Successfully living with chronic arthritis

Clin Rheumatol (2006) 25:189-197 DOI 10.1007/s10067-005-1155-0

Erik T a a l • E l zb i e ta B o b i e t i n s k a • J i l l L l o y d Mart ine V e e h o f • W i e t s k e J M Rasker F. G. J. (Frits) Oos terve ld • J. J. (Hans ) Rasker

Successfully living with chronic arthritis

The role of the allied health professionals

Received: 4 August 2005/ Revised: 20 April 2005/Accepted: 20 April 2005/Published online: 12 July 2005 © Clinical Rheumatology 2005

Abstract The t reatment and care of patients with rheumatoid arthrit is (RA) is complex and various health professionals with different areas o f expertise may be involved. The objective o f this article is to review the treatments and their efficacy as provided by health care professionals in RA care. The requirements for further research in this area are formulated. To achieve better effects of t rea tment it is necessary to improve the coordination o f services as provided by the different specialists. The impor tan t roles o f the patients themselves in the care and management of the disease are emphasized, as well as the roles of the informal caregivers such as a spouse or o ther family members and friends and the role of patient societies. The possible role o f the Interna- tional Classification o f Functioning, Disability and Heal th ( ICF) to improve the communica t ion and facilitate the coord ina t ion among health professionals and between patients and health professionals is mentioned. The topics presented in this article may encourage further discussion and research, particularly concerning the effects o f the t reatments as provided by allied health

E. Taal - M. Veehof- J. J. Rasker (Sz~) Department of Communication Studies, Faculty of Behavioural Sciences, University Twente, P.O. Box 217, 7500 AE, Enschede, The Netherlands E-mail: j.j.rasker @utwente.nl Tel.: + 31-53-4892398 Fax: + 31-53-4894259

E. Bobietinska "Partnership for Health" TOPOS Information Centre, U1. Schroegera 82/3, 01-828 Warsaw, Poland

J. Lloyd Department of Health and Social Care, Brunel University, Borough Road, Isleworth, TW7 5DU United Kingdom

W. J. Rasker Mesos, locatie Overvecht, Parana Dreef 2, 3563 AZ, Utrecht, The Netherlands

F. G. J. Oosterveld Saxion University for Professional Education, PO Box 70.000, 7500 KB, Enschede, The Netherlands

professionals. Heal th professionals play an impor tan t role in the life o f patients with rheumatic disorders, in all the domains o f the ICF: body functions and structure, activities (action by an individual) and part ic ipat ion ( involvement in a life situation). Heal th professionals in rheumato logy can make the difference in the lives o f RA patients and their families.

K e y w o r d s Arthr i t i s • Heal th professionals Multidisciplinary care • Review

Introduction

Some rheumat ic disorders can be successfully managed or even healed, and in others such as rheumato id arthritis (RA) progress has been made in medical and surgical treatments. The course o f RA is difficult to predict; with new medical and surgical t reatments the quality o f life o f many patients has been improved, but still in mos t people the disease leads to loss o f function, dependence upon others and pain [1-3]. Morta l i ty is increased and many RA patients have other chronic disorders and cardiovascular diseases as well [4~6]. New treatments in the area o f biologics and combina t ion therapies may result in better prognosis [7, 8]. The t rea tment o f such a condi t ion is complex and various health care professionals with different areas o f expertise may be involved in the treatment. Apar t f rom the rheumatologis t and the general practi t ioner, the or tho- paedic surgeon and other medical specialists, nurses, physical therapists, occupat ional therapists, psychologists, podiatr ists and social workers are f requent ly en- gaged in the treatment. In some cases, these health professionals (HPs) are working together formally in a multidisciplinary team. One may speak o f multidisci- pl inary team care ( M D T C ) when c o m m o n t rea tment goals are agreed upon; plans are made and possibly adapted in the course of time with s t ructured team

190

conferences. MDTC can be provided during a stay in hospital, in the community or in an outpatient day care setting [9]. The rehabilitation cycle concept: assessment, assignment, intervention management, goal setting and evaluation and the use of the International Classification of Functioning, Disability and Health (ICF) to enhance patient management will play a role [10]. The objective of this article is to review the treatments and their efficacy as provided by health care professionals in RA care.

The aims of treatment

The aim of the treatment of rheumatic patients is to improve the quality of life of the patient and his or her family and other caregivers as well as to maintain or improve functioning. Long-standing arthritis may lead to irreversible joint damage and quality of life may be seriously affected. Due to this, many RA patients will not be able to work and economic consequences both on individual level and for society are substantial [11].

The ICF as published by the World Health Organi- zation (WHO) can be applied in an attempt to quantify the function both at the onset of therapy and as a measure of success of any intervention [12-14]. The ICF provides a description of situations with regard to hu- man functioning and disability but has not yet proven to be useful as an evaluation tool [15]. It serves as a framework to organize information according to three dimensions: body functions and structure, activities (action by an individual) and participation (involvement in a life situation). The extent of restrictions of participation depends on the individual's health condition as well as personal and external factors representing the circumstances in which the individual lives [13]. Tradi- tionally, doctors and other HPs decided what should be the important aims and outcomes of treatment. How- ever, it is increasingly recognized that patients themselves should be involved in defining aims and desired outcomes of treatment. An example of this is the very successful "Patient Perspective Workshop" at the 2002 OMERACT 6: International Consensus Conference on Outcome Measures in Rheumatology, with the active participation of 11 patients from all over the world [16, 17]. The current paradigm of medical treatment of rheumatic diseases such as RA is to suppress disease activity with the ultimate goal of preventing loss of functioning. The rehabilitation perspective has the goal of restoring or maintaining functioning in people with RA. The surgical perspective tries to restore body structures and thus body functions.

