Evidence map›Paper›PMID 39742073›Full record

ArticleJournal of patient experience2024

Cystic Fibrosis Experience of Care Survey: Patient-Caregiver-Clinician Collaborative Design and Implementation.

Stacy Allen, Maxwell Vetter, David W Davison, Gemma Cochrane, Ahmet Uluer, Deidre Jennings, Fadi Asfour, Kathryn A Sabadosa, Julianna Bailey

Abstract read
In one paragraph

Article in Journal of patient experience, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
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

1 citing paper in PubMed.

  1. 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

9 authors.

Stacy AllenPrimary Children's CF Center, Salt Lake City, UT, USA.ORCID https://orcid.org/0009-0000-3674-5985
Maxwell VetterPrimary Children's CF Center, Salt Lake City, UT, USA.
David W DavisonUniversity of Nebraska Adult Cystic Fibrosis Program, Omaha, NE, USA.
Gemma CochraneYale University School of Medicine, New Haven, CT, USA.
Ahmet UluerBoston Children's Hospital, Brigham & Women's Hospital, Boston, MA, USA.
Deidre JenningsUniversity of Virginia, Charlottesville, VA, USA.
Fadi AsfourPrimary Children's CF Center, Salt Lake City, UT, USA.
Kathryn A SabadosaCystic Fibrosis Foundation, Bethesda, MD, USA.
Julianna BaileyUniversity of Alabama at Birmingham, Birmingham, AL, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

People with cystic fibrosis (PwCF), families, and clinicians, partner to co-produce care, navigate access barriers, address mental health and social factors, follow specific infection prevention and control practices, and share decision-making regarding treatments and daily care. Standard patient satisfaction and experience of care surveys are not tailored to return relevant, actionable data for specific populations. To improve the care experience, the U.S. CF Foundation committed to fielding a national survey in 2015. In 2020, the onset of the COVID-19 pandemic prompted revisions to capture virtual care experiences, a mode of care delivery not previously offered to PwCF. Leveraging this opportunity, the CF Foundation also reorganized how stakeholders are engaged in survey design, implementation, and improving the care experience. These changes resulted in a focused survey instrument as well as equitable and transparent data reports available to all stakeholders.

Indexed as

coproductioncystic fibrosisexperience-based co-designpatient-and-family centered carepatient engagementpatient experience surveyquality of care

Identifiers

PMID39742073
PMCPMC11686623

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.