Findings from a roundtable discussion with Pakistani stakeholders on measuring and valuing health and health-related quality of life for children and adolescents

Abstract

Background: Children and adolescents represent a distinct population with specific healthcare needs, requiring appropriate consideration in health-related quality of life (HRQoL) measurements and economic evaluations. In Pakistan, the absence of local value sets for children and adolescent health states and the limited application of health technology assessment (HTA) pose challenges to informed equitable decision-making and resource allocation. Valuing children and adolescents' health involves methodological and ethical complexities, particularly in determining whose preferences should be considered and how trade-offs between length and quality of life should be addressed. This study aimed to explore the views of key national stakeholders on these valuation issues to inform the development of a localized EQ-5D-Y-3 L value set for Pakistan.

Methods: A total of 12 stakeholders were identified via the investigators' network from different cities in Pakistan and diverse backgrounds. An in-person 3.5-hour meeting was held in Islamabad to discuss a range of topics including (a) the need for a Pakistani value set for the EQ-5D-Y-3 L, (b) willingness to pay more for quality-adjusted life-year (QALY) gains for children versus adults, (c) source of health preferences (adults vs. children), (d) potential ethical concerns and, (e) other challenges in a youth valuation to obtain deeper insights for understanding of the health valuation. The session was recorded, transcribed, and summarized.

Results: Stakeholders confirmed that QALYs have not yet been widely used in Pakistan's healthcare system, although HRQoL instruments like EQ-5D-3 L and EQ-5D-5 L are increasingly applied by researchers for evidence generation. Stakeholders agreed that adolescents aged 11 and above can complete valuation tasks and should be involved in data collection. Moreover, 33% of stakeholders (4 out of 12) specifically recommended using adult preferences initially due to budgetary and technical constraints, while 66% (8 out of 12) did not explicitly oppose using adult preferences initially, they emphasized the importance of involving adolescents in the process either concurrently or in subsequent phases. Participants acknowledged that societal willingness to pay more per QALY for children varied, with some viewing it as a strategic investment. Ethical concerns about life-year trade-offs for children were not seen as major barriers in the local context. Parents or caregivers were deemed the most appropriate proxy respondents when self-reporting was not possible. Challenges identified included limited awareness of QALYs among policymakers, scarce local utility data, technical capacity gaps, and constrained health budgets.

Conclusion: Pakistani stakeholders encouraged the use of health valuation data such as the EQ-5D-Y-3 L measures in decision-making and provided useful perspectives to youth valuation with a local context.

Keywords: Child health valuation; EQ-5D-Y; Health state preference; Qualitative; Stakeholder engagement.