- Email: [email protected]
How important is patient self-management?
BaillieÁre's Clinical Rheumatology Vol. 14, No. 4, pp. 705±714, 2000
doi:10.1053/berh.2000.0108, available online at http://www.idealibrary.com on
7 How important is patient self-management? Steven M. Edworthy
MD, FRCP(C)
Associate Professor of Medicine and Community Health Sciences Room 442, HMR Building, 3330 Hospital Drive NW, University of Calgary, Calgary, Alberta, Canada
This chapter addresses the issues associated with self-management in arthritis care. Alternative approaches to traditional medical care have gained popularity in the past decade. Some of the factors that have led to this are discussed in this chapter, including personal selfdetermination, the patient as consumer in a global economy, the backlash against medical technology, and fundamental questions about the medical model of care. Following this introduction, the goals of the Arthritis Self-Management and Bone-up on Arthritis Programs are outlined, along with the major theoretical underpinnings of both programmes. The impact of self-management programmes on the outcomes of disability, pain, depression and fatigue are reviewed, as are the potential implications for both the direct and indirect cost savings for a health system and society. The potential negative eects of self-management programmes are considered, and issues related to implementation, dissemination, quality control and longterm maintenance are reviewed. Finally, the value of self-management as a tool to be used eectively by the person with arthritis, in conjunction with his or her rheumatologist, is outlined. The relevance of well-established, valid and reliable self-management programmes is underscored by the growing number of people who seek help over the Internet. Without guidance, information can become harmful or distracting rather than helpful. Key words: arthritis; rheumatic disease; self-management; costs; outcomes; self-care; alternative therapy.
INTRODUCTION Overview of the ®eld `Self-management' is a term that has gained popularity over the past 20 years, particularly with the dissemination of the Arthritis Self-Management Program 1,2 across North America, Australia, New Zealand, the UK, northern Europe and parts of Africa during the 1980s. The term was coined to refer to that process in which patients accept responsibility for changing their health behaviours, obtain knowledge of their disease and its treatment, and forge meaningful relationships with their health-care providers. At the root of its meaning, however, self-management contains a notion of selfdetermination. That is, the patient takes control of decisions that relate to his or her own health care. This notion suggests that those with arthritis will seek and ®nd their own methods of healing, some of which may not involve the traditional Western approach of diagnosis and use of `evidence-based' treatment.3 Other approaches to arthritis care might include acupuncture, massage, herbal remedies, magnets, copper 1521±6942/00/040705+10 $35.00/00
c 2000 Harcourt Publishers Ltd. *
706 S. Edworthy
bracelets or spiritual healing4, none of which is easily assessed by the scienti®c approach of clinical trials or case-control methodology.4,5 Some rheumatologists, steeped in the scienti®c tradition and users of biomedical technology, are therefore uncomfortable with the concept of patient self-management, particularly as it applies to their own patients.6
Patient expectations Individuals with incurable chronic diseases such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, ankylosing spondylitis and osteo-arthritis often have diculty in accepting the limitations of our current lack of understanding of the disease process. Science and technology have been able to put a man on the moon, the argument goes, so if there were really an interest, science would ®nd a cure for arthritis. This expectation that medical science should ®nd a cure, when faced with the continued lack of a cure, leads to dissatisfaction generally. This dissatisfaction often results in a critical assessment of other services that physicians provide, resulting in a comparison with alternative therapists or service providers in terms of such elements as listening skills, compassion, waiting times and general responsiveness to concerns. Physicians are not seen as signi®cantly better in these areas and may at times compare negatively.7
Society's changes In today's global market economy, the person with arthritis is viewed as a consumer rather than a patient. Citizens are seeking information about diseases and their treatment, often bypassing the doctor by `sur®ng' the Internet to review symptoms and signs of disease or to ®nd treatment options.8 Products and services are advertised to the consumer without great concern for the scienti®c veracity of their claims. Patients seeking `cures' for their rheumatic disease are willing purchasers of these products and services. In one sense, they are practising self-management or selfcare. The widespread use of complementary and alternative therapies attests to the popularity of this approach with the public.9,10 It is now recognized that society spends almost as much on complementary medicine services and products as it does on traditional medicinal approaches. Fuelling this approach has been a negative public reaction to the benevolent, paternalistic approach of medicine. In addition, the alignment of physicians with the technological advances of biomedical science has produced a backlash resulting from the general distrust that portions of society have developed for technology in general. Society, particularly its younger members, has a concern that technology, and the science that produced it, has led to the current global problems that threaten the natural world. While seeking meaning in the face of chronic disease manifestations, people may turn towards `natural' cures that they hope will provide answers to their own personal dilemmas, as well as supporting the larger societal movement to protect the natural elements of the world. Hence claims that have not arisen from the scienti®c process but which appeal to the human inclination to believe in `natural powers' of healing are becoming as popular as medical approaches.5
Patient self-management 707
Rheumatologists' training Rheumatologists are taught to use medication based on the results of safety and ecacy trials. We are often sceptical by nature and reinforced by our training to disbelieve claims until they have been proved by `objectively conducted' scienti®c research. Our belief system is very strongly in¯uenced by the statistical approach to `truth' in which personal health is subjected to the hypothesis-testing procedures of randomization, outcome measurement, t-tests, multiple regression and other techniques of producing p-values of statistical signi®cance. Personal anecdotes of healing, although listened to, carry little weight in persuading us to change our overall approach to the prescribing process. There is therefore a natural antipathy toward the unexamined claims of the alternative therapy approaches oered to individuals with rheumatic complaints. Rheumatologists, albeit sympathetic to the needs of their patients, are restrained from providing the same self-assured promises of cure that accompany advertisements for magnets and herbs. Realism with regards to the conditions treated, rather than buoyant optimism, pervades our thoughts and actions.
