Measuren1ent of disease activity in rheun1atoid arthritis (RA) has been standardised by the developlnent of core sets of variables, constructed by professional experts in rheumatology. However, there is evidence that priorities for treatment of RA differ between health professionals and patients. This thesis describes the exploration of the ilnportant outcOlnes of 'feeling well' and 'n1aintaining or returning to a nonnallife', the developlnent of a patient-generated core set of patients' priority outcon1es, and the relationship between theln. The literature review suggests that the patient perspective is not represented in the existing core sets of outcomes (Chapter 1). The broader literature suggests that contextual factors and individuals' adaptation to chronic illness may affect patients' prioritisation of treatment outcOlnes and their perceptions of well-being (Chapters 2 and 3). A Inixed methods, pragmatic Grounded Theory approach was taken to addressing these issues. Three methods were employed iteratively: in-depth interviews, nominal/focus groups and a postal survey (Chapter 4). The interviews elicited important treatment outcomes and produced thematic frameworks of well-being, and normality in RA, and a model of their interaction (Chapter 5). These informed the nominal/focus groups, which ranked the outcomes, provided an understanding of the factors influencing prioritisation and constructed numerical rating scales (NRS) to measure the din1ensions of well-being (Chapter 6) for use in the survey. The survey produced the patient core set of the eight most important patient outcomes: pain, activities of daily living, joint dan1age, mobility, life enjoyment, independence, fatigue and valued activities. The survey also provided evidence of the accuracy of the n10del derived from the interview data where global well-being was determine by physical, psychological, adaptational and social variables (Chapter 7). The findings have implications for theory, policy, and research methods. First, evidence is given for a greater emphasis on the impact of continued physical impact in theoretical models. Second, criteria for eligibility for anti-TN F therapy is questioned and psychological assessn1ent is advised. Third, the integration of qualitative and quantitative methods is shown to be successful, but has highlighted methodological challenges (Chapter 8). Future work includes testing the proposed patient-generated core set, in comparison to the existing professionally developed core sets.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:522572 |
| Date | January 2009 |
| Creators | Sanderson, Tessa |
| Publisher | University of the West of England, Bristol |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
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