills, both the specialists and generalists can refer to studies supporting their respective perspectives. With regard to patient outcomes in a variety of diseases, most studies have found no difference when generalists are compared with specialists (Garg et al, 1979; Dietrich and Goldberg, 1984; Strauss et al, 1986; Franks and Eisinger, 1987). Some studies favoured specialist care and others favoured generatist care. With respect to RA there was one study that favoured rheumatologist care over primary physician care (Ward et al, 1993). The problem with these studies is their methodological limitations including referral-based rather than population based cohorts, adjustment for disease severity, and small sample sizes. Gabriel concluded that arguments advanced by advocates of both the generalists' and the specialists' perspectives overall are inconclusive and pointed to the need for large-scale population-based, comparative studies with longitudinal follow-up.
Assessing speciality care in RA The changing environment for speciality care raises important questions with respect to management of RA. There are many ways how the role and contribution of rheumatologists could be examined. From a quality perspective one distinguishes outcomes, processes and structure (Stucki and Sangha, 1996). Outcomes refer to the effects, e.g. reduction of pain, improvement or prevention of physical functional disability, prevention of joint destruction, improvement of quality of life or reduction of mortality. Structure refers to the resources necessary to perform a medical service. Resources include buildings, instruments but also education of physicians. The assumption is, that resources and education translate into quality of care. Process refers to the intervention itself, e.g. the making of a diagnosis or the selection and planning of an intervention. Although there is one study (Ward et al, 1993) that favours rheumatologist care over primary physician care in rheumatoid arthritis, the data with respect to the impact of speciality care on patient 'outcomes' in patients with RA is limited and inconclusive. In this paper the 'processes of care' of RA patients known or thought to be important and/or related to superior patient outcomes are thus reviewed. With identification of the processes relevant to optimal management of RA, we can define needs and derive potential benefits if these needs are met. Identification of processes and needs also allows us critically to examine the respective role of generalist and specialist care.
Specialist management 99 Needs and benefits of speciality care Timely diagnosis and initiation of appropriate disease modifying anti-rheumatic drug (DMARD) treatment
RA has a major impact on function and quality of life and frequently affects patients in their most productive years causing major economic loss (Allaire et al, 1994). Studies show that patients with active, polyarticular, rheumatoid factor-positive RA have a 70% probability of developing joint damage or erosions within 2 years of the onset of disease (Brook and Corbett, 1977; M6ttonen, 1988; Fuchs et al, 1989; Van der Heijde et al, 1992a; Plant et al, 1994). Other studies suggest that early aggressive treatment may alter the disease course, reduce morbidity, maintain function, prolong life and reduce health-care costs (Van der Heide et al, 1989; Ward et al, 1993; M6tt6nen et al, 1996; Van der Heijde et al, 1996). Thus, most rheumatologists who care for patients with RA favour aggressive treatment early in the course of the disease before joints are damaged. The initiation of DMARD therapy should not be delayed beyond 3 months for any patient with an established diagnosis who, in spite of adequate treatment with NSAIDs, has ongoing joint pain, significant morning stiffness or fatigue, active synovitis or persistent elevation of the ESR or CRP level. Any untreated patient with persistent synovitis and joint damage already documented by joint examination or radiography should have DMARD treatment started promptly to prevent or slow further damage (Kwoh et al, 1996). Early aggressive treatment depends on timely diagnosis and initiation of appropriate therapy. However, diagnosis of RA may be difficult in early disease (Arnett et al, 1988). Studies show that primary care physicians are less likely to make correct or timely diagnoses of arthritis (Jackson and Williams, 1993; Panush et al, 1995). Bjelle and Magi (1981) found that only 20% of referrals from primary care to the rheumatology department gave a tentative diagnosis and half of these suggestions were changed after examination. Furthermore, patients with RA are likely to be referred late (Hanly et al, 1984; Chan et al, 1994). Chan et al found that RA diagnosis is usually delayed for several months after symptoms begin, in large part because of delay in diagnosis by the physician. Currently, the goal of initiation treatment early may thus be unrealistic for most patients. It is thus suggested that patients with polyarthritis be referred to rheumatologist evaluation and, if appropriate, initiation of DMARD treatment (see Practice points). Recognition of the need for timely referral is an important educational goat in the teaching of students and generalists. Guidelines developed in collaboration by rheumatologists and primary care physicians (Kwoh et al, 1996) are promising in this respect. Training in rheumatology and access to a physician experienced in the management of rheumatic diseases seems important to improve the accuracy of diagnoses (Esdaile et al, 1995). The reasons for delay in referral should be studied and appropriate action taken to address this problem. In countries with different provider settings (e.g. fee for service, managed care) the settings associated with earlier diagnosis and initiation of appropriate treatment
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and potential obstacles (e.g. fear to 'lose' a patient to the specialist,- no emergency access to specialist services, long waiting times) c o u l d be identified.
Practice points •
Diagnostic uncertainty
•
Confirmation of diagnosis
•
Selection and initiation of DMARD treatment
•
Adjustment of DMARDs along the course of disease
•
Multidisciplinary care and in-patient services
Selection and optimal adjustment of DMARD treatment
Many factors influence the choice of a DMARD for an individual patient. Consideration of the patient perspective is extremely important to improve compliance. From the patient's perspective, the convenience of administration of the drug, the requirements of the monitoring programme, the costs of the medication and its monitoring, the time until expected benefit, and the frequency and potential seriousness of adverse reactions are important considerations. A physician's experience with simple measures such as the prescription of folic acid to minimize adverse effects with methotrexate therapy may decide on whether a patient will stay on DMARD treatment and whether the dose can be increased to the efficacious range.
