Capturing Children and Young People's Perspectives to Identify the Content for a Novel Vision-Related Quality of Life Instrument

Abstract

We demonstrate that a child-centered approach to identifying the content for a self-report vision-related QoL questionnaire is feasible. We suggest this approach is critical to accurately capturing children and young peoples' subjective perspectives on the impact of living with impaired vision.

Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review

“…Seven instruments were intended as measures of QoL (The Impact of Vision Impairment on Children (IVI_C),44 45 Children's Visual Function Questionnaire (CVFQ),46 47 Vision-related Quality of Life of Children and Young People (VQoL_CYP),35 Intermittent Exotropia Questionnaire (IXTQ),48–50 Quality of Life in Children with Vernal Keratoconjunctivitis (QUICK),43 Pediatric Refractive Error Profile (PREP)51–54 and Children's Amblyopia Treatment Quality of Life Questionnaire (CAT-QoL)38); three of functional vision or visual ability (Cardiff Visual Ability Questionnaire for Children (CVAQC),55 LV Prasad–Functional Vision Questionnaire (LVP-FVQ)40 and LV Prasad–Functional Vision Questionnaire Second Version (LVP-FVQ II)39); two of the impact of treatment for the condition (Amblyopia Treatment Index (ATI)56–64 and Emotional Impact of Amblyopia Questionnaire (EIAQ)65); one of symptoms (Convergence Insufficiency Symptom Survey (CISS-V15)66–75); one of both symptoms and QoL (Nasolacrimal Duct Obstruction (NLDO76–79) Questionnaire); one of psychosocial impact of the condition (Psychological Impact Questionnaire (PIQ)80); and one of well-being (Perceived Psychosocial Questionnaire (PPQ)81 82). The Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q)83 84 is interchangeably referred to as a measure of visual function and QoL.…”

“…At the time of writing, two of the 17 instruments were still in early development stages: a QoL questionnaire for children with amblyopia (CAT-QoL38) and a self-report VQoL instrument for children and young people with VI (VQoL_CYP35). A further three instruments were developed for specific trials (PREP,51–54 EIAQ65 and PPQ81 82).…”

“…We found that only some instruments provided a definition of the construct measured (PIQ,80 ATI,56 58 CISS-V15,66–68 73 LVP-FVQ,40 LVP-FVQ II,39 CVFQ46 47 and VQoL_CYP35). Despite lacking an explicit definition, the instruments intended to capture functional outcomes, such as visual ability (eg, CVAQC55), may not be as susceptible to misconceptions, as they are by definition ability and function related, and are therefore likely to correlate closely with functional outcomes assessed objectively (eg, acuity).…”

“…As part of our ongoing programme of research to develop such VQoL and functional vision instruments35 we have undertaken and report here a systematic literature review in which we aimed to: (a) identify all vision- and eye-specific PROMs specifically developed and used to assess the impact of eye disease and treatment in children, (b) assess the quality of the identified instruments against conventional criteria and (c) provide recommendations about the use of these PROMs in paediatric ophthalmology clinical practice or research.…”

Childhood glaucoma surgery in the 21st Century

“…138 Recognition of the importance of the measuring the impact of illness, disability, and treatment from the patient's perspective has resulted in development and evaluation of Patient-Reported Outcome Measures and Patient-Reported Experience Measures for use within paediatric ophthalmology. 139 However, there is a paucity of vision-specific instruments. Hopefully, the fact that patient-led assessment of the impact of disease has developed a high profile in health service planning and policy in some countries will result in more funding for this research.…”