Treatment by health professionals

Generally outpatients with RA are referred by the rheumatologist, the general practitioner or the nurse practitioner to one or more HPs working in the field of rheumatology.

Clinical nurse specialist

Clinical nurse specialists have been introduced into many teams to assist in complex disease management. They are involved in the medical treatment with the perspective to reduce disease activity as well as in the rehabilitation perspective to maintain and improve functioning [18, 19]. They give assistance to RA patients in a broad sense and help them to cope with the disease and its consequences [20]. They manage the patients' drug therapy and advise and educate concerning drug management. Apart from actually delivering clinical care, education and assistance, clinical nurse specialists can enhance and support care delivered by other HPs.

It has been shown that the addition of the care of a clinical nurse specialist is as effective as regular outpatient care by the rheumatologist alone [18]. The cost of clinical nurse specialist care is lower compared with MDTC and their intervention results in equivalent quality of life and utility [18, 21]. Control of disease activity by medical treatment may have played a crucial role in the improvement of physical functioning and disability [19]. Further studies are needed to clarify the specific advantages of MDTC in general and of the clinical nurse specialist. These should be performed in patients with stable disease activity and no medical interventions at the same time [19].

Physiotherapist

Many forms of physiotherapy have been the mainstay of management of rheumatic patients all over the world. The main role of physiotherapists is in the domain of rehabilitation to restore and maintain or improve functioning. They may play an important role after surgery. Although very popular amongst physiotherapists over the last decades, recently, little or no evidence was found for the effect of electrotherapy and diathermy in a wide range of musculoskeletal disorders [22]. However, further studies were recommended regarding laser therapy in the treatment of RA and electrotherapy for osteoar- thritis. The use of ultrasound is controversial although in a recent study it has been shown to be useful in decreasing swelling and improving grip strength in the hand [23]. In patients with symptomatic calcifying ten- dinitis, ultrasound helps to resolve calcifications and is associated with short-term clinical improvement [24]. Heat and cold are common treatments for arthritic patients, but scientific proof for their influencing disease activity is still very weak. A Cochrane review revealed just seven studies and showed no effect of heat or cold treatment on objective measures of disease activity [25]. However, the clinical benefits regarding pain, stiffness and joint function are well recognized. Therefore the authors recommend thermo therapy, especially before exercise, for those patients who enjoy their treatment, since it has no harmful effects, if contraindications are taken into account [26].

191

Hydrotherapy is popular with patients but there is little scientific evidence to support it as a key management strategy. Certainly as a medium in which to exercise, it can be argued that the painful joint is supported by buoyancy and the person with arthritis feels more confident to move. In addition other properties of water can be used to assist and resist motion. Once taught the basics of movement in water by the professional, persons with arthritis can successfully use their local swimming pool.

Latterly it has become clear that it is important to preserve and improve the physical condition by exercise therapy. In RA it has been shown that short-term high- intensity exercises and dynamic exercises result in an improvement of muscle strength and physical fitness without increasing disease activity [27-30]. The bone loss is slowed down by high-intensity exercises [31]. The present body of knowledge prescribes a high intensity and frequency of aerobic as well as strengthening exercises [32]. The question is not if, but how high intensity exercise will achieve these effects. Therefore more fun- damental research is recommended. The small joints in the hand are not affected by long-term high-intensity exercise therapy, those in the feet even benefit [33], but effects on large joints with considerable baseline damage are negative [34].

Setting up a system of networks in connection with continuing education for physiotherapists, regarding treatment of patients with rheumatic diseases, is feasible and effective [35].

Occupational therapist

The occupational therapist plays an important role in the lives of many rheumatic patients, facilitating them to cope with activities of daily living and with limitations in participation in society. The occupational therapist thus plays a role in the domain of rehabilitation to restore and maintain function.

Joint protection forms a common component in the treatment programme; its aim is to prevent impairments of body function (ICF). It includes a number of strategies to reduce pain, inflammation, internal and external joint loading and risk of deformities. Therefore, functioning should be easier and functional status should be maintained for longer. Much of the joint protection education by occupational therapists focuses on teach- ing the use of alternative movement patterns to perform activities (i.e. using affected joints in their most stable and functional position, or distributing the load of objects over as many joints as possible) and on energy conservation. Furthermore, occupational therapists give advice for assistive devices (i.e. special cutlery, dressing devices) and adaptations at home (i.e. grab bars, shower seat) or in the car, teach patients to use the assistive devices and take care of the provision of splints [36-38]. A recent development is the use of silver ring splints that can be of help for people with finger problems [39].

Finally, occupational therapists play an important role in the postoperative care, for example after hand surgery.

A systematic review found limited evidence for the effectiveness of occupational therapy (OT) interventions [40]. Comprehensive OT and instructions regarding joint protection showed only limited evidence for the effectiveness on functional ability and further studies are needed. Splint interventions showed indicative findings for the effectiveness in reducing pain [40]. However, controlled trials and studies with a high methodological quality are scarce, especially with regard to "training of skills" and "advice in the use of assistive devices". Further research is needed to examine the effectiveness of OT interventions. Special attention should be given to the design of trials and the use of responsive, reliable and valid outcome measures for arthritic patients [40].

