Background

The living with severe asthma

Asthma, a chronic lung disease characterized by airway inflammation, bronchial hyper-responsiveness, and airflow obstruction, affects almost 2.5 million people in Italy. Asthma can occur in intrinsic forms, with unknown pathogenesis, or in extrinsic forms, caused by an allergic response and that occurs in 77–79% of cases [1]. From literature, the most common substances inducing allergic asthma are inhaled allergens like animal dander (skin, saliva), dust mites, cockroach particles, mould and pollen [2]. According to the Global Initiative for Asthma (GINA) Guidelines [3], from 10 to 40% of patients actually suffers from persistent asthmatic breathing [4]; for the development of their therapeutic plan, high dose of inhaled corticosteroids (ICS), beta-agonists (LABA), oral corticosteroids and biologics are recommended [5]. Patients with severe persistent asthma are at a higher risk of negative outcomes, including recurrent and life-threatening exacerbations that significantly affect their quality of life (QOL) [6]. Respiratory Specialists (RS), as pulmonologists, allergists, and paediatricians, often implements a comprehensive strategy for management of uncontrolled symptoms, which can include the assessment of patients’ concordance to treatments, especially when a therapeutic switch is necessary [7]. Nowadays, healthcare is moving from a disease-centred approach, mainly focused on physio-pathological aspects of health, to a patient-centred approach, which emphasizes the illness sphere of patients’ and caregivers’ lives [8]. Furthermore, the awareness of the essential role played by listening and communication skills in determining the patient’s perception of his condition is increasing nowadays. Indeed, understanding illness helps physicians in focusing their care to best address the patient’s real needs. Given all these factors, an effective doctor-patient relationship based on trust is warranted [9]. Indeed, a trusted behaviour, able to lead to shared decision making, is particularly important in the management of severe asthma, as well as in other pathological conditions [10,11,12,13,14].

Narrative Based Research

Narrative medicine (NM) has been defined as ‘a clinical practice fortified with narrative competence to recognize, absorb, interpret, and respond to stories of the self and others’ [15]. NM is a useful tool to improve patients’ and physicians’ trust and to collect information on the perceived needs of patients and physicians [16]. Based on the NM approach, the ‘parallel chart’ is a tool for collecting the patients’ stories of illness and their interaction of the doctor site, written by physicians. It was implemented in daily medical practice by Rita Charon in 2012 [17] and is a private document in which physicians write also their reflective impressions and emotions towards their patients, without any restrictions [18, 19]. Using this tool, physicians consider the entirety of their patients’ humanity as ‘persons’ who participate in the treatment of their illness and express their goals in their experience [20]. These approaches have been recently discussed by the World Health Organization, which recommended narrative research to improve healthcare quality using a value-based approach [21]. Furthermore, we have recently highlighted in past NM projects applied to the respiratory field, the efficacy of this approach as an educational skill for doctors, and the importance of a trusty relationship with who live with Chronic Obstructive Pulmonary Disease with [22,23,24].

The main objective of the NM project named SOUND (the Italian acronym of “Writing Narratives on patients with Severe Asthma for a new and Efficacy Diversification and Valorisation of the care”) was to explore RSs’ relationships with severe asthmatic patients in Italy through the language analysis of their narratives. The secondary objective of the project was to understand the factors that influenced doctor-patient interactions and could endanger trust-building.

Methods

The SOUND project consisted of an educational course followed by a narrative research phase. Eighty-six Italian pulmonologists, allergists, and pediatricians (the ‘RSs’) with expertise in the management of severe asthma were invited to participate in the initiative. Participating physicians first attended a basic training course on writing, analyzing and applying the parallel chart into clinical practice. This course was implemented via webinars held by the ISTUD Foundation in June 2016. The main aim of this training was to transfer the same competence and methods on NM to all RSs in an effort to reduce bias due to personal writing skills.

For the second part of the project, the physicians who took part in the training were invited to write 5 parallel charts each. The parallel chart – designed by a dedicated board consisting of the Healthcare Area of the ISTUD Foundation and three RSs – a pulmonologist, an allergist and a paediatrician [co-authors of this paper] – was structured in prompts that followed a narrative plot (see Appendix 1) that recall the relationship of care from the first re-evaluation of the patient’s clinical condition until today. This semi-structured plot was specifically designed to help physicians overcoming writer’s block [25].

