Educational Needs of the Adolescent Transplant Recipient: A Developmental Approach to Understanding Transplant.

BACKGROUND: As pediatric transplant patients reach adolescence, care teams must prepare them for an eventual transition to adult-oriented care. Care teams must provide patients with the necessary knowledge and skills to manage their medical needs independently, but the level of learning required to successfully self-manage a transplant is substantial. Furthermore, adolescence is also a dynamic developmental period that includes significant cognitive development and changes in social motivations. METHODS: Within this report, we offer insights into some of the key developmental mechanisms of adolescence that may influence their learning in a medical context. We also review key concepts that should be included in patient education across a range of domains. Finally, we consider how patients with comorbid developmental disorders may require tailored education. RESULTS: Key domains for education include (1) personal health history, (2) medication knowledge/adherence, (3) navigation of the healthcare system, and (4) communication with others about their health. Teams should intentionally track patient progress in their education, although few formalized tools are currently available to support tracking. Accommodations to learning for patients with developmental needs include varied instructional modalities (e.g., verbal, written, and modeling), opportunities to practice skills in a controlled manner, and establishment of family/community support that can persist into adulthood. CONCLUSIONS: Education of transplant patients is a critical but long-term process that supports the successful transition to adulthood. Care teams should develop intentional plans to transfer knowledge and build skills across adolescence, while remaining open to adaptive approaches to support the learning of all patients.

Non-pharmacological interventions engaging organ transplant caregivers: A systematic review.

INTRODUCTION: Lay-caregivers in organ transplantation (to candidates, recipients, and donors) are essential to pre- and postoperative care, but report significant caregiving-related stressors. This review aims to summarize studies testing nonpharmacological interventions aimed at improving organ transplant caregiver-reported outcomes. METHODS: In accordance with PRISMA, we conducted a systematic review (searched PubMed, Embase, Cochrane Central, PsycInfo, and CINAHL, no start-date restriction through 7/1/2021). Quality of comparative studies assessed by ROBS-2 or ROBINS. RESULTS: Twelve studies met inclusion. Study designs, interventions, and outcomes varied. Sample sizes were small across caregivers to adults (nine studies, five with caregiver samples ns≤50) and pediatric patients (three studies, caregiver samples ns≤16). Study designs included seven single-arm interventions, two prepost with comparison cohorts, and three randomized-controlled trials. Eight studies included transplant-specific education as the intervention, an interventional component, or as the comparison group. Outcomes included transplant specific knowledge, mental health, and intervention acceptability. Of the nine prepost caregiver assessments and/or comparison groups, four studies demonstrated no statistically significant intervention effects. CONCLUSION: Few interventions addressing the needs of organ transplant caregivers have been empirically evaluated. Existing interventions were well-received by caregivers. Given complexities of care in transplantation, research is needed evaluating interventions using rigorous trial methodology with adequate samples.

Nurses' Experiences Implementing e PED : An iPad Application to Guide Quality Discharge Teaching.

Quality discharge teaching prepares patients and families to transition safely from hospital to home. Technology can enhance and support quality discharge teaching by promoting patient family engagement during the transition. The purpose of this mixed methods study was to explore clinical nurses' experience with using Engaging Parents in Education for Discharge, an iPad application to guide quality discharge teaching. Twelve nurses at a large Midwestern Children's Hospital participated in small focus groups after use of the Engaging Parents in Education for Discharge application and completed a questionnaire on their perception of the acceptability and feasibility of the app. Findings revealed three themes: (1) development and deployment issues focused on the importance of training and support by the study team during implementation; (2) workflow integration centered on the importance of incorporating use of the app into current workflows and to preserve effective communication strategies with parents to optimize use in the healthcare setting; and (3) nurses perceived value in the use of the Engaging Parents in Education for Discharge app for beneficial scripting, questions on discharge topics often forgotten, and guidance for complex patients. Results of this study offer insight into key components for consideration when implementing and integrating technology to aid nursing practice.

Outcomes following liver transplantation in young infants: Data from the SPLIT registry.

