Evidence map›Paper›PMID 38746857›Full record

ArticleERJ open research2024

Standards of care and educational gaps in adult cystic fibrosis units: a European Respiratory Society survey.

Almudena Felipe Montiel, Antonio Álvarez Fernández, Mario Culebras Amigo, Francesco Blasi, Andrea Gramegna, Stuart Elborn, Alexander Horsley, Susan Madge, Daiana Stolz, Nathalie Tabin and 2 more

Abstract read
In one paragraph

Article in ERJ open research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Review
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

12 authors.

Almudena Felipe MontielDepartment of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.ORCID https://orcid.org/0000-0003-2314-0818
Antonio Álvarez FernándezDepartment of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.
Mario Culebras AmigoDepartment of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.
Francesco BlasiFondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Internal Medicine Department, Respiratory Unit and Cystic Fibrosis Adult Center, Milan, Italy.
Andrea GramegnaFondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Internal Medicine Department, Respiratory Unit and Cystic Fibrosis Adult Center, Milan, Italy.ORCID https://orcid.org/0000-0003-2315-5737
Stuart ElbornMedicine and Faculty of Medicine, Health and Life Sciences at Queen's University and Imperial College London, London, UK.
Alexander HorsleyDivision of Infection, Immunity and Respiratory Medicine and Adult CF Centre, Faculty of Biology Medicine and Health, University of Manchester, Manchester, UK.ORCID https://orcid.org/0000-0003-1828-0058
Susan MadgeRoyal Brompton and Harefield NHS Foundation Trust, London, UK.
Daiana StolzClinic of Respiratory Medicine and Pulmonary Cell Research, University Hospital Basel, Basel, Switzerland.
Nathalie TabinEducation Department, European Respiratory Society, Lausanne, Switzerland.
Carine PannetierEuropean Respiratory Society, Lausanne, Switzerland.
Eva PolverinoDepartment of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Significant progress in the field of cystic fibrosis (CF) has substantially extended the life expectancy of patients with CF (pwCF). Consequently, the population of adult pwCF has outnumbered paediatric patients in most developed countries. Ageing is a new factor that can contribute to disease complexity and can require adaptation of CF units. Therefore, the necessity for standardised, specialised and multidisciplinary care is imperative. Concerns arise regarding the adequacy of current healthcare, therapeutic and educational offerings. Methods: To address these concerns, a multinational survey was conducted to assess the current state of care in specialised multidisciplinary adult and paediatric CF units and identify areas for improvement. Responses were collected from 44 centres providing regular care to CF patients. Results: The survey unveiled considerable disparities in the availability of critical resources, including diagnostic access, supplementary testing, treatment modalities, transplant and transition programmes, and healthcare professionals' training. Conclusion: This study underscores the urgent need to standardise care across these centres in order to minimise disparities in terms of available resources and training with a particular emphasis on adult pwCF who are becoming more numerous and showing different needs with ageing. The changing landscape of CF in adulthood will require constant monitoring to ensure proper adaptation of the current model of care.

Identifiers

PMID38746857
PMCPMC11089383

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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.