Reluctance to seek care is a common response to exacerbations in patients with COPD. Excessive self-reliance, not wanting to bother healthcare professionals and waiting for a tipping point when the exacerbation became more severe were reasons cited by COPD patients for not seeking medical care sooner, in a qualitative study from the USA.

Participants for this study were selected from a prospective observational study of 410 patients attending Veterans Administration (VA) clinics with COPD. All had had a spirometric diagnosis of COPD and at least one treated exacerbation in the past 12 months. 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 hours.

The study included patients who had exacerbations that were untreated; exacerbations with worsening symptoms that persisted for more than 7 days and less than 6 weeks and were rated as moderately to extremely serious using a symptom questionnaire; those treated with oral corticosteroids and/or antibiotics in the outpatient setting; those treated in an urgent care or emergency department (ED) setting; and those hospitalised.

A total of 60 participants (97% men), mean age 69 years, were interviewed. Of these, 15 were untreated, 15 treated in an outpatient setting, 16 in the ED or urgent care clinic, and 14 hospitalised.

Structured interviews were conducted by trained researchers. Participants were asked to describe the course of their recent exacerbation including symptoms, their emotional and cognitive responses, coping strategies, symptom management, care-seeking behaviour, treatment received, involvement of others (such as caregivers, family, and friends), and comparison with past exacerbations and care-seeking behaviour.

Four primary themes were identified: access and attitudinal barriers contribute to reluctance to seek care; waiting is a typical response to new exacerbations; transitioning from waiting to care-seeking: the tipping point; and learning from, and avoiding, worse outcomes.

Reluctance to seek care

Attitudinal barriers contributing to reluctance to seek care included self-reliance and not wanting to bother or burden medical services. The ‘hassle’ or inconvenience of seeking care was also commonly cited as a motivation for delaying seeking care. There was a heightened reluctance to seek care in emergency settings. Some believed that only ‘true emergencies’ should be seen there, others cited time waiting for treatment or travelling distance as barriers. However, some respondents indicated that referral by their primary care physician to the ED would make them bypass primary care in future.

Waiting to seek care

Waiting before seeking care was a typical response to new exacerbations. Patients recognised the early symptoms of an exacerbation. However, all participants described using self-management first such as OTC or prescribed medicines to hand, increasing home oxygen levels and increasing use of inhalers. Others felt that they needed to ‘wait it out’ to see if their symptoms would subside. Patients tended to overestimate the chances that the symptoms would improve. Many wanted to wait till their symptoms felt bad enough to warrant treatment but not serious enough to result in a crisis.

Tipping point

The tipping point was when the patient decided to seek help. Those who did not seek care never reached such a point. For the others the tipping point tended to be when they had exhausted their self-management options, symptoms became more severe or more worrisome, or they were pressured by family members. Most said they would wait for around a week before seeking care.

Learning from past experiences

Many reported consistently delaying seeking care during exacerbations although others said their behaviour had evolved over time. Previous delay had resulted in hospitalisation for some patients and they now wished to ‘nip it in the bud’. Other patients described being encouraged to seek care earlier by clinical staff.

The study authors state: ‘It is important to incorporate individuals’ experiences with prior exacerbations to reduce barriers to seeking care sooner. Our study suggests that strategies to address attitudinal barriers such as self-reliance and wanting to avoid being a burden to others may be needed.’

They add that: ‘Follow-up visits after hospitalisations and ED visits may provide opportunities to help individuals improve self-management skills and care-seeking behaviours.’

Dr Peter Saul