**3. Conclusions**

continue with the technology advances. The clinimetric properties of these devices in CF are described in a recent systematic review [154]. The authors found that only one accelerometer (ActiGraph model 7164) and one multisensor device (BodyMedia SenseWear armband) were tested. The ActiGraph presented good convergent validity [157, 159], test–retest reliability (intraclass correlation coefficient of 0.63) and feasibility [146, 157] in adolescent and adult patients with CF. Discriminate validity [160] and responsiveness [123] were only evaluated in children with CF. Selvadurai et al (2002), exploring the effects of exercise training in children with CF admitted to hospital (n=66), found a significant improvement in activity levels after five sessions of endurance training (8.64%, p<0.001, Cohen's dz 0.82) or resistance training (3.81%, p<0.001, Cohen's dz 0.85) measured by accelerometry [123]. Therefore, accelerometers may be a useful tool to assess changes in physical activity levels of patients with CF in response of respiratory physiotherapy interventions. Regarding the SenseWear armband device, its validity (discriminate, convergent and concurrent) [140, 161] was only determined for adult patients with CF and no data on reliability and responsiveness exist. Further research is needed to determine which motion sensors provide the best clinimetric properties in CF in order to improve physiotherapy assessment. Moreover, as children have typically higher physical activity levels than adults [162], validation studies should be conducted in children and adults with CF. Finally, it would be useful to develop specific guidelines for the use (e.g., number of monitoring days, duration) of these motion sensors in CF, in order to standardise the collection

The concept of burden of treatment has been receiving increasing attention in patients with CF. Burden of treatment is described as the increased demand experienced from performing self-care activities required to undertake treatment regimens and monitor health outcomes [163]. Recent evidence demonstrated, however, that from a patient's perspective, treatment burden is beyond the workload arising from treatment regimens, being experienced in three disruption domains: biological (physical side effects), biographical (sense of self) and relational

A large observational cohort study explored treatment complexity in patients with CF (n=7252) over a 3-year period [165]. It may be hypothesised that treatment regimens would be more complex only among patients with more severe disease. Indeed, in this cohort, the highest treatment complexity was presented by patients with more severe disease. Nevertheless, over the 3-year period, the complexity of treatment regimens increased in all age and disease severity groups. This study showed that the recommended management of CF resulted in high

In the specific case of respiratory physiotherapy, vigorous airway clearance and exercise regimens are recommended for patients with CF [166], which may result in increased burden of treatment. Burden of treatment, in turn, is associated with non-adherence and poor health outcomes [158, 163, 167–169]. This is particularly important for physiotherapists since the level of adherence to exercise and physiotherapy is generally reported to be poor (40–55%) [170, 171], in contrast with moderate to high adherence to nebulised medications, pancreatic

of activity data and optimise their interpretation.

(impact on valued relationships) [164].

burden of treatment for patients.

enzymes and antibiotics (65–95%) [170, 172].

*2.2.7. Burden of treatment*

56 Cystic Fibrosis in the Light of New Research

This chapter presented and discussed the strength and weaknesses of the outcome measures currently applied or emerging in CF respiratory physiotherapy interventions. It provided a comprehensive overview of the most commonly used, and also addressed the less used and some even emerging, outcome measures, which show potential to overcome some of the barriers to build an evidence base for respiratory physiotherapy practice in patients with CF.

The chapter presented outcome measures possibly to be applied (i) in clinical practice before, during and after each session of respiratory physiotherapy to monitor its effectiveness; (ii) before and after the respiratory physiotherapy treatment (i.e., normally characterised by weeks of intervention) and (iii) clinically, but which main interest is fundamental and/or applied research in CF respiratory physiotherapy.

In a time where the relationship between "best care" versus "burden of treatment" is discussed, two factors seem crucial for respiratory physiotherapy: (1) to take into consideration family and patient's preferences when providing treatments and (2) build a sound evidence base. For the latter, a shift of the commonly used outcome measures, namely FEV1, is essential, and a strong consideration to start applying new outcome measures is recommended.
