There have been over 51 000 pediatric solid organ transplants since 1988 in the United States alone, leading to a growing population of long-term survivors who face complications of childhood organ failure and long-term immunosuppression.

This is an educational review of existing literature.

Pediatric solid organ transplant recipients are at increased risk for risk for cardiovascular and kidney disease, skin cancers, and growth problems, though the severity of impact may vary by organ type. Pediatric recipients often are able to complete schooling, maintain a job, and form family and social networks in adulthood, though at somewhat lower rates than the general population, but face additional challenges related to neurocognitive deficits, mental health disorders, and discrimination.

Transplant centers and research programs should expand their focus to include long-term well-being. Increased collaboration between pediatric and adult transplant specialists will be necessary to better understand and manage long-term complications.

Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances.

We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0-25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized.

Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received.

Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.

Longitudinal melanonychia, a pigmented longitudinal streak on the nail, is a common clinical finding that may be associated with subungual melanoma with varying presentation depending on race and skin tone. It has been long reported that darker skinned ethnicities have a higher prevalence of longitudinal melanonychia in the US population (e.g., African Americans with 77% prevalence) [Indian J Dermatol. 2021;66(4):445], but unfortunately, there are limited studies exclusively looking at longitudinal melanonychia in pediatric patients of color.

In this case series, we review the current literature and report the findings of 8 cases of longitudinal melanonychia in children with skin types IV or greater. Out of the 8 cases identified, only 4 returned to the clinic for monitoring (n = 4), and there was an average of 20.8 months between the initial and final visits. Of the patients that returned for follow-up, 2 showed no relevant changes in the nail pigmentation, 1 showed fading of the band, and 1 patient showed enlargement of the band to involve the whole nail.

Although many sources recommend a conservative approach to treatment that involves monitoring and follow-up, our findings indicate that a wait-and-see method cannot be applied to all cases in the pediatric population due to disruptions in continuity of care. An individualized approach considering such factors should be employed for each patient, and certain high-risk features of the ABCDEF nail melanoma model may be relevant in pediatric cases.

Neuroendocrine tumors are a rare type of cancer found in hormone-producing cells throughout the body. Research on disease-specific patient education assessments in this population is lacking. We previously demonstrated the feasibility and validity of NET VITALS, a patient-centered self-assessment designed to improve patients' knowledge of their neuroendocrine tumor diagnosis/treatment and facilitate communication with their physician. In this report, we provide a brief overview of patient assessments that have been used for patients with neuroendocrine tumors. We summarize NET VITALS and present a proposed infrastructure for its implementation into standard clinical care in both academic and community practice settings at City of Hope. Incorporating NET VITALS into standard of care treatment for patients with neuroendocrine tumors may improve patients' overall clinical care experience.

Organ transplant recipients (OTRs) are at a significantly elevated risk for developing cutaneous malignancies. In recent years, the advent of dermatology clinics dedicated to this specific patient population has aimed to provide increased access and specialized care, including important sun-protective behavior education. It has been shown that OTRs tend to have poor sun-protective practices, and care at these specialized dermatology clinics has facilitated an improvement in sun-protective behavior. Previously, sun-protective behavior of patients within these specialized clinics has been characterized longitudinally, though only for a short duration of 3 months. We retrospectively analyzed a cohort of 230 OTRs seen at a single academic institution's transplant clinic between 2016-2020 and sought to characterize sun-protective behavior at baseline and longitudinally. 78 patients returned for at least one follow-up visit, and the median follow-up duration was 15.1 months (IQR 8.4-24.3 months). Sun-protective behavior was quantified using the average score of questions addressing sunscreen usage frequency, consistency, circumstance of application, reapplication, and sun avoidance. We utilized paired Wilcoxon signed-rank tests to analyze changes in sun-protective behavior between initial visits and subsequent follow-up visits. Sun-protective behavior was increased at the first follow-up visit (median change in sun-protective score - 0.04, p = 0.017) and second follow-up visit (median change in sun-protective score - 0.25, p = 0.026) compared to the initial visit. Multivariable logistic regression and mixed effects modeling were employed to quantify patient features associated with increased sun-protective behavior. Female sex [OR 3.79, 95% CI (1.83, 8.04)] and personal history of skin cancer [OR 3.06, 95% CI (1.25, 7.76)] were associated with stronger sun-protective behaviors at baseline. Female sex [OR 13.77, 95% CI (2.44, 77.52)] was the only characteristic associated with increased sun-protective behavior over time. Our findings identify patient characteristics that are associated with increased sun-protective behavior after education in a dermatology clinic dedicated to OTRs.

