The Michigan Vision-Related Anxiety Questionnaire: A Psychosocial Outcomes Measure for Inherited Retinal Degenerations

Lacy, Gabrielle D.; Abalem, Maria Fernanda; Andrews, Chris; Abuzaitoun, Rebhi; Popova, Lilia; Santos, Erin P.; Yu, Gina; Rakine, Hanan; Baig, Natasha; Ehrlich, Joshua R.; Fahim, Abigail T.; Branham, Kari; Swenor, Bonnielin K.; Lichter, Paul R.; Dagnelie, Gislin; Stelmack, Joan A.; Musch, David C.; Jayasundera, Thiran

doi:10.1016/j.ajo.2020.12.001

Cited by 15 publications

(10 citation statements)

References 78 publications

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“…As described above, several studies in the literature suggest an association between blindness and impairments in social function. 21 , 28 , 31 , 38 , 47 However a critical gap in the literature is that all of these studies have tended to focus on specific blind populations, have used a wide variety of instruments to measure visual impairment, 111 and have used a wide variety of quality of life instruments, that vary in their measurement of social function, social anxiety and depression. This heterogeneity precludes collating quantitative data across studies to infer the effects of different types of vision loss on social anxiety and depression.…”

Section: Discussionmentioning

confidence: 99%

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The impact of low vision on social function: The potential importance of lost visual social cues

Klauke¹,

Sondocie

Fine

2023

Journal of Optometry

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Section: Discussionmentioning

confidence: 99%

“…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 …”

Section: Introductionmentioning

confidence: 99%

The impact of low vision on social function: The potential importance of lost visual social cues

Klauke¹,

Sondocie

Fine

2023

Journal of Optometry

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“…The University of California at San Francisco group have contributed systematically through use of administrative databases (in which at least approximately 5% of those with 50 or more years of type 1 diabetes carry a diagnosis of dementia) and cross-sectional (and future cohort) methods through the Study Of Longevity In Diabetes (SOLID). In SOLID, though the researchers did not define the proportion of participants with dementia, they found a number of factors to be associated with cognition: one's self-determination for diabetes management ('locus of control'); glycaemic exposure; history of severe hypoglycaemia; history of diabetic ketoacidosis; history of traumatic brain injury; and sleep quality [71][72][73][74][75][76]. Of great historical concern was the potential causal association between hypoglycaemia and subsequent cognitive impairment.…”

Section: Peripheral and Central Nervous System Diseasementioning

confidence: 99%

Discoveries from the study of longstanding type 1 diabetes

et al. 2021

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Award programmes that acknowledge the remarkable accomplishments of long-term survivors with type 1 diabetes have naturally evolved into research programmes to determine the factors associated with survivorship and resistance to chronic complications. In this review, we present an overview of the methodological sources of selection bias inherent in survivorship research (selection of those with early-onset diabetes, incidence-prevalence bias and bias from losses to follow-up in cohort studies) and the breadth and depth of literature focusing on this special study population. We focus on the learnings from the study of longstanding type 1 diabetes on discoveries about the natural history of insulin production loss and microvascular complications, and mechanisms associated with them that may in future offer therapeutic targets. We detail descriptive findings about the prevalence of preserved insulin production and resistance to complications, and the putative mechanisms associated with such resistance. To date, findings imply that the following mechanisms exist: strategies to maintain or recover beta cells and their function; activation of specific glycolytic enzymes such as pyruvate kinase M2; modification of AGE production and processing; novel mechanisms for modification of renin-angiotensin-aldosterone system activation, in particular those that may normalise afferent rather than efferent renal arteriolar resistance; and activation and modification of processes such as retinol binding and DNA damage checkpoint proteins. Among the many clinical and public health insights, research into this special study population has identified putative mechanisms that may in future serve as therapeutic targets, knowledge that likely could not have been gained without studying long-term survivors.

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“…The Michigan Retinal Degeneration Questionnaire and Michigan Vision-related Anxiety Questionnaire are patient-reported outcome measures for adult patients with IRD to assess their vision ability and associated psychosocial health, respectively [ 8 , 9 ]. These IRD-specific measures will begin to be incorporated into clinical trials studying voretigene neparvovec-rzyl as part of their outcomes and other observational studies.…”

Section: Discussionmentioning

confidence: 99%

“…That said, until recently IRD-specific PROMs did not exist. The Michigan Retinal Degeneration Questionnaire (MRDQ) and Michigan Vision-related Anxiety Questionnaire (MVAQ) were recently developed adult IRD-tailored PROMs that assess vision ability and associated psychosocial health, respectively [ 8 , 9 ]. The MRDQ generates an ability score from adult patient-reported visual function in domains representative of physiological visual function pathways and thereby can record a patient’s perspective on emerging therapeutics for these domains by using theta scores (item response theory) derived using a graded response model.…”

Section: Introductionmentioning

confidence: 99%

The State of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Disease

et al. 2022

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Patient-reported outcome measures (PROMs) are questionnaires that assess health outcomes meaningful to the patient. PROMs have multiple applications, such as supporting clinicians’ decision-making for patient care, understanding the impact of disease on patient functioning, and evaluating the efficacy of therapeutics. Though PROMs were developed for various eye conditions, no PROM was tailored to pediatric patients with inherited retinal disease (IRD). Hence, a literature search was conducted using MEDLINE and Embase to identify PROMs potentially relevant to this patient population. This review evaluated selected pediatric PROMs against the US Food and Drug Administration (FDA) guidelines and found restricted use in the context of IRD. As there is a need for PROMs tailored to pediatric patients with IRD, we provide a perspective on applying the International Society for Pharmacoeconomics and Outcomes Research and FDA standards on the development of PROMs specific to IRD. Supplementary Information The online version contains supplementary material available at 10.1007/s40123-022-00514-x.

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The Michigan Vision-Related Anxiety Questionnaire: A Psychosocial Outcomes Measure for Inherited Retinal Degenerations

Cited by 15 publications

References 78 publications

The impact of low vision on social function: The potential importance of lost visual social cues

The impact of low vision on social function: The potential importance of lost visual social cues

Discoveries from the study of longstanding type 1 diabetes

The State of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Disease

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