Table of contents

Abstract                                          .
List of tables               

Acknowledgments   

1.          INTRODUCTION AND PROBLEM

Introduction            

Research Goals          

The Study Problems

Major Objectives

Significance . .

2.          REVIEW OF THE LITERATURE

Introduction

Rheumatoid Arthritis As Understood Today

Cause of the Disease                      

Depression and Its Arthritis Link

Sociological Theory .                    

Patient/Physician Differences in Evaluation

The Study Hypotheses                      

3.          DATA AND METHODOLOGICAL CONSIDERATIONS .

Introduction                                

The Field Work Site

Procedures                                  

Pain Measurements

Depression Measurements

Illness Severity Measurements

Structural Damage                      

Change in Rheumatoid Arthritis Condition.

Statistical Analysis .                      

4.          FINDINGS                                  

Patient Profiles                      

Measures of Association

Relationships Between Evaluation Groups

Patients Reporting LESS Pain Than Physician Reports                

Patient Evaluations the Same as Physician Evaluations            

Patients Reporting MORE Pain Than

                Physician Reports                    
            Intercorrelations of Evaluation Groups                              
            Hypotheses                                              

5. DISCUSSION AND CONCLUSIONS

            Introduction                                                                                                                                                                    
            Hypotheses                                 
            Limitations                                                                      
            Research Recommended                       

Implications •

APPENDIX:     THE PATIENT QUESTIONNAIRE ••..•....

SELECTED BIBLIOGRAPHY

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LIST OF TABLES

Table    Page

   1        Sample Characteristics 
   2        Health Characteristics of the Sample

   3        Rheumatoid Arthritis Severity
                 (Attending Physician Evaluations)  
   4        Evaluation Associations  

   5        Pain Evaluations    

   6        Means of Selected Variables Concerning Pain

Perception Differential Between Physician

                        and Patient Evaluations  

   7        Intercorrelations of Variables Between
                Evaluation Groups 

   8        Three-Way ANOVA: Evaluation Groups By
                Gender, Depression and RA Structure Damage

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ACKNOWLEDGMENTS

No thesis could ever be successfully completed without the gracious guidance of a thesis committee. lEn the case of this thesis, that committee provided more than normal service and concern in assisting with this work.

Of particular note is the dedication and patience of Robert Gray, PhD, the thesis committee chair. Throughout the arduous task of keeping this thesis within the scientific discipline, Dr. Gray has provided an example of true scholarship and devotion to the rigors of the discipline.

Extra concern and help was noted in the committee members consisting of John Collett, PhD, and Wen Kuo, PhD. Dr. Collett and Dr. Kuo made important contributions in the areas of narrowing the scope of the thesis and inspired the statistical methods used.

The completion of this thesis would not have been possible without the extra service of this excellent thesis committee.

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CHAPTER 1

INTRODUCTION AND PROBLEM

Introduction

One of the nation’s leading health problems, in terms of health costs, lost production, and patient pain, suffering, and crippling, is Rheumatoid Arthritis (RA).

The peak onset of Rheumatoid Arthritis is considered to be the fifth decade of life, RA is prevalent world-wide (Wolfe, 1984), and the disease lasts the lifetime of the patient. Pain and crippling of the patient are serious concomitant problems usually resulting from RA.

Approximately 18.9 million Americans suffer from some form of limitation in activity as a result of arthritis, according to the Bureau of Census (Arthritis Foundation, 1982). RA often leads to restrictions on even normal home activities, including meal preparation, dressing, and personal hygiene.

RA pain is both physiological and emotional, with part of the pain being anticipatory pain; understanding that the pain is not entirely predictable nor controllable but probably lasting a lifetime (Mooney,l983; Weiner, 1975). Pain can lead to patient isolation (Gray, 1982).

Rheumatoid Arthritis is often concomitant with significant levels of depression and disability (Irwin, 1988; Witter, 1987). Even with the variety of medical treatments available, patients suffering from RA often report continued pain, distress, and mobility limitations affecting everyday activities.

