Objective: To quantitatively and qualitatively explore the determinants of quality of life (QOL) in Huntington’s Disease (HD) patients and their caregivers in Peru.

Background: HD is a progressive incurable neurodegenerative disease that has significant detrimental effects on the QOL of patients and their caregivers alike. Previous studies in high-income settings have explored the experiences and difficulties of families affected by HD, however their conclusions are not generalizable to low resource settings such as Peru.

Methods: Individuals with HD and their caregivers were recruited at the Neurogenetics Research Center of the Instituto Nacional de Ciencias Neurologicas (INCN). In this mixed methods study, patients and caregivers complete a socio-demographic questionnaire, the Total Functional Capacity scale (TFC), standardized HD-specific questionnaires (HDQOL and HDQOL-c) to evaluate patient and caregiver QOL, and face-to-face semi-structured interviews. Interview transcripts were analyzed thematically using computer-assisted qualitative analysis software.

Results: As of January 2016, 20 HD patients and 23 caregivers have enrolled, and 8 patients (40%) and 21 (91%) caregivers were able to complete the QOL questionnaires. 9 (45%) of patients and 17 (74%) of caregivers participated in the semi-structured interview. Primary themes from the qualitative analysis thus far were: (i) dealing with the economic insecurity resulting from HD; (ii) misinformation about genetics of HD; (iii) loss of the productive role in family and work; and (iv) fearing the future. Although these themes surfaced in many of the discussions with caregivers and patients alike, the lived experience of different types of caregivers (i.e. mothers, siblings, spouses, or children), as well as patients and caregivers of different socioeconomic and educational levels, varied dramatically.

Conclusions: Preliminary results of this exploratory study, the first on HD QOL in a low-income setting, suggest future interventions in this type of setting should focus on easing the economic burden of HD for patients and their caregivers, while avoiding a one-size fits all approach to this population. Further results will allow for a quantitative analysis of the determinants of QOL in HD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/preliminary-results-for-a-study-on-quality-of-life-in-huntingtons-disease-patients-and-their-caregivers-in-peru/