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Evidence-Based Practice Statement

Transplant Families is a nonprofit organization dedicated to improving the lives of pediatric transplant recipients, their families, and caregivers. Our programs are rooted in nationally recognized best practices, peer-reviewed research, and continuous evaluation to ensure that the support we provide is impactful and evidence-based.

Definition of Evidence-Based Practice

For Transplant Families, “evidence-based” means that our programs:

  • Are informed by peer-reviewed research and national guidelines from recognized authorities such as the U.S. Health Resources & Services Administration (HRSA), Organ Procurement and Transplantation Network (OPTN), United Network for Organ Sharing (UNOS), and the National Institutes of Health (NIH).

  • Integrate validated tools and methods shown to improve caregiver well-being, treatment adherence, and patient quality of life.

  • Are evaluated using measurable outcomes and adjusted through ongoing quality improvement processes.

Research Base and National Guidelines

Our approaches align with a substantial body of evidence demonstrating that:

  • Peer-to-peer mentoring and caregiver support groups improve mental health, resilience, and coping skills for caregivers of children with chronic or life-threatening illness (Hoey et al., 2008; Kent et al., 2013).

  • Family-centered care improves patient adherence, reduces stress, and supports better long-term health outcomes (Kuhlthau et al., 2011).

  • Early provision of practical resources during the transplant process decreases hospital readmission rates and improves family stability (Browne et al., 2020).

Logic Model / Theory of Change

Inputs

Trained volunteers, hospital partnerships, research-backed materials

Activities

Caregiver Connect peer mentoring; Pediatric Transplant Families Network calls; Totes for Hope hospital welcome kits

Outputs

5,000 families served; 20,000 volunteer hours; 68 hospital partners; 120 community partners

Outcomes

Short-term: Reduced caregiver stress, improved access to resources. Long-term: Improved treatment adherence, reduced caregiver burnout, enhanced patient quality of life.

Validated Tools and Practices Used

  • Needs assessment surveys based on validated family support scales.

  • Structured peer mentoring guidelines adapted from established chronic illness support frameworks.

Program Outcome Highlights (Example 2024 data)

  • 92% of Caregiver Connect participants reported improved confidence in managing their child’s care.

  • 87% of families receiving Totes for Hope kits reported feeling “more prepared” for the transplant journey.

  • Pediatric Transplant Families Network representation expanded to 38 states, strengthening geographic-specific resource sharing.

Partnerships and Evaluation

We partner with pediatric transplant centers, social workers, and hospital family resource programs to evaluate impact and refine programming. Our evaluation framework includes annual surveys, focus groups, and collaboration with medical and social science researchers to ensure alignment with emerging best practices.

Commitment to Continuous Improvement

Transplant Families uses ongoing data collection and literature review to adapt services to evolving evidence. This ensures that our programs remain effective, culturally responsive, and aligned with the highest standards of pediatric transplant care and caregiver support.

Selected Publications & Research Contributions

Peer-Reviewed & Scholarly Works

  1. Perito, E. R., McQueen, M., Lau, J., Krise-Confair, C., Hillenburg, J. P., Mazariegos, G., & Squires, J. E. (2024). Patient-centered research in pediatric transplant: Engaging families and recipients. American Journal of Transplantation, 24(5), 857–864.

  2. ACTION & PHTS Telehealth Working Group (including McQueen, M.). (2023). Successful implementation of telehealth visits in the paediatric heart failure and heart transplant population. Cardiology in the Young, 33(7), 1234–1242.

  3. ACTION Learning Network (including McQueen, M.). (2023). Patient and parent-reported outcomes in paediatric ventricular assist device support: A multi-center ACTION learning network feasibility and pilot experience. Cardiology in the Young, 33(1), 115–123.

  4. Pediatric Transplantation Collaborative (including McQueen, M.). (2021). Pediatric Learning Health Networks in solid organ transplantation—Engaging all stakeholders to achieve health for children who require transplantation. Pediatric Transplantation, 25(6), e14021.

  5. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division. (2021). Exploring the State of the Science of Solid Organ Transplantation and Disability: Proceedings of a Workshop. Washington, DC: The National Academies Press.

Guides & Educational Materials
6. United Network for Organ Sharing. (2018). What Every Parent Needs to Know: Guide for Parents of Transplant Recipient Children.

Public Advocacy & Media Contributions
7. McQueen, M. (2023, May 21). A heart transplant saved my son’s life. Now, donor network that saved him is under attack. USA Today.
8. McQueen, M. (2023, Sept 5). There is a shortage of pediatric organ donors. Here’s what parents need to know. The Washington Post.

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