Patient Education and Counseling, 20 (1993) 55-61 55 Elsevier Scientific Publishers Ireland Ltd. Psychosocial Aspects of Rheumatic Diseases: Introduction Erik Taal, MA, Erwin R. Seydel, PhD, Johannes J. Rasker, MD and Oene Wiegman, PhD Department of Psychology, University of Twente, P.O. Box 217, 7SOOAE Enschede (Netherlands) Introduction and Cosh, 1987). The activity of the disease can vary greatly, sometimes even daily. RA can strike people of all ages but mostly This special issue of Patient Education and becomes manifest between the ages of 20 and Counseling deals with psychosocial and 50. Women are more affected than men; the patient-educational aspects of rheumatic overall ratio is 3:l (Anderson et al., 1985). It diseases, comprising more than 100 chronic is estimated that the prevalence of RA in most diseases with complaints involving the joints white populations approaches 1% among and/or connective tissues. The most prevalent adults aged 18 and older (Schumacher, 1988). forms of rheumatic diseases are osteoarthritis, rheumatoid arthritis (RA), ankylosing spon- Osteoarthritis is characterized by progres- dylitis and libromyalgia. The causes of many sive loss of articular cartilage and secondary rheumatic conditions are unknown, and these reactions in bone. Important clinical features diseases cannot be prevented or completely are joint pain, stiffness at the start of move- cured. However, due to the proportional in- ments and bony enlargement with limitation crease of the ageing population, the number of motion. Prevalence of osteoarthritis in- of patients with rheumatic diseases is growing creases with age; the disease is almost univer- rapidly (Fielts and Yelin, 1989). sal in people 65 years or older (Schumacher, 1988). Disease Characteristics Ankylosing spondylitis is a chronic, pro- gressive disease predominantly affecting the Rheumatoid arthritis is a chronic, disabling spine. Major symptoms are back pain and disease characterized by inflammation of stiffness of the spine with reduced mobility. joints and joint tissues. This inflammation The disease usually starts before 40 years of may be remitting, but if continued often re- age and is predominantly seen in men sults in progressive joint destruction, defor- (Schumacher, 1988). mity and ultimately in various degrees of incapacitation (Rasker and Cosh, 1987). Car- Fibromyalgia is a nonarticular disease dinal symptoms are persistent pain, stiffness characterized by widespread musculoskeletal and swelling in joints. More general com- pain, stiffness, disturbed sleep and fatigue. plaints are morning stiffness and fatigue, There is a lack of objective findings. The sometimes due to anaemia. The course of RA disease occurs predominantly (SO-90%) in is chronic and unpredictable. Patients experi- women usually in the age group between 20 ence periods of exacerbation and remission of and 50 years (Schumacher, 1988; Yunus et al., disease activity (Schumacher, 1988; Rasker 1988). 0738-3991/93/$06.00 0 1993 Elsevier Scientific Publishers Ireland Ltd. Printed and Published in Ireland 56 Psychosocial Aspects of Rheumatic Diseases 1989; Pincus et al., 1986). Questions about physical symptoms may be accurate to assess Rheumatic diseases have a great impact on emotional distress among psychiatric patients the quality of life. They affect not only physi- but in arthritis patients these questions mea- cal functioning but also psychological and so- sure symptoms that reflect their actual physi- cial aspects (Anderson et al., 1985). cal condition. Rheumatic diseases have on the one hand be- havioral, psychological and social conse- (1) The role of psychosocial factors in the quences, but on the other hand behavioral, onset and course of rheumatic disease psychological and social variables may be There has been much research into the role determinants of disease development and of of psychosocial factors in the onset and patients’ ability to adapt to their condition. course of rheumatic diseases, especially RA. Already in the start of the century it was sug- Research on psychosocial aspects of rheu- gested that certain personality typologies matic diseases focuses on four major areas: (1) predisposed to get rheumatoid arthritis the role of behavioral and psychosocial fac- (Jones, 1909). Studies into this so called tors in the onset and course of rheumatic specificity hypothesis have led to conflicting disease; (2) the psychosocial and behavioral results. More recent research suggests that the consequences of rheumatic disease; (3) the observed psychological characteristics in RA mediating influence of psychosocial factors patients may be reactions to the physical on patients’ ability to adjust to the conse- disease process rather than causal factors quences of their disease; and (4) the develop- (Anderson et al., 