Enhancing recruitment of individuals living with frailty, multimorbidity and cognitive impairment to Parkinson's research: experiences from the PRIME-UK cross-sectional study.
Background and objectives People with parkinsonism who are older, living in a care home, with frailty, multimorbidity or impaired capacity to consent are under-represented in research, limiting its generalisability. We aimed to evaluate more inclusive recruitment strategies. Methods From one UK cent...
| Published in: | Age & Ageing Vol. 53; no. 5; pp. 1 - 10 |
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| Main Authors: | , , , , , , |
| Format: | Article |
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Oxford University Press / USA
May2024
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| Subjects: | |
| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=177611527&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 177611527 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00020729 AGA jtl: Age & Ageing issn: 00020729 maglogo: N pubinfo: dt: May2024 vid: 53 iid: 5 pid: 622 pub: Oxford University Press / USA artinfo: ui: 177611527 10.1093/ageing/afae108 ppf: 1 ppct: 9 formats: tig: atl: Enhancing recruitment of individuals living with frailty, multimorbidity and cognitive impairment to Parkinson's research: experiences from the PRIME-UK cross-sectional study. aug: au: Tenison, Emma Smith, Matthew D Pendry-Brazier, Danielle Cullen, Anisha Lithander, Fiona E Ben-Shlomo, Yoav Henderson, Emily J affil: Ageing and Movement Research Group , Department of Population Health Sciences, Bristol Medical School, University of Bristol , Bristol BS8 1NU , UK Older People's Unit, Royal United Hospitals Bath NHS Foundation Trust , Bath BA1 3NG , UK Liggins Institute, University of Auckland , Auckland 1023 , New Zealand The National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) at University Hospitals Bristol and Weston NHS Foundation Trust , Bristol , UK su: United Kingdom Cross-sectional method Elder care Human research subjects Medical research Parkinson's disease diagnosis Cognition disorders diagnosis Patient selection Frail elderly Questionnaires Descriptive statistics Confidence intervals Comorbidity sug: subj: Cross-sectional method Elder care Human research subjects Medical research United Kingdom Continuing Care Retirement Communities Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology) Parkinson's disease diagnosis Cognition disorders diagnosis Patient selection Frail elderly Questionnaires Descriptive statistics Confidence intervals Comorbidity keyword: adult cognitive impairment frailty inclusivity mental capacity multimorbidity older adult older people parkinson disease Parkinson's disease telephone underserved populations adult cognitive impairment frailty inclusivity mental capacity multimorbidity older adult older people parkinson disease Parkinson's disease telephone underserved populations ab: Background and objectives People with parkinsonism who are older, living in a care home, with frailty, multimorbidity or impaired capacity to consent are under-represented in research, limiting its generalisability. We aimed to evaluate more inclusive recruitment strategies. Methods From one UK centre, we invited people with parkinsonism to participate in a cross-sectional study. Postal invitations were followed by telephone reminders and additional support to facilitate participation. Personal consultees provided information on the views regarding research participation of adults with impaired capacity. These approaches were evaluated: (i) using external data from the Parkinson's Real World Impact assesSMent (PRISM) study and Clinical Practice Research Datalink (CPRD), a sample of all cases in UK primary care, and (ii) comparing those recruited with or without intensive engagement. Results We approached 1,032 eligible patients, of whom 542 (53%) consented and 477 (46%) returned questionnaires. The gender ratio in PRIME-UK (65% male) closely matched CPRD (61% male), unlike in the PRISM sample (46%). Mean age of PRIME participants was 75.9 (SD 8.5) years, compared to 75.3 (9.5) and 65.4 (8.9) years for CPRD and PRISM, respectively. More intensive engagement enhanced recruitment of women (13.3%; 95% CI 3.8, 22.9%; P = 0.005), care home residents (6.2%; 1.1, 11.2%; P = 0.004), patients diagnosed with atypical parkinsonism (13.7%; 5.4, 19.9%; P < 0.001), and those with a higher frailty score (mean score 0.2, 0.1, 0.2; P < 0.001). Conclusions These recruitment strategies resulted in a less biased and more representative sample, with greater inclusion of older people with more complex parkinsonism. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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