Factors influencing exacerbation-related self-management in patients with COPD: a qualitative study

Figures & data

Table 1 Inclusion and exclusion criteria

Patients with a clinical diagnosis of COPD
Inclusion	Exclusion
Age >40 years	Diagnosed with cognitive impairments
FEV1/FVC ratio <70%	Primary diagnosis of asthma, cardiac disease or other major functionally limiting diseases
GOLD stage ≥2, spirometry	Life expectancy ≤3 months
FEV1<80% predicted
Adequate communication skills ≥1 reported exacerbation* in the past 12 months prior to entering this study (to ensure adequate recall of their experience of an exacerbation)

Notes:

* An exacerbation was defined as a period of symptom deterioration in which use of a course of corticosteroids and/or antibiotics was required or hospitalization was necessary. Data from Global Initiative for Chronic Obstructive Lung Disease (GOLD).¹

Abbreviations: GOLD, Global Initiative for Chronic Obstructive Lung Disease; FEV₁, forced expiratory volume in 1 second; FVC, forced vital capacity.

Table 2 Baseline characteristics of the study population (N=15)

ID	Sex	Agea	Living situationb	Education levelc	Smoking	GOLD staged	Self-reported exacerbations per yeare	Time period from last exacerbation in months
R01	F	66	A	Medium	Former	1	1	1–3
R02	M	59	LPC	Medium	Current	3	3	1–3
R03	F	64	A	Medium	Current	1	1	>12*
R04	F	74	LP	Low	Former	2	0	6–12
R05	F	74	LP	Medium	Current	3	1	1–3
R06	M	73	A	Low	Current	2	3	6–12
R07	F	81	A	Medium	Former	3	2	<1
R08	F	74	A	High	Current	2	1	1–3
R09	M	67	LP	Low	Former	2	3	<1
R10	M	88	A	Medium	Former	3	1	<1
R11	M	76	LP	Low	Former	4	5	<1
R12	M	64	LP	Medium	Current	3	2	<1
R13	F	59	LP	Low	Former	2	5	1–3
R14	M	64	LC	High	Former	3	1	6–12
R15	M	68	LP	High	Former	3	4	<1

Notes:

a Age at time of interview.

b A, living alone; LP, living with life partner; LPC, living with life partner and children; LC, living without a partner and with children.

c Low, primary school through vocational training; medium, secondary school or vocational training; high, college or university degree.

d According to GOLD classification in medical chart.

e Amount of exacerbations determined by amount of prescriptions of prednisone and/or antibiotics for worsening of lung symptoms, estimated by patients themselves.

* Last exacerbation was 16 months ago.

Abbreviation: GOLD, Global Initiative for Chronic Obstructive Lung Disease.

Table 3 Operationalization types of self-management actions

Type of self-management actions	Explanation
Absence of self-management actions to reduce symptoms	Performed actions were similar to self-management actions in the stable phase (not experiencing an exacerbation). Increasing inhalation medication was sometimes performed as patients are used to do when experiencing daily fluctuations in symptoms.
Self-management actions to reduce symptoms	Taking rest, performing breathing or sputum expectoration techniques and increasing inhalation medication/using an extra dosage of short-acting inhalation medication. If applicable: self-treatment with antibiotics and/or prednisolone.
Contacting an HCP	• Adequately contacting HCP: Patients directly contacted an HCP in case of symptom deterioration or monitored symptoms carefully and contacted an HCP when crossing the mutual agreed threshold in symptoms.
	• Postpone contacting HCP: Patients postponed to contact an HCP or mentioned that their HCP advised them to contact earlier in the future.

Abbreviation: HCP, health care provider.

Figure 1 Conceptual model describing factors influencing recognition of exacerbations and performance of self-management actions.

Abbreviation: HCP, health care provider.