Sun-protective strategies focusing on skin cancer awareness are needed in immunosuppressed patients at risk of skin cancers. The study aims to determine the effect of an integrated skin cancer education program on skin cancer awareness and sun-protective behaviours in renal transplant recipients (RTRs) and patients with glomerular disease (GD) treated with long-term immunosuppressants. A pilot prospective cohort study in Central Queensland, Australia was undertaken among adult RTRs and patients with GD, who completed survey questionaries on skin cancer and sun-health knowledge (SCSK), sun-protection practices and skin examination pre- and post-education. Fifty patients (25 RTRs, 25 patients with GD) participated in the study. All of them completed questionnaires at pre-, 3-month post-education and 92%(n = 46) at 6-month post-education. There was a significant increase in SCSK scores from baseline at 3-months (p < 0.001) and 6-months post-intervention (p < 0.01). Improved knowledge was retained for 6 months after education. There were changes in 2 of 8 photoprotective behaviours at 6 months. Interventional education enhanced regular self-skin examination rate (p < 0.001) as well as the frequency of full skin checks by general practitioners (GPs) (p < 0.001). Overall, RTRs had better compliance with sun-protective methods and higher skin examination rates by themselves and/ or GPs before and after the intervention of education compared to patients with GD. To conclude, an integrated skin cancer education program improved knowledge of skin cancer and skin health as well as the frequency of self-skin examination and formal skin assessments. However, improvement in patient compliance did not extend to other sun-protective practices.

Patients with atypical mole syndrome (AMS) have a 3- to 20-fold higher risk of developing malignant melanoma (MM) than individuals without. The most modifiable risk factor for developing MM is the ongoing ultraviolet exposure.

To assess awareness, knowledge, and attitudes towards sun protection among patients with MM and AMS.

From January 2020 till December 2021, a written survey was administered to patients with MM and AMS and a control group who attended a specialist mole clinic at the Dermatology Department of the University Hospital of Heraklion in Heraklion, Crete, Greece. Demographic data and photoprotective practices, knowledge, and perceived barriers were collected. Relevant statistical analyses were performed using SPSS IBM 25.

In total, 121 subjects consented and participated in the survey. Their mean age was 43.92 ± 12.55 years. There were 66 (54.4%) females and 55 (45.4%) males. Forty-seven (38.8%) patients had AMS, 26 (21.5%) had a past medical history of MM, and 48 (39.7%) attended the clinic for a full skin checkup for their naevi without having AMS or MM. Although 104 (86%) participants reported using sunscreen with the majority of them (59/121 = 48.8%) wearing sunscreen with a sun protection factor of > 50, only 22 (18.2%) patients did so every day and only 20 (16.5%) all year round. Approximately 74.4% of patients recalled having received advice on how to protect their skin from sunlight, and 73% were interested in receiving education about sun protection. The most mentioned barriers in photoprotection were concerns over adequate vitamin D and lack of time.

Despite mentioning having received adequate education in photoprotection, adherence to photoprotection practices is suboptimal in patients with MM and AMS.

There is a lack of effective patient education regarding diagnosis/treatment of neuroendocrine tumors (NETs), possibly related to their rare incidence.

In this cross-sectional survey study, NET patients attending the 2019 Annual Los Angeles NET Education Conference were approached to complete NET VITALS, a self-assessment tool gauging patients' perception/awareness of their NET diagnosis/treatment, and a satisfaction survey. Feasibility of NET VITALS, patient satisfaction with NET VITALS, and patients' perception/awareness of their NET diagnosis/treatment were evaluated.

This analysis included 68 patients (median age, 63 years; 47.1% gastrointestinal NETs; 88.2% metastatic disease). Participation was 88.3% (68/77), with a median of 85.7% of items completed (range, 61.9%-100.0%). More than 30% of the patients answered "Don't know/Not familiar"/left blank questions related to tumor characteristics, years of symptoms, and liver-directed therapies. In addition, 69.5% of the patients did not feel sufficient information about NETs was provided at diagnosis. Overall, 67.8% of the patients felt that NET VITALS provides topics to discuss with providers and 76.3% would recommend NET VITALS to others.

