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Core outcome set for nonpharmacological community-based interventions for people living with dementia at home: A Systematic Review of Outcome Measurement Instruments
Authors:
Harding, A. J. E., Morbey, H., Ahmed, F., Opdebeeck, C., Elvish, R., Leroi, I., Williamson, P. R., Keady, J., and Reilly, S.
Abstract:
BACKGROUND AND OBJECTIVES: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. RESEARCH DESIGN AND METHODS: We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. RESULTS: In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). DISCUSSION AND IMPLICATIONS: This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.
DOI:
10.1093/geront/gnaa071
URL:
https://watermark.silverchair.com/gnaa071.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAwowggMGBgkqhkiG9w0BBwagggL3MIIC8wIBADCCAuwGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMfwfMlWuU4smBRFNxAgEQgIICvW0yd2vHZgj5GWSq19aK3zdFBl6pOzxjXr0q45_pw1ed5m8tDfiYsHdwVkw_YXDoINVml4B_yylzvAkWIRAYRI4wK_EKgVOXsYTMcwKW9XR7ctndouO4gvWQTV7k0sNzl58NE-RqtT29VYeabBNQGcHpGprwFCBmjDogNHQs_x5Q7rI9Nj-gf77BxQOK8Vd2l72wW-fpgZKmh_v_lxpdXqipximV6Zl2kE3xhuiZ9jkG1aoMB-o401V_s2ibwO5ZESoz1LSyEh3sH5XZZXztFu4hA_c6gDkfD-4zD6GgvxgkfY21P-yQwQ7pySnu27vqVNRHumflF0BuZqr3qOn5RQ-m_5L8gmGmVEFmrJ-pP26pj9RE384jZ-ccMlzD6Eq4edSGCEfg6COY-La-KINbmBd2DGUQHQ1AqkxcNf9EifKFkt4XnLDOa7Y4ui3QrjIM9xpVUtUO_hKHn2GLFbl3NV_3OTNyMjw4gOfX-8j2pMcUwyyRBz3H88CP4P1Mx7PdA_lyFCuod949rErZuWbqQ6xo3u2ijDmh0YujiC6wMRwXusdMgycsyfq5jXaWy9-TOr_XMJsxcTAuguexEoTZPujhoq2yfZzIrJ_reSiYPDPWBh80rwlUhnyZL9-SHA2-L0nA05xlh7szWcLccX99EYpoyvXrbL_lRLINPNHjpV9UpoTYlrwQO4jSVdBxPWDjzsYd8D3fc3YFJOfgzxXr0GDuL6V23zmr008j1hpkt4PEj_P7i2NHQY2zfDYUZN8tNQdi1gkadiN4WXGgPMq4pwPIYo7twKhhAiSXZK0pRyvESvb0XsoYfR_SarifcYj6eKbGlbQgdIKuCOm84Hv68nwcKcuMVm1S48PmRyeG3sQzAiU3t5xBgDYNg4vf3qCxLjNZ6O1-wecl6s1LSBgA9M17PqRhbnyN7ZXuM2g-
Journal:
Gerontologist
issn:
0016-9013
Publication year:
2020
pages:
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 nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
15D - 15 Dimensional Health-Related Quality Of Life Measure Adult Social Care Outcome Toolkit AES - Apathy Evaluation Scale (versions: AES-10; AES-S; AES-I; AES-C) AI - Apathy inventory AMI - Autobiographical Memory Interview BAI - Beck Anxiety Inventory (versions: BAI-Youth) BAPM - Brief Assessment of Prospective Memory BASQUID - Bath Assessment of Subjective Quality of Life in Dementia Behavioural Pathology in Alzheimer’s Disease Brief Resilience Scale CASP-19 - Control, Autonomy, Selfrealization, Pleasure-19; Quality of Life Scale (versions: CASP-12) CBS - Cornell–Brown Scale for Quality of Life in Dementia Cohen Mansfield Agitation Inventory COOP/WONCA charts - COOP/WONCA Functional Healh assessment charts CSDD - Cornell Scale for Depression in Dementia DAS - Dyadic Adjustment Scale (versions: RDAS - Revised DAS) DEMQOL - Dementia Quality of Life questionnaire (versions: DEMQOL-U; DEMQOL-Proxy-U; C-DEMQOL - Carer-DEMQOL) DHP - DUKE Health Profile (versions: DHP-A; DHP-8) DQOL - Dementia Quality Of Life D-QOL - Dementia Quality of Life instrument Duke AD EDI-Q - Engagement and Independence in