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How Can Participant Experience of Quality-of-Life Research Be Improved in Cancer Research: Views of the Patient and Public Involvement Representatives from the STAMPEDE2 Prostate Cancer Trial - Beyond the Abstract

Quality of life (QOL) is an essential patient-centered outcome that is critical to assess in cancer clinical trials. QOL studies must be carefully planned to ensure the data are credible and given the prominence they deserve. In prostate cancer, where long-term survival continues to improve, questionnaires often fail to identify important issues for many patients, and studies may struggle with declining engagement from participants over time.

Furthermore, the lack of standardisation in methods of conducting QOL studies, with differences in how to measure, analyse, and report data make it difficult to understand how QOL compares between different treatments and over time.

To improve QOL research in prostate cancer, participant input is imperative. Researchers must ensure studies are working “with” participants rather than making paternalistic assumptions about how to best conduct this research.

We spoke to the patient and public involvement (PPI) representatives from the STAMPEDE1&2 trial, designed and conducted by the MRC Clinical Trials Unit at UCL, and asked for their personal recommendations on how clinical trials could design QOL studies to best enhance recruitment, engagement and improve participant experience.

Recommendations:

  • Design and development
    • Design QOL studies with input from PPI representatives
  • Recruitment
    • Access to QOL tools in different languages
    • Access to QOL tools in different formats (eg, paper, e-mail, app)
    • Flexibility for participants to complete QOL tools when convenient and comfortable for them (within a specified time period to meet trial requirements)
    • Expert advice on how to support participation by groups with specific disabilities (eg, individuals who are visually impaired or have learning difficulties)
  • • Engagement
    • Ensure that individuals understand the purpose of QOL research
    • Give participants the opportunity to discuss QOL studies with others with shared characteristics
    • Use QOL tools that participants feel are addressing their concerns; if possible, look for tools that are adaptive and can be personalised to the participant
    • Provide the opportunity for QOL results to be fed back to the clinical team
    • Integration of QOL tools into electronic patient record systems
  • • Research Community
    • Develop a consensus on standards for QOL methodology, analysis, and reporting in clinical research
Whilst these suggestions are wide-ranging and aspirational, we hope they provide inspiration for those planning QOL studies. Ultimately, improving QOL studies will increase our understanding of the impact of prostate cancer, and guide the development of treatments and interventions designed to optimise cancer care outcomes.

Written by: Minal Padden-Modi1 & Hannah Rush2

  1. Institute of Cancer Research and Royal Marsden Hospital NHS Foundation Trust, London, UK; MRC Clinical Trials Unit, Institute of Clinical Trials and Methodology, University College London, London, UK.
  2. MRC Clinical Trials Unit, Institute of Clinical Trials and Methodology, University College London, London, UK.

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