How to meaningfully discuss meaningful change with children: Qualitative approaches

The FDA is increasingly interested in patient perspectives of what level of change is important to support traditional quantitative methods of evaluating meaningful change and deriving thresholds. This has led to the emergent of qualitative methodologies to explore changes experienced by patients and the meaning of changes. In pediatric populations this throws up additional challenges: who is the best reporter? How to discuss in a way that children can understand the topic?

The third session of the 2022 Measuring What Matters Symposium will provide case-studies of different qualitative methodologies for capturing and contextualizing changes experienced within clinical trials. Learnings will be shared and illustrative examples presented.

Session Speakers:

Hannah Staunton, MSc

Roche Products Ltd

Hannah Staunton is a Senior Principal Outcomes Research Scientist at Roche Products Ltd in the Patient Centered Outcomes Research (PCOR) team in Product Development. Hannah has been working in the field of patient-centered outcomes for the last 8 years, specialising in the development, validation and interpretation of patient, caregiver, clinician and performance outcomes. Hannah has more recently worked on novel wearable devices, an area of research that is evolving and presents new opportunities to understand the patient experience. As part of her role at Roche, Hannah is responsible for overseeing PCOR activities in the Neurodevelopment and Psychiatry therapeutic areas.

Claire Burbridge, MSc

Clinical Outcomes Solutions

Claire is Executive Director, Clinical Outcomes Assessments (COA) at Clinical Outcomes Solutions (COS) and has been working in COA research for twenty years. Most recently in consultancy, and previously in the pharmaceutical industry, supporting compounds at all stages of the product lifecycle across multiple therapeutic areas; leading projects designed to capture the patient voice and explore the real meaning and value of treatments. Claire is a Chartered Psychologist and an Associate Fellow of the British Psychological Society and the BPS Division of Health Psychology. She has an MSc in Health Psychology from University College London.

Register today to attend Measuring What Matters, a symposium focused on patient-reported outcome measures (PROMs) in child health. Scheduled for 18-19 July 2022, this virtual event will consist of session presentations and live Q&As with the speakers. Recordings of the symposium will be archived for future access for registrants unable to attend the live presentations in July. 

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.