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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

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Cummings, EA (2008) 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. PhD thesis, University of Tasmania.

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Abstract

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.

Item Type: Thesis (PhD)
Keywords: Lungs, Patient self-monitoring, Medical informatics
Copyright Holders: The Author
Copyright Information:

Copyright 2008 the author - The University is continuing to endeavour to trace the copyright owner(s) and in the meantime this item has been reproduced here in good faith. We would be pleased to hear from the copyright owner(s).

Additional Information:

Available for library use only and copying in accordance with the Copyright Act 1968, as amended. Thesis (PhD)--University of Tasmania, 2009. Includes bibliographical references. Ch. 1. Introduction -- Ch. 2. The Pathways Home for Respiratory Ilness Project -- Ch. 3. Literature review -- Ch. 4. Methodology -- Ch. 5. Phase 1 Analysis -- Ch. 6. Triad interview analysis -- Ch. 7. Individual case study analysis -- Ch. 8. Interpretation and discussion -- Ch. 9. Conclusions & future work

Date Deposited: 09 Dec 2014 00:13
Last Modified: 16 May 2016 23:09
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