Children with ultra-rare or complex rare diseases are routinely excluded from research studies because of their conditions, creating a health disparity. However, new statistical techniques make it possible to study small samples of heterogeneous populations. We propose to study the palliative care needs of family caregivers of children with ultra-rare diseases and to pilot test a palliative care needs assessment and advance care planning intervention to facilitate discussions about the future medical care choices families are likely to be asked to make for their child.
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Beck Anxiety Inventory
Timeframe: Change from Baseline Anxiety at 3 Months Post-Enrollment
Functional Assessment of Chronic Illness Therapy (FACIT)- Spiritual Well-Being Scale, Version 4
Timeframe: Change from Baseline Spiritual Well-Being at 3 Months Post-Enrollment
Advance Care Plan Document for Children With Rare Diseases
Timeframe: Change from Baseline ACP Documentation in the Electronic Health Record at 12 weeks Post-Enrollment
Days in Palliative Care Prior to Death
Timeframe: 12 weeks Post-Enrollment
Hospitalizations
Timeframe: Change from Baseline to Frequency at 12 weeks Post-Enrollment
Place of Death
Timeframe: 12 weeks Post-Enrollment