This was a qualitative study including adult (>18 years) patients diagnosed with SA. To obtain detailed accounts of the patients’ point of view of their journey with SA and to capture and understand their beliefs and attitudes towards their disease, we used ethnographic interviews. This technique consists in a face-to-face, contextualized, and in-depth interview conducted at the participants’ homes. In addition to the data obtained from conversation, this technique enables the researcher to obtain data from non-verbal language and observation of patients’ homes, allowing researchers to extract information from the subjective experiences of patients. Ethnographic methods understand reality from a phenomenological perspective, which focusses on comprehending the individual's life experiences or individual's subjectivity to acquire relevant knowledge.

Purposive sampling was used to recruit a representative sample of patients with SA from three cities from Spain: Barcelona, Sevilla and Madrid. Participants were initially screened by a short telephone interview to confirm their eligibility, and selected participants were scheduled for an ethnographic interview. A sample of 10 patients, balanced by gender, main asthma specialist (allergist or pulmonologist), treatment (biological or conventional), age segment (18–44, 45–64, and >65 years), and time since diagnosis (<1 year to >5 years) was deemed sufficient for data saturation and variability. Participants and those with relatives employed in an advertising agency, a market research company, or any newspaper, magazine, radio or TV; or that worked in a pharmaceutical or health-related company as clinicians, researchers, consultants or had any other role were excluded from the study.

All study participants participated voluntarily in the study and signed an informed consent and confidentiality agreement. The study was conducted in accordance with the Local Personal Data Protection Law (LOPD 15/1999) and the codes of conduct of the European Pharmaceutical Market Research Association (EphMRA).

Data was collected by a male consultant anthropologist with extensive expertise in performing ethnographic health studies. The ethnographer did not have any previous relationship with the patients and conducted a 2-h semi-structured interview at the participant's home. All the interviews were documented by the ethnographer using observation notes, audio and video recording, and photographs. The interview was divided into four blocks, including (1) patient and context (i.e., personal, familiar, and social); (2) perception of SA, its symptoms, and impact; (3) disease history and evolution, including first symptoms and diagnosis, management and expectations for the future; and (4) communication and relationship with the asthma specialist, expectations and needs. Block 1 aimed to understand the subjectivity of the patient and pave the way to establish a rapport for the rest of the interview, and block 2 aimed to obtain data regarding patients’ perspectives, beliefs and experiences related with severe asthma. During blocks 3 and 4 of the interview, participants were asked to complete two exercises. The first exercise, “Timeline”, consisted in identifying the different feelings experienced during disease evolution using a timeline ranging from before SA until the present and a panel of nouns describing feelings. The second exercise, “Role Playing”, consisted in adopting the role of an asthma specialist attending a SA patient to explore how patients would like to be cared for and to understand the most painful points of their experience. The rationale of these two exercises was to gain access to the patients’ feeling and wishes, which are more easily accessible through game-like exercises than direct questions. After the interview, the patient took the interviewer on a guided home tour, describing the different spaces and rooms, their uses, and the patient's opinion about them. During the home tour, the interviewer took photographs of the different spaces and asked questions related to the topics raised during the interview and later compared this information with that obtained during the interview. Additionally, throughout the interview, the ethnographer made note of the space, organization, and objects in the patient's home, the patient's appearance (outfit, accessories, self-care, posture), non-verbal communication, lack of correspondence between verbal answers and body language, use of electronic devices, and interaction with other persons present in the house.

Interviews were transcribed to provide a detailed record, which was complemented with the observation notes, photographs, and audio and video recordings. To eliminate any potential bias due to the potential subjective interpretation of the researcher, data were processed by three researchers. The different kinds of data obtained (i.e., verbal language, non-verbal language, and home observation) were triangulated to obtain a deep and comprehensive understanding of the phenomena.19,20 Data was interpreted using the sense-making methodology, an inductive analysis to identify patterns in the main topics to be studied from repeated and consistent evidence. The topics investigated in this study were life experiences (i.e., from occurrence of the first symptoms until diagnosis and prescription of first treatment), attitudes towards the disease and healthcare professionals, needs regarding disease knowledge and perception, and patients’ relationship and communication with doctors and healthcare providers, to ultimately confer a meaning to each of the experiences.21 Researchers iteratively re-examined data in order to validate and/or refine these themes and patterns. This iterative analysis helped to establish connections between different patients’ accounts, unveil robust patterns in their journey with SA, and assure the accuracy of the findings.

The study sample consisted of 10 patients, whose demographic, clinical and treatment characteristics are summarized in Table 1. Participating patients, of which six were female, were distributed in similar proportions among the three age and time-since-diagnosis segments.

