Paediatric liver transplantation-improving health care through needs assessment, screening and interventions:
Sanna Higgen1, Jana Winzig1, Lene Marie Johannsen1
1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Insights
This project investigates the needs of children and families after paediatric liver transplantation (pLTX). It aims to develop a screening tool and information materials to improve psychosocial care and recognize mental health issues in pediatric transplant recipients.
Area of Science:
- Pediatric gastroenterology and hepatology
- Transplant surgery
- Child psychology and psychiatry
Background:
- Paediatric liver transplantation (pLTX) significantly improves quality of life but presents unique challenges for children and families.
- There is a critical gap in understanding the specific needs and healthcare service utilization post-pLTX.
- Mental health issues in pediatric transplant recipients often go unrecognized, necessitating targeted support.
Purpose of the Study:
- To comprehensively investigate the psychosocial situation of children and their families following pLTX.
- To develop and implement a needs-based screening tool for distress in pediatric transplant recipients.
- To create accessible informational materials for families navigating the post-transplant journey.
Main Methods:
- A multimethod approach combining quantitative (questionnaires, n=125) and qualitative (interviews, n=10-12 per group) data collection.
- Development of a distress screening tool through literature review and interviews (n=10-20) with families and healthcare professionals.
- Piloting the screening tool in two clinics and subsequent development of informational materials based on study findings.
Main Results:
- Recommendations for comprehensive, needs-based psychosocial care will be derived from integrated quantitative and qualitative data.
- A validated distress screening tool will be developed and piloted for early identification of mental health concerns.
- Informational materials will be co-developed with families and healthcare professionals to enhance support.
Conclusions:
- Addressing the psychosocial needs of pediatric liver transplant recipients and their families is crucial for optimal outcomes.
- A validated screening tool and targeted information can improve the recognition and management of mental health challenges.
- This project will provide evidence-based resources to support the holistic care of children post-pLTX.
Introduction:
Paediatric liver transplantation (pLTX) is a life-saving procedure that can improve the quality of life and physical activity of children. However, the condition after pLTX presents a number of challenges for the children and their families. There is a lack of data on specific needs and utilisation of healthcare services after pLTX. Also, symptoms of mental health problems in children often remain unrecognised. Hence, the overall aim of this project is to investigate the situation of children and their families after pLTX and to develop and implement a screening tool and information material for children and their families.
Methods And Analysis:
The project will use a multimethod approach to investigate the objectives of the three study arms. In study arm 1, recommendations for comprehensive and needs-based psychosocial care will be derived from quantitative data (questionnaires) and qualitative data (interviews with children after liver transplantation, their caregivers, siblings and healthcare professionals (HCPs)). The aims are to collect quantitative data from n=125 cases and to conduct n=10-12 interviews per group. In study arm 2, a distress screening will be developed based on a literature search and n=10-20 interviews with families and HCPs. The screening will subsequently be piloted in two clinics for a period of 6 months. Finally, in study arm 3, findings from study arms 1 and 2 will be used to develop informational materials for families affected. The study will be conducted at the Department of Medical Psychology and the Department of Pediatrics of the University Medical Center Hamburg-Eppendorf in Germany in cooperation with the transplant centre of the University Children's Hospital Essen.
Ethics And Dissemination:
The study has been approved by the Local Psychological Ethics Committee of the Center for Psychosocial Medicine of the University Medical Center Hamburg-Eppendorf (LPEK-0618) and the Ethics Committee of the University Medicine Duisburg/Essen (23-11416-BO). The findings of the study will be presented at national and international conferences and will be published in peer-reviewed scientific journals. Written informed consent will be obtained from all participants.
Registration:
Open Science Framework (OSF): https://osf.io/rdw4b.
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