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Cited by 54Cancer survivorship and careHealth Policy Implementation ScienceEthics in Clinical Research

The Challenges of Enrollment and Retention: A Systematic Review of Psychosocial Behavioral Interventions for Patients With Cancer and Their Family Caregivers

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Song, Lixin, Qan'ir, Yousef, Guan, Ting, Guo, Peiran, Xu, Shenmeng, Jung, Ahrang, Idiagbonya, Eno, Song, Fengyu +1 more·2021·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2021.04.019PMC PMC8419067
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Abstract

Context Psychosocial behavioral interventions (PBIs) that target patients with cancer and their caregivers face challenges in participant enrollment and retention. Objectives 1) Describe characteristics of the patient-caregiver PBI studies; 2) examine participant enrollment and retention rates; 3) identify factors influencing participant enrollment and retention rates; and 4) explore the strategies to promote enrollment and retention rates. Methods We identified randomized controlled trials that tested PBIs among adult patients with cancer and caregivers in five electronic databases. We conducted narrative and quantitative analyses to synthesize our findings. Results Among 55 qualified studies reviewed, most tested the efficacy of PBIs (n = 42) and used two study arms (n = 48). In-person meeting was the most common PBI delivery mode. The primary outcomes included quality of life, physical health, and symptoms. The average of enrollment rates of patient-caregiver dyads was 33% across studies (range 8%-100%; median = 23%). The average retention rate at the end of follow-ups was 69% (range 16%-100%; median = 70%). The number of study arms, recruitment method, type of patient-caregiver relationship, and intervention duration influenced enrollment rates. Study design (efficacy vs. pilot), follow-up duration, mode of delivery, type of relationship, and intervention duration influenced retention rates. Sixteen studies reported retention strategies, including providing money/gift cards upon study completion and/or after follow-up survey, and excluding patients with advanced cancer. Conclusion Researchers need to incorporate effective strategies to optimize enrollment and retention in patient-caregiver PBI trials. Researchers need to report detailed study processes and PBI information to improve research transparency and increase consistency.

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  • Our lower enrollment rate is consistent with other cancer caregiving trials, reflecting the challenge of recruiting cancer caregivers during a period of high emotional and logistical demands.

    “Our lower enrollment rate is consistent with other cancer caregiving trials,46 reflecting the challenge of recruiting cancer caregivers during a period of high emotional and logistical demands.”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [46]

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Authors
Song, L., Qan'ir, Y., Guan, T., Guo, P., Xu, S., Jung, A., Idiagbonya, E., Song, F., & Kent, E. E.
Affiliations
  • University of North Carolina at Chapel Hill (US)
  • West Coast University (US)
Corresponding author
Song, Lixin
ORCID
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2021-09
Volume
62
Issue
3
Pages
e279-e304
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2021.04.019
PMC
PMC8419067
OpenAlex
W3159679063
Cited by
54
References
116
Citations by year
2026: 10 · 2025: 18 · 2024: 8 · 2023: 9 · 2022: 7 · 2021: 2
FWCI
0.79
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institutes of Health
Topics
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Keywords
cancer patients, family caregivers, participant enrollment, participant retention, patient-caregiver dyads, retention strategies, intervention delivery mode, research transparency, quality of life, advanced cancer
MeSH terms
Adult, Behavior Therapy, Humans, Neoplasms, Quality of Life, Surveys and Questionnaires, Randomized Controlled Trials as Topic, Caregivers

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