The life experiences of patients with SA evolved throughout their journey. Three different phases were identified within initial life experiences (i.e., from occurrence of first symptoms until diagnosis and prescription of first treatment) (Table 2). In phase 1, patients noticed the occurrence of first symptoms but considered them anecdotal (i.e., due to stress and difficulty to sleep at night), normalizing their symptoms as a response to their fear of having a disease. In phase 2, symptoms progressively worsened, in most cases leading to the first crisis and subsequent diagnosis of asthma. In spite of the soothing effect of this finding, viewed as a mild condition, patients were traumatized and lived in fear of another asthma exacerbation, while remaining unaware of the impact that asthma could have in all aspects of their lives. After receiving the first successful treatment (Phase 3), patients progressively became unconcerned about follow-up visits and medical indications due to the reassuring effect of prescribed rescue medications and the perceived lack of severity of their asthma.

Underestimation of the disease was persistently identified in the life experiences reported throughout the three initial phases of the SA patient journey. Similarly, a previous quantitative study had shown that, once diagnosed, 20% of patients underestimated their asthma severity.22 In fact, most participants in this study acknowledged that, before diagnosis, they underestimated asthma and tended to identify it as a medical condition associated with the elderly and stigmatized patients diagnosed with asthma since childhood. Hence, their view of asthma before and after diagnosis agrees with that of the general population, who tends to lack awareness of asthma as a differentiated disease.2 Based on these observations, various authors have stressed the need to increase awareness of asthma as a potentially severe condition among the general population as well.2,7,8,10 In this regard, the perception of asthma as a non-severe condition and, accordingly, not needing proper care, has been previously identified as one of the main barriers to treatment adherence.17,23 Hence, it is possible that the underestimation of asthma during the first phases of the disease has detrimental consequences to health-related outcomes (i.e., risk of exacerbations) in SA patients.

Attitudes of patients with SA have also evolved throughout three profiles—“ignorant”, “dedicated”, and “expert”—as patients accrued more life experiences and disease knowledge (Table 3). During the initial phases of the disease, most patients fell into the “ignorant” profile, which is characterized by passivity towards their asthma. In addition to being alienated from the disease, these patients were confused by the presence of asthma in their lives and attributed any possible cure or improvement exclusively to their doctor and the prescribed medication; yet their adherence to treatment was incomplete. After some time, patients in the “ignorant” profile evolved into the “dedicated” profile, marked by disease awareness. These patients acknowledged their asthma and were aware that obtaining disease-related knowledge was important to gain control and achieve a cure. Patients with the longest time since diagnosis fell into the “expert” profile, characterized by adaptation to chronicity, and used positive strategies to cope with the disease by reorganizing their lifestyles to be able to lead a “normal” life with asthma.

The life experiences of patients with SA and their association with different attitudinal profiles (i.e., confusion, denial of their chronic condition, and non-recognition of asthma as a disease) have been reported in previous qualitative studies.10,24 However, our analysis went one step further and suggested an evolving pattern throughout well-defined attitudinal profiles. Moreover, the analysis of these profiles revealed their association with patients’ ability to manage their disease and control their symptoms: starting with limited self-management ability (i.e., ignorant profile), through constant search for disease information and self-management (i.e., dedicated profile), to adapting their lifestyle to be able to live with asthma (i.e., expert profile). Altogether, the results from the attitudinal profiles of patients with SA showed that awareness of disease severity increased as patients accepted and internalized the chronicity of asthma years after diagnosis. This association of severity and chronicity might explain the prominent underestimation of asthma identified in patients during the first phases of their journey. Similar to these findings from the expert profile, previous studies concluded that acquiring knowledge, making informed decisions, and accepting the disease are essential to learn to live with a long-term condition.25

Patients with SA conveyed several unmet needs, classified in the five main topics summarized in Table 4, mostly related to their level of knowledge about the disease. They complained about the limited information received after diagnosis, and how this fact restricted their ability to interiorize the chronicity of asthma, confidently self-manage their disease, and trust doctors’ decisions regarding treatment. On the other hand, patients felt that the general public and healthcare professionals, in particular those attending to them in the emergency room, considered the disease unimportant and felt that asthma received less attention compared to other chronic conditions.

Previous studies conducted in different countries have typically identified a demand for non-technical disease information among asthma patients, suggesting the need for educational interventions, which should also be addressed to the general public to raise awareness.2,24 Similarly, participants in this study wished they had received comprehensive disease-related information from the beginning. This finding, together with the underestimation of the disease and attitudinal profiles identified in this study, raise the possibility that insufficient asthma-related education after diagnosis influenced disease perception and delayed their interiorization of asthma as a chronic disease.

Four main topics, summarized in Table 5, describe the relationship between patients and healthcare providers. Participants considered their primary doctor to be insufficiently prepared to treat SA and remarkably, perceived that general practitioners tended to underestimate their health status, delaying referral to a specialist. While allergists, and specially pulmonologists, were considered to have the best expertise in SA, their relationship and communication were hampered by the use of technical language, their frequent rotation, and the short time scheduled for visits.

Previous studies have reported a suboptimal relationship and communication between SA patients and the general practitioner and/or specialist, and have acknowledged the patients’ unmet need to receive clear, understandable information. These deficiencies may impact patients’ health literacy and subsequent health-related behaviours.13,18,26 In this regard, the proposed discussion and preparation of personalized asthma plans, together with life plan counselling, may constitute useful strategies to improve the doctor-patient communication.7,27