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A review of patient-reported outcome measures used in uveitis
Authors:
Senthil, M. P., Simon, S., and Constable, P. A.
Abstract:
We review patient-reported outcome measures (PROMs) used to evaluate the quality of life (QoL) in uveitis and provide a quality assessment of the psychometric properties of the PROMs, making it easier to choose the best questionnaire for uveitis. Our review included 158 articles. A total of 98 PROMs were used to measure QoL in uveitis and the National Eye Institute Visual Function Questionnaire 25 (NEI VFQ -25) was the most frequently used PROM in these studies. There were 5 uveitis-specific PROMs, but they were meant for either birdshot choroidopathy or cytomegalovirus retinitis or paediatric uveitis. There are no PROMs developed explicitly for the more common, anterior uveitis, intermediate uveitis, panuveitis, and chronic uveitis. The uveitis-specific PROMs performed better in our quality assessment criteria compared to other PROMs. However, these PROMs were constructed using traditional classical test theory and have not been assessed using the modern family of psychometric assessment methods such as Rasch analysis. As new therapeutic modalities for uveitis such as the new biological agents and steroid implants, continue to evolve, a comprehensive PROM will be increasingly valued in clinical trial settings to compare the effects of treatments from the patient's perspective.
DOI:
10.1016/j.survophthal.2022.11.004
Journal:
Surv Ophthalmol
issn:
0039-6257
Publication year:
2023
pages:
225-240
Symptom status:
Cognitive/mental state
Functional status:
Physical 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:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ADVS - Activities of Daily Vision Scale ASAS HI - Assessment of Spondyloarthritis International Society Health Index ASDAS - Ankylosing Spondylitis Disease Activity Score ASQoL - Ankylosing Spondylitis Quality of Life BASDAI - Bath Ankylosing Spondylitis Disease Activity Index (versions: MiniBASDAI) BASFI - Bath Ankylosing Spondylitis Functional Index BASG - Bath Ankylosing Spondylitis Patient Global Score (also BASGI - BAS Global Index) BDCAF - Bechet’s disease Current activity Form BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BDI-II - Beck Depression Inventory-II BD&MSQ - Birdshot Disease & Medication Symptoms Questionnaire BDQ - Brief Disability Questionnaire BDQoL - Behçet Disease Quality of Life BMQ - Beliefs about Medicines Questionnaire BSAS - Bechet Syndrome Activity Scale BSI - Beck Symptom Inventory BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) CADS - Children's Anxiety and Depression Scale (versions: RCADS - Revised CADS; CADS-r) 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) CHAQ - Childhood Health Assessment Questionnaire (versions: CHAQ-informant only; CHAQ-38; CHAQ-38informant only; CHAQ-parent; CHAQ-e-version) CQR - Compliance Questionnaire of Rheumatology CSQ - Client Satisfaction Questionnaire (versions: CSQ-8 items) DLQI - Dermatology Life Quality Index EASi-QoL - Evaluation of Ankylosing Spondylitis Quality of Life ECQ - Essen Coping Questionnaire EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) EYE-Q - Effects of Youngsters’ Eyesight on Quality of Life FIQ - Fibromyalgia Impact Questionnaire (versions: FIQR - FIQ-Revised; FIQRS - FIQR-Soreness Assessment) FIS / FFSS - Fatigue Impact Scale (FIS) or Fisk Fatigue Severity Score (FFSS) (versions: D-FIS or FIS-D - FIS for daily use; U-FIS - Unidimensional FIS) FPS - Faces Pain Scale (versions: FPS-R; FPS-6; FPS-7; FPS-R; FPS-R; FPS-Smartphone) FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version) GAD - Generalised Anxiety Disorder (versions: GAD-7) GHRQoL - General