Capturing children and young people's perspectives to identify the content for a novel vision-related quality of life instrument.

OBJECTIVE: To describe a child-centered approach to identifying content for a novel self-report questionnaire for assessing vision-related quality of life (QoL) of visually impaired (VI) or blind (BL) children and young people.

DESIGN: Questionnaire development.

PARTICIPANTS: A stratified random patient sample of children and young people who are VI/BL (visual acuity in the better eye Snellen <6/18; logarithm of the minimum angle of resolution <0.51) as the result of any visual disorder, but in the absence of any other significant impairment, aged 10 to 15 years (N=49); and a convenience school-based sample of children and young people who are VI/BL and aged 10 to 17 years (N=29).

METHODS: Individual interviews were conducted with a stratified random sample of 32 children and young people, aged 10 to 15 years, who were VI/BL. The interviews followed a topic guide based on vision-related issues identified from a focus group of affected children and young people, combined with a literature review and consultations with professionals. Collaborative qualitative thematic analysis was undertaken and used to derive draft items of the instrument, using the children's own language wherever possible. Items were reduced, rephrased, and refined through individual consultation, as well as an expert reference group of children and young people who were VI/BL, and supplemented by the research team's consensus.

MAIN OUTCOME MEASURES: A draft 47-item instrument.

RESULTS: A total of 874 potential questionnaire items were initially generated spanning the following domains: social relations, acceptance, and participation; independence and autonomy; psychological and emotional well-being; future-aspirations and fears; functioning-home, school, and leisure; and treatment of eye condition. This was eventually reduced to a 47-item instrument with each item presented as a vignette describing a QoL issue from an "illustrative" child's perspective. Thus, the responding child reports on how much he/she is presently like and how much he/she wishes to be like that child, using a 4-point Likert-type scale.

CONCLUSIONS: 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.