As part of our ongoing seminar series, the Centre of Research Excellence in Severe Asthma hosted Prof. Janelle Yorke, for a webinar on “Patient-Reported Outcomes In Severe Asthma: Fit For Purpose?” on 21 March, 2018.
Patient reported outcome measures (PROMs) assess the impact of disease from a patient perspective. PROMs are increasingly used to assess the effects of disease and treatment. However, PROMs are rarely used as primary outcomes in clinical trials.
A range of health-related quality of life PROMs have been used in asthma studies. However, no PROMs have been developed specifically for severe asthma. Existing PROMs fail to assess factors that are unique to severe asthma. These include frequent hospitalisations and frequent use of oral corticosteroids (OCS).
PROM development is a lengthy and rigorous process. Questionnaire development involves initial item generation, refinement, reduction, validation and re-testing. Careful consideration must be made when framing questions and developing answer options. The intended PROM use (e.g. clinical utility vs. research) also shapes development.
Prof. Yorke presents preliminary findings on the development of a severe asthma PROM. This project is a collaboration with Prof. Vanessa McDonald. Preliminary data from patient interviews about disease exacerbations highlights a range of domains relevant to patient experience. Further, findings highlight the importance of terminology with patients predominantly using the term “attack”.
Prof. Janelle Yorke is the founding Chair of Christie Patient Centred Research (CPCR) and Deputy-lead of the Supportive Palliative Care (SuPaC) group at University of Manchester.
A primary objective of her work has been to improve symptom experience and quality of life for people living with a long-term illness, through the development of measurement tools, better understanding of the illness experience and palliative care needs of patients and their families, and the testing of multifaceted non-pharmacological interventions.
She has particular expertise in the development and validation of Patient Reported Outcome (and Experience) Measures (PROMS/PREMS) using advanced psychometric techniques, including Rasch analysis and is collaborating with Prof Vanessa McDonald to develop a severe asthma-specific quality of life tool.