亨廷顿舞蹈症患者与健康相关的生活质量及未满足的医疗需求
Health-related quality of life and unmet healthcare needs in Huntington's disease.
作者信息
van Walsem Marleen R, Howe Emilie I, Ruud Gunvor A, Frich Jan C, Andelic Nada
机构信息
Centre for Habilitation and Rehabilitation Models and Services (CHARM), Institute for Health and Society, University of Oslo, P.O. Box 1130, Blindern, 0318, Oslo, Norway.
Department of Neurohabilitation, Oslo University Hospital, P.O. Box 4950, Nydalen, 0424, Oslo, Norway.
出版信息
Health Qual Life Outcomes. 2017 Jan 7;15(1):6. doi: 10.1186/s12955-016-0575-7.
BACKGROUND
Huntington's disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients' needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL.
METHODS
In this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington's Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients' HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL.
RESULTS
The patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (β value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (β value 0.564; p < 0.001).
CONCLUSIONS
The study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.
背景
亨廷顿舞蹈症（HD）是一种罕见的神经退行性疾病，患病率为十万分之六。尽管针对HD的研究活动日益增多，但关于医疗保健利用、患者对医疗服务的需求以及健康相关生活质量（HRQoL）的证据仍然匮乏。本研究描述了挪威HD患者队列的HRQoL，并评估了未满足的医疗保健和社会支持服务需求与HRQoL之间的关联。
方法
在这项基于人群的横断面研究中，84名临床诊断为HD且居住在挪威东南部的患者完成了HRQoL问卷欧洲五维度健康量表（EuroQol），即EQ-5D-3L。通过需求与供应复杂度量表（NPCS）评估未满足的医疗保健和社会支持服务需求。此外，使用统一亨廷顿舞蹈病评定量表（UHDRS）功能评估量表确定功能能力。还记录了社会人口统计学特征（年龄、性别、婚姻状况、职业、居住地址、住房情况）和临床特征（疾病持续时间、总功能能力、合并症）。使用描述性统计来描述患者的HRQoL。进行回归分析以研究未满足的医疗保健需求与自我报告的HRQoL之间的关系。
结果
患者被分为五个疾病阶段，具体如下：I期：n = 12（14%），II期：n = 22（27%），III期：n = 19（23%），IV期：n = 14（16%），V期：n = 17（20%）。疾病晚期（IV期和V期）患者的总体HRQoL最低，而中期（III期）患者在EQ-5D-3L的五个维度上健康状况差异最大。包括未满足需求水平、临床特征和人口统计学特征（年龄和教育程度）的回归模型解释了HRQoL中42%的方差。未满足需求水平较高与较低的HRQoL相关（β值 -0.228；p = 0.018），而较好的总功能能力对应较高的HRQoL（β值0.564；p < 0.001）。
结论
研究结果表明，HD患者未获得可能对其HRQoL产生积极影响的医疗服务。
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