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Title: Towards a psychosocial model of quality of life in motor neurone disease
Author: Gibbons, Christopher Julian
ISNI:       0000 0004 2737 1071
Awarding Body: University of Liverpool
Current Institution: University of Liverpool
Date of Award: 2011
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Background Quality of life (QoL) in motor neurone disease is a complex issue, and is known to be associated with a number of factors. Previous research has suggested that QoL may be more closely related to psychosocial features of the disease than high levels of functional impairment frequently witnessed in the disease. However, the accuracy of research into patient QoL is potentially mitigated by reliance on generic questionnaire measures that may not be sensitive to the unique experience of living with MND. Fatigue is a salient issue for patients with MND although no previous study has attempted to explore the symptom of fatigue from the perspective of the MND patient and create a disease-specific measurement tool for fatigue. The current study seeks to create an accurate questionnaire measure for fatigue in this population, as well as validating existing measures of anxiety and depression. These measures will be employed to determine the direct and indirect effects between important features of the disease, and their relationship with patient quality of life. The central hypothesis is that quality of life is closely related to fatigue and psychosocial aspects of the disease, including depression and social withdrawal, but is not associated with functional impairment. Methods Initial qualitative interviews with ten MND patients were carried out using an Interpretative Phenomenological Analysis approach to explore the experience of fatigue and validate a 52-item fatigue set for use in this population. Two hundred and ninety eight patients recruited from five MND care centres in Liverpool, Oxford, Preston, Salford and Sheffield completed the Phase One questionnaire suite containing the nascent Neurological Fatigue Index - MND (NFI-MND), The Hospital Anxiety and Depression Scale (HADS), the MND Social Withdrawal Scale and the MND Coping Scale. Psychometric and Rasch analyses are presented for the NFI-MND and the HADS. A subsample of 78 patients recompleted the Phase One questionnaire suite after four to six weeks to assess test-retest validity. Contemporaneous functional status information was taken from the hospital notes of 139 patients from the Phase One cohort. After six months, 107 participants were reconsented to complete the Phase Two questionnaire suite which contained validated versions of the measures included in the Phase One questionnaire pack, in addition to the World Health Organisation Quality of Life Brief Scale (WHOQoL-BREF) and the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R). Preliminary correlation and regression analyses were used to assess relationships within the dataset before entering study variables assessing the relationship between study variables using structural equation mode ling. Results Based on interpretative analysis of interview transcripts, fatigue was defined as reversible motor weakness and whole-body tiredness that was predominantly brought on by muscular exertion and was partially relieved by rest. This bi-partite definition was supported by factor analysis of the 52-item fatigue set. Rasch analysis led to the validation of 'Reversible Motor Weakness' and 'Lack of Energy' scales that closely reflected the patient experience of fatigue. A higher order measure of fatigue was supported by the Rasch model, and consisted to items from both subscales. The original HADS did not satisfy the requirements of the Rasch model, with both sub scales containing misfitting items. Following removal of misfitting items, both the HADS-D and the HADS-A were shown to fit the Rasch model. A higher order measure of psychological distress was confirmed as being valid and suitable for research use. Structural equation modeling revealed that depression and fatigue are key variables in the determination of patient QoL, although fatigue did not exhibit a significant direct effect of QoL. Coping was found to be a strong modifier of both depression and anxiety, and have a strong indirect effect on patient QoL. Conclusion These analyses provided support for the experimental hypothesis that quality of life is strongly associated with fatigue, depression, anxiety, coping and social withdrawal but is not significantly associated with functional status. The objectives of this thesis were met and in doing so many questions regarding fatigue, psychological issues and QoL in MND were answered, providing a strong base upon which future research may be conducted.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available