Zernikow, Boris, Szybalski, Katharina, Huebner-Moehler, Bettina, Wager, Julia ORCID: 0000-0003-4493-6356, Paulussen, Michael, Lassay, Lisa, Jorch, Norbert, Weber, Carola, Schneider, Dominik T., Janssen, Gisela, Oommen, Prasad T., Kuhlen, Michaela, Brune, Thomas, Wieland, Regina, Schuendeln, Michael, Kremens, Bernhard, Laengler, Alfred, Prokop, Aram, Kiener, Rita, Niehues, Tim, Rose, Martina, Baumann-Koehler, Margit, Poeppelmann, Monika, Thorer, Heike, Irnich, Martin, Sinha, Kumar, Wolfe, Joanne and Schmidt, Pia (2019). 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. Palliat. Med., 33 (3). S. 381 - 392. LONDON: SAGE PUBLICATIONS LTD. ISSN 1477-030X

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Abstract

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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Zernikow, BorisUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Szybalski, KatharinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Huebner-Moehler, BettinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wager, JuliaUNSPECIFIEDorcid.org/0000-0003-4493-6356UNSPECIFIED
Paulussen, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lassay, LisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Jorch, NorbertUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Weber, CarolaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schneider, Dominik T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Janssen, GiselaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Oommen, Prasad T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kuhlen, MichaelaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Brune, ThomasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wieland, ReginaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schuendeln, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kremens, BernhardUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Laengler, AlfredUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Prokop, AramUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kiener, RitaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Niehues, TimUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rose, MartinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Baumann-Koehler, MargitUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Poeppelmann, MonikaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Thorer, HeikeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Irnich, MartinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sinha, KumarUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Wolfe, JoanneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schmidt, PiaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-156047
DOI: 10.1177/0269216318818022
Journal or Publication Title: Palliat. Med.
Volume: 33
Number: 3
Page Range: S. 381 - 392
Date: 2019
Publisher: SAGE PUBLICATIONS LTD
Place of Publication: LONDON
ISSN: 1477-030X
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
LIFE; END; PARENTS; DEATH; HOME; AVAILABILITY; DISTRESS; OUTCOMES; PLACEMultiple languages
Health Care Sciences & Services; Public, Environmental & Occupational Health; Medicine, General & InternalMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/15604

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