Mallika Prem Senthil, Jyoti Khadka1, John De Roach2, Tina Lamey2, Terri McLaren2, Isabella Campbell2, Eva K Fenwick3,4,5, Ecosse L Lamoureux3,4,5, Konrad Pesudovs1. 1. NHMRC Centre for Clinical Eye Research, Flinders University of South Australia, Adelaide, South Australia, Australia. 2. Australian Inherited Retinal Disease Registry and DNA Bank, Department of Medical Technology and Physics, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia. 3. Centre for Eye Research Australia, University of Melbourne, the Royal Victorian Eye, and Ear Hospital, Melbourne, Victoria, Australia. 4. Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore. 5. Duke-National University of Singapore Medical School, Singapore *mallika.premsenthil@flinders.edu.au.
Abstract
SIGNIFICANCE: 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. PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
SIGNIFICANCE: 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. PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Authors: Gabrielle D Lacy; Maria Fernanda Abalem; Lilia T Popova; Erin P Santos; Gina Yu; Hanan Y Rakine; Julie M Rosenthal; Joshua R Ehrlich; David C Musch; K Thiran Jayasundera Journal: Ophthalmic Genet Date: 2020-06-22 Impact factor: 1.803
Authors: Gabrielle D Lacy; Maria Fernanda Abalem; Chris A Andrews; Rebhi Abuzaitoun; Lilia T Popova; Erin P Santos; Gina Yu; Hanan Y Rakine; Natasha Baig; Joshua R Ehrlich; Abigail T Fahim; Kari H Branham; Bonnielin K Swenor; Paul R Lichter; Gislin Dagnelie; Joan A Stelmack; David C Musch; K Thiran Jayasundera Journal: Am J Ophthalmol Date: 2020-12-09 Impact factor: 5.258
Authors: Francisco M Costela; Konrad Pesudovs; Michael A Sandberg; Carol Weigel-DiFranco; Russell L Woods Journal: Health Qual Life Outcomes Date: 2020-06-22 Impact factor: 3.186
Authors: Myra B McGuinness; Alexis Ceecee Britten-Jones; Lauren N Ayton; Robert P Finger; Fred K Chen; John Grigg; Heather G Mack Journal: Transl Vis Sci Technol Date: 2022-02-01 Impact factor: 3.283
Authors: Gabrielle D Lacy; Maria Fernanda Abalem; Chris A Andrews; Lilia T Popova; Erin P Santos; Gina Yu; Hanan Y Rakine; Natasha Baig; Joshua R Ehrlich; Abigail T Fahim; Kari H Branham; Joan A Stelmack; Bonnielin K Swenor; Gislin Dagnelie; David C Musch; K Thiran Jayasundera Journal: Am J Ophthalmol Date: 2020-08-26 Impact factor: 5.258