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Symptoms assessment and management of children

As with palliative care for adults, symptom assessment and management is a critical component of pediatric palliative care as it improves quality of life, gives children and families a sense of control, and prolongs life in some cases. The general approach to assessment and management of distressing symptoms in children by a palliative care team is as follows:

The most common symptoms in children with severe chronic disease appropriate for palliative care consultation are weakness, fatigue, pain, poor appetite, weight loss, agitation, lack of mobility, shortness of breath, nausea and vomiting, constipation, sadness or depression, drowsiness, difficulty with speech, headache, excess secretions, anemia, pressure area problems, anxiety, fever, and mouth sores. The most common end of life symptoms in children include shortness of breath, cough, fatigue, pain, nausea and vomiting, agitation and anxiety, poor concentration, skin lesions, swelling of the extremities, seizures, poor appetite, difficulty with feeding, and diarrhea. In older children with neurologic and neuromuscular manifestations of disease, there is a high burden of anxiety and depression that correlates with disease progression, increasing disability, and greater dependence on carers. From the caregiver's perspective, families find changes in behavior, reported pain, lack of appetite, changes in appearance, talking to God or angels, breathing changes, weakness, and fatigue to be the most distressing symptoms to witness in their loved ones.

As discussed above, within the field of adult palliative medicine, validated symptoms assessment tools are frequently utilized by providers, but these tools lack essential aspects of children's symptom experience. Within pediatrics, there is not a comprehensive symptoms assessment widely employed. A few symptoms assessment tools trialed among older children receiving palliative care include the Symptom Distress Scale, and the Memorial Symptom Assessment Scale, and Childhood Cancer Stressors Inventory. Quality of life considerations within pediatrics are unique and an important component of symptoms assessment. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) is a standardized parent-proxy report which assesses cancer treatment-related symptoms (focusing mainly on pain and nausea). But again, this tool does not comprehensively assess all palliative are symptoms issues. Symptom assessment tools for younger age groups are rarely utilized as they have limited value, especially for infants and young children who are not at a developmental stage where they can articulate symptoms.