Specialized pediatric palliative care services for children dying from cancer : a repeated cohort study on the developments of symptom management and quality of care over a 10-year period

GND
114687927
ORCID
0000-0001-5875-3775
Affiliation
Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children’s and Adolescents’ Hospital, Datteln, Germany
Zernikow, Boris;
Affiliation
Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children’s and Adolescents’ Hospital, Datteln, Germany
Szybalski, Katharina;
Affiliation
Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children’s and Adolescents’ Hospital, Datteln, Germany
Hübner-Möhler, Bettina;
GND
1051767563
Affiliation
Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children’s and Adolescents’ Hospital, Datteln, Germany
Wager, Julia;
Affiliation
Children’s and Adolescents’ Hospital Datteln and Department of Pediatrics, School of Medicine, Faculty of Health, Witten/Herdecke University, Datteln, Germany
Paulussen, Michael;
Affiliation
University Hospital Aachen, Division of Pediatric Hematology, Oncology and Stem Cell Transplantation, Department of Pediatrics, RWTH Aachen University, Aachen, Germany
Lassay, Lisa;
Affiliation
Department of Pediatrics, Protestant Hospital Bielefeld, Bielefeld, Germany
Jorch, Norbert;
GND
130237310
Affiliation
Department of Pediatric Oncology, Hematology and Immunology, University Hospital Bonn, Bonn, Germany
Weber, Carola;
GND
128932821
Affiliation
Division of Pediatric Hematology and Oncology, Department of Pediatrics, Hospital Dortmund, Dortmund, Germany
Schneider, Dominik T.;
Affiliation
Department of Pediatric Oncology, Hematology and Clinical Immunology, Medical Faculty, University Hospital Düsseldorf, Düsseldorf, Germany
Janßen, Gisela;
Affiliation
Department of Pediatric Oncology, Hematology and Clinical Immunology, Medical Faculty, University Hospital Düsseldorf, Düsseldorf, Germany
Oommen, Prasad T.;
GND
124082548
Affiliation
Department of Pediatric Oncology, Hematology and Clinical Immunology, Medical Faculty, University Hospital Düsseldorf, Düsseldorf, Germany
Kuhlen, Michaela;
Affiliation
Department of Pediatrics, Hospital Lippe-Detmold, Detmold, Germany
Brune, Thomas;
GND
17287579X
LSF
13293
Affiliation
Hematology/Oncology, Pediatrics III, University Hospital Essen, Essen, Germany
Wieland, Regina;
GND
123087341
ORCID
0000-0001-7495-9060
LSF
13197
Affiliation
10 Hematology/Oncology, Pediatrics III, University Hospital Essen, Essen, Germany
Schündeln, Michael;
GND
1214721192
LSF
14469
Affiliation
Hematology/Oncology, Pediatrics III, University Hospital Essen, Essen, Germany
Kremens, Bernhard;
GND
114136076
Affiliation
Gemeinschaftskrankenhaus Herdecke and Integrative Pediatrics, School of Medicine, Faculty of Health, Witten/Herdecke University, Herdecke, Germany
Längler, Alfred;
GND
1066498393
Affiliation
Department of Pediatric Hematology/Oncology, Children’s Hospital Köln, Köln, Germany
Prokop, Aram;
Affiliation
Department of Paediatric Oncology and Hematology, Policlinic for Children and Adolescents, University Hospital Köln, Köln, Germany
Kiener, Rita;
GND
1042695857
Affiliation
Centre for Pediatrics and Adolescent Medicine, HELIOS Hospital Krefeld, Krefeld, Germany
Niehues, Tim;
GND
1154872920
Affiliation
Department for Children and Adolescents, Johannes Wesling Hospital Minden, Bochum University, Minden, Germany
Rose, Martina;
GND
115582185
Affiliation
Department of Paediatric Hematology and Oncology, Policlinic for Children and Adolescents, University Hospital Münster, Münster, Germany
Baumann-Köhler, Margit;
GND
121012034
Affiliation
Department of Paediatric Hematology and Oncology, Policlinic for Children and Adolescents, University Hospital Münster, Münster, Germany
Pöppelmann, Monika;
GND
1057947261
Affiliation
Department of Paediatric Hematology and Oncology, Policlinic for Children and Adolescents, University Hospital Münster, Münster, Germany
Thorer, Heike;
GND
120485745
Affiliation
Department of Paediatric Hematology and Oncology, Asklepios Hospital Sankt Augustin GmbH, Sankt Augustin, Germany
Irnich, Martin;
GND
121870715
Affiliation
Department of Pediatrics, Helios Medical Centre, Witten-Herdecke University, Wuppertal, Germany
Sinha, Kumar;
Affiliation
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston Children’s Hospital, Harvard Medical School, Boston, MA, USA
Wolfe, Joanne;
GND
1060014017
Affiliation
Paediatric Palliative Care Centre and German Paediatric Pain Centre, Children’s and Adolescents’ Hospital, Datteln, Germany
Schmidt, Pia

Background: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing.

Aim: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care.

Design: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015). Departments invited parents whose children died due to cancer 5 years earlier to participate. Identical semi-structured interviews were conducted with each cohort by the Survey of Caring for Children with Cancer. In addition, departments provided information on their pediatric palliative care infrastructure.

Participants: In total, 124 families participated; 73% of interviews were conducted with mothers, 18% with fathers, and 9% with both parents. Results: Parents’ perception of symptom occurrence, symptom burden, and effectiveness of symptom-related treatment remained stable over the 10-year period. Over time, the availability of pediatric palliative care ( p  < 0.001) as well as quality and satisfaction ratings of care ( p  < 0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p  = 0.009). Along with this development, more families had the chance to plan the location of death ( p  = 0.003), and more children died at the preferred location ( p  = 0.001).

Conclusion: Advances in the availability of pediatric palliative care were associated with improvement in some aspects of quality of care (e.g. location of death) while other aspects, such as effectiveness of symptom management, remained unchanged. Further research is required to determine whether additional improvement in structural quality may increase the effectiveness of symptom management.

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