Healthcare Gaps Impact Huntington’s Patients’ Quality of Life, Study Says

Joana Fernandes, PhD avatar

by Joana Fernandes, PhD |

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Late-onset HD

Patients with Huntington’s disease may not be receiving enough of the healthcare services they need to improve their quality of life, according to a study in Norway.

The research, “Health-related Quality Of Life And Unmet Healthcare Needs In Huntington’s Disease,” was published in the journal Health and Quality of Life Outcomes.

Scientists have yet to find a cure for Huntington’s, so current care consists of managing the disease, alleviating patients’ symptoms, and helping them maintain their functional ability and health-related quality of life, or HRQoL.

The study’s authors define HRQoL as “a multidimensional concept reflecting an impact of disease and/or its treatment on an individual’s physical, emotional and social well-being.”

Previous studies have tried to identify factors that influence HRQoL in Huntington’s patients. Recently some doctors have raised concerns about a possible association between gaps in healthcare and HRQoL.

To look in to this matter, Norwegian researchers asked 84 Huntington’s patients to complete the HRQoL questionnaire EuroQol, EQ-5D-3L. They also used the Needs and Provision Complexity Scale (NPCS) to check for unmet patient healthcare and social-service needs.

The parameters the team analyzed included age, gender, marital status, occupation, residence, housing situation, and such clinical characteristics as disease duration, functional ability, and  comorbidity, or the presence of other diseases. Functional ability was assessed with the Unified Huntington’s Disease Rating Scale (UHDRS).

Patients were divided into five groups according to their disease stage: Stage 1 (12 patients, 14 percent), Stage 2 (22 patients, 27 percent), Stage 3 (19 patients, 23 percent), Stage 4 (14 patients, 16 percent), and Stage 5 (17 patients, 20 percent).

The analysis indicated that patients with advanced stages of Huntington’s — 4 and 5 — had lower HRQoL scores. Patients in the middle stage of the disease — 3 — showed no discernible HRQoL pattern: Some had high scores, others lower.

Importantly, patients with lower HRQoL scores reported high levels of unmet needs, while better functional capacity was associated with higher HRQoL scores.

The results support the notion that the level of unmet healthcare and social-service needs  influences the health status and HRQoL scores of Huntington’s patients.

“In order to improve functioning and HRQoL of patients with HD, it is important that clinicians assess, record and monitor healthcare and social support service needs, as well as follow-up that needs are met,” researchers wrote. “Building partnerships with family caregivers may improve exchange of information and facilitate [personalized] health care delivery.”

“Our findings underline the importance of continuity of care through the whole disease spectrum (early to advanced [Huntington’s disease]), acknowledging the complex and changing nature of this disease.”