Liver transplantation (LT) in young patients is being performed with greater frequency. We hypothesized that objective analysis of pre-, intra-, and postoperative events would help understand contributors to successful outcomes and guide transplant decision processes. We queried SPLIT registry for pediatric transplants between 2011 and 2018. Outcomes were compared for age groups: 0-<3, 3-<6, 6-<12 months, and 1-<3 years (Groups A, B, C, D respectively) and by weight categories: <5, 5-10, >10 kg; 1033 patients were available for analysis. Cholestatic disease and fulminant failure were highest in group A and those <5 kg; and biliary atresia in group C (72.8%). Group A had significantly higher life support dependence (34.6%; P < .001), listing as United Network for Organ Sharing status 1a/1b (70.4%; P < .001), and shortest wait times (P < .001). The median (interquartile range) for international normalized ratio and bilirubin were highest in group A (3.0 [2.1-3.9] and 16.7 [6.8-29.7] mg/dL) and those <5 kg (2.6 [1.8-3.4] and 13.5 [3.0-28.4] mg/dL). A pediatric end -stage liver disease score ≥40, postoperative hospital stays, rejection, and nonanastomotic biliary strictures were highest in group A with lowest survival at 93.1%. Infants 0 to <3 months and those <5 kg need more intensive care with lower survival and higher complications. Importantly, potential LT before reaching status 1a/1b and aggressive postoperative management may positively influence their outcomes.

Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward.

Lay-caregivers are essential to the continuum of care in adult organ transplantation. However, we have a limited understanding of the experiences, exigencies, and outcomes associated with lay-caregiving for organ transplant patients. While much discussion and debate has focused on caregiver requirements in relation to transplant candidate selection, little focus has been given to understanding the needs of caregivers themselves. In response to this, the Organ Transplant Caregiver Initiative was created, and a meeting was held during October 6-7, 2019. Transplant healthcare professionals, researchers, and lay-caregivers discussed the experiences, educational needs, existing research, and research recommendations to improve the experience of lay-caregivers for adult organ transplant patients. In this report, we summarize the Organ Transplant Caregiver Initiative and meeting findings, providing a preliminary action plan to improve education, research, and advocacy for organ transplant caregivers.

Variation in immunosuppression practices among pediatric liver transplant centers-Society of Pediatric Liver Transplantation survey results.

BACKGROUND: Variation in IS exists among pediatric liver transplant centers. While individual centers may publish their practice paradigms, current data on practices as a whole are lacking. This study sought to ascertain the IS protocols of pediatric liver transplant centers within the SPLIT to better understand variability and similarities among peer institutions. METHODS: A 27-item questionnaire was developed within the SPLIT Quality Improvement and Clinical Care Committee. The survey collected data regarding center demographics, IS practices, and treatment of acute cellular rejection. RESULTS: Twenty-eight (64%) SPLIT centers responded with 22 (79%) centers performing more than 10 transplants per year and 17 (61%) following more than 100 post-transplant recipients. All centers use a written protocol, and 25 (89%) have a dedicated transplant pharmacist/PharmD. Twenty-five (89%) centers use steroids for induction alone or in combination with thymoglobulin/interleukin-2 antibodies. All centers use tacrolimus for initial maintenance therapy. Most centers have specialized protocols for ABO-incompatible transplants, recipients with renal dysfunction, autoimmune liver diseases, and liver tumors. Treatment of rejection varied but was associated with escalation in IS. CONCLUSION: IS practices among pediatric liver transplant centers are similar including the use of written protocols, pharmacy involvement, steroids for induction, tacrolimus as initial IS, tacrolimus reduction/delay for renal dysfunction, and escalation of IS with rejection severity. However, other IS practices show wide variability including treatment for ABO-incompatible grafts and presumed rejection. This study serves as a foundation to guide prospective research linking IS practice to outcomes to determine best practice.

Quality improvement project to improve vaccinations in the pediatric liver transplant population.

