Abstract
Background
Service-user partnerships in research exist in mental health, but there have been few advances in other disciplines, apart from cancer.
Objectives
To develop a patient-generated expectancy measure for new treatments in rheumatoid arthritis (RA), using a participatory method.
Method
Stage 1: three repeated focus groups and two expert panels with patients with RA conducted by a patient researcher to generate items for the draft questionnaire. Stage 2: feasibility study of draft scale with consecutive outpatient attendees.
Results
Patients identified 21 dimensions of new treatment expectations, grouped into (i) physical, (ii) psycho-social and (iii) expectations relating to the impact of treatment. This resulted in a draft instrument assessed in a feasibility study.
Discussion and Conclusion
The participatory research method was useful in involving patients actively in research and to produce collaboratively a feasible, valid and acceptable measure in RA. The scale will be included in a longitudinal observational study, with newly diagnosed patients, to assess (i) whether the new scale demonstrates sensitivity to change for expectations
Service-user partnerships in research exist in mental health, but there have been few advances in other disciplines, apart from cancer.
Objectives
To develop a patient-generated expectancy measure for new treatments in rheumatoid arthritis (RA), using a participatory method.
Method
Stage 1: three repeated focus groups and two expert panels with patients with RA conducted by a patient researcher to generate items for the draft questionnaire. Stage 2: feasibility study of draft scale with consecutive outpatient attendees.
Results
Patients identified 21 dimensions of new treatment expectations, grouped into (i) physical, (ii) psycho-social and (iii) expectations relating to the impact of treatment. This resulted in a draft instrument assessed in a feasibility study.
Discussion and Conclusion
The participatory research method was useful in involving patients actively in research and to produce collaboratively a feasible, valid and acceptable measure in RA. The scale will be included in a longitudinal observational study, with newly diagnosed patients, to assess (i) whether the new scale demonstrates sensitivity to change for expectations
| Original language | English |
|---|---|
| Pages (from-to) | 995-1008 |
| Number of pages | 14 |
| Journal | Health expectations : an international journal of public participation in health care and health policy |
| Volume | 18 |
| Issue number | 5 |
| Early online date | Apr 2013 |
| DOIs | |
| Publication status | Published - 1 Oct 2015 |
Keywords
- Acknowledged-BRC
- Acknowledged-BRC-13/14
