title: Engaging the oldest old in research: lessons from the Newcastle 85+ study.
abstract: 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 Interim withdrawal rates at phase 2 (18 month post baseline), show 88 out of 854 participants (10%) had withdrawn with approval for continued use of data and materials and a further 2 participants (0.2%) had withdrawn and requested that all data be destroyed.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%).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute for Ageing and Health, Newcastle University, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK. Karen.davies@ncl.ac.uk
authors.forename: Karen
authors.initials: K
authors.lastname: Davies
authors.forename: Joanna C
authors.initials: JC
authors.lastname: Collerton
authors.forename: Carol
authors.initials: C
authors.lastname: Jagger
authors.forename: John
authors.initials: J
authors.lastname: Bond
authors.forename: Sally A H
authors.initials: SA
authors.lastname: Barker
authors.forename: June
authors.initials: J
authors.lastname: Edwards
authors.forename: Joan
authors.initials: J
authors.lastname: Hughes
authors.forename: Judith M
authors.initials: JM
authors.lastname: Hunt
authors.forename: Louise
authors.initials: L
authors.lastname: Robinson
mesh_terms: D000367:Age Factors; D000369:Aged, 80 and over / Q000523:psychology*; D035843:Biomedical Research / Q000379:methods*; D015331:Cohort Studies; D005190:Family / Q000523:psychology; D006707:Homes for the Aged; D006801:Humans; D016743:Mental Competency / Q000523:psychology; D010358:Patient Participation / Q000379:methods* / Q000523:psychology*; D018579:Patient Selection; D006113:United Kingdom