Research, recruitment and observational data collection in care homes: lessons from the PACE study

BMC Res Notes. 2019 Aug 14;12(1):508. doi: 10.1186/s13104-019-4543-2.


Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries.

Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study.

Keywords: Care home; Epidemiology; Long term care facility; Nursing home; Observational study; Palliative care.

Publication types

  • Multicenter Study

MeSH terms

  • Aged
  • Aged, 80 and over
  • Cross-Sectional Studies
  • Data Collection / methods
  • Data Collection / statistics & numerical data
  • Dementia / diagnosis
  • Dementia / mortality
  • Dementia / therapy*
  • Europe
  • Female
  • Homes for the Aged / statistics & numerical data*
  • Humans
  • Male
  • Nursing Homes / statistics & numerical data*
  • Palliative Care / methods
  • Palliative Care / statistics & numerical data*
  • Research Design
  • Survival Rate