by Lesley Brown
The Community Ageing (CARE75+) Study is a national longitudinal cohort study of older people (>75 years) collecting observational data to better understand factors that contribute to people staying well or becoming frail in later life. As well as this, CARE75+ is an active research recruitment platform for studies wanting to recruit older people, including those with advanced frailty. CARE75+ data and participants are very much in demand. To date, CARE75+ has provided data for 27 analyses and participants for 11 studies. It has proved itself to be an efficient, cost effective recruitment method, enabling identification of those with advanced frailty and underserved groups.
However, with the advent of COVID-19, recruitment to CARE75+ came to an abrupt halt. COVID-19 associated restrictions meant face-face interactions were not possible. Additionally, many Clinical Research Network (CRN) staff, previously working on CARE75+, were diverted to urgent public health studies. Therefore, with a combination of imposed restrictions and a much reduced team, we made the decision to move all follow-up assessments to telephone or a web-submission format.
With over a year of these methods ‘under our belt’, it has provided a good opportunity to understand what can and cannot be completed ‘remotely’ with older people. And it turns out we can do quite a lot!
With this in mind, we devised the CARE75+REMOTE study arm. CARE75+ REMOTE assessments will be conducted by telephone, web-submission or by postal questionnaire, depending on the participant’s preference and with flexibility built in. For example, telephone assessments can be undertaken over multiple calls, being mindful of tiredness. Participants will be encouraged and supported to try web-submissions.
Assessments will be conducted at baseline and months 6, 12, 18, 24, 30 and 36. We have limited assessments to a few key outcomes, including activities of daily living, mood, health related quality of life, health and social care use (we can’t ask as many questions as we could face-to-face….). We will ‘pull’ patient record data on medications, comorbidities and frailty via data linkage data from General Practices. Consent to data linkage was previously optional, but it is now mandatory for general practices and participants.
And with a fair few trials and tribulations, mostly of the IT sort, CARE75+REMOTE finally launched with its first recruitment mail out on the 28th May, thanks to Holderness Health General Practice in Hull.
CARE75+ REMOTE should provide important data during a time of national pandemic and an efficient, sustainable model of data collection in the future. However, it is not without challenges and we are mindful that a lack of face-to-face interactions may be less attractive to some participants than the original CARE75+. Our first mail-out has resulted in more people ‘opting out’ from contact by a researcher, suggesting the remote model may be less attractive. But early days….
And with this in mind, we will monitor recruitment rates to ensure that we can still successfully recruit older people across the frailty spectrum, particularly those with advanced frailty and from other underserved groups. There is no point in adopting super-efficient research methods that ultimately fail to reach the population that we want to include.
In the longer term, we plan CARE75+REMOTE running alongside the full CARE75+ schedule. This will include a combination of face-to-face and remote methods. CARE75+REMOTE will be attractive to research sites and will probably suit some older people. However, if the last year has taught us anything, it is that in-person, face-to-face contact is extremely important and we strongly believe that is should continue to play a significant part in research even though we have learnt to embrace other more efficient methods that can save time and cost.
