Stacee M. Lerret

Pediatric Health-Related Quality of Life: Feasibility, Reliability and Validity of the PedsQL™ Transplant Module

The measurement properties of the newly developed Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty‐eight parents of children ages 2–18 and 274 children ages 5–18 completed both the PedsQL™ 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self‐report and parent proxy‐report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self‐report α= 0.93; total scale score for parent proxy‐report α= 0.94). Transplant‐specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL™ Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.

Discharge Readiness: An Integrative Review Focusing on Discharge Following Pediatric Hospitalization

PURPOSE This review aims to identify factors associated with parental discharge readiness following pediatric hospitalization, with focus applicability to solid organ transplant patients. DESIGN AND METHODS Thirty-eight publications, including research and clinical practice papers, were identified using Coopers methodology for conducting integrative research reviews (1982). RESULTS Four concepts emerged influencing discharge readiness: support, identification of unique and individual needs, education, and communication and coordination. Synthesis of themes resulted in two overarching concepts: meaningful interactions and confidence building. PRACTICE IMPLICATIONS Nurses have a singular opportunity to enhance meaningful interactions and confidence building, ultimately promoting a successful transition home.

How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant

Lerret SM, Weiss ME. How ready are they? Parents of pediatric solid organ transplant recipients and the transition from hospital to home following transplant.
Pediatr Transplantation 2011: 15: 606–616.

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 childs 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.

The SPLIT research agenda 2013.

This review focuses on active clinical research in pediatric liver transplantation with special emphasis on areas that could benefit from studies utilizing the SPLIT infrastructure and data repository. Ideas were solicited by members of the SPLIT Research Committee and sections were drafted by members of the committee with expertise in those given areas. This review is intended to highlight priorities for clinical research that could successfully be conducted through the SPLIT collaborative and would have significant impact in pediatric liver transplantation.

Pediatric nonalcoholic fatty liver disease.

Nonalcoholic fatty liver disease (NAFLD) is a chronic liver disease related to excessive accumulation of hepatic fat, and represents a spectrum of liver disease ranging from fat accumulation alone (steatosis) to the more significant histologic finding of steatohepatitis. Nonalcoholic steatohepatitis is a progressive liver disease associated with increased risk of liver cirrhosis and cancer. NAFLD is becoming increasingly prevalent in the pediatric population in direct correlation with the emergence of childhood obesity as a significant pediatric health problem. The exact pathophysiology of NAFLD remains unclear, although the interplay of insulin resistance, oxidative stress, and release of proinflammatory cytokines are implicated in the process. The diagnostic workup and treatment for NAFLD and nonalcoholic steatohepatitis remains controversial. This review discusses current concepts regarding the natural history, pathophysiology, and management of pediatric patients with NAFLD.

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.

Predictors of nonalcoholic steatohepatitis in obese children.

As the prevalence of childhood obesity increases, the incidence of nonalcoholic fatty liver disease and nonalcoholic steatohepatitis (NASH) also escalates. This studys purpose was to identify the clinical criteria to aid in determining when a liver biopsy is indicated for this growing population because currently no guidelines exist. We performed a retrospective chart review on all patients who were seen in the Nutrition Exercise and Weight Loss Kids™ Program at the Childrens Hospital of Wisconsin from July 2003 through December 2004. We analyzed only individuals who underwent liver biopsy with the following criteria: (1) no evidence of other liver disease and (2) aspartate transaminase or alanine aminotransferase greater than 200 IU/L or any elevation of or for more than 6 months. Of the 284 patients reviewed, only eight patients (3%) met the criteria for analysis. Biopsy results demonstrated that 100% had histological evidence of NASH with steatosis, and seven of the eight (87.5%) had NASH with fibrosis, cirrhosis, or both. Obese children with an aspartate transaminase or alanine aminotransferase greater than 200 IU/L or any elevation of aspartate transaminase or alanine aminotransferase for more than 6 months, have a strong likelihood of having NASH with or without fibrosis, cirrhosis, or both.

Respiratory syncytial virus and pediatric liver transplant: one center's experience

Respiratory syncytial virus (RSV) is a ubiquitous virus responsible for acute infections of the respiratory tract in patients of all ages. RSV presents significant health risks to immunocompromised patients. Two patients, 1 before a liver transplant and 1 after a liver transplant, died of a severe RSV infection. Because of the high risk of death, we recommend expanding the criteria for palivizumab prophylaxis to 2 types of patients: (1) patients with chronic liver disease or who have received a liver transplant and are 24 months old or less and (2) transplant recipients with underlying pulmonary conditions who are less than 36 months old. Further research is indicated in pediatric solid-organ transplant centers to evaluate the effective management of RSV infection to prevent morbidity.

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. HighlightsEffective medication teaching with caregivers is critical for childrens safety.Pediatric nurses view medication teaching as an opportunity to prepare caregivers.Structure and process challenges hinder effective medication teaching.Improving current teaching practices is needed to help prevent medication errors.