Evidence map›Paper›PMID 36126995›Full record

ArticleBMJ open respiratory research2022

Integrating specialist palliative care to improve care and reduce suffering: cystic fibrosis (InSPIRe:CF) - study protocol for a multicentre randomised clinical trial.

Jane Lowers, Elisabeth P Dellon, Anne Stephenson, Robert Arnold, Andrew Althouse, Kwonho Jeong, Ethan Dubin, Jesse Soodalter, Cade Hovater, Marie Bakitas and 9 more

Open access · goldAbstract readClinical Trial Protocol
In one paragraph

Article in BMJ open respiratory research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.8field-weighted citation impact, top 27% of its field
1 · What the graph read from 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.

2 · The registry

The trial behind it

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 4 citations in OpenAlex.

  1. Symptom factors and their clinical correlates among adults with cystic fibrosis.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2025
    Article
  2. Symptoms and quality of life in adults with cystic fibrosis: A cross-sectional analysis of the InSPIRe:CF trial.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2024
    Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

19 authors at 6 institutions in 2 countries.

Jane LowersFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA.ORCID 0000-0003-2364-512X
Elisabeth P DellonPediatrics, The University of North Carolina, School of Medicine, Chapel Hill, North Carolina, USA.
Anne StephensonMedicine, St Michael's Hospital, Toronto, Ontario, Canada.
Robert ArnoldGeneral Internal Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Andrew AlthouseGeneral Internal Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Kwonho JeongGeneral Internal Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Ethan DubinFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA.
Jesse SoodalterFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA.
Cade HovaterFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA.
Marie BakitasSchool of Nursing, The University of Alabama, Birmingham, Alabama, USA.
Jessica GogginMedicine, University of California, La Jolla, California, USA.
William HuntMedicine, Emory University, Atlanta, GA, USA.
Sigrid LadoresSchool of Nursing, The University of Alabama, Birmingham, Alabama, USA.
Kimberly CurseenFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA.
Gretchen WinterMedicine, The University of Alabama, Birmingham, AL, USA.
George SolomonMedicine, The University of Alabama, Birmingham, AL, USA.
Jonathan AilonMedicine, St Michael's Hospital, Toronto, Ontario, Canada.
Douglas ConradMedicine, University of California, La Jolla, California, USA.
Dio KavalieratosFamily and Preventive Medicine, Emory University, Atlanta, Georgia, USA d.kavalieratos@emory.edu.ORCID 0000-0001-5283-0792
Emory University · USUniversity of Alabama at Birmingham · USUniversity of Pittsburgh · USSt. Michael's Hospital · CAUniversity of California San Diego · USUniversity of North Carolina at Chapel Hill · US

Funding

UAB CF Research and Translation Core CenterP30DK072482 · NIDDK · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI Brian R. Davis · 2007 to 2026
$23.0M
NIDDK NIH HHS P30 DK072482
6 · The paper itself

Abstract

introductionCystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. METHODS AND ANALYSIS: This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. ETHICS AND DISSEMINATION: Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: ISRCTN53323164.

Indexed as

Cystic FibrosisPalliative CareAdultCaregiversEquivalence Trials as TopicHumansMulticenter Studies as TopicQuality of LifeRandomized Controlled Trials as TopicCystic FibrosisPalliative Care

Identifiers

PMID36126995
PMCPMC9490626
OpenAlexW4296519694

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.