The actual course of the disease does not closely correlate, however, with the behavior of patients. In the process of perception and interpretation of illness symptoms, individual patient representations of the illness vary greatly (Gonder-Frederick & Cox, 1989). These subjective interpretations appear to lead to differing patient outcomes, even controlling for disease severity.

Coping styles of RA patients have shown some patients using a maladaptive catastrophizing strategy characterized by negative self-statements and negative thoughts about the future. This strategy alters pain perception and further contributes to depressive outcomes (Keefe, Brown, Wallston, & Caldwell, 1989).

Inability to accomplish even normal activities may result from the personal subjective determination of health rather than as an objective measure of the destruction or deformity of this crippling illness (Watson & Pennebaker, 1989).

The RA patient definition of health status, even when not closely correlating with the objective findings of the physician, should be considered by the physician in treatment. Understanding of these patient definitions “...may lead to effective behavioral interventions as adjuncts to the traditional medical care of RA patients” (Smith, Peck, Milano, & Ward, 1988).

Research Goals

Of special import in the present study is the problem of patient pain which nearly always accompanies arthritis. What is lacking in the literature is a clarification of physician and patient conception of patient pain.

Buttressing the importance of pursuing this issue is a growing literature that patient pain is significantly influenced by psychological and social factors. This being the case, it appears sound to assume that there is a good possibility that physician and patient evaluation of the patient’s pain will differ significantly in many instances. Pursuant to this end, the following statements specify the questions addressed in the present study. 

Research Questions: 

1)     Do physicians and their RA patients usually

agree or disagree when evaluating patients’ pain?

2)     If they do not agree, what are factors that 

influence this difference?

3)     Do physicians diagnose their perception of RA

patient pain on the basis of observable measures of

disease severity, such as physical structural damage, more so than do their patients?

4)     If so, what psychosocial factors may be altering RA patients’ perception?

            5)     Does patient depression have any effect on the perceived pain of

             RA patients?

These questions are refrained into hypotheses, following the review of the literature. 

Major Objectives

This research was specifically conducted for the pur­pose of identifying variables which may influence the RA patients’ perception of pain; distorting that perception when compared to the attending physician evaluations. Since such differential definitions are found to be present, it may be possible for health professionals to design interventions for the purpose of reducing perceived pain and functional restrictions on RA sufferers.

Important issues relating to patient prognosis and such specifics as compliance to medical treatments may also be furthered by understanding the distortions in the patient pain evaluations (Gray, Johnson, Samuelson & Ward, 1982) 

Significance

RA health problems, in terms of health costs, lost production, and patient pain, suffering, and crippling, affect approximately 18.9 million Americans, according to the Bureau of Census (Arthritis Foundation, 1982). RA patients often experience restrictions on normal daily activities (Pollock, 1985).

Lost productivity may be lessened by understanding variables which impact the patients’ subjective representation of their illness. Alterations in patient subjectivity may be the result of psychosocial variables, one of which may be patient depression. If this is so, treatment of the depression may be helpful with regards to increasing patient life satisfaction, improving medical regimes, and, perhaps, patient productivity.

In order to address the study questions, frequencies with central tendency, measures of association, and multivariate (three way ANOVA) analyses were performed. The remainder of this study is organized along traditional lines. Chapter 2 is a review of the literature on RA, a review of the theoretical orientation, and a statement of the research hypotheses; Chapter 3 is a discussion of methodology used in the study; Chapter 4 is an analysis and interpretation of the data; and Chapter 5 is a discussion of findings and conclusion.

CHAPTER 2

REVIEW OF THE LITERATURE

Introduction

This literature review will present a summary of the more salient studies documenting the relationship between arthritis and psychosocial factors. Included will be study results relating to (1) RA etiology, (2) psychosocial factors that appear to be related to patients’ perceptions of their illness, and (3) sociology theory upon which this study is based.

