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Improving the assessment and management of symptoms and concerns in heart failure  : A  longitudinal study of the feasibility of a patient-reported outcome measure in clinical practice 

Student thesis: Doctoral ThesisDoctor of Philosophy

Background: Patients with advanced heart failure have unmet needs which are poorly identified and addressed. This study (i) explores the feasibility, acceptability and potential mechanisms of action of a palliative-specific patient-reported outcome measure (PROM)–based intervention and (ii) examines the methods to undertake this study to inform a future clinical trial.
Methods: This study used a mixed methods approach. Patients with advanced heart failure and their caregivers were recruited to participate in a pre-post uncontrolled longitudinal follow-up study at nurse-led heart failure disease management clinics in two hospital study sites. Patients completed telephone administered quantitative questionnaires at baseline and at three time points post intervention (1-2 days, 1-2 weeks and 4-6 weeks respectively). Caregivers completed postal baseline assessments and a follow-up assessment 4-6 weeks post intervention completion. Descriptive statistics were used to examine both intervention feasibility and the feasibility of the quantitative follow-up assessments used to evaluate the intervention. Intervention compliance and adherence, together with follow-up assessments response rates were examined. Qualitative semi-structured interviews with patients and nurses explored the acceptability and potential mechanisms of action of this intervention. Semi-structured interviews were analysed using framework approach and interpreted in the context of the longitudinal data.
Results: Conversion to consent was 46.9% (372 screened, 81 approached, 38 recruited). Recruitment of patients was challenging due to intra-site subjectivity of the New York Heart Association functional classification system. Twenty five (66%) patient participants completed the IPOS; 6% of IPOS questionnaire items were missing (due to non-response). Over two thirds (65.6%) of these missing items related to just three patients. No single item was consistently missing; appetite was the most frequently missing item (1.4%). Twenty-three (92%) patients who completed the IPOS completed all follow-up assessments with no missing data. The a priori feasibility objectives were achieved. In the semi-structured interviews, patients and nurses reported the intervention and follow-up assessments were feasible and acceptable. The potential mechanism of the intervention involved: the identification of patient participants’ unmet needs; a holistic assessment of their symptoms and concerns; and patient empowerment. Patient participants stated they felt empowered as they described themselves as being more knowledgable and aware of their symptoms and concerns, whilst being better able to articulate these in the clinical consultation.
They described these skills as helping them feel more enabled to take a more active role in clinical discussions about their heart failure.
Conclusion: This research study tested this intervention and methods among patients with advanced heart failure for the first time. Both the methods used and the intervention were found to be feasible and acceptable. This research provides valuable insights into the challenges in conducting PROM research in this population. This work also gives novel insights into the mechanism of action of PROMs, particularly in palliative care.
Original languageEnglish
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Award date2018

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