Opportunities to Improve Utilization of Palliative Care Among Adults With Cystic Fibrosis: A Systematic Review

Marmor, MF; Jonas, Andrea; Mirza, Alicia A.; Rad, Elika; Wong, Henry Sung Ching; Aslakson, Rebecca; Ast, Katherine; Carroll, Thomas; Dzeng, Elizabeth; Harrison, Krista L.; Kaye, Erica C.; LeBlanc, Thomas W.; Lo, Shelly S.; McKenna, Kelly; Nageswaran, Savithri; Powers, James S.; Rotella, Joseph; Ullrich, Christina; Vickey, Theresa

doi:10.1016/j.jpainsymman.2019.08.017

Cited by 6 publications

(2 citation statements)

References 26 publications

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“…1 Yet, the multifactorial burdens of the disease continue to profoundly affect the lives of individuals with CF and their families. 2 CF-related suffering encompasses physical symptoms (e.g., pain, dyspnea, fatigue), emotional distress (e.g., anxiety, depression), impaired function, social isolation, role limitations, treatment-related burden, and existential distress. 2,3 Palliative care is the overarching approach to care focused on relieving suffering and improving quality of life (QoL) for individuals living with serious illness and their caregivers, from the time of diagnosis forward.…”

Section: Introductionmentioning

confidence: 99%

“…2 CF-related suffering encompasses physical symptoms (e.g., pain, dyspnea, fatigue), emotional distress (e.g., anxiety, depression), impaired function, social isolation, role limitations, treatment-related burden, and existential distress. 2,3 Palliative care is the overarching approach to care focused on relieving suffering and improving quality of life (QoL) for individuals living with serious illness and their caregivers, from the time of diagnosis forward. 4 It is a clinical specialty practiced by trained clinicians (i.e., specialty palliative care [SPC]), and may also be delivered by primary providers, including CF care teams (i.e., ''primary'' palliative care [PPC]).…”

Section: Introductionmentioning

confidence: 99%

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Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines

Kavalieratos

Georgiopoulos

Dhingra

et al. 2021

Journal of Palliative Medicine

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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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Section: Introductionmentioning

confidence: 99%