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Bjelte has pointed out that because of the relatively low prevalence of patients with RA and relatively low prevalence of DMARD treated patients, primary care physicians lack sufficient experience with these drugs (Bjelle, 1996). While improved graduate and postgraduate curricula may improve theoretical knowledge (Glazier et al, 1995) they are unlikely to provide the necessary experience required for handling DMARDs. Once initiated, the importance of optimal adjustment of DMARDs to control disease activity can not be overemphasized. Because untreated or insufficiently treated disease activity is associated with joint destruction and worse health outcomes, it is unnecessary to use DMARD therapy. Because disease activity is suppressed with potentially toxic drugs it is critical to find the minimally efficacious dose as precisely as possible. Since there are only few drugs available and DMARD therapy may take up to 6 months before being effective, much is lost if an efficacious but overdosed DMARD causes intolerable side-effects and needs to be stopped. Control of disease activity in RA is a measurement-improvement process with the goal to reduce inflammatory activity and pain in the shortterm, and damage and consequently disability in the longterm (Stucki and Sangha, 1996). Within this dynamic framework disease activity and damage are intermediate clinical outcomes while pain and disability are primary patientoriented outcomes. Standardized, valid, reliable and sensitive measurement of disease activity (van der Heijde et al, 1992b; van Gestel et al, 1996) and patient outcomes (Fries et al, 1980; Stucki et al, 1995) using psychometrically sound questionnaires has made it possible to quantify the rather abstract concept of disease process in RA, to adjust treatment based on empirically derived guidelines (van Gestel et al, 1996) and to document and communicate decisions based on quantitative data (Stucki and Sangha, 1996). However, use of these measures is not trivial and meaningful interpretation requires familiarity with scores that can only be achieved by regular practice. In practice, efficient use of patient questionnaires and clinical indices such as the DAS may be best done within an organization similar to a laboratory organization requiring the necessary infrastructure. It is thus suggested that rheumatologists should select and optimize DMARD treatment using new standardized assessment methods for both, clinical status and patient outcomes. This requires that rheumatologists are actively and regularly involved in the care of patients with RA. In early RA the intervals often are 3 months while in well controlled disease the interval may be longer (Stucki and Sangha, 1996). It needs to be studied whether use of standardized measures and measurement-improvement concepts result in improved outcomes. Access to specialist management
Emphasizing the need for timely specialist referral and continuous involvement goes hand in hand with access to specialist management. However, access seems to be a problem in some environments. Long waiting times for the management of musculo-skeletal disorders have been singled out by general practitioners as a major deficiency (Hicks
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and Baker, 1991). Smith et al (1996) have demonstrated the need for. an acute rheumatology service in the UK. While RA was not among the reasons for emergency referrals (needing active treatment within 24 hours), RA was the most common diagnosis for urgent referrals (needing advice within 48 hours referral). Availability of acute rheumatology service may be an important 'safety valve' (Smith et al, 1996) and may help primary care physicians to respond to the pressure from patients for referral (Armstrong et al, 1991). Timely access to expert consultation may prevent inappropriate use of diagnostic procedures (e.g. unnecessary laboratory tests) and overtreatment (e.g. inappropriate use of steroids). In countries with a shortage of rheumatology specialist care, new innovative forms of specialist care have been considered. In Sweden, many rheumatologist units now send mobile teams on regular visits to primary care centres in a combined consultation-teaching role (Bjelle, 1996). We need to know more about the needs of the primary care physicians. What are the problems and how can we improve access to specialist management? It is also suggested to examine the reasons for delay in referral and to test whether restrictions in accessibility of specialist care is important.
Longitudinal, multidisciplinary care While there is a need for regular rheumatologist care, other health-care professionals have an important role in RA disease management. In early RA the patients need to be instructed by rehabilitation specialists on how to protect their joints, maintain a range of motion of their joints, conserve energy and strengthen their muscles. During the course of disease, managed or co-ordinated multidisciplinary care is efficacious in improving health status and quality of life, and to maintain function and productivity of patients with RA (Esdaile et al, 1995; Kwoh et al, 1996). For example, prescribed exercise programmes reduce pain and improve function for patients with rheumatoid arthritis (Semble et al, 1990). Also, patient education programmes and psychoeducational interventions improve function and quality of life, reduce physician visits by 40% and decrease health care costs (Lorig et al, 1993). Depending on the patient's problems, rheumatologic care utilizes the expertise of rheumatology, orthopaedics, podiatry, nursing, physical therapy, occupational therapy, social work, vocational counselling and clinical psychology. The perspectives and skills of different disciplines are essential for optimal outcomes.
Multidisciplinary care for patients with RA varies substantially across settings and along disease course. The hospital rehabilitation unit usually provides the most comprehensive and highly structured team. Instead, in many out-patient care units and in care managed by rheumatologists in private practice settings, specialists often function autonomously. Particularly in the latter settings the rheumatologist has an important role in the integration and co-ordination of efforts.
