Improving Mental Health for Stem Cell Transplant Caregivers

Caregivers of patients undergoing stem cell transplants experience significant deterioration in their quality of life, mood symptoms such as depression, anxiety, and psychological distress. This is due to the demanding nature of caregiving during an intensive period, including hospitalization, intense conditioning therapies, prolonged hospital stays, and complex medication regimens after discharge, all while the patient's immune system is compromised. These caregivers, often family and friends, become the primary point persons and are at high risk for poor mental health outcomes.

“These designated primary caregivers, family and friends, step in to really be that primary point person. We wanted to be able to support them, because we have a good understanding now of the ways in which they're at risk for their own poor mental health outcomes during this time,” said Jamie Jacobs, PhD, Department of Psychiatry, Mass General Brigham and Harvard Medical School, said in an interview with Targeted Oncology.

The initial intervention was a clinician-delivered program called BMT-CARE, provided one-on-one by a licensed, trained clinician before, during, and after the transplant. While it showed positive results, including improved caregiver quality of life and reduced caregiving burden, it was difficult for caregivers to engage due to the need for prescheduled in-person or Zoom appointments, adding an overwhelming burden.

“[Caregivers] shared with us that it was a little bit overwhelming to have another appointment on the books. So, we wanted to figure out a way that we could really have caregivers reap the benefit of these interventions but in a more feasible way,” Jacobs explained.

To overcome the limitations of the clinician-delivered BMT-CARE, the researchers translated the intervention into a self-guided digital mobile application, retaining all the original content. This app allowed users to engage with the evidence-based content at their convenience, in their own homes, when it was most needed, and without the burden of prescheduled sessions. This digital platform aimed to maximize accessibility and scalability of the intervention.

The study was a randomized controlled trial. Researchers enrolled 125 family and friend caregivers of patients undergoing hematopoietic stem cell transplantation at the Mass General Cancer Center. Participants were randomly assigned to either receive the BMT-CARE app, preloaded on a study-loaned iPad, or to a usual care control group, where they met once with a transplant social worker. The study measured outcomes such as quality of life, caregiving burden, depression, anxiety, post-traumatic stress symptoms, coping ability, and self-efficacy.

At 60 days posttransplant, the primary outcome, caregivers in the BMT-CARE app group reported significantly better quality of life compared to the usual care group, exceeding the clinically meaningful difference of 5 points (with a difference of 6.4 points). They also experienced less caregiving burden, fewer depression symptoms, fewer post-traumatic stress symptoms, and a better ability to cope with stress. There was no significant difference in anxiety symptoms at this time point.

Beyond the 60-day mark, longitudinal analyses at approximately 100 days posttransplant revealed that those in the BMT-CARE app group showed improvements in self-efficacy, indicating increased confidence in their ability to cope with caregiving tasks and responsibilities over time.

Notably, Jacobs explained that there was very high engagement with the app itself. This was interesting, as apps typically have high dropout rates, and it can be challenging to get users to continue on an app for more than a few days.

“We actually had caregivers using this app for a little over 2 hours, and each module was about 10 to 15 minutes, and there were 5 required modules total. So, the fact that they were so engaged with the app over time is notable that even a brief and self-guided, evidence-based intervention can improve quality of life and reduce burden and improve mood symptoms for these family and friend caregivers,” Jacobs said.

The research highlights that even a brief, self-guided, evidence-based digital intervention like the BMT-CARE app can significantly improve caregiver quality of life, reduce burden, and improve mood symptoms. The high engagement with the app, despite common app dropout rates, suggests its feasibility and potential for scalability. This intervention offers a valuable alternative for caregivers who cannot participate in one-on-one clinician interactions. Furthermore, improving caregiver outcomes could have downstream positive effects on patient outcomes, given the interdependence of caregiver and patient distress.

“We know that caregiver and patient distress is highly interdependent, so something that might help caregivers could also, in turn, help patients,” said Jacobs.

The researchers plan to conduct a multisite randomized trial involving several cancer centers to increase the demographic and geographic diversity of the caregiving sample, aiming to ensure the generalizability of these findings. This larger trial will also help understand how to scale and disseminate such an intervention in clinical settings. Additionally, they are interested in identifying the "active ingredients" of the intervention, with prior work suggesting that increases in coping and improvements in self-efficacy are key drivers of the observed effects.

REFERENCE:

Jacobs J, Freese M, Barata A, et al. Psychosocial digital application for caregivers of patients undergoing hematopoietic stem cell transplantation (HSCT): A randomized controlled trial. J Clin Oncol. Volume 43, Number 16_suppl. doi: 10.1200/JCO.2025.43.16_suppl.11000.