Dementia Questionnaire EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) FES - Falls Efficacy Scale (versions: aFES; amFES; rFES; Iconographical FES; M-FES; FES-10; FES-12; Perform-FES; Tinetti FES) FES-I - Falls Efficacy Scale International (versions: FES-I Short; short FES-I) FrSBe - Frontal System Behavior scale [alias: FLOPS - Frontal Lobe Personality Scale] GAI - Geriatric anxiety inventory (versions: GAI-m; GAI-sf) 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) GSES - General Self Efficacy Scale HHI - Herth Hope Index HSQ-12 - Health Status Questionnaire 12 ICECAP - ICEpop CAPability measure (versions: ICECAP-Adult; ICECAP-Older) Index for Managing Memory Loss IPAQ - International Physical Activity Questionnaire (versions: IPAQ-sv; IPAQ-SF; IPAQ-WS - IPAQ-Walking Section; IPAQ-SB - IPAQ-Sedentary Behavior; IPAQ-A - IPAQ-Adolescents) IRI - Interpersonal Reactivity Index (versions: Brief Interpersonal Reactivity Index) LARS (Also: LARS-I and LARS-C) - Lille Apathy Rating Scale (Also: Informant and Clinician version) Lawton IADL - Lawton Instrumental Activities of Daily Living Scale (versions: Modified Lawton) Lawton Physical Self-Maintenance Scale Long Term Conditions Questionnaire LSNS - Lubben Social Network Scale (versions: LSNS-10; Abbreviated-LSNS; LSNS-R) LSS - Life Satisfaction Scale NEADL - Nottingham Extended Activities of Daily Living Scale NHP - Nottingham Health Profile NPI - Neuropsychiatric inventory (versions: NPI-Anxiety; NPIa - NPI-apathy; NPIa-Q - NPIa brief version; NPI-C - NPI-Clinician; NPI-Q - NPI-brief version; NPI-NH - NPI-Nursing Homes; NPI-CDS - NPI-Caregiver Distress Scale) Older Americans’ Resources and Services Instrumental Activities of Daily Living Older People’s Quality of Life Older People’s Quality of Life Brief Version PASE - Physical Activity Scale for the Elderly Philadelphia Geriatric Center (PGC) Morale Scale PPOM - Positive Psychology Outcome Measure PSQI - Pittsburgh Sleep Quality Index PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14; PSS Among People Livng with HIV or AIDS) PSWQ - Penn State Worry Questionnaire (versions: PSWQ-Abbreviated; PSWQ-A-m) PWI - Personal Wellbeing Index (versions: PWI-A; PWI-SC - PWI-School Children; PWI-SC8; PWI-ID - PWI-Intellectual Disability) QOL-AD - Quality of Life in Alzheimer’s Disease (versions: QOL-AD NH - Nursing Homes) Quality of Life Scale Relationship Satisfaction Scale RPWB - Ryffs Scales of Psychological Well-being (84, 54, or 18 items) RSES - Rosenberg Self-Esteem Scale (versions: RSES-10) SAS - Starkstein Apathy Scale (versions: SAS-I; SAS-6) Self-Esteem Scale 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-8 - 8-item Short Form Health Survey [alias: Medical Outcomes Study (MOS) SF-8] SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) SIWB - Spirituality Index of Well-Being SMAS - Self-Management Ability Scale (versions: SMAS-30; SMAS-S - SMAS-Short) STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) WHO-5 - WHO-5 Well-Being Scale/Index (versions: WHO-10) WHOQOL-100 - World Health Organization Quality Of Life Assessment Instrument 100 items YPAS - Yale Physical Activity Survey