1985; Lerman, 1987). ment of psychosocial treatment strategies, e.g. models of patient education. In the scientific literature, however, indica- tions can be found that stressful life- Next to these four major areas social scien- experiences modulate the onset and course of tists, and other researchers, are also involved RA (Anderson et al., 1987; Lerman, 1987). in the development of methods to assess phys- The mechanisms through which stress exerts ical and psychosocial aspects of the health its influence on the disease process are still status of arthritis patients. To investigate the unclear. The effects of stress on the onset and role of physical, behavioral, psychological course of RA seem to be determined for a and social variables in rheumatic diseases and great deal by the type of strategies people use to assess the effects of medical and psychoso- to cope with stressful experiences (Wegener, cial treatment programs reliable and validated 1991). Recent developments indicate that measurement instruments are needed. In the stress influences the immune system (Bradley, last decade several instruments have been 1989b; Wegener, 1991). Zautra et al. (1989) developed to assess the physical, found indications that stress may lead to neg- psychological and social aspects of the health ative reactions in the immune system of RA status of arthritis patients (Anderson et al., patients. However, this study showed no con- 1985). An important methodological problem sistent relationships between stress and in the assessment of the psychological impact changes in disease activity. Future research in of rheumatic disease is that many instruments psychoneuroimmunology may lead to a better like for instance the MMPI or the BDI were understanding of the complex relationships originally validated with psychiatric patients between stress, immune system functioning (Bradley, 1989b). Depression scales may and the onset and course of RA. overestimate the prevalence and severity of depression among persons with arthritis due (2) Psychosocial and behavioral consequences to the endorsement of items such as “I felt of rheumatic disease everything I did was an effort” or “I am about For the rheumatic patient, it is probably as able to work as I ever was” (Blalock et al., less significant that stress moderates the onset 51 or course of his or her disease than it is that nature of RA and the varying disease activity a rheumatic disease with an often unpredict- may cause patients to view their disease as un- able and painful course has a stressful impact controllable. This often leads to low self- on the life of the patients. The rheumatic eff’ cacy expectations about needed causes of disease will have physical as well as behav- action to cope with the consequences of the ioral and psychosocial implications for the disease or to more generalized feelings of patient and his or her family. The quality of learned helplessness; that is the experience of life of rheumatic patients can be characterized s having no control over one’ life, in general, by functional disability (e.g. restrictions in and across different situations. Social support mobility and daily activities), pain, loss of in- from e.g. family and friends can also play a dependence, psychological problems like de- significant role in the adaptation to the pression and anxiety, changes in family disease. Significant relationships have been functioning and social activities, work found between social support and health disability and financial problems (Anderson status in arthritis patients (Affleck et al., 1988; et al., 1985; Cornelissen et al., 1988). Also the Weinberger et al., 1990; Goodenow et al., adherence to medication and other therapies 1990). can be problematic to the patient (Bradley, A substantial problem is the often low rate 1989a). of adherence to treatment regimens which is greatly influenced by behavioral and psycho- (3) Mediating psychosocial factors social factors. Determining factors are the There is accumulating evidence that the be- doctor-patient relationship, knowledge about havioral and psychosocial impact is not the nature of the regimen, expectations about directly related to the severity of the rheuma- the efficacy of the treatment, skills and self- tic disease, but that there is considerable indi- efficacy expectations (Bradley, 1989a; Stewart vidual variation in adjustment to the disease. Agras, 1989). Furthermore, social support Psychosocial factors can have a mediating in- can motivate patients to adhere to treatment fluence on the patients’ ability to adjust to the recommendations. consequences of their disease (Bradley, 1989b; Wegener, 1991). McFarlane and Brooks (4) Psychosocial interventions (1988) found that psychological factors, like Because of the moderating role of behav- denial of emotional