EVALUATING JOINT PROTECTION EDUCATION FOR PEOPLE WITH RHEUMATOID ARTHRITIS. by Alison Hammond MSc. Thesis submitted to the University of Nottingham for the degree of Doctor of Philosophy. May 1994. IMAGING SERVICES NORTH Boston Spa, Wetherby West Yorkshire, LS23 7BQ www.bl.uk BEST COpy AVAILABLE. VARIABLE PRINT QUALITY IMAGING SERVICES NORTH Boston Spa, Wetherby West Yorkshire, LS23 7BQ www.bl.uk BEST COpy AVAILABLE. TEXT IN ORIGINAL IS CLOSE TO THE EDGE OF THE PAGE CONTENTS. ABSTRACT ACKNOWLEDGEMENTS 1. INTRODUCTION. 1 1.1. Foreword 1 1.2. Rheumatoid Arthritis 2 1.2.1. Epidemiology 3 1.2.2. Aetiology and Pathology 3 1.2.3. Clinical Features 4 1.2.4. The Rheumatoid Hand 6 1.2.5. Prognosis 8 1.2.6. Management 9 1.2.7. The Role of Occupational Therapy 10 1.3. Joint Protection 10 1.3.1. Components of Joint Protection 11 1.3.2. Biomechanical basis of Joint Protection 12 1.3.3. Review of Joint Protection efficacy 14 1.3.4. Potential psychological effects of JP 19 1.3.5. Summary 21 1.4. Patient Adherence 21 1.4.1. Adherence to JP behaviours 22 1.4.2. Factors affecting adherence 23 1.4.3. Health behaviour models 25 1.4.4. The Health Belief Model and Self-Efficacy theory 29 1.5. Patient Education 31 1.5.1. Patient education in arthritis management 32 1.5.2. Patient education approaches 33 1.5.3. Joint Protection education 3S 1. 5.4. Review of JP education studies 37 1.6. Aims of the Study 40 2. DEVELOPMENT Of THE ASSESSMENT PROCEDURES. 42 2.1. Introduction 42 2.2. Development of the Joint Protection Behaviour Assessment 43 2.2.1- Introduction 43 2.2.2. Procedures 44 2.2.2.l. Identifying target subjects 44 2.2.2.2. Selecting an appropriate sampling strategy 45 2.2.2.3. Establishing target behaviours 45 2.2.2.4. Selecting appropriate conditions for assessment 50 2.2.2.5. Definition and scoring of target behaviours 51 2.2.2.6. Checking validity 52 2.2.2.6.1. Face validity 52 2.2.2.6.2. Construct validity by extreme groups 52 2.2.2.6.3. Establishing content validity 54 2.2.2.7. Checking reliability 58 2.2.2.7.1. Test-retest reliability 58 2.2.2.7.2. Inter-observer agreement 63 2.2.3. Conclusion 64 2.3. Development of the Interview schedule 65 2.3.1. Introduction 65 2.3.2. Procedures 65 2.3.2.1. Question construction 66 2.3.2.2. Interview sequence 72 2.3.2.3. Face validity 74 2.3.2.4. Test-retest reliability 74 2.3.3. Conclusion 94 2.4. Development of the Joint Protection Knowledge Assessment 95 2.4.l. Introduction 95 2.4.2. Procedures 96 2.4.2.1. Initial development 96 2.4.2.2. Face validity 97 2.4.2.3. Inter-rater agreement and content validity studies 97 2.4.2.4. Pilot studies with RA subjects 103 2.4.2.5. Test-retest reliability study 104 2.4.3. Conclusion 106 2.5. Disease measures 107 2.S.!' Introduction 107 2.5.2. Disease measures selected 108 2.5.3. Other variables 111 2.6. Assessment Procedure 111 3. EVALUATION OF TRADITIONAL JP EDUCATION 112 3.1. Introduction 112 3.2. Method 113 3.2.1. Null hypotheses 113 3.2.2. Education programme development 113 3.2.3. Joint Protection education sessions 117 3.2.4. Trial design 118 3.2.5. Pilot study 120 3.2.6. Subject selection 121 3.2.7. Assessment procedures 123 3.2.S. Statistical analysis 123 3.3. Results 124 3.3.1. Subject recruitment 124 3.3.2. Subject sample 124 3.3.3. Disease measures 125 3.3.3.1. Physical measures 125 3.3.3.2. Psychological measures 127 3.3.4. Outcome of traditional JP education 129 3.3.4.1. Hand JP behaviour 129 3.3.4.2. Frequency of JP behaviours 129 3.3.4.3. Correlation between Hand JP behaviour, disease and demographic measures 131 3.3.4.4. Attitude towards, observed and self-reported Hand JP behaviour 132 3.3.4.5. Self-reported Hand JP methods 133 3.3.4.6. Use of Hand JP methods - subjects' comments 133 3.3.4.7. Self-reported hand joint stress reduction strategies 135 3.3.4.8. Self-reported difficulty in changing behaviour 136 3.3.4.9. Reasons for and methods of changing 137 