Abstract
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.
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.
| Original language | English |
|---|---|
| Article number | afae108 |
| Number of pages | 18 |
| Journal | Age and Ageing |
| Volume | 53 |
| Issue number | 5 |
| DOIs | |
| Publication status | Published - 23 May 2024 |
Bibliographical note
Publisher Copyright:© The Author(s) 2024.
Research Groups and Themes
- Ageing and Movement Research Group
Keywords
- Parkinson Disease