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

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-Caregiver^TM (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.

Figure 1 –

Consort Diagram