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

The process of pediatric solid organ transplantation (SOT) places new and increased stressors on patients and family members. Measures of family functioning may predict psychological and health outcomes for pediatric patients and their families, and provide opportunity for targeted intervention. This systematic review investigated parent and family functioning and factors associated with poorer functioning in the pediatric SOT population. Thirty‐seven studies were identified and reviewed. Studies featured a range of organ populations (eg, heart, liver, kidney, lung, intestine) at various stages in the transplant process. Findings highlighted that parents of pediatric SOT populations commonly report increased stress and mental health symptoms, including posttraumatic stress disorder. Pediatric SOT is also associated with increased family stress and burden throughout the transplant process. Measures of parent and family functioning were associated with several important health‐related factors, such as medication adherence, readiness for discharge, and number of hospitalizations. Overall, findings suggest that family stress and burden persists post‐transplant, and parent and family functioning is associated with health‐related factors in SOT, highlighting family‐level functioning as an important target for future intervention.     

Psychosocial predictors of medication non‐adherence in pediatric organ transplantation: A systematic review

Adherence to immunosuppressant medication is critical to health and quality‐of‐life outcomes for children who have received a solid organ transplant. Research on the psychological and social predictors of medication adherence is essential to the advancement of pretransplant assessments and transplant psychosocial services. Despite the importance of identifying risk factors, the literature remains limited regarding psychosocial predictors of non‐adherence. A systematic search was conducted to identify studies of the psychosocial predictors of post‐transplant medication non‐adherence in pediatric solid organ transplantation. From 1363 studies identified in searches of empirical literature, a final sample consisted of 54 publications representing 49 unique studies. Findings regarding psychosocial predictors were inconsistent with non‐adherence associated largely with adolescence, racial/ethnic minority status, and presence of mental health issues. Familial predictors of non‐adherence problems included single‐parent households, lower socioeconomic status, lower family cohesion, presence of family conflict, and poor family communication. Several studies reported an association between non‐adherence and social pressures (eg, peer social interaction, wanting to feel normal) among adolescent transplant recipients. While significant methodological and substantive gaps remain in this body of knowledge, this review synthesizes current evidence for assessment for transplant clinicians and researchers.     

Screening and support for emotional burdens of youth with type 1 diabetes: Strategies for diabetes care providers

Multiple sources of burden for youth with type 1 diabetes (T1D) impact key outcomes including quality of life, self‐management, and glycemic control. Professional diabetes organizations recommend diabetes care providers screen for psychosocial and behavioral challenges and implement strategies to support youth with T1D. The purpose of this article is to review the literature and recommend practical strategies medical providers can use for screening and behavioral support for youth with diabetes and their families. As part of their routine medical care, diabetes care providers are well‐positioned to identify and intervene to address emotional distress related to the burdens of living with diabetes. In collaboration with multidisciplinary team members, including psychologists and mental health professionals, medical providers may be able to successfully implement brief behavioral strategies for screening and providing emotional support.     

Factors influencing child mental health: A state‐wide survey of Victorian children

Aims: This study aims to estimate the prevalence of mental health problems among Victorian children and to investigate factors associated with poorer mental health. Method: Computer‐assisted telephone interviews were undertaken with the parents of 3370 randomly selected Victorian children aged 4 to 12 years. They reported on their child's mental health and special health‐care needs as well as their own mental health, family functioning and a range of community and socio‐demographic variables. Population estimates and odds ratios (OR) were calculated with 95% confidence intervals (95% CI). Results: Overall, 11.6% (95% CI = 10.3–12.9%) of Victorian children were estimated to be at risk of having mental health problems. Factors independently placing children at increased risk of mental health problems that were ‘of concern’ include a child having special health‐care needs (OR = 7.89, 95% CI 5.16 to 12.08), unhealthy family functioning (OR = 3.84, 95% CI 2.19 to 6.74), parental mental health problems (OR = 7.89, 95% CI 5.16 to 12.08), neighbourhood safety (OR = 2.47, 95% CI 1.20 to 5.07) and area of residence (OR = 2.01, 95% CI 1.33 to 3.02). Conclusions: A significant proportion of Victorian children are at some risk of mental health problems. These limited but important predictors of children's mental health reinforce the need for policy solutions that will extend beyond those offered by traditional mental health service systems.     