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Integration of providers in the patient care team has an influence on patient experience (Gerteis et al, 1993). Regardless of setting, there are frequent problems encountered in the provision of health care involving multiple providers. A major source of tension and fear among patients is their sense of the competence and efficiency of their care providers. Patients are concerned about who is in charge, whether responsibilities are clear and whether the providers work together smoothly and effectively sharing information and making joint decisions. They are concerned with whether providers communicate effectively, deliver consistent messages to both the patient and the family. In focus groups, Gerteis et al (1993) found that patients emphasized the need for providers to discuss questions related to their status and prognosis in a way that alleviated rather than exacerbated fear. Frequently, they are concerned about the impact of their illness on their ability to care for themselves and thus the burden it would impose on their family. While rheumatologists should be able to make best use of multidisciplinary care, the benefits of rheumatologists co-ordinating multidisciplinary care needs to be demonstrated.
Rheumatologist-patient relationship At the start of his or her disease the patient is often in the role of a passive recipient of health care, and relies upon the physician to resolve the problem (Holman, 1994). The primary focus is on diagnosis and initiation of DMARD treatment. With chronic illness, the patient becomes experienced and it is critical to engage the patient in an effective, consistent, and continuing partnership for managing the disease. Arthritis patients, their families and other informed consumers are more satisfied with care when it is co-ordinated by a physician knowledgeable in the illness (Tucker et al, 1994). A consistent provider-patient relationship based on trust and understanding is essential to a long-term dialogue as the physician guides the patient through the maze of medical choices and the vicissitudes of his/her life (Kwoh et al, 1996). Continuity of care also provides patients with security in the face of an uncertain future. Health-care providers and organizations have an ethical obligation to preserve doctor-patient relationships in chronic illnesses (Pellegrino, 1995; Quill and Cassel, 1995). A longitudinal treatment plan needs to be developed with the patient. The discussion should address disease prognosis and treatment options, taking into account the costs, adverse effects, expected time for response and monitoring requirements of pharmacological agents, in addition to the patient's preferences. Expectations for treatment and potential barriers to carrying out the recommendations should be discussed. A range of strategies designed to enhance physician-patient communication have been found to be effective in improving health outcomes (Stewart, 1995). Also, in ambulatory-care settings patient education and training in how to communicate more effectively with physicians may enhance outcomes (Greenfield et al, 1985; Kaplan et al, 1989).
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Practice points •
Information Take enough time Use patient language Be open to discuss any upcoming problems Provide educational materials Encourage patient education
•
Continuity of care Engage patient in partnership Establish treatment plan and goals See patient at regular intervals Be available to resolve urgent problems Guide patient through treatment choices
•
DMARD treatment Anticipate adverse effects and discuss potential barriers
•
Assessment of disease consequences Involve patient using questionnaires on symptoms and disability
•
Family Encourage family involvement
•
Interaction between health-care providers Ensure consistent information Show appreciation for contribution of others
Essential to the patient's ability to contribute to health-care decisions is information. This requires that rheumatologists take time to provide information on clinical status and progress in language that patients can understand. Patients also need to be given information on their treatment and the relative costs and benefits of treatment alternatives. The extent and nature of such communication is an important dimension of patient experience. It has been demonstrated that patients can be effectively educated (Lindroth et al, 1995) and the success of such programmes can be properly monitored (Edworthy et al, 1995). Useful patient education materials are available from the Arthritis Foundations. Patients often want and expect family members to be involved in decisions. Relatives and/or friends of patients are frequently involved in assisting with care and can have a substantial impact on patient experience and ultimately their quality of life. They may watch over patients, remind patients about treatments and medications and assist with personal care in the home (Ellers and Walker, 1993). Some health-care settings encourage involvement of family and friends, while others create barriers making it more difficult for them to assist and participate. This will greatly influence a patient's experience.
Specialist management 105
Summary In increasingly cost-conscious, accountable and integrated health-care systems, the appropriate role of speciality care is under scrutiny. The data on the impact of rheumatologist care on outcomes in patient with RA are limited and inconclusive. Based on a review of processes of care known to be related to superior patient outcomes it is suggested that rheumatologists should be the lead physicians in patients with RA. Rheumatologists can make best use of and co-ordinate multidisciplinary care. However, the benefits of rheumatologists co-ordinating multidisciplinary care needs to be demonstrated. A major problem in the management of early RA is delay of diagnosis and initiation of appropriate treatment although we need more data about the importance of the problem. Currently, the goal of initiating treatment early may be unrealistic for many patients. Teaching the importance of timely referral is an important goal in the training of students and generalists. Guidelines developed in collaboration with rheumatologists and primary care physicians (Kwoh et al, 1996) are promising in this respect. It is suggested that the reasons for delay in referral and the restrictions in accessibility to specialist care should be examined. Rheumatologists but not generalists have the experience necessary to initiate appropriate DMARD treatment and to optimize treatment using new standardized methods for both clinical and patient-oriented assessment. Rheumatologists should thus actively and regularly be involved in the management along the disease course. It needs to be studied whether use of standardized measures and measurement-improvement concepts result in improved outcomes.
