The psychosocial challenges of solid organ transplant recipients during childhood

Parental functioning is essential to children's development. Therefore, this cross-sectional single-center study examined the prevalence of family strain in 181 parents and its associations to psychosocial functioning in their children after LT. Median age at LT was one yr. Mean time elapsed since LT was 5.8 yr. The IFS, and the SDQ were applied to parents. Family strain in the present sample was comparable to that in the German normative group of families with a chronically ill or disabled child, but families of LT recipients showed a significantly higher financial impact, impact on coping, and impact on siblings (p < 0.001). Younger age of patients at survey, a more severe clinical course, child's restrictions, and financial losses following LT were determined as significant predictors of family strain (R(2) = 0.42). Parents reported less family strain after living-related compared with deceased donation. Family strain was significantly correlated to psychosocial dysfunction in children post-LT. Present findings demonstrate a risk of maladjustment to the post-LT condition in families. They emphasize the importance of psychological assessment of parents and patients during transplant and follow-up to ensure the best achievable long-term outcome of patients.

Section: Discussionsupporting

confidence: 92%

Family strain and its relation to psychosocial dysfunction in children and adolescents after liver transplantation

Kaller

Petersen

Petermann

et al. 2014

“…Common measures used to assess children's psychological functioning include questionnaires such as the CBCL or more abbreviated measures such as the PSC . Research across solid organ transplant groups has demonstrated that children with poorer psychological functioning and higher levels of family dysfunction pretransplant tend to have poorer medical outcomes following transplantation . This increased risk of stress and related psychopathology is associated with poorer medical outcomes through a variety of mechanisms, but is thought to be primarily due to its relationship with poor adherence .…”

Section: Domains Of the Evaluationmentioning

confidence: 99%

Best practices in the pediatric pretransplant psychosocial evaluation

Lefkowitz

Fitzgerald

Zelikovsky

et al. 2014

Assessment of psychosocial functioning is an often-included component of the pretransplant evaluation process. This study reviews several domains of assessment that have been related to post-transplant outcomes across solid organ transplant populations. These include evaluation of patient and family past adherence, knowledge about the transplantation process, and their neurocognitive, psychological, and family functioning. To date, few comprehensive pretransplant evaluation measures have been standardized for use with children; however, several assessment measures used to evaluate the aforementioned domains are reviewed throughout the study. Additionally, this article discusses some developmental, illness-specific, and cultural considerations in conducting the psychosocial evaluation. We also discuss ethical issues specific to the pediatric psychosocial evaluation. Recommendations are advanced to promote a comprehensive evaluation that identifies family strengths and risk factors as they begin the transplant journey.

“…For example, in one study of renal transplant recipients, two of 26 children attended a special school purely due to hearing problems which developed after the transplant , supporting findings that high levels of tacrolimus can result in sudden hearing loss after transplant, with significant psychosocial and educational consequences . While a proportion of transplant recipients attend schools for children with learning disability or receive additional learning support, within mainstream schooling there is little in the literature describing the school experience for children and adolescents who have undergone transplantation . Furthermore, where research has been conducted, the focus has been on school re‐entry and the early years after transplant, with very little mention of the later years.…”

Section: Neuropsychological Effectsmentioning

confidence: 99%

Post‐transplant adjustment – The later years

Fredericks

Zelikovsky

Aujoulat

et al. 2014

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.