Research with families facing cancer: the challenges of accrual and retention
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The purposes of this article are: (a) to describe and analyze the accrual and retention patterns in a longitudinal randomized clinical trial with prostate cancer patients and their partners, and (b) to discuss strategies that were used to overcome challenges in conducting this family-based study. Initially, 429 dyads were referred to the study. Of these, 166 were not enrolled due to refusal (n = 120) or ineligibility (n = 46), 21 of whom did not meet one or more of the inclusion criteria, and 25 of whom could not be reached within the 2-month window of eligibility. Of the 383 eligible dyads, 263 dyads were enrolled (enrollment rate of 68.7%). Accrual and retention patterns differed by research site, referral procedures, and phase of prostate cancer. The retention rate was very good with the majority of dyads (n = 218) completing all three follow-up assessments at 4, 8, and 12 months (82.9%).
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The study lacked extended follow-up.
“Limitations included a lack of extended follow-up, which is often complicated in the advanced cancer setting owing to poor patient prognosis and increased caregiving demands.41,42”
From Multisite Randomized Controlled Trial of CareSTEPS: A Supportive Care Intervention for the Family Caregivers of Patients With Advanced Lung Cancer (2024) · cites this paper as [42]
The Retention Outcomes and Retention Issues sections report substantially higher attrition among advanced-phase patients, chiefly because of death and illness progression. The paper also discusses demands of illness and treatment as reasons for attrition, but does not specifically establish increased caregiving demands as a cause of difficult follow-up in advanced cancer. The lack of extended follow-up is the citing study’s own stated limitation, not a finding attributed to this source. (LLM, conf=0.82)
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References 22 · Cited by 96
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- Authors
- Northouse, L. L., Rosset, T., Phillips, L., Mood, D., Schafenacker, A., & Kershaw, T.
- Affiliations
- University of Michigan (US)
- Wayne State University (US)
- Yale University (US)
- Corresponding author
- Northouse, Laurel L.
- Venue
- Research in Nursing & Health
- Publisher
- Wiley
- Published
- 2006-06
- Volume
- 29
- Issue
- 3
- Pages
- 199-211
- ISSN
- 0160-6891 (ISSN-L)
- 1098-240X
- OpenAlex
- W2056289632
- Cited by
- 96
- References
- 22
- Citations by year
- 2026: 2 · 2024: 2 · 2023: 6 · 2022: 2 · 2021: 4 · 2020: 3 · 2019: 2 · 2018: 8 · 2017: 5 · 2016: 1 · 2015: 7 · 2014: 7 · 2013: 3 · 2012: 3
- FWCI
- 9.00
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Locations
- Research in Nursing & Health (publishedVersion)
- PubMed (publishedVersion)
- Deep Blue (University of Michigan) (submittedVersion)
- Funders
- National Cancer Institute (R01CA090739)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
- Keywords
- prostate cancer, dyads, patient accrual, participant retention, randomized controlled trials, referral process, cancer partners, longitudinal study
- MeSH terms
- Attitude to Health, Cancer Care Facilities, Data Collection, Eligibility Determination, Family, Female, Humans, Longitudinal Studies, Male, Middle Aged, Motivation, Patient Dropouts, Prostatic Neoplasms, Quality of Life, Referral and Consultation, Research Design, Multicenter Studies as Topic, Nursing Methodology Research, Randomized Controlled Trials as Topic, Patient Selection
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