Care-seeking and delay of care during COPD exacerbations.

Patients who receive earlier treatment for acute exacerbations of chronic obstructive pulmonary disease (COPD) have a better prognosis, including earlier symptom resolution and reduced risk of future emergency-department visits (ED) or hospitalizations. However, many patients delay seeking care or do not report worsening symptoms to their healthcare provider. In this study, we aimed to understand how patients perceived their breathing symptoms and identify factors that led to seeking or delaying care for an acute exacerbation of COPD. We conducted semistructured interviews with 60 individuals following a recent COPD exacerbation. Participants were identified from a larger study of outpatients with COPD by purposive sampling by exacerbation type: 15 untreated, 15 treated with prednisone and/or antibiotics in the outpatient setting, 16 treated in an urgent care or ED setting, and 14 hospitalized. Data were analyzed using inductive content analysis. Participants were primarily male (97%) with a mean age of 69.1 ± 6.9 years, mean FEV1 1.42 (±0.63), and mean mMRC dyspnea of 2.7 (±1.1). We identified 4 primary themes: (i) access and attitudinal barriers contribute to reluctance to seek care, (ii) waiting is a typical response to new exacerbations, (iii) transitioning from waiting to care-seeking: the tipping point, and (iv) learning from and avoiding worse outcomes. Interventions to encourage earlier care-seeking for COPD exacerbations should consider individuals' existing self-management approaches, address attitudinal barriers to seeking care, and consider health-system changes to increase access to non-emergent outpatient treatment for exacerbations.Clinical Trial Registration NCT02725294.

Introduction

Persons with chronic obstructive pulmonary disease (COPD) frequently experience acute exacerbations that are associated with decreased quality of life[1] and can lead to emergency-department (ED) visits and hospitalizations[2]. The economic impact of severe exacerbations is significant. In the United States in 2010 there were an estimated 1.5 million ED visits and 699,000 COPD hospitalizations with a mean cost of $8,228 per hospitalization[3,4].

Patients with exacerbations may require pharmacologic treatment, including bronchodilators, corticosteroids or antibiotics[5]. Earlier treatment can lead to more rapid symptom recovery and fewer ED visits and hospitalizations[1,6]. However, in one study, more than 70% of patients presenting to the ED with a COPD exacerbation waited more than 24 h before seeking care, thereby increasing the risk of hospitalization[6]. Moreover, an estimated 40% of patients do not report all their exacerbations to their healthcare providers, also increasing the risk of COPD hospitalization[1].

COPD self-management programs that include an action plan with prescriptions for home antibiotics and prednisone for treatment of exacerbations have been shown to improve quality of life and reduce hospitalizations[7,8]. In a randomized controlled trial of a COPD exercise program where all participants had a COPD action plan, those initiating prednisone and antibiotics within 3 days of new respiratory symptoms had more rapid resolution of symptoms, but no difference in healthcare utilization than those who delayed treatment[9]. However, this study found that even with home prescriptions, 60% delayed treatment[9]. In a different study, patients with an action plan delayed treatment by an average of 6–7 days[10]. Other approaches to identifying COPD exacerbations such as telemonitoring programs have not consistently reduced ED visits or hospitalizations for COPD[11]. Therefore, a better understanding of why some patients delay treatment may help to improve COPD self-management programs and to help develop more effective telemonitoring programs.

The reasons for not reporting worsening symptoms to the healthcare team or delaying care may be that patients do not recognize symptoms of exacerbations[12]. Additionally, the desire to avoid hospitalizations may be a key factor in choosing not to seek care[13,14]. Qualitative studies of patients in the United Kingdom, Denmark, and the Netherlands found that barriers to seeking care included reluctance to see the doctor, not wanting to bother the doctor, lack of continuity of care, not knowing when it is appropriate to call, and difficulty traveling to the clinic[12,15,16].

Given the potential benefits of early treatment during a COPD exacerbation, we utilized a qualitative descriptive design to understand how persons with COPD in a US health care system emotionally and cognitively perceived and managed their breathing symptoms, and the barriers and facilitators that led to seeking or delaying care for an acute exacerbation of COPD.

