Acceptability of patient reported outcome measures (PROMs) in a cystic fibrosis data registry

Abstract

IntroductionImprovements in the treatment of cystic fibrosis (CF) have resulted in longer survival and an increased focus on optimising daily functioning with the condition. Patient-reported outcome measures (PROMs) are valuable tools in evaluating the health-related quality of life of persons with chronic diseases. PROMs may be incorporated into clinical registries to assess and provide feedback regarding the health-related quality of life of the affected population. This study uses qualitative methodology to describe the views of patients with CF, caregivers and clinicians on the usefulness and practicality of incorporating a PROM in the Australian Cystic Fibrosis Data Registry (ACFDR).MethodsWe conducted semistructured interviews with a convenience sample of patients with CF (n=5), caregivers (n=7) and clinicians (n=13) on their opinions on incorporating the Cystic Fibrosis Questionnaire-Revised or the Cystic Fibrosis Quality of Life Questionnaire into the ACFDR. We analysed data into topics and subtopics using conventional content analysis.ResultsParticipants believed that PROMs could generate useful aggregate health-related quality of life data to support better understanding of the experiences of the modern CF population. Participants emphasised that implementation must be supported by processes to feedback data to patients and clinicians. Most participants preferred electronic PROMs administration for easy integration into existing systems and the potential to support feedback.ConclusionPatients, caregivers and clinicians in this study generally supported the usefulness and practicality of PROM implementation in the ACFDR.

Surgeon Engagement with Patient-Reported Measures in Australian and Aotearoa New Zealand Bariatric Practices

“…Survey questions were adapted from the survey developed by Morton et al [11] and refined collaboratively within the ANZ BSR research team based on a review of data points collected by similar Clinical Quality Registry studies in both Australia and Aotearoa New Zealand, and internationally [17][18][19][20], as well as a preliminary framework for the inclusion of PRMs in Registries [21] and expert knowledge within the ANZ BSR. The survey consisted of two parts with 23 items overall.…”

Critical disease burdens of Australian adults with cystic fibrosis: Results from an online survey

“…16 Furthermore, PROMs provide a clear picture of the burden of disease, particularly in older people living with CF, whereby the landscape of the disease is changing. 17 This study reports results from a case-control questionnaire aiming to investigate and analyze the various self-reported phenotypic manifestations and to characterize the disease burden for the CF population.…”

“…In an era of CF modulators and genomic research, PROMs are critical to appraising these new therapies in addition to supporting people living with CF who are not eligible for modulator therapy 16 . Furthermore, PROMs provide a clear picture of the burden of disease, particularly in older people living with CF, whereby the landscape of the disease is changing 17 …”

“… 16 Furthermore, PROMs provide a clear picture of the burden of disease, particularly in older people living with CF, whereby the landscape of the disease is changing. 17 …”