References Aiken LH, Lewis CE, Craig J e t al (1979) The contribution of specialists to the delivery of primary care. New England Journal of Medicine 300: 1363-1370. Allaire SL, Prashker M & Meenan R (1994) The costs of RA. Pharmoeconomics 6: 513-522. Armstrong D, Fry J & Armstrong P (1991) Doctors' perceptions of pressure from patients for referral. British Medical Journal 302:1186-1188. Arnett FC, Edworthy SM, Bloch DA et al (1988) The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis and Rheumatism 31: 315-324. Bjelle A (1996) Primary care and rheumatology in musculoskeletal disorders: bridging the gap. Journal of Rheumatology 23: 205-206. Bjelle A & Magi M (1981) Rheumatic disorders in primary care. A study of two primary care centres and a review of previous Swedish reports on primary care. Scandinavian Journal of Rheumatology 10:331-341. Brook A & Corbett M (1977) Radiographic changes in early RA. Annals of the Rheumatic Diseases 36: 71-73. *Chan KW, Felson DT, Yood RA & Walker AM (1994) The lag time between onset of Symptoms and diagnosis of rheumatoid arthritis. Arthritis and Rheumatism 37: 814-820. Crump BJ, Panton R, Drummond MF et al (1995) Transferring the costs of expensive treatments from secondary to primary care. British Medical Journal 310: 509-512.
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Dietrich AJ & Goldberg H (1984) Preventive content of adult primary care: do generalists and subspecialist~s differ? American Journal of Public Health 74: 223-227. Edwnrthy SM, Devins GM & Watson MM (1995) The arthritis knowledge questionnaire. A test for measuring patient knowledge of arthritis and its self-management. Arthritis and Rheumatism 38: 590-600. Ellers B & Walker JD (1993) Facilitating the transition out of the hospital. In Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL (eds) Through the Patient's Eyes, pp 204-221. San Francisco: Jossey-Bass Inc. * Esdaile J, Liang MH, Clarke AE et al (1995) Speciality care for chronic disease in integrated care: the role of the rheumatologist in arthritis, rheumatic, and musculoskeletal disease management. American College of Rheumatology, Atlanta. Franks P & Eisinger S (1987) Adverse perinatal outcomes: is physician specialty a risk factor? Journal of Family Practice 24: 152-156. Fries JF, Spitz PW, Kraines RG & Holman HR (1980) Measurement of patient outcome in arthritis. Arthritis and Rheumatism 23: 137-145. Fuchs HA, Kaye JJ, Callahan LF et al (1989) Evidence of significant radiographic damage in rheumatoid arthritis within the first 2 years of disease. Journal of RheumatoIogy 16: 585-591. *Gabriel SE (1996) Primary care: Specialists or generalists. Mayo Clinics Proceedings 71: 415-419. Garg ML, Mulligan JL, Gliebe WA & Parekh RR (1979) Physician specialty, quality and cost of inpatient care. Social Science and Medicine 13C: 187-190. Gerteis M, Edgman-Levitan S, Daley J & Delbanco TL (1993) Medicine and health from the patient's perspective. In Gerteis M, Edgman-Levitan S, Daley J & Delbanco TL (eds) Through the Patient's Eyes, pp 1-15. San Francisco: Jossey-Bass Inc. van Gestel AM, Prevoo MLL, van 't Hof MA et al (1996) Development and validation of the European league against rheumatism response criteria for rheumatoid arthritis. Arthritis and Rheumatism 39(1): 34-40. * Glazier R, Buchbinder R & Bell M (1995) Critical appraisal of continuing medical education in the rheumatic diseases for primary care physicians. Arthritis and Rheumatism 38: 533-538. Greenfield S, Kaplan S & Ware JE (1985) Expanding patient involvement in care: Effects on patient outcomes. Annals of Internal Medicine 102: 520-528. *Hanly JG, McGregor A, Black C & Bresnihan B (1984) Late referral of patients with rheumatoid arthritis to rheumatologists. Irish Journal of Medical Science 153:316-318. van der Heide A, Jacobs JWG, Bijlsma JWJ et al (1996) The effectiveness of early treatment with 'second line' antirheumatic drugs: a randomized, controlled trial. Annals of Internal Medicine 124: 699-707. van der Heijde DM, van Riel PL, Nuver-Zwart IH et al (1989) Effects of hydroxychloroquine and sulfasalazine on progression of joint damage in rheumatoid arthritis. Lancet i: 1036-1038, van der Heijde DMFM, van Leeuwen MA, van Riel PLCM et al (1992a) Biannual radiographic assessments of hands and feet in a three-year prospective follow-up of patients with early rheumatoid arthritis. Arthritis and Rheumatism 35: 26-34. van der Heijde DMFM, van 't Hof MA, van Riel PLCM et al (1992b) Validity of single variables and composite indices for measuring disease activity in rheumatoid arthritis. Annals of Rheumatic Diseases 51: 177-181. Hicks NR & Baker IA (1991) General practitioners' opinions of health services available to their patients. British Medical Journal 302: 991-993. Holman HR (1994) Thought barriers to understanding rheumatic diseases. Arthritis and Rheumatism 37: 1565-1572. Jackson CG & Williams HJ (1993) Arthritis and Rheumatism 36:143 (abstract). Kaplan SH, Greenfield S & Ware JE (1989) Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Medical Care 27: 110-127. * Kwoh KC, Simms RW, Anderson LG et al (1996) Guidelines for the management of rheumatoid arthritis. Arthritis and Rheumatism 39: 713-722. Lindroth Y, Bauman A, Brooks PM & Priestley D (1995) A 5-year follow-up of a controlled trial of an arthritis education programme. British Journal of Rheumatology 34: 647-652. Lorig KR, Mazonson PD & Holman HR (1993) Evidence suggesting that health education for
Specialist management 107 self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis and Rheumatism 36: 439-446. M/Stt/~nen TT (1988) Prediction of erosiveness and rate of development of new erosions in early rheumatoid arthritis. Annals of the Rheumatic Diseases 47: 648-653. M/~tt6nen T, Paimela L, Ahonen J et al (1996) Outcome in patients with early rheumatoid arthritis treated according to the 'sawtooth' strategy. Arthritis and Rheumatism 39:
996-1005. Panush RS, Carias K, Kramer N & Rosenstein ED (1995) Acute arthritis in the hospital: comparison of rheumatologic with nonrheumatologic care. Clinical Rheumatology 1: 74-80. Pellegrino ED (1995) Nonabandonment: an old obligation revisited. Annals of Internal Medicine 122: 377-378. Plant MJ, Saklatvala J, Borg AA et al (1994) Measurement and prediction of radiological progression in early rheumatoid arthritis. Journal of Rheumatology 21:1808-1813. Quill TE & Cassel CK (1995) Nonabandonment: a central obligation for physicians. Annals of Internal Medicine 122: 368-374. Semble EL, Loeser RF & Wise CM (1990) Therapeutic exercise for rheumatoid arthritis and osteoarthritis. Seminars in Arthritis and Rheumatism 20: 32-40. " Smith EC, Berry H & Scott DL (1996) The clinical need for an acute rheumatology referral service. British Journal of Rheumatology 35: 389-391. Stewart MA (1995) Effective physician-patient communication and health outcomes: a review. Canadian Medical Association 152(9): 1423-1433. Strauss MJ, Conrad D, LoGerfo JP et al (1986) Cost and outcome of care for patients with chronic obstructive lung disease: analysis by physician specialty. Medical Care 24: 915-924. *Stucki G & Sangha O (1996) Clinical quality management: putting the pieces together. Arthritis Care and Research 9: 405-412. 8tucki G, Liang MH, Stucki S et al (1995) A self-administered Rheumatoid Arthritis Disease Activity Index (RADAI) for epidemiological research: psychometric properties and correlation with parameters of disease activity. Arthritis and Rheumatism 6: 795-798. Symmons DPM, Bankhead CR, Griffiths I & Shipley M (1996) Changing patterns of rheumatotogy manpower and practice in the UK in the 1990s. British Journal of Rheumatology 35: 483-488. Tucker LB, Allaire SH, DeNardo BA et al (1994) The role of subspecialty care for children with juvenile rheumatoid arthritis (JRA). Arthritis and Rheumatism 37: $419. *Ward MM, Leigh JP & Fries JF (1993) Progression of functional disability in patients with rheumatoid arthritis: associations with rheumatology subspecialty care. Archives of Internal Medicine 153: 2229-2237.
In increasingly cost-conscious, accountable and integrated health-care systems, the appropriate role of speciality care is under scrutiny. The data on the impact of rheumatologist care on outcomes in patients with rheumatoid arthritis (RA) is limited and inconclusive. However, based on a review of processes of care known to be related to superior patient outcomes it is suggested that rheumatologists should be the lead physicians in patients with RA. Rheumatologists but usually not generalists have the experience necessary to make an early diagnosis and to initiate appropriate disease modifying anti-rheumatic drug (DMARD) treatment. Rheumatologists have an in-depth understanding of new assessment methods to optimize medical treatment and to make best use of and co-ordinate multidisciplinary care. To avoid delay of diagnosis and initiation of treatment, patients with polyarthritis should be referred to rheumatologists as soon as possible. This requires that access to rheumatologist care is guaranteed. Key words: rheumatoid arthritis; quality management; outcomes; specialist.
In increasingly cost-conscious, accountable, and integrated health-care systems, the appropriate role of speciality care is under scrutiny (Esdaile et al, 1995). For example in the UK, the 1990 NHS and Community Care Act has led to fundamental changes in the delivery of health care (Symmons et al, 1996). Purchasers of health care are now required to build up a profile of the health-care needs of their local population and to direct the resources to address these needs. This has led to changing patterns of rheumatology manpower and practice. In many countries generalists increasingly act as gatekeepers for specialist referral, emergency and hospital care limiting access to specialist management (Gabriel, 1996). At the same time, primary care physicians seem to provide care to patients with increasingly more complex problems resulting in a shift of costs from speciality to primary care (Crump et al, 1995). In other environments such as the United States with an oversupply of specialists and a relative shortage of generalists, rheumatologists may Bailli#re's Clinical Rheumatology-Vol. 11, No. 1, February 1997 ISBN 0-7020-2265-9 0950-3579/96/010097 + 11 $12.00/00
97 Copyright © 1997, by Bailliere Tindall All rights of reproduction in any form reserved
98
G. Stucki
themselves increasingly act as primary care providers. One of every-five Americans receives continuing medical care from a specialist (Aiken et al, 1979). In a recent commentary, Gabriel has reviewed the pros and cons of primary care provided by specialists and generalists (Gabriel, 1996). With regard to accessibility, costs, education, medical knowledge and skills, competence about psychosocial, preventive, and community aspects of care and crossdisciplinary skills, both the specialists and generalists can refer to studies supporting their respective perspectives. With regard to patient outcomes in a variety of diseases, most studies have found no difference when generalists are compared with specialists (Garg et al, 1979; Dietrich and Goldberg, 1984; Strauss et al, 1986; Franks and Eisinger, 1987). Some studies favoured specialist care and others favoured generatist care. With respect to RA there was one study that favoured rheumatologist care over primary physician care (Ward et al, 1993). The problem with these studies is their methodological limitations including referral-based rather than population based cohorts, adjustment for disease severity, and small sample sizes. Gabriel concluded that arguments advanced by advocates of both the generalists' and the specialists' perspectives overall are inconclusive and pointed to the need for large-scale population-based, comparative studies with longitudinal follow-up.