Methods

Participants in this qualitative study were identified from a prospective observational study of 410 outpatients with COPD enrolled in primary care at two Veterans Affairs (VA) Medical Centers. Participants had COPD confirmed by spirometry (FEV1/FVC < 0.70), ≥1 treated COPD exacerbation in the previous year, and were English-speaking. Nursing-home residents and those with a diagnosis of dementia or Alzheimer’s disease were excluded. Institutional review board approval was obtained at VA Puget Sound and Eastern Colorado VA and all participants provided written informed consent; standard ethical and research-governance procedures were followed. We adhered to the consolidated criteria for reporting qualitative research (COREQ) guidelines (Supplement 1)[17].

Participants were contacted every 2 weeks to screen for worsening COPD symptoms. Exacerbations were defined as new or worsening breathing symptoms that lasted more than 48 h[18,19]. Among the participants who experienced exacerbations during the study, we identified individuals eligible to participate in this qualitative study if they had exacerbations that met the following criteria: (i) untreated (did not seek care or take corticosteroids or antibiotics) exacerbations with worsening symptoms that persisted for ≥7 days and <6 weeks and were rated as moderately to extremely serious using the Response to Symptoms Questionnaire[20] modified for COPD; (ii) treated with oral corticosteroids and/or antibiotics in the outpatient setting; (iii) treated in an urgent care or ED setting; or (iv) hospitalized. During January 2017 through February 2018, we purposively sampled from all 4 exacerbation categories soon after the exacerbation ended. Individuals were invited to participate in a phone-based, semistructured qualitative interview. Recruitment was discontinued when saturation occurred, and no new concepts or themes related to the study aims were identified[21].

Data collection

Interviews conducted by trained qualitative researchers (JY and CS) were digitally recorded and transcribed (interview length 32–65 min, average 48 min). The interview guide started with broad, open-ended questions, followed by more specific questions and probes to elicit thorough, detailed descriptions of exacerbation episodes. The questions examined perceived need for care for a COPD exacerbation based on Leventhal’s Common Sense Model to understand how individuals responded both cognitively and emotionally to worsening breathing symptoms[22]. Participants were asked to describe the course of their recent exacerbation including symptoms, their emotional and cognitive responses, coping strategies, symptom management, care-seeking, treatment received, involvement of others (such as caregivers, family, and friends), and comparison to past exacerbations and care-seeking behaviors (see Supplement 2 for Interview Guide). Interviewers also created written field notes for each interview to capture contextual information, encourage interviewer reflection, and facilitate interviewer technique improvement[23].

Analysis

Data were analyzed using inductive content analysis, an approach in which themes are derived from the data through open coding, code grouping, categorization, and identifying patterns of meaning across the data[24,25]. Experienced qualitative analysts (CS and JY) closely reviewed all transcripts and created an initial code list based on meaning units identified in the data. The coding framework was refined through discussion between the analysts and larger research team and coding discrepancies were resolved through consensus building. All data were coded using Atlas.ti qualitative software (version 8) and sorted into categories based on similarities and differences within and across interviews and themes were identified based on patterns in the data.

Interview data were iteratively revisited to refine themes, ensure findings were grounded in the data, and validate the results[26]. The entire study team, which included clinicians from a variety of disciplines and health-service researchers with expertise in COPD, reviewed analytic results at multiple time points to finalize themes, confirm the validity and credibility of findings, and identify representative quotes.

Table 1

Demographics of interviewed participants.

