The psychosocial and behavioral impact of genetic testing for Lynch Syndrome

Watkins, Kathy E. (2014) The psychosocial and behavioral impact of genetic testing for Lynch Syndrome. Doctoral (PhD) thesis, Memorial University of Newfoundland.

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Abstract

The focus of this doctoral research was to investigate the long-term psychosocial and behavioral implications of genetic testing for and living in families with Lynch syndrome (LS). A primary purpose of the research was to develop a clinical monitoring tool capable of assessing psychosocial adjustment and conduct a psychometric evaluation of the Psychosocial Adjustment to Hereditary Diseases (PAHD) scale. This dissertation consists of five chapters including an introductory and discussion chapter. The middle three chapters focus on the long-term psychosocial and behavioral adjustment to LS and development of the PAHD. Collectively, the studies and resulting manuscripts constitute a thesis that forms the basis for an ongoing and future program of research for monitoring adjustment to hereditary diseases. Adjustment to the presence of hereditary cancer is best described as an evolving state that ebbs and flows in response to changing personal and family experiences in the management of long-term cancer risk and emergence of cancer in the self and/or others. The findings indicate that both carriers and non-carriers experience long-term personal and family challenges in living with the presence of LS. In fact, the findings suggest that the management of LS has implications for many individuals and families that extend well beyond the initial genetic testing event. The results also suggest the importance of personal resources and the family context in facilitating or impeding adjustment. Importantly, a confirmed presence of LS requires lifelong cancer screening and/or surveillance to reduce morbidity and mortality. Therefore, it is crucial to assess how individuals and families are adjusting to hereditary cancer in the long-term. Psychometric testing of the PAHD scale was based on the work of Ware and Gandek (1998). Steeped in the experiences of those living in families with LS, the PAHD was found to be a psychometrically sound scale that is capable of assessing psychosocial adjustment. Preliminary findings support the convergent, discriminant and construct validity of the subscales. It is concluded that the PAHD may be a valuable monitoring tool to identify individuals and families who may require therapeutic interventions. The findings have implications that can be utilized to enhance the clinical management of individuals and families with LS. Individuals living in these families may need supportive interventions to effectively manage their cancer risks and minimize adjustment difficulties. From a policy perspective, resources are needed to enhance the coordination, continuity and provision of health care services that promote optimal health functioning and a quality of life. The familial and lifelong nature of LS necessitates longterm resources to ensure availability and accessibility of interventions that result in improved health outcomes.

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