OBJECTIVES: A quality improvement approach was used to increase pediatric liver transplant recipient live and inactive vaccination rates by assessing titers and recommending vaccinations. METHODS: A new screening and immunization process for both live and inactive vaccines was discussed with families at their annual visit. Antibody titers for varicella, measles, mumps, rubella, Haemophilus influenzae type B, hepatitis A, and hepatitis B were obtained. Specific criteria were developed for live virus vaccination candidacy. Vaccines were recommended based on patient titers and vaccination candidacy criteria. Surveillance for adverse effects to live vaccines was performed. Repeat titers were obtained approximately 1-month post-vaccine administration. RESULTS: After PDSA cycle 1, 99% (71/72) of pediatric liver transplant patients had titers obtained. Live vaccines were recommended for 32 patients and 16 (50%) were vaccinated. Inactive vaccines were recommended to 64 patients, and 31 (48%) were vaccinated. Eight of 13 (62%) patients with follow-up titers achieved immunity for inactive vaccines. Zero patients had an adverse reaction to any live vaccine. Ten of 12 (83%) patients with follow-up titers achieved immunity from live vaccines. The most common barriers to receive live vaccines included not scheduling appointment with primary care provider (n = 3) and "non-vaccinators" (n = 3). CONCLUSIONS: Administering live and inactive vaccines to select pediatric liver transplant patients appears to be safe and effective in our studied population. For PDSA cycle 2, we will continue our current practice and consider offering vaccines in transplant clinic, since this was a barrier to vaccination identified during PDSA cycle 1.

Patient expectations for recovery after elective surgery: a common-sense model approach.

Patient perceptions of the causes of preoperative symptoms, expected impact of surgery on symptoms and anticipated timeline of recovery are likely to affect the risk of readmission following elective surgical procedures. However, these perceptions have not been studied. A qualitative study was designed to explore these perceptions, using the common-sense model of self-regulation (CSM) as the conceptual framework. CSM is grounded in illness representations, describing how patients make sense of changes in physical well-being (e.g. symptoms) and develop and assess management plans. It also establishes a broader framework for examining patients' a priori expectations and timelines for outcomes based on comparisons to prior experiences and underlying self-prototypes, or "Self as Anchor". A convenience sample of 14 patients aged 56-81 who underwent elective surgery was recruited. Semi-structured interviews informed by the CSM were completed on the day of discharge. Content analysis with deductive coding was used, and emerging themes were fit to components of the CSM, including the five domains of Illness Representations-identity, cause, timeline, control, and consequences. Two additional themes, outlook (toward the health care system, providers and recovery efforts), and motivation (external or internal for recovering), relate to self-prototypes, expectations for outcomes, and search for coherence. Misattribution of symptoms, unrealistic expectations for outcomes (e.g. expecting complete resolution of symptoms unrelated to the surgical procedure) and timelines for recovery (unrealistically short), and the (baseline) "normal healthy self" as distinct from the (temporarily) "sick self" were recurrent themes. Findings suggest that patient perceptions and the actual recovery process may be misaligned. The results underscore the importance of assessing patients' perceptions and expectations, actively engaging patients in their own healthcare, and providing adequate support during the transition to home.

Pilot study protocol of a mHealth self-management intervention for family members of pediatric transplant recipients.

Solid-organ transplantation is the treatment of choice for end-stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self-Management Theory and focuses on family self-management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family-nurse communication and family self-management behaviors for family members of pediatric transplant recipients.

Engaging Parents in Education for Discharge (ePED): Evaluating the Reach, Adoption & Implementation of an Innovative Discharge Teaching Method.