NET VITALS is a feasible and acceptable self-assessment tool to potentially help patients improve communication about their NET diagnosis/treatment with their physician. Further studies will examine NET VITALS' generalizability and discuss its incorporation into clinical care.

The most frequently reported malignancies after solid organ transplant are cutaneous, but data on the risk in pediatric populations varies across studies.

To perform a systematic review including reported features and outcomes of skin cancers in pediatric solid organ transplant recipients.

EMBASE and MEDLINE were systematically searched (Prospero CRD42020201659).

The review summarizes data from 20 studies on 337 patients, with a median age ranging from 15.0 to 19.5 years as reported in 4 studies, who developed skin malignancies after pediatric solid organ transplantation. Median ages at transplant and skin cancer diagnosis ranged from 1.5 to 17.0 years and 15.3 to 33.5 years, respectively. Squamous cell carcinoma (SCC) was most commonly reported (218 cases), followed by basal cell carcinoma (BCC) (91 cases), melanoma (18 cases), and unspecified keratinocyte carcinomas (2 cases). The median latency period between transplantation and cancer diagnosis ranged from 2.2 to 21.0 years. Overall, 4 studies reported 17 cases of metastasis in total, and recurrence was reported in one case. Six deaths were reported in one study related to SCC and melanoma metastases. The incidence rate of skin cancer after pediatric transplantation per 100 person-years of follow-up was 2.1 based on 5 studies.

The most frequent post-transplant malignancy in pediatric organ transplant recipients was SCC.

Developing continuing medical education (CME) training programs is a strategy for communicating emerging science to health practitioners. This research tests the feasibility of using CME modules for translating and disseminating research findings from the Breast Cancer and Environment Research Program. Recent findings have identified certain windows of susceptibility, like during puberty, in which exposure to endocrine-disrupting chemicals can increase breast cancer risk later in life. In order to reach pediatric patients and their caregivers, using a Diffusion of Innovations framework, pediatric health-care providers were identified as opinion leaders. Two CME modules informed by theory and formative research were tested with a sample of pediatricians and pediatric nurse practitioners. Participants completed knowledge, attitude, intention, and behavior items immediately before and after exposure to a randomly assigned module, and then again 3 weeks later. Quantitative and qualitative results indicate knowledge gain and strong links between practitioners' intentions to enact and implemented behavior learned from training recommendations with parents and caregivers in their practices. Results indicate that CMEs can be an effective strategy for translational activities targeted to health providers in order to change behavior within practice.

The objectives of this retrospective cohort study are to describe rates of adherence to laboratory testing 6 months to 3 years post-liver transplantation and to examine demographic and clinical factors related to lab non-adherence and the association with medication adherence and clinical outcomes.

Medical chart review was conducted for 54 youth (mean age = 5.0 years) transplanted between 2003 and 2014. Lab adherence (≥80%) was measured as the proportion of completed labs out of the number expected. Immunosuppressant drug-level variability was used as a proxy for medication adherence. Clinical outcomes included LAR, viral infection, hospitalization, and non-routine clinic visit ≥12 months after transplant.

Lab adherence decreased substantially over time. Single-parent household (aOR 5.86; 95% CI: 1.38-24.93) and no history of early rejection (aOR 3.96; 95% CI: 1.04-15.24) were independently associated with non-adherence. Lab non-adherence was significantly associated with medication non-adherence (P < .05), LAR (P = .02), and non-routine clinic visits (P = .03).

Systematic monitoring of lab adherence may help in identifying pediatric LT recipients at increased risk for excessive healthcare use and adverse outcomes possibly due to poor disease management.

The majority of cancer diagnoses in pediatric solid organ transplant recipients (SOTRs) are post-transplantation lymphoproliferative disorders (PTLD) or skin cancers. However, pediatric SOTRs are also at significantly elevated risk for multiple other solid and hematological cancers. The risks of specific cancers vary by transplanted organ, underlying disease, and immunosuppression factors. More than one-quarter of pediatric SOTRs develop cancer within 30 years of transplantation and their risk of solid cancer is 14 times greater than the general population. Pediatric SOTRs are at significantly higher risk of cancer-associated death. Improving patient survival among pediatric SOTRs puts them at risk of adult epithelial cancers associated with environmental carcinogenic exposures. Vaccination against oncogenic viruses and avoidance of excessive immunosuppression may reduce the risk of solid cancers following transplantation. Patient and family education regarding photoprotection is an essential component of skin cancer prevention. There is significant variability in cancer screening recommendations for SOTRs and general population approaches are typically not validated for transplant populations. An individualized approach to cancer screening should be developed based on estimated cancer risk, patient life expectancy, and screening test performance.