WHAT IS SELF-MANAGEMENT? Notwithstanding the above comments, it is important for the purpose of the following discussion to distinguish validated and reliable self-management approaches from the movement toward individual self-determination and consumerism that accompanies the alternative therapy ®eld. Self-management, as espoused by Lorig and Goeppinger, incorporates a co-operative relationship with care providers and a careful scrutiny of alternative therapies.1,2 As such, self-management stresses the value of the health-care provider's relationship with the patient. These are well-designed programmes, which seek to build on the extensive research within the biomedical domain by extending the model of care to include changes in health behaviour, the utilization of community resources and the provision of knowledge and support to patients. In addition, these programmes, in order to avoid past mistakes in which the patient has been marginalized by the technology of care, acknowledge the need to involve patients as partners in care. As such, the foundation of this research has been qualitative in nature, with an exploration of patient needs through interviews and group discussions. This has led to the inclusion of the patient as teacher by choosing community leaders who are willing to dedicate time and eort to facilitating group learning sessions. Since the development of these programmes there has been widespread dissemination and considerable exploration of the eect they have on outcome. There are two theoretical frameworks within which the behavioural selfmanagement programmes operate. One of these approaches the situation with the perspective that patients `learn' to be helpless in the face of diseases that seem relentlessly to undermine their well-being and which are terribly unpredictable in their course.11,12 The theory of `learned helplessness' relates also to the concept that people have a locus of control that is either internal or external.13 That is, patients have an innate sense that they can control events around them, or they have a sense that events control them. Arthritis tends to create a sense of external control, shifting the patient into a state of `learned helplessness'. Self-care techniques are designed to combat this shift to the helpless state to which patients are prone. The second approach to developing a theoretical understanding of health behaviour and self-management has arisen from the social-cognitive theory of Bandura.14 In this
708 S. Edworthy
framework, a critical element is self-ecacy, or the con®dence to undertake behaviour that is goal directed.15 In addition, social-cognitive theory underscores the interaction between self-ecacy, expectation and knowledge. While knowledge is required for people to understand how disease mechanisms operate, or how medications are meant to work, it is also important that the expectations they have are realistic ± neither too optimistic nor too negative. However, to eect a change in behaviour such as improving adherence to a medication regimen, it is critical for the individual to combine relevant knowledge and appropriate expectations with the con®dence, or self-ecacy, that their behaviour can be accomplished. Therefore, self-management techniques are taught in the context of increasing `self-ecacy' to undertake newly learned skills. WHY BOTHER WITH SELF-MANAGEMENT? Better outcome One of the primary reasons for considering self-management programmes for patients is the desire to achieve a better outcome. The major outcomes of interest include disability, pain, fatigue and depression. It has been demonstrated that knowledge and skills, which counteract the debilitating eects of chronic rheumatic disease, can be imparted to the patient through a programme of staged educational events. Patients who complete the Arthritis Self-Management Program (ASMP) or Bone up on Arthritis course have been shown to have a sustained bene®t with respect to these primary outcomes in a number of dierent settings.16,17 The magnitude of this bene®t over and above that which can be achieved by medication is signi®cant, within both the statistical meaning of the word and its clinical meaning.18 Lower cost Another advantage of self-management programmes is that they can be provided with little more than a ¯ipchart and a meeting place. Moreover, patients are usually required to pay for their participation in order to cover the basic cost of running the programme. This not only keeps the ®nancial cost to society greatly reduced, but also creates an expectation within the patient to succeed in order to bene®t in some fashion from their expenditure. Improved relationship with providers A third reason to consider self-management programmes for patients is to encourage a better use of the time spent with the physician and other health-care providers. As the demands for physician time increase, and the number of trained rheumatologists plateaus or diminishes, there is an increasing likelihood that patients will have less access to knowledgeable professionals. HOW IMPORTANT IS IT? Is it eective? Enough trials have been performed to indicate that patients who take one of these courses bene®t in terms of the primary outcomes mentioned above. In controlled
Patient self-management 709
studies involving primarily osteo-arthritis and rheumatoid arthritis, there has, even from the early experiments, been evidence that pain and depression can be ameliorated.19 Further studies provide evidence that the results can be sustained for at least 1 year.20 These studies, designed to test the onset of bene®t as well as the persistence of eect, obtained measurements at 4 and 12 months. Fatigue, although a critical factor21, has not been measured in adequately designed trials to determine the eect. Other studies have demonstrated a short-term bene®t to patients with ®bromyalgia in terms of quality of life and ®bromyalgia symptoms.22 Does it save money? The total cost of musculoskeletal disability was estimated to be $149.4 billion US based on self-reported information published in 1995.23 Yelin and Callahan23 point out that this is probably an underestimate of the true burden of illness when one considers that more women than men are aected and that the human capital approach to estimating cost undervalues women, particularly in their roles as care-givers, home-makers and community volunteers. Moreover, the contribution of the elderly, who have the greatest prevalence of disability related to arthritis, to the economy is not accounted for in the same fashion as that of younger populations. In addition, the cost of diagnosis and intervention related to arthritis is less than that of other conditions such as heart disease or renal disease, because of the dierence in the cost of the underlying investigative and interventional strategies that are currently employed in the healthcare system. Nevertheless, the amount of musculoskeletal disability and decreased personal function has a considerable impact on the workforce, the home and the recreational pursuits of individuals and families. There are several ways in which improved patient self-management could theoretically save money for the system at large. Visits to physicians are intended to be more productive, questions relevant to the patient's primary interests being addressed. This is meant to result in more eective decision-making on the part of the patient and physician during the limited time of the surgery visit. One could speculate that there would be a lower requirement for arthritis-related visits if each visit were more eective. In certain jurisdictions, this has been noted24, but it is not a uniform ®nding.17 Although there is no clear explanation for this dierence, it could relate to the underlying economics of each health-care system. Systems that draw on the patient's own marginal income for physician visits would dissuade patients from accessing the system if this were deemed unnecessary. On the other hand, the demand for services might increase in systems that do not charge the patient individually for the surgery visit. Moreover, participants who have felt helpless in the face of their disease may develop more con®dence in, as well as a greater sense of entitlement, to access health-care resources such as physiotherapy, occupational therapy, physician's oces or laboratory services. The impact of this on health-care costs will depend on the relative value attached to each of these elements. Another expectation of the self-management programme is that patients will develop a better medication adherence pattern. Improved adherence would reduce the amount of unnecessary co-prescription of similar class drugs, ensure a better biological availability of drugs through an improved dosing schedule, and reduce the risk of complications secondary to gastrointestinal, cardiovascular, central nervous system or renal side-eects. Since drug cost is one of the most rapidly rising components of most health-care systems, this could be a major bene®t. This reduction could also aect the utilization of health system resources such as emergency room
