Clinical Practice Guideline: Palliative Care for Children and Adolescents With Cancer.
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BACKGROUND: Despite recent advances in pediatric oncology, 15% of children and adolescents with cancer in Germany (approx. 350 per year) die of their disease. Even when the unfavorable prognosis is clear early on, patients often do not receive palliative care until shortly before death when the symptom burden is high. This causes unnecessary distress for everyone involved. METHODS: Systematic searches for pertinent guidelines and scientific publications up to 2023/2024 were carried out in accordance with the AWMF specifications for S3-level clinical practice guidelines. Of the 17 821 primary publications screened (databases: PubMed, Embase, Cochrane), 66 were used as sources of evidence for the guideline recommendations. Individual recommendations from three adult guidelines were also adopted after appropriate adjustment for the special situation and needs of children and adolescents. RESULTS: Evidence levels were mostly low or very low. 68 recommendations were developed, including: for care structures, the proactive implementation of specialized palliative care for patients with an unfavorable prognosis; for advance care planning, the need for open, structured communication processes and for support with the creation of advance care documents; for dyspnea (prevalence, 12-80%), the central role and safety of opioids and non-pharmacological measures such as positioning and ventilator therapy; for pain (prevalence, 62-92%), the importance of a comprehensive, multimodal approach, with numerous recommendations concerning medications (selection and application), non-pharmacological measures (such as positioning and distraction), and the importance of communication, patient education, and the structured assessment of pain. CONCLUSION: Controlled trials are needed to provide higher-level evidence on palliative care interventions for children and adolescents with cancer. The close collaboration of pediatric oncologists and specialists in pediatric palliative medicine is a key component of patient- and family-centered care.