Inclusion criteria for analysis were writing about: a patient with a specific diagnosis of severe asthma; a ≥ 6-month-long doctor-patient relationship; and required that the patient be visited at least twice by the participating RS.

All narratives were collected anonymously from June to November 2016 through a dedicated online platform (https://www.surveygizmo.com/), with no restrictions on the length of narratives.

The study was approved by the ethics committee of the coordinating centre (Calabria Region, Center Area section), and informed written consent was obtained from RSs. All narratives were completely anonymous and RSs were specifically asked not to report any personal, institutional, or geographical information in full compliance with the Declaration of Helsinki.

The parallel charts were analysed according to the Grounded Theory methodology [25]: three researchers independently classified physicians’ narratives to identify recurrent topics [15]. Narratives were also analyzed using special semantic evaluation software, NVIVO 10, which assesses recurrent words and common synonyms to obtain previously unpredictable clusters. The language analysis was carried out using Bury’s classification of narratives [26]. According to this classification, narratives were ‘contingent’ when written very synthetically using a chronological style; they are ‘moral’ when characterized by diffusely moral judgments of the author regarding patients or caregivers; and they are ‘core’ when deeper descriptions of the patients’ illness and greater empathy are evident in the writing. In addition, the emotional examination was carried out using Plutchik’s theory (see Appendix 2) [27] and the emotions described were clustered into 5 main classes: positive emotions, emotions of fear and sadness, emotions of hate and anger, emotions of anticipation, and emotions of submission (that is impotence in facing illness). From observing the used language, three types of doctor–patient relationships were identified: the ‘easy’ and effective relationship wherein there is immediate sympathy between the patient and the physician; the ‘difficult’ one wherein the doctor feels the interaction with the patient as stressing; and the ‘evolved’ relationship that starts with difficulty but improves over time [24]. Descriptive statistics were used to examine the observed type and frequency of language, emotions and, relationships exhibited by RS in writing their parallel charts.

Results

Sixty-six RSs (77% of the webinar education class) completed the project. The total number of parallel charts collected was 314, an average of 4.7 narratives from each participant. The average time to write each narrative was 36 min and 47 min for adult and pediatric patients, respectively. Basic socio-demographic characteristics of the participants are summarized in Table 1. Adults and children were described in 246 and 68 parallel charts, respectively; however, two parallel charts (one for an adult and one for a pediatric patient) could not be analyzed because of unintelligible. One hundred and eighty-three narratives, 58% of the whole collection, mentioned allergies, allergens or allergy treatments and were clustered as allergy experiences, whereas the other 131 parallel charts (42%) were not considered as allergy since it was not clear whether or not referred to allergic patients.

Table 1 Basic socio-demographic characteristics of participating
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Classification of the narratives and doctor-patient relationships

At the beginning of the written text in parallel charts, doctor–adult-patient relationships were ‘easy’ in 57% of cases, and difficult in 43% of cases, while RSs and pediatric patients had an initially problematic interaction in 36% of cases. Consistent with Bury’s classification of narratives, 57% of the parallel charts about adults were considered ‘core’ narratives, whereas 37% ‘contingent’, due to the brevity and poverty of the emotions described therein. The remaining 6% were ‘moral’ narratives since they were written in a judgmental fashion towards patients and their families. Differently, comparing the physicians’ style of writing, the ‘moral’ style rose up to 19% of cases in narratives about children and adolescents, while ‘core’ and ‘contingent’ decreased to 48 and 33%, respectively (Table 2).

Table 2 Classification of narratives
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Factors influencing doctor–patient relationships at the beginning of the narratives

The initial adult patients’ emotions most frequently mentioned by RSs overall were fear (27%), submission (21%) and sadness (18%). The remaining narratives described patients with positive feelings such as joy, trust, and optimism (11%) or negative feelings such as anger and aggression (8%). These emotions directly influenced doctor–patient relationship, as well as physicians’ emotional status. In particular, difficult adult interactions were featured by a higher presence of patient’s anger (96% higher in ‘core’, 55% in ‘contingent’, and 80% in ‘moral’ narratives), compared with easy relationships, in which the prevalent emotion were fear-and-sadness and positivity (Table 3). Submission was present in narratives describing both difficult and easy relationships with adult patients. A particular pattern emerging from the narratives was that the relationship was easier and more effective when RSs took into account patients’ fear of the illness symptoms (Table 3). Another emotion felt by physicians in easy relationships with adult patients was mainly anticipation, since they were waiting to know how illness might have developed (Table 4). In contrast, in difficult doctor–adult-patient relationships, RSs often felt anger towards their patients’ feelings of resignation, because they wanted patients actively react to symptoms and improve their engagement in the care. Risk factors which most affected doctor–adult-patient relationships were: obesity, smoking, online research, and homeopathic therapies. Comorbidities, having pets, divorces, or grief were not found to influence the effectiveness of RSs’ interactions with asthmatic adults (see Appendix 3).

