Abstract
Persons who are at risk for Huntington's Disease (HD) can be tested for the HD gene expansion before symptom onset. People with the gene expansion, but no clinical diagnosis, are in the prodromal phase of HD. This study explored quality of life (QOL) in prodromal HD. Interviews about QOL, conducted with 9 prodromal HD participants and 6 companions, were transcribed. Discourse was coded for emotional valence, content (e.g., coping, spirituality, interpersonal relationships, HD in others, and employment), and time frame (e.g., current, past, and future). Respondents were more positive than negative about the present, which was their major focus. The most common statements were about positive attitudes. Positive statements were made about spirituality, and negative statements were made about HD in other people. Relationships, employment, and coping with HD reflected both positivity and negativity. Participants and companions spoke of the future with different concerns. Applicability of findings to the clinical management of HD are discussed.
Highlights
Huntington’s disease (HD) is a neurodegenerative disorder that causes a triad of cognitive, motor, and psychiatric symptoms [1]
Statements that referred to manifestations of Huntington’s Disease (HD) in others or witnessing HD in others were coded as “HD in other people,” whereas interpersonal interactions with persons affected by HD were coded as “interpersonal.” Agreement about statements related to coping were frequently ambiguous, but coding was improved by only including statements related to how persons were managing behaviors, thoughts, or feelings in relation to their HD status
When participants discussed negative reactions to observing HD in other persons, it was usually in reference to past experiences, which partially accounts for the negative valence surrounding statements about the past. These results suggest that interventions aimed at helping people in the prodromal phase of HD cope with their reactions to manifest HD in other persons may be helpful
Summary
Huntington’s disease (HD) is a neurodegenerative disorder that causes a triad of cognitive, motor, and psychiatric symptoms [1]. It affects approximately 5–7 of every 100,000 persons worldwide [1]. It strikes persons in the prime of their lives, has an adverse impact on quality of life (QOL), and causes untold disability and suffering in patients and their loved ones [2,3,4]. The presence of the HD gene expansion indicates 100% certainty of developing HD at some point in life, if the individual does not die of another cause
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