The rheumatic foot: podiatrist and orthopaedic shoemaker

Many people all over the world have foot problems, especially the elderly. Six of ten people with foot complaints sought medical care or help from allied HPs [41]. Problems include hammer toes, sores, callosities and so on. Orthopaedic shoemakers, podiatrists and many other HPs can play an important role to relieve these problems by taking away the cause of the pain or, if that is impossible, to relieve the symptoms. They thus play an important role in the domain of rehabilitation in improving or maintaining function and trying to prevent impairment. Early foot orthoses have been shown to be beneficial in RA patients regarding pain and foot disability [42]. For many patients adapted (semi)orthopaedic shoes, including bandages, can be a solution for their foot problems. The podiatrist, in several subspeci- alities, differing in each country, may use inlays/silicone orthotic devices, to relieve pressure points. A systematic review concluded that there is some preliminary evidence to support the use of extra-depth shoes, with or without semi-rigid insoles, to relieve pain on walking and weight bearing. Supported insoles appear to limit progression of the hallux valgus angle but do not decrease pain or enhance function [43]. More studies of good methodological quality are needed in this field.

Social worker

Social workers play a role in preventing, soothing or solving personal problems and problems regarding networks of interpersonal relations in the family and out- side the family, problems regarding work or profession and other resources indispensable for independent living [4446]. They thus play a role in the rehabilitation domain in restoring and maintaining function especially from the social perspective. Social workers cooperate with hospitals, local authorities, nursing homes and

192

insurance companies but also with nurses and GPs. In the Netherlands 7-11% of the RA patients who were taken into hospital were seen by the social worker [47]. As there are no restrictions for involving a social worker, this percentage of 7-11% may mirror the need of those RA patients who are taken into hospital.

Psychologist

There is increasing recognition that psychological pro- cesses play an important role in the experience of health and illness [48]. Psychologists can assist the patient and family in coping with the chronic pain and emotional distress from the disease, to enhance their independence and quality of life. They thus play a role in the rehabilitation domain in restoring and maintaining function especially from the psychosocial perspective. Psycholo- gists provide a wide range of interventions designed to enhance coping, including cognitive behavioural therapy, pain and stress management, sexual and relation- ship counselling and psychotherapy [49, 50].

Patient education

Patient education is provided to patients during regular contacts with doctors and other HPs. It plays a role in the domain of medical treatment, for example treatment adherence, but also in the rehabilitation domain to restore and maintain functioning. Many means of patient education have been developed such as educational materials (e.g. leaflets) or structured educational programmes (e.g. individual or group programmes). It is obvious that every patient should be informed by their doctors and HPs, so they can make informed decisions and give informed consent. Structured educational programmes can be defined as planned educational activities designed to teach patients knowledge, beliefs and behaviours (such as adherence to health recommendations, self-management and coping strategies) which impact on health status and quality of life [51]. One of the aims of patient education must be to facilitate self-management and empowerment of the person with arthritis.

Various types of patient education programmes can be distinguished such as the provision of information, counselling, social support and cognitive behavioural treatment. Educators in these programmes are often nurses, social workers, other HPs (such as physiotherapists or occupational therapists) and sometimes peer educators. Psychologists are often involved, especially in programmes that apply cognitive behavioural strategies. A systematic review has shown that patient education has clear but small beneficial effects on health status, which are short lived [52, 53]. Further studies are needed to evaluate which specific educational interventions (such as self-efficacy approaches, family involvement) at what stage in the disease are the most effective. Also we

should seek to identify which outcomes are most rele- vant for patient education, and how we can improve the benefits of patient education by tailoring programmes to the needs and characteristics of patients. A study by Evers et al. [54] showed promising results of tailored cognitive-behavioural therapy in early RA patients with a psychosocial risk profile. The rise of computers and the Internet provide opportunities to develop interactive interventions tailored to the individual situation of the patient.

Vocational rehabilitation

Permanent work disability is a frequent adverse outcome of many rheumatic diseases, with a large impact on the individual as well as on society. In patients with RA, about 50-60% of the patients are permanently work disabled within 10 years of disease onset [55]. Because return to work is difficult if a patient has already lost his or her job, early vocational rehabilitation is advocated to prevent permanent work disability. It thus plays a role in the rehabilitation domain in restoring and maintaining function especially from the social perspective. With the help of so-called functional capacity evaluation instruments alternative or adapted work possibilities can be suggested in a reliable and valid way [56, 57]. The use of such equipment in the future evaluation of the RA patient's work abilities should be encouraged.

Help by partners, family and friends

In the past it was obvious that family and neighbours took care of someone who became ill and dependent upon others. Despite changes in society this is still often the case.

Informal caregivers (partners, family members or neighbours) helped RA patients, for a mean of 33 h every week, with activities of daily living and household activities [58], while HPs spend in general only a fraction of this time with these patients. The main caregivers are thus not the HPs but the patients themselves and their informal caregivers. This means that in a multidisciplinary team programme, patients and their informal caregivers should be involved.

Multidisciplinary team care

A multidisciplinary team of HPs who communicate with each other on a regular basis has long been considered to be the best management strategy for complex care [59]. For decades, this MDTC was mainly supplied in inpatient settings. It has been shown that during such hospitaliza- tions, patients showed a continuing and linear improvement over time [60, 61]. The main explanation for this improvement may be the optimal medical treatment [19].

193

Moreover, inpatient M D T C appeared to be more effective than regular outpatient care [9, 62, 63]. Comparisons of inpatient and day patient M D T C indicate that with day patient care equal clinical effects can be achieved as with inpatient care, at lower costs [18]. There is a move towards more outpatient and community management in Europe. We can expect a better result of MDTC when the patients and the informal caregivers will fully be recognized as participants of the team.

Coordination of care in the extramural setting?

Coordination of care in the normal setting may be improved, by providing a passport to the patient. The intention of such a passport is that the various health care providers register all their activities and conclusions with regard to the patient in this passport--including medications, therapies, laboratory results and opera- tions. This possibility was studied and although communication between HPs improved (mainly home help nurse, physiotherapist and specialist), the health or mood of patients were not influenced [64].

