A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide

Cutaneous lesions in COVID-19 patients

Aside from the typical respiratory symptoms resulting from an infection with SARS-CoV-2, there are reports of cutaneous lesions in patients diagnosed with a SARS-CoV-2 infection. There are reports of multiple groups of skin lesions presenting in different stages of this diagnosis. The most common reported groups are chilblains, vesicular eruptions, morbilliformexanthems, acute urticaria and livedo. It is unlikely that all these groups of skin lesions are distinctive of an infection with SARS-CoV-2. Chilblains of new onset, however, could possibly be a distinctive symptom of a mild/asymptomatic infection with SARS-CoV-2. It is recommended to consider an infection with SARS-CoV-2 in the differential diagnosis in patients presenting with these groups of skin lesions. Consider testing for SARS-CoV-2 and consult the dermatologist if needed, especially in case of chilblains, to ensure histopathological evaluation of the skin lesions to increase knowledge of the underlying pathophysiology

Cutaneous lesions in COVID-19 patients

Aside from the typical respiratory symptoms resulting from an infection with SARS-CoV-2, there are reports of cutaneous lesions in patients diagnosed with a SARS-CoV-2 infection. There are reports of multiple groups of skin lesions presenting in different stages of this diagnosis. The most common reported groups are chilblains, vesicular eruptions, morbilliformexanthems, acute urticaria and livedo. It is unlikely that all these groups of skin lesions are distinctive of an infection with SARS-CoV-2. Chilblains of new onset, however, could possibly be a distinctive symptom of a mild/asymptomatic infection with SARS-CoV-2. It is recommended to consider an infection with SARS-CoV-2 in the differential diagnosis in patients presenting with these groups of skin lesions. Consider testing for SARS-CoV-2 and consult the dermatologist if needed, especially in case of chilblains, to ensure histopathological evaluation of the skin lesions to increase knowledge of the underlying pathophysiology

A Dutch paediatric palliative care guideline:a systematic review and evidence-based recommendations for symptom treatment

Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care. Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values. Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values. Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide.</p

Additional file 1 of A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment

Additional file 1: Appendix A. Paediatric palliative care guideline panel. Appendix B. Working structure for guideline development. Appendix C. Guideline development process. Appendix D. Clinical questions. Appendix E. Search strategies. Appendix F. Inclusion criteria. Appendix G. Criteria for grading levels of evidence and strength of recommendations. Appendix H. Flowchart of the study selection process. Appendix I. Results of the systematic literature search: included studies; Appendix J. Evidence tables; Appendix K. Summary of findings tables, appraisal of evidence, and conclusions of evidence