Patient-reported outcomes (PRO's) in glaucoma: a systematic review

Vandenbroeck, Sofie; Geest, Sabina De; Zeyen, Thierry; Stalmans, Ingeborg; Dobbels, Fabienne

doi:10.1038/eye.2011.45

Cited by 50 publications

(49 citation statements)

References 71 publications

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“…It is possible also that the NEI VFQ-25 does not fully capture the whole impact of glaucoma on QoL. 40,41 Future studies should investigate the relationship between structural changes and other metrics of QoL and performance-based tests.…”

Section: Discussionmentioning

confidence: 99%

Association Between Progressive Retinal Nerve Fiber Layer Loss and Longitudinal Change in Quality of Life in Glaucoma

et al. 2015

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IMPORTANCE Evaluation of structural optic nerve damage is a fundamental part of diagnosis and management of glaucoma. However, the relationship between structural measurements and disability associated with the disease is not well characterized. Quantification of this relationship may help validate structural measurements as markers directly relevant to quality of life.OBJECTIVE To evaluate the relationship between rates of retinal nerve fiber layer (RNFL) loss and longitudinal changes in quality of life in glaucoma. DESIGN, SETTING, AND PARTICIPANTS Observational cohort study including 260 eyes of 130 patients with glaucoma followed up for a mean (SD) of 3.5 (0.7) years. All patients had repeatable visual field defects on standard automated perimetry (SAP) at baseline. The 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25) was performed annually, and spectral-domain optical coherence tomography and SAP were performed at 6-month intervals. A joint model was used to investigate the association between change in NEI VFQ-25 Rasch-calibrated scores and change in RNFL thickness, adjusting for confounding socioeconomic and clinical variables. MAIN OUTCOMES AND MEASURESAssociation between change in binocular RNFL thickness (RNFL thickness in the better eye at each point) and change in NEI VFQ-25 scores.RESULTS Progressive binocular RNFL thickness loss was associated with worsening of NEI VFQ-25 scores over time. In a multivariable model adjusting for baseline disease severity and the rate of change in binocular SAP sensitivity, each 1-μm-per-year loss of RNFL thickness was associated with a decrease of 1.3 units (95% CI, 1.02-1.56) per year in NEI VFQ-25 scores (P < .001). After adjusting for the contribution from SAP, 26% (95% CI, 12%-39%) of the variability of change in NEI VFQ-25 scores was associated uniquely with change in binocular RNFL thickness. The P value remained less than .001 after adjusting for potential confounding factors.CONCLUSIONS AND RELEVANCE Progressive binocular RNFL thickness loss was associated with longitudinal loss in quality of life, even after adjustment for progressive visual field loss. These findings suggest that rates of binocular RNFL change are valid markers for the degree of neural loss in glaucoma with significant relationship to glaucoma-associated disability.

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Section: Discussionmentioning

confidence: 99%

Association Between Progressive Retinal Nerve Fiber Layer Loss and Longitudinal Change in Quality of Life in Glaucoma

et al. 2015

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“…According to recent systematic reviews of available vision instruments for glaucoma research, the NEI-VFQ-25 had the highest number of positive ratings in the content validity assessment and is a validated QoL measuring instrument [30,31]. NEI-VFQ-25 captures 11 vision-targeted subscales: global vision rating, difficulty with near-vision activities, difficulty with distance-vision activities, limitations in social functioning, role difficulties, dependency on others, mental health symptoms, driving difficulties, limitations with peripheral and color vision, and ocular pain symptoms [29].…”

Section: Methodsmentioning

confidence: 99%

Health- and Vision-Related Quality of Life in Patients with Ocular Hypertension or Primary Open-Angle Glaucoma

et al. 2013

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Background: The main objective of this analysis was to assess the impact of severity of disease on the quality of life (QoL) of patients with ocular hypertension (OHT) and early, moderate, or advanced primary open-angle glaucoma (POAG). Methods: This multicenter study was conducted at 2 university hospitals and 13 ophthalmology practices in Germany. QoL data were assessed by the Health Utility Index (HUI3) and the 25-item National Eye Institute Visual Function Questionnaire (NEI-VFQ-25). Results: 154 patients (17.5% OHT, 27.9% early, 22.7% moderate, and 31.8% advanced POAG) were included. The HUI3 scores for OHT, early, moderate, and advanced POAG were 0.87 ± 0.09, 0.85 ± 0.15, 0.75 ± 0.23, and 0.58 ± 0.32, respectively. Compared to a normal population matched by age and gender, for moderate and severe POAG a difference of -0.06 ± 0.24 and -0.19 ± 0.28, respectively, was observed. NEI-VFQ-25 scores illustrate different dimensions of the impact on QoL; reduced peripheral vision or difficulties to drive a car were more crucial to glaucoma patients than social factors. Conclusions: The key difference for QoL impairment in glaucoma lies between OHT/early POAG versus moderate/severe POAG, hence every possible effort needs to be made to prevent disease progression over this threshold.

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“…Psychometric properties were also evaluated as follows: sensitivity, specificity, criterion validity, construct validity and reliability. Criteria described by Vandenbroeck et al and Kimberlin et al were used [49,50]. Table 1 shows the questionnaires evaluated per domain and a summary of the pros and cons per instrument.…”

Section: Validated Questionnairesmentioning

confidence: 99%

The ELPAT living organ donor Psychosocial Assessment Tool (EPAT): from ‘what’ to ‘how’ of psychosocial screening - a pilot study

et al. 2017

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Thorough psychosocial screening of donor candidates is required in order to minimize potential negative consequences and to strive for optimal safety within living donation programmes. We aimed to develop an evidence-based tool to standardize the psychosocial screening process. Key concepts of psychosocial screening were used to structure our tool: motivation and decision-making, personal resources, psychopathology, social resources, ethical and legal factors and information and risk processing. We (i) discussed how each item per concept could be measured, (ii) reviewed and rated available validated tools, (iii) where necessary developed new items, (iv) assessed content validity and (v) pilot-tested the new items. The resulting ELPAT living organ donor Psychosocial Assessment Tool (EPAT) consists of a selection of validated questionnaires (28 items in total), a semi-structured interview (43 questions) and a Red Flag Checklist. We outline optimal procedures and conditions for implementing this tool. The EPAT and user manual are available from the authors. Use of this tool will standardize the psychosocial screening procedure ensuring that no psychosocial issues are overlooked and ensure that comparable selection criteria are used and facilitate generation of comparable psychosocial data on living donor candidates.

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Patient-reported outcomes (PRO's) in glaucoma: a systematic review

Cited by 50 publications

References 71 publications

Association Between Progressive Retinal Nerve Fiber Layer Loss and Longitudinal Change in Quality of Life in Glaucoma

Association Between Progressive Retinal Nerve Fiber Layer Loss and Longitudinal Change in Quality of Life in Glaucoma

Health- and Vision-Related Quality of Life in Patients with Ocular Hypertension or Primary Open-Angle Glaucoma

The ELPAT living organ donor Psychosocial Assessment Tool (EPAT): from ‘what’ to ‘how’ of psychosocial screening - a pilot study

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