@Article{duepublico_mods_00071779,
  author = 	{Zernikow, Boris
		and Szybalski, Katharina
		and H{\"u}bner-M{\"o}hler, Bettina
		and Wager, Julia
		and Paulussen, Michael
		and Lassay, Lisa
		and Jorch, Norbert
		and Weber, Carola
		and Schneider, Dominik T.
		and Jan{\ss}en, Gisela
		and Oommen, Prasad T.
		and Kuhlen, Michaela
		and Brune, Thomas
		and Wieland, Regina
		and Sch{\"u}ndeln, Michael
		and Kremens, Bernhard
		and L{\"a}ngler, Alfred
		and Prokop, Aram
		and Kiener, Rita
		and Niehues, Tim
		and Rose, Martina
		and Baumann-K{\"o}hler, Margit
		and P{\"o}ppelmann, Monika
		and Thorer, Heike
		and Irnich, Martin
		and Sinha, Kumar
		and Wolfe, Joanne
		and Schmidt, Pia},
  title = 	{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},
  year = 	{2018},
  month = 	{Dec},
  day = 	{18},
  keywords = 	{Palliative care; palliative medicine; pediatrics; quality of health care; symptom assessment; cancer},
  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{\thinspace}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{\thinspace}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 {\thinspace}<{\thinspace}0.001) as well as quality and satisfaction ratings of care ( p {\thinspace}<{\thinspace}0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p {\thinspace}={\thinspace}0.009). Along with this development, more families had the chance to plan the location of death ( p {\thinspace}={\thinspace}0.003), and more children died at the preferred location ( p {\thinspace}={\thinspace}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.},
  note = 	{deepgreen SAGE},
  note = 	{The author(s) disclosed receipt of the following financial support for the research of this article: The study was funded by the German Childhood Cancer Foundation.},
  note = 	{Dieser Beitrag ist mit Zustimmung des Rechteinhabers aufgrund einer (DFG-gef{\"o}rderten) Allianz- bzw. Nationallizenz frei zug{\"a}nglich.
<hr />This publication is with permission of the rights owner freely accessible due to an Alliance licence and a national licence (funded by the DFG, German Research Foundation) respectively.},
  note = 	{<p>Zernikow, B., Szybalski, K., H{\"u}bner-M{\"o}hler, B., Wager, J., Paulussen, M., Lassay, L., Jorch, N., Weber, C., Schneider, D. T., Jan{\ss}en, G., Oommen, P. T., Kuhlen, M., Brune, T., Wieland, R., Sch{\"u}ndeln, M., Kremens, B., L{\"a}ngler, A., Prokop, A., Kiener, R., {\ldots} Schmidt, P. (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. <em>Palliative Medicine</em>, 33(3), 381--391. <a href="https://doi.org/10.1177{\%}2F0269216318818022">https://doi.org/10.1177/0269216318818022</a></p>

<p>First Published<strong> </strong> December 12, 2018</p>},
  doi = 	{10.1177/0269216318818022},
  url = 	{https://duepublico2.uni-due.de/receive/duepublico_mods_00071779},
  url = 	{https://doi.org/10.1177/0269216318818022},
  file = 	{:https://duepublico2.uni-due.de/servlets/MCRFileNodeServlet/duepublico_derivate_00071595/Zernikow_et_al_Specialized_pediatric_palliative_care.pdf:PDF},
  language = 	{en}
}