Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Randomized Controlled Trial
. 2024 Feb;33(2):e6301.
doi: 10.1002/pon.6301.

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care

Allison J Applebaum  1 , Elizabeth Schofield  1 , Amanda Kastrinos  1 , Rebecca Gebert  1 , Mia Behrens  1 , Morgan Loschiavo  1 , Kelly M Shaffer  2 , Marcia Levine  3 , Aimee Dannaoui  3 , Courtney Bellantoni  3 , Melissa F Miller  4 , Alexandra K Zaleta  4
Affiliations
Randomized Controlled Trial

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care

Allison J Applebaum et al. Psychooncology. 2024 Feb.

Abstract

Objective: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-CaregiverTM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials).

Method: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews.

Results: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care.

Conclusions: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes.

Keywords: cancer; distress screening; family caregivers; oncology; psycho-oncology; psychosocial; referral; unmet needs.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest

Dr. Applebaum receives support from Blue Note Therapeutics and Beigene

Dr. Zaleta reports previous institutional research grants from Astellas Pharma, Boston Scientific Foundation, Novartis, Seagen; advisory funding from BeiGene, Bristol Myers Squibb; all funds were directed to Cancer Support Community.

Dr. Miller reports institutional research grants from Astellas Pharma, BeiGene, Bristol-Myers Squibb, Genentech (a member of the Roche Group), Geron, Gilead Sciences, GlaxoSmithKline, Janssen Pharmaceuticals/Janssen Oncology, Merck, Novartis, Pfizer, Seagen, Taiho Oncology, and Takeda Oncology.

Dr. Schofield, Ms. Gebert, Ms. Behrens, Ms. Loschiavo, Dr. Shaffer, Ms. Levin, Ms. Dannaoui and Ms. Bellantoni report nothing to disclose.

Figures

Figure 1 –
Figure 1 –
Consort Diagram
See this image and copyright information in PMC

References

    1. Kent EE, Mollica MA, Buckenmaier S, Wilder Smith A. The Characteristics of Informal Cancer Caregivers in the United States. Seminars in Oncology Nursing. 2019;35(4):328–332. - PubMed
    1. What Is a Cancer Caregiver? 2023; https://www.cancer.org/treatment/caregivers/what-a-caregiver-does/who-an.... Accessed April 16, 2023.
    1. Kent EE, Ornstein KA, Dionne-Odom JN. The Family Caregiving Crisis Meets an Actual Pandemic. J Pain Symptom Manage. 2020;60(1):e66–e69. - PMC - PubMed
    1. Buyck JF, Ankri J, Dugravot A, et al. Informal caregiving and the risk for coronary heart disease: the Whitehall II study. J Gerontol A Biol Sci Med Sci. 2013;68(10):1316–1323. - PMC - PubMed
    1. Christakis NA, Allison PD. Mortality after the hospitalization of a spouse. N Engl J Med. 2006;354(7):719–730. - PubMed

Publication types