Palliative Care for Patients with Cystic Fibrosis #265

Estrada-Veras, Juvianee; Groninger, Hunter

doi:10.1089/jpm.2013.9515

Cited by 11 publications

(10 citation statements)

References 9 publications

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“…The short-term mortality in our cohort is among the lowest reported among critically ill adults with CF, with prior studies describing mortality ranging from 0% [ 13 ] to 73% [ 12 ]. Our findings also highlight the previously noted low use of hospice and palliative care services in general among CF patients [ 36 , 37 ], underscoring future opportunities for practice improvement. Short-term mortality rose with age, likely reflecting the corresponding incremental burden of chronic illness and organ failure.…”

Section: Discussionsupporting

confidence: 76%

Critical illness among adults with cystic fibrosis in Texas, 2004–2013: Patterns of ICU utilization, characteristics, and outcomes

Oud

2017

PLoS ONE

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ObjectiveAvailable reports on critically ill adults with cystic fibrosis (CF) suggest improving short-term outcomes. However, there is marked heterogeneity in reported findings, with studies mostly based on single-centered data, limiting generalizability. We sought to examine population-level patterns of demand for critical care resources, and the characteristics, resource utilization, and outcomes of ICU-managed adults with CF.MethodsWe used the Texas Inpatient Public Use Data File to identify ICU admissions with CF aged ≥18 years in Texas between 2004–2013. We examined ICU utilization at population level (using CF Foundation annual reports) and, among ICU admissions, socio-demographic characteristics, burden of comorbidities, organ failure, life-support utilization and hospital disposition. Linear regression and multilevel logistic regression were used to examine temporal trends and predictors of short-term mortality (hospital death and discharge to hospice), respectively.ResultsOf 9,579 hospitalizations of adults with CF, 1,249 (13%) were admitted to ICU. The incidence of ICU admission among adults with CF in Texas increased between 2004–2005 and 2012–2013 from 16.7 to 19.2 per 100 person-years (p = 0.0181), with ICU admissions aged ≥30 years accounting for 80.3% of the change. Among ICU admissions the following changes were noted between 2004–2005 and 2012–2013: any organ failure 30.2% vs. 56.3% (p = 0.0004), mechanical ventilation 11.5% vs. 19.2% (p = 0.0216), and hemodialysis 1.0% vs. 8.1% (p = 0.0007). Short-term mortality for the whole cohort and for those with mechanical ventilation was 11.4% and 41.8%, respectively, with corresponding home discharge among survivors 84% and 62.1%, respectively. Key predictors (adjusted odds ratios [aOR (95% CI)]) of short-term mortality included age ≥45 years (2.051 [1.231–3.415]), female gender (1.907 [1.237–2.941]), and mechanical ventilation (7.982 [5.001–12.739]).ConclusionsAdults with CF had high and rising population-level burden of critical illness. Although ICU admissions were increasingly older and sicker, the majority survived hospitalization, with most discharged home, supporting short-term benefits of critical care in the present cohort.

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Section: Discussionsupporting

confidence: 76%

Critical illness among adults with cystic fibrosis in Texas, 2004–2013: Patterns of ICU utilization, characteristics, and outcomes

Oud

2017

PLoS ONE

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“…Life expectancy of children with CF was so low in the middle of the last century that most died before attending school. Remarkable progress has led to intense improvements in length and QOL for patients with CF, including options for lung transplants and gene therapies, such that those born in the 21st century are expected to live into middle-age [ 44 ]. As a result this chronic, progressive disease presents complex and ongoing challenges in management, and research suggests that palliative care consultation early in the process could be an important component of treatment [ 45 ].…”

Section: Palliative Care and Cfmentioning

confidence: 99%

The potential of palliative care for patients with respiratory diseases

Narsavage¹,

Chen²,

Korn³

et al. 2017

Breathe

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Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians.Educational aimsTo explain the basic domains of palliative care applicable to chronic respiratory diseases.To review palliative care interventions for patients with chronic respiratory diseases.To outline a checklist for clinicians to use in practice, based on the domains of palliative care.To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases.

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“… 55 However, institutional resources often limit access, such that most palliative care specialists serve patients with varied medical conditions in inpatient settings, while outpatient palliative care programs are almost exclusively focused on oncology and may devote little time to CF care; these barriers are in addition to shortages in the SPC workforce. 49 Given the unique needs of individuals with CF, the growing recognition that palliative care services should be adapted to address these needs, 31 and a paucity of CF-specific educational resources for palliative care specialists, 58 CF care teams must support palliative care specialists in understanding CF-specific concerns. 54 , 59 Additionally, open communication and thoughtful partnerships will facilitate role delineation, which is important to building trust and reducing duplication of services.…”

Section: Resultsmentioning

confidence: 99%

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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Palliative Care for Patients with Cystic Fibrosis #265

Cited by 11 publications

References 9 publications

Critical illness among adults with cystic fibrosis in Texas, 2004–2013: Patterns of ICU utilization, characteristics, and outcomes

Critical illness among adults with cystic fibrosis in Texas, 2004–2013: Patterns of ICU utilization, characteristics, and outcomes

The potential of palliative care for patients with respiratory diseases

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

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