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Patient-reported outcome measures suitable for quality of life/well-being assessment in multisectoral, multinational and multiperson mental health economic evaluations
Authors:
Łaszewska, A., Helter, T. M., Nagel, A., Perić, N., and Simon, J.
Abstract:
QUESTION: The aim was to systematically collate and synthesise existing, publicly available patient-reported outcome measure (PROM) information suitable for quality of life (QOL)/well-being measurement in mental health economic evaluations, with specific focus on their applicability in multisectoral, multinational, multiperson economic evaluations and to develop an electronic PROM compendium with meta-data. STUDY SELECTION AND ANALYSIS: A systematic literature search for non-disease-pecific PROMs and their versions suitable for the measurement of QOL/well-being or recovery was conducted from 2008 to February 2020. Six criteria were applied to judge their suitability in multisectoral, multinational, multiperson economic evaluations: (i) availability of separate adult and child/adolescent versions, (ii) availability of a proxy-completion option, (iii) assessing outcomes beyond health, (iv) availability of translations (≥2 language versions), (v) availability of a preference-based valuation, (vi) availability of value sets in more than one country. FINDINGS: The final ProgrammE in Costing, resource use measurement and outcome valuation for Use in multisectoral National and International health economic evaluAtions (PECUNIA) PROM-MH Compendium includes 204 unique scales, out of which 88 are individual instruments, while the remaining 116 scales belong to 46 PROM families with more than one distinctive version. Out of the total 134 individual PROMs/PROM families, 72% have at least two language versions, 8% measure broader well-being beyond health-related QOL, 11% have preference-based valuation, with multiple country sets available for 60% of these. None of the identified PROMs met all six proposed criteria. CONCLUSIONS: The PECUNIA PROM-MH Compendium provides a unique overview of the relevant PROMs and their linked meta-data, and should be a helpful tool when choosing a suitable instrument for future mental health economic evaluations.
DOI:
10.1136/ebmental-2021-300334
URL:
https://mentalhealth.bmj.com/content/ebmental/25/2/85.full.pdf
Journal:
Evid Based Ment Health
issn:
1362-0347 (Print)
Publication year:
2022
pages:
85-92
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Mental and behavioural disorders and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
15D - 15 Dimensional Health-Related Quality Of Life Measure 16D - Sixteen dimensional health-related measure 17D - Seventeen dimensional health-related measure AC-QOL - Adult Carer Quality of Life AHUM - Adolescent Health Utility Measurement AQoL - Adolescent Quality of Life (versions: AQoL-MHS - AQoL-Mental Health Scale) AQoL - Assessment of Quality of Life (versions: AQoL-4D; AQoL-6D; AQoL-7D; AQoL-8D) ASCOT - Adult Social Care Outcomes Toolkit (versions: ASCOT-Carer; ASCOT-Proxy;; ASCOT-Easy read version; ASCOT-SCT4) AUQEI/AUQUEI - Autoquestionnaire Qualité de Vie Enfant Imagé (also: Pictured Child's Quality of Life Questionnaire) Cantril’s Ladder CA-QOL - California Quality of Life CarerQoL - Carer Quality of Life Instrument (versions: CarerQoL-7D) CASP-19 - Control, Autonomy, Selfrealization, Pleasure-19; Quality of Life Scale (versions: CASP-12) CDC HRQOL-4 - Centers for Disease Control Health Related Quality of Life Core Module (versions: CDC HRQOL-14) CHIP - Child Health and Illness Profile (versions: CHIP-CE; CHIP-AE; CHIP-CE/PRF; CHIP-CE/CRF; CHIP-PF50) CHQ-CF - Child Health Questionnaire-Child Form (versions: CHQ-CF45; CHQ-CF87; CHQ-CF-BREF) CHQ-PF - Child Health Questionnaire – Parent Form (versions: CHQ-PF27; CHQ-PF28; CHQ-PF50) CHRIs - Child Health Rating Inventories (versions: CHRIs-HSCT - CHRIs-Hematopoietic Stem Cell Transplantation)
