Common Issues for Pediatric Organ Transplantation Patients
A life care plan for pediatric patients undergoing organ transplantation is important to realize the full scope of the costs and common associated risks.
Dramatic improvements in graft and patient survival rates has increased within the past 10 years. Improvements in immunosuppressive medications has also enhanced organ transplants.
Children awaiting transplants share some common issues: They are chronically ill, face a dramatic shortage of donated organs; they encounter a complex battery of medical and social testing to determine their candidacy.
Criteria and Evaluation for Organ Transplantation
- Acute (not treatable) or chronic infection
- Sever irreversible disease of organ systems
- Active substance abuse
- Significant history of noncompliance
- Inability of the patient or caregiver to adhere to complex medical regime
- Inadequate financial resources for post-transplant immunosuppressive medications
Medicare and United Network for Organ Sharing (UNOS) set the standards
Pediatric Renal Transplantation
End-stage renal disease (ESRD) United States Renal Data System (USRDS) has gathered millions of patient records to track treatment modalities over time and summarizes patient status and hospitalization; (NIDDK) U.S. organ procurement and transplant network and scientific register of transplant recipient (OPTN/SRTR) provides the most comprehensive and up to date statistical information concerning organ transplants in the U.S. Life Care Planner use this data to develop Life Care Plans.
The magnitude of the disease in terms of people affected and cost as reported in the (USRDS) is renal disease affects 27 million Americans and accounts for 24% of Medicare costs. The number of people with end stage kidney disease is increasing in size and cost.
Over 100,000 candidates are registered on the National waiting list for organ transplants. Approximately 80,000 are waiting for a kidney. The most common primary diagnoses in pediatric renal failure are:
- Aplastic, hypoplastic dysplastic kidneys (15.9%) kidney is smaller than usual because it is not fully developed while baby is growing in womb.
- Obstructive Uropathy (15.6%) urine cannot drain through ureter to the bladder
- Focal segmental glomerulosclerosis (FSGS) (11.7%) kidney filter – scarred
- Reflux nephropathy (5.2%) due to urine flowing backward (reflex) from the bladder towards the kidneys
- Chronic glomerulonephritis (3.3%) inflammation of tiny filters
- Other diagnoses (less than 3% presentation of each above)
- Unknown (6.2%)
The five most prevalent diagnosis in children identified above vary among children of different races:
- For Blacks FSGS is the most prevalent (23.1%)
- Whites – obstructive uropathy is the most prevalent (17.0%)
- Hispanic children similar to whites although a higher incidence of chronic glomerulonephritis (5.4%) than either whites (2.5%) or black children (3.7%) [NAPRTCS 2008]
Living donation is preferred not only because of a significant waiting time but also because living donation yields approximately 90% 5 year graft survival rate compared to 80% for cadaveric kidney grafts.
No more than 3 kidney transplants will occur over the course of most patients life, some rarely have received more.
Transplant between the ages of 0 and 14 has a remaining life expectancy of 52.6 years, while a male who receives a transplant between the ages of 15 and 19 has a remaining life expectancy of 40.9 years compared to a remaining life expectancy of 70.9 and 61.6 respectively in the general population (USRDS, 2007)
Pediatric liver and intestinal transplantation most common causes”
- Biliary atresia – cells within liver produce liquid called bile
- Cholestatic liver disease – inflammation, destruction of bile ducts
- Inherited metabolic liver disease
- Chronic active hepatis- – inflammation of the liver
Congenital heart disease represent majority of pediatric transplants – 300 to 400 transplants are performed in the U.S. each year.
50-60 pediatric lung transplants are performed annually in the United States.
Children often struggle with low self-esteem stemming from these issues and fail to meet academic, social or other developmental milestones relative to their age-matched peers in the general population. Detailed information concerning waiting times are openly published for all most transplants.
Pediatric Life Care Plans involving Transplants have a complicated and structured need to support the patient fully. Considering the full life of the pediatric allows for correct and defendable funding for the child to provide needs related to the transplant for their full life. I have the Experience, Certifications, and Post Graduate Training to do the best job for your case.