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Related Concept Videos

Longitudinal Research02:20

Longitudinal Research

Sometimes we want to see how people change over time, as in studies of human development and lifespan. When we test the same group of individuals repeatedly over an extended period of time, we are conducting longitudinal research. Longitudinal research is a research design in which data-gathering is administered repeatedly over an extended period of time. For example, we may survey a group of individuals about their dietary habits at age 20, retest them a decade later at age 30, and then again...

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Patient-Reported Outcomes in RLBP1 Retinal Dystrophy: Longitudinal Assessment in a Prospective Natural History Study.

James Whelan1, Jane Green1, Marie Burstedt2

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Translational Vision Science & Technology
|November 14, 2024
PubMed
Summary

Patient-reported outcome instruments, the National Eye Institute Visual Function Questionnaire-25 (VFQ-25) and Low Luminance Questionnaire (LLQ), effectively assess visual function in patients with retinaldehyde-binding protein 1 retinal dystrophy (RLBP1 RD). These PROs correlate strongly with clinical measures and detect disease progression over time.

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Area of Science:

  • Ophthalmology
  • Genetics
  • Patient-Reported Outcomes

Background:

  • Retinaldehyde-binding protein 1 retinal dystrophy (RLBP1 RD) is a rare genetic disorder affecting vision.
  • Non-disease-specific patient-reported outcome (PRO) instruments may offer valuable insights into the patient experience of visual impairment.

Purpose of the Study:

  • To evaluate the performance of the National Eye Institute Visual Function Questionnaire-25 (VFQ-25) and the Low Luminance Questionnaire (LLQ) in patients with RLBP1 RD.
  • To determine the association between VFQ-25 and LLQ scores and their correlation with clinical measures of visual function and disease progression.

Main Methods:

  • Forty-two patients with RLBP1 RD participated in a three-year prospective study.
  • PROs were assessed using the VFQ-25 and LLQ, with Rasch analysis employed to evaluate item and person measures.
  • Pearson correlation coefficients were used to analyze the association between PROs and clinical measures.

Main Results:

  • Both VFQ-25 and LLQ showed strong and significant correlations with each other and with clinical measures of visual function over three years.
  • Statistically significant declines in peripheral and distance vision, as well as performance in extreme lighting conditions, were observed.
  • Rasch analysis confirmed that the item difficulties of both questionnaires adequately covered the range of person function in this patient group.

Conclusions:

  • The VFQ-25 and LLQ are suitable PRO instruments for assessing visual function in patients with RLBP1 RD.
  • These PROs can provide valuable data on specific disabilities and guide the selection of outcome measures for future clinical trials in RLBP1 RD.