710 S. Edworthy
visits, hospitalization and diagnostic work-ups for symptoms such as dyspepsia, shortness of breath, hypertension, headaches and lightheadedness. Informed patients, who can begin to use new-found skills with con®dence, may begin to reverse the trend toward helplessness to which they are vulnerable. If the behavioural goals of the programme are met, the patient will contract to perform appropriate physical exercises, improve dietary habits and abandon negative health behaviours such as smoking. With this, one would expect fewer sick days and less requirement for assistance to carry out activities of daily living. There could therefore be a reduction in the indirect cost associated with rheumatic disease. WHEN DOESN'T IT WORK? Interesting work by Rankin25 has shown that not everybody wishes to take the ASMP or other courses on self-management. In a study of patients who were oered the course, it was found that approximately half of those approached were not interested in taking it up. No particular demographic, educational or ethnic characteristics emerged to distinguish participants from those who opted not to participate. There was, however, a tendency towards patients with more severe disease volunteering to participate. Examining the populations that have been studied to date indicates that the classes are primarily made up of Caucasian females who are middle-aged to elderly, with at least grade 12 education, and who have either osteo-arthritis, rheumatoid arthritis or ®bromyalgia.1 Therefore, populations with a poorer education, a dierent race, male gender or a younger age may not bene®t. These groups have not yet accessed the programmes suciently to know whether there would be bene®t. Diagnosis Incorrect diagnostic impressions on the part of patients may interfere with the bene®ts of the programme. Patients' self-reported diagnoses do not always coincide with those of the physician. Hence the basic applicability of dierent therapies creates confusion for these patients. This is particularly troublesome when medication is discussed, since some class participants seek the opinions of their classmates who have other disease conditions. The presence of ®bromyalgia, often a complicating factor, further confuses the matter for those who have it alone or coincident with other conditions. Symptoms of myalgia may be construed as those of arthritis, creating a situation in which expectations of bene®t from certain types of medication could be entirely inappropriate. Without the bene®t of expert diagnostic capability at the time of course participation, the participant may suer the consequence of the saying `a little knowledge can be a dangerous thing'. Side-eects As with other therapeutic manoeuvres, there can be unwanted side-eects from the dissemination of lay-led self-management courses. One occasionally hears of leaders wishing to sell their own products or not adhering to the text of the course. Other concerns have arisen when patients provide testimonial evidence of the bene®ts of magnets, multivitamins or herbal remedies. This situation is usually quickly addressed if there is an organization with quality control measures in place. Over time, however,
Patient self-management 711
the ability to maintain an adequate quality assurance programme is eroded unless it is built into the long-term business plan of the sponsoring organization. Relaxed attention from the provider There may be a potential for primary care providers to assume that the selfmanagement programmes are a replacement for referral to an appropriate specialist. In today's environment of cost reduction, there is pressure to transfer the cost of health care to the consumer and away from the insurer or government payer. This could lead to the false assumption that individuals taking the course can make all dicult decisions regarding their care entirely by themselves, or that patients are correct in altering their medication regimen or adding alternative remedies to their management without con®rming this with their prescribing physician. This is of particular concern with regard to individuals on remittive or immunosuppressive therapy.
PRACTICALITIES OF IMPLEMENTATION Training Implementing a co-ordinated programme of self-management demands considerable planning and eort. It usually requires the sponsorship of an organization aliated with the community and familiar with various aspects of volunteerism.26 Prime examples of such organizations are the Arthritis Foundation of America and the Arthritis Society of Canada. These organizations have endorsed selfmanagement programmes and sponsored their dissemination. In doing so, they have undertaken the training of individuals from the community who have become programme leaders or facilitators. The task of advertising the programme to the community is handled well by such organizations. They have also managed the registration of people on the programme, the booking of meeting areas and the provision of educational materials. Without this general assistance in start-up and maintenance, it is dicult to manage a sustained eort with respect to a self-management programme. In addition, such organizations play an important role in maintaining the quality of programme delivery. Leaders occasionally require extra support, or may need a rest from leading courses, in order to recuperate from the eects of their own condition. The pool of leaders generally needs to be replenished as more courses are given. The recruitment and training of new leaders again becomes the responsibility of the sponsoring organization. Linkage with other disciplines Many of the topics and activities of the self-management programmes mirror the professional roles of physiotherapists, occupational therapists and nurses, as well as doctors. Therefore, to be successful, it is essential that a linkage with these disciplines occurs, either through the sponsoring organization or through the patients themselves. The ideal situation is one in which these providers are invited to review the course materials and engage with the course facilitators in a collegial fashion.
712 S. Edworthy
The rheumatologist as partner/leader Rheumatologists, in their position as diagnosticians, counsellors and professional managers of diverse therapeutic regimens for rheumatic disease patients, can be extremely important to the process of implementing self-management programmes. At a national level, participation in the development and ongoing assessment of the programme can provide an excellent reference point for the sponsoring organizations. This helps with their ongoing quality assurance. Since one of the goals of the programme is to encourage a good relationship with the care providers, it helps if the providers are aware of the programme content and can utilize this awareness to foster the patient's success with new behaviours. Encouraging patients who have the underlying skills required for leadership is another aspect in which rheumatologists can provide valuable assistance to the implementation of programmes. The rheumatologist often has a very good appreciation of the patient's personality, skills and background, which allows him or her to make appropriate references to the programme.
