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Developing a new measure of health-related quality of life for individuals with atrial fibrillation: a mixed method study

Horan, S (2019). Developing a new measure of health-related quality of life for individuals with atrial fibrillation: a mixed method study. (Unpublished Doctoral thesis, City, University of London)


Background: Atrial fibrillation (AF) is the most common cardiac arrhythmia, affecting around 2% of the population. AF Symptoms, increased risk of stroke, along with anxiety about illness course, potential complications and adverse treatments effects can have a clear detrimental effect on patients’ Health Related Quality of Life (HRQoL). A literature review revealed inadequacies in the methods used to develop extant HRQoL measures, most of which have had limited patient involvement in their development which potentially limits validity.

Aim: The aim of the PhD research project was to develop a novel and AF-specific HRQoL measure with greater emphasis on patient involvement throughout development; and to conduct preliminary testing of the instrument’s psychometric characteristics.

Methods: The development of an AF-specific HRQoL measure involved several interrelated study phases. The first item generation stage used a series of focus groups (k=8) made up from patients with paroxysmal (n=7), persistent (n=9) and asymptomatic (n=5) AF; relatives of those with AF (n=3) and healthcare professionals (n=7). Item selection and assessment of face and content validity was assessed by a series of reviews by health care professionals (n=6), patients (n=2), academics (n=3) and patient organisation leads (n=1); individual interviews with patients with AF (n=15) and healthy controls (n=3). Transcripts from the focus group, interviews, and panel meetings were thematically analysed to derive AF PROM domains. Items were generated to reflect these domains. Preliminary validation of AF PROM was based on survey completion by participants with paroxysmal (n=46), persistent (n=22) and asymptomatic (n=9) AF and healthy controls (n=29) recruited from Barts Health NHS Trust and the AF Association website. Completion of AF PROMs, a generic QoL measure (WHOQOL-BREF) and an AF symptom questionnaire allowed the factor structure of AF PROM to be evaluated using Principle Component Analysis (PCA), internal consistency was evaluated using Cronbach’s alpha, and convergent and discriminant validity using Pearson’s correlation coefficient.

Findings: Item generation and selection phases identified five domains of HRQoL affected by AF, which formed a 28-item scale. From the five themes identified in the qualitative phase, PCA identified five different underlying components. Internal consistency of individual components ranged from α = .779 (component five) to α = .942 (component one). Initial results support the convergent and discriminant validity of AF PROM (AF PROM and generic QoL measure [r= .624; p< 0.00]) (AF PROM and symptom measure [r=-.734; p< 0.00]).
Conclusion: The AF PROM scale appears to be a psychometrically sound instrument of HRQoL. Following these preliminary validation stages, further work in a larger population is recommended and planned prior to wider use

Publication Type: Thesis (Doctoral)
Subjects: R Medicine > RT Nursing
Departments: School of Health & Psychological Sciences > Nursing
School of Health & Psychological Sciences > School of Health & Psychological Sciences Doctoral Theses
Doctoral Theses
[img] Text - Accepted Version
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