Articles: caregivers.
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Palliative medicine · Feb 2021
Measures of financial burden for families dealing with serious illness: A systematic review and analysis.
Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. ⋯ To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.
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Spinal muscular atrophy (SMA) is a rare, diverse group of inherited neuromuscular disorders that cause degradation of the lower motor neurons, progressive muscle atrophy, and weakness. The natural history of SMA has changed significantly with an increased understanding of SMA pathophysiology and new technologies. As a result, affected individuals now have 3 disease-modifying therapies available for treatment. ⋯ This reinforces the importance of newborn screening as a mechanism for early diagnosis. Pharmacists are highly valued members of the healthcare team who play a pivotal role in the SMA care team. Therefore, pharmacists must be up-to-date on SMA's medical management, including the most current efficacy and safety data to assist providers, caregivers, and patients in selecting these agents and ensuring patients with SMA receive optimal and timely medical care.