Understanding the pathway between the transplant experience and health-related quality of life outcomes in adolescents

Abstract:  Developments in solid organ transplantation have resulted in improved survival for children with advanced kidney, liver, and heart disease; however, concerns have been raised regarding the quality of life of survivors. This study examined HRQOL in adolescent transplant recipients. We examined the influence of demographic, treatment regimen, and family factors on physical and mental health domains of HRQOL. The current single-center investigation involved 68 solid organ transplant recipients and their parents. All families participated in a structured interview to collect information on demographics, characteristics of the adolescents' disease and treatment regimen, family functioning, and HRQOL for parents and adolescents. Using hierarchical regression analyses, predictive models of physical functioning and mental health outcomes for adolescent transplant recipients were developed for parent-proxy and adolescent self-report. Perceived frequency of medication side-effects and family conflict significantly contributed to adolescent physical functioning and mental health outcomes. Taken together, transplant consequences and family environment significantly impact physical and mental health outcomes in adolescent transplant recipients. Our findings demonstrate the need for pharmacological considerations and psychological interventions to address these areas.     

Psychosocial assessment prior to pediatric transplantation: A review and summary of key considerations

Annunziato RA, Fisher MK, Jerson B, Bochkanova A, Shaw RJ. Psychosocial assessment prior to pediatric transplantation: A review and summary of key considerations.
Pediatr Transplantation 2010: 14: 565–574. © 2010 John Wiley & Sons A/S. Abstract: Prior to listing for transplantation, patients participate in a comprehensive, multidisciplinary evaluation. One component of this process, incorporated by the vast majority of transplant centers, is a psychosocial assessment conducted by a mental health professional. The primary objectives of a pre‐transplant psychosocial assessment are to identify risk factors for difficulty adjusting post‐transplant as well as behaviors that may compromise transplantation outcomes. This paper aims to provide a summary of key considerations for pediatric transplant teams describing what this assessment might include, when it should be performed, training requirements for the evaluators, how results of the evaluation might best be utilized and suggestions for optimal patient preparation. Our findings suggest that the evaluation, which can be conducted by a variety of professionals, should include assessment of patient knowledge and motivation for transplant, mental health and substance abuse history, presence or absence of family and social support, availability of financial resources, past history of treatment adherence, and the quality of the family’s relationship with the transplant team. Repeat assessments and utilizing the initial evaluation for outcome assessment should be considered. Finally, the evaluation offers a unique opportunity for better preparing patients and families for transplantation.     

A multimethod assessment of psychosocial functioning and late effects in survivors of childhood cancer and hematopoietic cell transplant

Previous research in childhood cancer and hematopoietic cell transplant (HCT) survivorship has relied on the use of standardized questionnaires that assess symptoms of psychological functioning but do not sufficiently capture the cancer survivorship experience. Study aims are to quantitatively and qualitatively assess the psychosocial functioning of pediatric cancer and HCT survivors seen in a multidisciplinary survivorship clinic, determine survivorship concerns, and assess potential demographic and medical correlates of psychosocial outcomes. Data were collected using a retrospective chart review of a parent-report questionnaire of the child's psychological functioning, responses to a semistructured interview that qualitatively assessed adjustment to life after treatment, and documented medical late effects. Results indicated the majority of survivors had healthy psychological adjustment based upon a parent-report questionnaire. However, nearly 72% of survivors reported 1 or more survivorship concerns during the interview, with the primary concerns being current and future health or physical functioning, including the possibility of cancer recurrence. A content analysis of the interview responses indicated HCT survivors had more school or cognitive functioning concerns compared with survivors who did not have an HCT. Further research should use survivorship-specific measures to better identify survivors at risk and determine the impact of late effects on their quality of life.     

Best practices in the pediatric pretransplant psychosocial evaluation

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.     

Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation

Abstract: What psychosocial issues do adolescent cystic fibrosis (CF) patients experience after undergoing lung transplantation (Tx)? The aim of this study was to determine, using an ethnographic study design, the common themes and emotional responses in post‐lung transplant adolescent CF patients of the Cardiothoracic Transplant Clinic at the Childrens Hospital Los Angeles. Nineteen CF lung transplant recipients were studied (eight males, 11 females: mean age at time of transplant, 15.7 ± 2.7 yr). The mean time interval from Tx to interview was 25.4 months (range 1–58 months). Sixteen patients had living donor lobar lung Tx while three patients received cadaveric lungs. A series of 25 questions was used to assess the psychosocial impact of Tx, and a semi‐structured interview focused on the following five domains: lifestyle, family functioning, social functioning, body image, and psychological functioning. The major themes identified by patients included: a strong desire to set and attain meaningful long‐range goals, the need to control as many aspects of their lives as possible while dealing with parental over‐protectiveness, and the adjustment to a new lifestyle. Common emotional responses included manageable fear/anxiety of lung rejection and uncertainty of the future, impatience with disruptions of daily routines caused by post‐transplant medical management and its effect on the attainment of set goals, and frustration with parental over‐protectiveness. In general, patients reported a positive outlook on life, with greater emphasis on sought‐after goals as well as inter‐personal relationships. This study demonstrates that adolescent CF transplant recipients develop long‐term goals and plans for independence. By identifying and anticipating the emotional needs of this population, health care providers can assist patients in improving the quality of their lives from a physiological, as well as a psychological, viewpoint.     