distress or depression, ioral and psychosocial factors in rheumatic predicted more of the variance in disability, diseases, and the limited possibilities of medi- over a 3-year period, than disease activity in cal interventions, there has been an increased 30 RA patients. Several studies have interest in psychosocial interventions like pa- demonstrated relationships between the use of tient education or psychotherapy from behav- certain coping strategies and adjustment ioral scientists and health professionals such (Bradley, 1989b). RA patients’ use of negative as physicians, nurses, and others. They want coping strategies such as catastrophizing, patients to become more informed about their escapist fantasies and engaging in passive pain conditions, to improve adherence to thera- management strategies is associated with poor peutic regimens, learn self-management psychological status and high levels of func- strategies for effectively coping with the tional impairment (Brown et al., 1989; Keefe demands of the disease, and to prevent et al., 1989; Revenson and Felton, 1989). disability. Psychosocial interventions should Various studies have indicated that cognitive not be limited to the transfer of knowledge factors like self-efficacy or learned helpless- but should be aimed at the teaching of self- ness are related to functional and management skills that are useful for an ade- psychological impairment (Lorig et al., 1989; quate handling of the consequences of the Nicassio et al., 1985). The unpredictable disease. When studying the effects of psycho- 58 social interventions one should not only mea- Contents of this Special Issue sure changes in knowledge but also changes in behavior and physical and psychosocial On June 6-9 1990 the third International health status. In recent years various reviews Symposium for Health Professionals in have been published about the effectiveness of Rheumatology was held in Enschede, the psychosocial interventions (Lorig et al., 1987; Netherlands. Some of the major themes at the McCracken, 1991; Mullen et al., 1987; Kir- symposium were psychosocial aspects of rheu- wan, 1990). These reviews indicate that psy- matic diseases, patient education and asses- chosocial interventions can be effective in sment methods. The articles in this special changing knowledge, behaviors, and physical issue of Patient Education and Counseling are and psychosocial health status, Furthermore, mainly based on presentations at the sym- it is concluded that future studies should in- posium. Without pretending to be exhaustive vestigate relevant factors that can facilitate or they give an impression of the topics dealt mediate beneficial effects, thereby clarifying with at the symposium. The contributions can the causal relation between intervention and be subdivided into three sections. The first outcome (Lorig et al., 1987; McCracken, section of the issue contains articles concern- 1991; Kirwan, 1990). This conclusion points ing the various physical, behavioral and psy- at the importance of thorough analysis of the chosocial problems of patients with rheumatic health problems and determinants of these disease as well as the role of behavioral and problems before designing an intervention psychosocial factors in the process of adjust- (Green and Kreuter, 1991). This means that ment to the demands of the disease. The ar- there has to be a careful planning of the inter- ticles in this part may provide leads for the vention (Green and Kreuter, 1991; Kok, development of psychosocial interventions. 1992). The effectiveness of psychosocial in- The second section contains articles on terventions depends heavily on the quality of methods of assessing the physical and psycho- planning. That means a careful analysis of the social aspects of health status. When assessing problem, the behavior, the determinants, the the problems of rheumatic patients or intervention and implementation and of the evaluating the efficacy of medical or psycho- strength of the relationship between those as- social treatments it is necessary to have pects. A thorough problem analysis is a sine reliable and valid means to assess health qua non. Few physicians would think of status. The final section of the issue contains prescribing medication without first diagnos- articles that discuss the development and eval- ing the probable cause of the illness. Never- uation of psychosocial intervention programs. theless, the same physicians, when confronted In the first section Taal et al. describe a with the problem of behavior change, fre- Dutch study on patients with rheumatoid quently do not realize that the determinants arthritis. The health problems of RA patients of behavior change are multiple and complex. are assessed, the problems these patients expe- Instead, when confronted with