DOI: 10.5281/zenodo.14288306
title: Cystic fibrosis patients' preferences for new electronic devices that monitor their inhalation

description: Background

Patients with cystic fibrosis (CF) use inhaled medicines daily due to respiratory manifestations. However, only 31% of users is inhaling correctly. Digital solutions targeting inhalation could help CF patients improve their technique and thus health outcomes. However, the use of electronic monitoring devices shows a decrease over time. Therefore, the aim of study was to investigate CF patients’ preferences for the use of electronic devices on their inhalation technique on a regular basis and reasons behind these preferences.

Methods

Semistructured interviews were conducted with 11 CF patients from four European countries to understand their disease history and experiences, daily use of inhaler medication, experiences with digital devices to achieve disease control, and expectations of new devices for monitoring inhalation.

CF participants were recruited via a convenient and purposive sampling. People were eligible if they were older than 18, English or Dutch speaking, and currently or recently using inhaled medication. Patients recruited through social media were anticipated to have more experiences with health apps that they could unfold in the interviews. Therefore, voluntary response sampling was conducted through Facebook using connections to online CF communities, by emailing national CF foundations and sending personal messages to CF patients on Instagram, identified through CF-related hashtags.

Of the approached national CF foundations, only the Dutch Cystic Fibrosis Foundation replied. In total, 64 CF patients were approached on Instagram, of which 51 patients did not respond. In addition, six patients showed willing to participate but did not meet the inclusion criteria, responded too late or did not use inhaler medicines near the time of study.

The interviews were conducted in English or Dutch. All interviews started with small-talk to create trust. Then, the interviews started with questions about the course of the disease to provide more insight into the individual context. The main themes of the interview guide were covered in all interviews, but as recommended for semistructured interviews, the depth of the different themes and order depended on the interviewee. Probing was used to fully capture patients’ experiences and perceptions. The interviews were conducted online via telephone or Microsoft Teams.

Interview guide:






Main theme



Subthemes





Burden of cystic fibrosis



-          Course of illness

-          Impact on daily life





Current treatment



-          Overview of total treatment

-          Adherence

-          Positive vs. negative aspects

-          Inhaled medication in detail: favourite device, opinion about technique, cleaning procedure, suggestions for improvement





Unmet needs



-          Symptoms/aspects that are not covered in general





Experience with digital tools related to CF



-          Barriers to adoption

-          Ease of use

-          User-friendliness

-          Beneficial outcomes

-          Satisfaction with offered features





Aspects considered added value for EMDs on inhalation technique



-          Barriers to adoption

-          Ease of use

-          User-friendliness

-          Why to use vs. why not to use

-          Features of interest

-          Purpose of use