# National survey on pediatric respiratory physiotherapy units: primary ciliary dyskinesia and non-CF bronchiectasis

## TL;DR

This study surveyed Italian pediatric physiotherapy units to understand how they treat rare lung diseases like PCD and NCFB, finding significant variation in care.

## Contribution

The first national survey describing the structure and variability of pediatric respiratory physiotherapy units in Italy for rare lung diseases.

## Key findings

- Physiotherapy units are unevenly distributed across northern, central, and southern Italy.
- Respiratory therapists perform a wide range of interventions beyond airway clearance, including pulmonary function tests and non-invasive ventilation.
- There is a need for more standardized and specialized approaches to care for patients with PCD and NCFB.

## Abstract

Currently, there is a lack of data concerning the organization and characteristics of Italian pediatric physiotherapy units for the treatment of patients with chronic lung diseases, especially those with rare conditions such as Primary Ciliary Dyskinesia (PCD) and non-Cystic Fibrosis bronchiectasis (NCFB).

A national descriptive study based on a survey questionnaire was conducted. The questionnaire consisted of three different sections: distribution and characteristics of the centres, services provided by respiratory therapists, physiotherapists’ perception of the unit. The survey was distributed to all healthcare providers via an online platform, and a descriptive data analysis was performed.

The survey had a response rate of 97.5% with twenty-nine responses collected. The centers are heterogeneously distributed: thirteen in the northern regions, eight in the central regions and eight in the southern regions. Of the 29 centers with a physiotherapy unit, 19 had a specialized respiratory therapy unit. Respiratory therapy was provided in different care settings: regular wards (28/29 centers, 97%), outpatient service (29/29 centers, 100%), and intensive or semi-intensive care units (17/29 centers, 59%). The interventions provided by respiratory therapists involved more than just airway clearance (29/29). More specific interventions, such as pulmonary function tests (23/29), functional tests (27/29), educational training (26/29), management of workout exercise programs (25/29) and interventions developed in collaboration with physicians such as non-invasive ventilation (NIV) (23/29) and oxygen titration (21/29) are performed. It is interesting to note that therapists are also involved in various activities, such as telemedicine, physiotherapists’ research projects, and supporting alongside physicians, for the prescription at home of medical devices. Perception of the unit was also evaluated.

The involved centers are heterogeneous in terms of distribution and treatments offered. The role of respiratory physiotherapists still seems to be fragmented. This first descriptive analysis of the physiotherapy units and the main differences between centers opens queries on the clinical approaches used for pediatric patients with PCD in terms of respiratory physiotherapy. However,in response to evolving treatment needs, a more specialized and standardized approach to patient care is required.