Burt, J.A.; (2010) Equity, need and access in health care: a mixed methods investigation of specialist palliative care use in relation to age. Doctoral thesis , UCL (University College London).

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Abstract

The equitable provision of care is a core principle of the NHS. Previous research suggests that older cancer patients may be less likely to use specialist palliative care than younger patients, but studies have failed to fully define and measure clinical need. The aim of this study was to examine use of specialist palliative care in relation to age, after controlling for need. I used a mixed methods approach, grounded in a pragmatic philosophy and drawing upon a health capability account of equitable healthcare. I undertook a focused ethnography of three specialist palliative care services, using documentary evidence, observation of meetings, and interviews to investigate conceptualisations of need for care. I derived two models of need. The first ‘aspirational’ model encompassed physical, psychological, social and spiritual care for patients and carers. However, with limited resources, a predominantly physical model of need was applied. Additionally, observations suggested that care may vary in relation to patient characteristics including age. To locate a suitable measure of need, I conducted a systematic literature review and critical and content appraisal of health-related quality of life instruments. I chose the EORTC QLQ-C30 instrument as the indicator of need in a cross-sectional survey of patients and carers, conducted to measure use of specialist palliative care in relation to age. 252 patients and 137 carers attending four outpatient lung cancer clinics participated. 39% received specialist palliative care. Age was not associated with use of specialist palliative care; metastatic disease, global quality of life (‘need’) and the clinic where treatment was provided were. These findings suggest equitable use of specialist palliative care. However, a comprehensive account of equity must consider both use and quality of care. There were some suggestions that, within a resource-limited context, the quality of care may vary. Future equity research should prospectively consider variations in use and quality of specialist palliative care for different patient groups across all care settings, and from diagnosis to death.

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