CHSCS - Comprehensive Health Status Classification System (CHSCS-PS - CHSCS-Preschool) CHU9D - Child Health Utility 9D CLQI - Children’s Life Quality Index COMPAS-W - COMPAS-W 26-item scale of wellbeing CQCMH - Capabilities Questionnaire for Community Mental Health CQLI - Client's Quality of Life Index CQOL - Child Quality of Life Questionnaire OR Child Health-Related QOL CS-Base - Chateau Sante Base CWS - Carer Well-being and support questionnaire DCGM - DISABKIDS Chronic Generic Measure (versions: DCGM-37 items) DHP - DUKE Health Profile (versions: DHP-A; DHP-8) DISABKIDS Smileys-6 - DISABKIDS Smiley Measure EFQ - Everyday Feeling Questionnaire EHRQL - Exeter Health-Related Quality Life Measure EQ-5D-3L - euroQoL 5-dimension 3-level EQ-5D-5L - euroQoL 5-dimension 5-level EQ-5D-Y - European Quality of Life-5 Dimensions for youth (versions: EQ-5D-Y Proxy; EQ-5D-Y-3L; EQ-5D-Y-5L; EQ-5D-Y-VAS; EQ-5D-Y-VAS-e-version) EUROHIS-QOL - European Health Interview Survey-Quality of life (versions: EUROHIS-QOL-8; EUROHIS-QOL ESL - Easy to-Understand Sign Language EUROHIS-QOL) FACIT-Sp - FACIT-Spiritual Wellbeing scale (versions: FACIT-Sp-12) FLZ - Fragen zur Lebenszifriedenheit (Questions on Life Satisfaction) (versions: FLZM; FLZM-Cystic Fibrosis) FMWB - Family Member Well-Being Index FQoL - Family Quality of Life Questionnaire [alias: Beach Center Family Quality of Life Scale; Beach Family Quality of Life Questionnaire] FS - Flourishing Scale GCQ - Generic Children’s Quality of Life Measure GSI - General Satisfaction Index GWB - General Well-being Schedule HLQ - Herdecke Quality of Life Questionnaire HUI-2 - Health Utilities Index Mark 2 HUI-3 - Health Utilities Index-Mark 3 HUI - Health Utilities Index ICECAP - ICEpop CAPability measure (versions: ICECAP-Adult; ICECAP-Older) ILK-MARSYS - Inventar zur Erfassung der Lebensqualität bei Kindern und Jugendlichene-Marburger System zur Qualitätssicherung und Therapieevaluation IQI - Infant Quality of Life Instrument ITQoL - Infant Toddler Quality of Life Questionnaire (versions: ITQOL-SF47 - 47-item short form ITQOL) KIDSCREEN-10 Index Score - 10-item Screening for, and Promotion of, Health-Related Quality of Life in Children and Adolescents KIDSCREEN-27 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-27 items KIDSCREEN-52 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-52 (versions: KIDSCREEN-52-e-version) 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) LEIPAD - Leiden-Padua Questionnaire LiSat - Life Satisfaction Checklist (versions: LiSat-9; LiSat-11) LQoL - Lehman's Quality of Life Interview (versions: LQoL-Short / Brief Version) LQOLP - Lancaster Quality of Life Profile (versions: BELP - Berliner Lebensqualitätsprofil) LSS - Life Satisfaction Scale MANSA - Manchester Short Assessment of Quality of Life MHC - Mental Health Continuum ( versions: Short Form) MHI (Q) - McMaster Health Index (Questionnaire) MHRM - Mental Health Recovery Measure (versions: MHRM-10) Mini-SeRvE - Mini-Service user Recovery Evaluation scale MLDL - Munich List of Life Dimensions MLQ - Meaning in Life Questionnaire (versions: MLQ-SF) MPS - Mental Physical Spiritual Well-Being Scale MQLI - Multicultural Quality of Life Index MSQOL - Modular System for Quality of Life MyQualityOfLife.nl NHP - Nottingham Health Profile OHQ - Oxford Happiness Questionnaire (versions: OHQ-sf) OPQOL - Older People Quality of Life (versions: OPQOL-Brief) OQ-45 - Outcome Questionnaire 45 (versions: OQ045.2) OQLQ - Oregon Quality of Life Questionnaire OxCAP - Oxford Capabilities Questionnaire (versions: OxCAP-MH - OxCAP-Mental Health) 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 - Pediatric Quality of Life Inventory (versions: PedsQL VAS) PGI - Patient General Index PGWBS - Psychological General Well-Being Scale PHI - Pemperton Happiness Index PHS-WB - Public Health Surveillance Well-being Scale PMH - Positive Mental Health instrument (versions: PMH-20) PMSW - Physical, Mental and Social Well-Being Scale (versions: PMSW-21) PQ-LES-Q - Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire PQOL - Perceived Quality of Life PROMIS Profiles (versions: 10; 29; 43; 57; 29+2) PROM - Personal Recovery