Hannah Gsell
A5000296883- Childhood Cancer Survivors' Quality of Life
- Family Support in Illness
- Palliative Care and End-of-Life Issues
- Adolescent and Pediatric Healthcare
- Health and Medical Studies
- Mental Health and Patient Involvement
- Cancer survivorship and care
- Family and Patient Care in Intensive Care Units
- Mobile Health and mHealth Applications
Instituto de Investigación Sanitaria La Fe
2023
Austrian Cluster for Tissue Regeneration
2022
Background To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of Survivorship Passport (SurPass) has been invented. Within European PanCareSurPass project, semiautomated interoperable SurPass (version 2.0) will be optimized, implemented, evaluated at 6 LTFU centers representing countries 3 distinct health system scenarios: (1) national electronic information systems (EHISs) in Austria Lithuania, (2) regional or local EHISs...
Abstract Background Patient and public involvement engagement (PPIE) in healthcare research is crucial for effectively addressing patients' needs setting appropriate priorities. However, there a lack of awareness adequate methods practicing PPIE, especially vulnerable groups like childhood cancer survivors. Aims This project aimed to develop evaluate actively involve pediatric oncological patients, survivors, their caregivers developing relevant questions practical study designs. Methods...
Abstract Background Childhood cancer survivors face high risks of adverse late health effects. Long‐term follow‐up care for childhood is crucial to improve their and quality life. However, implementation remains a challenge. To support high‐quality long‐term care, we explored expected barriers facilitators establishing this among healthcare providers from four European clinics. Methods A qualitative study was conducted using focus groups comprising 30 in total. The semi‐structured interview...
Abstract BACKGROUND Neuropsychological (i.e. cognitive, emotional and social) sequelae after pediatric brain tumors (PBT) can severely impair daily-life participation consequently quality of life. Long-term access to appropriate interventions is therefore essential. Previous studies on effectiveness have recommended multi-component tailored the specific neuropsychological impairments unique needs survivors. Hence, before conducting a new intervention study, we carried out participative...
Abstract Purpose To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres Europe. Methods Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information technology (IT) specialists, others, participated online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, Information & IT-related aspects of SurPass were evaluated. Results The...
Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of treatment throughout their lives. There is a lack evidence-based guidelines on optimal strategies period to 5 years after diagnosis. We aimed address this gap by developing recommendations short-term based existing long-term follow-up (LTFU) care guidelines. The guideline working group, consisting healthcare professionals, parents survivor representatives 10...
<sec> <title>BACKGROUND</title> To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of Survivorship Passport (SurPass) has been invented. Within European PanCareSurPass project, semiautomated interoperable SurPass (version 2.0) will be optimized, implemented, evaluated at 6 LTFU centers representing countries 3 distinct health system scenarios: (1) national electronic information systems (EHISs) in Austria Lithuania, (2)...
Abstract PURPOSE: Advances in treatment have increased survival rates and quality of life pediatric CNS tumor patients leading to a growing number long-term survivors. However, there is sufficient clinical scientific evidence for the need highly specialized lifelong follow-up care due multidimensional late effects. Furthermore, adolescence young adulthood are challenging age periods when frequently get lost potentially having severe impact on health well-being. Since 2020, we established...