Page Thomas E, Farina Nicolas, Brown Anna, Daley Stephanie, Bowling Ann, Basset Thurstine, Livingston Gill, Knapp Martin, Murray Joanna, Banerjee Sube
School of Psychology, University of Kent, Canterbury, UK.
Centre for Dementia Studies, Brighton and Sussex Medical School, Brighton, UK.
BMJ Open. 2017 Mar 29;7(3):e013611. doi: 10.1136/bmjopen-2016-013611.
Neurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions, so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer's disease and other dementias; Huntington's disease; Parkinson's disease; multiple sclerosis; and motor neuron disease).
Systematic review.
Instruments were identified using 5 electronic databases (PubMed, PsycINFO, Web of Science, Scopus and the International Bibliography of the Social Sciences (IBSS)) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COnsensus based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The psychometric properties of each instrument were examined.
676 articles were identified. Following screening and lateral searches, a total of 8 articles were included; these reported 7 disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the 7 instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change.
There are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease-specific measures of carer QOL.
神经退行性疾病，如痴呆症，对患者及其家庭照顾者有着深远影响。因此，准确测量家庭照顾者的生活质量（QOL）很重要。通用测量方法可能会忽略这些疾病影响的关键因素，所以有人主张使用针对特定疾病的工具。本系统评价旨在识别和检验针对神经退行性疾病（阿尔茨海默病和其他痴呆症；亨廷顿舞蹈病；帕金森病；多发性硬化症；以及运动神经元病）患者家庭照顾者生活质量的特定疾病结局测量工具的心理测量特性。
系统评价。
使用5个电子数据库（PubMed、PsycINFO、科学引文索引、Scopus和社会科学国际文献目录（IBSS））及横向搜索技术来识别工具。只有报告了针对成年家庭照顾者的特定疾病测量工具的开发和/或验证情况且以英文撰写的研究才有资格纳入。使用基于共识的健康测量工具选择标准（COSMIN）清单对纳入研究的方法学质量进行评估。检查了每个工具的心理测量特性。
共识别出676篇文章。经过筛选和横向搜索，共纳入8篇文章；这些文章报告了7种针对特定疾病的照顾者生活质量测量工具。关于这7种工具的心理测量特性的证据有限。心理测量分析主要集中在内部一致性、可靠性和结构效度上。没有一项测量工具评估了效标效度或对变化的反应性。
针对特定神经退行性疾病的照顾者生活质量测量工具非常少。本评价的结果强调了开发和验证心理测量稳健的针对特定疾病的照顾者生活质量测量工具的重要性。
