ArticleJournal of pain and symptom management2010
Caregiver perspectives on discussions about the use of intensive treatments in cystic fibrosis.
Article in Journal of pain and symptom management, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.Journal of palliative medicine · 2021Guideline
- Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.Frontiers in psychology · 2022Article
- Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with Cystic Fibrosis, Their Caregivers, and Clinicians: Results of a Content Analysis.Journal of palliative medicine · 2021Article
- The Motion of the Italian National Bioethics Committee on Aggressive Treatment towards Children with Limited Life Expectancy.Healthcare (Basel, Switzerland) · 2020Article
- Information, Sharing, and Self-Determination: Understanding the Current Challenges for the Improvement of Pediatric Care Pathways.Frontiers in pediatrics · 2020Article
- Keeping all options open: Parents' approaches to advance care planning.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Article
- Cystic fibrosis papers of the year 2010-2011.Journal of the Royal Society of Medicine · 2012Review
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
contextIntensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes.
objectivesWe aimed to describe caregivers' perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease.
methodsWe conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions.
resultsTwenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability.
conclusionsDiscussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.