Patient and Public Involvement (PPI) in TANDEM: A Tailored intervention for ANxiety and DEpression Management in COPD
In the UK Patient and Public Involvement (PPI) in research is increasingly mandated in publically funded trials to make them more effective and credible (Hughes-Morley, 2017). The TANDEM randomised controlled trial will test whether a cognitive behavioural approach (CBA) intervention, delivered prior to Pulmonary Rehabilitation (PR), can help to reduce mild to moderate anxiety and/or depression in moderate to severe COPD and in turn optimise the benefits of PR. We sought PPI assistance during the set-up and pre-pilot phases of the trial.
We spoke to volunteer lung support groups and established PPI groups in two geographical areas; Greater London and Leicestershire. Meetings were informal and led by the TANDEM research team. In total the team spent 10.5 days on PPI activities.
Discussions with PPI advisors (n=57) focussed on the following key points. Terminology: Psychological therapy became “one to one discussions with a healthcare professional” and it was highlighted that the term “COPD” needed more explanation. Patient approach and recruitment: Documentation should be easy to read and use engaging language styles. PPI activities helped identify attractive pictures and relevant quotes for documents to be read by patients. Data collection: Piloting delivery of the outcome questionnaires helped identify the burden on patients associated with their completion. (The average time taken to complete the questionnaires was 35 minutes). Intervention design: Feedback informed the duration and frequency of the intervention and suggested locations to suit different patient needs.
Despite the time involved, PPI activities generated considerable public interest in TANDEM and informed the design and implementation of the trial. PPI activities have had a huge benefit to the TANDEM trial so far and so we will continue to work with our patient advisors until trial completion.