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Cross-cultural adaptation and psychometric properties of patient-reported outcome measures in Arabic speaking countries: A scoping review
Authors:
Al-Ebrahim, S. Q., Harrison, J., Chen, T. F., and Mohammed, M. A.
Abstract:
BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly recognized as an indicator of healthcare quality and safety. Over the past decades, there has been a growing interest in using PROMs in Arabic-speaking populations. However, there is a paucity of data regarding the quality of their cross-cultural adaptation (CCA) and measurement properties. OBJECTIVES: To identify PROMs that have been developed, validated or cross-culturally adapted to Arabic and evaluate methodological qualities of CCA and measurement properties. METHODS: MEDLINE, EMBASE, CINAHL, PsycINFO, IPA, and ISI Web of Science were searched using search terms 'PROMs', 'Arabic countries', 'CCA', and 'psychometric properties'. Measurement properties were evaluated using COSMIN quality criteria and CCA quality was assessed using the Oliveria rating method. RESULTS: This review included 260 studies with 317 PROMs, focusing on psychometric testing (83.8%), CCA (75.8%), utilizing PROMs as outcome measures (13.4%), and developing PROMs (2.3%). Out of the 201 cross-culturally adapted PROMs, forward translation was the most frequently reported component of CCA (n = 178), followed by back translation (n = 174). Out of the 235 PROMs that reported measurement properties, internal consistency was the most frequently reported measurement property (n = 214), followed by reliability (n = 160) and hypotheses testing (n = 143). Other measurement properties were less reported, including responsiveness (n = 36), criterion validity (n = 22), measurement error (n = 12), and cross-cultural validity (n = 10). The strongest measurement property was hypotheses testing (n = 143), followed by reliability (n = 132). CONCLUSION: There are several caveats regarding the quality of CCA and measurement properties of PROMs included in this review. Only 1 out of 317 Arabic PROMs met CCA and psychometric optimal quality criteria. Therefore, there is a need to improve the methodological quality of CCA and measurement properties of PROMs. This review provides valuable information for researchers and clinicians when choosing PROMs for practice and research. There were only 5 treatment-specific PROMs, indicating the necessity for more research focusing on development and CCA of such measures.
DOI:
10.1016/j.sapharm.2023.03.007
URL:
https://www.sciencedirect.com/science/article/pii/S1551741123000979?via%3Dihub
Journal:
Res Social Adm Pharm
issn:
1551-7411
Publication year:
2023
pages:
989-1006
Symptom status:
Cognitive/mental state
Functional status:
Physical functioning
General health perceptions / HRQoL:
Health-related quality of life
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ABC scale - Activities-specific Balance Confidence scale (versions: ABC-6; ABCm; ABC-16; ABC-6P; ABC-5L; ABC-6ON)) ABQOL - Autoimmune Bullous Disease Quality of Life ACTS - Anti-Clot Treatment Scale AKPS - Anterior Knee Pain Scale [alias: KPS - Kujala Patellofemoral Score; Kujala Score] (versions: AKPS-6) ALSFRS-R - revised ALS Functional Rating Scale AMSS - Aberdeen Menorrhagia Severity Scale AQSA - Arabic Questionnaire for Symptom Assessment A-SCHFI - Self-care of Heart Failure Index ASES - Arthritis Self-Efficacy Scale (versions: ASES-8; ASES-AS - Ankylosing Spondylitis) Auditory Abilities Questionnaire (versions: Questionnaire 3-7; Questionnaire 