Among people with cystic fibrosis (CF), illness burden is multifaceted, and symptoms may fluctuate in intensity across a lifespan. Caregivers of people with CF may also experience distressing symptoms. Recent developments in CF care, including the availability of highly effective modulator therapies (HEMTs) and new palliative care guidelines promoting palliative care screening may help alleviate symptoms. The objective of this review was to present a narrative view of the recent literature on symptom burden in CF, new screening approaches informed by the Cystic Fibrosis Foundation (CFF) palliative care guidelines, and early data from studies examining the impact of HEMTs on CF symptom burden. A review of the relevant literature was conducted using Google Scholar and PubMed. Included articles covered approaches to burden assessment in CF and other chronic illnesses, epidemiology of CF symptom burden, the impact of HEMTs on symptom burden, and the CFF palliative care guidelines. A primary palliative care model implementing the CFF guidelines was also described. Results of this review show that while recent developments in CF care have led to a reduction in physical symptoms, mental health symptoms remain prevalent. Ongoing screening and triage can ensure that physical symptoms, psychological symptoms, social needs, practical problems, and communication concerns are addressed by care teams.
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http://dx.doi.org/10.3390/life13081620 | DOI Listing |
Purpose: In this study, we aimed to evaluate the association between the Extension for Community Healthcare Outcomes-Palliative Care (ECHO-PC; ECHO Model-Based comprehensive educational and telementoring intervention) for health care professionals (HCPs) and change in patient-reported quality-of-life (QOL; Functional Assessment of Cancer Therapy-General [FACT-G]) among patients with advanced cancer. We also examined the association between ECHO-PC and changes in symptom distress (Edmonton Symptom Assessment Scale [ESAS]), patient experience and satisfaction, and caregiver distress scores.
Methods: ECHO-PC Clinic sessions were conducted twice a month for 1 year by an interdisciplinary team of PC clinicians at the MD Anderson Cancer Center, with participation of experts in PC in sub-Saharan Africa, using standardized curriculum on the basis of PC needs in the region.
N Z Med J
January 2025
Professor, School of Social and Cultural Studies, Victoria University of Wellington, Wellington, New Zealand.
Aim: Patient barriers to accessing hospice and palliative care (PC) have been well studied. Important, yet less investigated, is how cancer patients whose hospice referrals were not accepted are being cared for. This article aims to understand the referral process from PC providers' perspectives and the implications of the current palliative system for patients, families and health professionals.
View Article and Find Full Text PDFJNCI Cancer Spectr
January 2025
Division of General Medicine, University of Michigan Medical School, Ann Arbor, MI, USA.
Background: Early palliative care is associated with better outcomes for patients with advanced-stage cancers. Using a novel data linkage, we assessed outpatient palliative care use before death and its association with end-of-life care intensity and variation across eight provider networks.
Methods: We linked Massachusetts Cancer Registry and the All-Payer Claims Database for individuals with commercial insurance, Medicaid or Medicare Advantage diagnosed with colorectal, lung, prostate, and breast cancers from 2010 through 2013 who died by December 31, 2014.
Pain
January 2025
Department of Population Health Sciences, Weill Cornell Medicine, New York, NY, United States.
Rapid declines in opioid analgesics dispensed in American communities since 2011 raise concerns about inadequate access to effective pain management among patients for whom opioid therapies are appropriate, especially for those living in racial/ethnic minority and socioeconomically deprived communities. Using 2011 to 2021 national data from the Automated Reports and Consolidated Ordering System and generalized linear models, this study examined quarterly per capita distribution of oxycodone, hydrocodone, and morphine (in oral morphine milligram equivalents [MMEs]) by communities' racial/ethnic and socioeconomic profiles. Communities (defined by 3-digit-zip codes areas) were classified as "majority White" (≥50% self-reported non-Hispanic White population) vs "majority non-White.
View Article and Find Full Text PDFQual Life Res
January 2025
Health Services Research Group, Hospital del Mar Research Institute, Barcelona, Spain.
Purpose: To systematically review qualitative studies on outcomes, needs, experiences, preferences, concerns and health-related quality of life (HRQoL) of people surviving cancer in Europe in the last decade.
Methods: Protocol registered ( https://www.crd.
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