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

TL;DR

The study validates Polish-language questionnaires for assessing the quality of life of primary ciliary dyskinesia patients, finding they work well and can be used in routine check-ups.

Contribution

The Polish version of the PCD-specific quality of life questionnaire is validated for use in clinical practice across all age groups.

Findings

Polish PCD patients report lower quality of life compared to English-speaking patients.

The Polish questionnaires showed good internal consistency and test–retest reliability.

The validated questionnaires can be used routinely during medical check-ups to assess treatment effectiveness.

Abstract

What are the main findings?
The quality of life of primary ciliary dyskinesia patients is assessed differently depending on the patient’s country of origin.QOL-PCD questionnaires can be used during routine follow-up visits.

The quality of life of primary ciliary dyskinesia patients is assessed differently depending on the patient’s country of origin.

QOL-PCD questionnaires can be used during routine follow-up visits.

What are the implications of the main findings?
The Polish version of the quality of life questionnaire is a simple and feasible tool to assess PCD patients of all ages.Polish PCD patients rate their quality of life lower than English-speaking patients.

The Polish version of the quality of life questionnaire is a simple and feasible tool to assess PCD patients of all ages.

Polish PCD patients rate their quality of life lower than English-speaking patients.

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.

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