Transplant Centers Often Overlook Family Caregivers

Family caregivers provide crucial support to patients before and after a life-saving organ, stem cell, or bone marrow transplant. In recognition of the vital nature of this role, transplant centers often require patients to identify a dedicated caregiver to be considered a good transplant candidate.

Yet the current transplant system does not consistently provide caregivers with the education, training, and psychosocial supports they need to fulfill their role, according to a new report from the National Alliance for Caregiving’s Transplant Caregiving Project.

“Our goal with this report is to increase education, stimulate dialogue, and encourage the development of comprehensive solutions that address the challenges, burdens, and experiences of transplant caregivers,” the authors wrote.

Considering the Strain Placed on Caregivers

“The scope of the caregiver role is vast and time-consuming,” the report noted.

During the transplant journey, caregivers are often solely responsible for a host of tasks, ranging from care coordination and healthcare provider communication to symptom management and assistance with activities of daily living, while also serving as a key source of emotional support for their loved ones.

After transplant, their role shifts to providing more direct care, ensuring their family members can manage complex medication regimens, follow strict nutrition guidelines, and adhere to infection prevention protocols. Caregivers are also asked to closely monitor the patient for signs of organ rejection and illness.

This can come at a steep cost to the caregivers, who may experience financial strain and neglect their own health needs. The demands on their time, stress of the responsibility, and uncertainty about the outcome make transplant caregiving particularly mentally taxing, said report advisory committee member Camilla Nonterah, PhD, a transplant researcher and associate professor of health psychology at the University of Richmond in Richmond, Virginia. Consequently, transplant caregivers can experience “anxiety, depression, posttraumatic stress disorder, and high levels of stress even if they don’t have something that’s diagnosable,” she said.

Surveying Gaps in Caregiver Support

As part of their report, the National Alliance for Caregiving surveyed 114 transplant centers throughout the United States, about half of which were academic medical centers. The representative sample reflected differences in centers’ location, transplant type, and patients’ race/ethnicity and socioeconomic status.

The survey results showed notable variability in how transplant centers evaluate caregiver needs and provide support and services.

More than 40% of respondents reported that their centers did not have written procedures for assessing caregiver support needs or, if such documentation processes existed, that they were unaware of them. Only 32% of centers screen caregivers for signs of distress.

“This really underscores an absence of standardized assessment,” said Jason Resendez, president and chief executive officer of the National Alliance for Caregiving, adding that the process is also fragmented. A center might assess a caregiver’s needs only once, perhaps at the patient’s initial evaluation for transplant or if a patient misses an appointment.

“Without ongoing engagement with the family caregiver and adequate assessments, it’s hard to identify their most critical needs,” Resendez said.

Although most centers offered support programs for caregivers, 30% had none. In addition, across centers there was little consistency in the types of support provided: 38% of transplant centers offer caregivers group psychosocial therapy, 35% individual therapy, 34% a peer mentoring program, and 31% financial counseling.

Just 58% of centers reported offering caregiver-specific training and education, most often focused on medical aspects of the transplant process. Yet such training and education greatly increases the chances that patients will experience optimal outcomes, said Anuradha Lala, MD, the director of heart failure research at Mount Sinai Fuster Heart Hospital in New York City, who served on the survey’s review committee.

Lala noted that after heart transplantation, patients must take a daily regimen of immunosuppressive medications that raise the risk for opportunist infections and have side effects that can affect cognition and mood.

“We won’t discharge our patients until their support systems have been educated” about what to look out for and when to call the medical team, she said.

Survey results also revealed that the provision of support services to family caregivers varied across racial, ethnic, and socioeconomic lines.

“For example, group psychosocial programs, financial counseling, and complementary health programs are less available at centers serving primarily low-income populations, particularly Black/African American patients and their caregivers,” the authors reported.

Barriers and Recommendations

Lack of standardized practices is one barrier to consistently assessing and providing support, education, and training to caregivers across transplant centers, said Nonterah.

“Providers have a long list of things they have to do, and if something isn’t required or part of your standard practice, you’re probably not going to do it,” she said.

In addition, centers may not have the financial resources or staff to evaluate and support caregivers throughout the transplant process.

With such challenges in mind, the National Alliance for Caregiving report made six recommendations to improve transplant caregivers’ health and well-being.

One recommendation is for the Centers for Medicare & Medicaid Services to educate transplant centers about new billing codes for reimbursement of caregiver training on activities for daily living, which took effect in January 2024. Although 80% of transplant centers are aware of the new billing codes, only 7% of survey respondents said their centers are actively using them.

Next January, those billing codes will expand to include training caregivers in direct care, such as moving someone from a bed to a bath, managing medications, caring for wounds, and other nursing and medical tasks, said Resendez.

“We see this as a move in the right direction,” he said.

If transplant centers use these codes to increase reimbursement, then the rest of the report’s recommendations will be easier for them to implement, Resendez added.

The report’s additional recommendations included:

1. Implement a standard screening process to reduce bias and health inequities and to identify caregivers who need additional support early in the transplant journey.
2. Standardize the collection of caregiver data across transplant centers — perhaps in electronic health records — to assess and document caregiver needs.
3. Integrate dedicated caregiver coordinators, which over two thirds of centers reported having, within transplant teams.
4. Provide comprehensive, standardized, evidence-based caregiver support programs continuously before, during, and after transplantation.
5. Conduct research on the diverse needs of transplant caregivers from different demographic and socioeconomic backgrounds.

Lala added that obtaining more systemized data about caregiver needs would go some way toward addressing these barriers. Such data could then be used to conduct research into how effective support programs, education, and training are at impacting patient outcomes.

“You can justify things like a dedicated caregiver support coordinator only when you understand the extent to which it’s needed and [how] it will translate into outcomes for patients,” Lala said.

Barbara Mantel is an award-winning reporter and a core topic leader at the Association of Health Care Journalists.