1-3) BCTQ - Boston Carpal Tunnel Questionnaire BD-QoL - Behçet’s disease quality of life Questionnaire BQ - Bournemouth Questionnaire CADS - Children's Anxiety and Depression Scale (versions: RCADS - Revised CADS; CADS-r) CBI - Cancer Behavior Inventory (versions: CBI-B - CBI-Brief) CEDL - Child Engagement in Daily Life Measure (versions: Self-care-CEDL - Self-Care Domain of CEDL) CFS - Chalder Fatigue Scale [alias: FQ - Fatigue Questionnaire][alias: FRS - Fatigue Rating Scale] CHAQ - Childhood Health Assessment Questionnaire (versions: CHAQ-informant only; CHAQ-38; CHAQ-38informant only; CHAQ-parent; CHAQ-e-version) CKD-SBI - Chronic Kidney Disease-Symptom Burden Index CNQ-SF - Cancer Needs Questionnaire-Short Form COHIP - Child Oral Health Impact Profile (versions: COHIP-SF; COHIP-Preschool) COIDP - Child Oral Impact on Daily Performance Index (alias: C-OIDP; Child-OIDP) COMI - Core Outcome Measures Index (versions: COMI-Hernia; COMI-hip; COMI-back) Constant Score [alias: Constant-Murley Shoulder Score] (versions: Adjusted Constant) CPQ - Child Perception Questionnaire (versions: CPQ 6-7; CPQ 8-10; CPQ 11-14; CPQ 11-14 Short) CRDQ/CRQ - Chronic Respiratory Disease Questionnaire (versions: SF-CRQ) CSEQ - Cardiac Self-Efficacy Questionnaire CSHI - Classical Singing Handicap Index CU-Q2oL - Chronic Urticaria Quality of Life Questionnaire D-12 - Dyspnea-12 D-39 - Diabetes-39 (versions: D-39 sf) DAS - Dental Anxiety Scale (versions: mDAS; DAS-5 - DAS 5 year; MCDAS - Modified Child DAS; MCDAS-SF; MCDAS with Faces) DLQI - Dermatology Life Quality Index DSM - Diagnostic and Statistical Manual of Mental Disorders (versions: DSM-IV -4th Edition; DSM-5 - DSM 5th edition) DyNaChron Questionnaire ECOHIS - Early Childhood Oral Health Impact Scale ECOS - Osteoporosis Quality of Life Questionnaire (versions: ECOS-16) EORTC QLQ-BM22 - European Organisation for Research and Treatment of Cancer Quality of Life
Questionnaire Bone Metastases module
EORTC QLQ-BR23 - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires, specific module to Breast cancer EORTC QLQ-C30 - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires Core-30 item (versions: EORTC QLQ-C24; EORTC QLQ-C30-v1; EORTC QLQ-C30-v2; EORTC QLQ-C30v3) EORTC QLQ-CIPN20 - European Organization of Research and Treatment of Cancer Quality of Life-Chemotherapy-Induced Peripheral Neuropathy EORTC QLQ-H&N35 - European Organization for Research and Treatment of Cancer Quality of Life Questionnaires Head & Neck 35 (versions: EORTC QLQ-H&N43) EOSQ - Early Onset Scoliosis Questionnaire (versions: EOSQ-24) EQ-5D-5L - euroQoL 5-dimension 5-level FABQ - Fear-Avoidance Beliefs Questionnaire FACIT-F - Functional Assessment of Chronic Illness Therapy- Fatigue Scale FACIT-Sp - FACIT-Spiritual Wellbeing scale (versions: FACIT-Sp-12) FACT-B - Functional Assessment of Cancer Therapy-Breast cancer (versions: FACT-B+4 - plus Arm Morbidity) FACT-BMT - Functional Assessment of Cancer Therapy-Bone Marrow Transplant FDI - Functional Disability Inventory FIQ - Fibromyalgia Impact Questionnaire (versions: FIQR - FIQ-Revised; FIQRS - FIQR-Soreness Assessment) FS - Faces Scale (versions: FS-6 - 6 points FS; FS-7 - 7 points FS) FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version) GAS - Geriatric Anxiety Scale GASS - Glasgow Antipsychotic Side-effects Scale GFI - Groningen Frailty Index GOHAI - Geriatric Oral Health Assessment Index/General OHAI HADS - Hospital Anxiety and Depression Scale HAM-D - Hamilton Rating Scale for Depression [alias: HAMD; HDRS; HRSD] (versions: HAM-D6; HAM-D17) HAQ - Health Assessment