PURPOSE: This paper describes the evaluation of the implementation of an innovative teaching method, the "Engaging Parents in Education for Discharge" (ePED) iPad application (app), at a pediatric hospital. DESIGN AND METHODS: The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework was used to guide the evaluation. Three of the five RE-AIM elements are addressed in this study: Reach, Adoption, and Implementation. RESULTS: The Reach of the ePED was 245 of 1015 (24.2%) patient discharges. The Adoption rate was 211 of 245 (86%) patients discharged in the five months' study period. High levels of fidelity (89.3%) to Implementation of the ePED were attained: the Signs and Symptoms domain had the highest (93%) and Thinking Forward about Family Adjustment screen had the lowest fidelity (83.3%). Nurse themes explained implementation fidelity: "It takes longer", and "Forgot to do it." CONCLUSIONS: The ePED app operationalized how to have an engaging structured discharge conversation with parents. While the Reach of the ePED app was low under the study conditions, the adoption rate was positive. Nurses were able to integrate a theory-driven practice change into their daily routine when using the ePED app. IMPLICATIONS FOR PRACTICE: The rates of adoption and implementation fidelity support the feasibility of future hospital wide implementation to improve patient and family healthcare experience. Attention to training of new content and the interactive conversation approach will be needed to fully leverage the value of the ePED app. Future studies are needed to evaluate the maintenance of the ePED app.

Using the Engaging Parents in Education for Discharge (ePED) iPad Application to Improve Parent Discharge Experience.

PURPOSE: The purpose of this study was to evaluate the use of the Engaging Parents in Education for Discharge (ePED) iPad application on parent experiences of hospital discharge teaching and care coordination. Hypotheses were: parents exposed to discharge teaching using ePED will have 1) higher quality of discharge teaching and 2) better care coordination than parents exposed to usual discharge teaching. The secondary purpose examined group differences in the discharge teaching, care coordination, and 30-day readmissions for parents of children with and without a chronic condition. DESIGN/METHODS: Using a quasi-experimental design, ePED was implemented on one inpatient unit (n = 211) and comparison group (n = 184) from a separate unit at a pediatric academic medical center. Patient experience outcome measures collected on day of discharge included Quality of Discharge Teaching Scale-Delivery (QDTS-D) and care coordination measured by Care Transition Measure (CTM). Thirty-day readmission was abstracted from records. RESULTS: Parents taught using ePED reported higher QDTS-D scores than parents without ePED (p = .002). No differences in CTM were found between groups. Correlations between QDTS-D and CTM were small for ePED (r = 0.14, p 0.03) and non-ePED (r = 0.29, p < .001) parent groups. CTM was weakly associated with 30-day readmissions in the ePED group. CONCLUSION: The use of ePED by the discharging nurse enhances parent-reported quality of discharge teaching. PRACTICE IMPLICATIONS: The ePED app is a theory-based structured conversation guide to engage parents in discharge preparation. Nursing implementation of ePED contributes to optimizing the patient/family healthcare experience.

A clinical description of children with solid organ transplants who present with feeding disorder.

Pediatric solid organ transplant recipients have long-standing malnutrition concerns related to their pretransplant medical status. The targeted nutrition therapy utilized pre-, peri-, and post-transplantation may have the adverse effect of impeding normally developing feeding skills, particularly in very young children. Little is known about the relationship between transplantation and feeding disorders of childhood. The purpose of this study was to describe severity of feeding disorder and parental stress in patients with transplant compared to children followed in a specialty feeding clinic and the general community. Sixty-four children, comprised of 32 children with solid organ transplant ages 2 months to 12 years and 32 matched control patients diagnosed with a feeding disorder without history of solid organ transplant, were reviewed. All children were from the Feeding, Swallowing, and Nutrition Clinic at a single children's hospital. Findings indicate that patients who received a transplant and presented with a feeding problem had worse symptoms of feeding disorder than are typically found in the general community. These feeding problems disrupt mealtime behavior, caregiver and child relationship within a mealtime context, and may result in maladaptive feeding strategies used by families. When transplanted children present with feeding disorders, they are severe and have multiple effects on both the child and the feeding dynamic between the child and the child's caregivers. Further investigation may help us to better understand the relationship between transplantation and symptoms of feeding disorder.

Perioperative anticoagulation practices for pediatric liver transplantation.

Despite continued advancements in perioperative care for pediatric liver transplant (LT), graft-threatening vascular occlusion events including hepatic artery thrombosis (HAT) and portal vein thrombosis (PVT) remain a source of significant morbidity and mortality. Perioperative anticoagulation is commonly used for the prevention of HAT and PVT, but evidence-based guidelines are lacking. The goals of this survey were to determine the frequency of use of an anticoagulation protocol and to describe variation in anticoagulation practices among pediatric LT centers. The study consisted of an online survey distributed to members of SPLIT. The survey focused on institutional anticoagulation practices employed to reduce the incidence of graft and life-threatening vascular occlusion events. Responses were received from 31 of 39 SPLIT centers. All respondents report using anticoagulation after pediatric LT, and approximately 90% have institutional anticoagulation protocols. Subgroup analysis of high volume pediatric LT centers revealed similar variability in anticoagulation patterns. All participating SPLIT centers reported the use of post-transplant anticoagulation and nearly all use a protocol. However, there is marked variability in the type and dose of anticoagulation as well as the timing of initiation and duration of therapy across centers.

Modified Associating Liver Partition and Portal Vein Ligation for Staged Hepatectomy for Hepatoblastoma in a Small Infant: How Far Can We Push the Envelope?

: For patients with hepatoblastoma, a timely and complete resection of the tumor is critical to the patient's tumor recurrence-free survival. Associating liver partition and portal vein ligation for staged hepatectomy (ALPPS), a 2-stage hepatectomy procedure, has revolutionized the surgical management of large hepatic tumors with insufficient future liver remnant (FLR) at presentation. Although existing data support the utility of ALPPS in adults with primary and metastatic hepatobiliary malignancy, the literature in children is scarce. To our knowledge, this is the first report showing clinical applicability and safety of the modified ALPPS procedure in a small infant (54 days old) with hepatoblastoma who presented with insufficient FLR. Our report suggests the modified ALPPS could potentially expand the surgical treatment alternative for small infants with large hepatoblastoma.

Development of a Self-Management Theory-Guided Discharge Intervention for Parents of Hospitalized Children.

BACKGROUND: Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. PROBLEM: No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. PURPOSE: To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. METHODS: Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. CONCLUSIONS: The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. CLINICAL RELEVANCE: Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.

Pediatric Nurses' Perspectives on Medication Teaching in a Children's Hospital.

PURPOSE: To explore inpatient pediatric nurses' current experiences and perspectives on medication teaching. DESIGN AND METHODS: A descriptive qualitative study was conducted at a Midwest pediatric hospital. Using convenience sampling, 26 nurses participated in six focus groups. Data were analyzed in an iterative group coding process. RESULTS: Three themes emerged. 1) Medication teaching is an opportunity. 2) Medication teaching is challenging. Nurses experienced structural and process challenges to deliver medication teaching. Structural challenges included the physical hospital environment, electronic health record, and institutional discharge workflow while process challenges included knowledge, relationships and interactions with caregivers, and available resources. 3) Medication teaching is amenable to improvement. CONCLUSION: Effective medication teaching with caregivers is critical to ensure safe, quality care for children after discharge. Nursing teaching practices have not changed, despite advances in technology and major changes in hospital care. Nurses face many challenges to conduct effective medication teaching. Improving current teaching practices is imperative in order to provide the best and safest care. PRACTICE IMPLICATIONS: This study generated knowledge regarding pediatric nurses' teaching practices, values and beliefs that influence teaching, barriers, and ideas for how to improve medication teaching. Results will guide the development of targeted interventions to promote successful medication teaching practices.

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children.

