Original ArticleThe Michigan Vision-Related Anxiety Questionnaire: A Psychosocial Outcomes Measure for Inherited Retinal Degenerations
Section snippets
Methods
Approval from the University of Michigan Institutional Review Board (HUM00115127) was obtained before the study and the research was performed in accordance with the Declaration of Helsinki. Participants were English speakers, ≥18 years of age, and were able to provide informed consent. Participants were recruited during routine clinical visits from December 2016 to March 2020 at the Kellogg Eye Center (University of Michigan, Ann Arbor, Michigan, USA) Retinal Dystrophy Clinic, and had a
Phase 1: Item Generation
Fifty-five adult patients with IRDs were interviewed to generate content items targeting 4 conceptual domains pertaining to visual function.11 Repeated patient feedback in the early interviews revealed a need to address themes of worry and anxiety, which prompted the generation of items targeting vision-related anxiety.
Phase 2: Administration
One hundred twenty-eight patients with IRDs were asked items pertaining to vision-related anxiety in functional daily tasks. Participant characteristics are shown in Table 1.
Discussion
In the era of emerging IRD therapeutics, the development of standardized, validated, and reliable outcome measures is critically important.21 Previously, patients with IRDs had minimal treatment options, but recent scientific progress has led to numerous therapeutics under development, including novel gene therapies.21, 22, 23 Furthermore, as critical evaluation of potential therapeutics are required, investigators and clinicians must consider how treatment efficacy can be measured in a way
Conclusion
The current study shows psychometric validation of items pertaining to vision-related anxiety in patients with IRDs and collectively form the MVAQ. The MVAQ measures vision-related anxiety related to dysfunction in either a predominantly cone pathway or a rod pathway. It can be used as a screening tool to direct the attention of a clinician to counseling and psychosocial interventions, as well as to measure baseline and follow-up vision-related anxiety for targeted low vision rehabilitation and
CRediT authorship contribution statement
Gabrielle D. Lacy: Conceptualization, Methodology, Investigation, Writing - original draft, Visualization, Project administration. Maria Fernanda Abalem: Conceptualization, Methodology, Investigation, Writing - original draft, Supervision, Project administration. Chris A. Andrews: Methodology, Formal analysis, Investigation, Writing - original draft, Visualization. Rebhi Abuzaitoun: Investigation, Writing - review & editing. Lilia T. Popova: Conceptualization, Investigation. Erin P. Santos:
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2023, American Journal of OphthalmologyThe impact of low vision on social function: The potential importance of lost visual social cues
2023, Journal of OptometryCitation Excerpt :However, for most of the diseases described above, correlations are found between the extent of vision loss and psychosocial symptoms, suggesting that the vision loss caused by disease progression worsens psychosocial health. While most studies have not specifically examined social functioning, within at least four diseases (ROP, glaucoma AMD, RP) correlations been found between vision loss, depression and impaired social function.21,28,31,38,47 Another reason for suspecting that difficulties understanding visual facial information might lead to social anxiety and depression is that analogous phenomena have been observed in the context of prosopagnosia and ASD.
Beyond the NEI-VFQ: Recent Experience in the Development and Utilization of Patient-Reported Outcomes for Inherited Retinal Diseases
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