Annunziato RA, Jerson B, Seidel J, Glenwick DS. The psychosocial challenges of solid organ transplant recipients during childhood. Abstract: A large proportion of pediatric solid organ transplant recipients are young children, yet dedicated studies on the challenges faced by these patients are sparse. The present article aims to provide a summary of key considerations for pediatric solid organ transplant teams, describing what challenges are more likely for younger patients and how they might identify and address these circumstances. Our findings suggest that the mental health of patients and caregivers, issues at school, neurocognitive difficulties, and self-management are areas of particular relevance for children. We offer several recommendations that stem from these identified areas of concern. Dedicated focus on the well-being of younger patients could in the long-term stave off adverse events that are often associated with adolescence. In the short-term, certainly intervening in any of these domains could lead to improved quality of life during childhood.
[Show abstract][Hide abstract] ABSTRACT: Increased focus on the potential negative side effects of steroid usage in pediatric transplantation has led to steroid minimization or steroid-free transplantation. In this study, we report results after complete steroid avoidance in renal transplantation in the period 1994-2009. We evaluate the effects of complete steroid avoidance on allograft function, BMI, and linear growth. The majority of transplanted children were induced with antithymocyte globulin and immunosuppressed with a calcineurin inhibitor and mycophenolate mofetil. Steroids were given only when rejection occurred or due to comorbidities. Anthropometric data were collected from 65 transplantations in 60 children. Patient survival was 93%; graft survival was 81% after five yr (N = 42) and 63% after 10 yr (N = 16). Acute rejection within the first year of transplantation was 9%. The distribution of the children's BMI before transplantation was normal; the mean BMI-SDS was 0.21 before transplantation, and this value remained stable during the next five yr. Post-transplantation the children demonstrated significant improved growth as the mean height-SDS increased significantly from -1.7 to -1.1. Catch-up growth was most pronounced in the youngest (< six yr). Steroid-free immunosuppression in pediatric renal transplantation is safe and protects against steroid-induced obesity and short stature.
[Show abstract][Hide abstract] ABSTRACT: End-stage kidney disease (ESKD) may interfere with children's developmental task of acquiring autonomy and participation. The Skills for Growing Up tool encourages normal development towards independence and autonomy during paediatric rehabilitation. This study aimed to adapt this self-management tool for use in paediatric nephrology, and to test whether its use is feasible in daily practice.
A Delphi study was conducted among patients, their parents, professionals and experts to adjust the tool for use in nephrology. Feasibility was studied through individual and group interviews with professionals in all Dutch paediatric nephrology centres.
Agreement was reached on the areas of social participation and medical management of ESKD. Compared with the original, the new instrument holds considerable more attention for autonomy in the renal healthcare area; for example, dealing with medication and transplantation. Professionals used and appreciated the tool, but the paper form was seen to limit feasibility.
Making the tool available online is important. The challenge for professionals is to move beyond the focus on medical management and to consider developmental tasks when coaching their patients into adulthood.
The Skills for Growing Up-Nephrology (SGU-N) tool is a promising instrument for use by professionals in paediatric nephrology. Its use can help young people achieving autonomy and may contribute to their successful transition to adulthood and adult care.
Journal of Renal Care 06/2014; 40(2). DOI:10.1002/jorc.12046
[Show abstract][Hide abstract] ABSTRACT: 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.
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