	N = 60
	N or mean	% or SD
Demographics
Age	69.1	±6.9
Male gender	58	96.7
Race, Caucasian	47	78.3
Income >$20,000 per year	40	70.2
Currently employed	10	16.7
Education, college graduate	19	31.7
Live with others	43	71.7
Living as a couple	40	66.7
Dual Medicare and VA user	47	78.3
COPD severity
FEV1 (liters)	1.42	±0.63
FEV1 % predicted	43.6	±19.4
FEV1 % predicted by severity category
≥80% (Mild)	4	6.7
50-79% (Moderate)	16	26.7
30-49% (Severe)	25	41.7
0-29% (Very severe)	15	25.0
mMRC dyspnea scale	2.7	±1.1
Type of exacerbation treatment during the one-year follow-up period
≥1 Untreated	47	78.3
≥1 treated as outpatient	30	50.0
≥1 urgent care or ED	23	38.3
≥1 Hospital	22	36.7
COPD treatment
Chronic corticosteroid use, oral	7	11.7
Home oxygen therapy	31	51.7
Home nebulizer use	31	52.5
Pulmonary providera	38	63.3
At-home prescription for corticosteroids and/or antibiotics	14	23.3
Prior participation in a pulmonary rehabilitation program	16	26.7
Enrolled in the VA care coordination home telehealth program for COPD	3	5.0
Access to emergency care
Minutes to VA emergency department	62.7	38.7
Minutes to non-VA emergency department	15.9	9.4

aEither VA and/or non-VA pulmonary provider.

Table 2

Themes and corresponding exemplar quotes.