As the number of living pediatric solid organ transplant (SOT) recipients continues to grow, there is an increased likelihood that primary care providers (PCPs) will encounter pediatric SOT recipients in their practices. In addition, as end-stage organ failure is replaced with chronic medical conditions in transplant recipients, there is a need for a comprehensive approach to their management. PCPs can significantly enhance the care of immunosuppressed hosts by advising parents of safety considerations and avoiding adverse drug interactions. Together with subspecialty providers, PCPs are responsible for ensuring that appropriate vaccinations are given and can play an important role in the diagnosis of infections. Through early recognition of rejection and posttransplant complications, PCPs can minimize morbidity. Growth and development can be optimized through frequent assessments and timely referrals. Adherence to immunosuppressive regimens can be greatly improved through reinforcement at every encounter, particularly among adolescents. PCPs can also improve long-term outcomes by easing the transition of pediatric SOT recipients to adult providers. Although guidelines exist for the primary care management of adult SOT recipients, comprehensive guidance is lacking for pediatric providers. In this evidence-based overview, we outline the main issues affecting pediatric SOT recipients and provide guidance for PCPs regarding their management from the first encounter after the transplant to the main challenges that arise in childhood and adolescence. Overall, PCPs can and should use their expertise and serve as an additional layer of support in conjunction with the transplant center for families that are caring for a pediatric SOT recipient.

We review the outcomes and future challenges associated with pediatric vascularized composite allotransplantation, including follow-up data from our bilateral pediatric hand-forearm transplantation.

In 2015, the first heterologous pediatric upper extremity hand-forearm transplant was performed at the Children's Hospital of Philadelphia, and in 2019, the first pediatric neck reconstructive transplantation was performed in Poland. The 5-year follow-up of the pediatric upper extremity recipient demonstrates similar growth rates bilaterally, an increase in bone age parallel to chronologic age, and perhaps similar overall growth to nontransplant norms. The pediatric upper extremity recipient continues to make gains in functional independence. He excels academically and participates in various extracurricular activities. Future challenges unique to the pediatric population include ethical issues of informed consent, psychosocial implications, limited donor pool, posttransplant compliance issues, and greater life expectancy and therefore time to inherit the many complications of immunosuppression.

Currently, we recommend pediatric vascularized composite allotransplantation (VCA) for bilateral upper extremity amputees, preferably on immunosuppression already, and those patients who would have the most potential gain not available through standard reconstructive techniques while being able to comply with postoperative immunosuppression protocols, surveillance, rehabilitation, and follow-up.

This scoping review aims to give a comprehensive and systematic overview of published evaluations and the potential impact of patient education interventions for children, adolescents and young adults who are living with chronic illness and/or impairment loss.

Relevant literature published between 2008 and 2018 has been comprehensively reviewed, with attention paid to variations in study, intervention and patient characteristics. Arksey and O'Malley's framework for scoping studies guided the review process, and thematic analysis was undertaken to synthesize extracted data.

Of the 7214 titles identified, 69 studies were included in this scoping review. Participant-reported benefits of the interventions included less distress from symptoms, improved medical adherence and/or less use of medication, and improved knowledge. The majority of studies measuring physical activity and/or physiologic outcomes found beneficial effects. Interventions were also beneficial in terms of decreased use of urgent health care, hospitalization, visits to general practitioner and absence from school. By sharing experiences, participants had learned from each other and attained new insight on how they could manage illness-related challenges.

Study results corroborate previous research suggesting that different types of patient education interventions have a positive impact on children, adolescents and young adults, but research on this field is still in a starting phase. The results summed up in the current review supports the utility of patient education interventions that employ behavioural strategies tailored to the developmental needs of children, adolescents and young adults with different cultural backgrounds.

Skin cancer is among the most frequent cancers in pediatric organ transplant recipients. We report a 17-year-old Caucasian girl who had had a kidney transplant 6 years before and was referred to our outpatient clinic for a basal cell carcinoma of the scalp. This case emphasizes the importance of teaching sun-protective behavior to transplant recipients and their parents and having a high index of suspicion and arrange for early referral for dermatologic care if skin changes are observed.