Can nurse practitioners improve the coordination? Although we assume such an effect, it has still to be proven [20]. Other possibilities to improve the coordination and cooperation between HPs and between HPs and informal caregivers need to be considered.

Complementary medicine

Many rheumatic patients use complementary alternative medicine [2, 65, 66]. Every year 10-30% of RA patients will consult an alternative healer. It is important for the patients that they mention these visits to the allied HPs and have an opportunity to discuss the matter. It is also important that HPs have knowledge about complementary and alternative treatments, and its possibilities and restrictions, to be able to give advice to their patients [67]. One should keep an open eye for new developments, for example spa treatments may be useful for patients with ankylosing spondylitis and fibromyalgia syndrome [68, 69].

PaUent societies

Patient societies may play an important role in the lives of the rheumatic patient. In the Netherlands about 110 different patient societies are represented in the national rheumatic patient association; these include local societies but also national associations of ankylosing spondylitis, systemic lupus erythematosus, juvenile idiopathic arthritis, etc. Other national societies exist for people with fibromyalgia syndrome and Sj6gren's syndrome.

National societies in many countries edit journals; they offer different educational, health promotion and rehabilitation programmes (for example they organize

swimming in heated public pools, exercises, advisory services, self-management courses) and support the development of self-help groups. They cooperate with HPs and sometimes employ them in their own health care facilities [70, 71].

Patients are realizing that they have a unique role in promoting the provision of adequate care and treatment. This for example is summarized in a document: the People with Arthritis/Rheumatism in Europe, Manifesto for the third millennium, an initiative of Arthritis and Rheumatism International (ARI), International Orga- nization of Youth with Rheumatism (IOYR) and the Standing Committee of the European League Against Rheumatism (EULAR) Social Leagues [72]. Patients can play an important role in giving instructions to doctors and students regarding the musculoskeletal examination [73]. Contact with disabled people, particularly disabled people who are not your patients, will lead to more positive attitudes [74].

Patients are now involved in defining research prior- ities and in planning actual research in cooperation with HPs and health researchers as is exemplified by the participation of patients in "Patient Perspective Work- shops" at the OME R AC T conferences [16, 17].

EULAR health professionals

The Standing Committee of HPs within E U L A R was formed 10 years ago. It enables and empowers Euro- pean HPs to perform their unique role in providing the best possible care to people with arthritis and rheumatism in Europe. It has one representative from many participating countries. There are opportunities for countries not represented to join. The committee orga- nizes the allied HP programme for the E U L A R Annual Conference each year, endeavouring to achieve a broad spread of speakers from different nations and professions. In addition, specific education programmes can be requested where required. These are delivered by a team of experienced HPs with expertise in that area.

E U L A R allied HPs undertook strategic planning in 2002 with the aid of the secretariat and are now embarking on a mission to improve evidence in health care. Research activities involving HPs from many countries are planned with anticipated funding from EULAR. It is hoped that this will facilitate high quality evidence-based health care for people with arthritis in Europe [75]. The activities of the ILAR HPs Standing Committee have been summarized recently [77].

D ~ u s s i ~

The aim of multidisciplinary care is to improve the quality of life of the patient and his or her family (and caregivers). The serious impact of RA on the quality of life motivates such an aim.

194

HPs play an important role from the rehabilitation perspective in restoring and maintaining functioning, but also in making optimal medical treatment possible and thus reducing disease activity. This last effect may be the most important part [10, 19, 27, 76].

We gave some examples of the current practice and possibilities of treatment offered by HPs for people with rheumatic disorders. Some existing evidence of the efficacy of these treatments was reviewed and requirements for further research in this area were formulated.

Setting up an approach as described in this article may result in great difficulties in many countries in the world and will be impossible in many health care sys- tems [77].

We introduced a concept of measurement of the effectiveness of "any intervention in the treatment of RA". According to this concept, effectiveness of such interventions could be measured by indicators of health and functioning and its limitations and not only by indicators of the disease activity. The publication of the ICF provided new incentives for the development of this type of measurement [13]. Such a development will open new possibilities of more precise description of the old observation that people with rheumatic diseases who are in similar clinical conditions can function in different ways and achieve different levels of quality of life and participation in society [78].

We emphasized that to achieve better effects of treatment it is necessary to improve coordination of services provided by different specialists. Three different models of coordination of care and cooperation among specialists in this area were discussed. Hypothetically the most advanced is the cooperation and coordination in formally established multidisciplinary teams, whose members meet "face to face" regularly. The second type of cooperation and coordination has the form of networks of service providers, who are involved in treatment of patients with RA. Such networks are developed, when service providers communicate with each other regularly, asking for consultation, exchanging information, looking for solutions in cases of difficult diagnostic or therapeutic problems or looking for complementary services for their patients [75]. The networks can be developed spontaneously (for example among participants of a common vocational training, etc.) or in the course of special projects. The "face-to-face" contacts in the framework of the networks can be relatively rare. Media play an important role, and especially the Inter- net, as well as scientific literature and professional societies, regarding continuing education. The third type of cooperation and coordination is focused on improvements of communication among specialists, introduced in the framework of the so-called managed care, while patients are equipped with special passports and specialists become obliged to write down the information about the services provided. As was emphasized, such an innovation did not improve the effectiveness of services in terms of the impact "on health or mood" of the patients.

After examining and evaluating the prevalent models of the multidisciplinary care we discussed the alternative models with a fully acknowledged position of the patient and informal caregivers (family members, friends, etc.), treated as team participants, that is--as partners by professional health care workers. It is increasingly recognized that patients should be involved in formulating aims and desired outcomes (or formulating aims and evaluating outcomes) of treatment. The OMERACT 7 conference in 2004 has again included a "Patient Per- spective Workshop" with the involvement of patients from all over the world.

