Patients With Dementia Willing to Restart Research Participation Interrupted by COVID-19

Ross Paterson, PhD, MRCP

At the 14th Clinical Trials on Alzheimer’s Disease Conference (CTAD), November 9-12, investigators from the Dementia Research Centre (DRC) at the National Hospital for Neurology and Neurosurgery, in London, presented data from a questionnaire asking patients with dementia and healthy volunteers about willingness to restart research participation that was interrupted during the COVID-19 pandemic. A “slight preference” was noted for remote research, but a majority of participants did express willingness to visit the facility in-person, albeit with associated concerns. 

Of 527 research participants that were contacted between August 2020 and September 2020, investigators, led by Lucianne Dobson, PhD, Clinical Trial Recruitment Coordinator at the DRC, received 196 responses (37.2%) to the Research Restart Questionnaire, and 163 patients (30.9%) completed at least a portion. Investigators noted that they did not want to create additional burden for this patient population and their caregivers during the ongoing pandemic, so contact was only attempted once, primarily via phone or standard mail, in the absence of an email address.

Participants were asked 3 yes or no questions, which were analyzed quantitatively, and 2 open-ended questions that were analyzed via thematic analysis and qualitative content analysis. When asked if patients were happy about being contacted about restarting research amidst the COVID-19 pandemic, a majority of responders (96.3%; n = 157) said yes.

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When asked if they would be willing to attend an in-person research visit at the DRC, the majority (76.7%; n = 125) again said yes, but also expressed worry about travel to the facility, the COVID-19 preventative measures being taken at the DRC, and general health concerns. Participants were also asked if they would participate in research remotely, with the majority saying they would (89.0%; n = 145), while also expressing worry about ability to perform certain research tasks due to dementia-related communication issues, as well as technology access and proficiency.

A fourth question asked if patients had concerns about their health, with most saying they did not (62.6%), while 39 participants used the opportunity to express worries about COVID-19 posing a risk to their own health or that of others. Investigators found that nearly two-thirds of participants did not think they were at high risk of contracting COVID-19, and a “strong expectation” was expressed that the facility would be following recommended government guidelines. Several participants utilized the fifth question to express positive comments about the DRC and research participation, when asked for general questions and commentary.  

“Our participants were complimentary about our research and staff and were looking forward to continuing participation, even during the pandemic while COVID-19 restrictions were in place,” study coauthor Ross Paterson, PhD, MRCP, Clinical Research Associate at the DRC, et al wrote on the presentation poster. “If participants can be appropriately supported with travel arrangements, advice on protective measures for COVID-19, and with the practicalities of remote research, many concerns could be eliminated, and high research participation rates can be expected during the pandemic. Based on participant preferences, general areas of concern and COVID-19 vulnerability issues, study designs centered around a remote research approach should be employed, where possible.”

“Whilst representing participant opinion as a snapshot at the height of the pandemic, the findings from this survey have provided useful insight into participant research preferences during the pandemic and beyond, and will be used to modify current projects, manage subsequent lockdowns/restrictions, and guide future practical/logistical planning and study design at the DRC,” Paterson et al added.

For more coverage of CTAD 2021, click here.

REFERENCE

Dobson L, Urban F, Paterson R, Crutch S, Barker S, Mummery C. Dementia research participation and patient preferences during the COVID-19 pandemic. Presented at CTAD 2021; November 9-12; Virtual. Poster RP1.