Table 4 Illustrative quotes related to identified factors influencing exacerbation-related self-management

Influencing factors	Quotes
Acceptance of COPD	Q1: “You can put on the brave face and say ‘I got nothing’ but that is nonsense of course. (…) You can better say ‘it is this way’. Okay. And then you can react on it yourself ” (R08).
	Q2: “I mean. I have accepted that. I know that at some point it’s not going to resolve so eh ehm … In the beginning I would have had eh ehm … a difficult time with it, but at the point where you accept it isn’t going to go away, those lungs have been affected, the only thing possible is for it to be stable, that’s my starting point” (R14).
	Q3: “I am someone who doesn’t want to admit it at all, so you just keep doing everything” (R02).
Perceived severity of symptoms	Q4: “Yeah, then you start to wheeze a bit, but apart from that it it is not too bad” (R10). (I: “yes … but so … you say it’s not too bad … but is it really alright then?”) R10: “Well … not always …”.
	Q5: “I don’t think it bothers me that much. (…) My children say it does, but they look at it differently” (R08).
	Q6: “I have seen it with my dad, he didn’t go outside anymore, he just sat on a chair, kept on going but didn’t do anything. But well, that’s looking back, I never thought that I would also be such a COPD patient. But it did happen to me and now I think I have to stay physically active … If you would like to resist those infections every time” (R12).
Knowledge of exacerbations	Q7: “The sooner I contact my general practitioner, the sooner the medication is successful and the sooner I get rid of it again” (R12).
Experience with exacerbations	Q8: “But then the symptoms will not resolve themselves … you learn quite quickly that you should call immediately and eh (…) But at some point you learn that: ok, this is a cough so you have to watch out …” (R15).
	Q9: “At some point it will not pass and I’ve learned that if I feel something is coming up, I will call the general practitioner immediately” (R02).
	Q10: “I don’t want to let it get that far that I will get a pneumonia … a heavy pneumonia … I’ve had that before, and I was seriously shocked by that. I think it had also been bothering me for a couple of days then, and I waited too long … now I think, I should raise the alarm sooner” (R12).
Perceived social support	Q11: “Mum, you are short of breath … Oh am I? And then I’m wheezing without even noticing it …” (R08) (I: “But so then perhaps they recognize it sooner than you?”) R08: “Yes”.
	Q12: (“I: When you decide to call your HCP, what influences that decision? Does your environment influence that decision as well?”) “Well … very little … that’s just eh … purely my own feeling” (R15).
Heterogeneity of exacerbations	Q13: (“I: Do you feel like there is a difference between a gradual or sudden onset?”) “Both are also possible (…) Symptoms are so different, you can’t put your finger on it. That’s too bad right, such a shame …” (R13).
Habituation to symptoms	Q14: (Partner and patient speaking about perceived symptoms) Partner of R11: “He also turn bluish quickly (…) but I often don’t even notice because I’m so used to seeing that (…) but yeah, you experience it from the beginning you know? And see things slowly getting worse. And then it’s difficult … I think that’s also why you notice it less”. R11 adds: “Because the onset is gradually” (…) (R11).
	Q15: “Yeah, look, because you always have it … you learn to live with it. And when it gets worse, you know you have to warn, but because you are so used to it, you learn to live with it and you do everything with it” (R10).
Perceived influence on exacerbation course	Q16: (I: “And why do you think it is important to take action on time?”) “Well … I think it will heal faster or something … If I act sooner on it” (R06).
	Q17: (I: “And what do you do when you feel more breathless?”) “Well nothing. You can’t do anything” (R11).
Feelings of fear Being self- empowered	Q18: “At some point it’s mainly fear, and well, I start hyperventilating and then I can’t solve it anymore” (R02).
	Q19: “When I feel terrible and I call the general practitioner, like the last time that I felt a pneumonia was emerging, and the assistant tells me I can visit the general practitioner next week I say: I am sick know, I want to see the doctor right now” (R06).
	Q20: “So when I go to the general practitioner I know exactly what I want and I eh … try to direct the general practitioner in that direction. If there are plausible reasons not to do that that’s fine too, but before I go into the room I know for myself what I would like to accomplish” (R14).
	Q21: “And the assistants were not always that nice to me, they said the doctor doesn’t have time today. And then I said: ‘Yes, but’ … ‘No, no time today, come in on Friday’. But then I visited the doctor and he asked me why I didn’t come in earlier? Well …” (R13).
Having trust in HCP	Q22: “When something goes wrong I will call that lung nurse because the pulmonologist isn’t always available, you don’t get to talk to him on the phone directly, but she can quickly pass on the information so that communication is pretty good” (R15).
	Q23: “Actually, the most important thing is recognition, early recognition of a pneumonia and that someone listens to you at the moment you think something is wrong” (R13). (I: “Is that important to you, to take action?”) R13: “Yes, absolutely”.
Patient beliefs	Q24: (A patient mentioned that his doctor told him a few times to contact earlier and we asked the patient why the doctor gave this advice in the patients opinion. The patient answered:) “so you can have it treated sooner … and then maybe it will recover sooner as well … but, I am a bit stubborn” (R10).
	Q25: “Pushing through is what I learned back in the days (…) It is all mentality, if you feel mentally well, the rest will follow, because you feel responsible for the things that need to happen” (R10).
	Q26: “I am someone who thinks ‘then my doctor is wasting time for nothing’, so I wait until I am sick to death” (R13).
	Q27: “That is how we were raised. Back in the day, you could not be sick (…) It is very hard to break that habit when you were raised like that (…)” (R08).
Being ambivalent toward treatment	Q28: “You are not looking forward to going to the hospital. Although I actually know in advance that it will happen anyway” (R11).
	Q29: “Well, that you think: I would not call yet. I will wait a while (…) Prednisolone is an unpleasant medicine (…) I would rather take nothing but well … it is a necessary evil I say” (R15).

