COSMIN database

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

Prem Senthil, M., Khadka, J., and Pesudovs, K.
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.
Surv Ophthalmol
Publication year:
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
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the eye and adnexa
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
ADDQoL - Audit of Diabetes Dependent Quality of Life    | 
ADVQ - Activities of Daily Vision Questionnaire
ADVS - Activities of Daily Vision Scale
AI - Activity Inventory
ALQ - Activity Limitation Questionnaire
AMD-HIQ - Age-related Macular Degeneration Health Impact Questionnaire
AMD-SEQ - Age-related Macular Degeneration Self-efficacy Questionnaire
Amsterdam Physical Activity Questionnaire
AVL - Adaptation to Age-Related Vision Loss Scale
BDI - Beck Depression Inventory (versions: mBDI)   
BSI - Brief Symptom Inventory
CBS - Chronic Burden Scale
CDS - Community Disability Scale
CES-D - Centre for Epidemiologic Studies-Depression Scale (versions: CES-D-R; CES-D-8; CES-D-10; CES-D-11; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m)   
CHD-SSI - Coronary Heart Disease patients study Social Support Instrument
CMHS - Cook-Medley Hostility Scale
CRQ - Cytomegalovirus Retinitis Questionnaire
DAF - Discomfort Anxiety Fear Questionnaire
DHQ - Driving Habits Questionnaire
DLTV - Daily Living Tasks Dependent Upon Vision
DSSI - Duke Social Support Index
DTPQ - Daily Task Performance Questionnaire
DTSQ - Diabetes Treatment Satisfaction Questionnaire
EDTQ - Everyday Mobility Difficulties Questionnaire
EMQ - Extended Mainz Questionnaire
EPQ - Eysenck Personality Questionnaire (versions: EPQ-SV)   
ESS - Epworth Sleepiness Scale
Everyday Task Questionnaire
FEQ - Field Expander Questionnaire
FRQ - Face Recognition Questionnaire
FVSQ - Functional Vision Screening Questionnaire
GAS - Global Assessment Scale
GDS - Geriatric Depression Scale (versions: GDS-SF; GDS-5; GDS-15)   
GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36)
GHRQoL - General Health Related Quality of Life Measure
Goldberg's anxiety and depression scales
HADS - Hospital Anxiety and Depression Scale   
HAM-D - Hamilton Rating Scale for Depression [alias: HAMD; HDRS; HRSD]   
HARS - Hamilton Anxiety Rating Scale [alias: HAM-A]
HIQ - Health Impact Questionnaire
IMQ - Independent Mobility Questionnaire
IPAQ - International Physical Activity Questionnaire   
IPQ - Illness Perceptions Questionnaire (versions: M-IPQ; IPQ-R; IPQ-R BCRL - Revised breast cancer-related lymphoedema; Brief-IPQ; IPQ-Schizophrenia)
IQCODE - Informant Questionnaire on Cognitive Decline in the Elderly (versions: IQCODE-sf)   
IVI - Impact of Vision Impairment
Lawton IADL - Lawton Instrumental Activities of Daily Living Scale (versions: Modified Lawton)   
Life Space Questionnaire
LLQ - Low Luminance Questionnaire
LOT - Life Orientation Test (versions: LOT-R)
LVQOL - Low Vision Quality Of Life questionnaire
MDQ - Mobility Difficulties Questionnaire
MDSQ - Macular Disease Society Questionnaire
MEL - Munich Life Event List
Metamorphopsia Questionnaire
MHTSQ - Macular Hole Treatment Satisfaction Questionnaire
MLVAI - Melbourne low vision ADL index
MLVQ - Macular Disease Dependent Quality of Life scale
MLVQ - Manchester Low Vision Questionnaire
MMSE - Mini-Mental State Examination (versions: MMSE-illiterate; telephone MMSE; VCB-MMSE - Videoconference-based-MMSE)   
MOS-HIV - Medical Outcomes Study HIV Health Survey
NAS - Nottingham Adaptation Scale
NEI VFQ - National Eye Institute Visual Function Questionaire (versions: NEI VFQ-9 items)
NVQ - Night Vision Questionnaire (versions: NVQ-39)
OPS - Optimization in Primary and Secondary Control Scale
Pain Questionnaire
PANAS - Positive and Negative Affect Scale (versions: PANAS-20)
PFQ - Personality Factor Questionnaire
PHQ - Patient Health Questionnaire (versions: PHQ-2; PHQ-9; PHQ-9 short; PHQ-22; PHQ-8; PHQ-15)
PMHQ - Posturing for Macular Hole surgery questionnaire
POMS - Profile of Mood States (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS)
PSQ II / III - Patient Satisfaction Questionnaire II / III
PSQI - Pittsburgh Sleep Quality Index
PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14)
PTDS - Posttraumatic Diagnostic Scale
PVFQ - Perceived Visual Function Questionnaire
RDQP - Retinal Detachment Questionnaire
RetDQoL - Retinopathy Dependent Quality of Life
RetTSQ - Retinopathy Satisfaction Treatment Questionnaire
SCL-90-R - Symptom Checklist 90-Revised
SDSCA - Summary of Diabetes Self-Care Activities   
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP)   
SIPV - Vision-Specific Sickness Impact Profile
SLQ - Symptom List Questionnaire
SMDVQ - Stargardt’s Macular dystrophy Vision Questionnaire
SPSI - Social Problem Solving Inventory (versions: SPSI-R)
SSS - Stanford Sleepiness Scale
STAI - State-Trait Anxiety Inventory
TAS - Toronto Alexithymia Scale (versions: TAS-20)
TICS - Telephone Interview for Cognitive Status (versions: TICS-m)
V-ADL - Vision-Related Activity of Daily Living
VCM1 - Core Questionnaire of Vision-Related Quality Of Life Measure
VDQ - Visual Disabilities Questionnaire
VF-14 - Visual Function Index-14 (versions: VF-7)
VFQ - Visual Function Questionnaire (versions: VFQ-25; SVFQ - Short VFQ; Palmpilot-VFQ)
Vitrectomy Satisfaction Questionnaire
VPI - Visual Phenomenon Interview
WBQ - Well-Being Questionnaire [alias: W-BQ] (versions: WBQ-12; WBQ-22; WBQ-28)
WCS - Weighted Co-morbidity Scale
Wechsler Memory Scales - (WMS-R, WMS-III, WMS-IV)
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF)