Abstract
The studies reported examined the feasibility of assessing QoL, and the factors that influence QoL perceptions, in persons with late-stage neurodegenerative illness. Residents with a range of diagnoses from the Royal Hospital for Neuro-disability, Putney, took part in five studies. The first assessed the psychometric properties of the SEIQoL-DW and the SF-36. The SEIQoL-DW, which measures QoL from the patient’s perspective, was valid and responsive to reported life changes within this population. The health-based SF-36 was unresponsive and produced floor and ceiling effects. The SEIQOL-DW was retained for use across studies 2 to 5. The relationship between social comparison processes, cognitive functioning and QoL was examined in study 2, results suggesting that cognitive ability to make comparisons and life changes influence the potentially negative consequences of making comparisons with one’s own past when evaluating present QoL. Memory ability also affected perceived QoL; individuals with autobiographical memory deficits reported a higher QoL than those without this deficit. Across studies 1 and 2, time spent outside and time spent in one-to-one company were frequently nominated areas on the SEIQoL-DW. Intervention studies 3 and 4 suggested that both these activities may improve patient QoL, whilst time spent on the ward unaccompanied may be detrimental to perceived QoL. Study 5 examined the feasibility of using the WHOQOL-BREF with persons with severe neurological disability. Results suggested that the WHOQOL-BREF may provide a useful alternative where reduced cognitive functioning limits the utility of the SEIQoL-DW. Additionally, further investigation of the relationship between comparison strategy and QoL assisted in the development of a theoretical model of social comparisons and QoL in persons with severe neurological disability. The present research demonstrates that it is possible validly to assess QoL within this population using a person-centred approach, and that this provides valuable information that may assist in enhancing individual patient QoL.