Selai, Caroline; (2000) The development of a technique to assess the quality of life (QOL) of patients with dementia and of their carers. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Although there are quality of life measures, both generic and disease-specific, for most medical conditions, to date none has been developed for the elicitation of subjective reports from patients with dementia. There are a number of methodological issues which make such assessments potentially difficult. Since progressive, global cognitive problems are the cardinal feature of the disorder, the first consideration is whether interviewing patients about their own QOL is feasible. The aim of this research was to develop a quality of life assessment schedule for patients with dementia and to ascertain at what point in the disease-process patient self-report of QOL is no longer possible. A subjective, respondent-driven QOL assessment technique was developed and psychometrically validated. This was based on an existing psychological theory and methods, namely, Personal Construct Theory and Repertory Grid Technique. The resulting Quality of Life Assessment Schedule (QOLAS) is a generic technique. Five domains of functioning are assessed by the method: physical, psychological, social/family, work/economic and cognitive. In order to test the psychometric properties of the new technique, the method was tested in two groups of patients with epilepsy in addition to psychometric testing in patients with dementia and their carers. After piloting the technique in patients with dementia and their carers, the method was slightly modified for use in this context. A group of patients with mild-to-moderate dementia, plus their primary carer, were recruited and interviewed 3 times: at baseline, 6 months later and 12 months from baseline. The interviews conducted were: patient rating self; carer rating patient and carer rating their own QOL. The streamlined, simplified Quality of Life Assessment Schedule (QOLAS) formed the core of the interview in each case. A number of existing generic and disease-specific questionnaires were administered and qualitative data were also collected. The question of the reliability or stability of the patients' perception of their own QOL was addressed in two ways: (i) by looking at correlations between scores obtained on a number of instrument subscales assessing the same, or similar, items; (ii) by a head-to-head comparison of the patients rating themselves and the carer rating the patient on the same instrument. Methodological issues in dementia research such as patient heterogeneity, variations in the pattern of cognitive decline, anosognosia, denial, ambiguity of questions, coping and adjustment are addressed and recommendations are made. Patients with dementia are able to assess and report their own QOL at the onset of their illness but reliability diminishes with disease progression. The findings suggest that the simplified QOLAS technique is a valid procedure in assessing the QOL of patients with mild-to-moderate dementia and the QOL of their principal carer.

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