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Engaging the oldest old in research: lessons from the Newcastle 85+ study

Lookup NU author(s): Dr Karen Davies, Dr Joanna Collerton, Emerita Professor Carol Jagger, Professor John Bond, Sally Barker, June Edwards, Joan Hughes, Judith Hunt, Professor Dame Louise Robinson



BACKGROUND: Those aged 85 and over, the oldest old, are now the fastest growing sector of the population. Information on their health is essential to inform future planning; however, there is a paucity of up-to-date information on the oldest old, who are often excluded from research. The aim of the Newcastle 85+ Study is to investigate the health of a cohort of 85-year-olds from a biological, medical and psychosocial perspective. This paper describes the methods employed for the successful recruitment, retention and evaluation of this cohort. METHODS: Participants were all individuals born in 1921 and registered with a participating general practice in Newcastle and North Tyneside, UK. Involvement comprised detailed health assessments, by a nurse, in their usual place of residence and/or review of their general practice medical records. RESULTS: Of the 1453 individuals eligible to participate, 72% (n = 1042) were recruited; 59% (n = 851) consented to both health assessment and review of general practice records. Key factors for successful involvement included protected time to engage with family and other key gatekeepers, minimising participant burden, through for example home based assessment, and flexibility of approach. Cognitive impairment is a significant issue; due consideration should be given to the ethical and legal issues of capacity and consent. Interim withdrawal rates at phase 2 (18 month post baseline), show 88 out of 854 participants (10%) had withdrawn with approval for continued use of data and materials and a further 2 participants (0.2%) had withdrawn and requested that all data be destroyed. Attrition due to death of participants within this same time frame was 135 (16%). CONCLUSION: Our recruitment rates were good and compared favourably with other similar UK and international longitudinal studies of the oldest old. The challenges of and successful strategies for involving, recruiting and retaining the oldest old in research, including those in institutions, are described to facilitate adequate representation of this growing population in future research into ageing.

Publication metadata

Author(s): Davies K, Collerton JC, Jagger C, Bond J, Barker SA, Edwards J, Hughes J, Hunt JM, Robinson L

Publication type: Article

Publication status: Published

Journal: BMC Geriatrics

Year: 2010

Volume: 10

Print publication date: 17/09/2010

Date deposited: 30/03/2011

ISSN (electronic): 1471-2318

Publisher: BioMed Central Ltd


DOI: 10.1186/1471-2318-10-64

PubMed id: 20849598


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Funder referenceFunder name
Dunhill Medical Trust
North Tyneside Primary Care Trust
Unilever Corporate Research
British Heart Foundation
Medical Research Council
Newcastle Healthcare Charity
Newcastle Primary Care Trust
Newcastle University
G0500997Biotechnology and Biological Sciences Research Council