No abstract

The measurement properties of the newly developed Pediatric Quality of Life Inventory TM (PedsQL TM ) 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 TM 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 a = 0.93; total scale score for parent proxy-report a = 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 TM Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.

Poor discharge transition is evidence of a gap between evidence-based practices and current health care delivery. Pediatric SOT recipients are a vulnerable population at risk of complications during the discharge transition. The aim of this study was to investigate factors associated with the transition care from hospital to home. We studied the transition experience of parents of heart, liver, or kidney recipients to identify opportunities for improvement in discharge and post-discharge care processes and outcomes. Thirty-seven parents from three different pediatric transplant centers completed questionnaires on the day of hospital discharge and three wk following hospital discharge. Care coordination was associated with readiness for hospital discharge. Readiness for hospital discharge was subsequently associated with post-discharge coping difficulty, adherence difficulty with medical follow-up, and family impact. Identifying parents who are not ready to go home provides an opportunity to offer additional support services so parents can effectively manage their child's recovery and continuing care at home.

Nurses have a singular opportunity to enhance meaningful interactions and confidence building, ultimately promoting a successful transition home.

This is the author manuscript accepted for publication and has undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as

Transplant providers are challenged to determine appropriate interventions for patients and families due to limited published research regarding the context of the post-discharge experience from the perspective of parents of transplanted children. The purpose of this study is to describe the parent perspective of the transition from hospital to home following their child’s solid organ transplant. Within a mixed-methods design, 37 parents of pediatric heart, kidney and liver transplant recipients from three pediatric hospitals responded to qualitative interview questions on the day of hospital discharge and three weeks following hospital discharge. Insight to the discharge preparation process revealed necessary education components. Post-discharge themes were identified for coping, knowledge and adherence. The parents’ responses provide awareness as to specific stressors and concerns parents are faced with when their child is discharged from the hospital after solid organ transplant and opportunities for ways the transplant team can provide support.

Pediatric solid organ transplant 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 3-week, 3-month, and 6-months following discharge from the hospital. Care coordination (p = .02) and quality of discharge teaching (p < .01) was significantly associated with parent readiness for discharge. Readiness for hospital discharge was subsequently significantly associated with post-discharge coping difficulty (p = .02) at 3-weeks, adherence with medication administration (p = .03) at 3-months, and post-discharge coping difficulty (p = .04) and family management (p = .02) at 6-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.

Introduction: The purpose of this study is to validate the Readiness for Hospital Discharge Scale (RHDS) for use with parents of hospitalized children. PedRHDS is a structured tool for a discharge readiness assessment before pediatric discharge. Methods: Using combined data from four studies with 417 parents, psychometric testing and item reduction proceeded with principal component analysis for factor structure delineation, Cronbach's alpha for reliability estimation, and regression analysis for predictive validity. Results: A 23-item PedRHDS retained the a priori factor structure. Reliability ranged from 0.73 to 0.85 for the 23-item and 10-and 8-item short scales. PedRHDS (all forms) was associated with postdischarge coping difficulty (explaining 12%−16% of variance) and readmission (odds ratio = 0.71À0.80). Discussion: The PedRHDS and both short forms (PedRHDS-SF10 and PedRHDS-SF8) are reliable and valid measures of parental discharge readiness that can be used as outcome metrics of hospital care and risk indicators for postdischarge coping difficulty and readmission.