SUMMARY Self-determination of the response to illness, guided by knowledge and reason, can be the cornerstone of an individual's health.27 This chapter began with a description of some trends in society today that could undermine the gains to be obtained from biomedical technology and its application to rheumatic disease care. It is, however, recognized that there are tools available that may assist some patients in participating consciously in the management of arthritis conditions. The fostering of self-management techniques, particularly as developed in the comprehensive programmes now available, will have few negative consequences and may have a considerable bene®t for patients. There is now a great deal of experience with lay-led community self-management programmes. Other approaches to encouraging appropriate self-management techniques, such as professionally led programmes, mail-out programmes, and Internetbased communication, will build on this solid base for the future. The general monetary value experienced by any particular health system will depend on the underlying manner in which funding, payment and reimbursement are handled. Indirect costs to patients will depend on how much value is placed on their own time and resources. In health care, we cannot aord to ignore approaches that will be of value to our patients. Thus, as rheumatologists, it behoves us to expand our therapeutic horizons to include approaches that involve collaboration with other health providers, community organizations and patients seeking an understanding of the myriad of products and services being oered.28 An awareness of the self-management programmes that have been developed and tested by two unique research groups is thus very important. Much has been learned about the `non-medicinal' healing powers of knowledge, appropriate expectations and con®dence to undertake healthful behaviours. Given the trends towards an unexamined use of alternative therapies, and a lack of understanding of how these can bene®t or harm patients, it is essential that rheumatologists support well-designed programmes that assist patients to manage their conditions. The work of the past 20 years can be built upon as more becomes known about the mechanisms of optimizing healthful behaviour, the good use of
Patient self-management 713
existing resources and wise decision-making. Near-tragedies, such as the one in which a patient sought an alternative herbal agent over the Internet, without appropriate guidance and caution, then developing acute renal failure, will thus hopefully be avoided.29 REFERENCES * 1. Goeppinger J & Lorig K. Interventions to reduce the impact of chronic disease: community-based arthritis patient education [review]. Annual Review of Nursing Research 1997; 15: 101±122. 2. Lorig K & Gonzalez VM. The integration of theory with practice: a 12-year case study. Health Education Quarterly 1992; 19(3): 355±368. 3. Rao JK, Mihaliak K, Kroenke K et al. Use of complementary therapies for arthritis among patients of rheumatologists. Annals of Internal Medicine 1999; 131(6): 409±416. 4. Price JM, Hillman KS, Toral ME & Newell S. The public's perceptions and misperceptions of arthritis. Arthritis and Rheumatism 1983; 26(8): 1023±1028. * 5. Kaptchuk TJ & Eisenberg DM. The persuasive appeal of alternative medicine. Annals of Internal Medicine 1998; 129: 1061±1065. 6. Visser GJ, Peters L & Rasker JJ. Rheumatologists and their patients who seek alternative care; an agreement to disagree. British Journal of Rheumatology 1992; 31: 485±490. 7. Meininger JC. Sex dierences in factors associated with use of medical care and alternative illness behaviors. Social Sciences in Medicine 1986; 22(3): 285±292. 8. Edworthy SM. World Wide Web: Opportunities challenges and threats. Lupus 1999; 8: 596±605. 9. Eisenberg DM, Kessler RC, Foster C et al. Unconventional medicine in the United States. New England Journal of Medicine 1993; 328: 246±252. 10. MacLennan AH, Wilson DH & Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569±573. *11. Maier SF & Seligman MEP. Learned helplessness: theory and evidence. Journal of Experimental Psychology 1976; 105: 3±46. 12. Abramson LY, Seligman MEP & Teasdale JD. Learned helplessness in humans: critique and reformulation. Journal of Abnormal Psychology 1978; 87: 49±74. 13. Burckhardt CS & Bjelle A. Perceived control: a comparison of women with ®bromyalgia, rheumatoid arthritis, and systemic lupus erythematosus using a Swedish version of the Rheumatology Attitudes Index. Scandinavian Journal of Rheumatology 1996; 25(5): 300±306. *14. Bandura A. Social Foundations for Thought and Action: A Social Cognitive Theory. Englewood, NJ: PrenticeHall, 1986. 15. Taal E, Rasker JJ & Wiegman O. Patient education and self-management in the rheumatic diseases: a selfecacy approach [review]. Arthritis Care and Research 1996; 9(3): 229±238. 16. Goeppinger J, Arthur MW, Baglioni AJ et al. A reexamination of the eectiveness of self-care education for persons with arthritis. Arthritis and Rheumatism 1989; 32: 706±716. *17. Barlow JH, Turner AP & Wright CC. Long-term outcomes of an arthritis self-management programme. British Journal of Rheumatology 1998; 37(12): 1315±1319. 18. Superio-Cabuslay E, Ward MM & Lorig K. Patient education interventions in osteoarthritis and rheumatoid arthritis: a meta-analytic comparison with nonsteroidal anti-in¯ammatory drug treatment. Arthritis Care and Research 1996; 9: 292±301. 19. Lorig K, Lubeck D, Kraines RG et al. Outcomes of self-help education for patients with arthritis. Arthritis and Rheumatism 1985; 36: 680±685. 20. Lorig K & Holman H. Long-term outcomes of an arthritis self-management study: eects of reinforcement eorts. Social Science and Medicine 1989; 29: 221±224. 21. Belza BL. The impact of fatigue on exercise performance. Arthritis Care and Research 1994; 7: 176±180. 22. Burckhardt CS & Bjelle A. Education programmes for ®bromyalgia patients: description and evaluation. BallieÁre's Clinical Rheumatology 1994; 8: 935±955. *23. Yelin E & Callahan LF. The economic cost and social and psychological impact of musculoskeletal conditions. Arthritis and Rheumatism 1995; 38(10): 1351±1362. *24. Lorig K, Mazonson P & Holman H. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health bene®ts while reducing health care costs. Arthritis and Rheumatism 1993; 36: 439±446. 25. Rankin JA. Determinants of participation in an arthritis self management program (microform). Unpublished, University of Calgary Library, 1998.