patient non- rience in adhering to health recommendations adherence, they tend to assume that the pa- and the relationships of these problems with tient either does not understand the instruc- self-efficacy expectations and social support. tions or is not motivated to comply. In any Implications for the development of a patient case they are convinced that they have done education program are discussed. their work, namely giving patient education and information. They apparently do not Samuelsson et al. discuss the problems of realize that they have to give patient educa- rheumatic patients in the early stages of treat- tion in a systematic way and that knowledge ment and their needs and expectations regar- and motivation are only two of many vari- ding psychosocial care. Some results of their ables that can influence behaviour. Swedish studies are presented on the psycho- 59 social needs and expectations of rheumatic matic condition but that also may reflect de- patients before their first visit to a doctor at pression. Pincus and Callahan give a the outpatient specialist clinics. Implications summary of evidence for this so called of the studies are discussed for practical clini- ‘criterion contamination’ in responses of RA cal work and psychosocial care at an early patients on the MMPI, BDI and CES-D from stage of the disease. their own studies and studies from other re- search groups. They conclude that depression Eberhard et al. report a Swedish longitudi- appears to be more common in patients with nal study on the interaction of RA and RA versus the general population, and that psychological factors over two years in a depression scales may be used in RA patients, group of 89 patients with newly established but results must be interpreted with caution, disease. A newly developed psychological ad- taking into account criterion contamination. justment test is applied and validated. Eberhard et al. conclude from their study that Bakker et al. give an introduction on health symptoms of psychological distress are in gen- related utility measurement in rheumatology. eral not very pronounced, fairly stable over Commonly used instruments to assess health time, and not related to disease severity. The related quality of life, as discussed by Jacobs patients’ degree of adjustment changes slowly et al. in this issue, usualiy assess various phys- or not at all during the two years. ical and psychosocial aspects of health. Utility measures are single measures of the value or Krol et al. give an introduction on the con- preference that respondents attach to their cepts of social network and social support and overall health status. According to Bakker et describe the possible effects of social support al. utility measures can be very useful as a on the quality of life among patients with RA. measure of effect in evaluating treatments. Subsequently they review studies on social They state that utility measures have the ad- support and rheumatic disease published in vantage that they summarize both negative the period from 1986 to 1991. They conclude and positive effects of an intervention into that patients can experience positive effects one single value. In their article Bakker et al. form social support, but that further research discuss the various approaches to utility mea- remains necessary to gain insight in the surement and describe the Maastricht Utility beneficial elements and mechanisms of social Measurement Questionnaire as an example of support. Finally they stress the importance of utility measurement. Finally they discuss the gaining more insight into the personality concept of Quality Adjusted Life Years structure of patients as a possible intervening (QALYs). A QALY is a single comprehensive factor. outcome measure that includes effects in In the second section on the assessment of terms of both quality of life and survival. health status Jacobs et al. give an overview of In the third section on the development and existing instruments to assess physical and evaluation of interventions Barlow et al. psychosocial dimensions of health status. Pro- discuss self-help groups for patients with perties of frequently used instruments are ankylosing spondylitis as a means of promot- described and their validity, reliability and ing exercise treatment. They present a com- sensitivity to detect change are discussed. parative study of 111 members and 50 Pincus and Callahan discuss the use of de- non-members of such groups along psychoso- pression scales in patients with rheumatoid cial dimensions including health locus of con- arthritis. Scales to measure depression like the trol, social support and health behavior. MMPI, BDI or CES-D include statements Although no comparable measurements are concerning somatic symptoms like fatigue or available for non-members, the data on a pain that are common in patients with a rheu- subset of 20 self-help group members suggest 60 that the adoption of a regular exercise pro- psychological factors related to etiology, effects, and treat- gram can have beneficial effects on physical ment. Psychological Bulletin. 