According to the so-called Madrid Declaration [79], adopted by participants of the European Congress of People with Disabilities (Madrid, 20-23 March 2002), partnership between disabled persons and other parts of society can be developed, if the disabled are perceived as respected, equal citizens and "not as objects of charity or patients". Such an intention is expressed in this article, related to persons "successfully living with chronic arthritis".

While involving the person in the management of his or her chronic condition, it is necessary to avoid the danger of making his or her life excessively subordinated to the questions of treatment [71, 80, 81]. The role of the patient as well as the roles of HPs 1 depend to a large degree on reflection, experience and imagination of persons, playing such roles, as well as on the dialogue between them [82-84].

This line of development seems to be realized by EULAR and ILAR HPs as well as by EULAR and ILAR Social Leagues and associations of people with rheumatic diseases.

Works concerning the ICF are another interesting example of a dialogue and cooperation among HPs (in a broader sense, including physicians) as welt as among HPs and disabled people organizations [10, 76]. The use of the ICF to enhance patient management, for example in the concept of the rehabilitation cycle, which is a problem-solving approach, including assessment, assignment, intervention management, goal setting and evaluation, has been illustrated [15].

The ICF (which substituted International Classifica- tion of Disabilities, Impairments and Handicaps--IC- DIH) could provide a common language or rather a common vocabulary concerning functioning and health. Thus, it could improve the communication and facilitate the cooperation on a partnership basis among HPs and between patients and HPs [10]. The ways to develop partnership in care as well as to achieve the improvement of its coordination, quality and effectiveness seem to be convergent sometimes.

A formal consensus based on the 1CF framework and classification led to the definition of the ICF core sets

~The concept of "health professions" was introduced to the World Health Organisation Constitution (accepted by the Member States of the United Nations on 7 April 1948 [72]

195

and c o m p r e h e n s i v e core set for RA. The re l iabi l i ty a n d val idi ty o f these core sets need to be conf i rmed [15].

There is a need for fu r the r research in to the effects o f t r ea tments p r o v i d e d by the allied HPs in the f r a m e w o r k of m u l t i d i s c i p l i n a r y care. In such research s t rong coop- e ra t ion be tween scientists , heal th care p rov iders a n d pa t ients is i nd i spensab l e . The re is a long t r ad i t i on of the i n v o l v e m e n t in hea l th care research of rheuma to log i s t s and o ther phys i c i ans in their roles of care providers [85]. At present m a n y of the specialities still descr ibed as "hea l th p r o f e s s i o n a l s " are t augh t at i n s t i t u t i ons of h igher e d u c a t i o n , some at universi t ies . F o r h igh qua l i ty research b r o a d e r c o o p e r a t i o n of the allied HPs is needed, if poss ib le toge the r wi th research g roups in the universi t ies .

Conclusion

HPs play a n i m p o r t a n t role in the life o f pa t i en t s wi th rheuma t i c d i sorders , in all the d o m a i n s of the I C F : b o d y func t ions a n d s t ruc tu re , act ivi t ies (ac t ion by an individual) a n d p a r t i c i p a t i o n ( i nvo lvemen t in a life s i tua- t ion). H P s in r h e u m a t o l o g y can m a k e the difference in the lives o f R A pa t i en t s a n d their families [86].

References

1. Rasker JJ, Cosh JA (1989) Course and prognosis of early rheumatoid arthritis. Scand J Rheumatol Suppl 79:45-56

2. Cornelissen PGJ, Rasker JJ, Valkenburg HA (1988) The arthritis sufferer and the community. A comparison of arthritis sufferers in rural and urban areas. Ann Rheum Dis 47:150-156

3. Taal E, Rasker JJ, Seydel ER, Wiegman O (1993) Health status, adherence with health recommendations, self-efficacy and social support in patients with rheumatoid arthritis. Patient Educ Couns 20:63-76

4. Berkanovic E, Horwicz ML (1990) Rheumatoid arthritis and comorbidity. J Rheumatol 17:888-892

5. Minaur N J, Jacoby RK, Cosh JA, Taylor G, Rasker JJ (2004) Outcome after 40 years with rheumatoid arthritis: a prospective study of function, disease activity and mortality. J Rheumatol 31 [Suppl 69]:3-8

6. Gabriel SE, Crowson CS, O'Fallon WM (1999) Mortality in rheumatoid arthritis: have we made an impact in four decades? J Rheumatol 26:2529 2533

7. Darmawan J, Rasker JJ~ Nuralim H (2004) Ten-year radio- graphic outcome in patients with rheumatoid factor positive rheumatoid arthritis treated with aggressive immunosuppres- sive combination therapy. J Rheumatol 31 [Suppl 69]:66-69

8. Choi HK, Hernfin MA, Seeger JD, Robins JM, Wolfe F (2002) Methotrexate and mortality in patients with rheumatoid arthritis: a prospective study. Lancet 359:1173-1177

9. Vliet Vlieland TPM, Hazes JMW (1997) Efficacy of multidisciplinary team care programs in rheumatoid arthritis. Semin Arthritis Rheum 27:110-122

10. Stucki G, Ewert T, Cieza A (2002) Value and application of the ICE in rehabilitation medicine. Disabil Rehabil 24:932-938

11. Wolfe F, Hawley DJ (1998) The long-term outcomes of rheumatoid arthritis: work disability: a prospective 18 year study of 823 patients. J Rheumatol 25:2108-2117

12. World Health Organisation (2001) International classification of functioning, disabilities and health (ICE). WHO, Geneva

