Prem Senthil Mallika, Khadka Jyoti, De Roach John, Lamey Tina, McLaren Terri, Campbell Isabella, Fenwick Eva K, Lamoureux Ecosse L, Pesudovs Konrad
NHMRC Centre for Clinical Eye Research, Flinders University of South Australia, Adelaide, South Australia, Australia.
Australian Inherited Retinal Disease Registry and DNA Bank, Department of Medical Technology and Physics, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
Optom Vis Sci. 2019 Jan;96(1):27-34. doi: 10.1097/OPX.0000000000001317.
This study develops psychometrically valid item banks across 10 areas of quality of life (QoL) specific to people with hereditary retinal diseases, which will enable clinicians and researchers to explore the impact of hereditary retinal diseases across all aspects of QoL.
The purpose of this study was to assess the psychometric properties of hereditary retinal disease QoL item banks using Rasch analysis and demonstrate the effectiveness of a computerized adaptive testing (CAT) system in obtaining precise measurement of QoL using only a few items.
The hereditary retinal disease item banks were answered by 233 participants (median age, 58 years; range, 18 to 94 years; female participants, 59%). The hereditary retinal disease item banks cover 10 QoL domains: activity limitation, mobility, emotional, social, convenience, economic, health concerns, visual symptoms, ocular comfort symptoms, and general symptoms. Rasch analysis assessed the psychometric properties of the 10 item banks and provided item calibrations for the development of CAT. Computerized adaptive testing simulations were performed to calculate the average number of items required to gain precise measurement of each QoL domain.
The convenience, economic, visual symptoms, and the social domains formed unidimensional scales. However, the activity limitation and health concerns domains demonstrated multidimensionality and required major modifications to resolve this, which resulted in four new QoL domains, namely, reading, driving, lighting, and concerns about the disease progression. In total, 10 item banks underwent CAT simulation testing, which indicated that 8 to 12 items were required to gain precise measurement of each QoL domain.
We have developed 10 psychometrically valid item banks to measure the QoL domains relevant to people with hereditary retinal diseases. On average, only 5 and 10 items were required to gain measurement at moderate and high precision, respectively.
本研究开发了针对遗传性视网膜疾病患者生活质量（QoL）10个领域的心理测量有效题库，这将使临床医生和研究人员能够探讨遗传性视网膜疾病对生活质量各个方面的影响。
本研究的目的是使用拉施分析评估遗传性视网膜疾病生活质量题库的心理测量特性，并证明计算机自适应测试（CAT）系统仅使用少量题目就能精确测量生活质量的有效性。
233名参与者（年龄中位数为58岁；范围为18至94岁；女性参与者占59%）回答了遗传性视网膜疾病题库。遗传性视网膜疾病题库涵盖10个生活质量领域：活动受限、行动能力、情绪、社交、便利性、经济状况、健康担忧、视觉症状、眼部舒适症状和一般症状。拉施分析评估了这10个题库的心理测量特性，并为计算机自适应测试的开发提供题目校准。进行了计算机自适应测试模拟，以计算精确测量每个生活质量领域所需的平均题目数量。
便利性、经济状况、视觉症状和社交领域形成了单维量表。然而，活动受限和健康担忧领域表现出多维性，需要进行重大修改以解决这一问题，这产生了四个新的生活质量领域，即阅读、驾驶、照明以及对疾病进展的担忧。总共对10个题库进行了计算机自适应测试模拟，结果表明精确测量每个生活质量领域需要8至12个题目。
我们开发了10个心理测量有效的题库，以测量与遗传性视网膜疾病患者相关的生活质量领域。平均而言，分别仅需要5个和10个题目就能以中等和高精度进行测量。