PURPOSE: This study explored the sequential relationships of parent perceptions of the quality of their discharge teaching and nurse and parent perceptions of discharge readiness to post-discharge outcomes (parental post-discharge coping difficulty, readmission and emergency department visits). DESIGN/METHODS: In this secondary analysis of data from a longitudinal pilot study of family self-management discharge preparation, the correlational design used regression modeling with data from a convenience sample of 194 parents from two clinical units at a Midwest pediatric hospital. Data were collected on the day of discharge (Quality of Discharge Teaching Scale; Readiness for Hospital Discharge Scale), at 3weeks post-discharge (Post-Discharge Coping Difficulty Scale), and from electronic records (readmission, ED visits). RESULTS: Parent-reported quality of discharge teaching delivery (the way nurses teach), but not the amount of content, was positively associated with parent perception (B=0.54) and nurse assessment (B=0.16) of discharge readiness. Parent-reported discharge readiness was negatively associated with post-discharge coping difficulty (B=-0.52). Nurse assessment of discharge readiness was negatively associated with readmission; a one point increase in readiness (on a 10 point scale) decreased the likelihood of readmission by 52%. CONCLUSION: There is a sequential effect of quality of discharge teaching delivery on parent discharge readiness, which is associated with parent coping difficulty and child readmission. PRACTICE IMPLICATIONS: Efforts to improve discharge outcomes should include strategies to build nurse teaching skills for high-quality delivery of discharge teaching. In addition, routine nurse assessment of discharge readiness can be used to identify children at risk for readmission and trigger anticipatory interventions.

Role of Nutrition and Feeding for the Chronically Ill Pediatric Liver Patient Awaiting Liver Transplant.

This article reviews the essential role of nutrition in optimizing care for pediatric patients with liver disease awaiting liver transplant. A review of growth and overall principles of feeding for pediatric patients, from infancy through childhood and into adolescence, is provided including the role of macro- and micronutrients, nutrient distribution, and nutrition supplementation. The importance of a thorough nutrition assessment is reviewed, including focus areas the nurse can address with patients and families such as diet histories, growth, and dietary modifications. Suggestions for monitoring and implementing nutrition strategies are provided.

Pediatric solid organ transplant recipients: transition to home and chronic illness care.

Pediatric SOT recipients are medically fragile and present with complex care issues requiring high-level management at home. Parents of hospitalized children have reported inadequate preparation for discharge, resulting in problems transitioning from hospital to home and independently self-managing their child's complex care needs. The aim of this study was to investigate factors associated with the transition from hospital to home and chronic illness care for parents of heart, kidney, liver, lung, or multivisceral recipients. Fifty-one parents from five pediatric transplant centers completed questionnaires on the day of hospital discharge and telephone interviews at three wk, three months, and six months following discharge from the hospital. Care coordination (p = 0.02) and quality of discharge teaching (p < 0.01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = 0.02) at three wk, adherence with medication administration (p = 0.03) at three months, and post-discharge coping difficulty (p = 0.04) and family management (p = 0.02) at six months post-discharge. The results underscore the important aspect of education and care coordination in preparing patients and families to successfully self-manage after hospital discharge. Assessing parental readiness for hospital discharge is another critical component for identifying risk of difficulties in managing post-discharge care.

Vulnerability and chronic illness management in pediatric kidney and liver transplant recipients.

CONTEXT: Solid-organ transplant is the treatment of choice for end-stage organ failure and requires a transition from management of a life-threatening condition to a chronic illness. Despite research focusing on quality of life after transplant, there is a gap addressing the role of managing a chronic illness focusing on vulnerability and impact on family. OBJECTIVE: Identify patient and family patterns of adaptation among kidney and liver transplant recipients in regard to (1) vulnerability, (2) impact of illness on the family, (3) family functioning, and (4) quality of life (parent and child report). DESIGN: Cross-sectional study enrolling children 5 to 18 years old and their parent at a single time point after kidney or liver transplant. Validated self-report tools were completed. RESULTS: In all, 47 participants (24 kidney and 23 liver) were recruited. Mean age at transplant was 4.0 (kidney) and 2.1 (liver) years. Mean age at report was 12.1 (kidney) and 7.1 (liver) years. Child vulnerability correlated negatively with (1) family impact in the kidney (P < .05) and liver (P < .05) transplant groups, (2) PedsQL subscales including Parent Emotional (P< .05), Parent Social (P< .01), Parent Psychosocial (P < .01), Parent Physical (P < .05), Parent School (P < .05), and Child Social (P < .01) in the kidney transplant group, (3) PedsQL Parent Emotional subscale (P< .01) in the liver transplant group, and (4) Functional status (P < .01) in the liver transplant group. CONCLUSIONS: Child vulnerability provides insight into quality of life and the impact of illness on the family and family functioning.