Evidence map›Paper›PMID 39898696›Full record

Trial reportPediatric pulmonology2025

Implementation of Cystic Fibrosis Responsibility, Independence, Self-Care, Education Program Enhances Cystic Fibrosis Knowledge in Limited Resource Country: Results From a Randomized Controlled Trial.

Merve Selcuk Balcı, Yasemin Gökdemir, Ela Erdem Eralp, Almala Pınar Ergenekon, Cansu Yılmaz Yegit, Mürüvvet Yanaz, Aynur Gulieva, Mine Kalyoncu, Seyda Karabulut, Neval Metin Cakar and 9 more

Abstract readRandomized Controlled Trial
In one paragraph

Trial report in Pediatric pulmonology, 2025. 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. Review
  2. The globalization of cystic fibrosis care.Current opinion in pediatrics · 2025
    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

19 authors.

Merve Selcuk BalcıSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0002-2146-3966
Yasemin GökdemirSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Ela Erdem EralpSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Almala Pınar ErgenekonSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0003-0228-9832
Cansu Yılmaz YegitSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0001-8239-4776
Mürüvvet YanazSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0002-1591-5735
Aynur GulievaSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Mine KalyoncuSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0002-4594-2822
Seyda KarabulutSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Neval Metin CakarSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Burcu UzunogluSelim Cöremen Cystic Fibrosis Center, Pendik Education and Training Hospital, Marmara University, Istanbul, Turkey.
Gamze TastanSelim Cöremen Cystic Fibrosis Center, Pendik Education and Training Hospital, Marmara University, Istanbul, Turkey.
Damla KocamanNutrition and Dietetics, Pendik Education and Training Hospital, Marmara University, Istanbul, Turkey.
Ozge Kenis CoskunDepartment of Physical Medicine and Rehabilitation, School of Medicine, Marmara University, Istanbul, Turkey.ORCID http://orcid.org/0000-0002-3004-1992
Ilknur GorgunKIFDER, Istanbul, Turkey.
Randall MessierInstitute for Excellence in Health and Social Systems (IEHSS), Durham, New Hampshire, USA.
Pamela MertzInstitute for Excellence in Health and Social Systems (IEHSS), Durham, New Hampshire, USA.
Fazilet KarakocSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.
Bülent KaradagSchool of Medicine, Division of Pediatric Pulmonology, Marmara University, Istanbul, Turkey.

Funding

The authors received no specific funding for this work.
6 · The paper itself

Abstract

backgroundCF R.I.S.E is a program that helps people with Cystic Fibrosis (pwCF) transition from pediatric to adult care. In 2022, we adapted it to CF S.O.B.E in Turkish during a training session. This project aims to present the results of the CF S.O.B.E program.

methodsThis study included 81 pwCF aged 16-25, divided into two groups: the standard CF S.O.B.E. group (n = 39) and the modified group (n = 42). The standard group received face-to-face education. Both groups participated in online training sessions and received written materials. The knowledge levels were evaluated with Knowledge Assessment Questionnaires (KAQ).

resultsThe standard group showed higher post-training scores in "Lung Health and Airway Clearance" and "Equipment Maintenance and Infection Control" (p = 0.014 and 0.002). Modified group showed improvements in all KAQs except "Lung Health and Airway Clearance", "CF-related Liver Disease," "Pancreatic Insufficiency and Nutrition," and "Male Sexual Health." Regarding Pancreatic Insufficiency & Nutrition and CF-related Diabetes, individuals with these conditions demonstrated higher pretest scores than those without these conditions (p = 0.01 and 0.002, respectively). Both groups and their parents reported high satisfaction, and healthcare providers endorsed the program's effectiveness.

conclusionOur study demonstrated the CF S.O.B.E program's success in enhancing knowledge, disease management skills, and self-confidence among pwCF. While the modified CF S.O.B.E program may be suitable for resource-limited centers, the priority should be to implement the standard program due to its superior outcomes in self-confidence and disease management. This study lays the foundation for incorporating CF S.O.B.E as a standard practice and evaluating its long-term clinical impact.

Indexed as

Cystic FibrosisHealth Knowledge, Attitudes, PracticePatient Education as TopicSelf CareTransition to Adult CareAdolescentAdultFemaleHumansMaleSurveys and QuestionnairesTurkeyYoung Adultcystic fibrosisknowledgequality improvementtransition

Identifiers

PMID39898696
PMCPMC11789547

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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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.