714 S. Edworthy 26. Oppewal SR. Implementing a community-based innovation: organizational challenges and strategies. Family and Community Health 1992; 15: 70±79. 27. Holman HR & Lorig KR. Patient education: essential to good health care for patients with chronic arthritis [editorial, comment]. Arthritis and Rheumatism 1997; 40(8): 1371±1373. *28. Callahan LF & Pincus T. Education, self-care, and outcomes of rheumatic diseases: further challenges to the `biomedical model' paradigm [editorial, review]. Arthritis Care and Research 1997; 10(5): 283±288. 29. Weisbord SD, Soule JB & Kimmel PL. Poison on line ± acute renal failure caused by oil of wormwood purchased through the internet. New England Journal of Medicine 1997; 337(12): 825±827.
doi:10.1053/berh.2000.0108, available online at http://www.idealibrary.com on
7 How important is patient self-management? Steven M. Edworthy
MD, FRCP(C)
Associate Professor of Medicine and Community Health Sciences Room 442, HMR Building, 3330 Hospital Drive NW, University of Calgary, Calgary, Alberta, Canada
This chapter addresses the issues associated with self-management in arthritis care. Alternative approaches to traditional medical care have gained popularity in the past decade. Some of the factors that have led to this are discussed in this chapter, including personal selfdetermination, the patient as consumer in a global economy, the backlash against medical technology, and fundamental questions about the medical model of care. Following this introduction, the goals of the Arthritis Self-Management and Bone-up on Arthritis Programs are outlined, along with the major theoretical underpinnings of both programmes. The impact of self-management programmes on the outcomes of disability, pain, depression and fatigue are reviewed, as are the potential implications for both the direct and indirect cost savings for a health system and society. The potential negative eects of self-management programmes are considered, and issues related to implementation, dissemination, quality control and longterm maintenance are reviewed. Finally, the value of self-management as a tool to be used eectively by the person with arthritis, in conjunction with his or her rheumatologist, is outlined. The relevance of well-established, valid and reliable self-management programmes is underscored by the growing number of people who seek help over the Internet. Without guidance, information can become harmful or distracting rather than helpful. Key words: arthritis; rheumatic disease; self-management; costs; outcomes; self-care; alternative therapy.
INTRODUCTION Overview of the ®eld `Self-management' is a term that has gained popularity over the past 20 years, particularly with the dissemination of the Arthritis Self-Management Program 1,2 across North America, Australia, New Zealand, the UK, northern Europe and parts of Africa during the 1980s. The term was coined to refer to that process in which patients accept responsibility for changing their health behaviours, obtain knowledge of their disease and its treatment, and forge meaningful relationships with their health-care providers. At the root of its meaning, however, self-management contains a notion of selfdetermination. That is, the patient takes control of decisions that relate to his or her own health care. This notion suggests that those with arthritis will seek and ®nd their own methods of healing, some of which may not involve the traditional Western approach of diagnosis and use of `evidence-based' treatment.3 Other approaches to arthritis care might include acupuncture, massage, herbal remedies, magnets, copper 1521±6942/00/040705+10 $35.00/00
c 2000 Harcourt Publishers Ltd. *
706 S. Edworthy
bracelets or spiritual healing4, none of which is easily assessed by the scienti®c approach of clinical trials or case-control methodology.4,5 Some rheumatologists, steeped in the scienti®c tradition and users of biomedical technology, are therefore uncomfortable with the concept of patient self-management, particularly as it applies to their own patients.6
Patient expectations Individuals with incurable chronic diseases such as rheumatoid arthritis, systemic lupus erythematosus, scleroderma, ankylosing spondylitis and osteo-arthritis often have diculty in accepting the limitations of our current lack of understanding of the disease process. Science and technology have been able to put a man on the moon, the argument goes, so if there were really an interest, science would ®nd a cure for arthritis. This expectation that medical science should ®nd a cure, when faced with the continued lack of a cure, leads to dissatisfaction generally. This dissatisfaction often results in a critical assessment of other services that physicians provide, resulting in a comparison with alternative therapists or service providers in terms of such elements as listening skills, compassion, waiting times and general responsiveness to concerns. Physicians are not seen as signi®cantly better in these areas and may at times compare negatively.7
Society's changes In today's global market economy, the person with arthritis is viewed as a consumer rather than a patient. Citizens are seeking information about diseases and their treatment, often bypassing the doctor by `sur®ng' the Internet to review symptoms and signs of disease or to ®nd treatment options.8 Products and services are advertised to the consumer without great concern for the scienti®c veracity of their claims. Patients seeking `cures' for their rheumatic disease are willing purchasers of these products and services. In one sense, they are practising self-management or selfcare. The widespread use of complementary and alternative therapies attests to the popularity of this approach with the public.9,10 It is now recognized that society spends almost as much on complementary medicine services and products as it does on traditional medicinal approaches. Fuelling this approach has been a negative public reaction to the benevolent, paternalistic approach of medicine. In addition, the alignment of physicians with the technological advances of biomedical science has produced a backlash resulting from the general distrust that portions of society have developed for technology in general. Society, particularly its younger members, has a concern that technology, and the science that produced it, has led to the current global problems that threaten the natural world. While seeking meaning in the face of chronic disease manifestations, people may turn towards `natural' cures that they hope will provide answers to their own personal dilemmas, as well as supporting the larger societal movement to protect the natural elements of the world. Hence claims that have not arisen from the scienti®c process but which appeal to the human inclination to believe in `natural powers' of healing are becoming as popular as medical approaches.5
Patient self-management 707
Rheumatologists' training Rheumatologists are taught to use medication based on the results of safety and ecacy trials. We are often sceptical by nature and reinforced by our training to disbelieve claims until they have been proved by `objectively conducted' scienti®c research. Our belief system is very strongly in¯uenced by the statistical approach to `truth' in which personal health is subjected to the hypothesis-testing procedures of randomization, outcome measurement, t-tests, multiple regression and other techniques of producing p-values of statistical signi®cance. Personal anecdotes of healing, although listened to, carry little weight in persuading us to change our overall approach to the prescribing process. There is therefore a natural antipathy toward the unexamined claims of the alternative therapy approaches oered to individuals with rheumatic complaints. Rheumatologists, albeit sympathetic to the needs of their patients, are restrained from providing the same self-assured promises of cure that accompany advertisements for magnets and herbs. Realism with regards to the conditions treated, rather than buoyant optimism, pervades our thoughts and actions.