Ongoing care for the patient with an anorectal malfromation; transitioning to adulthood

Planned health care transition can improve the ability of young adults to manage their own health care to effecively use health services and ultimately maximize life-long functioning and well-being. Transitional care is a purposeful, planned process that addresses the medical, psychosocial and educational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult-oriented healthcare systems. Unsuccessful surgical transtion may result in physical and mental health implications for young patients, negative long-term outcomes and suboptimal use of health care resources. Anorectal malformation and Hirschsprung patients are an especially vulnerable patient population with ongoing surgical, physiologic and pyschosocial challenges.     

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC

Kidney transplantation increases life expectancy and improves quality of life for children with end‐stage kidney disease, yet sequelae of transplantation and treatment make it difficult for transplant recipients to enjoy health and quality of life similar to their healthy peers. The NAPRTCS network was among the first to use multicenter data to inform improvements in care and outcomes for children with a kidney transplant through observational research. Now, with new technologies and unprecedented access to data, it is possible to create learning health systems as envisioned by the US National Academy of Sciences to seamlessly integrate research and continuous improvement of clinical care. In this review, we present two pre‐eminent North American networks focused on using multicenter data to drive improved care and outcomes for children with a kidney transplant. Whereas, for the past 30 years NAPRTCS has focused on discovery of best practices through observational research and clinical trials, the Improving Renal Outcomes Collaborative, established in 2016, engages patients, families, clinicians, and researchers in redesigning the healthcare delivery system to enable practice change and continuous improvement of health outcomes. We discuss the history and past contributions of these networks, as well as current activities, barriers, and potential future solutions to more fully realize the vision of a true learning health system for pediatric kidney transplant recipients.     

Sleep quality is associated with psychosocial functioning and health‐related quality of life in pediatric transplant recipients

This study examined patient‐reported sleep quality in a single‐center cross‐sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty‐nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self‐report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = ?3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = ?.31 to ?.40), and higher physical and psychosocial HRQOL (r = .33‐.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non‐Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.     

Neuropsychological outcome of infant heart transplant recipients

OBJECTIVE: To assess long-term neuropsychological outcomes of infant heart transplant recipients. STUDY DESIGN: Fifty-five children (mean age, 6.4 years) with a primary diagnosis of hypoplastic left heart syndrome or other cardiac disorders participated in the study. Six areas of risk were assessed (birth; preoperative, intraoperative, and postoperative status; long-term medical complications; and socioeconomic factors). Neuropsychological evaluations included the following: Wechsler Scales of Intelligence, Wechsler Individual Achievement Test, Berry Visual Motor Integration Scale, Comprehensive Evaluation of Language Function, and Achenbach Child Behavioral Checklist. RESULTS: Intellectual functioning scores revealed a mean full-scale IQ of 81 +/- 19. Intraoperative and postoperative variables (bypass time, hospital course, and lowest posttransplant pH), long-term medical complications (serious infections and posttransplant surgical procedures), and socioeconomic factors were associated with cognitive functioning. Visual-motor functioning was also related to bypass and total support time. CONCLUSIONS: Long-term outcomes reveal low-average neuropsychological functioning and are related to intrasurgical-postsurgical, long-term medical, and socioeconomic factors. The neuropsychological and psychosocial functioning of infant heart transplant recipients will be important to address as they mature during adolescence and adulthood.     

Health‐related quality of life among siblings of kidney transplant recipients

Studies are increasingly recognizing health‐related quality of life (HRQOL) as a key pediatric outcome in both clinical and research settings and an essential health outcome measure to assess the effectiveness of medical treatment. However, it has not yet been studied among the healthy siblings of kidney transplant recipients. The aim of this study, therefore, is to examine HRQOL among this population. We asked the following three groups to complete a validated measure of HRQOL among children (KIDSCREEN‐52 ) : siblings of children who had received kidney transplants (n = 50), kidney transplant recipients (n = 43), and a healthy control group (n = 84). We found that siblings of kidney transplant patients exhibited lower scores for financial resources and autonomy than kidney transplant recipients. They also served lower on physical well‐being, financial resources, autonomy, and parent relations/home life than the control group. However, they scored higher on social acceptance than kidney transplant recipients. Our study underscores the importance of assessing HRQOL in families including a child diagnosed with a chronic illness. Siblings require social and psychological support to promote coping and adaptation.     