Assessing speciality care in RA The changing environment for speciality care raises important questions with respect to management of RA. There are many ways how the role and contribution of rheumatologists could be examined. From a quality perspective one distinguishes outcomes, processes and structure (Stucki and Sangha, 1996). Outcomes refer to the effects, e.g. reduction of pain, improvement or prevention of physical functional disability, prevention of joint destruction, improvement of quality of life or reduction of mortality. Structure refers to the resources necessary to perform a medical service. Resources include buildings, instruments but also education of physicians. The assumption is, that resources and education translate into quality of care. Process refers to the intervention itself, e.g. the making of a diagnosis or the selection and planning of an intervention. Although there is one study (Ward et al, 1993) that favours rheumatologist care over primary physician care in rheumatoid arthritis, the data with respect to the impact of speciality care on patient 'outcomes' in patients with RA is limited and inconclusive. In this paper the 'processes of care' of RA patients known or thought to be important and/or related to superior patient outcomes are thus reviewed. With identification of the processes relevant to optimal management of RA, we can define needs and derive potential benefits if these needs are met. Identification of processes and needs also allows us critically to examine the respective role of generalist and specialist care.
Specialist management 99 Needs and benefits of speciality care Timely diagnosis and initiation of appropriate disease modifying anti-rheumatic drug (DMARD) treatment
RA has a major impact on function and quality of life and frequently affects patients in their most productive years causing major economic loss (Allaire et al, 1994). Studies show that patients with active, polyarticular, rheumatoid factor-positive RA have a 70% probability of developing joint damage or erosions within 2 years of the onset of disease (Brook and Corbett, 1977; M6ttonen, 1988; Fuchs et al, 1989; Van der Heijde et al, 1992a; Plant et al, 1994). Other studies suggest that early aggressive treatment may alter the disease course, reduce morbidity, maintain function, prolong life and reduce health-care costs (Van der Heide et al, 1989; Ward et al, 1993; M6tt6nen et al, 1996; Van der Heijde et al, 1996). Thus, most rheumatologists who care for patients with RA favour aggressive treatment early in the course of the disease before joints are damaged. The initiation of DMARD therapy should not be delayed beyond 3 months for any patient with an established diagnosis who, in spite of adequate treatment with NSAIDs, has ongoing joint pain, significant morning stiffness or fatigue, active synovitis or persistent elevation of the ESR or CRP level. Any untreated patient with persistent synovitis and joint damage already documented by joint examination or radiography should have DMARD treatment started promptly to prevent or slow further damage (Kwoh et al, 1996). Early aggressive treatment depends on timely diagnosis and initiation of appropriate therapy. However, diagnosis of RA may be difficult in early disease (Arnett et al, 1988). Studies show that primary care physicians are less likely to make correct or timely diagnoses of arthritis (Jackson and Williams, 1993; Panush et al, 1995). Bjelle and Magi (1981) found that only 20% of referrals from primary care to the rheumatology department gave a tentative diagnosis and half of these suggestions were changed after examination. Furthermore, patients with RA are likely to be referred late (Hanly et al, 1984; Chan et al, 1994). Chan et al found that RA diagnosis is usually delayed for several months after symptoms begin, in large part because of delay in diagnosis by the physician. Currently, the goal of initiation treatment early may thus be unrealistic for most patients. It is thus suggested that patients with polyarthritis be referred to rheumatologist evaluation and, if appropriate, initiation of DMARD treatment (see Practice points). Recognition of the need for timely referral is an important educational goat in the teaching of students and generalists. Guidelines developed in collaboration by rheumatologists and primary care physicians (Kwoh et al, 1996) are promising in this respect. Training in rheumatology and access to a physician experienced in the management of rheumatic diseases seems important to improve the accuracy of diagnoses (Esdaile et al, 1995). The reasons for delay in referral should be studied and appropriate action taken to address this problem. In countries with different provider settings (e.g. fee for service, managed care) the settings associated with earlier diagnosis and initiation of appropriate treatment
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and potential obstacles (e.g. fear to 'lose' a patient to the specialist,- no emergency access to specialist services, long waiting times) c o u l d be identified.