13. Grimby G, Smedby B (2001) ICF approved as the successor of IDIDH. J Rehabil Med 33:193-194

14. Stucki G, Cieza A (2004) The international classification of functioning, disability and health (ICF) core sets for rheumatoid arthritis: a way to specify functioning(report). Ann Rheum Dis 63 [Suppl]:45

15. Stucki G, Cieza A, Geyh S, Battistella L, Lloyd J, Symmons D, Kostanjsek N, Schouten J (2004) ICF core sets for rheumatoid arthritis. J Rehabil Med 44 [Suppl]:87-93

16. Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmen M, Boers M, Minnock P, Saag K, Shea B, Suarez Almazor M, Taal E (2003) Outcomes from the Patient Perspective Work- shop at OMERACT 6. J Rheumatol 30:868-872

17. Quest E, Aanerud G J, Kaarud S, Collins S, Leong A, Smedeby B, Denny-Waters A, Mellors R, Taylor D, de Wit M (2003) Patients' perspective. J Rheumatol 30:884~885

18. Tijhuis G J, Zwinderman AH, Hazes JMW, van den Hout WB, Breedveld FC, Vliet Vlieland TPM (2002) A randomised comparison of care provided by a clinical nurse specialist, inpatient team care and day patient team care in rheumatoid arthritis. Arthritis Care Res 47:525-531

19. Stucki G (2003) Understanding disability (leader). Ann Rheum Dis 62:289-290

20. Temmink D, Hutten JBF, Francke AL, Rasker J J, Abu-Saad HH (2001) Rheumatology outpatient nurse clinics, a valuable addition? Arthritis Care Res 13:280-286

21. van den Hour WB, Tijhuis GJ, Hazes JMW, Breedveld FC, Vliet Vlieland TPM (2003) Cost effectiveness and cost utility analysis of multidisciplinary care in patients with RA: a randomised comparison of clinical nurse specialist care, inpatient team care, and day patient team care. Ann Rheum Dis 62:308-315

22. Health Council of the Netherlands (1999) Effectiveness of physical therapy: electrotherapy, laser therapy and ultrasound therapy. Health Council of the Netherlands, The Hague (publications no. 1999/20)

23. Casimiro L, Brosseau L, Robinson V, Milne S, Judd M, Well G, Tugwell P, Shea B (2002) Therapeutic ultrasound for the treatment of rheumatoid arthritis (Cochrane Review). Coch- rane Database Syst Rev 3:CD003787

24. Ebenbichler GR,, Erdogmus CB, Resch KL, Funovics MA, Kainberger F, Barisani G, Aringer M, Nicolakis P, Wiesinger GF, Baghestanian M, Preisinger E, Fialka-Moser V (1999) Ultrasound therapy for calcific tendonitis of the shoulder. N Engl J Med 340:1533-1538

25. Robinson V, Brosseau L, Casimiro L, Judd M, Shea B, Wells G, Tugwell P (2002) Thermotherapy for treating rheumatoid arthritis (Cochrane Review). Cochrane Database Syst Rev 2:CD002826

26. Oosterveld FGJ, Rasker JJ (1994) Treating arthritis with locally applied heat or cold. Semin Arthritis Rheum 24:8~90

27. Stucki G, Kroeling P (2000) Physical therapy and rehabilitation in the management of rheumatic disorders. Baillieres Best Pract Res Clin Rheumatol 14:751-771

28. de Jong Z, Munneke M, Zwinderman AH, Kroon HM, Jansen A, Ronday KH, van Schaardenburg D, Dijkmans BAC, van den Ende CHM, Breedveld Fc, Vliet Vlieland TPM, Hazes JMW (2003) Is a long-term high-intensity exercise program effective and safe in patients with rheumatoid arthritis? Arthritis Rheum 49:2415-2424

29. Van den Ende CH, Vliet Vlieland TP, Munneke M, Hazes JM (1998) Dynamic exercise therapy in rheumatoid arthritis: a systematic review. Br J Rheumatol 37:677-687

30. Van den Ende CH, Vliet Vlieland TP, Munneke M, Hazes JM (2000) Dynamic exercise therapy for rheumatoid arthritis. Cochrane Database Syst Rev 2:CD000322

31. de Jong Z, Munneke M, Lems WE, Zwinderman AH, Kroon HM, Jansen A, Ronday KH, Dijkmans BAC, van den Ende CHM, Breedveld Fc, Vliet Vlieland TPM, Hazes JMW (2004) Slowing of bone loss in patients with rheumatoid arthritis by long-term high-intensity exercise: results of a randomized, controlled trial. Arthritis Rheum 50:1066-1076

196

32. Stenstr6m CH, Minor MA (2003) Evidence for the benefit of aerobic and strengthening exercise in rheumatoid arthritis. Arthritis Care Res 49:428-434

33. de Jong Z, Munneke M, Zwinderman AH, Ronday KH, Dijkmans BAC, Kroon HM, Breedveld FC, Vliet Vlieland TPM, Hazes JMW, Huizenga TWJ (2004) Long term high- intensity exercise and damage of small joints in rheumatoid arthritis. Ann Rheum Dis 63:1399-1405

34. Munneke M, de Jong Z, Zwinderman AH, Ronday KH, van Schaardenburg D, Dijkmans BAC, Kroon HM, Vliet Vlieland TPM, Hazes JMW (2005) Effect of a high-intensity weight- bearing exercise program on radiologic damage progression of the large joints in subgroups of patients with rheumatoid arthritis. Arthritis Rheum 53:410-417