98, 358-387. mobility. Self-help group members are Bandura, A. (1986). Socialfoundations of thought and action: A social cognitive theory. Englewood: Prentice-Hall. distinguished from non-members by a com- Blalock, S.J., DeVelhs, R.F., Brown, G.K. and Wallston, K.A. bination of factors including a.low reliance on (1989). Validity of the center for epidemiological studies de- powerful others health locus of control be- pression scale in arthritis populations. Arthritis and liefs, greater satisfaction with available sup- Rheumatism, 32, 991-997. Bradley, L.A. (1989a). Adherence with Treatment Regimens port, and increased frequency of exercise. Among Adult Rheumatoid Arthritis Patients: Current Basler describes a German cognitive- Status and Future Directions. Arthritis Care and Research, 2, 33-39. behavioral treatment programme in a group Bradley, L.A. (1989b). Psychosocial factors and disease out- setting format for chronic pain patients. In a comes in rheumatoid arthritis: old problems, new solutions, meta-analysis, treatment effects in different and a future agenda. Arthritis and Rheumatism, 32, diagnostic groups (low back pain, tension 1611-1614. headache, rheumatoid arthritis, ankylosing Brown, G.K., Nicassio, P.M. and Wallston, K.A. (1989). Pain coping strategies and depression in rheumatoid arthritis. spondylitis) are compared. Pain reduction is Journal of Consulting and Clinical Psychology, 57, 652-657. greatest in low back pain and least in ankylos- Cornelissen, P.G.J., Rasker, J.J. and Valkenburg H.A. (1988). ing spondylitis. The effectiveness of the treat- The arthritis sufferer and the community: a comparison of ment in RA patients and AS patients seems to arthritis sufferers in rural and urban areas. Annals of the pertain more to emotional stabilization than Rheumatic Diseases, 47, 150- 156. Goodenow, C., Reisine, ST. and Grady, K.E. (1990). Quality to pain reduction. of Social Support and Associated Social and Psychological In the last article of this special issue Taal Functioning in Women With Rheumatoid Arthritis. Health Psychology, 9, 266-284. et al. discuss the development and evaluation Green, L.W. and Kreuter, M.W. (1991). Healthpromotionplan- of a Dutch group education program for pa- ning, an educational and environmental approach. Mountain tients with rheumatoid arthritis. This program View, California: Mayfield. is based on social learning theory (Bandura, Jones, R.L. (1909). Arthritis deformans. New York: William 1986) and the Arthritis Self-Management Wood. Fielts, W. and Yeiin, E. (1989). The economic impact of the Course (ASMC) developed in the USA by rheumatic diseases in the United States. Arthritis and Lorig (Lorig et al., 1985; Lorig et al., 1989). Rheumatism, 33, 750-755. The ASMC has been shown to be successful Keefe, F.J., Brown, G.K., Wallston, K.A. and Caldwell, D.S. and leads to increased knowledge, perfor- (1989). Coping with arthritis pain: Catastrophizing as a mance of taught behaviors and less pain. The maladaptive strategy. Pain, 37, 51-56. Kirwan, J.R. (1990). Patient education in rheumatology. Cur- goal of the program of Taal et al. is the rent Opinion in Rheumatology, 2, 336-339. strengthening of self-efficacy, outcome expec- Kok, G. (1992). Quality of planning as a decisive determinant tations and self-management behaviors which of health education effectiveness. Hygie, International Jour- may lead to better health status. Evaluation of nal of Health Education, II (4). 5-8. the program showed beneficial effects on Lerman, C.E. (1987). Rheumatoid arthritis: Psychological fac- tors in the etiology, course and treatment. Clinical Psychol- knowledge, self-efficacy, outcome expecta- ogy Review, 7, 413-425. tions, behavior, functional disability and joint Lorig, K., Chastain, R., Ung, E., Shoor, S. and Holman, H.R. tenderness. (1989). Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis and Rheumatism. 32, 37-44. References Lorig, K., Konkol, L. and Gonzalez, V. (1987). 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Clinical symptoms, tions among patients with rheumatoid arthritis. Health Psy- radiological signs, treatment, mortality and prognostic sig- chology, 8, I-14. nificance of early features. Clinical Rheumatology, 6 (Suppl. Z), 5-11. Correspondence to: Erik Taal, MA, Department of Psychology, Revenson, T.A. and Felton, B.J. (1989). Disability and coping University of Twente, P.O. Box 217, 7500 AE Ens&de, as predictors of psychological adjustment to rheumatoid Netherlands.
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