Introduction
Significant heterogeneity exists in the outcomes and instruments used in clinical practice to evaluate lung cancer rehabilitation. This study aimed to develop a lung cancer rehabilitation clinical core outcome set and establish consensus on accompanying outcome measurement instruments.
Methods
An international modified Delphi consensus study was carried out following recommended guidelines, involving patients and carers, healthcare professionals and researchers. Two survey rounds, in each study phase, rated the importance of a range of outcomes to include in the core outcome set (Phase One) and measurement instruments for each core outcome (Phase Two). Online consensus meetings ratified survey findings through discussion and voting.
Results
Phase One: 27 outcomes were included in round one (113 participants), with an additional two outcomes in round two (95 participants, 84% retention). Outcomes reaching consensus as “critical to include” were breathlessness, activities of daily living, physical function, health-related quality of life (HRQoL), emotional and mental wellbeing, and pain. Phase Two: 21 instruments were included (round one, 64 participants), with eight added in round two (60 participants (one patient), 94% retention). The 6-min walk test and European Organisation for Research and Treatment of Cancer core questionnaire reached consensus to measure physical function and HRQoL, respectively. No further consensus was achieved on instruments following online consensus meetings (10 participants).
Conclusion
Consensus was achieved regarding six core outcomes to be used to standardise the evaluation of lung cancer rehabilitation in clinical practice. Measurement instruments were agreed upon for use when evaluating physical function and HRQoL.
The aim of this study is to develop a core (minimum) set of clinically relevant, patient-centred lung cancer rehabilitation outcomes for use in clinical practice and research which are important to all stakeholders, patients and caregivers, healthcare professionals and clinician researchers.
ContributorsLara Edbrooke, Thomas W. Davies, Catherine L. Granger, Emma Halloran, Tom John, Bronwen Connolly. Linda Denehy. the Lung Cancer Rehabilitation Collaborative
Disease Category: Cancer
Disease Name: Lung cancer
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Rehabilitation
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Policy makers
- Researchers
- COS for practice
- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Systematic review
We have conducted an overview of systematic reviews of lung cancer rehabilitation and interviewed people with lung cancer and their caregivers to generate a list of outcomes for inclusion in the 'what to measure' process. These will be grouped into domains according to the International Classification of Functioning framework. Healthcare professionals, consumers and researchers will be invited to be involved in a Delphi survey (minimum of 2 rounds), followed by an online meeting to achieve consensus. To determine 'how to measure' we will search the literature for outcome measure instruments where consensus has already been reached. Where no consensus has been reached, available instruments with demonstrated psychometric properties and feasibility will be identified and the survey and consensus meeting process, involving the 3 stakeholder groups, will be repeated.