Table 3 Factors influencing doctor–patient relationships at the beginning of the narratives
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Table 4 Factors influencing doctor–patient relationships at the end of the narratives
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Results for children’s and adolescent’s emotions were quite similar to those for adult patients. Fear and sadness were the most frequent children’s emotions in easy relationships, whereas anticipation was the predominant physicians’ emotion towards pediatric patients (Table 3). In addition to that observed for adult patients, risk factors that influenced paediatric relationships were ‘totally absent’ or ‘hyper-protective’ families and prior hospitalizations, particularly in moral narratives (see Appendix 3).

Factors influencing the evolution of the doctor–patient relationship

Thirty-four percent of doctor–adult-patient relationships had evolved from a difficult to an easy relationship whereas only 9% remained difficult. In the paediatric context, 11% of difficult doctor–child-patient relationships remained problematic at the end. The highest percentage of initially difficult stories that evolved into positive ones were recorded in ‘core’ narratives (92% of ‘core’, 79% of ‘contingent’, and 69% of ‘moral’ narratives). During the progression of the parallel charts, adult patients’ emotions, as fear, sadness, submission, and anger were recorded only in those narratives where doctor–patient interactions were still difficult at the end, whereas in easy and evolved relationships emotions were mainly positive (Table 4). In the end, in ‘moral’ narratives wherein adult patients and RSs were on bad terms, physicians’ emotions declared were anger, up to hate. However, in difficult relationships between doctor and paediatric patient or children’s caregiver, anger was reported at the end of parallel charts from children and from their relatives, whereas this negative emotion was less present overall from physicians (Table 4).

Although it was not required, 82% of all the RSs’ parallel charts mentioned the therapies prescribed to their patients. The most commonly reported treatments were anti-immunoglobulin E (anti-IgE or ‘biological therapy’) and generic terms as ‘new therapies’, ‘innovative therapies’ for the treatment of allergic asthma, and ICS-LABA for the treatment of intrinsic asthma. In general, physicians proposed to switch the therapy to 83% of adult patients with extrinsic asthma; however, in 6% of the parallel charts, patients’ discontinuation of treatment or disapproval of the therapy switch by the patient, with no shared decision making, was reported. RSs wrote, with no explicit prompts, that their patients considered positively the efficacy of new therapies (61% for adults and 46% for children). In 60% of adult cases, this kind of therapies was not proposed by the physician, and it was not clear whether it happened because the latter opted for other treatments or because they had doubts on dealing with such a challenging procedure with a person they were not on good term with. To exploring the role of the relationship in the improvement of patients’ QoL, a cross analysis between the type of language, the kind of interaction and the acceptance of switch therapy was carried out (see Table 5). The percentage of adult patient’s activity restored were lower when the relation remained difficult than in those cases of positivity at the end (43% of ‘core’, 33% of ‘contingent’ and 57% of ‘moral’ narratives). The patient’s acceptance of a new therapy was more frequently described in ‘core’ narratives where the doctor- adult patient relationships ended easily (58 and 52% of cases begun positively and evolved, respectively), while ‘contingent’ writings were associated with no change therapy proposal, especially where the relation had not an easy beginning (67 and 55% of cases begun negatively and evolved, respectively). Conversely, the highest percentage of new therapies refusal was associated to relations that remained difficult (43% of ‘core’, 17% of ‘contingent’ and 14% of ‘moral’ narratives).

