title: Measuring quality of life in mental health: are we asking the right questions?
abstract: Measuring quality-adjusted-life years using generic preference-based quality of life measures is common practice when evaluating health interventions. However, there are concerns that measures in common use, such as the EQ-5D and SF-6D, focus overly on physical health and therefore may not be appropriate for measuring quality of life for people with mental health problems. The aim of this research was to identify the domains of quality of life that are important to people with mental health problems in order to assess the content validity of these generic measures. Qualitative semi-structured interviews were conducted with 19 people, recruited from UK mental health services, with a broad range of mental health problems at varying levels of severity. This complemented a previous systematic review and thematic synthesis of qualitative studies on the same topic. Seven domains important to quality of life for people with mental health problems were identified: well-being and ill-being; relationships and a sense of belonging; activity; self-perception; autonomy, hope and hopelessness; and physical health. These were consistent with the systematic review, with the addition of physical health as a domain, and revealed a differing emphasis on the positive and negative aspects of quality of life according to the severity of the mental health problems. We conclude that the content of existing generic preference-based measures of health do not cover this domain space well. Additionally, because people may experience substantial improvements in their quality of life without registering on the positive end of a quality of life scale, it is important that the full spectrum of negative through to positive aspects of each domain are included in any quality of life measure.
authors.affiliation: Health Services Research, School of Health and Related Research, University of Sheffield, Sheffield, UK. Electronic address: j.connell@sheffield.ac.uk.
authors.forename: Janice
authors.initials: J
authors.lastname: Connell
authors.affiliation: Health Services Research, School of Health and Related Research, University of Sheffield, Sheffield, UK.
authors.forename: Alicia
authors.initials: A
authors.lastname: O'Cathain
authors.affiliation: Health Economics, School of Health and Related Research, University of Sheffield, Sheffield, UK.
authors.forename: John
authors.initials: J
authors.lastname: Brazier
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D001523:Mental Disorders / Q000523:psychology; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D019057:Quality-Adjusted Life Years; D012649:Self Concept; D013222:State Medicine; D011795:Surveys and Questionnaires / Q000592:standards*; D006113:United Kingdom
keywords: EQ-5D; Mental health; Preference based measures; Quality of life; Recovery; SF-6D; UK; Well-being