Experiences of individually tailored physical exercise in boys with Duchenne muscular dystrophy: a qualitative study.

INTRODUCTION: Excessive and insufficient physical exercise have both been associated with accelerated muscle function decline in boys with Duchenne Muscular Dystrophy (DMD), and optimal exercise remains unclear. OBJECTIVE: This study explored participants' experiences with a one-year training program. METHODS: Five semi-structured qualitative individual interviews and one focus group interview were conducted and analyzed using systematic text condensation. RESULTS: Participants included boys with DMD who participated in the intervention study (n = 10), their relatives and/or assistants (n = 7). Four main themes emerged: 1) the crucial role of motivation to maintain training routines, 2) benefiting from exercise, but with a need for balancing it, 3) time management challenges, and 4) the training as a social arena and meeting place. The participants emphasized the importance of experiencing progress, basic skills and enjoyable training. Parents were reassured knowing the appropriate exercise intensity and technique. The boys needed flexibility and support to find a balance between exercise and other activities and described benefits from sharing experiences with each other. CONCLUSION: Clinical guidelines for physical exercise in DMD should encompass customization of exercise interventions supporting motivational factors, balance and social interaction, and identify competing commitments. Successful training programs may enhance quality of life and functionality for these boys.

Norwegian Version of the Chelsea Critical Care Physical Assessment Tool (CPAx-NOR): Translation, Face Validity, Cross-Cultural Adaptation and Inter-Rater Reliability.

BACKGROUND: Assessment of physical and respiratory function in the intensive care unit (ICU) is useful for developing an individualized treatment plan and evaluating patient progress. There is a need for measurement tools that are culturally adapted, reliable and easy to use. The Chelsea Critical Care Physical Assessment Tool (CPAx) is a valid measurement tool with strong psychometric properties for the intensive care population. This study aims to translate, adapt and test face validity and inter-rater reliability of the Norwegian version of CPAx (CPAx-NOR) for use in critically ill adult patients receiving prolonged mechanical ventilation. METHOD: CPAx-NOR was forward backward translated, culturally adapted and tested by experts and patients for face validity. Thereafter tested by 10 physiotherapists in five hospitals for inter-rater reliability. RESULTS: The experts and pilot testers reached consensus on the translation and face validity. Patients were tested at time point A (n = 57) and at time point B (n = 53). The reliability of CPAx-NOR at "A" was 0.990 (0.983-0.994) and at "B" 0.994 (0.990-0.997). Based on A+B combined and adjusted, the ICC was 0.990 (95% CI 0.996-0.998). Standard error of measurement (SEM) was 0.68 and the minimal detectable change (MDC) was 1.89. The Bland-Altman plot showed low bias and no sign of heteroscedasticity. CPAx-NOR changed with a mean score of 14.9, and showed a moderate floor effect at the start of physiotherapy and low ceiling effects at discharge. CONCLUSION: CPAx-NOR demonstrated good face validity and excellent inter-rater reliability. It can be used as an assessment tool for physical function in critically ill adults receiving prolonged mechanical ventilation in Norway.

Prevalence and impact of exercise-induced laryngeal obstruction in asthma: a study protocol for a cross-sectional and longitudinal study.

INTRODUCTION: Exercise-induced laryngeal obstruction (EILO) and exercise-induced asthma can cause troublesome respiratory symptoms that can be difficult to distinguish between. Further, there is now a growing appreciation that the two conditions may coexist, complicating the interpretation of symptoms. The primary aim of this study is to investigate the prevalence of EILO in patients with asthma. Secondary aims include evaluation of EILO treatment effects and investigation of comorbid conditions other than EILO in patients with asthma. METHODS AND ANALYSIS: The study will be conducted at Haukeland University Hospital and Voss Hospital in Western Norway, and enrol 80-120 patients with asthma and a control group of 40 patients without asthma. Recruitment started in November 2020, and data sampling will continue until March 2024. Laryngeal function will be assessed at baseline and at a 1-year follow-up, using continuous laryngoscopy during high-intensity exercise (CLE). Immediately after the EILO diagnosis is verified, patients will be treated with standardised breathing advice guided by visual biofeedback from the laryngoscope video screen. The primary outcome will be the prevalence of EILO in patients with asthma and control participants. Secondary outcomes include changes in CLE scores, asthma-related quality of life, asthma control and number of the asthma exacerbations, as assessed between baseline and the 1-year follow-up. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Regional Committee for Medical and Health Research Ethics, Western Norway, (ID number 97615). All participants will provide signed informed consent before enrolment. The results will be presented in international journals and conferences. TRIAL REGISTRATION NUMBER: NCT04593394.

Adjustments of non-invasive ventilation and mechanically assisted cough by combining ultrasound imaging of the larynx with transnasal fibre-optic laryngoscopy: a protocol for an experimental study.

INTRODUCTION: Application of non-invasive positive airway pressure may provoke laryngeal responses that obstruct the airways, especially in patients with disturbed laryngeal control. To control and adjust for this, transnasal fibre-optic laryngoscopy (TFL) is used to visualise laryngeal movements during therapeutic interventions. Being an invasive procedure, this may be unpleasant for patients. The aim of this study is to evaluate if ultrasound (US) imaging of the larynx may be used as an alternative less invasive diagnostic tool for evaluating the upper airway responses to non-invasive ventilation (NIV) and mechanical insufflation-exsufflation (MI-E). METHODS AND ANALYSIS: This protocol presents an experimental cross-sectional study of a novel method to study laryngeal responses in adult healthy volunteers (n=30). The participants will be assessed with simultaneous TFL and laryngeal US imaging (anterior and lateral approaches) during NIV and MI-E therapy. Additionally, airflow and pressure signals will be registered during the procedures. The primary outcome is whether laryngeal US is a feasible method to study laryngeal responses and, if so, to compare the laryngeal responses visualised with TFL and US. The participants' perception of the examinations will be recorded. Secondary outcomes include airflow curve shapes and calculated ventilation volumes during the interventions. ETHICS AND DISSEMINATION: The study has been approved by The Regional Committee for Medical Research Ethics in Norway, and registered in ClinicalTrials.gov. Results will be disseminated through peer-reviewed journals, presentation of scientific abstracts at international medical conventions and oral presentations in relevant medical conventions. TRIAL REGISTRATION NUMBER: NCT04586855.