Respiratory symptoms of Swiss people with Primary Ciliary Dyskinesia

Goutaki, Myrofora; Hüsler, Leonie; Lam, Yin Ting; Collaud, Eugenie; Koppe, Helena; Pedersen, Eva Ringdal; Kuehni, Claudia

doi:10.1183/13993003.congress-2021.oa2956

Cited by 3 publications

(4 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our reporting conforms with the Strengthening the Reporting of Observational studies in Epidemiology (STROBE) statement [22]. Detailed information about the study design is published elsewhere [23]. CH-PCD received ethical approval from the Cantonal Ethics Committee of Bern in 2015 (KEK-BE: 060/2015).…”

Section: Study Design and Populationmentioning

confidence: 95%

“…The questionnaire was based on the FOLLOW-PCD questionnaire (version 1.0), a PCD-specific standardised questionnaire, and part of a follow-up form developed by an international PCD expert group [24]. The FOLLOW-PCD questionnaire's main domains included chronic respiratory symptoms from the past 3 months and health-related behaviours, such as physical activity during the past 12 months [23]. Our study used all original questions from the FOLLOW-PCD questionnaire and included additional questions about respiratory physiotherapy and nutritional intake.…”

Section: Questionnairementioning

confidence: 99%

“…We developed new questions in German, then a native French speaker with knowledge about primary ciliary dyskinesia translated them into French. Questionnaires were age-specific for adults (ages ≥18 years), adolescents (ages 14-17 years), and parents of children (ages 0-13 years) with primary ciliary dyskinesia, available in German and French [23].…”

Section: Questionnairementioning

confidence: 99%

“…We defined symptoms as frequent if they were reported daily or often. Reported frequency of all symptoms ranged from daily, often, sometimes, and rarely to never [23].…”

Section: Respiratory Symptomsmentioning

confidence: 99%

See 3 more Smart Citations

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland – a cross-sectional survey

et al. 2022

Self Cite

View full text Add to dashboard Cite

AIMS OF THE STUDY: We know little about the level of physical activity, respiratory physiotherapy practices and nutritional status of people with primary ciliary dyskinesia (PCD), although these are important aspects of patients with chronic respiratory disease. We assessed physical activity, respiratory physiotherapy practices and nutritional status among people with primary ciliary dyskinesia in Switzerland, investigated how these vary by age and identified factors associated with regular physical activity. METHODS: We sent a postal questionnaire survey to people with primary ciliary dyskinesia enrolled in the Swiss PCD registry (CH-PCD), based on the standardised FOLLOW-PCD patient questionnaire. We collected information about physical activity, physiotherapy, respiratory symptoms and nutritional status. We calculated the metabolic equivalent (MET) to better reflect the intensity of the reported physical activities. To assess nutritional status, we extracted information from CH-PCD and calculated participants’ body mass index (BMI). RESULTS: Of the 86 questionnaires we sent, 74 (86% response rate) were returned from 24 children and 50 adults. The median age at survey completion was 23 years (IQR [interquartile range] 15–51), and 51% were female. Among all 74 participants, 48 (65%) performed sports regularly. Children were vigorously active (median MET 9.1; IQR 7.9–9.6) and adults were moderately active (median MET 5.5; IQR 4.3—6.9). Fifty-nine participants (80%) reported performing some type of respiratory physiotherapy. However, only 30% of adults saw a professional physiotherapist, compared with 75% of children. Half of the participants had normal BMI; one child (4%) and two adults (4%) were underweight. People who were regularly physically active reported seeing a physiotherapist more often. CONCLUSIONS: Our study is the first to provide patient-reported data about physical activity, respiratory physiotherapy and nutrition among people with primary ciliary dyskinesia. Our results highlight that professional respiratory physiotherapy, exercise recommendations and nutritional advice are often not implemented in the care of people with primary ciliary dyskinesia in Switzerland. Multidisciplinary care in specialised centres by teams including physiotherapists and nutrition consultants could improve the quality of life of people with primary ciliary dyskinesia.

show abstract

Section: Study Design and Populationmentioning

confidence: 95%

Section: Questionnairementioning

confidence: 99%

Section: Questionnairementioning

confidence: 99%

“…We defined symptoms as frequent if they were reported daily or often. Reported frequency of all symptoms ranged from daily, often, sometimes, and rarely to never [23].…”

Section: Respiratory Symptomsmentioning

confidence: 99%

See 2 more Smart Citations

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland – a cross-sectional survey

et al. 2022

Self Cite

View full text Add to dashboard Cite

show abstract

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland

Lam

Pedersen

Schreck

et al. 2022

Preprint

Self Cite

View full text Add to dashboard Cite

SummaryAims of the studyWe know little about the level of physical activity, respiratory physiotherapy practices, and nutritional status of people with primary ciliary dyskinesia (PCD), although these are important aspects of patients with chronic respiratory disease. We assessed physical activity, respiratory physiotherapy practices, and nutritional status among people with PCD in Switzerland, investigated how these vary by age, and identified factors associated with regular physical activity.MethodsWe sent a postal questionnaire survey to people with PCD enrolled in the Swiss PCD registry (CH-PCD), based on the standardised FOLLOW-PCD patient questionnaire. We collected information about physical activity, physiotherapy, respiratory symptoms, and nutritional status. We calculated the metabolic equivalent (MET) to better reflect the intensity of the reported physical activities. To assess nutritional status, we extracted information from CH-PCD and calculated participants’ body mass index (BMI).ResultsOf the 86 questionnaires we sent, 74 (86% response rate) were returned from 24 children and 50 adults. The median age at survey completion was 23 years [IQR (interquartile range) 15–51], and 51% were female. Among all 74 participants, 48 (65%) performed sports regularly. Children were vigorously active (median MET 9.1; IQR 7.9–9.6) and adults were moderately active (median MET 5.5; IQR 4.3-6.9). 59 participants (80%) reported performing some type of respiratory physiotherapy. However, only 30% of adults saw a professional physiotherapist compared with 75% of children. Half of the participants had normal BMI; one child (4%) and two adults (4%) were underweight. People who were regularly physically active reported seeing a physiotherapist more often.ConclusionsOur study is the first to provide patient-reported data about physical activity, respiratory physiotherapy, and nutrition among people with PCD. Our results highlight that professional respiratory physiotherapy, exercise recommendations, and nutritional advice are often not implemented in the care of people with PCD in Switzerland. Multidisciplinary care in specialised centres by teams including physiotherapists and nutrition consultants could improve the quality of life of people with PCD.

show abstract

ERS International Congress 2021: highlights from the Paediatric Assembly

et al. 2022

Self Cite

View full text Add to dashboard Cite

show abstract

Respiratory symptoms of Swiss people with Primary Ciliary Dyskinesia

Abstract: Detailed information about patient-reported PCD symptoms will help characterise the phenotypic variability of the disease and could inform the development of individualised treatment strategies for patients https://bit.ly/363Zb4T

Cited by 3 publications

References 30 publications

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland – a cross-sectional survey

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland – a cross-sectional survey

Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland

ERS International Congress 2021: highlights from the Paediatric Assembly

Contact Info

Product

Resources

About