Evidence map›Paper›PMID 36246188›Full record

ArticleOphthalmology science2022

Patient-Reported Health-Related Quality of Life in Individuals with Inherited Retinal Diseases.

Deborah Schofield, Joshua Kraindler, Owen Tan, Rupendra Shrestha, Diana Jelovic, Sarah West, Alan Ma, John Grigg, Robyn V Jamieson

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Ophthalmology science, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

17 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
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  6. Observational
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  12. Medicina (Kaunas, Lithuania) · 2024
    Article
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  14. Choroideremia: The Endpoint Endgame.International journal of molecular sciences · 2023
    Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Deborah SchofieldGenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, North Ryde, Australia.
Joshua KraindlerGenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, North Ryde, Australia.
Owen TanGenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, North Ryde, Australia.
Rupendra ShresthaGenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, North Ryde, Australia.
Diana JelovicEye Genetics Research Unit, Children's Medical Research Institute, University of Sydney, Sydney, Australia.
Sarah WestGenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, North Ryde, Australia.
Alan MaEye Genetics Research Unit, Children's Medical Research Institute, University of Sydney, Sydney, Australia.
John GriggSydney Children's Hospitals Network, Westmead, Australia.
Robyn V JamiesonEye Genetics Research Unit, Children's Medical Research Institute, University of Sydney, Sydney, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Purpose: To evaluate the impact of inherited retinal diseases (IRDs) on quality of life (QoL) using multiattributable health utilities derived from primary patient data. Design: Cross-sectional observational study. Participants: Seventy adult patients (mean age, 42.7 years) with IRD recruited from state-wide services in Australia. Methods: Health utility values were calculated from the Assessment of Quality of Life 8-Dimension (AQoL-8D). Linear regressions were used to analyze the relationship between the 25-item and 39-item National Eye Institute Visual Function Questionnaires (NEI-VFQ-25 and NEI-VFQ-39, respectively) and health utilities from the AQoL-8D. Main Outcome Measures: The AQoL-8D utility values were compared between the IRD cohort and population norms. Regressions were used to determine explanatory power of the NEI-VFQ-25 and NEI-VFQ-39 for health utilities from the AQoL-8D. Results: Average health-related utility for patients with IRD was 0.58, significantly lower than population norms of 0.80. The IRD patient scores were significantly lower than population norms for all 8 domains of the AQoL-8D. Regressions showed a statistically significant relationship between the NEI-VFQ-39 and AQoL-8D, with the NEI-VFQ-39 and other clinical data explaining up to 73% of the variation in AQoL-8D values and 69% of the variation in the NEI-VFQ-25 values. Conclusions: Patients with IRD have significantly lower utility values across all dimensions of QoL, with the largest differences in independent living, senses, and relationships. The NEI-VFQ-25 and NEI-VFQ-39 are highly correlated with overall AQoL-8D utilities and, combined with other data, can reasonably estimate QoL utilities required for cost-effectiveness studies.

Indexed as

AQoL-8D, Assessment of Quality of Life 8-DimensionCost-effectiveness analysisInherited retinal diseasesIRD, inherited retinal diseaseNEI-VFQ-25, 25-item National Eye Institute Visual Function QuestionnaireNEI-VFQ-39, 39-item National Eye Institute Visual Function QuestionnaireQALY, quality-adjusted life-yearQoL, quality of lifeQuality of lifeUtilities

Identifiers

PMID36246188
PMCPMC9560564

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.