Evidence map›Paper›PMID 39051187›Full record

ArticleAdvances in respiratory medicine2024

Validation of Polish-Language Questionnaires for Assessing the Quality of Life of Patients with Primary Ciliary Dyskinesia (PCD-QOL).

Magdalena Anita Roszak, Anna Bręborowicz, Aleksandra Szczepankiewicz, Marcin Mikoś, Zuzanna Bukowy-Bieryłło, Barbara Więckowska, Laura Behan, Hanna Dmeńska, Joanna Goździk-Spychalska, Agata Nowicka and 5 more

Abstract readValidation Study
In one paragraph

Article in Advances in respiratory medicine, 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. 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

15 authors.

Magdalena Anita RoszakDepartment of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-567 Poznan, Poland.ORCID 0000-0001-6752-9767
Anna BręborowiczDepartment of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-567 Poznan, Poland.
Aleksandra SzczepankiewiczLaboratory of Molecular and Cell Biology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-576 Poznan, Poland.ORCID 0000-0003-3379-9106
Marcin MikośDepartment of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-567 Poznan, Poland.ORCID 0000-0003-2792-3764
Zuzanna Bukowy-BieryłłoDepartment of Molecular and Clinical Genetics, Institute of Human Genetics, Polish Academy of Sciences, ul. Strzeszynska 32, 60-479 Poznan, Poland.ORCID 0000-0002-6945-1059
Barbara WięckowskaDepartment of Computer Sciences and Statistics, Poznan University of Medical Sciences, ul. Rokietnicka 7, 60-806 Poznan, Poland.ORCID 0000-0002-1811-2583
Laura BehanPrimary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Tremona Rd, Southampton SO16 6YD, UK.ORCID 0000-0002-0748-6141
Hanna DmeńskaClinic of Pulmonary Diseases, The Children's Memorial Health Institute, Aleja Dzieci Polskich 20, 04-730 Warsaw, Poland.ORCID 0000-0002-6450-0835
Joanna Goździk-SpychalskaDepartment of Pulmonology, Allergology and Respiratory Oncology, Poznan University of Medical Sciences, ul. Szamarzewskiego 84, 60-569 Poznan, Poland.
Agata NowickaDepartment of Pulmonology, Allergology and Respiratory Oncology, Poznan University of Medical Sciences, ul. Szamarzewskiego 84, 60-569 Poznan, Poland.
Ewa SapiejkaDepartment of Pediatrics and Cystic Fibrosis, Polanki Children's Hospital, ul. Polanki 119, 80-308 Gdansk, Poland.
Paulina FamulskaDepartment of Pediatrics and Cystic Fibrosis, Polanki Children's Hospital, ul. Polanki 119, 80-308 Gdansk, Poland.
Elżbieta GąseckaDepartment of Pediatrics, Allergology and Immunology, Polanki Children's Hospital, ul. Polanki 119, 80-308 Gdansk, Poland.
Andrzej PogorzelskiDepartment of Pneumology and Cystic Fibrosis, Institute of Tuberculosis and Lung Diseases, ul. Rudnika 3B, 34-700 Rabka-Zdrój, Poland.
Irena Wojsyk-BanaszakDepartment of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27/33, 60-567 Poznan, Poland.ORCID 0000-0001-6724-1499

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

In recent years, questionnaires were published in English to assess the quality of life of patients with PCD (Primary Ciliary Diskinesia) for adults, adolescents aged 13-17 years, and children aged 6-12 years and their caregivers. This study aimed to prepare Polish versions of the questionnaires and validate them in specific age groups with the participation of Polish patients with PCD. The individual questionnaires were translated and discussed with the involvement of the creator of the original questionnaire in English. Patients completed the questionnaires according to their affiliation with one of the groups. Validation was based on internal consistency analysis (Cronbach's alpha coefficient and split-half reliability) and test-retest reliability (intraclass correlation coefficient-ICC). The internal consistency of all questionnaires was from moderate to very good (Cronbach's alpha 0.67-0.91, split-half reliability 0.53-0.95). The consistency of the measurements showed excellent repeatability (ICC 0.67-0.91). The surveyed Polish PCD patients rated their quality of life quite well (63-77%). QOL questionnaires for patients with PCD can be used routinely during each medical check-up as a simple tool to provide the doctor with an indication of the effectiveness of treatment and the impact of the disease on the patient's quality of life.

Indexed as

Quality of LifeAdolescentAdultChildCiliary Motility DisordersFemaleHumansMalePolandReproducibility of ResultsSurveys and Questionnairesprimary ciliary dyskinesiaquality of life questionnaires

Identifiers

PMID39051187
PMCPMC11270409

What OpenQuestion holds

Textmetadata
LicenceCC BY
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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.