Digital App Improves Quality of Life for Caregivers of Patients Undergoing HSCT
Key findings
- Researchers at Mass General Brigham Cancer Institute have developed a digital application, the BMT-CARE App, for education and psychosocial support of family and friend caregivers of patients undergoing hematopoietic stem cell transplantation (HSCT)
- The BMT-CARE App was compared with usual care (contact with a social worker and referrals as needed) in 125 caregivers participating in a randomized controlled trial
- By day 60 post-HSCT, the BMT-CARE App showed significantly greater improvements in quality of life, significantly less caregiver burden, and significantly fewer depression and PTSD symptoms than the control group
- Trial participants who used the BMT-CARE App rated its usability as 82.5 on a scale of 0–100, a score predefined as indicating excellent usability
- These findings support testing generalizability and scalability of the BMT-CARE App in a multicenter study with a diverse HSCT caregiver population
Caregivers of patients with hematologic malignancies who undergo hematopoietic stem-cell transplantation (HSCT) have to help their family member or friend through lengthy hospital stays and severe toxicities, then help them manage ongoing physical symptoms, frequent outpatient appointments, and medication regimens. These burdens significantly disrupt caregivers’ employment, household responsibilities, and personal lives, which can profoundly impair quality of life (QOL) and result in substantial psychological distress.
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In a previous randomized controlled trial, Jamie M. Jacobs, PhD, Areej El-Jawahri, MD, and colleagues found that BMT-CARE, a novel clinician-delivered psychosocial intervention for caregivers of HSCT recipients, led to statistically greater improvements in caregivers’ QOL, caregiving burden, and psychological distress compared with usual care. Dr. Jacobs is program director of the Center for Psychiatric Oncology and Behavioral Sciences and director of caregiving research in the Cancer Outcomes Research and Education Program at Mass General Brigham Cancer Institute. Dr. El-Jawahri is the co-director of Cancer Outcomes Research and Education Program.
In hopes of making caregiver support more accessible, Drs. Jacobs, El-Jawahri, and colleagues created a digital application derived from the clinician-delivered program. In the Journal of Clinical Oncology, they report that the BMT-CARE App was similarly effective.
About the App
The self-administered BMT-CARE App incorporates five sequential modules that align with the patient’s transplant course. Each takes approximately 10 to 15 minutes to complete, and caregivers work through them at their own pace, from about 1 to 2 weeks before HSCT to 60 days post-HSCT (day 0 = stem cell infusion day). An optional sixth module offers additional resources and a review of key domains and skills.
The content combines information about transplant with evidence-based cognitive–behavioral, coping, and stress management techniques. The app makes use of educational games, caregiver and clinician videos, and guided mindfulness exercises.
Methods
The research team’s unblinded randomized controlled trial of the BMT-CARE App included 125 caregivers, enrolled between February 2023 and July 2024 at the Cancer Institute. The median age was 59 years (range, 28–79 years). Most participants were female (69%), married to the patient (71%), and caring for a patient undergoing allogeneic transplantation with reduced-intensity conditioning.
Stratified by transplant type (autologous vs. allogeneic), participants were randomly assigned 1:1 to:
- The BMT-CARE App—Participants were given a tablet computer with the app already downloaded. They could request technical support throughout the trial. Reminders to complete modules were pushed biweekly.
- Usual Care—Participants met with a transplant social worker alongside the patient once before HSCT to address any concerns. They could continue to access social work services throughout the trial as needed. Social workers could refer caregivers to external supportive care services.
Participants completed a baseline assessment, then repeated the following self-report measures on days 10, 60, and 100 after HSCT:
- CareGiver Oncology Quality of Life (CarGOQOL) questionnaire (score range 0–100), the primary outcome measure
- Caregiver Reaction Assessment, which assesses burden across five domains
- Hospital Anxiety and Depression Scale
- Post-traumatic Stress Disorder (PTSD) Checklist
- Measure of Current Status–Part A, which assesses coping skills
- Cancer Self-Efficacy Scale–transplant
At day 60, participants in the BMT-CARE App group also completed a system usability scale (score range 0–100), with a score >80 predefined as indicating excellent usability.
App Engagement and Usability
Caregivers assigned to the BMT-CARE App group spent a median of 147 minutes (range, 0–385 minutes) using it. At day 60 after HSCT, they reported a median app usability score of 82.5 (range, 40–100), indicating excellent usability.
Caregiver-reported Outcomes
At day 60 after HSCT, the BMT-CARE app group reported:
- Significantly better QOL scores than the usual care group (adjusted means, 76.3 vs. 69.9, P=0.007); the difference of 6.4 points exceeded the 5-point minimum clinically important difference (MCID) on the CarGOQOL
- Significantly better coping skills and significantly lower caregiving burden, depression, and PTSD symptoms than the usual care group; differences in depression and PTSD symptoms exceeded the MCID on the respective scales
- Similar anxiety symptoms and scores of self-efficacy for caregiving
Longitudinal Analyses
Across all time points, the BMT-CARE App group reported significantly greater improvements in QOL, lower caregiving burden, and fewer depression and PTSD symptoms than the usual care group. The app group also reported significantly greater improvement in coping skills and self-efficacy. Change over time in anxiety symptoms did not significantly differ between the two groups.
Improving the Availability of Caregiver Support
A digital application allows caregivers to access support at any time and location, potentially increasing the number of caregivers who receive support. Unfortunately, only one-third of digital interventions for cancer caregivers address psychosocial outcomes. Furthermore, most are telephone- or video-based, lack grounding in empirical evidence about behavior change, and are not specifically designed to enhance usability.
Dr. Jacobs and colleagues plan to test the BMT-CARE App with a diverse sample in a multicenter study to determine its generalizability and scalability.
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