Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors

Abstract

BackgroundChronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD.MethodsWe conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach.ResultsThe themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word ‘asthma’ was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care.ConclusionsIn conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit.

Detailed Characterization of Hospitalized COPD Patients in Relation to Combined COPD Assessment by GOLD

“…The prevalence of ACOS appears low at 6% compared to the estimated prevalence between 15 to 55% globally [30,31]. A poor knowledge of COPD among our COPD patients is consistent with the other Malaysian study [6] and reflects an important lack of public and patient education of COPD in Malaysia. There were a significant proportion of anxiety and depression reported in our cohort especially Group D patients.…”

“…A qualitative study of local COPD patients and doctors showed a consistent theme of poor patient knowledge, compromised psycho-social and physical functioning, and lacking confidence to self-manage [6]. Although national guideline for COPD management has been available since 1999, prescribing of long-acting beta-agonist and enrolment onto pulmonary rehabilitation programme remained low [7].…”

Conceptions of everyday life among people living alone with chronic obstructive pulmonary disease

“…COPD School led by a nurse should be obligatory to provide to each patient afflicted with COPD. Wong [43] found that patients' knowledge about COPD was poor, and they were not confident with self-management. Nurse-led COPD School in cooperation with the patient to support them and educate them about their disease should be even more important for persons living alone to provide them with a chance to handle and to improve their situation.…”

Maintaining a Distinction Between Possible and Impossible Topics of Conversation in the Outpatient Respiratory Medical Clinic

“…These findings support other studies suggesting an effort to relieve the suffering and to support the patients’ efforts to live their best possible everyday life (Bisgaard, Backer, Lange, Lykkegaard, & Søgaard, 2013; Fiscella & Epstein, 2009). The findings also suggest a lack of experience in being able to accommodate, tolerate, and relate to the suffering of the patients during counseling (Frank, 1995; Wong et al, 2014). Likewise, HCPs used the time frames and the mandatory conversation subjects as an opportunity to avoid the discomfort of existential conversation topics.…”

“…This reflects a moral–philosophical approach in which the patient is regarded as unique and the multidimensionality of the human experience of illness is recognized by building on multiple understandings of the patient’s situation (Dubbin, Chang, & Shim, 2013; Epstein, Fiscella, Lesser, & Stange, 2010). Nonetheless, several studies point to the lack of a patient-oriented approach in the patient-HCP interaction (Disler et al, 2014; Wong et al, 2014). A patient-centered approach is described as having the potential to be instrumental in facilitating patients’ coping, managing of self-care, and optimizing quality of life.…”