Rheumatoid Arthritis as Understood Today

The definition of Rheumatoid Arthritis is:

... a systemic connective tissue disorder of unknown cause in which symptoms and inflammatory changes predominate in articular and related structures with frequent protein manifestations and extra—articular features. (Lambert & Lambert, p. 551)

RA symptoms start out as generalized fatigue, stiffness (especially noted in the morning), and soreness which begins in time to localize in a specific joint or joints. Often the localized manifestations are swelling, pain, tenderness, and warmth. The inflammation of the joint can lead to visible distortions. The joints most often affected are the knees and small joints of the hands, wrists, and feet. Unlike other forms of arthritis, such as osteoarthritis, the joint swelling is not hard, but soft and boggy.

RA is chronic, affects women from two to three times more often than men, and has remission times as well as exacerbation periods. In severe cases, a patient may be confined to bed or wheelchair (Lambert & Lambert, 1985).

The course of the illness, though usually progressive, is uncertain. Remission may occur in as high as 25% of patients, and may occur as long as 25 years. Normally, however, about half of the rheumatoid arthritics cannot perform normal occupational or household activities after 10-15 years of having the disease (Wolfe, 1984).

 Cause of the Disease

At this time the causes of the RA disease are unknown, but current theories involve the body’s immune system. Research also shows a relationship between social factors and autoimmune functioning. Some such factors are thought to indirectly influence the immune response via their effects on psychological stress which appears to affect the immune system (Kaplan, 1983).

Other factors, though still related to psychological stress, are thought to have independent effects upon the immune functioning. Such factors could include dietary patterns, sleep deprivation, smoking, alcohol use, some prescription and non-prescription drugs, and illicit drug abuse (Kaplan, Johnson, Bailey, & Simon, 1987). Medically, the “necessary factor” in development of

RA may be that of genetic make-up (since people with certain genetic “markers” are found more often than others to develop certain types of arthritis). However, not everyone with these markers develop RA (Brewerton, 1988).

Possible “sufficient factors,” such as patient depression, may influence the development and, perhaps, course of the disease:

Subsequent studies have found that... (3) whereas most stressful conditions suppress immune response, stressful conditions of moderate intensity can enhance cellular immune response; and (4) extremely small quantities of interleukin-i (IL-i) acting on the brain.., bring about suppression of cellular immune responses very rapidly and for a prolonged period of time (Weiss, Sundar, Becker & Cierpial, 1989, p. 43).

The “working over—time” immune response, in effect, does damage where its intent was to prevent damage. Healthy tissue is destroyed causing inflammation and destruction of bone tissues. The results can be measured in pain, reduced joint mobility, and even in joint deformity.

Psychoneuroimmunoiogy proposes that loneliness and stress can impair the normal immune system and thereby create a vulnerability to disease (Johnson & Sarason, 1978).

Feelings of hopelessness, helplessness, and a lack of control over stressful events engender greater neuroimmune disturbances than are present in individuals who can exert some measure of control over the stressful situation. (Restak, 1989, p. 25).

Sensitivity of the immune system to stress is not simply fortuitous but is an indirect consequence of the regulatory reciprocal influences that exist between the immune system and the central nervous system (Dantzer and Kelly, 1989, p. 1995).

Major life-style changes may result from the pain and crippling effects of RA. These may include alterations in patient self esteem, roles, and, especially where joint deformity is obvious, in body image. Coping with such changes often mirrors those of behaviors in the grieving process (Ignatavicius, 1987).

Research findings in this area have demonstrated that psychosocial states and social experiences have an impact on physical and mental functioning which can be demonstrated by ‘hard scientific findings’ by disclosing their singular and cumulative affects on the immune system.. .For example, Heisel: ‘The unhealthier the personality, the weaker the response of the immune cells... [burn patient study] There were significant negative correlations between immune response (IR), and psychological distress, namely that as depressive symptoms increased, immune function declined (Gray et al., 1990, p. 2).