Quote #	Themes and quotes	Participant #	Type of exacerbation
Theme 1: Access and attitudinal barriers contribute to reluctance to seek care
	Attitudinal barriers to care
Q1	I don’t like asking anybody for anything…they’d take me I know, but I just hate asking them. I don’t involve anybody in it. There’s family here, but I don’t involve them. It’s my problem.	Pt 37	ED
Q2	I don’t want to trouble the paramedics…or the hospital…every time I have these things, there’s a feeling of guilt…putting people through this …going to the doctor, going to the hospital, having to call 911, putting my wife through it.	Pt 45	Untreated
	Practical barriers to accessing in-person care
Q3	It’s just a hassle - driving through traffic, the time it takes, paying for gas, missing work… I don’t go unless I absolutely have to.	Pt 7	ED
Q4	Yeah, just the inconvenience of going there…it’s not that I can’t go, there’s no one thing stopping me… I just don’t want to do it…it’s such a bother.	Pt 11	ED
	Heightened reluctance to seek care in ED settings, but few other options
Q5	The ER, that’s the place to go only if you are in real dire straits, you don’t go there if your breathing is just bad, only if you absolutely can’t get a breath…so you put it off if you can.	Pt 55	ED
Q6	I don’t like going to the doctor but I hate going to the ER…I try to keep out of there as long as I possibly can.	Pt 46	Untreated
Q7	First I called them up [Primary Care office] but they said it would be a couple weeks before I could see anyone…couldn’t wait that long with my breathing.	Pt 2	ED
Q8	Sure, if I could call up and see someone [in primary care], I would do that but that’s not how it works…you can’t get in to see someone when you need it. They just say to go to the ED. … I don’t even call them anymore.	Pt 20	Hospital
Theme 2: Waiting is a typical response to new exacerbations
Q9	I’ve been dealing with this so long…I always know when it’s getting started and something is coming on….always starts the same way…get tight in the chest, hard to take a deep breath.	Pt 49	Untreated
	“Trying everything first”
Q10	I can tell when something is coming on so I do everything…my inhalers, my oxygen, my medications and I try and slow down and rest. Everything I can do myself first [before seeking care].	Pt 38	Outpatient treatment
Q11	So I know what to do…I take my two inhalers, and if it still continues then I go up to the store and pick up some Claritin-D, some Sudafed, some Musinex…then after a while my breathing will open up and after a few days of those I’m a lot better. [LATER] Oh I’ve just figured out what works through trial and error…I’ve been dealing this this [COPD] long enough that I’ve just figured out what works for me.	Pt 42	Untreated
Q12	I have some medications my doctor gave me to use here when I need them [steroids and antibiotics]. I started on those after my breathing got bad and gunky…and I did all my other usual stuff like my inhalers. Then you wait and see what happens… You gotta give that stuff time to try and work it out.	Pt 23	Hospital
Q13	My doctor has given me things I can take if I need them [antibiotics] but I don’t like resorting to using them …don’t think it’s good to use them too much…don’t like how they make me feel and I don’t think it’s good for you.	Pt 33	Outpatient treatment
	“Waiting it Out”
Q14	I just do all my usual stuff and wait for it to pass… sometimes it gets better and sometimes it don’t.	Pt 3	ED
Q15	Because you always seem to hope that it’s just a cough or cold, and then it just keeps getting bad and then you have to go to the doctor. You want to think it will get better, but usually it doesn’t.	Pt 59	Outpatient treatment
	Waiting but not waiting too long
Q16	What happens is if I wait too long, if I fight it and try to do it with my own medications…then I have to go to the hospital…then I think I’ve waited too long. When I had to call the ambulance, I should’ve gone earlier.	Pt 14	Hospital
Q17	In my case, a lot of times I’d wait a week or two weeks before I’d go in. A lot of time I’d wait to the point where it’ll take forever to fix. If I hadn’t waited, if I’d gotten there sooner, it would’ve been fixed sooner and it wouldn’t have gotten so bad.	Pt 18	Hospital
Theme 3: Transitioning from waiting to care-seeking: The tipping point
Q18	This time it didn’t get so bad. At about day seven, just when I was thinking I might need to head to the ED, I started breathing a little better. … Wasn’t nothing I did, just got lucky this time I guess.	Pt 53	Untreated
Q19	I always wait a week, that’s the time I give it each time my breathing gets bad. Then if it’s not better at a week I call the doctor.	Pt 40	Untreated
Q20	If what I’m doing just is not working and I’m using my inhalers here like crazy…and if it’s not working and I have nothing left to try, then I better get going.	Pt 1	ED
Q21	Yeah, when I couldn’t catch my breath even when I laid still…when I couldn’t even walk across the room or get to the bathroom, I decided this is something I couldn’t handle by myself. So I went to the ER.	Pt 10	ED
Q22	I can usually tell by what I’m coughing up, like a rainbow. And if it gets to be a certain color, I call my doctors.	Pt 28	Outpatient treatment
Q23	I turned my machine all the way up and still couldn’t breathe…my rescue inhaler didn’t work. I was gasping for air and got all panicky which made it worse, so I ended up taking an ambulance to the hospital.	Pt 19	Hospital
Q24	I always give it about a week to get better on its own. But then I got tired of not being able to breathe and thought I’d better do something about this.	Pt 38	Outpatient treatment
Q25	Well honestly, I only called the doctor because she [wife] was on my case so bad to get seen. So I called and ended up going in to Urgent Care that night.	Pt 12	ED
Q26	My wife was really fed up with my bad breathing…I didn’t want to go to the ER but she said ‘that’s enough of that’ and called 911.	Pt 4	ED
Theme 4: Learning from and avoiding worse outcomes
Q27	Well I’ve played that waiting game before and ended up in the hospital….this time I saw it coming on and went on in to get checked out.	Pt 9	ED
Q28	I didn’t hesitate [to seek care] this time. I don’t mess around with my symptoms and hope they will go away like I used to. Now I want to nip it in the bud, go in there earlier and take care of things so I don’t end up so sick…don’t need another case of pneumonia.	Pt 34	Outpatient treatment
	Clinician role in encouraging care seeking
Q29	My doctor [pulmonologist] got on me about it…told me not to wait so long. Don’t try to get in and see her, just go into the ER if I’m having any problems.	Pt 39	Outpatient treatment
Q30	[PCP] told me I was doing damage to myself by not getting in there sooner and I might be hurting my lungs or doing other bad stuff to my body. He said as soon as my breathing gets bad I’d better get myself to the ER…now I try and make myself get in there sooner.	Pt 2	ED
Q31	I always call to see if I can get into my PCP and I’ll wait to see her if I can… sometimes can’t get in and then I end up waiting, you know, and then end up at the ER anyway…if only I could get in to see her then I wouldn’t do all that waiting and wouldn’t have to go there [ER]…that’s what I want to happen.	Pt 54	ED