Rob Arbuckle, MSc, and Nalin Payakachat, BPharm MS PhD
2022 Measuring What Matters Symposium Co-Chairs

We were very proud to host the 2022 Measuring What Matters Symposium, which focused on Measuring What Matters in Child Health: Challenges, Developments and Opportunities. We are obviously biased, but we felt the symposium was a great success, featuring a number of fascinating sessions on measurement in child health from the knowledgeable speaking faculty, and great engagement from the ISOQOL community with approximately 100 registered attendees. Here is a quick summary of our 2022 symposium:

The first session included talks from Christopher Forest and Bryce Reeves, who set things up very well for the remainder of the sessions. They provided an overview of considering child health from a life pathways perspective and of measuring quality of life in children. Chris highlighted the importance of considering children in the context of the ‘4 Ds’s – ‘development,’ ‘dependence,’ ‘demographics’ and ‘different diseases’ and of considering the ‘developmental ecosystem.’ Bryce covered how the measurement approach can vary depending on the age range being focused on.

In Session 2, Christopher Forest provided an overview of a measurement framework and constructs for consideration. In this session and Session 1, Chris highlighted the importance of obtaining child reports wherever possible, but also the challenges sometimes associated with doing so, and how best to collect parent reports where that is not possible. Naomi Knoble then provided a valuable and informed regulatory perspective regarding child-reporting, observer-reporting and what standards the FDA expects for both. Nikki Ow then gave a fantastic overview of response shift and how this complex phenomenon should be considered in pediatric populations.

Day 1 finished with a session on the use of qualitative methods to explore meaningful change, presented by Hannah Staunton and Claire Burbridge. Hannah and Claire presented a number of case studies, which conveyed the challenges and possible solutions for discussing such a challenging concept with children.

In Day 2, Holger Muehlan and Aaron Kaat started Session 4 with advancement in measuring child health. Aaron provided a review on challenges in pediatric assessments and analytical methods that can be used in a small sample size. Holger presented innovative approaches to capture child-reported experience using technology such as electronically activate recorder (EAR).

In Session 5, three speakers talked about preference-based measures that are used to generate health utility scores for economic evaluation. Mick Tilford started the session with an overview of cost-effectiveness analysis, quality-adjusted life years (QALYs), and how health utility scores can be captured. Lisa Prosser showed the challenges of using direct valuation methods, such as standard gamble and time trade-off, to obtain health utility values in children from parents. Lisa also highlighted how COVID-19 impacted children and their family, and how researchers might consider expanding boundaries of valuation framework for child health. Wendy Ungar gave a great review on economic evaluation in children and the differences between different indirect measures (e.g., EQ-5D, CHU9D, HUI2 & 3). She pointed out that universality of QALY is eroded with multiple measures and could lead to inconsistent funding in decision making. This session also introduced family spillover effects that researchers should consider when conducting economic evaluation in children.

During the last session, Lotte Haverman and Maria Santana discussed how to engage patients and their families in pediatric clinical practice and PRO research. Maria brought her research partners to tell the audience how they contributed to develop/design ePROs in clinical care. Lotte gave insights on implementing ePROs in clinical care, discussing the use of KLIK in the Netherlands.

The symposium recordings are now available to view on-demand. If you missed it, but are interested in the topic or wrestling with a child health measurement challenge – it’s not too late to register and view them on the ISOQOL e-learning platform. If you were registered for the live symposium, you can access the recordings at no charge.

Again, huge thanks to all speakers for their dedication and time to make this 2022 MWM successful. We also thank the Child Health SIG members and past chairs for their contributions to the main contents of the symposium. Lastly, special thanks to ISOQOL staff members, especially Charise Maldonado, for all the technical support and organization that lead to the success of this year’s symposium.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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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.