35. Verhoef J, Hoekman R, Munneke M, Bakker M, Otten W, Rasker J J, Oosterveld FGJ, Vliet Vlieland TPM FYRANET: implementation and evaluation of a system of networks and continuing education for physical therapists in rheumatology. Int J Med Informatics (in press)

36. Nordenskjold U (1997) Daily activities in women with rheumatoid arthritis: aspects of patient education, assistive devices and methods for disability and impairment assessment. Scand J Rehabil Med 37 [Suppl]:1-72

37. Hammond A, Freeman K (2001) One-year outcomes of a randomized controlled trial of an educational behavioural joint protection program for people with rheumatoid arthritis. Rheumatology 40:1044-1051

38. Melvin JL (1989) Rheumatic diseasein the adult and child: occupational therapy and rehabilitation, 3rd edn. Davis, Philadelphia

39. Zijlstra TR, Heijnsdijk-Rouwenhorst L, Rasker JJ (2004) The effect of silver ring splints on hand function in patients with rheumatoid arthritis. Arthritis Rheum 51:947 951

40. Steultjens EMJ, Dekker J, Bouter LM, van Schaardenburg D, van Kuyk MAH, van den Ende CHM (2002) Occupational therapy for rheumatoid arthritis: a systematic review. Arthritis Rheum 47:672 685

41. Gorter K, Kuyvenhoven M, de Melker R (2001) Health care utilisation by older people with non-traumatic foot complaints. What makes the difference? Scand J Prim Health Care 19:191-193

42. Woodburn J, Stableford Z, Helliwell PS (2000) Preliminary investigation of debridement of plantar callosities in rheumatoid arthritis. Rheumatology 39:652-654

43. Egan M, Brosseau L, Farmer M, Ouimet MA, Rees S, Wells G, Tugwell P (2003) Splints/Orthoses in the treatment of rheumatoid arthritis (Cochrane Review). Cochrane Database Syst Rev I:CD004018

44. Peeters W (1992) Effect of rheumatoid arthritis upon other members of the family. Clin Rheumatol 11:185-188

45. Peeters W, Praca Z, Zeszyty W, Profesjonalist6w Z (2001) Teamwork. Proceedings of the Health Professionals Work- shops. O~rodek Informacji TOPOS, Warsaw, pp 7-16

46. Bobiatynska E (1999) Koordynacja usug z zakresu ochrony zdrowia i pomocy spoecznej: przykady rozwigzafi i modele pi- lota~owe (Co-ordination of medical and social services: exem- plary solutions and pilot studies). Zdrowie Publiczne Tom CIX, Suppl 5, Warszawa str. 17-27. (Public Health, published by the Ministry of Health, Warsaw 1999; T.CIX, Suppl 5:17-27)

47. Stuurgroep Toekomstscenario's Gezondheidszorg (1991) Chronische Ziekten in het jaar 2005, deel 3: Scenario's over reumatoide arthritis (in Dutch). Bohn Stafleu van Loghum, Houten (ISBN 9031312843)

48. Marks DF, Sykes CM, McKinley JM (2002) Health psychology: overview and professional issues. In: Nezu AM, Nezu CM, Geller PA, Weiner IB (eds) Handbook of psychology, vol 9: Health psychology. Wiley, New York, pp 5-23

49. Zant J (2002) De psychologische behandeling van reuma en pijnklachten in een revalidatie-instelling (Psychological treatment of arthritis and pain in a rehabilitation centre). In: Vingerhoets AJJM, Kop PFM, Soon PHGM (eds) Psychologic in de gezondheidszorg. Een praktijkoriSntatie (Psychology in health care: a practice orientation). Bohn Stafleu van Loghum, Houten, pp 253-268

50. ARHP Professional Papers Task Force (2002) The role of the psychologist in the management of rheumatic disease. Atlanta: Association of Rheumatology Health professionals (Oct cited 2004 May 31. Available from:http://www.rheumatology.org/ arhp/briefing/psych.asp?aud = rhp)

51. Taal E, Rasker J J, Wiegman O (1996) Patient education and self-management in the rheumatic diseases: a self-efficacy approach. Arthritis Care Res 9:229-238

52. Riemsma RP, Kirwan JR, Taal E, Rasker JJ (2002) Patient education for adults with rheumatoid arthritis (Cochrane review). Cochrane Database Syst Rev 3:CD003688

53. Riemsma RP, Taal E, Kirwan J, Rasker JJ (2002) Patient education programmes for adults with rheumatoid arthritis. Benefits are small and short lived. BMJ 325:558-559

54. Evers AWM, Kraaimaat FW, van Riel PLCM, de Jong AJL (2002) Tailored cognitive-behavioral therapy in early rheumatoid arthritis for patients at risk: a randomized controlled trial. Pain 100:141-153

55. Chorus AML, Miedema HS, Wevers CJ, Linden van der SJ (2000) Labour force participation among patients with rheumatoid arthritis. Ann Rheum Dis 59:549-554

56. Reneman MF, Joling CI, Soer EL, Goeken LN (2001) Func- tional capacity evaluation: ecological validity of three static endurance tests. Work 16:227-234

57. Reneman MF, Jaegers SM, Westmaas M, Goeken LN (2002) The reliability of determining effort level of lifting and carrying in a functional capacity evaluation. Work 18:23-27

58. Riemsma RP, Taal E, Rasker JJ, Klein G, Bruyn GAW, Wouters JMG, Wiegman O (1999) The burden of care for informal caregivers of patients with rheumatoid arthritis. Psy- chol Health 14:773-794

59. Bird HA, le Gallez P, Hill J (1985) Combined care of the rheumatic patient. Springer, Berlin Heidelberg New York

60. Ahlmen M, Sullivan M, Bjelle A (1988) Team vs non-team outpatient care in rheumatoid arthritis: a comprehensive outcome evaluation including an overall health measure. Arthritis Rheum 31:471-479