WHAT IS SELF-MANAGEMENT? Notwithstanding the above comments, it is important for the purpose of the following discussion to distinguish validated and reliable self-management approaches from the movement toward individual self-determination and consumerism that accompanies the alternative therapy ®eld. Self-management, as espoused by Lorig and Goeppinger, incorporates a co-operative relationship with care providers and a careful scrutiny of alternative therapies.1,2 As such, self-management stresses the value of the health-care provider's relationship with the patient. These are well-designed programmes, which seek to build on the extensive research within the biomedical domain by extending the model of care to include changes in health behaviour, the utilization of community resources and the provision of knowledge and support to patients. In addition, these programmes, in order to avoid past mistakes in which the patient has been marginalized by the technology of care, acknowledge the need to involve patients as partners in care. As such, the foundation of this research has been qualitative in nature, with an exploration of patient needs through interviews and group discussions. This has led to the inclusion of the patient as teacher by choosing community leaders who are willing to dedicate time and eort to facilitating group learning sessions. Since the development of these programmes there has been widespread dissemination and considerable exploration of the eect they have on outcome. There are two theoretical frameworks within which the behavioural selfmanagement programmes operate. One of these approaches the situation with the perspective that patients `learn' to be helpless in the face of diseases that seem relentlessly to undermine their well-being and which are terribly unpredictable in their course.11,12 The theory of `learned helplessness' relates also to the concept that people have a locus of control that is either internal or external.13 That is, patients have an innate sense that they can control events around them, or they have a sense that events control them. Arthritis tends to create a sense of external control, shifting the patient into a state of `learned helplessness'. Self-care techniques are designed to combat this shift to the helpless state to which patients are prone. The second approach to developing a theoretical understanding of health behaviour and self-management has arisen from the social-cognitive theory of Bandura.14 In this
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framework, a critical element is self-ecacy, or the con®dence to undertake behaviour that is goal directed.15 In addition, social-cognitive theory underscores the interaction between self-ecacy, expectation and knowledge. While knowledge is required for people to understand how disease mechanisms operate, or how medications are meant to work, it is also important that the expectations they have are realistic ± neither too optimistic nor too negative. However, to eect a change in behaviour such as improving adherence to a medication regimen, it is critical for the individual to combine relevant knowledge and appropriate expectations with the con®dence, or self-ecacy, that their behaviour can be accomplished. Therefore, self-management techniques are taught in the context of increasing `self-ecacy' to undertake newly learned skills. WHY BOTHER WITH SELF-MANAGEMENT? Better outcome One of the primary reasons for considering self-management programmes for patients is the desire to achieve a better outcome. The major outcomes of interest include disability, pain, fatigue and depression. It has been demonstrated that knowledge and skills, which counteract the debilitating eects of chronic rheumatic disease, can be imparted to the patient through a programme of staged educational events. Patients who complete the Arthritis Self-Management Program (ASMP) or Bone up on Arthritis course have been shown to have a sustained bene®t with respect to these primary outcomes in a number of dierent settings.16,17 The magnitude of this bene®t over and above that which can be achieved by medication is signi®cant, within both the statistical meaning of the word and its clinical meaning.18 Lower cost Another advantage of self-management programmes is that they can be provided with little more than a ¯ipchart and a meeting place. Moreover, patients are usually required to pay for their participation in order to cover the basic cost of running the programme. This not only keeps the ®nancial cost to society greatly reduced, but also creates an expectation within the patient to succeed in order to bene®t in some fashion from their expenditure. Improved relationship with providers A third reason to consider self-management programmes for patients is to encourage a better use of the time spent with the physician and other health-care providers. As the demands for physician time increase, and the number of trained rheumatologists plateaus or diminishes, there is an increasing likelihood that patients will have less access to knowledgeable professionals. HOW IMPORTANT IS IT? Is it eective? Enough trials have been performed to indicate that patients who take one of these courses bene®t in terms of the primary outcomes mentioned above. In controlled
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studies involving primarily osteo-arthritis and rheumatoid arthritis, there has, even from the early experiments, been evidence that pain and depression can be ameliorated.19 Further studies provide evidence that the results can be sustained for at least 1 year.20 These studies, designed to test the onset of bene®t as well as the persistence of eect, obtained measurements at 4 and 12 months. Fatigue, although a critical factor21, has not been measured in adequately designed trials to determine the eect. Other studies have demonstrated a short-term bene®t to patients with ®bromyalgia in terms of quality of life and ®bromyalgia symptoms.22 Does it save money? The total cost of musculoskeletal disability was estimated to be $149.4 billion US based on self-reported information published in 1995.23 Yelin and Callahan23 point out that this is probably an underestimate of the true burden of illness when one considers that more women than men are aected and that the human capital approach to estimating cost undervalues women, particularly in their roles as care-givers, home-makers and community volunteers. Moreover, the contribution of the elderly, who have the greatest prevalence of disability related to arthritis, to the economy is not accounted for in the same fashion as that of younger populations. In addition, the cost of diagnosis and intervention related to arthritis is less than that of other conditions such as heart disease or renal disease, because of the dierence in the cost of the underlying investigative and interventional strategies that are currently employed in the healthcare system. Nevertheless, the amount of musculoskeletal disability and decreased personal function has a considerable impact on the workforce, the home and the recreational pursuits of individuals and families. There are several ways in which improved patient self-management could theoretically save money for the system at large. Visits to physicians are intended to be more productive, questions relevant to the patient's primary interests being addressed. This is meant to result in more eective decision-making on the part of the patient and physician during the limited time of the surgery visit. One could speculate that there would be a lower requirement for arthritis-related visits if each visit were more eective. In certain jurisdictions, this has been noted24, but it is not a uniform ®nding.17 Although there is no clear explanation for this dierence, it could relate to the underlying economics of each health-care system. Systems that draw on the patient's own marginal income for physician visits would dissuade patients from accessing the system if this were deemed unnecessary. On the other hand, the demand for services might increase in systems that do not charge the patient individually for the surgery visit. Moreover, participants who have felt helpless in the face of their disease may develop more con®dence in, as well as a greater sense of entitlement, to access health-care resources such as physiotherapy, occupational therapy, physician's oces or laboratory services. The impact of this on health-care costs will depend on the relative value attached to each of these elements. Another expectation of the self-management programme is that patients will develop a better medication adherence pattern. Improved adherence would reduce the amount of unnecessary co-prescription of similar class drugs, ensure a better biological availability of drugs through an improved dosing schedule, and reduce the risk of complications secondary to gastrointestinal, cardiovascular, central nervous system or renal side-eects. Since drug cost is one of the most rapidly rising components of most health-care systems, this could be a major bene®t. This reduction could also aect the utilization of health system resources such as emergency room