3.3.4.10. Comparison of high and low JPBA scorers 138 3.3.4.11. Attitudes towards JP education 138 3.3.5. Outcome of education - effect of disease knowledge 138 3.3.6. Outcome of education - effect on JP knowledge 139 3.3.7. Relationship between JPKA and JPBA scores 141 3.3.8. Attitudes towards and self-reported use of JP behaviours 142 3.4. Discussion 144 3.4.1. Trial design 144 3.4.2. Subject sample 145 3.4.3. Effect on attitudes of the JP education programme 146 3.4.3.1. Benefit from attending the programme 146 3.4.3.2. Belief in benefit of JP behaviours 146 3.4.3.3. Attitudes towards the disease 147 3.4.4. Effect on knowledge of the education programme 147 3.4.4.1. Disease knowledge 147 3.4.4.2. Joint Protection knowledge 149 3.4.5. Joint Protection behaviours 150 3.4.5.1. Respect for pain 150 3.4.5.2. Changing work methods 151 3.4.5.3. Balance of rest and work 151 3.4.5.4. Rest 152 3.4.5.5. Exercise 152 3.4.5.6. Use of splints 153 3.4.5.7. Use of technical aids 154 3.4.6. Hand JP behaviour 154 3.4.7. Possible reasons for lack of change 157 3.5. Conclusion 161 3.6. Recommendations 162 3.6.1. Traditional JP education 162 3.6.2. Achieving behavioural change 163 4. DEVELOPMENT OF A COGNITIVE-BEHAVIOURAL JP PROGRAtflE 166 4.1. To increase perceived severity, susceptibility and perceived benefits 166 4.2. To aid learning and recall 168 4.3. To increase psychological adaptation 171 4.3.1. Self-efficacy 171 4.3.1.1. Strategies to increase self-efficacy 173 4.3.2. Perceived control 176 4.3.2.1. Strategies to increase perceived control 178 4.3.3. Learned helplessness 179 4.3.3.1. Strategies to avoid learned helplessness 180 4.3.4. Coping 180 4.3.4.1. Strategies to increase coping skills and flex ibi lity 182 4.4. To increase motor skills 183 4.5. To enable adoption of new habits and routines 191 4.6. Cognitive-behavioural JP programme outline 200 5. EVALUATION OF THE COGNITIVE-BEHAVIOURAL JP EDUCATION PROGRAMME 203 5.1. Introduction 203 5.2. Method 203 5.2.1. Null hypothesis 203 5.2.2. Trial planning 203 5.2.3. Subject selection 207 5.2.4. Pilot study 209 2.5. Statistical analysis 210 5.3. Results 211 5.3.1. JPBA inter-rater reliability study 211 5.3.2. Subject recruitment 211 5.3.3. Subject sample 212 5.3.4. Disease measures 213 5.3.4.1. Physical measures 213 5.3.4.2. Psychological measures 216 5.3.5. Outcome of cognitive-behavioural JP education 219 5.3.5.1. Hours of education received 219 5.3.5.2. Hand JP behaviour 219 5.3.5.3. Intention to treat analysis 220 5.3.5.4. Frequency of JP behaviours 221 5.3.5.5. Relationship between Hand JP behaviour, disease and demographic measures 222 5.3.5.6. Factors predicting Hand JP behaviour changes post-education 223 5.3.5.7. Factors associated with Hand JP changes post- education 224 5.3.5.8. Comparison of Changers and Non-changers results 225 5.3.5.9. Attitudes towards, observed and self-reported Hand JP behaviour 226 5.3.5.10. Changers and Non-changers self-reported measures 228 5.3.5.11. Self-reported joint stress reduction strategies 228 5.3.5.12. Reasons for and methods of changing 229 5.3.6. Outcome of education - effect on disease knowledge 230 5.3.7. Outcome of education - effect on JP knowledge 231 5.3.8. Attitudes towards and self-reported use of other JP behaviours 232 5.3.9. Comparison of completers and non-completers resu lts 234 5.3.10. Attitudes towards JP education 236 5.3.11. JP Programme costs 237 5.4. Discussion 238 5.4.1. Trial design 238 5.4.2. Outcome of the cognitive-behavioural JP programme 238 5.4.2.1. Attitudes towards and attendance at the programme 238 5.4.2.2. Effect on knowledge 239 5.4.2.3. Attitude and psychological measures 239 5.4.2.4. JP behaviours 241 5.4.2.5. Effect on Hand JP 242 5.5. CONCLUSION 248 6. TRADITIONAL VERSUS COGNITIVE-BEHAVIOURAL JP EDUCATION PROGRAMMES 250 7. RECOMMENDATION FOR FUTURE RESEARCH AND IMPLICATIONS FOR PRACTICE 258 7.1. Future research 258