61. Jacobsson LT, Frithiof M, Olofsson Y e t al (1998) Evaluation of a structured multidisciplinary day care program in rheumatoid arthritis. Scand J Rheumatol 27:117-124

62. Nordstrom DC, Konttinen YT, Solovieva S, Friman C, San- tavirta S (1996) In- and outpatient rehabilitation in rheumatoid arthritis: a controlled, open, longitudinal, cost-effectiveness study. Scand J Rheumatol 25:200-206

63. Lambert CM, Hurst NP, Forbes JF, Lochhead A, Macleod M, Nuki G (1998) Is day care equivalent to inpatient care for active rheumatoid arthritis? Randomised controlled clinical and economic evaluation. BMJ 316:965-969

64. Riemsma RP, Taal E, Brus HL, Rasker JJ, Wiegman O (1997) Coordinated individual education with an arthritis passport for patientswithrheumatoid arthritis. Arthritis Care Res 10:238-249

65. Kaboli PJ, Doebbeling BN, Saag KG, Rosenthal GE (2001) Use of complementary and alternative medicine by older patients with arthritis: a population-based study. Arthritis Rheum 45:398-403

66. Rao JK, Mihaliak K, Kroenke K, Bradley J, Tierney WM, Weinberger M (1999) Use of complementary therapies for arthritis among patients of rheumatologists. Anla Intern Med 131:409-416

67. Jacobs JW, Rasker JJ, Bijlsma JW (2001) Alternative medicine in rheumatology: threat or challenge? Clin Exp Rheumatol 19:117-119

68. van Tubergen A, Landew6 R, van der Heijde D, Hidding A, Wolter N, Asscher M, Falkenbach A, Genth E, Goei The H, van der Linden Sj (2001) Combined spa-exercise therapy is effective in patients with ankylosing spondylitis: a randomized controlled trial. Arthritis Rheum 45:430-438

69. Zijlstra TR, van de Laar MA, Bernetot Moens H J, Taal E, Zakraoui L, Rasker JJ (2005) Spa treatment for primary fibromyalgia syndrome: a combination of thalassotherapy, exercise and patient education improves symptoms and quality of life. Rheumatology 44:539-546

197

70. Hatch S, Kickbusch I (1983) Self-help and health in Europe. WHO, Regional Office for Europe, Copenhagen

71. Bobiatynska E, Grupy samopomocy a zdrowie (Self-help groups and health) (1992). In: Karski JB, Sonska Z, Wasilewski B (eds) Promocja Zdrowia [Health Promotion]. IGNIS, War- saw, pp 364-375

72. People with Arthritis/Rheumatism in Europe. Manifesto for the third millennium (2000) (cited 2004 May 31). Available from: http://www.paremanifesto.org/home.htm

73. Klusas Branch V, Lipsky PS (1999) The use of trained arthritis patients in the instruction of the musculoskeletal examination. J Rheumatol 26 [Suppl 55]:52-55

74. Rasker JJ (1999) Attitude education in rheumatology. J Rheumatol 26 [Suppl 55]:41-42

75. EULAR Health Professionals News (2004) vot 6, no 1 (spring/ summer)

76. Cieza A, Stucki G (2004) New approaches to understanding the impact of musculoskeletal disorders. Best Pract Res Clin Rheumatol 18:141-154

77. Rasker JJ (2005) ILAR News. Report and review on the achievements and future plans of the ILAR Standing Com- mittee for Health Professionals. Clin Rheumatol 24:96-98

78. Reicher E (1960) Choroby Reumatyczne (Rheumatic diseases). PZWL Warszawa

79. The Madrid declaration (2002) (cited 2004 June 1). Available from: http://www.madriddeclaration.org/en/dec/dec.htm

80. Jfirgen M (2003) Biargerschaftliches Engagement im Gesund- heitswesen--unter besondere Beriicksichtigung der Patien- ten--Selbsthilfebewegung. Expertise for a German National Parliament Commission

81. Heginbotham C (1990) Return to community, the voluntary ethic and community care. Bedford Square Press, London

82. Karl Jaspers, Der Arzt im technischen Zeitalter, Miinchen, Ztirich, 1986 (erstmalig in Buchform), Karl Jaspers, Der Arzt im technischen Zeitalter, Vortrag, gehalten auf der 100. Tagung der Gesellschaft Deutscher Naturforscher und Aerzte in Wie- sbaden, 1958. Gedriickt in:Klinische Wochenschrift, November 1958

83. Doroszewski Jan Pojecie jako~ci 2,ycia a cele wsprczesnej me- dycyny (The concept of quality of life and goals of modern medicine) (1993) O~rodek Informacji. TOPOS, Warszawa

84. Monika Bobzien, Cornelia H6nigschmid, Wolfgang Stark, Entwicklungen und Trends in der gesundheitsbezogene Sel- bsthilfe (Zusammenfassung der Ergebnisse und Konsequenzen der Delphi--Umfrage, Perspektiven und neuere Entwicklungen in der gesundheitsbezogene Selbsthilfe), Essen und Miinchen 2002, Org. Lab Universit~it Duisburg-Essen

85. Carr A (ed) (2002) Defining the extended clinical role for allied health professionals in rheumatology. ARC conference proceedings no. 12, electronic version March 2002 Arthritis Research Campaign. http://www.arc.org.uk ISBN 1 901 815 04 8

86. Belza BA (2002) Celebration of rheumatology health professionals: we make the difference. Arthritis Rheum 47:111-113

Documents

Successfully living with chronic arthritis