Table 5 Acceptance of therapy switch to anti-IgE in relation to the quality of the established doctor–patient relationship
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Most physicians concluded their parallel charts by explaining what they had learned by applying NM to their clinical practice (90% of all parallel charts collected). In particular, in the majority of cases, participants described the main positive perceived benefits of NM using words and phrases such as ‘empathy’, ‘courage’, ‘positivity’ and ‘importance of the family’, and they explicated that NM could have a key role in the improvement of trust in doctor–patient relationships (93% for adult patients and 78% for paediatric patients). In other narratives, RSs reported the importance of NM towards improving clinical aspects of asthma treatment (7% about adult and 22% about paediatric patients, respectively). The NVIVO analysis identified important words for differentiating difficult relationships from those evolved ones, including ‘courage’, ‘perseverance’ and ‘thoughtfulness’, which were used less frequently in narratives of problematic relationships (20% of difficult and 46% of positive relations at the end, respectively).

Discussion

The SOUND project is the first Italian NM-based research applied to the severe asthma field. From literature, people living with a chronic disease, such as severe asthma, are at greater risk for uncontrolled symptoms and recurrent hospitalizations [28], hence, there is a need of patients’ engagement in the care and trust in their physicians [10,11,12,13,14]. Furthermore, the interest of the scientific community on the deeply understanding not only of the patients’ needs but also of the caregivers’ role, is actually increasing in the care of respiratory chronic diseases [29]. According to participants, comprehension, interest, and anticipation were the main lessons learned after experiencing both the NM training course and the application of the narrative approach in their clinical practice. In particular, RSs reported that active listening enabled a deeper understanding of motivations that lead the person to evaluate and encounter new lifestyles and therapies.

Results from this project revealed that physicians involved in the care of severe asthma are generally able to manage their emotions, establishing good relations with their patients. In several cases, however, doctors’ anger remained difficult to manage, as confirmed by a recent study on self-reported physicians’ emotions [30]. According to our results, the main reason for being angry with adult patients were the patients’ distrust in prescribed therapies and a bad life styling as smocking or obesity, while in paediatrics the problematic relationships were caused by parental excess of anxiety or completely inattention towards children’s symptoms, leading to physicians’ ‘moral’ style and judgement. These negative feelings of hate and anger, indeed, had often impaired patients’ trust, which is desirable since it was shown in the literature that the establishment of a trusting relationship fosters the likelihood of adherence to prescribed drugs and control visits [13, 14, 30]. Further, when the relation is difficult, RSs proposed less frequently a change of therapy compared to easy ones. This tendency could be linked to the prescription of biological therapies that are considered challenging because of their high costs and the requirement of several subcutaneous injections performed in the hospital [31]. Other narratives from this project revealed in details that patients who refused a change therapy were not able to perform their daily activities and hobbies as they wished, so the relation remained difficult. Consequently, the ‘moral’ attitude and the prejudice on patients and caregivers is useless in establishing effective care. A recent NM educational project held in the respiratory field, indeed, highlighted the association between the physicians’ style of writing, according to Bury’s theory, and the attitude to doctor-patient communication. [24]. In particular, the empathic listening (‘core’ attitude) was often described by physicians as a way to earn the patients’ trust towards their options for better lifestyles and innovative treatments, confirming the importance of finding out relational strategies to reach efficacy and trusty encounter.

The unilateral point of view (from RSs) of the study is a limit of the SOUND project design; only physicians were involved in the initiative, with no written narratives of patients and caregivers. The emotional status of patients and their families were described and reported by RSs; therefore, patients’ emotions might have been misunderstood by their physicians. Consequently, the inclusion of patients’ and caregivers’ listening has to be considered the main objective for future NM projects applied to severe asthma, as recently published in other NM projects on chronic obstructive pulmonary disease [22, 23].

Conclusion

The SOUND project revealed that the NM approach and application of its parallel chart tool can be effective for helping physicians to better understand and more deeply analyse their own relationships with patients and caregivers. Although for many physicians it may be difficult to think of reflective writing as part of daily clinical practice [32], its introduction could be very useful to promote empathy in difficult cases for instance when the physician does not feel any spontaneous sympathy for the patient and their family [33]. Best practices in doctor-patient communication were diffusely investigated in the respiratory field [34, 35] but, at the moment, no studies have deeply examined the specific role of caregivers’ emotions in the establishment of effective relationships, despite the recognized importance of the family in the care of severe asthma [36]. In the present project, the role of caregivers in both asthmatic adults’ and paediatrics’ relation of care with physicians was observed; consequently, the analysis of not only patients’ but also their caregivers’ narratives could be interesting to carry out as a future challenge.