Psychosocial Aspects of Rheumatic Diseases Introduction by izr18082


									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,
 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

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

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-

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-

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
                                                    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

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,
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.
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   Z), 5-11.                                                                     Correspondence to: Erik Taal, MA, Department of Psychology,
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  as predictors of psychological  adjustment     to rheumatoid                     Netherlands.

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