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visits, hospitalization and diagnostic work-ups for symptoms such as dyspepsia, shortness of breath, hypertension, headaches and lightheadedness. Informed patients, who can begin to use new-found skills with con®dence, may begin to reverse the trend toward helplessness to which they are vulnerable. If the behavioural goals of the programme are met, the patient will contract to perform appropriate physical exercises, improve dietary habits and abandon negative health behaviours such as smoking. With this, one would expect fewer sick days and less requirement for assistance to carry out activities of daily living. There could therefore be a reduction in the indirect cost associated with rheumatic disease. WHEN DOESN'T IT WORK? Interesting work by Rankin25 has shown that not everybody wishes to take the ASMP or other courses on self-management. In a study of patients who were oered the course, it was found that approximately half of those approached were not interested in taking it up. No particular demographic, educational or ethnic characteristics emerged to distinguish participants from those who opted not to participate. There was, however, a tendency towards patients with more severe disease volunteering to participate. Examining the populations that have been studied to date indicates that the classes are primarily made up of Caucasian females who are middle-aged to elderly, with at least grade 12 education, and who have either osteo-arthritis, rheumatoid arthritis or ®bromyalgia.1 Therefore, populations with a poorer education, a dierent race, male gender or a younger age may not bene®t. These groups have not yet accessed the programmes suciently to know whether there would be bene®t. Diagnosis Incorrect diagnostic impressions on the part of patients may interfere with the bene®ts of the programme. Patients' self-reported diagnoses do not always coincide with those of the physician. Hence the basic applicability of dierent therapies creates confusion for these patients. This is particularly troublesome when medication is discussed, since some class participants seek the opinions of their classmates who have other disease conditions. The presence of ®bromyalgia, often a complicating factor, further confuses the matter for those who have it alone or coincident with other conditions. Symptoms of myalgia may be construed as those of arthritis, creating a situation in which expectations of bene®t from certain types of medication could be entirely inappropriate. Without the bene®t of expert diagnostic capability at the time of course participation, the participant may suer the consequence of the saying `a little knowledge can be a dangerous thing'. Side-eects As with other therapeutic manoeuvres, there can be unwanted side-eects from the dissemination of lay-led self-management courses. One occasionally hears of leaders wishing to sell their own products or not adhering to the text of the course. Other concerns have arisen when patients provide testimonial evidence of the bene®ts of magnets, multivitamins or herbal remedies. This situation is usually quickly addressed if there is an organization with quality control measures in place. Over time, however,
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the ability to maintain an adequate quality assurance programme is eroded unless it is built into the long-term business plan of the sponsoring organization. Relaxed attention from the provider There may be a potential for primary care providers to assume that the selfmanagement programmes are a replacement for referral to an appropriate specialist. In today's environment of cost reduction, there is pressure to transfer the cost of health care to the consumer and away from the insurer or government payer. This could lead to the false assumption that individuals taking the course can make all dicult decisions regarding their care entirely by themselves, or that patients are correct in altering their medication regimen or adding alternative remedies to their management without con®rming this with their prescribing physician. This is of particular concern with regard to individuals on remittive or immunosuppressive therapy.
PRACTICALITIES OF IMPLEMENTATION Training Implementing a co-ordinated programme of self-management demands considerable planning and eort. It usually requires the sponsorship of an organization aliated with the community and familiar with various aspects of volunteerism.26 Prime examples of such organizations are the Arthritis Foundation of America and the Arthritis Society of Canada. These organizations have endorsed selfmanagement programmes and sponsored their dissemination. In doing so, they have undertaken the training of individuals from the community who have become programme leaders or facilitators. The task of advertising the programme to the community is handled well by such organizations. They have also managed the registration of people on the programme, the booking of meeting areas and the provision of educational materials. Without this general assistance in start-up and maintenance, it is dicult to manage a sustained eort with respect to a self-management programme. In addition, such organizations play an important role in maintaining the quality of programme delivery. Leaders occasionally require extra support, or may need a rest from leading courses, in order to recuperate from the eects of their own condition. The pool of leaders generally needs to be replenished as more courses are given. The recruitment and training of new leaders again becomes the responsibility of the sponsoring organization. Linkage with other disciplines Many of the topics and activities of the self-management programmes mirror the professional roles of physiotherapists, occupational therapists and nurses, as well as doctors. Therefore, to be successful, it is essential that a linkage with these disciplines occurs, either through the sponsoring organization or through the patients themselves. The ideal situation is one in which these providers are invited to review the course materials and engage with the course facilitators in a collegial fashion.
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The rheumatologist as partner/leader Rheumatologists, in their position as diagnosticians, counsellors and professional managers of diverse therapeutic regimens for rheumatic disease patients, can be extremely important to the process of implementing self-management programmes. At a national level, participation in the development and ongoing assessment of the programme can provide an excellent reference point for the sponsoring organizations. This helps with their ongoing quality assurance. Since one of the goals of the programme is to encourage a good relationship with the care providers, it helps if the providers are aware of the programme content and can utilize this awareness to foster the patient's success with new behaviours. Encouraging patients who have the underlying skills required for leadership is another aspect in which rheumatologists can provide valuable assistance to the implementation of programmes. The rheumatologist often has a very good appreciation of the patient's personality, skills and background, which allows him or her to make appropriate references to the programme.
