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Quality of life in age-related macular degeneration: a review of available vision-specific psychometric tools

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Abstract

Purpose

Age-related macular degeneration (AMD) has a considerable impact on older adults’ independence and autonomy. Recently, patient reported outcomes (PROs) such as QoL have been met with increasing interest by the scientific community, healthcare payers and planners. Against this background, the multitude of psychometric tools used to measure QoL in AMD was reviewed.

Methods

A search of the literature from 1990 onwards yielded 355 results, out of which 58 publications were included in the review. Data regarding design, validation and extent of utilization were obtained where available.

Results

The National Eye Institute–Visual Function Questionnaire (NEI VFQ-25-item) was found to be the most often used (29% of studies) and best validated psychometric tool, followed by the Visual Function Questionnaire (VF-14; 17%), and the Impact of Vision Impairment Profile (IVI; 9%). Most tools that were identified have been validated for the use in AMD patients.

Conclusion

Psychometric tools specifically designed to measure vision-related quality of life are well equipped and validated to measure QoL in AMD. More recent developments such as the Macular Disease-dependent Quality of Life (MacDQoL) questionnaire might be able to depict dimensions of vision-related QoL in greater depth. Future studies should endeavour to use a suggested standard when gathering data on vision related QoL, allowing for international comparisons.

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Abbreviations

ADVS:

Activities of daily life dependent upon vision

AMD:

Age-related macular degeneration

DLTV:

Daily living tasks dependend upon vision

EMEA:

European Agency for the Evaluation of Medicinal Products

FDA:

Food and Drug Administration

HrQoL:

Health-related Quality of life

IVI:

Impact of vision impairment

MacDQoL:

Macular Disease-dependent Quality of Life (MacDQoL) questionnaire

NEI VFQ:

National Eye Institute Vision Function Questionnaire

PDT:

Photodynamic therapy

PRO:

Patient reported outcomes

QoL:

Quality of life

SST:

Submacular Surgery Trial

TRR:

Test-retest reliability

VF-14:

Vision function questionnaire 14 items

VCM1:

Vision-related quality of life questionnaire, core instrument

VEGF:

vascular endothelial growth factor

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Acknowledgements

The research was supported by The Deutsche Forschungsgemeinschaft: Heisenberg fellowship SCHO 734/2-1; and EU FP6, Integrated Project “EVI-GENORET” (LSHG-CT-2005-512036).

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  1. Department of Ophthalmology, University of Bonn, Ernst-Abbe-Str. 2, 53127, Bonn, Germany

    Robert P. Finger, Monika Fleckenstein, Frank G. Holz & Hendrik P. N. Scholl

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Finger, R.P., Fleckenstein, M., Holz, F.G. et al. Quality of life in age-related macular degeneration: a review of available vision-specific psychometric tools. Qual Life Res 17, 559–574 (2008). https://doi.org/10.1007/s11136-008-9327-4

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