Practice points •
Diagnostic uncertainty
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Confirmation of diagnosis
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Selection and initiation of DMARD treatment
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Adjustment of DMARDs along the course of disease
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Multidisciplinary care and in-patient services
Selection and optimal adjustment of DMARD treatment
Many factors influence the choice of a DMARD for an individual patient. Consideration of the patient perspective is extremely important to improve compliance. From the patient's perspective, the convenience of administration of the drug, the requirements of the monitoring programme, the costs of the medication and its monitoring, the time until expected benefit, and the frequency and potential seriousness of adverse reactions are important considerations. A physician's experience with simple measures such as the prescription of folic acid to minimize adverse effects with methotrexate therapy may decide on whether a patient will stay on DMARD treatment and whether the dose can be increased to the efficacious range.
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Bjelte has pointed out that because of the relatively low prevalence of patients with RA and relatively low prevalence of DMARD treated patients, primary care physicians lack sufficient experience with these drugs (Bjelle, 1996). While improved graduate and postgraduate curricula may improve theoretical knowledge (Glazier et al, 1995) they are unlikely to provide the necessary experience required for handling DMARDs. Once initiated, the importance of optimal adjustment of DMARDs to control disease activity can not be overemphasized. Because untreated or insufficiently treated disease activity is associated with joint destruction and worse health outcomes, it is unnecessary to use DMARD therapy. Because disease activity is suppressed with potentially toxic drugs it is critical to find the minimally efficacious dose as precisely as possible. Since there are only few drugs available and DMARD therapy may take up to 6 months before being effective, much is lost if an efficacious but overdosed DMARD causes intolerable side-effects and needs to be stopped. Control of disease activity in RA is a measurement-improvement process with the goal to reduce inflammatory activity and pain in the shortterm, and damage and consequently disability in the longterm (Stucki and Sangha, 1996). Within this dynamic framework disease activity and damage are intermediate clinical outcomes while pain and disability are primary patientoriented outcomes. Standardized, valid, reliable and sensitive measurement of disease activity (van der Heijde et al, 1992b; van Gestel et al, 1996) and patient outcomes (Fries et al, 1980; Stucki et al, 1995) using psychometrically sound questionnaires has made it possible to quantify the rather abstract concept of disease process in RA, to adjust treatment based on empirically derived guidelines (van Gestel et al, 1996) and to document and communicate decisions based on quantitative data (Stucki and Sangha, 1996). However, use of these measures is not trivial and meaningful interpretation requires familiarity with scores that can only be achieved by regular practice. In practice, efficient use of patient questionnaires and clinical indices such as the DAS may be best done within an organization similar to a laboratory organization requiring the necessary infrastructure. It is thus suggested that rheumatologists should select and optimize DMARD treatment using new standardized assessment methods for both, clinical status and patient outcomes. This requires that rheumatologists are actively and regularly involved in the care of patients with RA. In early RA the intervals often are 3 months while in well controlled disease the interval may be longer (Stucki and Sangha, 1996). It needs to be studied whether use of standardized measures and measurement-improvement concepts result in improved outcomes. Access to specialist management
Emphasizing the need for timely specialist referral and continuous involvement goes hand in hand with access to specialist management. However, access seems to be a problem in some environments. Long waiting times for the management of musculo-skeletal disorders have been singled out by general practitioners as a major deficiency (Hicks
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and Baker, 1991). Smith et al (1996) have demonstrated the need for. an acute rheumatology service in the UK. While RA was not among the reasons for emergency referrals (needing active treatment within 24 hours), RA was the most common diagnosis for urgent referrals (needing advice within 48 hours referral). Availability of acute rheumatology service may be an important 'safety valve' (Smith et al, 1996) and may help primary care physicians to respond to the pressure from patients for referral (Armstrong et al, 1991). Timely access to expert consultation may prevent inappropriate use of diagnostic procedures (e.g. unnecessary laboratory tests) and overtreatment (e.g. inappropriate use of steroids). In countries with a shortage of rheumatology specialist care, new innovative forms of specialist care have been considered. In Sweden, many rheumatologist units now send mobile teams on regular visits to primary care centres in a combined consultation-teaching role (Bjelle, 1996). We need to know more about the needs of the primary care physicians. What are the problems and how can we improve access to specialist management? It is also suggested to examine the reasons for delay in referral and to test whether restrictions in accessibility of specialist care is important.
Longitudinal, multidisciplinary care While there is a need for regular rheumatologist care, other health-care professionals have an important role in RA disease management. In early RA the patients need to be instructed by rehabilitation specialists on how to protect their joints, maintain a range of motion of their joints, conserve energy and strengthen their muscles. During the course of disease, managed or co-ordinated multidisciplinary care is efficacious in improving health status and quality of life, and to maintain function and productivity of patients with RA (Esdaile et al, 1995; Kwoh et al, 1996). For example, prescribed exercise programmes reduce pain and improve function for patients with rheumatoid arthritis (Semble et al, 1990). Also, patient education programmes and psychoeducational interventions improve function and quality of life, reduce physician visits by 40% and decrease health care costs (Lorig et al, 1993). Depending on the patient's problems, rheumatologic care utilizes the expertise of rheumatology, orthopaedics, podiatry, nursing, physical therapy, occupational therapy, social work, vocational counselling and clinical psychology. The perspectives and skills of different disciplines are essential for optimal outcomes.
