How physiotherapists personalize airway clearance in children with primary ciliary dyskinesia

INTRODUCTION: Current literature recommends the personalization of airway clearance technique (ACT) regimens for people with chronic suppurative lung diseases, such as primary ciliary dyskinesia (PCD). However, how physiotherapists navigate cues including the individual's physical and psychosocial presentation, the properties of the ACT regimen and their response to the ACT regimen, remains unknown. OBJECTIVE: This study aimed to understand how physiotherapists make decisions in relation to personalizing airway clearance regimens for children and young people with PCD. METHODS: Critical decision method (CDM) interviews were used to explore expert physiotherapists' decision-making during an ACT personalization incident. Six physiotherapists with ≥5 years PCD experience, from four specialist centers were interviewed; one-to-one virtual interviews were conducted (duration 55-100 min). Data were analyzed using the CDM derived recognition-primed decision model and an ACT personalization model. RESULTS: Our interviews (<i>n</i> = 6) showed all physiotherapists initially found the situation to be familiar, but in most cases the initial expectancies of the physiotherapist were violated. Participants described uncertainty in personalization of ACT regimens. An iterative process was used to manage the uncertainty and make any modifications to ensure the regimen would likely work prior to implementation. This suggests a need for objective tools to support clinical decision-making. Physical characteristics (age, disease severity, pulmonary and non-pulmonary factors, medications), psychosocial factors (lifestyle, adherence, ability to engage) and treatment-related factors (regimen burden, patient's preference) were commonly considered during personalization. The ACT type, procedures and dosage were personalized for each individual. All physiotherapists undertook mental or physical simulations of their proposed actions and in most cases, this led to regimen modifications. CONCLUSION: ACT personalization is a complex, iterative process in which uncertainty can arise. With limited tools to assess the effects of ACT regimens, it remains unknown if uncertainty would be reduced, or personalization changed with the provision of more sensitive outcome data.