Background

Low rates of adherence or non-adherence to nebuliser treatment in CF are linked to poor clinical outcomes. With advances in technology there has been an increase in electronic monitoring of nebuliser usage in CF clinical practice. There is little understanding of how objective data, when used as evidence of adherence, is perceived by PWCF and health-care professionals, and whether or not it can facilitate discussions surrounding the reasons for adherent or non-adherent behaviours.

Methods

A qualitative study as part of a RCT evaluating the effectiveness of a new intervention to promote adherence. The intervention comprised feedback of real-time, objective adherence data to PWCF and an interventionist – usually a health-care professional from the CF MDT – offering a BCI. During intervention sessions between interventionists and PWCF the objective adherence data were discussed and targets for improvement agreed on and set. A total of 22 PWCF and 26 interventionists took part in individual semistructured interviews; a framework approach was used for analysis.

Results

Objective adherence data were welcomed by both interventionists and PWCF in the intervention arm of the RCT. PWCF were able to choose how to display their data, for example different types of graphs (bar/line) and daily, weekly or specific times. Interventionists suggested that these easy-to-read graphs provided a focus for discussions with PWCF about their adherence patterns. Details about how the data were displayed were significant. In particular, using a traffic light system of red, amber and green enabled PWCF to see at a glance if they were meeting targets set by themselves and the interventionist. ‘Gamification’ of the data, encouraging PWCF to achieve green graphs signifying meeting targets, was key to engaging PWCF, acting as a motivator to meet targets. Technological issues did not appear to affect PWCFs’ trust in the data.

The objective data were used as ‘proof to self’, offering reassurance to high-level adherers who believed they were adhering to their nebuliser treatments but nevertheless appreciated external proof of this belief. By contrast, some PWCF with lower adherence levels could be shocked by the proof of the number of treatments they had missed in previous weeks and months. PWCF from all adherence groups used the data to keep track of their progress, and seeing patterns of adherence helped them to consolidate their routines to improve adherence. The data as ‘proof to self’ provided both motivation to improve for lower-level adherers and motivation to maintain high levels for higher-level adherers. The data were used as a platform to initiate sometimes difficult discussions about adherence, and were perceived as promoting honesty between PWCF and clinicians. When patients could see improvements, this increased their motivation to continue to meet targets set.

The objective data could also act as ‘proof to others’. The ability to prove what they were doing to others was very important to PWCF, regardless of adherence grouping, because they often perceived that their clinical team – and in some cases their close family members – did not believe their subjective reports of adherence. Some PWCF in the sample had objective adherence rates that matched their subjective adherence rates and were considerably higher than their clinical team or family members believed. In these cases the proof offered by the objective data could radically change the PWCF’s identity as a low-level adherer, improving relationships with clinicians and family. It could even affect future clinical care when clinicians understood that the health problems experienced by the PWCF could not be due to lack of adherence to nebuliser medication, and that alternative reasons needed to be investigated.

Most interventionists and PWCF viewed the objective data, and the proof it offered, positively. However, interventionists pointed out that it needed to be used carefully, particularly with those PWCF not achieving high levels of adherence. They stressed that it was important that this proof was used to instigate a discussion, not as a reason to castigate PWCF. At times there was disparity between the objective data, and PWCF’s perceptions of their adherence, which had to be addressed with sensitivity.

Conclusion

In this study of PWCF who chose to participate in a RCT of an intervention to improve adherence, objective nebuliser adherence data appeared to facilitate honest discussions around reasons for non-adherence, and helped with identification of strategies to resolve barriers to adherence. In addition, the data offered proof to both PWCF and their clinical team that both motivated and rewarded improvements in adherence.