An investigation of the influence of an online patient diary on the health outcomes and experiences of people with chronic obstructive pulmonary disease (COPD) participating in a mentored self-management clinical controlled trial

This research thesis investigates the influence of an online patient diary on the health outcomes and experiences of people with chronic obstructive pulmonary disease (COPD) participating in a mentored self-management clinical controlled trial. The trial primarily aimed to assess clinical outcomes resulting from changes in participants' self-efficacy for self-management supported by telephone based mentoring and daily symptom self-monitoring. Although most evaluations of chronic disease self-management (CDSM) interventions report some benefit, the variety of methodologies and assessment procedures used make comparisons of efficacy difficult and highlight the complexity and uncertainty associated with supporting CDSM. Linked to many of these approaches are also claims about the positive role of information and communication technologies (ICTs), however numerous questions remain over the nature and reliability of the measures used and their relationships to patient outcomes and experiences at individual and cohort levels. At a practical level, there remains limited knowledge on how patients experience CDSM interventions and what factors frame and/or constrain their involvement and ability to derive benefit. There is also a need for more sophisticated approaches to understand and evaluate the influence of ICTs on patients engaged in CDSM interventions. Approaches that can meaningfully explore the gap between assessments of ICT benefit for a cohort of patients versus those for an individual patient. The methodology used in this research adopted a subjective ontology and employed an interpretive epistemology. The research strategy involved a three phase approach. Phase 1 examined quantitative data from the controlled trial to establish the effect of the overall intervention on clinical and other outcome measures and to identify and validate data on participants selected for qualitative follow-up. Phase 2 conducted semi-structured interviews to form twelve participant cases (six patients who had used the online patient diary and six who had not). For each case, interviews were conducted with the participant, their primary mentor and the trial research assistant to form a 'care triad' (thirty-six interviews in total). Phase 3 combined data from phases one and two for each of the twelve cases to explore in detail the inter-relationships amongst factors (including the online patient diary) influencing patient's health outcomes and experiences over the duration of the trial. Phase 1 analysis involved descriptive statistical analysis of the effect of the trial on a number of clinical and other outcome measures at 3 levels: intervention [N=55] versus control group [N=51]; intervention group (ICT adopters [N=20] versus ICT non-adopters [N=35]); and, amongst participants selected for interview (ICT adopters [N=6] and ICT non-adopters [N=6]). Phase 2 qualitative analysis coded all thirty six interview transcripts and drawing on the principles of grounded theory generated a series of core categories identifying concepts and themes across the twelve cases including those relating to patients: understanding of the trial; impact of their social environment; the severity of their disease; and, the impact of a computer and online patient diary. Phase 3 constructed in-depth case studies of the twelve individual participants from the quantitative and qualitative data collected in the previous phases. These case studies provided a means for exploring the relationships between individual differences and the impact of computers and online patient diaries. Results from phase 1 included that the clinical controlled trial had no discernible effect upon the clinical outcomes at any of the three levels. However, there was a positive effect at all levels on the quality of life outcome scores. Phase 1 also highlighted that based on these quantitative measures alone, the use of the online patient diary appeared to decrease the efficacy of the intervention. Results from phase 2 however included the insight that the use of the online patient diary for some participants actually increased their understanding of their symptoms and the effects of external factors . upon their health and ability to cope. These apparently conflicting results highlight the benefits of utilising both quantitative and qualitative analysis. Phase 2 also provided some insight into the inter-relationships amongst factors including how the computer and online patient diary influenced individual patient's outcomes and experiences. Further insights were also generated by combining data from phases 1 and 2. In this regard, results from phase 3 included the significant insight that for some participants key benefits arise from access and use of the computer rather than the online patient diary per se. These benefits include changes in individual participants' ability to communicate more widely and easily with family, peers and clinicians, their social status within their families and social groups, a reduction in perceived levels of isolation and increased confidence about themselves and their capabilities to manage their illness and its effects. This research thesis makes contributions to knowledge at a number of levels. At the substantive level, by providing a detailed investigation of the influence of ICTs on patients within a clinical controlled trial this research has enhanced understanding of how patients experience CDSM interventions and what factors frame and/or constrain their involvement and ability to derive benefit. At the methodological level, this thesis has presented an approach that by drawing on and combining quantitative and qualitative data has been able to meaningfully explore the gap between assessments of ICT benefit for a cohort of patients versus those for an individual patient. At the theoretical level, this research thesis has been able to highlight that current clinical and technical evaluation paradigms have their limitations where patients are encouraged to be active participants. This in-turn enables clearer reflection on what is meant by 'individualised care' and 'empowered patients' in the era of eHealth.