Martin Webber‘s first blog was published on the new Social Care Elf today. It is a review of a paper on the measurement of quality of life of people with a mental health problem. The Social Care Elf blog is a new venture that Martin Webber was involved in setting up and is one of the many contributors to. It is designed to keep people up to date with reliable social care research, policy and guidance. The posts are written by researchers and experts in practice. They summarise and comment on the latest knowledge on social care, helping people to find the best evidence. The Social Care Elf blog can be viewed here. However, here’s a slightly longer version:
There are diverse ways to understand and measure quality of life. For example, the MANSA (Priebe et al, 1999) measures both objective and subjective indicators of quality of life across multiple life domains such as employment, leisure, finance, social, living situation, family, safety, health and life in general. By contrast, the EQ-5D (Rabin & de Charro, 2001) is a brief generic 6-item tool which asks about mobility, self-care, usual activities, pain/discomfort, anxiety/depression and overall health. EQ-5D is used across a wide range of health conditions and interventions to calculate a single score of health related quality of life on a scale where full health is one and being dead is zero. This is used to calculate Quality Adjusted Life Years, which are frequently used in economic evaluations of interventions in mental health services. Although they are both viewed as measures of quality of life, EQ-5D and MANSA are actually measuring quite different constructs.
Users of mental health services are concerned about the appropriateness of the EQ-5D as an outcome measure (Crawford et al, 2011). They argue that it is too brief to capture the full complexity of the concept of quality of life and it focuses on what professionals consider to be important rather than service users. Literature reviews have found that the EQ-5D, and similar measures such as the SF-6D (Brazier et al, 2002), are not appropriate for people with severe mental health problems (e.g. Papaionnou et al 2011), but they continue to be commonly used. Therefore, I welcome Connell et al’s (2014) study which explored mental health service users’ perspectives on the domains of quality of life which matter the most to them.
Connell et al (2014) conducted a small qualitative study of 19 people who are using mental health services. They recruited eight participants from community mental health teams and nine from a primary care psychological therapy service. Only seven were female and most were aged between 30 and 59, with only one aged below 30 and two aged over 60. None of the participants were in paid employment and most lived alone. Participants were interviewed by an experienced mental health service researcher using a semi-structured topic guide which focused on what the participant felt was important to their quality of life and on a synthesis of qualitative research the team had conducted (Connell et al, 2012).
The themes which emerged from this study – well-being/ill-being; relationships and a sense of belonging; activity; self-perception; autonomy, control and choice; hope and hopelessness; and physical health – mirrored those found in their earlier systematic review, although physical health was identified as an additional domain. However, they found that those with more severe problems spoke about things that took quality away from their lives, whereas those who had less severe problems spoke of things that added quality. This was particularly evident in the well-being/ill-being domain, which raises important questions about the measurement of well-being for people with severe mental health problems, which typically uses positively-framed questions.
In contrast to the findings of the systematic review, the participants in this study expressed concern not only about how they fit with society but also about how society fits with them. A sense of detachment from society and a lack of connection with people around them pose significant challenges to the mental health services which do not engage with the communities in which they are located.
The themes of ‘relationships and a sense of belonging’; ‘hope and hopelessness’; ‘autonomy’; and ‘self-perception’ mirror those found in a systematic review of the recovery literature (Leamy et al 2011). This suggests that there is considerable overlap in the concepts of recovery and quality of life. However, perhaps the most important finding of this study is that the widely used EQ-5D and SF-6D do not measure many aspects of quality of life valued by people with mental health problems. The themes of control; autonomy and choice; self-perception; belonging; and hope/hopelessness are not addressed by these measures and the measurement of ill-being and well-being is inadequate.
Strengths and limitations
This was a well-conducted study and the researchers were explicit about what they did. This lends it credibility and gives me confidence in their findings. However, it was a small study and they did not achieve their desired sample of between 24 and 30 people. They were unable to recruit women with psychosis or people with Obsessive Compulsive Disorder. They reported that they had achieved data saturation, which suggested that they did not need to recruit any more participants. However, we know nothing about the socio-economic or cultural diversity of the sample, so the findings should be taken as largely indicative rather than definitive.
Their data were analysed using framework analysis (Ritchie and Spencer 1994) as this permitted both a priori and emergent themes. Their a priori themes emerged from their systematic review so it is perhaps not surprising that their overall results did not differ substantially from this review. If they had adopted a more grounded approach to their analysis, it is possible that different themes may have emerged. However, they asked two independent researchers to code three transcripts and develop their own themes. That these themes were not substantially different from what the authors found indicates that their approach was likely to be reliable.
The standpoint of the researcher in qualitative research can be influential in determining the outcome of a study. I am therefore left wondering if the findings would be different if the research was conducted by an interviewer whose quality of life had been affected by mental health problems.
This study is an important reminder to mental health service researchers like me that it is important to use appropriate outcome measures when evaluating the effectiveness of interventions. We should pay attention to whether or not people with lived experience of mental health problems were involved in developing them or that they measure what is relevant to them.
This study identified seven domains of quality of life:
- well-being and ill-being
- physical health
- control, autonomy and choice
- relationships and belonging
- hope and hopelessness.
“These domains should form the basis of the future development of measures to address quality of life from the perspective of people with mental health problems” (p.20).
This study has an important message for mental health social workers and other practitioners in mental health services. Quality of life is multi-dimensional and people with mental health problems value different domains, and aspects within them, at different times according to the severity of their problems. If the domains of quality of life identified in this study are used as goals of mental health interventions, it might help services to become more recovery-oriented and focused on what matters to their users.
Brazier, J., Roberts, J. & Deverill, M. (2002) The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21: 271-292
Connell, J., Brazier, J, O’Cathain, A., Lloyd-Jones, M. & Paisley, S. (2012) Quality of life of people with mental health problems: a synthesis of qualitative research. Health and Quality of Life Outcomes, 10: 138
Connell, J., O’Cathain, A. & Brazier, J. (2014) Measuring quality of life in mental health: are we asking the right questions? Social Science & Medicine, 120: 12-20
Crawford, M., Robotham, D., Thana, L., Patterson, S., Weaver, T., Barber, R., Wykes, T. & Rose, D. (2011) Selecting outcome measures in mental health: the views of service users. Journal of Mental Health, 20 (4): 336-346
Leamy, M., Bird, V., Le Boutillier, C., Williams, J. & Slade, M. (2011) A conceptual framework for personal recovery in mental health: systematic review and narrative synthesis. British Journal of Psychiatry, 199: 445-452
Papaionnou, D., Brazier, J. & Parry, G. (2011) How valid and responsive are generic health status measures, such as the EQ-5D and SF-36, in schizophrenia? A systematic review. Value Health, 14 (6): 907-920
Priebe, S., Huxley, P., Knight, S. & Evans, S. (1999) Application and results of the Manchester Short Assessment of Quality of Life (MANSA). International Journal of Social Psychiatry, 45 (1): 7–12
Rabin, R. & de Charro, F. (2001) EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine, 33: 337-343
Ritchie, J. & Spencer, L. (1994) Qualitative data analysis for applied policy research. In Bryman, A. & Burgess, R.G. (eds)Analysing Qualitative Data, Routledge, London, 173-194