Promoting child and adolescent mental health in the context of the HIV/AIDS pandemic with a focus on sub-Saharan Africa

Background: The pandemic of HIV/AIDS is actually a composite of many regional and national‐level epidemics. The progress made in many parts of the developed and developing world is tempered by the continued devastating consequences of HIV infection in sub‐Saharan Africa (SSA). This review focuses on the ways in which children and adolescents are impacted by the epidemic, giving particular attention to their mental health. Methods: A health promotion framework is adopted to guide analysis. Three issues are covered: prevention of HIV infection, care and treatment of children infected with HIV, and care of children whose caregivers are ill or have died of AIDS. Existing reviews and literature search engines were used to review the scientific literature, focusing on the past five years. Results: Preventive interventions continue to manifest limited benefits in behavioral changes. More complex causal models and improved behavioral measures are needed. In the African context, the time has come to view pediatric AIDS as a chronic disease in which the mental health of caregivers and children influences important aspects of disease prevention and management. Increasingly sophisticated studies support earlier findings that social and psychological functioning, educational achievement and economic well‐being of children who lose parents to AIDS are worse than that of other children. Conclusions: Important changes are taking place in SSA in increased access to HIV testing and antiretroviral therapies. To be effective in promoting mental health of children and adolescents, interventions require a more fundamental understanding of how to build HIV competence at personal and community levels. A key recommendation calls for the design and execution of population‐based studies that include both multilevel and longitudinal features. Such rigorous conceptual and empirical investigations that assess the capacities of children are required to mobilize children, families and communities in comprehensive actions plans for prevention, treatment and care in response to the enduring HIV/AIDS pandemic.     

Should minors and young adults qualify as potential live kidney donors? The views of international transplant professionals

Although live kidney donation (LD) has become an increasingly common procedure, European and US transplant centres disagree as to whether minors and young adults should qualify as donor candidates. Therefore, we aimed to better understand the attitudes and viewpoints of transplant professionals. We conducted fourteen in‐depth interviews with a purposive sample of international transplant professionals from various professional backgrounds. Data analysis was guided by QUAGOL, a systematic approach based on the constant‐comparative method. Professionals expressed a cautionary view, worrying about the uncertain long‐term medical and psychosocial consequences of LD at a young age. They also worried that young individuals’ decisions are more likely to be influenced by their psychosocial developmental stage or family pressure. As these concerns were more significant for minors as compared to young adults, minors were deemed ineligible for LD except for in highly exceptional circumstances. Professionals’ attitudes were also influenced by the expected benefits for the recipient and the availability of therapeutic alternatives, as well as the strength of the donor‐recipient relationship. More prospective research on the long‐term medical and psychological outcomes in young adult donors is likely to shed more light on the acceptability of LD by adolescents and young adults.     

Siblings of paediatric cancer patients: a population at risk

The psychosocial care of children with cancer has received increasing and welcome emphasis in the medical literature. However, the current and future status of siblings of such patients has been an underestimated area of concern. We examine the general importance of sibling relationships and present the literature regarding siblings of paediatric oncology patients. Donors and recipients of bone marrow transplants are considered specifically. Preliminary results of original research, supported by available published studies, suggest important disturbances in the mental health of siblings. Implications for paediatricians and other health professionals as well as prevention and intervention strategies are indicated.     

Long-term psychosocial consequences of surgical congenital malformations

Surgical congenital malformations often represent years of treatment, large number of hospital stays, treatment procedures, and long-term functional sequels affecting patients’ psychosocial functioning. Both functional defects and psychosocial difficulties that occur commonly in childhood may pass through adolescence on to adulthood. This overview presents reports published over the past 3 decades to elucidate the long-term psychosocial consequences of surgical congenital malformations.Literature searches conducted on PubMed database revealed that less than 1% of all the records of surgical congenital malformations described long-term psychosocial consequences, but with diverse findings. This inconsistency may be due to methodological differences or deficiencies; especially in study design, patient sampling, and methods. Most of the studies revealed that the functional deficits may have great impact on patients’ mental health, psychosocial functioning, and QoL; both short- and long-term negative consequences. Factors other than functional problems, e.g., repeated anesthesia, multiple hospitalization, traumatic treatment procedures, and parental dysfunctioning, may also predict long-term mental health and psychosocial functioning. Through multidisciplinary approach, pediatric surgeons should also be aware of deficits in emotional and psychosocial functioning. To achieve overall optimal psychosocial functioning, the challenge is to find a compromise between physically optimal treatment procedures and procedures that are not psychologically detrimental.