COSMIN database

Assessment of patient-reported outcomes in retinal diseases: a systematic review

Authors:
Prem Senthil, M., Khadka, J., and Pesudovs, K.
Abstract:
Advances in the understanding of the genetic, molecular, and cellular biology of retinal diseases have led to the development of new treatments. These expanding treatment options demand appropriate outcome measures for studies of treatment benefit including patient-reported outcomes (PROs). A plethora of PRO instruments assess impacts of retinal diseases from the patients' perspectives. We review all the studies that implemented PRO assessment in retinal diseases and also discuss quality assessment of the PRO instruments. We also include qualitative studies that explored quality of life impact on people with retinal diseases. Most studies used PRO instruments not specifically developed for retinal diseases (non-disease specific), nor have they undergone comprehensive validation in this disease group. A few retina-specific PRO instruments are available, but they suffer from limited content coverage of quality of life. Finally, we discuss the need for a new comprehensive and technologically advanced PRO instrument to assess quality of life impacts in retinal diseases.
DOI:
10.1016/j.survophthal.2016.12.011
URL:
https://ac.els-cdn.com/S0039625716300145/1-s2.0-S0039625716300145-main.pdf?_tid=65951e1e-d2d4-45ba-ac41-bd26e980a0fb&acdnat=1529578712_47b80fdea4362f6e918b9a6787f466f9
Journal:
Surv Ophthalmol
issn:
0039-6257
Publication year:
2017
pages:
546-582
Biological and physiological variables:
Biological and physiological variables
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Seniors (65+)
Disease:
Diseases of and symptoms related to the eye and adnexa
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires