Impact of patients’ attitudes and dynamics in needs and life experiences during their journey in COPD: an ethnographic study

ABSTRACT

Objectives

Despite its importance in determining coping behaviors, few studies have assessed the reality of chronic obstructive pulmonary disease (COPD) and its management perceived by patients. This study aimed at an in-depth understanding of this reality to identify COPD patients’ attitudes, COPD-shaped experiences, and overlooked needs during their journey.

Methods

Qualitative ethnographic study including 28 adult patients with moderate and severe COPD and 20 healthcare professionals. Study phases were (1) in-depth individual and (2) ethnographic interviews (qualitative), and (3) online questionnaires (quantitative), including 400 patients. Qualitative data were collected using audio, video, and observation notes. Three ethnographers analyzed data using a template covering different themes: attitudes of COPD patients, COPD-shaped experiences, and overlooked needs.

Results

We identified four attitudinal profiles of COPD patients: ‘active controller,’ ‘naïve minimizer,’ ‘defeated sufferer,’ and ‘struggling bon vivant,’ which were validated in 400 COPD patients, as well as five stages in the COPD patient journey and overlookedneeds. The ‘active controller’ profile was associated with slower disease progression compared with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles.

Conclusion

Four attitudinal profiles were distinguished and validated in a large sample of COPD patients. Patients’ attitudes impacted in COPD-associated experiences, limitations, and unmet needs, which differed among profiles.

KEYWORDS:

• COPD patient journey
• ethnography
• qualitative study
• attitudes
• coping
• COPD evolution

1. Introduction

Chronic Obstructive Pulmonary Disease (COPD) is a chronic degenerative disease characterized by progressive airflow limitation and ranks among the main causes of disability due to its high associated morbidity [1]. Airflow limitation is caused by a combination of multiple environmental and genetic factors and results in a series of symptoms, including fatigue, dyspnea, cough, sputum production, wheezing, and chest tightness, of which fatigue has a major impact on patients’ health and functioning [2–4]. In addition to high symptom burden, which limits patients’ daily activities and may result in psychological comorbidities (i.e., anxiety and depression) that impair their emotional well-being, COPD patients may have frequent hospital admissions due to exacerbations, impacting the healthcare system and generating high associated direct and indirect costs [5–8].

Even though COPD is incurable, an effective disease management can be achieved by a combination of lifestyle changes, including smoking cessation, healthy nutrition and physical exercise, and treatments, including pharmacological treatment, pulmonary rehabilitation, and, in severe cases, oxygen therapy, noninvasive ventilatory support, and lung volume reduction. These strategies aim to prevent disease progression and reduce symptoms and the frequency and severity of exacerbations, with the general goal of improving health-related quality-of-life (HRQoL) [2,6]. However, in addition to an effective disease management, HRQoL of COPD patients is influenced by their psychological distress and coping attitude, irrespective of lung function [9–11].

In the current patient-centered model of care, self-management is considered a mainstay in patients with chronic diseases, including COPD, enabling them to achieve disease control and improve outcomes [12,13]. Successful COPD management relies on patients’ healthy behaviors, including adherence to treatment and lifestyle recommendations, which are influenced by multiple factors [6,14,15], such as patients’ personality and ability to cope with the physical and psychological effects of the disease [16,17]. Furthermore, behavioral studies underscored the importance of the reality perceived by COPD patients regarding disease and its management (i.e., illness perceptions), in addition to their experiences, for successful COPD management, prompting the incorporation of psychological aspects of COPD in clinical care [18,19].

Despite the role of illness perceptions and life experiences in determining coping strategies and quality of life, studies assessing experiences of living with COPD are insufficient [9,20,21]. Consequently, a comprehensive understanding of patients’ reactions toward their disease and associated emotions and unmet needs throughout their journey is missing [12,18,22]. This qualitative ethnographic study aimed at an in-depth understanding of COPD patients’ attitudes and needs, and their influence on the different phases of their journey from the perspective of patients and healthcare professionals providing care to COPD patients. Additionally, the attitudinal profiles identified using qualitative methods were validated in a large sample of COPD patients.

2. Patients and methods

2.1. Study design

This was a qualitative ethnographic study including patients diagnosed with COPD (i.e., emphysema and chronic bronchitis) aged ≤60 and >60 years at similar proportions and healthcare professionals providing care to COPD patients. Qualitative research focuses on subjective experiences, and the ethnographic method allows to obtain additional data from non-verbal language and the observation of participants’ homes using generative techniques, enabling to gain deeper knowledge of patients’ life experiences. Ethnographic methods understand reality from a phenomenological basis, focused on comprehending the individuals’subjectivity and life experiences to acquire relevant knowledge.

Qualitative data were collected from February to June 2020 in two phases, including in-depth interviews to patients (Phase 1) and ethnographic interviews to patients and healthcare professionals (Phase 2). Phase 1 focused on obtaining insights regarding patients’ attitudes to cope with the disease, and Phase 2 focused on understanding the patients’ journey and unmet needs throughout the disease according to different attitudinal profiles. The ethnographic interviews with healthcare professionals exponentially increased data regarding patients’ experiences, as each of the professionals provided a detailed account of their interactions with multiple patients. To validate data obtained in Phases 1 and 2, quantitative data were collected from a large sample of patients during June 2020 using an online survey (Phase 3).

2.2. Sample, participants and contexts

Purposive sampling was used to recruit a representative sample of patients with severe and moderate COPD selected from public healthcare settings from Madrid, Catalonia, Andalucía, and Galicia. Patients were screened by a short telephonic interview to confirm their eligibility and a sample was selected balanced by sex, age segment (≤60 and >60 years), region of residence, area of residence (urban, suburban, and rural), employment status (employed, unemployed, and retired/pensioner), monthly income (<€1,250, €1,250-€3,330, and >€3,330), respiratory disease severity (moderate and severe), and smoking status (former smoker, smoker, and never smoked). The questionnaire to screen Phase 1 participants included additional questions regarding hospitalizations due to COPD symptoms, lifestyle, health beliefs, and disease perception to balance disease-coping styles, whereas the questionnaire to screen Phase 2 participants included four questions aiming to determine patients’ attitudinal profiles (identified in Phase 1) and balance the sample accordingly. Selected patients were scheduled for in-depth (Phase 1) and ethnographic (Phase 2) interviews, respectively. Given the purposive sampling used in this study and the careful design of the screening questionnaires, samples of 16 and 12 patients in Phases 1 and 2, respectively, were deemed sufficient for data saturation and variability. Twenty healthcare professionals from the public setting with >5 years of experience treating COPD patients were selected, considering different hospital sizes and regions across Spain, and were scheduled for an ethnographic interview (Phase 2). Participating healthcare professionals included four primary care physicians (PCPs), four pulmonologists, four emergency physicians, four nurses, and four pulmonary physiotherapists. Pulmonologists were required to treat >100 COPD patients/year and PCPs were required to refer >49 COPD patients/year to the specialist (i.e., pulmonologist), of which 33% must have severe COPD and 33% moderate COPD. Participants in Phase 3 were selected from a database including COPD patients and, to reach the estimated sample size, a database of general population was also used. Candidates were contacted by e-mail and, upon confirmation of COPD diagnosis (mild, moderate, and severe) using one of the survey’s questions, they were invited to complete the survey. Surveys with a no answer to the question regarding COPD diagnosis were excluded from the analysis.

Patients identified as in the final COPD stages (i.e., receiving palliative and terminal care) during the screening were considered unlikely to complete the subsequent ethnographic interview and were excluded from the study. Participants and those with relatives employed in an advertising agency, a market research company, or any newspaper, magazine, radio or TV, or who worked in a pharmaceutical or health-related company as clinicians, researchers, consultants or had any other role, were excluded from the study. The rationale of this criterium, routinely included in qualitative studies, is that participants with previous knowledge of the methods used in this study, similar to those used in market research, may provide inaccurate answers, compromising the reliability of the results. All study participants voluntarily took part in the study, signed a confidentiality agreement, and received a compensatory fee for their time. 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).

2.3. Data collection

Three consultant anthropologists with extensive expertise in ethnographic health studies and no relationship with the participants performed in-depth individual and ethnographic interviews. The former (Phase 1) were 45-minute telephonic semi-structured interviews, organized in four blocks: 1) patient context (i.e., personal, familiar, and social) and attitudes toward difficulties and healthy lifestyles; 2) life experiences and attitudes toward COPD (i.e., disease perception and its impact, expectations with treatment, and patients’ diligence); 3) patients’ needs regarding treatment and relationship with their physician (i.e., perception and attitudes); 4) additional information, including family’s involvement, digital expertise, and interest in seeking information. Data were collected using audio recording and notes.

The ethnographic interviews with patients (Phase 2) were 90-minute videoconferences with them at home and were divided in six blocks: 1) patient and context, including personality, routines, family, and hobbies; 2) perception of quality of life; 3) COPD perception and impact on patients’ lives; 4) patients’ daily live experiences, including their relationship with their physician; 5) patients’ journey, including unmet needs; 6) home tour, recorded by the patient after the interview, describing the different spaces of their homes and their uses. In addition to the home tour recorded outside the interview, patients also recorded a video introducing themselves and their disease status and evolution, resulting in a total of 120 minutes of collected data. During Blocks 2 (perception of quality of life) and 5 (patients’ journey) of the interview, participants completed two exercises. The details of the ethnographic interviews with patients are included in the Supplemental online material. After interviewing the patient, the ethnographer briefly interviewed his/her main caregiver to complement and compare patients’ information with the caregivers’ experiences and perspectives.

The ethnographic interviews with healthcare professionals were 90-minute videoconferences and were structured in five blocks: 1) profile and profession for PCPs and pulmonologists, and professional context for nurses, emergency physicians, and physiotherapists; 2) disease and COPD patient perception; 3) COPD patients’ journey and steps to provide care; 4) patients’ and physicians’ needs for PCP and pulmonologists, and perception of main agents (such as family, friends, PCP, pulmonologist, emergency physician, etc.) and their roles for nurses, emergency physicians and physiotherapists; 5) perception of industry services. Interviews were slightly modified according to the context in which the different healthcare professionals provided care. During Blocks 2 (disease and COPD patient perception) and 3 (COPD patients’ journey), participants completed two exercises. The details of the ethnographic interviews with healthcare professionals are included in the Supplemental online material.

Data from the ethnographic interviews were collected using video and audio recording and additional notes of the space, organization, and objects in patients’ homes, patients’/professionals’ appearance (outfit, accessories, self-care, posture), non-verbal communication, lack of correspondence between verbal answers and body language, and interaction with other persons present. Patients’ disease-related behaviors and objects were also noted, including breathing and moving difficulty, use of ventilators, and presence of tobacco and ashtrays. The ethnographers asked participants about these observations when appropriate to obtain further information.

The online survey for Phase 3 consisted in 15 questions, of which three referred to demographic characteristics, seven to clinical characteristics (i.e., pulmonary disease, severity, care, and hospitalizations), and five were single-answer questions aiming to assess respondents’ attitudinal profiles that referred to disease impact, relationship with treating physician, needs, expectations toward the disease and personality traits. Each question had four possible answers that, owing to the complexity of the attitudinal profiles described in Phase 1, corresponded to more than one attitudinal profile, albeit with variable confidence. For this reason, based on an algorithm developed ad hoc, answers were calibrated with different scores being given to each attitudinal profile. Scores obtained for each profile were added and patients were assigned a profile based on their highest total score.

2.4. Data processing and analysis

Fourteen (50%) interviews from Phase 1 and 2 were transcribed to provide a detailed record, which was complemented with observation notes and audio and video recordings. To eliminate any potential bias due to the subjective interpretation of researchers, the three ethnographers who conducted the interviews processed and analyzed the data from all interviews (i.e., triangulated data), both individually and during joint sessions. The ethnographers had previous expertise in performing attitudinal segmentations (i.e., identifying attitudinal profiles) in patients with other chronic diseases. The different categories of data, including verbal language, non-verbal language, and observation, were triangulated to gain further insight into the different topics or themes and ensure rigor [23]. Data were interpreted using the sense-making methodology, an inductive analysis allowing to identify patterns in the main topics to be studied from repeated and consistent evidence [24]. The topics investigated in this study were attitudes toward the disease, life experiences shaped by COPD, and unmet patients’ needs. First, researchers analyzed each of the interviews individually to identify relevant information regarding the topics investigated. Researchers iteratively reexamined the data in order to validate and/or refine the information for each topic and used a template covering the different topics and themes investigated to facilitate the extraction of relevant data. Researchers re-analyzed extracted data during joint sessions to identify patterns (i.e., repeated results) for each of the topics, allowing to identify the attitudinal profiles. Attitudinal profiles were defined based on the main features of four topics: attitude toward COPD, emotional impact, relationship with healthcare professionals, and attitude toward COPD treatment. For communication purposes, attitudinal profiles were presented organized according to two dimensions: 1) level of adherence to treatment and lifestyle recommendations and 2) level of activity and response to cope with the impact that COPD had in their lives.

2.5. Statistical analysis

Considering a COPD prevalence of 10% in Spain and a 50% of heterogeneity of the COPD population, a sample size of 385 patients was deemed necessary to represent the Spanish COPD population with a ± 5% precision and a 95% CI [25].

Categorical variables were described as frequencies and percentages. To correct for any potential bias in respondents’ age, sex and disease severity, data were normalized based on the demographic (i.e., age and sex) and clinical (i.e., disease severity) characteristics of the Spanish population with COPD [25].

3. Results

3.1. Characteristics of study participants

The study sample consisted of a total of 48 participants, of which 20 were healthcare professionals who participated in Phase 2 and 28 were patients, whose demographic and clinical characteristics are summarized in Table 1. Of these, 16 participated in Phase 1 and 12 in Phase 2, and owing to the purposive sampling of the study, they were distributed in similar frequencies among the different demographic and clinical categories considered.

Table 1. Demographic and clinical characteristics participants in phases 1 and 2, n (%).

	Phase 1n = 16	Phase 2 n = 12
Demographic characteristics
Sex
Male	8 (50.0)	8 (66.67)
Female	8 (50.0)	4 (33.32)
Age (years)
40–60	6 (37.50)	6 (50.0)
> 60	10 (62.50)	6 (50.0)
Region of residence
Catalonia	4 (25.0)	3 (25.0)
Madrid	4 (25.0)	2 (16.67)
Andalucía	3 (18.75)	4 (33.32)
Galicia	5 (31.25)	3 (25.0)
Area of residence
Urban (> 100,00 inhabitants)	9 (56.25)	8 (66.67)
Suburban (30,000–50,000 inhabitants)	4 (25.0)	2 (16.67)
Rural (> 10,000 inhabitants)	3 (18.75)	2 (16.67)
Employment status
Employed	4 (25.0)	5 (41,67)
Unemployed	2 (12.50)	1 (8,33)
Retired/Pensioner	10 (62.50)	6 (50.0)
Monthly income
< 1,250 €	8 (50.0)	3 (25.0)
1,250–3,330 €	4 (25.0)	6 (50.0)
> 3,330 €	4 (25.0)	3 (25.0)
Clinical characteristics
Respiratory disease severity
Moderate	9 (56.25)	6 (50.0)
Severe	7 (43.75)	6 (50.0)
Hospitalizations due to respiratory disease
Yes	12 (75.0)	6 (50.0)
No	4 (25.0)	6 (50.0)
Smoking status
Previous smoker	11 (68.75)	10 (83,33)
Smoker (> 2 packs/week)	3 (18.75)	2 (16.67)
Never smoked	2 (12.50)	0 (0)
Comorbidities
Cardiovascular disease	4 (25.0)	1 (6.25)
Cardiac insufficiency	1 (6.25)	0 (0)
Arrithmia	1 (6.25)	1(6.25)
Auricular fibrilation	0 (0)	0 (0)
Anxiety and/or depression	2 (12.50)	0 (0)
Anemia	0 (0)	0 (0)
Osteoporosis	0 (0)	0 (0)
Osteopenia	0 (0)	0 (0)
Osteoarthritis	0 (0)	0 (0)
Lung cancer	0 (0)	0 (0)
Bronchiectasis	0 (0)	0 (0)
Sleep apnea	2 (12.50)	2 (16.67)

3.2. Attitudinal profiles of patients with COPD

Patients interviewed in Phase 1 were categorized into four attitudinal profiles: ‘active controller,’ ‘naïve minimizer,’ ‘defeated sufferer,’ and ‘struggling bon vivant,’ based on their level of adherence to treatment and lifestyle recommendations and their level of activity and response to cope with the impact that COPD had in their lives. While patients with the ‘controller’ and ‘minimizer’ profiles adhered to treatment and lifestyle recommendations, those with the ‘sufferer’ and ‘bon vivant’ profiles showed poor adherence, including excessive use of rescue medication to compensate for suboptimal use of maintenance medication. Similarly, patients with the ‘controller’ and ‘bon vivant’ profiles were highly active and responsive to cope with the impact that COPD had in their lives, albeit in opposite manners, whereas those with the ‘minimizer’ and ‘sufferer’ profiles showed limited proactivity and response. In addition to the two main attitudes defining the profiles (i.e., adherence and proactivity levels), patients with all four profiles differed in their attitudes regarding four additional topics, summarized in Table 2. Patients with the ‘active controller’ profile adapted their decisions and lifestyle to COPD, placing their disease at the center of their lives and sought further information to ensure the best possible outcome. Patients with the ‘naïve minimizer’ profile were unrealistic and alienated toward their disease and created their own reality, continuing with their previous activities and avoiding those that put their health at risk. Patients with the ‘defeated sufferer’ profile were pessimistic, depressed, and lacked self-discipline, resulting in a feeling of guilt. Patients with the ‘struggling bon vivant’ profile continued with their bad habits and expected rescue treatment to compensate for their harm. Physical activity, nutrition, smoking, and respiratory physiotherapy were traits further defining the different attitudinal profiles.

Table 2. Main features of the attitudinal profiles of patients with COPD

Topics	Active Controller High level of adherence and proactivity	Naïve Minimizer High level of adherence, limits activities impacting quality of life	Defeated Sufferer Pessimistic and overwhelmed by the disease. Poor self-discipline with treatment	Struggling bon vivant Same habits to live the present, nonadherence to recommendations
Attitude toward COPD	COPD-centered lifestyle to achieve disease control and stable life ‘I am told I have COPD, my life has to change.’ 61, Madrid ‘Despite my disease, I choose to be happy and I am going for it.’ 82, Galicia	Despite avoiding activities that make them feel sick, aim to carry on with life as before COPD. ”What I can’t do is to risk having a bad time.” 76, Catalunya ‘If I do what is needed, everything will continue as usual. Nothing is happening.’ 78, Madrid ‘I am just fine, I won’t cross boundaries or stress myself, I take care of myself just enough.’ 79, Catalonia	Pessimistic, depressed and overwhelmed by disease, self-isolate ‘There is no way out, and I don’t have the will to do something else anymore.’78, Madrid	Maintain bad habits and routines with self-deception” Everything is harmful, being restrictive is worthless.” 57, Madrid
Emotional Impact	Proactive in achieving disease control ‘It is always possible to do more to overcome this.’ 59, Catalonia	Alienation, almost naïve. Quitted some activities but continue others to avoid feeling a life change ‘If I know I won’t make it, I prefer not to go for the ascent to reach the top.’ 55, Andalucia	Demotivated and pessimistic, guilt due to lack of will. Restrict previous activities ‘I am very sedentary and can’t quit sweets, I have become inconstant, I can’t deal with this negligence.’ 82, Andalucia ‘My life has rather changed and I don’t put any effort into anything anymore.’ 85, Catalonia	COPD is a problem but feel unguilty for their harmful lifestyle ‘For what I have left, I will continue smoking.’ ‘I find tobacco relaxing and I like it a lot.’, 57 Madrid
Relationship with HealthcareProfessionals	Good. Challenges healthcare professionals and seeks reassurance ‘I have my pulmonologist phone, we are constantly in touch, I keep on calling her to ask her about everything … ’ 57, Andalucia	Trust, but avoid contacting specialist and are not involved ‘When I visit the doctor, I avoid digging into something that may not be good to hear.’ 78, Madrid	Specialist is a reference, but help provided is insufficient ‘I never feel that my doctor is supporting me in the small steps needed to stop smoking.’ 78, Galicia	Lack of trust and disinterested in healthcare professionals ‘I take my medicine before the appointments with the pulmonologist to avoid “sermons”.’ 63, Catalonia
Attitude toward COPD Treatment	Treatment is an ally. Seek further information ‘I need to adapt my treatment to my routine.’ 63, Catalonia	Follow treatment and recommendations to avoid life changes ‘I’d never reach the point to feel breathless, that is what the inhaler is for.’ 55, Galicia	Is the only option but are poorly adherent due to lack of interest ‘Whether I take the medication or not, I will feel bad again the next week.’ 85, Catalunya	Rely on rescue treatment to compensate for bad habits ‘Puff done in the morning, so two more smokes today.’ 58, Galicia

Abbreviations: COPD, chronic obstructive pulmonary disease

3.3. Patient’s journey according to attitudinal profile

To analyze COPD patients’ perceptions throughout the different stages of their journey according to the different attitudinal profiles, we divided the journey in five main stages, including ‘initial stages’ (i.e., first symptoms), ‘COPD diagnosis,’ ‘treatment,’ ‘worsening,’ and ‘final stages,’ based on data obtained from the interviews with healthcare professionals. In each stage, we identified relevant topics, summarized in Table 3 Table 4, with different associated life experiences and disease-coping mechanisms for all four attitudinal profiles. Specifically, we identified that patients’ attitudes after diagnosis and treatment start were fundamentally different between profiles and likely critical to determine COPD-associated life experiences and limitations. We found that patients with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles appeared to show limitations at a faster rate than patients with the ‘active controller’ profile, who showed slower accrual of limitations, according to healthcare professionals (Figure 1). After treatment start, ‘controller’ and ‘minimizer’ patients experienced a sustained improvement and their disease evolved to severe COPD at an advanced age, whereas patients with the ‘sufferer’ and ‘bon vivant’ profiles experienced a severe crisis resulting in intensive care unit (ICU) admissions, a need for noninvasive mechanical ventilation, and earlier worsening of their health status in agreement with their level of activity and adherence to treatment and lifestyle recommendations. As an example of poor adherence of ‘sufferer’ patients, a healthcare professional stated that ‘Sometimes patients say that they are taking the drug but its administration is incorrect and therefore, the medication does not seem to be working.’ (PCP, Madrid). Likewise, ‘controller’ patients showed a lower frequency of hospital and ICU admissions compared with ‘bon vivants’ and ‘sufferers’, reflecting a slower disease evolution. This association was suggested, among others, by an Emergency Physician: ‘I just know that those COPD patients who smoke when they are feeling better before being discharged from the hospital will be back in a few weeks. Others are very worried and know the disease very well, and don’t come often.’ (Emergency Physician, Valencia). Patients with the ‘controller’ profile experienced few admissions and were more likely to die from conditions other than COPD, as stated, among others, by a Pulmonologist: ‘A “controller” patient may die due to other pathologies without barely being admitted to the hospital.’ (Pulmonologist, Barcelona).

Figure 1. Representation of a model for the accrual of limitations in quality of life over time of the four attitudinal profiles, based on the interviews with healthcare professionals.

Table 3. Patient journey according to attitudinal profile

Stage in the Patient Journey	Topics	Active Controller	Naïve Minimizer	Defeated Sufferer	Struggling bon vivant
Initial Stages – First Symptoms	COPD symptom perception and attitude	Aware and concerned about symptoms. Seek doctor’s assistance ‘I feel something is going on with me, I’ll go to the doctor as soon as I can.’ 57, Andalucia	Unconcerned about symptoms. Adapt routine to minimize their impact. ‘I’m an old man, this must be normal I guess.’ 76, Catalonia	Associate symptoms with age, considering them unavoidable. ‘I am sure this permanent shortness of breath means something bad is happening with me.’ 85, Catalonia	Associate symptoms to smoking, ignoring them. ‘This has to be smoke-related coughing, I’ll be fine with it and with my smoke, anyway.’ 58, Galicia
COPD Diagnosis	COPD perception and reaction to diagnosis	Complete lifestyle change. Seek further information. ‘Please, doc, can you send me more info about the disease? I’m sure I can do my best to get better soon.’ 82, Galicia ‘Some patients after diagnosis start asking questions about nutrition, exercise, how to avoid limitations … to change their habits.’ Primary Care Nurse, Madrid	Accept disease as something normal and unimportant. Minimal lifestyle changes. ‘I won’t get too involved in this, since nothing serious is happening with me.’ 55, Andalucia ‘Some patients, when you diagnose them, it’s like it does not go with them, and until they realize how limited their life is they will not do anything’. PCP, Catalonia	Fear and anxiety toward disease severity, hampering reaction. ‘OMG, what’s gonna happen with me from now on? Will there be a way out from this?’ 77, Madrid	Feel guilt and uncertainty, yet no lifestyle change. ‘Ok, I can live with it … I won’t stop doing the things I like the most.’ 63, Catalonia
Treatment	Treatment perception and attitude	Need to adapt treatment to routine. Good use of devices ‘I leave my inhaler on top of my bed table so that I will never forget to take it.’ 59, Catalunya ‘Sometimes they came informed with a lot of questions about new treatments or therapies.’ Pulmonologist, Valencia	Alienation results in refusal to start treatment, using it as rescue ‘Why carrying the inhaler with me? This is only for special and complicated situations.’ 76, Catalonia	Too complex and low attention to device instructions, hampering compliance ‘I never remember how to take the medication, I already have enough to deal with.’ 82, Andalucia ‘These patients are very disconnected and unmotivated when I explain devices or care. I find it hard that they pay attention to me.’ Nurse, Valencia	Poor adherence, worse when symptoms attenuate. Careless use of devices ‘I barely know how to use that thing. Why is it so complicated?’ 58, Galicia
	Mild crisis management	Good management, proactive toward prevention and treatment ‘You will never see me next to smokers, this can be very bad for my lungs.’ 61, Madrid	Avoid activities potentially leading to mild crisis and withhold symptoms ‘Going to the hike could be risky, I’d rather pass.’ 78, Madrid	Emotionally magnify mild crisis, increasing their isolation ‘I won’t go to my mother in law’s house this weekend, I don’t want to go to the ER again.’ 79, Galicia	Ignore symptoms until they become unbearable and need to go to the ER ‘I even know the ER staff already, they know I will stop by after weekends.’ 57, Madrid ‘When they have a small crisis they come very scared and say they are going to change, but within hours of leaving here they are sure to smoke again.’ PCP, Galicia
Worsening	Reaction to severe crisis and emergency room admissions	Timely visit the emergency room, avoiding uncontrol and keeping calm. Learn from the experience and seek how to improve prognosis and avoid future crisis ‘I always listen to my physiotherapist instructions so this ER admission never happens again.’ 61 Madrid	Traumatizing experience, causing their reality to fall apart, to internalize disease and forcing them to evolve into ‘controller’ or ‘sufferer’ ‘Oh no, in the end, this is a serious thing. I dread what could come next.’ 55, Galicia ‘This is the moment when they realize that COPD is a serious disease and that they have being losing time to fight it.’ PCP, Madrid	Feel safe and cared for in the hospital but are pessimistic and show no emotional improvement ‘I do not know why I take all these measures, my lungs are only getting worse.’ 85, Catalonia	Relieved after recovery. Take the situation seriously and may transiently consider a lifestyle change, even though are eager to recover normality ‘I’m gonna have to reduce my smoking If I want to survive to this. It’s not a joke.’ 58, Andalucia ‘Some of the patients coming often to the ER, once we have opened their lungs, can get out of the facility for a smoke; it feels like they have given up.’ ER Specialist, Valencia
Final Stages	Emotional impact of resignation	Fear and frustration for the situation, causing a psychological impact ‘At least I have my oxygen tank to keep things up’ 82, Galicia ‘Those patients more proactive are rarely found in ICU for respiratory reasons.’ ICU Physiotherapist, Catalonia	N/A Evolved into ‘controller’ or ‘sufferer’	Feel anxiety, fear, pessimism and defeat. Increased depression and isolation. Accept COPD outcomes as they become fully aware of disease evolution ‘Once they (Defeated Sufferer) enter this stage, it is a confirmation that there is no solution for them.’ Pulmonologist, Madrid	Reality shock, realize the difficulty of maintaining lifestyle. Accept COPD outcomes as they become fully aware of disease evolution ‘When they reach this stage, they are aware of what’s happening, but it is too late and everything goes very fast.’ Pulmonologist, Catalonia

Abbreviations: COPD, chronic obstructive pulmonary disease; ER, emergency room; ICU, intensive care unit; N/A, not applicable; PCP, primary care physicianc

Table 4. Unmet needs of COPD patients

Needs	Quotes	Level of relevance
Topic 1. Education and Information
Accelerate diagnosis	‘I am getting old, this is normal.’ 57, Madrid. Bon vivant ‘Nothing happened after the tests.’ 57, Andalucia, Active controller	Struggling bon vivant, defeated sufferer, naïve minimizer > active controller
Raise patients’ awareness of COPD impact	‘I am told I have COPD, but that’s nothing.’ 55, Galicia. Minimizer	Struggling bon vivant > defeated sufferer > naïve minimizer > active controller
Patient education regarding use of medication	‘This is so complicated. I don’t even know if I’m taking it properly.’ 85, Catalunya. Defeated Sufferer	Struggling bon vivant, defeated sufferer > naïve minimizer > active controller
Minimize fear of corticoid use	‘I won’t let this thing give me osteoporosis.’ 57, Madrid. Bon vivant	Defeated sufferer > naïve minimizer > struggling bon vivant > active controller
Identify need of emergency care	‘I don’t know whether I go to ER or not. Will this pass?’ 79, Galicia. Minimizer	Defeated sufferer > struggling bon vivant > naïve minimizer, active controller
Topic 2. Patient Management
Emotional management	‘My smoke is the only thing I have left to release the anxiety I feel with all this.’ 78, Madrid. Sufferer	Struggling bon vivant, defeated sufferer > naïve minimizer > active controller
Simplify use of devices	‘It is difficult to comply with treatment, everything gets complicated.’ 82, Andalucia. Sufferer	Struggling bon vivant, defeated sufferer > naïve minimizer > active controller
Tools and services improving quality of life	‘Not sure what I can do to get out of it. Is there anything I can do to feel better?’ 82, Galicia. Active Controller	Highly relevant to all profiles
Tools to register episodes and disease evolution	‘I find it difficult to remember what happened.’ 63, Catalunya. Bon vivant	Struggling bon vivant, defeated sufferer, naïve minimizer > active controller

Abbreviations: COPD, chronic obstructive pulmonary disease; ER, emergency room

3.4. Unmet needs of patients with COPD

Unmet needs of COPD patients, brought up by both patients and healthcare professionals, were classified in two main topics: ‘Education and Information’ and ‘Patient Management’. Even though the needs identified were relevant to all four attitudinal profiles, their level of relevance differed (Table 4).

3.5. Quantitative validation of attitudinal profiles

Of the patients with confirmed diagnosis and 8113 candidates invited to complete the online survey, 400 confirmed their COPD diagnosis in one of the questions, and completed it. Of the total surveyed population, 29.8%, 24.6%, 10.7%, and 34.9% were classified in the ‘active controller,’ ‘naïve minimizer,’ ‘defeated sufferer,’ and ‘struggling bon vivant’ profiles, respectively, validating the attitudinal profiles in the general COPD population. The frequency of patients in different categories regarding sex, age, hospitalizations, ICU admissions, outpatient physiotherapy, disease severity, and treating physician according to attitudinal profile are summarized in Table 5 and Figure 2.

Table 5. Distribution of COPD respondents according to demographic, clinical, and treatment characteristics and attitudinal profile, % N = 400

	Active Controller	Naïve Minimizer	Defeated Sufferer	Struggling Bon Vivant	Total
Demographic characteristics
Sex
Male	76	79	77	80	78
Female	24	21	23	20	22
Age (years)
40–59	38	19	26	29	29
≥ 60	62	81	74	71	71
Clinical and treatment characteristics
Hospitalizations
Yes	39	28	44	24	32
No	61	72	56	76	68
ICU admissions
Yes	6	1	4	3	4
No	94	99	96	97	96
Outpatient physiotherapy
Yes	33	34	18	34	32
No	67	66	82	66	68

Abbreviations: COPD, chronic obstructive pulmonary disease; ICU, intensive care unit

Figure 2. Distribution according to disease severity (A) and main physician specialty (B) of patients included in each of the four attitudinal profiles based on the online survey.

4. Discussion

Results from this ethnographic study showed that, according to the level of adherence to treatment and lifestyle recommendations and the level of proactivity to cope with COPD impact, patients with moderate and severe COPD could be assigned to four profiles: ‘active controller,’ ‘naïve minimizer,’ ‘defeated sufferer,’ and ‘struggling bon vivant.’ These attitudinal profiles were further defined by additional emerging topics and validated in a large representative sample of the Spanish COPD population, showing their generalizability. Based on data collected from patients and healthcare professionals, we described five main stages in the COPD patient’s journey and identified unmet patients’ needs related to their education and management. According to healthcare professionals, patients’ attitudes impacted life experiences and limitations, resulting in patients with the ‘active controller’ profile showing a slower dynamics of accrual of limitations, followed by patients with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles.

In this study, attitudinal profiles were identified and described through a deep understanding of behavioral, cognitive, and emotional aspects of ‘life with COPD’ using qualitative methods. Ethnographic interviews enabled to collect detailed non-verbal and verbal data describing life experiences, health beliefs, and coping styles, resulting in a comprehensive characterization of attitudinal profiles, which, to our knowledge, remained unestablished. Previous studies have assessed psychological traits, disease perceptions, and coping styles using psychometric instruments (i.e., questionnaires), showing complex relationships between emotional and psychological factors [21,22,26,27], but, unlike these, the ethnographic methods used in this study enabled to comprehensively understand patients’ subjectivity and perspectives on their disease from an open standpoint, considering all emotional components and health-related behaviors reported by patients and healthcare professionals [28].

Attitudinal profiles defined in this study showed differences in the level of proactivity and response to the impact of COPD in patients’ lives and the level of adherence to treatment and compliance with lifestyle recommendations. Even though, to our knowledge, similar classifications simultaneously considering these two parameters are lacking, previous studies using qualitative methods and general and COPD-specific questionnaires had classified patients in different coping styles, a concept similar to the level of proactivity and response used in this study [9,17,27,29,30]. A previous qualitative study identified patients with positive coping strategies adjusted to ‘life with COPD’ – comparable to those with the ‘active controller’ profile – and patients with behavioral, emotional, and psychological dysfunctions (i.e., anxiety and depression) due to maladaptation to COPD – comparable to those with the ‘defeated sufferer’ and ‘naïve minimizer’ profiles [9]. Similarly, another qualitative study reported different ways of adapting to the sense of loss caused by COPD [31]. Likewise, using psychometric measures, relationships between depression and ‘avoidance-type’ coping (denial), and between anxiety and ‘avoidance and passive reaction’ coping – comparable with the ‘defeated sufferer’ and ‘naïve minimizer’ profiles – have been reported [32–34]. ‘Catastrophic withdrawal’ coping strategies and lower levels of self-efficacy of symptom management were associated with depression and anxiety, similar to the ‘defeated sufferer’ profile [27]. Regarding adherence to treatment and lifestyle recommendations, their varying levels according to attitudinal profiles agree with the psychological characteristics and reactions to the disease of each profile. Accordingly, ‘active controllers’ showed high self-management skills and ‘naïve minimizers’ showed good self-management skills, whereas ‘defeated sufferers’ were unable to self-manage their disease and ‘bon vivants’ showed inappropriate self-management.

In addition to defining attitudinal profiles, this study identified patients’ reactions to ‘diagnosis,’ ‘treatment start,’ and ‘mild crisis’ as most distinct among profiles and consequently, were likely crucial stages of the patient’s journey, shaping their physical and emotional status. Moreover, the increased symptom burden and severity of exacerbations associated with COPD progression influenced the evolution of each attitudinal profile. However, the evolving attitudes and reactions remained distinct among profiles, with the exception of patients with the ‘naïve minimizer’ profile who became fully aware of their disease after experiencing a severe crisis and changed to ‘active controller’ and ‘defeated sufferer’. The preservation of profiles throughout the journey suggests that disease perception, expectations, and psychological traits remained unchanged. Considering the acknowledged importance of modifying disease perceptions to encourage healthy and proactive behaviors, interventions to promote these behaviors targeting the crucial stages identified in this study (i.e., ‘diagnosis,’ ‘treatment start,’ and ‘mild crisis’) are possibly more likely to succeed [18].

The slower accrual of COPD-associated limitations in patients with the ‘active controller’ profile compared to patients with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles, suggest a relationship between patients’ attitudes and disease progression. While positive, compliant and proactive attitudes of the ‘active controller’ profile minimized the deterioration of health status and consequently, limitations, the unhealthy lifestyle of patients with the ‘struggling bon vivant’ profile were detrimental for their health status, resulting in a faster accrual of limitations. Lack of motivation and reaction in patients with the ‘defeated sufferer’ profile may explain their faster accrual of limitations, similar to previous studies showing impaired reactions toward the disease due to anxiety, depression, and vital exhaustion, resulting in worse respiratory parameters [32,35]. Relationships between psychological aspects, including coping styles and disease perceptions, and health-related outcomes, including HRQoL and psychological distress, have been described in previous studies [9,26,29]. However, relationships with disease-specific health status, measured as lung function, and COPD progression were unclear, with some studies reporting weak-to-moderate relationships and other reporting psychological distress and difficulty coping as predictors of disease prognosis, irrespective of lung function [10,21,36]. Even though assessing clinical parameters was beyond the scope of this study, the clinical implications regarding the influence of patients’ attitudes in COPD progression warrant future studies.

This study identified a series of unmet needs related to patient education and management, particularly relevant in patients with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles. Similar to previous studies, patient education and information, previously shown to empower patients to change their health-related behaviors, emerged as gaps in COPD patient care [37–39]. Addressing these gaps, including those related to use of medication and identification of need for emergency care, may likely contribute to increase treatment adherence, minimize the impact of exacerbations, and modify health-related behaviors, resulting in improved outcomes [19,40]. Furthermore, raising awareness of COPD and changing its perception to a treatable condition may effectively encourage positive proactive behaviors [41].

Results from this study should be interpreted in the context of general limitations associated with its qualitative nature regarding sample size and generalizability of the results. Due to the ethnographic methods used in the study, the number of interviews to patients and healthcare professionals was limited to a feasible number. However, Phase 2 of this study included healthcare professionals who provided perspectives from their interaction with multiple patients, indirectly increasing the number of patients assessed and the representation of the Spanish COPD population and their experiences. Regarding the generalizability of the results, this study included their validation in the general COPD population using an online survey, confirming that the attitudinal profiles identified were present in the Spanish population of COPD patients. Most of the topics emerging for each attitudinal profile were related to reactions toward their disease, influenced by disease perceptions and psychological traits, and few were related to healthcare issues, supporting the transferability of the results to other settings. However, a refinement of the attitudinal profiles in other countries may be necessary given the potential influence of the unique features of the Spanish healthcare model, which provides free universal care and treatments. Despite these limitations, this study captured the experiences and attitudes of a large sample of patients with moderate and severe COPD during their journey, defining four attitudinal profiles. These were confirmed in the general population with COPD, demonstrating the generalizability of the qualitative results and their potential applicability in patient management. In this regard, the identification of different experiences and attitudes during the phases of patients’ journey may help healthcare providers to determine the most suitable moment to introduce interventions, such as physiotherapy and pharmacotherapy, and adapt the complexity of treatments, such as physiotherapy routines, at an individual patient level according to their attitudinal profiles, with the goal of optimizing adherence and compliance. The results from this study regarding the influence of patients’ attitudes on COPD evolution underscore the importance of providing patients and healthcare providers with tools to modify patients’ attitudes and warrant future quantitative studies to confirm the clinical implications of these results.

5. Conclusions

In summary, results from this study show that patients with moderate and severe COPD belong to four attitudinal profiles according to their level of adherence and compliance with lifestyle recommendations and their level of proactivity to cope with the impact of COPD in their lives. Attitudes impacted COPD-associated life experiences and limitations, with proactive and adherent behaviors being associated with a slower accrual of limitations. In addition, we identified patients’ unmet needs related to their management and education, providing opportunities for healthcare providers and policymakers to improve COPD patient management.

Declaration of interest

I Arroyo-Fernández has received teaching fees from Astra Zeneca, Pfizer, Boheringer, Glaxosmithkline, Bial and Chesi. R Rubio is a Piece of Pie employee. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Acknowledgments

The authors would like to thank all patients and healthcare professionals for willingly participating in this study, as well as researchers from A Piece of Pie for data collection and analysis. The authors also would like to thank Sara Cervantes of i2e3 Biomedical Research Institute for medical writing assistance during the preparation of the manuscript.

Availability of data

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.

Supplemental material

Supplemental data for this article can be accessed here.

Additional information

Funding

AstraZeneca Farmacéutica Sapin S.A. funded medical writing support, with no role in the analysis, decision to publish or preparation of the manuscript.