Abbreviations: HCP, health care provider; R, respondent; I, Interviewer; Q, quote.

Table S1 Topic list

Topics	Specifications	Questions (examples)
Perceived symptoms of COPD	Experience of COPD in daily life	Standard opening question: How do you experience having a lung disease in your daily life?
	Course of the condition	Could you tell me about the course of your condition so far?
	Day-to-day variations in symptoms	How do you experience day-to-day variations in symptoms?
Perceptions toward exacerbations	Recall of an exacerbation	Can you remember a period of increased symptoms (for which prednisolone and/or antibiotics were indicated) and can you describe your experience of this period?
	Definition of an exacerbation	Which name does your health care professional give to this period of increased symptoms?
	Experience of an exacerbation	How do you experience this period of increased symptoms?
	Recognition	How do you recognize feeling worse than normal? Which symptoms do you experience indicating the start of an exacerbation?
	Taking action	What do you do when you experience an increase in symptoms? Why?
	I would like to talk with you about the specific period of increased symptoms. Please remember a recent period of an exacerbation.
During an exacerbation	Performed actions	Which actions did you perform to feel better? Why?
	Wish for change	When you remember this period, are there any actions that you would change in case of a future exacerbation?
	Patients’ needs	Who, or what, could help you to perform certain actions at a future exacerbation?
Perceptions toward own role	Cause of an exacerbation	What do you think that causes an exacerbation?
	Own influence on exacerbation course	Do you think you can influence the course of an exacerbation yourself? And how?
	Importance of own actions	What is in your opinion the importance of early recognition of an exacerbation and taking actions yourself?
After an exacerbation	Performed actions	Which actions did you perform after an exacerbation? Why? What was important for you in this period?
Self-management in stable phase	Performed actions	When you feel relatively stable over a period, which actions do you perform to manage your condition? Why?
	Confidence in self-management toward future exacerbations	Do you feel confident in managing a future exacerbation?
Additional questions regarding previous topics	Advice from health care professional	Which advice did you receive from your health care professional?
		Do you have anything to add to the questions I have asked?

Global Initiative for Chronic Obstructive Lung Disease (GOLD)Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Pulmonary Disease [updated 2016] Available from: http://goldcopd.org/global-strategy-diagnosis-management-prevention-copd-2016/Accessed February 2, 2016

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