Health Related Quality of Life Measure GWBI - General Well-Being Index HADS - Hospital Anxiety and Depression Scale HAQ-DI - Health Assessment Questionnaire-Disability Index HAQ - Health Assessment Questionnaire (versions:MHAQ - Modified HAQ; HAQ-II; HAQ-S - HAQ-spondyloarthropathies or HAQ-stiffness; HAQ-Skin; HAQ-pain; HAQ-DI) Health Locus of Control scale IBDDAM - Iranian Bechet Disease Dynamic Activity Measure ILC - Inventory of Life quality in Children and adolescents Index of ADL IND-VFQ (Also IND-VFQ33) - Indian visual function questionnaire (Also: Indian visual function questionnaire 33) JADAS10 - Juvenile Arthritis Activity Score (versions: cJADAS10 - Clinical JADAS10) JAMAR -Juvenile Arthritis Multidimensional Assessment Report KINDL (versions: KINDL-R; KINDL-R-Diabetes; Kiddy Kindl - 4-6 years; Kiddo Kindl - 14-17 years; Kid Kindl - 7-13 years; Kid/Kiddo KINDL - 7-17 years; Kiddy-KINDL CQ - Childrens' Questionnaire; Kiddy-KINDL PQ - Parents' Questionnaire; KINDL CATSCREEN) Lawton IADL - Lawton Instrumental Activities of Daily Living Scale (versions: Modified Lawton) LEI - Leeds Enthesitis Index LSI - Life Satisfaction Index MAF - Multidimensional Assessment of Fatigue (versions: MAF-GFI - MAF-Global Fatigue Index) MDHAQ - Multidimensional Health Assessment Questionnaire (10-ADL and 14-ADL versions) MOS-HIV - Medical Outcomes Study HIV Health Survey (versions: MOS-HIV-17; MOS-HIV-29) MPQ - McGill Pain Questionnaire (versions MPQ-SF; SF-MPQ; LF-MPQ; MPQ-VAS)
NEI VFQ-25 - 25-item National Eye Institute Visual Function Questionnaire 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) NHP - Nottingham Health Profile ODI - Oswestry Disability Index (versions: ODI 2.0; ODI 2.1a; ODI AAOS/MODEMS; chir ODI - chiropractor ODI; revised ODI; modified ODI) OHIP - Oral Health Impact Profile (versions: OHIP-49; OHIP-14; Modified OHIP-14; OHIP-20; OHIP-G - German; OHIP-G5; OHIP-G21; OHIP-OFP - OHIP-Oro Facial Pain; OHIP-EDENT - OHIP assessing edentulous) OHQoL - Oral Health-related Quality of Life Measure (versions: OHQoL-UK) OMIS - Ocular Manifestations in IBD (Inflammatory Bowel Disease) Screening questionnaire OSDI - Ocular Surface Disease Index (and Modified OSDI; 10 item version) PedsQL - Pediatric Quality of Life Inventory (versions: PedsQL VAS) PGA - Physician Global Assessment 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) PsAQoL - Psoriatic Arthritis Quality of Life PSQI - Pittsburgh Sleep Quality Index Pt/POWB - Patient/Parent Overall Well-being Score QOL BCR - QoL impact of Birdshot Chorioretinopathy QOL MEDS - QoL impact of BCR (Birdshot ChorioRetinopathy) medication SAHL - Short Assessment of Health Literacy 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 SF-6D - Short-Form 6D (derived from SF-36 or F-12) SF-8 - 8-item Short Form Health Survey [alias: Medical Outcomes Study (MOS) SF-8] SPI-MOS - Sleep Problems II Index of the Medical Outcomes Study SSL-D - Social Support List-Discrepancy SSL-I - Social Support List-Interaction STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) VAQ - Visual Activities Questionnaire VAS - Visual Analogue Scale (versions: vertical; horizontal; 0-10; 0-100) VCM1 - Core Questionnaire of Vision-Related Quality Of Life Measure VF-14 - Visual Function Index-14 (versions: VF-7) VFQ - Visual Function Questionnaire (versions: VFQ-25; SVFQ - Short VFQ; Palmpilot-VFQ) WEMWBS - Warwick–Edinburgh Mental Well-Being Scale (versions: SWEMWBS - Short WEMWBS; SWEMWBS-7; SWEMWBS-S ) WHOQOL-100 - World Health Organization Quality Of Life Assessment Instrument 100 items WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) WPAI-SHP - Work Productivity and Activity Impairment-Specific Health Problem WSAS - Work and Social Adjustment Scale ZMS - Zerssen Mood Scale
