Skip to content

NAC — Transplant Caregiver Disparities Brief (2025)

National Alliance for Caregiving. "The Family Caregiver Gap: Disparities and Missed Opportunities in Support Services Across U.S. Transplant Centers." August 2025. Third brief in the NAC Transplant Caregiving Collaborative.

Key findings used in wiki

Psychosocial risk profile for transplant caregivers

Drawing on the 2024 NAC transplant-center survey and the broader literature, the brief documents that transplant caregivers face heightened risk for:

  • Anxiety and depression — at rates that exceed general-population caregiver burden.
  • Loneliness and isolation — driven in part by the patient's impaired immunity requiring limited social contact for both patient and caregiver during extended recovery.
  • Post-traumatic stress — after acute complications, infections, or rejections.
  • Sleep disturbances and pain — physical strain compounded by 24/7 vigilance.
  • Reduced immune functioning — a biologically mediated consequence of prolonged caregiver stress.
  • Financial strain — often severe, often unrecognized in existing support systems.

Program-level insights

  • Varied program adoption across transplant centers — no standardization.
  • Moderate utilization with clear preferences — caregivers do use services where available, but patterns of uptake are shaped by format, language, and scheduling.
  • Limited caregiver needs assessment — most centers do not routinely screen caregivers for their own needs.
  • Disparities in access — caregivers from minoritized and lower-income communities disproportionately face program gaps.

Policy levers identified

The brief highlights specific mechanisms that could meaningfully shift practice:

  • CARE Act (Caregiver Advise, Record, Enable) — already requires healthcare systems to identify, document, and involve family caregivers; greater enforcement would improve baseline identification.
  • Medicare billing codes for caregiver training services (CTS) and for caregiver health risk assessments — concrete payment mechanisms that make caregiver-facing services financially viable for centers.
  • Standardized screening, caregiver coordinators, and evidence-based support programs across the transplant continuum.

Six recommendations to practice and policy

  1. Implement standardized screening during the transplant waitlist period to reduce bias.
  2. Collect and share standardized caregiver data to inform program design.
  3. Embed dedicated caregiver coordinators on transplant teams.
  4. Make caregiver support programs targeted, consistent, evidence-based, standardized, and continuous across care phases.
  5. Design support to address SDOH and tailor services to diverse caregiver needs.
  6. Increase awareness and adoption of Medicare CTS billing codes to bolster access to training and support.

Why it matters for the wiki

  • Provides the most recent (2025) citable evidence on transplant caregiver disparities and the specific reimbursement levers that exist today.
  • Supports the wiki's benefits layer by pointing at under-used Medicare billing codes that convert caregiver support from an unreimbursed cost center into a reimbursable service.