The Development of a Nystagmus Specific Quality of Life Questionnaire

Purpose To develop a nystagmus-specific quality-of-life (QOL) questionnaire derived from patient concerns based on eudaimonic aspects of well-being. Design Cross-sectional study. Participants A total of 206 participants with nystagmus for factor analysis phase and an additional 42 participants with nystagmus for construct validity phase. Methods Questionnaire items were written on the basis of the 6 domains of everyday living affected by nystagmus that were elicited by previous semistructured interviews conducted with 21 people with nystagmus. After consultation with 8 nystagmus experts, 37 items were administered to 206 people with nystagmus. Factor analysis was used to identify latent factors among the items and identify items to propose new nystagmus QOL scales. Cronbach's alpha was used to assess the internal reliability of the new scales. To assess for discriminate and concurrent validity between the new nystagmus scales and an existing vision-related QOL tool, the Visual Function Questionnaire-25 (VFQ-25) was administered to 42 additional participants. Main Outcome Measures Questionnaire response scores on nystagmus-specific QOL items. Results The factor analysis revealed the retention of 29 items to form a measure comprising 2 distinct subscales reflecting “personal and social” and “physical and environmental” functioning as relating to nystagmus-specific QOL. The Cronbach's alpha coefficients for the “personal and social” functioning scale and “physical and environmental” functioning were 0.95 and 0.93, respectively. Tests for validity of the measure, consistent with a priori predictions, when compared with the VFQ-25, revealed the “physical and environmental” subscale showed concurrent validity (0.88), whereas the “personal and social” subscale was demonstrated to have discriminative validity (0.81). Conclusions We have developed a 29-item, nystagmus-specific QOL questionnaire (NYS-29) based on eudaimonic aspects of well-being with subscales that address not only physical functioning but also psycho-social issues. The NYS-29 is grounded in the perspectives and concerns of those who have nystagmus and can be used to determine the impact of nystagmus on daily living in terms of both physical and psychosocial aspects. Abbreviations and Acronyms AS-20, Adult Strabismus 20; EFA, exploratory factor analysis; NYS-29, 29-item, nystagmus-specific quality of life questionnaire; QOL, quality of life; VFQ-25, Visual Function Questionnaire-25