Accounting for Bereavement in NICE Pediatric Health Technology Appraisals: A Review of the Inclusion of Caregiver Health Utilities After the Death of a Child
Author(s)
Geoffroy Coteur, PhD1, Lindsay Dearden, MSc2.
1iPATH Solutions, Wemmel, Belgium, 2Wave Market Access Solutions Ltd, London, United Kingdom.
1iPATH Solutions, Wemmel, Belgium, 2Wave Market Access Solutions Ltd, London, United Kingdom.
OBJECTIVES: Increased mortality in severe pediatric diseases is a critical aspect of the burden but, accounting for the caregiver QoL after the death of a child in NICE (highly specialized) technology appraisals (TA) presents methodological challenges. Objective is to provide a recent review on how caregiver QoL and health utilities for bereaved caregivers have been accounted for in pediatric TAs by NICE.
METHODS: Published guidance for pediatric NICE TAs were retrieved and manually searched for the words “carer” or “caregiver”. Information on methods used to account for these utilities was extracted.
RESULTS: Out of the 46 pediatric TAs in scope, the use of caregiver utilities has been increasing (29 (63%)). Two main methods were used: the “subtractive” method, where decrements in caregiver’s health utility are subtracted from the patient utilities or QALY gains; and the “additive” method, where absolute values or increments in caregiver’s health utility are added. Out of 29 TAs, 7 and 22 used the additive and subtractive method respectively. Ten TAs discussed the methodological challenges of accounting for bereaved caregiver QoL: the subtractive method is associated with the “caregiver QALY trap” issue and the additive method is associated with the “simultaneous death assumption” issue, which may under- or over-estimate the technology’s cost-effectiveness, respectively. Adaptations to each of the two methods have been proposed in some TAs. However, the subtractive method was often preferred by EAGs, and the additive method was largely disregarded based on precedents or due to lack of research. The final decision-making by the Committees was either based on the subtractive method or, more commonly, on a qualitative consideration of caregiver QoL and bereavement only.
CONCLUSIONS: Despite more application, methodological challenges associated with accounting for bereaved caregiver QoL remain that often prevented this important aspect being quantitatively included in NICE decision-making in pediatric TAs.
METHODS: Published guidance for pediatric NICE TAs were retrieved and manually searched for the words “carer” or “caregiver”. Information on methods used to account for these utilities was extracted.
RESULTS: Out of the 46 pediatric TAs in scope, the use of caregiver utilities has been increasing (29 (63%)). Two main methods were used: the “subtractive” method, where decrements in caregiver’s health utility are subtracted from the patient utilities or QALY gains; and the “additive” method, where absolute values or increments in caregiver’s health utility are added. Out of 29 TAs, 7 and 22 used the additive and subtractive method respectively. Ten TAs discussed the methodological challenges of accounting for bereaved caregiver QoL: the subtractive method is associated with the “caregiver QALY trap” issue and the additive method is associated with the “simultaneous death assumption” issue, which may under- or over-estimate the technology’s cost-effectiveness, respectively. Adaptations to each of the two methods have been proposed in some TAs. However, the subtractive method was often preferred by EAGs, and the additive method was largely disregarded based on precedents or due to lack of research. The final decision-making by the Committees was either based on the subtractive method or, more commonly, on a qualitative consideration of caregiver QoL and bereavement only.
CONCLUSIONS: Despite more application, methodological challenges associated with accounting for bereaved caregiver QoL remain that often prevented this important aspect being quantitatively included in NICE decision-making in pediatric TAs.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
HTA19
Topic
Economic Evaluation, Health Technology Assessment
Topic Subcategory
Decision & Deliberative Processes
Disease
Pediatrics