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

Figures & data

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)

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

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

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.

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.