Articles: palliative-care.
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Palliative medicine · Mar 2021
Multicenter StudyDevelopment and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective study.
Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. ⋯ A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.
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J Pain Symptom Manage · Mar 2021
ReviewPalliative care in the Greater China region: a systematic review of needs, models and outcomes.
There is rapidly increasing need for palliative care in Greater China because of rapidly aging populations. ⋯ Palliative care services within Greater China should pay more attention to management of nonmalignant disease and to integration into primary services. Policy support is key to establishing culturally appropriate person-centered services.
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Background: Nearly 3 million U. S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent. ⋯ The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%). Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.
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J Pain Symptom Manage · Mar 2021
ReviewUser-centered design of the consideRATE questions, a measure of people's experiences when they are seriously ill.
No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. ⋯ Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.