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- Ashizawa, T., et al.
(author)
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Consensus-based care recommendations for adults with myotonic dystrophy type 1
- 2018
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In: Neurology-Clinical Practice. - : Ovid Technologies (Wolters Kluwer Health). - 2163-0402 .- 2163-0933. ; 8:6, s. 507-520
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Research review (peer-reviewed)abstract
- Purpose of review Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit. Recent findings The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations. The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.
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- Serezal, I. Gallais, et al.
(author)
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End-of-life care for hospitalized patients with metastatic melanoma in France : a nationwide, register-based study
- 2016
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In: British Journal of Dermatology. - : Oxford University Press (OUP). - 0007-0963 .- 1365-2133. ; 175:3, s. 583-592
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Journal article (peer-reviewed)abstract
- BackgroundAlthough the aggressiveness of end-of-life cancer care has come under great scrutiny over the past two decades, little is known about the intensity of care and treatments in the last months of life of patients with metastatic melanoma. ObjectivesTo measure the prevalence of aggressive cancer care use, and to assess the frequency of palliative care referral over the course of the last 3 months of life of hospitalized patients who died from metastatic melanoma. MethodsA nationwide register-based study in France was carried out, including all hospitalized adults aged 20 years who died from metastatic melanoma in metropolitan France between 2010 and 2013. ResultsOf 3889 patients who died from metastatic melanoma, 519% received chemotherapy in the last 3 months before death, 259% in the last month, 129% in the last 2 weeks and 76% in the last week. On average, patients were hospitalized for 317 days over the course of their last 3 months of life. During the final month before death, 120% of patients received radiation therapy, 140% received blood transfusion, 121% were transferred into an intensive care unit and 197% remained hospitalized continuously. Palliative care needs were identified in 784% of patients, with variations according to the type of facility. In total 17% of all patients died in palliative care inpatient units. ConclusionsTreatment intensity near the end of life of patients with metastatic melanoma raises concerns for the quality of care. There is a need for clinical guidelines and adequate support to facilitate patient-physician communication and to improve access to palliative care services.
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