Barriers to research participant retention in a longitudinal study of end-of-life decision making

Samantha Schneider, Joan K. Kub, Mark T. Hughes, Kenneth Texeira, Daniel P. Sulmasy, Alan B. Astrow, Richard E. Thompson, Lora Clawson, Marie T. Nolan

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


High attrition rates are a significant threat to the validity of longitudinal studies of end-of-life (EOL) care. The purpose of this study was to describe the attrition rate due to early death and the rate of home interviews required by patients and factors related to these two events. This descriptive comparative study was based on data from a longitudinal study of EOL decision making with a sample of 147 patients in the terminal phase of one of three diseases: amyotrophic lateral sclerosis, cancer, and congestive heart failure. Descriptive statistics summarized the rate of early death and requirement for home interview. χ Analysis and a t testing were used to explore relationships between patient characteristics and (1) early death and (2) the requirement for a home interview. Three months after the baseline interview, 19% of the patients had died, and 26% of the patients who were interviewed required a home interview. Overall, the percentage of patients completing a second interview was 58%. If patients who were interviewed at home had not been able to participate, the follow-up interview rate would have dropped to 43%. Patients who required a home interview had a significantly worse quality of life at baseline than those who did not need a home interview. Sample sizes adequate to offset expected attrition in patients with low quality of life, funding to support patient interviews in the home setting, and continued longitudinal studies are needed to increase our understanding of the quality of care across all care settings at the end of life.

Original languageEnglish (US)
Pages (from-to)177-183
Number of pages7
JournalJournal of Hospice and Palliative Nursing
Issue number3
StatePublished - May 2010


  • Attrition
  • End of life
  • Longitudinal
  • Retention

ASJC Scopus subject areas

  • Community and Home Care
  • Advanced and Specialized Nursing


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