SUMMARY Self-determination of the response to illness, guided by knowledge and reason, can be the cornerstone of an individual's health.27 This chapter began with a description of some trends in society today that could undermine the gains to be obtained from biomedical technology and its application to rheumatic disease care. It is, however, recognized that there are tools available that may assist some patients in participating consciously in the management of arthritis conditions. The fostering of self-management techniques, particularly as developed in the comprehensive programmes now available, will have few negative consequences and may have a considerable bene®t for patients. There is now a great deal of experience with lay-led community self-management programmes. Other approaches to encouraging appropriate self-management techniques, such as professionally led programmes, mail-out programmes, and Internetbased communication, will build on this solid base for the future. The general monetary value experienced by any particular health system will depend on the underlying manner in which funding, payment and reimbursement are handled. Indirect costs to patients will depend on how much value is placed on their own time and resources. In health care, we cannot aord to ignore approaches that will be of value to our patients. Thus, as rheumatologists, it behoves us to expand our therapeutic horizons to include approaches that involve collaboration with other health providers, community organizations and patients seeking an understanding of the myriad of products and services being oered.28 An awareness of the self-management programmes that have been developed and tested by two unique research groups is thus very important. Much has been learned about the `non-medicinal' healing powers of knowledge, appropriate expectations and con®dence to undertake healthful behaviours. Given the trends towards an unexamined use of alternative therapies, and a lack of understanding of how these can bene®t or harm patients, it is essential that rheumatologists support well-designed programmes that assist patients to manage their conditions. The work of the past 20 years can be built upon as more becomes known about the mechanisms of optimizing healthful behaviour, the good use of
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existing resources and wise decision-making. Near-tragedies, such as the one in which a patient sought an alternative herbal agent over the Internet, without appropriate guidance and caution, then developing acute renal failure, will thus hopefully be avoided.29 REFERENCES * 1. Goeppinger J & Lorig K. Interventions to reduce the impact of chronic disease: community-based arthritis patient education [review]. Annual Review of Nursing Research 1997; 15: 101±122. 2. Lorig K & Gonzalez VM. The integration of theory with practice: a 12-year case study. Health Education Quarterly 1992; 19(3): 355±368. 3. Rao JK, Mihaliak K, Kroenke K et al. Use of complementary therapies for arthritis among patients of rheumatologists. Annals of Internal Medicine 1999; 131(6): 409±416. 4. Price JM, Hillman KS, Toral ME & Newell S. The public's perceptions and misperceptions of arthritis. Arthritis and Rheumatism 1983; 26(8): 1023±1028. * 5. Kaptchuk TJ & Eisenberg DM. The persuasive appeal of alternative medicine. Annals of Internal Medicine 1998; 129: 1061±1065. 6. Visser GJ, Peters L & Rasker JJ. Rheumatologists and their patients who seek alternative care; an agreement to disagree. British Journal of Rheumatology 1992; 31: 485±490. 7. Meininger JC. Sex dierences in factors associated with use of medical care and alternative illness behaviors. Social Sciences in Medicine 1986; 22(3): 285±292. 8. Edworthy SM. World Wide Web: Opportunities challenges and threats. Lupus 1999; 8: 596±605. 9. Eisenberg DM, Kessler RC, Foster C et al. Unconventional medicine in the United States. New England Journal of Medicine 1993; 328: 246±252. 10. MacLennan AH, Wilson DH & Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569±573. *11. Maier SF & Seligman MEP. Learned helplessness: theory and evidence. Journal of Experimental Psychology 1976; 105: 3±46. 12. Abramson LY, Seligman MEP & Teasdale JD. Learned helplessness in humans: critique and reformulation. Journal of Abnormal Psychology 1978; 87: 49±74. 13. Burckhardt CS & Bjelle A. Perceived control: a comparison of women with ®bromyalgia, rheumatoid arthritis, and systemic lupus erythematosus using a Swedish version of the Rheumatology Attitudes Index. Scandinavian Journal of Rheumatology 1996; 25(5): 300±306. *14. Bandura A. Social Foundations for Thought and Action: A Social Cognitive Theory. Englewood, NJ: PrenticeHall, 1986. 15. Taal E, Rasker JJ & Wiegman O. Patient education and self-management in the rheumatic diseases: a selfecacy approach [review]. Arthritis Care and Research 1996; 9(3): 229±238. 16. Goeppinger J, Arthur MW, Baglioni AJ et al. A reexamination of the eectiveness of self-care education for persons with arthritis. Arthritis and Rheumatism 1989; 32: 706±716. *17. Barlow JH, Turner AP & Wright CC. Long-term outcomes of an arthritis self-management programme. British Journal of Rheumatology 1998; 37(12): 1315±1319. 18. Superio-Cabuslay E, Ward MM & Lorig K. Patient education interventions in osteoarthritis and rheumatoid arthritis: a meta-analytic comparison with nonsteroidal anti-in¯ammatory drug treatment. Arthritis Care and Research 1996; 9: 292±301. 19. Lorig K, Lubeck D, Kraines RG et al. Outcomes of self-help education for patients with arthritis. Arthritis and Rheumatism 1985; 36: 680±685. 20. Lorig K & Holman H. Long-term outcomes of an arthritis self-management study: eects of reinforcement eorts. Social Science and Medicine 1989; 29: 221±224. 21. Belza BL. The impact of fatigue on exercise performance. Arthritis Care and Research 1994; 7: 176±180. 22. Burckhardt CS & Bjelle A. Education programmes for ®bromyalgia patients: description and evaluation. BallieÁre's Clinical Rheumatology 1994; 8: 935±955. *23. Yelin E & Callahan LF. The economic cost and social and psychological impact of musculoskeletal conditions. Arthritis and Rheumatism 1995; 38(10): 1351±1362. *24. Lorig K, Mazonson P & Holman H. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health bene®ts while reducing health care costs. Arthritis and Rheumatism 1993; 36: 439±446. 25. Rankin JA. Determinants of participation in an arthritis self management program (microform). Unpublished, University of Calgary Library, 1998.
714 S. Edworthy 26. Oppewal SR. Implementing a community-based innovation: organizational challenges and strategies. Family and Community Health 1992; 15: 70±79. 27. Holman HR & Lorig KR. Patient education: essential to good health care for patients with chronic arthritis [editorial, comment]. Arthritis and Rheumatism 1997; 40(8): 1371±1373. *28. Callahan LF & Pincus T. Education, self-care, and outcomes of rheumatic diseases: further challenges to the `biomedical model' paradigm [editorial, review]. Arthritis Care and Research 1997; 10(5): 283±288. 29. Weisbord SD, Soule JB & Kimmel PL. Poison on line ± acute renal failure caused by oil of wormwood purchased through the internet. New England Journal of Medicine 1997; 337(12): 825±827.