Outcome Measurement PTQOL - Pictorial Thai Quality of Life PWB - Psychological Well-Being Scale (versions: PWB-CIP - in Cognitively Impaired Persons; PWB-18; PWB-42) PWI - Personal Wellbeing Index (versions: PWI-A; PWI-SC - PWI-School Children; PWI-SC8; PWI-ID - PWI-Intellectual Disability) PWS-C - Psychological Well-Being Scale for Caregivers QEWB - Questionnaire for Eudaimonic Well-Being Q-LES-Q - Quality of Life Enjoyment and Satisfaction Questionnaire (versions: Endicott Q-LES-Q; Q-LES-Q-18; Q-LES-Q-SF) 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) QLS-100 - Quality of Life Self-Assessment Inventory QLSI - Quality of Life Systemic Inventory (versions: QLSI-C; QLSI-C-e-version) QOLI - Quality of Life Inventory (versions: QOLI-74; QI-Disability) QOLMD - Quality of Life for Mental Disorders QoL-ME - QoL-instrument for people with severe mental health problems QoL-P - Quality of Life for Proxies QOLP - Quality of Life Profile(versions: QOLP-AV - QOLP-Adolescent Version; QOLP-A - QOLP-Adult; QOLP-SV - QOLP-Seniors; QOLP-PD - QOLP-Physical Disabilities) QoL - Quality of Life (versions: QoL-5; QoL-10) QoLS - Quality of Life Scale QPR - Questionnaire About the Process of Recovery QUALIN - Infant Quality of Life QWB - Quality of Well-Being Scale (QWB-IA - QWB-interview-Administered) QWB-SA - Quality of Well Being Self-administered Scale RAS - Recovery Assessment Scale (versions: RAS-R) ReQoL - Recovering Quality of Life (versions: ReQoL-10; ReQoL-20) ReQuest - Recovery Questionnaire (versions: ReQuest-YP - ReQuest-Young People) RGPS - Recovery Group Participation Scale RPRS - Recovery Promoting Relationships Scale RSA - Recovery Self-Assessment (versions: RSA-B) RSQ - Recovery Style Questionnaire SEIQoL - Schedule for the Evaluation of Individual Quality of Life (versions: SEIQoL-DW - SEIQoL Direct Weighting) SEQOL - Self-Evaluation of Quality of Life SeRvE - Service-user Recovery Evaluation 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-20 - MOS short-form general health survey 20 item 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] SHS - Subjective Happiness Scale SIWB - Spirituality Index of Well-Being SLDS - Satisfaction with Life Domains Scale (versions: SLDS-C; SLDS-BC) SOS-10 - Schwartz Outcome Scale-10 SPF-Ils/SPF-IL-58 - Social Production Function-IL SQI - Spitzer Quality of Life Index (alias: SQLI; SQL) SQLP - Subjective Quality of Life Profile SWBS/SWBQ - Spiritual Well-being Scale/Questionnaire SWB - Subjective Well-Being scale (versions: BBC-SWB; Belgian SWB) SWLS - Satisfaction With Life Scale SWN - Subjective Wellbeing under Neuroleptics (versions: SWN-20; SWN-K - SWN-short form; SWN-long form) SWS - Social Well-Being Scale TAAQOL - TNO-AZL Adult Quality of Life TACQOL - Netherlands Organization for Applied Scientific Research Academic Medical Center-Child Quality of Life (TNO-AZL-Child QOL) (versions: TACQOL-PF - TACQOL-Parent Form) TEAQV - Tableau d’Evaluation Assisté de la Qualité de Vie TedQL - Quality of Life measure for children aged 3–8 years (versions: TeDQL-2; TeDQL-4) TOOL - Tolerability and Quality of Life questionnaire VSP-A - Vecú de Santé Percué Adolescent (versions: VSP-A12; VSP-Ae - VSP-8-10 years; VSP-Ap - VSP-Parents of all ages) WEL - Wellness Evaluation of Lifestyle (versions: 4F-WEL - 4Factor WEL; 5F-WEL; 5F-WEL Elementary; 5F-WEL Teen; 5F-WEL Adult) WEMWBS - Warwick–Edinburgh Mental Well-Being Scale (versions: SWEMWBS - Short WEMWBS; SWEMWBS-7; SWEMWBS-S ) WHO-5 - WHO-5 Well-Being Scale/Index (versions: WHO-10) 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) WHOQOL-OLD - World Health Organization Quality Of Life of older persones (versions: WHOQOL-AGE) WPS - Well-Being Picture Scale (versions: WPS-CV) WQOLI - Wisconsin Quality of Life Index (versions: WQLI - WQOLI - for Mental Health) YAQOL - Quality of Life Instrument for Young Adults YQOL - Youth Quality of Life Instrument (versions: YQOL-DHH; YQOL-SF; YQOL-CS - Craniofacial Surgery; YQOL-FD - Facial Differences; YQOL-R - YQOL-Research; YQOL-S - YQOL-Surveillance; YQOL-W - Weight Module, 21)
