Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.
Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.
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DOI：
10.1089/jpm.2020.0311
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发表时间：
2021-01
影响因子：
2.8
通讯作者：
Dellon EP
中科院分区：
文献类型：
--
作者：
Kavalieratos D;Georgiopoulos AM;Dhingra L;Basile MJ;Rabinowitz E;Hempstead SE;Faro A;Dellon EP
囊性纤维化（CF）影响全球超过70，000人及其家庭。虽然CF患者的结局继续改善，但它仍然是一种无法治愈的限制生命的疾病。CF患者在整个病程中需要处理广泛的症状和治疗负担，并面临复杂的医疗决策。虽然姑息治疗已被证明可以通过减轻严重疾病患者及其家人的疾病相关负担来减少痛苦，但对于改善CF患者结局所需的姑息治疗的各种交付模式的组成和结构知之甚少。囊性纤维化基金会（CFF）召集了一个由临床医生、研究人员、CF患者和家庭护理人员组成的专家小组，为CF姑息治疗的最佳实践模式制定共识建议。根据系统性文献综述和专家意见，制定了11项声明，并讨论了初级姑息治疗、专业姑息治疗和姑息治疗需求筛查。这些建议旨在全面解决姑息治疗需求，并改善处于疾病和发展各个阶段的CF患者及其护理人员的生活质量。
Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.
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影响因子：
4.7
作者：
Dellon, Elisabeth P.;Shores, Mitchell D.;Nelson, Katherine I.;Wolfe, Joanne;Noah, Terry L.;Hanson, Laura C.
通讯作者：
Hanson, Laura C.
影响因子：
5.2
作者：
Dellon, Elisabeth P.;Chen, Elaine;Cohen, Rubin I.
通讯作者：
Cohen, Rubin I.
影响因子：
45.3
作者：
Ferrell, Betty R.;Temel, Jennifer S.;Smith, Thomas J.
通讯作者：
Smith, Thomas J.
影响因子：
5.2
作者：
Baizano, Julie;Fresenius, Ashley;Dhingra, Lara
通讯作者：
Dhingra, Lara
DOI：
10.1177/1049909116629135
发表时间：
2017-05-01
影响因子：
1.9
作者：
Chen, Elaine;Killeen, Kathryn M.;Balk, Robert A.
通讯作者：
Balk, Robert A.