Improving spirometry testing by understanding patient preferences

Respondent demographics

While the majority of the responses were from Europe, patients from 52 countries around the world completed the questionnaire (supplementary table S2). The most frequent countries of residence were Germany (16.5%), UK (16.1%), Belgium (11.9%), USA (10.9%), Spain (10.9%), Italy (10.1%) and the Netherlands (8.5%). Although the study was open to both children and adults, the majority of respondents were adults aged ≥18 years (97.0%) (supplementary table S3). 53.2% reported regularly using preventer, rescue or reliever inhalers.

The reason for initial referral for spirometry was diagnosis (35.0%) or an ongoing condition. Table 1 shows the reasons for attendance in detail; respondents could select more than one option.

The majority of respondents had their spirometry test in a hospital (66.7%) or primary care (13.4%) setting, with only 1.5% reporting home spirometry.

Experience of spirometry testing and understanding of FEV₁

Respondents were very experienced with spirometry testing; 89.9% had completed more than one spirometry test and 48% reported having had 10 or more spirometry tests. However, most reported not knowing what FEV₁ means (59.4%) and only 39.6% said they knew their most recent FEV₁. Patients with cystic fibrosis (CF) were more likely (73.5%) than other conditions (e.g. asthma 44.9% and chronic obstructive pulmonary disease (COPD) 43.9%) to understand FEV₁ and have knowledge of their current FEV₁ (75.2% compared with 34.8% for asthma and 44.9% for COPD). Patients with CF complete spirometry more regularly as part of their ongoing management compared with other lung conditions and children with CF need to be tested more frequently to take account of their growth. Age may also play a part, as respondents with CF were more likely to be younger, and older adults tend to have lower levels of “health literacy” or the ability to obtain, process and understand basic health information [3]. However, it did not apply to other conditions: for all respondents, 63.4% of those aged >50 years reported knowing what FEV₁ meant compared with 53.22% of those aged ≤50 years.

Patients want to be able to understand their results and what they mean for them. Many reported not understanding how their spirometry results relate to their specific condition. They would like to be able to have access to these results (either on paper or available digitally) and be able to compare them with their previous results. Patients would also like to understand how their results rate for someone with their lung condition (56.3%), and how they rate for a healthy person of their age and height (53%).

While the majority reported that the difficulty of performing spirometry was acceptable to them, a minority (17%) did find it difficult (13.6% responding “somewhat acceptable” and 3.4% responding “not at all acceptable”), and this was especially so for respondents with idiopathic pulmonary fibrosis (26.7%; 22.5% responding “somewhat acceptable” and 4.2% responding “not at all acceptable”). Some were concerned about the test (20.1% rated as a moderate or serious problem to them “Concern about whether the test would cause shortness of breath”; 17.5% rated as moderate or serious “Concern about whether I could do the test”) and in the qualitative data some expressed feeling anxiety about the results. Some felt vulnerable and found the process embarrassing (9.7% rated as a moderate or serious problem to them “Feeling embarrassed performing the test”), especially when they found the test hard to do or when they produced sputum or excess saliva, as reported in the free-text comments.

Most tests lasted between 5 and 15 min (51.5%), including the time for meeting, instructions and performing the test, although 32.1% lasted >15 min. 88.8% of respondents found the length of the test acceptable.

14.1% of participants reported not getting information about spirometry at the time of testing and 38.3% reported that they did not receive any information about withholding inhalers prior to the test.

Spirometry preferences

The majority of patients would prefer to receive information about spirometry verbally (59.4%), but many also wanted a printed handout (40.6%). A smaller but significant proportion preferred to receive information electronically (28.1%), especially those aged 18–50 years. Patients would like to know what to expect from the test and what the potential benefits of completing the test are. 65.2% would like to understand what it means if their result has changed from the last time they did spirometry.

Many had used only one type of mouthpiece (43.4%) or had no preference about the mouthpiece (18.4%). The majority had used a nose clip (85.3%), with 16.6% reporting nose clip comfort as a moderate or serious problem for them (10.6% and 6.0%, respectively). Many of the patients who reported anxiety in the free-text comment sections about their experience of spirometry cited the nose clip as problematic.

Benefits and barriers of spirometry

When asked about perceived benefits of spirometry, the most common rated benefits were improved knowledge of lung function (62.5%) and getting a diagnosis (42.4%).

Participants were asked to rate how problematic potential issues with spirometry were for them on a four-point Likert scale (not, minor, moderately and severely problematic) with a “not applicable” option. The issues that were rated most frequently as moderately or severely problematic are presented in table 2. Many of these issues are reflected in the qualitative narrative in the following section.

Overall view about spirometry and ideas for improvement

Respondents were asked to provide feedback about their views on spirometry and any suggestions for improvement. 1422 respondents completed this section of the survey with responses varying from a few words to very long responses. The answers in English were coded for themes and validated in other languages; the themes are described in the following subsections.