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Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research

Center for Health Services Research in Primary Care and Center for Palliative Care, Durham VA Medical Center and the Department of Medicine and Center for the Study of Aging and Human Development, Duke University, karen.steinhauser{at}duke.edu

Elizabeth C Clipp

Geriatric Research Education and Clinical Center, Durham VA Medical Center and Division of Geriatrics and School of Nursing and Center for the Study of Aging and Human Development, Duke University

Judith C Hays

School of Nursing and Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina

Maren Olsen

Center for Health Services Research in Primary Care, Durham VA Medical Center

Robert Arnold

Institute for Doctor-Patient Communication Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania

Nicholas A Christakis

Department of Health Care Policy, Harvard Medical School, Cambridge, Massaschusetts

Jennifer Hoff Lindquist

Center for Health Services Research in Primary Care, Durham VA Medical Center

James A Tulsky

Center for Health Services Research in Primary Care, Durham VA Medical Center and Center for Palliative Care, Durham VA Medical Center and the Department of Medicine and Center for the Study of Aging and Human Development and Institute on Care at the End of Life, Duke University, Durham, North Carolina

Background: In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions.

Objectives: To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers.

Design: A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEFB < 40 or advanced chronic obstructive pulmonary disease (COPD) pCO₂ > 46, and their caregivers, interviewed monthly for up to two years. Patients were identified using clinical and administrative databases from one geographic region.

Results: Representative and successful ascertainment was associated with use of clinical criteria and medical record review versus physician or other provider prognostication, use of recruitment letters from personal physician, recruitment letter content, brochure content, small monetary incentives, refined phone scripts, use of matched ethnicity interviewers, in-home and phone interview strategies, measure selection, patient and caregiver rapport, and on-going staff support (including grief and bereavement).

Conclusions: Recruitment to prospective longitudinal studies at the end of life is difficult, but possible. The lessons learned from this study are applicable to future investigators conducting prospective research.

Key Words: longitudinal • methodology • palliative care • recruiting

Palliative Medicine, Vol. 20, No. 8, 745-754 (2006)
DOI: 10.1177/0269216306073112


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