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Facing the large variety of life-limiting conditions in children

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Abstract

Life-limiting conditions in children in specialized pediatric palliative care (PPC) are manifold. The “Together for Short Lives” (TfSL) association established four disease categories, which represent the most common illness trajectories. Better understanding the palliative care needs and symptoms of children within these TfSL groups will result in improved anticipation of clinical problems and tailored care. During this retrospective single-center cohort study, 198 children, adolescents, and young adults (CAYAs) were in PPC. Mean age at referral was 8.7 years (range 0.0–25.0), mean duration of care 355 days (range 1–2754). One hundred six (53.5%) CAYAs died during the study period. Sixty-five (32.8%) CAYAs were assigned to TfSL-1, 13 (6.6%) to TfSL-2, 49 (24.7%) to TfSL-3, and 71 (35.9%) to TfSL-4. Home visits were conducted on average every 9.6 days in TfSL-1, 18.9 days in TfSL-2, 31.7 days in TfSL-3, and 31.8 days in TfSL-4 (p value < 0.01).

Conclusions: Intensity of palliative care significantly differed between the TfSL groups. Neurological and gastrointestinal symptoms were most prominent across all TfSL groups. Symptom cluster analysis showed distinct clusters in TfSL-1 (cluster 1, fatigue/lack of appetite/nausea/somnolence; cluster 2, dyspnea/fear/myoclonus/seizures/spasticity) and TfSL-3/4 (cluster 1, spasticity; cluster 2, all other symptoms).

What is Known:

• The four TfSL (together for short lives) groups represent the four most common illness trajectories of pediatric palliative care patients.

• Better understanding the palliative care needs and symptoms of children within these four TfSL groups will result in improved anticipation of clinical problems and tailored care.

What is New:

• In our study, TfSL-1 represented the largest individual group of patients, also requiring the most intensive care (defined by the number of visits per days of care).

• Symptom cluster analysis revealed distinct symptom clusters in TfSL-1 and TfSL-3/4, which can be used to anticipate clinically common challenges in these patients.

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Acknowledgments

The authors thank the families for confiding in the palliative care team, all members of the palliative care team Duesseldorf for their great dedication in caring for the patients, Prof. Dr. Arndt Borkhardt for his support, and the “Elterninitiative Kinderkrebsklinik Duesseldorf e.V.” for long-standing financial support. The authors thank Caroline Elzner, ACOMED Statistik, Leipzig, who provided statistical analyses. JIH is funded by the Deutsche Forschungsgemeinschaft (DFG, HO 5456/3-1).

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Author notes

  1. Gisela Janßen and Michaela Kuhlen contributed equally to this work.

Authors and Affiliations

  1. Medical Faculty, Department of Pediatric Oncology, Hematology and Clinical Immunology, Center for Child and Adolescent Health, University of Duesseldorf, Duesseldorf, Germany

    Jessica I. Hoell, Hannah Weber, Jens Warfsmann, Laura Trocan, Gabriele Gagnon, Mareike Danneberg, Stefan Balzer, Gisela Janßen & Michaela Kuhlen

  2. Department of Pediatric Hematology and Oncology, Martin Luther University Halle-Wittenberg, Ernst-Grube-Str.40, 06120, Halle (Saale), Germany

    Jessica I. Hoell

  3. German Cancer Research Center (DKFZ), Heidelberg, Germany

    Jens Warfsmann

  4. German Cancer Consortium (DKTK), Dresden, Germany

    Jens Warfsmann

  5. ACOMED Statistik, Statistical Analyses, Leipzig, Germany

    Thomas Keller

  6. Swabian Children’s Cancer Center, University Children’s Hospital Augsburg, Augsburg, Germany

    Michaela Kuhlen

Authors
  1. Jessica I. Hoell
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  2. Hannah Weber
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  3. Jens Warfsmann
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  4. Laura Trocan
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  6. Mareike Danneberg
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  7. Stefan Balzer
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  8. Thomas Keller
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  9. Gisela Janßen
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  10. Michaela Kuhlen
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Contributions

JIH designed the study, drafted the manuscript, collected, and analyzed data. HW helped with the acquisition of data. JW performed data processing and statistical analysis. GG, LT, and SB cared for the patients, acquired data, and provided important clinical information. TK performed statistical analysis including symptom cluster analysis. GJ is the director of the PPCT, cared for the patients, acquired data, and provided important clinical information. HW, JW, GG, LT, SB, TK, and GJ critically reviewed and revised the manuscript for important intellectual content. MK conceptualized and designed the study, supervised data analysis, and drafted the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Jessica I. Hoell.

Ethics declarations

The study was conducted according to the Declaration of Helsinki and was approved by the ethics committee of Heinrich Heine University Duesseldorf, Germany, (reference number 4969) and written informed consent was obtained.

Conflict of interest

The authors declare that there is no conflict of interest.

Additional information

Communicated by Peter de Winter

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Hoell, J.I., Weber, H., Warfsmann, J. et al. Facing the large variety of life-limiting conditions in children. Eur J Pediatr 178, 1893–1902 (2019). https://doi.org/10.1007/s00431-019-03467-9

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  • DOI: https://doi.org/10.1007/s00431-019-03467-9

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