Quality of life and participation of young adults with a visual impairment aged 18-25 years: comparison with population norms

Purpose To compare health-related quality of life and participation of visually impaired young adults with normative groups, and to explore severity of vision loss and its association with participation and quality of life. Methods Young adults aged 18-25 years (n = 172) registered at two Dutch low vision rehabilitation organizations completed the Short Form Health Survey (SF-36), EuroQol-5 Dimensions (EQ-5D), Impact on Participation and Autonomy (IPA) and Low Vision Quality of Life questionnaire (LVQOL). EQ-5D and SF-36 scores were compared to age-specific norms. IPA scores were compared to norms of a population having three chronic diseases simultaneously. Linear regression was used to assess the association between severity of vision loss (mild VI, moderate VI and severe VI/blindness), and quality of life and participation. Results Participants scored significantly worse on almost all (sub)scales compared with relevant norms. Effect sizes for the EQ-5D and SF-36 (sub)scales were mostly small; moderate and large effect sizes were found for the IPA. Compared to young adults with mild VI, corrected models showed a significant association between having moderate VI and the physical component score of the SF-36, and between severe VI/blindness and the LVQOL. Conclusion VI has a moderate impact on some aspects of quality of life and a large impact on participation of young adults when compared with relevant normative populations. Severity of vision loss is associated with worse physical functioning and vision-related quality of life. The results contribute to a better understanding of the impact of VI and might lead to improved low vision services.