Date of Submission

2004

Degree Type

Dissertation

Degree Name

Doctor of Psychology (PsyD)

Department

Psychology

Department Chair

Arthur Freeman, Ed.D., ABPP

First Advisor

Stephanie Felgoise, Ph.D., ABPP, Chairperson

Second Advisor

Zachary Simmons, M.D.

Third Advisor

Elizabeth Gosch, Ph.D.

Abstract

In addition to the physiological impact of Amyotrophic Lateral Sclerosis (ALS), patients and spousal caregivers experience significant emotional and psychological reactions to the disease and its course. As there is no effective treatment and no cure for this debilitating, fatal neuromuscular disease, treatment should include psychological interventions to improve patients' disease experience. External factors impacting psychological well-being of patients must be identified to allow for effective and relevant intervention. The current study examined the relationships between level of care provided to patients, caregivers' relationship satisfaction, and caregivers' perceived competence, and whether these factors predict patient quality of life (QOL). It was hypothesized that spousal caregivers' satisfaction in their relationships with patients, as well as their competence as caregivers, would predict ALS patients' QOL beyond level of care required and after various aspects of QOL (within five domains of functioning) were considered. Fifty three spousal ALS patient-caregiver dyads at a predominantly rural university hospital provided data during a multidisciplinary clinic. Caregivers completed the Dyadic Satisfaction Subscale of the Dyadic Adjustment Scale (DAS), Perceived Caregiving Competence Questionnaire, and Level of Care Index. Patients completed the McGill Quality of Life Questionnaire (MQOL), including the Single Item Scale (MSIS) to assess subjectively rated QOL. Correlational and hierarchical multiple regression analyses did not identify a predictive relationship between the hypothesized variables, but did indicate that patients' total MQOL score predicted 32.5 percent of the variance in self-reported QOL, and was the best predictor of this patient variable, as assessed by the MSIS [F (1, 47) = 24.06, p < .05]. This finding suggests that patients, when asked to do so subjectively, accurately represent their QOL, as assessed more indirectly and by varied experiences. Further, QOL is more broadly defined for patients than is solely represented by the MQOL, and not largely dependent on caregivers. Additional research is needed to more accurately understand factors contributing to ALS patients' QOL and means to more precisely measure this construct. Future studies should aim to identify caregiver variables that may influence patient illness experience to justify additional intervention for both members of the spousal dyad in coping with ALS.

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