What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality-adjusted life years? Application to the development of the EQ-HWB?

Tessa Peasgood,John Brazier,Clara Mukuria,Juan Carlos Rejon-Parrilla,Donna Rowen,Stacey Rand,Nancy Devlin,Aki Tsuchiya,Rosemary Lovett,Janice Connell,Jill Carlton,Bhash Naidoo,Karen Jones

doi:10.1007/s10198-021-01306-z

Abstract

Economic evaluation combines costs and benefits to support decision-making when assessing new interventions using preference-based measures to measure and value benefits in health or health-related quality of life. These health-focused instruments have limited ability to capture wider impacts on informal carers or outcomes in other sectors such as social care. Sector-specific instruments can be used but this is problematic when the impact of an intervention straddles different sectors.An alternative approach is to develop a generic preference-based measure that is sufficiently broad to capture important cross-sector outcomes. We consider the options for the selection of domains for a cross-sector generic measure including how to identify domains, who should provide information on the domains and how this should be framed. Beyond domain identification, considerations of criteria and stakeholder needs are also identified.This paper sets out the case for an approach that relies on the voice of patients, social care users and informal carers as the main source of domains and describes how the approach was operationalised in the ‘Extending the QALY’ project which developed the new measure, the EQ-HWB (EQ health and wellbeing instrument). We conclude by discussing the strengths and limitations of this approach. The new measure should be sufficiently generic to be used to consistently evaluate health and social care interventions, yet also sensitive enough to pick up important changes in quality of life in patients, social care users and carers.

Highlights

Economic evaluation combines information on costs and benefits to inform the allocation of scarce resources
These health-related quality of life (HRQoL) measures have limited ability to capture the impacts of health care interventions on others who are indirect beneficiaries such as informal carers [1]
One approach to addressing this difficulty is to develop a new quality of life preference-based measure that covers all domains that are relevant and important across health and social care service users and for informal carers, anchored to a quality-adjusted life year (QALY) scale

Summary

Background

Economic evaluation combines information on costs and benefits to inform the allocation of scarce resources. One approach to addressing this difficulty is to develop a new quality of life preference-based measure that covers all domains that are relevant and important across health and social care service users and for informal carers, anchored to a QALY scale. The theoretical underpinning for the instrument is extra-welfarist [44] both in the commitment to a multi-dimensional measure of benefit (drawing upon an objective list account of QoL) and the role of social preferences in judging the value attributed to different states This is in line with Culyer [45] who has argued that when evaluating healthcare in addition to utility the ‘characteristics of people’, should be taken into consideration. Quantitative assessment helps contextualise any theoretical differences between domains; something may be theoretically but not empirically distinguishable

Discussion

17. WHOQol Group