Development of the CGQoL-14: A tool that measures the impact of childhood glaucoma on quality of life
| Saturday, November 2, 2024 |
| 1:00 PM - 1:10 PM |
| Panorama Rooms 2 & 3 |
Overview
Dr Lachlan Knight
Speaker
Dr Lachlan Knight
Women’s and Children’s Hospital, Adelaide
Development of the CGQoL-14: A tool that measures the impact of childhood glaucoma on quality of life
Abstract
Introduction: Disease-specific quality-of-life (QoL) patient-reported outcome measures (PROMs) are considered to provide a deep insight as to how a specific ocular disease may impact one’s QoL. The aim of this study was to develop the first childhood glaucoma-specific QoL PROM suitable for adults impacted by the condition.
Methods: Questions (referred to as items) included on the PROM were developed through four phases: item generation using semi-structured interviews and literature review, item reduction with consideration of item redundancy, cognitive debriefing, and pilot testing using Rasch analysis. Rasch analysis was performed using Winsteps software (Chicago, IL, USA).
Results: A total of 581 items were generated from 47 semi-structured interviews with adults with childhood glaucoma and a literature review. Items covered categories including emotional, social and economic well-being, ocular health concerns, family planning, activity limitations, symptoms, inconveniences and mobility. Items were then reduced to 113 and 12 cognitive interviews were conducted. A resultant 112 items were pilot tested on 93 adults with childhood glaucoma (mean age 41.1 years [range: 18.5-75.4]). After conducting Rasch analysis, a final version of the Childhood Glaucoma QoL 14-item PROM (CGQoL-14) was developed.
Conclusion: The CGQoL-14 is a novel instrument suitable for the assessment of QoL in adults with childhood glaucoma. Future implementation of the CGQoL-14 may assist our understanding and measurement of the impact of childhood glaucoma and encourage a much needed dialogue between clinician and patient to ensure that individuals with childhood glaucoma achieve the best possible QoL.
Methods: Questions (referred to as items) included on the PROM were developed through four phases: item generation using semi-structured interviews and literature review, item reduction with consideration of item redundancy, cognitive debriefing, and pilot testing using Rasch analysis. Rasch analysis was performed using Winsteps software (Chicago, IL, USA).
Results: A total of 581 items were generated from 47 semi-structured interviews with adults with childhood glaucoma and a literature review. Items covered categories including emotional, social and economic well-being, ocular health concerns, family planning, activity limitations, symptoms, inconveniences and mobility. Items were then reduced to 113 and 12 cognitive interviews were conducted. A resultant 112 items were pilot tested on 93 adults with childhood glaucoma (mean age 41.1 years [range: 18.5-75.4]). After conducting Rasch analysis, a final version of the Childhood Glaucoma QoL 14-item PROM (CGQoL-14) was developed.
Conclusion: The CGQoL-14 is a novel instrument suitable for the assessment of QoL in adults with childhood glaucoma. Future implementation of the CGQoL-14 may assist our understanding and measurement of the impact of childhood glaucoma and encourage a much needed dialogue between clinician and patient to ensure that individuals with childhood glaucoma achieve the best possible QoL.
Biography
Lachlan graduated from a Bachelor of Health Sciences and Master of Orthoptics at La Trobe University in 2016. He has since balanced a clinical orthoptics and research career, having completed his PhD at Flinders University in 2023. Lachlan specialises in paediatrics and strabismus, and holds a Clinical Associate Lecturer position within the University of Adelaide Medical School. He is currently primarily based at the Women's and Children's Hospital where he is the Acting Head Orthoptist.
