The Care Coordination Program is designed to provide comprehensive, personalized support to pediatric patients with chronic conditions such as chronic kidney disease (CKD), end-stage renal disease (ESRD), and pediatric patients awaiting transplant. Pediatric patients with advanced chronic kidney disease are patients who will need some renal replacement therapy (dialysis or kidney transplant).
These services are provided within the University Pediatric Hospital and the Transplant Center of the Auxilio Mutuo Hospital, providing continuous care in the pre-transplant, transplant and post-transplant process for both patients and their families in a familiar and specialized environment.
Before the start of the program in 2020, an average of one pediatric kidney transplant was performed per year. Since its implementation, the number of transplants has increased significantly, reaching a total of 13 successful transplants in children.
Soon, we will also begin supporting pediatric patients at University Children's Hospital and their families in coordinating heart and liver transplant services.
Patient Care Coordinator
Services We Offer:
Health Care Coordination
• Medical Appointment Management: We organize and coordinate appointments with specialists, dialysis services, studies or other necessary treatments inside and outside
the hospital.
• Transportation is also coordinated to ensure that patients can attend all their appointments without difficulties.
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• Transition from Pediatric to Adult Care: We help young adults with kidney conditions plan their transition from pediatric to adult care, ensuring a smooth and seamless process.
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Continuity of Health Care Support
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• Progress Tracking: We continuously monitor patient progress within the hospital to ensure care plans are effective, collaborating as needed.
• Comprehensive Communication: We facilitate communication between the various specialists inside and outside the hospital, ensuring that all the patient's medical information is coordinated and available to the medical team.
Education and Preparation for Self-Management
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• Personalized Guidance: We offer guidance to families and caregivers about resources available in the hospital and in the community, providing detailed information about support services.
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Connection to Community Resources
• Access to Outside Services: We coordinate community resources that can support the treatment and well-being of children in and out of the hospital.
• Health Insurance Support: We help families identify working medical providers and health services. If this is not possible, we identify help within the community.
• We remain in constant communication with health plans to ensure that they are authorized and the patient can receive medically recommended services.
• We monitor it so that patients' eligibility with their medical coverage is not interrupted.
Customized Planning and Monitoring​
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• Individualized Care Plan: We develop care plans in collaboration with physicians, specialists, and caregivers, ensuring that all patient needs are met.
• Ongoing Assessment: We closely monitor the progress of the care plan, documenting the results and making adjustments when necessary to improve patient health outcomes.
• Barrier and social determinants: Barriers and social determinants are identified and managed so that there is no interruption in the service and in the established goals.
• Service Coordination: Services are coordinated for comorbid conditions
related to CKD
• Studies and Evaluations: We make sure that patients have their studies and evaluations with their current specialists.
Emotional and Recreational Support Activities
• Emotional well-being is just as important as medical treatment, especially for patients receiving dialysis or prolonged kidney treatment. In conjunction with the Department of Social Work, Child Life Program (emotional support) and the Renal Council of Puerto Rico, we offer emotional support and recreational activities designed to provide support, moments of relief and entertainment to both patients and their families during their stay in the renal unit.
• Activities are coordinated or hospital staff and patient caregivers to support, value and recognize the work they do on a daily basis.
• You are provided with tools to manage stress, anxiety, or any discomfort that the process of adjustment and development of the condition may cause, including the process of loss that generates emotional impact.
• The Care Coordinator is the patient's ally to navigate our fragmented health system and achieve appointments, referrals and studies in the shortest possible time, making it possible to complete their pre- and post-kidney transplant evaluations.
Testimonies:
"The Care Coordinator is the patient's ally to navigate our fragmented health system and achieve appointments, referrals and studies in the shortest possible time, making it possible to complete their pre- and post-kidney transplant evaluations."
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-Marta Suarez, MD MPH, Medical Director of the Renal Center & Associate Medical Director of the University Pediatric Hospital