Post‐transplant adjustment – The later years

Abstract

As survival rates for pediatric solid organ transplantation have continued to improve, researchers and health care providers have increasingly focused on understanding and enhancing the health related quality of life (HRQOL) and psychosocial functioning of their patients. This manuscript reviews the psychosocial functioning of pediatric transplant recipients during the “later years”, defined as more than 3 years post-transplant, and focuses on the day-to-day impact of living with a transplant after the immediate period of adjustment and early years after surgery. Key topics reviewed include health-related quality of life, cognitive functioning, impact on the family, regimen adherence, and transition of responsibility for self-management tasks. Overall, pediatric transplant recipients evidence impairment in HRQOL, neuropsychological outcomes, and family functioning as compared to non-transplant recipients. However, the degree of impairment is influenced by a variety of factors including, disease severity, age, solid organ type, and study methodologies. Studies are limited by small samples, cross-sectional design, and the lack of universal assessment battery to allow for comparisons across solid organ populations. Areas for future research are discussed.

Psychosocial functioning in pediatric heart transplant recipients and their families

“…While pediatric heart transplantation offers increased survival and improved physical functioning for many children with end‐stage heart failure, solid organ transplantation is a chronic condition, with long‐term risk for rejection, comorbid medical conditions (eg, kidney disease, diabetes, post‐transplant lymphoma), and eventual graft loss with potential need for retransplantation. Treatment demands are notable post‐heart transplant, with frequent need for biopsies, cardiac catheterizations, and daily medications . Results of the current study demonstrated that approximately 40% of pediatric heart transplant recipients and their families endorsed clinically meaningful levels of overall psychosocial risk, continuing well beyond the immediate post‐transplant period.…”

A systematic review of parent and family functioning in pediatric solid organ transplant populations

“…Rates of pediatric SOT have increased in prevalence over the last decade with 5‐year survival rates exceeding 75% across pediatric heart and liver transplant populations and >90% in pediatric kidney transplant populations . While SOT offers many children and adolescents increased quantity and quality of life, patients and families are faced with many stressors and burdens. During the pretransplant phase, patients and families may experience long waits due to the scarcity of donor organs available, financial challenges, stress on siblings and caregivers as roles and responsibilities shift, and complex medical regimens, all while the child remains seriously ill .…”

“…As Gold and colleagues described, parents state that they must “adapt to the new disease called organ transplant,” which is accompanied by risks of rejection, graft loss, need for re‐transplantation, and mortality. Beyond the stressors of the transplant course itself, children pre‐ and post‐SOT may have complex developmental and emotional needs, which can result in even greater strain on the family system …”

The importance of psychiatric support and treatment in a child with heart transplantation (tur)

“…Tüm bu zorluklar birey üzerinde stres yaratır (4). Bu aşamada nakledilen organın korunmasında en önemli faktörlerden birinin medikal tedaviye uyum olması sebebi ile buna ilişkin risk faktörlerinin belirlenmesi ve gerekli önlemlerin gecikmeksizin alınması çok önemlidir (5).…”