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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
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the eye and adnexa
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ADDQoL - Audit of Diabetes Dependent Quality of Life (versions: ADDQOL-13; ADDQOL-16; ADDQOL-17; ADDQOL-18; ADDQOL-19) 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; BDI-Y; BDI-SF) BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) 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 9; CES-D-10; CES-D-11; CES-D-13; 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; EPQ-R) 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; GDS-30; GDS-12 R - GDS-12 Recidential) GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-7; 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] (versions: HAM-D6; HAM-D17) HARS - Hamilton Anxiety Rating Scale [alias: HAM-A] HIQ - Health Impact Questionnaire IMQ - Independent Mobility Questionnaire IPAQ - International Physical Activity Questionnaire (versions: IPAQ-sv; IPAQ-SF; IPAQ-WS - IPAQ-Walking Section; IPAQ-SB - IPAQ-Sedentary Behavior; IPAQ-A - IPAQ-Adolescents) IPQ - Illness Perceptions Questionnaire (versions: M-IPQ; IPQ-R; IPQ-R BCRL - IPQ-R-breast cancer-related lymphoedema; B-IPQ/BIPQ - Brief-IPQ; IPQ-Schizophrenia; BIPQ-P - BIPQ-Physician point of view; IPQ-RDE - IPQ Revised for Dental Use in Older/Elder Adults) IQCODE - Informant Questionnaire on Cognitive Decline in the Elderly (versions: IQCODE-sf) IVI - Impact of Vision Impairment (versions: IVI-28; IVI-C) Lawton IADL - Lawton Instrumental Activities of Daily Living Scale (versions: Modified Lawton) LLQ - Low Luminance Questionnaire LOT - Life Orientation Test (versions: LOT-R) LSQ - Life Space Questionaire (versions: LSQ-modified) 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; MMSE-2) MOS-HIV - Medical Outcomes Study HIV Health Survey (versions: MOS-HIV-17; MOS-HIV-29) NAS - Nottingham Adaptation Scale NEI VFQ - National Eye Institute Visual Function Questionaire (versions: NEI VFQ-7; NEI VFQ-8; NEI VFQ-9; NEI VFQ-13; NEI VFQ-19; NEI VFQ-39; NEI VFQ-51; NEI VFQ-52; NEI VFQ-25-NOS - NEI VFQ-25-10-item Neuro-Ophthalmic Supplement) 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; PANAS-X - Expanded Form) PFQ - Personality Factor Questionnaire PHQ - Patient Health Questionnaire (versions: PHQ-2; PHQ-4; PHQ-8; PHQ-9; PHQ-9 short; aPHQ-9; PHQ-A; 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; POMS-F - POMS-fatigue; POMS-Bi - POMS-Bipolar) PSQ II / III - Patient Satisfaction Questionnaire II / III PSQI - Pittsburgh Sleep Quality Index PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14; PSS Among People Livng with HIV or AIDS) 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] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS) SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) 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 (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) 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-18; 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; WHOQOL-BREF dialysis)
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