Funded Projects

The Financial Burden of Kidney Transplantation

Project Year

2023

City & State

Boston, Massachusetts

Program Name

CATCH Implementation

Topic

Access/Barriers to Health Care (LHI)

Program Description

The problem: There are currently around 1100 children with end stage kidney disease (ESKD) awaiting a kidney transplant in the US. Almost all of them will qualify for Medicare coverage once they start dialysis or receive a transplant. However, Medicare only provides coverage for 80% of costs incurred in the kidney transplant evaluation, surgery, and post-operative recovery for up to 3 years following transplant. This leaves a coverage gap that would normally have to be supplemented by Medicaid or private insurance plans that vary widely in their coverage limits and eligibility requirements. The problem is further compounded for children with ESKD not requiring dialysis yet as they would not qualify for Medicare. Many children receive their kidney transplant from a caregiver in the same household with 330 living donor “parents” reported in 2022. Limited protections for the financial security of living donors negatively impact the recipient household. In addition, coverage exclusions related to lodging, transportation, meals, and lost wages incurred in the kidney transplant evaluation and recovery phase place undue financial burden that negatively impact the well-being of those families. Historically, Black children have fared worse than other racial groups in access to and outcomes following kidney transplantation placing them at an even greater risk to suffer the negative repercussions of this undue financial burden. Primary Setting: This implementation pilot project will involve communities served by 3 major tertiary Children’s Hospitals in the states of Massachusetts, Pennsylvania, and Louisiana. Number of Children Affected: As of January 2023, there were 102 children waiting for a kidney transplant in MA, PA, and LA. In addition, 19 blood related parents were reported as living kidney donors for their children in 2022 in those 3 states. Many more families have been referred for kidney donation and transplantation but are not yet listed. Through partnership with local physician champions in each state and the local state chapters of the National Kidney Foundation, we will identify a representative sample of those families to engage in our discovery phase. Project goal: To describe the financial burden incurred by families undergoing the kidney transplantation process both as potential living donors and as caregivers of children with ESKD, and identify healthcare coverage gaps to inform the development of a financial toolkit of available community resources. We will use the data obtained to provide information to legislators to help inform policy changes since the findings will fill a tremendous gap in knowledge. Proposed Intervention: The project will include 3 phases; phase 1 will leverage the local physician champions and state chapters of the National Kidney Foundation to recruit a diverse representative sample that includes the following groups: families undergoing kidney transplant evaluation, families at various time points following successful kidney transplantation, and living kidney donors. The participants will complete a financial burden survey with emphasis on out-of-pocket expenses, and impact on quality of life. Phase 2 will involve focus groups of a sample of families from phase 1 along with local National Kidney Foundation representatives to share lived experiences and exchange resource recommendations and generate the financial toolkit. Phase 3 will focus on dissemination of the toolkit with support from the national Improving Renal Outcomes Collaborative, and providing information to legislators to help inform policy changes through generation of advocacy talking points and publications. Anticipated Outcomes: Development of a comprehensive financial resources toolkit for wide dissemination to families of children with ESKD. The information gleaned on coverage gaps will be used to develop a one pager talking points document for use in future legislative advocacy efforts to improve healthcare coverage for children with ESKD.

Project Goal

The goal of this pilot project is to describe the financial burden incurred by families undergoing the kidney transplantation process both as potential living donors and as caregivers of children with ESKD, and identify healthcare coverage gaps to inform the development of a financial toolkit of available community resources. The extracted themes will be used to provide information to legislators to help inform policy changes related to Medicare coverage. Methods of dissemination may include a one-page advocacy tool, talking points for partner organizations, as well as a publication to report results.

Project Objective 1

By September 2023, the project collaborators in the 3 states (MA, PA, and LA) will recruit 30 patients/ families referred/ undergoing evaluation for a kidney transplant, another 30 patients at various time points following kidney transplant, and 20 caregivers who have donated a kidney to their child, to complete a comprehensive survey regarding the financial burden of kidney transplantation with emphasis on out-of-pocket expenses, and impact on quality of life.

Project Objective 2

By December 2023, the project collaborators in the 3 states (MA, PA, and LA) along with the representatives from the state chapters of the National Kidney Foundation will complete focus group interviews with 40 patients/families identified in Objective 1 to discuss lived experiences and exchange financial resources recommendations

Project Objective 3

By April 2024, the project collaborators will identify key themes/topics and content, formats (web page, app), and best ways to disseminate information to reach those who most need it. This will include generation of a financial resources toolkit and advocacy talking points handout to share with the Improving Renal Outcomes Collaborative and the American Society of Pediatric Nephrology for large scale dissemination.

AAP District

District I

Institutional Name

Boston Children's Hospital

Contact 1

Isa Ashoor