Multidisciplinary care for patients with RA varies substantially across settings and along disease course. The hospital rehabilitation unit usually provides the most comprehensive and highly structured team. Instead, in many out-patient care units and in care managed by rheumatologists in private practice settings, specialists often function autonomously. Particularly in the latter settings the rheumatologist has an important role in the integration and co-ordination of efforts.
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Integration of providers in the patient care team has an influence on patient experience (Gerteis et al, 1993). Regardless of setting, there are frequent problems encountered in the provision of health care involving multiple providers. A major source of tension and fear among patients is their sense of the competence and efficiency of their care providers. Patients are concerned about who is in charge, whether responsibilities are clear and whether the providers work together smoothly and effectively sharing information and making joint decisions. They are concerned with whether providers communicate effectively, deliver consistent messages to both the patient and the family. In focus groups, Gerteis et al (1993) found that patients emphasized the need for providers to discuss questions related to their status and prognosis in a way that alleviated rather than exacerbated fear. Frequently, they are concerned about the impact of their illness on their ability to care for themselves and thus the burden it would impose on their family. While rheumatologists should be able to make best use of multidisciplinary care, the benefits of rheumatologists co-ordinating multidisciplinary care needs to be demonstrated.
Rheumatologist-patient relationship At the start of his or her disease the patient is often in the role of a passive recipient of health care, and relies upon the physician to resolve the problem (Holman, 1994). The primary focus is on diagnosis and initiation of DMARD treatment. With chronic illness, the patient becomes experienced and it is critical to engage the patient in an effective, consistent, and continuing partnership for managing the disease. Arthritis patients, their families and other informed consumers are more satisfied with care when it is co-ordinated by a physician knowledgeable in the illness (Tucker et al, 1994). A consistent provider-patient relationship based on trust and understanding is essential to a long-term dialogue as the physician guides the patient through the maze of medical choices and the vicissitudes of his/her life (Kwoh et al, 1996). Continuity of care also provides patients with security in the face of an uncertain future. Health-care providers and organizations have an ethical obligation to preserve doctor-patient relationships in chronic illnesses (Pellegrino, 1995; Quill and Cassel, 1995). A longitudinal treatment plan needs to be developed with the patient. The discussion should address disease prognosis and treatment options, taking into account the costs, adverse effects, expected time for response and monitoring requirements of pharmacological agents, in addition to the patient's preferences. Expectations for treatment and potential barriers to carrying out the recommendations should be discussed. A range of strategies designed to enhance physician-patient communication have been found to be effective in improving health outcomes (Stewart, 1995). Also, in ambulatory-care settings patient education and training in how to communicate more effectively with physicians may enhance outcomes (Greenfield et al, 1985; Kaplan et al, 1989).
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Practice points •
Information Take enough time Use patient language Be open to discuss any upcoming problems Provide educational materials Encourage patient education
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Continuity of care Engage patient in partnership Establish treatment plan and goals See patient at regular intervals Be available to resolve urgent problems Guide patient through treatment choices
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DMARD treatment Anticipate adverse effects and discuss potential barriers
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Assessment of disease consequences Involve patient using questionnaires on symptoms and disability
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Family Encourage family involvement
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Interaction between health-care providers Ensure consistent information Show appreciation for contribution of others
Essential to the patient's ability to contribute to health-care decisions is information. This requires that rheumatologists take time to provide information on clinical status and progress in language that patients can understand. Patients also need to be given information on their treatment and the relative costs and benefits of treatment alternatives. The extent and nature of such communication is an important dimension of patient experience. It has been demonstrated that patients can be effectively educated (Lindroth et al, 1995) and the success of such programmes can be properly monitored (Edworthy et al, 1995). Useful patient education materials are available from the Arthritis Foundations. Patients often want and expect family members to be involved in decisions. Relatives and/or friends of patients are frequently involved in assisting with care and can have a substantial impact on patient experience and ultimately their quality of life. They may watch over patients, remind patients about treatments and medications and assist with personal care in the home (Ellers and Walker, 1993). Some health-care settings encourage involvement of family and friends, while others create barriers making it more difficult for them to assist and participate. This will greatly influence a patient's experience.
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Summary In increasingly cost-conscious, accountable and integrated health-care systems, the appropriate role of speciality care is under scrutiny. The data on the impact of rheumatologist care on outcomes in patient with RA are limited and inconclusive. Based on a review of processes of care known to be related to superior patient outcomes it is suggested that rheumatologists should be the lead physicians in patients with RA. Rheumatologists can make best use of and co-ordinate multidisciplinary care. However, the benefits of rheumatologists co-ordinating multidisciplinary care needs to be demonstrated. A major problem in the management of early RA is delay of diagnosis and initiation of appropriate treatment although we need more data about the importance of the problem. Currently, the goal of initiating treatment early may be unrealistic for many patients. Teaching the importance of timely referral is an important goal in the training of students and generalists. Guidelines developed in collaboration with rheumatologists and primary care physicians (Kwoh et al, 1996) are promising in this respect. It is suggested that the reasons for delay in referral and the restrictions in accessibility to specialist care should be examined. Rheumatologists but not generalists have the experience necessary to initiate appropriate DMARD treatment and to optimize treatment using new standardized methods for both clinical and patient-oriented assessment. Rheumatologists should thus actively and regularly be involved in the management along the disease course. It needs to be studied whether use of standardized measures and measurement-improvement concepts result in improved outcomes.
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