Malik Madeeha, Hussain Azhar, Purba Fredrick Dermawan, Gu Ning Yan
Cyntax Health Projects, Contract Research Organization (CRO) & Corporate Firm, Islamabad, Pakistan.
Pak-Austria Fachhochschule, Institute of Applied Sciences and Technology, Haripur, Pakistan.
Health Qual Life Outcomes. 2025 Jul 1;23(1):65. doi: 10.1186/s12955-025-02397-5.
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.
背景:儿童和青少年是具有特定医疗保健需求的独特人群,在与健康相关的生活质量(HRQoL)测量和经济评估中需要得到适当考虑。在巴基斯坦,缺乏针对儿童和青少年健康状态的本地价值集以及卫生技术评估(HTA)的有限应用,给明智的公平决策和资源分配带来了挑战。重视儿童和青少年的健康涉及方法和伦理的复杂性,特别是在确定应考虑谁的偏好以及应如何处理生活长度和质量之间的权衡方面。本研究旨在探讨国家关键利益相关者对这些估值问题的看法,以为巴基斯坦制定本地化的EQ-5D-Y-3L价值集提供参考。 方法:通过研究人员的网络从巴基斯坦不同城市和不同背景中确定了总共12名利益相关者。在伊斯兰堡举行了一次为期3.5小时的面对面会议,讨论了一系列主题,包括(a)对EQ-5D-Y-3L的巴基斯坦价值集的需求,(b)相对于成年人,为儿童的质量调整生命年(QALY)增益支付更多费用的意愿,(c)健康偏好的来源(成年人与儿童),(d)潜在的伦理问题,以及(e)青年估值中的其他挑战,以获得对健康估值理解的更深入见解。会议进行了记录、转录和总结。 结果:利益相关者证实,QALY在巴基斯坦的医疗保健系统中尚未得到广泛应用,尽管像EQ-5D-3L和EQ-5D-5L这样的HRQoL工具越来越多地被研究人员用于生成证据。利益相关者一致认为,11岁及以上的青少年可以完成估值任务,并且应该参与数据收集。此外,33%的利益相关者(12人中有4人)由于预算和技术限制,特别建议最初使用成人偏好,而66%(12人中有8人)没有明确反对最初使用成人偏好,他们强调在过程中同时或在后续阶段让青少年参与的重要性。参与者承认,社会为儿童每QALY支付更多费用的意愿各不相同,有些人将其视为一项战略投资。在当地背景下,对儿童生命年权衡的伦理问题并未被视为主要障碍。当无法进行自我报告时,父母或照顾者被认为是最合适的替代受访者。确定出的挑战包括政策制定者对QALY的认识有限、当地效用数据稀缺、技术能力差距以及卫生预算受限。 结论:巴基斯坦的利益相关者鼓励在决策中使用诸如EQ-5D-Y-3L测量等健康估值数据,并为具有当地背景的青年估值提供了有用的观点。
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