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Barriers to Research Participant Retention in a Longitudinal Study of End-of-Life Decision Making

Schneider, Samantha BSN, RN; Kub, Joan K. PhD, RN; Hughes, Mark T. MD, MA; Texeira, Kenneth PhD; Sulmasy, Daniel P. MD, PhD; Astrow, Alan B. MD; Thompson, Richard E. MS, PhD; Clawson, Lora MSN, RN, CRNP; Nolan, Marie T. PhD, RN

Journal of Hospice & Palliative Nursing: May-June 2010 - Volume 12 - Issue 3 - p 177-183
doi: 10.1097/NJH.0b013e3181d76f5d

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 2 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.

Author Affiliations: Samantha Schneider, BSN, RN, is Nurse Clinician, Department of Pediatric Oncology, The Johns Hopkins Hospital, Baltimore, MD.

Joan K. Kub, PhD, RN, is Associate Professor, School of Nursing, Johns Hopkins University, Baltimore, MD.

Mark T. Hughes, MD, MA, is Assistant Professor of Medicine and Core Faculty, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.

Kenneth Texeira, PhD, is Adjunct Professor, Hunter College, Manhattan, NY and Research Coordinator, Maimonides Medical Center, Brooklyn, NY.

Daniel P. Sulmasy, MD, PhD, is Kilbride-Clinton Professor of Medicine and Ethics, Department of Medicine and Divinity School, The University of Chicago, IL.

Alan B. Astrow, MD, is Director, Division of Hematology/Medical Oncology, Department of Medicine, Maimonides Medical Center, Brooklyn, NY.

Richard E. Thompson, MS, PhD, is Associate Scientist, Department of Biostatistics, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD.

Lora Clawson, MSN, RN, CRNP, is Assistant Professor, Department of Neurology, Director of ALS Clinical & Research Services, School of Medicine, Johns Hopkins University, Baltimore, MD.

Marie T. Nolan, PhD, RN, is Associate Professor and Director of the PhD Program, School of Nursing, and a Core Faculty Member, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.

The authors acknowledge the financial support of the National Institute for Nursing Research at the National Institutes of Health (1 R01 NR005224-01A1), the ALS Research Center of Johns Hopkins University, and the Fan Fox and Leslie R. Samuels Foundation through a grant administrated by Partnership for Caring.

Address correspondence to Samantha Schneider, BSN, RN, 748 Beversrede Trail, West Chester, PA 19382 (

© 2010 The Hospice and Palliative Nurses Association