Short summary

This study aims to assess the impact of palliative care on non-curable pediatric cancer patients and their preferred place of death and created better alignment between preferred and actual place of death.

Rationale

Background Each year around 200 children and adolescents at the age of 0-18 are diagnosed with a malignant disease in Denmark. For the most part with curable possibilities. Nevertheless, a smaller group of pediatric patients will experience relapse or progression of their disease, and for a subset of these children with advanced cancer the curative options will be exhausted. For these children with advanced cancer without curative possibilities the treatment option will be of palliative nature.

Palliation in the pediatric area is a relatively new field in Denmark. During the years 2015 till 2017 five regional specialized Pediatric Palliative Care Teams were established. The purpose of the palliative work is to improve the quality of life for these children and their families, when faced with the challenges that are associated with life-threatening illness. International research has shown that pediatrics palliative care increases the quality of life for children and their families.

Relevance In this research project, we aim is to gain new knowledge of the impact of specialized palliative care of children with cancer, without curative treatment options on their preferred place of death and to evaluate if the implementation of palliative care units has created better alignment between preferred and actual place of death. The project will contribute to a better understanding of the impact of specialized palliative care for terminally ill pediatric cancer patients. A better understanding of the patients and their families' wishes in this phase of the treatment can contribute to bettering and streamlining the care, and at the end bettering the quality of life for the child and their family.

Description of the cohort

Study design A retrospective comparative cohort study. In the study we will evaluate the preferred place of death for children with advanced cancer, before and after the implementation of the Pediatric Palliative Care Teams in the Region of Southern Denmark. In addition, we will investigate whether specialized palliative work has created better accordance between preferred and actual place of birth, and if more children die in their own home.

Patient group The patient group will consist of children and adolescents aged between 0-18 that at their time of diagnosis, treated at the H.C. Andersen Children's Hospital who died from cancer during 2002-2022. The Pediatric Palliative Care Team, H.C. Andersen Children's Hospital, Odense University Hospital was established in September 2016. Between September 2016 and December 2022, 24 pediatric oncological patients have passed. These are compared to historical controls from the time between 2002-2016, which is 81 patients. Making the expected number of included patients in this study 105 patients.

Data and biological material

Data sources The data used in this study is from a retrospective journal review.

Collaborating researchers and departments

Mathias Rathe, Associate Professor, Ph.D., H. C. Andersen Children's Hospital, Odense University Hospital and Department of Clinical Research at the Faculty of Health Sciences, University of Southern Denmark

Martin Lehmann Boesen, Chief Physician, Pediatric Palliative Care Team, H. C. Andersen Children's Hospital, Odense University Hospital