OBJECTIVES: To identify the themes to inform the content of a new generic quality adjusted life year (QALY) measure that can be used in economic evaluation across health, social care and public health, based on the views of users and beneficiaries of these services.

METHODS: The study was a targeted qualitative review of the literature. A systematic search was undertaken for four study arms: 1) primary qualitative work used in development of generic measures; 2) qualitative reviews on quality of life (QoL) for 17 health conditions; 3) qualitative reviews on QoL for informal carers as well as primary qualitative work on informal care measures; and 4) qualitative reviews on QoL for social carer users as well as primary qualitative work on social care measures. Framework analysis and synthesis was undertaken based on a conceptual model.

RESULTS: The search yielded 27 primary qualitative studies for generic measures, 11 for informal care measures and 4 for social care measures. 137 qualitative reviews on QoL for health conditions were identified while there were 15 for informal care and 17 for social care. Targeted extraction and synthesis resulted in seven high level themes/domains (with sub-themes/domains): feelings and emotions (sadness, anxiety, enjoyment, vulnerability etc.), cognition, activity (leisure, activities of daily living, communication, mobility vision, meaningful activity), self-identity (self-esteem, dignity/respect), relationships and social connections (both positive and negative aspects), ‘coping, autonomy and control’ and physical sensations (pain, fatigue, discomfort). Apart from physical sensations, most of the other themes and sub-themes were relevant across both health and social care, including informal carers.

CONCLUSIONS: The findings from the review have identified themes that go beyond health and that are relevant to patients, informal carers and social care users. The next step is to identify specific questions for the new generic measure.