Questionnaire (versions:MHAQ - Modified HAQ; HAQ-II; HAQ-S - HAQ-spondyloarthropathies or HAQ-stiffness; HAQ-Skin; HAQ-pain; HAQ-DI) Headache Questionnaire HHIE - Hearing Handicap Inventory for the Elderly (versions: HHIE-S - Screening/shortened version; Adult version; Adult screening version) HLQ - Health Literacy Questionnaire HURT - Headache Under-Response to Treatment ICIQ - International Consultation on Incontinence Questionnaire (versions: ICIQ-SF; ICIQ-FLUTS; ICIQ-male LUTS; ICIQ-Bowel; ICIQ-VS; ISIQ-UI-SF; ICIQ-LTCqol - ICIQ-Long-Term Catheter QoL; ICIQ-Bladder Diary) ICOAP - Intermittent and Constant OsteoArthritis Pain IDAF-4C+ - Index of Dental Anxiety and Fear IDQoL - Infant’s Dermatitis Quality of Life Index 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) I-QOL - Incontinence Quality of Life Instrument ISI - Insomnia Severity Index (versions: PISI - Pediatric ISI) JAMAR -Juvenile Arthritis Multidimensional Assessment Report KDQOL - Kidney Disease Quality of Life (versions: KDQOL-modified; KDQOL-36; KDQOL-SF) 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) KOOS - Knee injury and Osteoarthritis Outcome Score (versions: KOOS-Child; KOOS-JR - KOOS-Joint Replacement; KOOS-12; KOOS-PF - KOOS PatelloFemoral pain and osteoarthritis) KOOS-PS - Knee Injury and Osteoarthritis Outcome Score-Physical function Short form (versions: KOOS-PS-F - KOOS-PS-Female) KOS - Knee Outcome Survey (versions: KOS-ADLS; KOS-ADLS-14; KOS-ADLS-17) LEFS - Lower Extremity Function Scale LLFDI - Late-Life Function and Disability Instrument MAAS - Mindfulness Attention Awareness Scale MaSCS - Metacognitions about symptoms control scale MDASI - MD Anderson Symptom Inventory MDHAQ - Multidimensional Health Assessment Questionnaire (10-ADL and 14-ADL versions) MGQOL - Myasthenia Gravis Quality-of-Life Questionnaire (versions: MGQOL-15R) MIQ - Malocclusion Impact Questionnaire MLHFQ - Minnesota Living with Heart Failure Questionnaire MSAS - Memorial Symptom Assessment Scale (versions: MSAS-SF; MSAS-family; MSAS-caregivers; MSAS-hospice staff) MSK-HQ - Musculoskeletal Health Questionnaire NDI - Neck Disability Index NDI - Nepean Dyspepsia Index (AND NDI-sf - Short-form Nepean Dyspepsia Index) NOOS - Neck OutcOme Score OAKHQOL - Osteoarthritis Knee and Hip Quality of Life (versions: mini OAKHQOL - OAKHQOL-20 items) ODI - Oswestry Disability Index (versions: ODI 2.0; ODI 2.1a; ODI AAOS/MODEMS; chir ODI - chiropractor ODI; revised ODI; modified ODI) OHAT - Oral Health Assessment Tool (versions: OHATNP - OHAT-Nursing Personnel) 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) OKS - Oxford Knee Score ORWELL 97 - Obesity-Related Wellbeing Questionnaire OSES - Osteoporosis Self-efficacy Scale PASS - Pain Anxiety Symptoms Scale (versions: PASS-SF; PASS-20) PCAD - Primary Care Anxiety and Depression Scale PCL- PTSD Checklist (versions: PCL-C - Civilian Version; PTSD-M - Military Version; unspecified; PCL-5 - PCL for DSM-5) PCOSQ - Polycystic Ovary Syndrome Health-Related Quality of Life Questionnaire (versions: MPCOSQ; PCOSQ-50) PCS - Pain Catastrophizing Scale (versions: PCS-Parent; PCS-Child; Postconcussion Catastrophizing Scale) PCT/HPCT - Poker Chip Tool also: Poker Chip Scale PedsQL 3.0 Cancer Module - Pediatric Quality of Life Inventory Cancer Module PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 SF15; PedsQL 4.0 TODDLER; PedsQL 4.0 YOUNG CHILD; PedsQL 4.0 CHILD; PedsQL 4.0 TEENAGER; PedsQL 4.0 SF15 Toddler/Young Child/Child/Teen) PedsQL FIM - Pediatric Quality of Life Inventory Family Impact Module (versions: PedsQL 2.0 FIM) PedsQL-MFS - Pediatric Quality of Life Inventory-Multidimensional Fatigue Scale PF-10a - Short form of physical function measure PFBQ - Pelvic Floor Bother Questionnaire PFQ - Pelvic Floor Questionnaire (versions: mPFQ; APFQ - Australian PFQ; FPFQ - Female PFQ) 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) PIDAQ -Psychosocial Impact of Dental Aesthetics Questionnaire PISQ - Pelvic Organ Prolapse/Urinary Incontinence Sexual Function Questionnaire (versions: PISQ-9; PISQ-12; PISQ-31; PISQ-IR - IUGA revised) PPAQ - Pregnancy Physical Activity Questionnaire PPI - Psychopathic Personality Inventory (versions: ES-PPI - Empathy scale PPI; PPI-R) PROMIS - Patient-Reported Outcomes Measurement Information System PRWE - Patient-Rated Wrist Evaluation [alias: PRWHE - Patient Rated Wrist/Hand Evaluation] PSQI - Pittsburgh Sleep Quality Index PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14; PSS Among People Livng with HIV or AIDS) PVRQOL - Pediatric Voice-Related Quality of Life survey QLDS - Quality of Life in Depression Scale QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index] (versions: QLI-III; QLI-D - QLI-Dialysis; QLI-CV - QLI-Cancer Version; QLI-Cardiac Version; QLI-WV - QLI Wound version) QUALEFFO-41 - Quality of life Questionnaire of the European foundation for Osteoporosis Quick DASH - Quick Disabilities of the Arm, Shoulder and Hand (versions: Modified Quick DASH-9; Quick DASH sport) RAID - Rating Anxiety in Dementia RhinoQoL - Rhinosinusitis Quality of Life survey RMDQ - Roland Morris Disability Questionnaire (versions: RMDQ-18) RSDI - Rhinosinusitis Disability Index SBST - STarT Back Screening Tool SCS - Spiritual Coping Strategies Scale SDSCA - Summary of Diabetes Self-Care Activities Self-reported periodontal Questionnaire 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) SGRQ - St. George's Respiratory Questionnaire (versions: SGRQ-C - SGRQ-COPD; SGRQ-IPF - SGRQ-Idiopathic Pulmonary Fibrosis) Skindex-16 S-LANSS - self-completed version of the Leeds Assessment of Neuropathic Symptoms ans Signs Pain Scale SMILEY - Simple Measure of Impact of Lupus Erythematosus in Youngsters SNOT - Sinonasal Outcome Test (versions: SNOT-16; SNOT-20; SNOT-22; SNOT-23) SScQoL - Systemic Sclerosis Quality of Life Questionnaire SSQOL - Stroke-Specific Quality of Life scale (versions: SS-QoL short version) Stigmatization Scale / Feelings of Stigmatization Questionnaire (versions: 6-item scale) Systemic lupus erythematosus Quality of Life Questionnaire TABQOL - Treatment of Auto immune Bullous Disease Quality of Life TAPES - Trinity Amputation and Prosthesis Experience Scales (versions: TAPES-R) TEMPS - Temperament Evaluation of Memphis, Pisa, Paris and San Diego Auto-Questionnaire TFI - Tilburg Frailty Indicator UAS7 - Urticaria Activity Score 7 UDI - Urogenital Distress Inventory (versions: UDI-6; U-UDI - Urge UDI; MUDI - Male UDII) UW-QoL - University of Washington Quality of Life Questionnaire (versions: UW-QoL-RTOG Modification) VF-14 - Visual Function Index-14 (versions: VF-7) VHI - Voice Handicap Index (versions: VHI-9i; VHI-10; pVHI - paedatric VHI; SVHI - Singing VHI; SVHI-10) WHO Oral Health assessment Questionnaire for adult WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) WOMAC - Western Ontario and McMaster Universities Osteoarthritis Index (versions: Individualized WOMAC; WOMAC-Likert Scale; WOMACsf; WOMAC-12; WOMACv3, foot and ankle; R-WOMAC - Reduced WOMAC; ShortMAC; Modified WOMAC) Word Description Scale WOSI - Western Ontario Shoulder Instability Index
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