<p>Impact of cough and mucus on COPD patients: primary insights from an exploratory study with an Online Patient Community</p>

Abstract

Background: Qualitative research provides real-life information on patients’ condition and facilitates informed design of future clinical studies. Objective: We used Online Communities as a qualitative research tool to evaluate the effect of cough and mucus on COPD patients. Methods: Two 2-week Online Communities were run in parallel in the UK and in the USA, including COPD patients with persistent cough and excessive mucus. Patients anonymously posted their responses to pre-assigned tasks, supervised and guided by a trained moderator. Five themes around the impact of cough and mucus were explored with new questions posted every 2–3 days. On the final day, high-level conclusions were shared with patients for feedback. Data were analyzed following the principles of grounded theory. Results: Twenty COPD patients (UK, n=10; USA, n=10) participated in the Online Communities. We found that cough and mucus disrupted COPD patients’ lives at functional, emotional, social and economic levels. Patients created daily rituals and adjusted their lifestyle to cope with the impact of these symptoms. Patients identified themselves with our conclusions and saw the Online Community as an effective forum to share their experiences. Conclusion: Findings of our study add to the body of evidence on the negative impact of COPD symptoms and unmet needs of these patients.

Gathering Structured Patient Insight to Drive the PRO Strategy in COPD: Patient-Centric Drug Development from Theory to Practice

“…The findings from the SML study showed that cough and mucus production were the symptoms affecting quality of sleep, work, and daily activities irrespective of severity of disease [6]. These findings also revealed that relief from cough, mucus production, and shortness of breath would be the most desirable aspects of disease management from a patient perspective (Table 2) [6,7].…”

“…The detailed findings from the qualitative online insight gathering approaches (SML and OBB studies) in COPD have been reported in their respective full publications [6,7]. In short, the results of these studies indicated that besides dyspnoea and exacerbations, cough and mucus production are very important aspects of the disease for COPD patients.…”

“…Subsequently we conducted an OBB study to further validate and explore the patient insights revealed from SML in greater detail with a qualitative approach. Twenty COPD patients (UK, n = 10; USA, n = 10) participated in the OBB that ran for over 2 weeks [7]. Being an asynchronous, moderated, closed online community platform (similar to a private chat room) for qualitative patient research, an OBB allows participants to answer predefined questions in a comprehensive manner [12].…”

“…These cough and mucus symptoms also result in the need for continuous breaks during the daytime making most patients exhausted. The symptoms also manifest during the night (phlegm accumulates when lying down and introduces sense of suffocation, together with the cough causing sleep disturbance) [7]. Another important observation from the OBB study was that patients with COPD experience urinary incontinence associated with cough but tend to be uncomfortable talking openly about such sensitive symptoms (hence this was not a prominent complaint in social media posts); in fact, two-third of the study participants from OBB who suffered from chronic cough acknowledged incontinence to be a significant problem [6,7].…”

“…The symptoms also manifest during the night (phlegm accumulates when lying down and introduces sense of suffocation, together with the cough causing sleep disturbance) [7]. Another important observation from the OBB study was that patients with COPD experience urinary incontinence associated with cough but tend to be uncomfortable talking openly about such sensitive symptoms (hence this was not a prominent complaint in social media posts); in fact, two-third of the study participants from OBB who suffered from chronic cough acknowledged incontinence to be a significant problem [6,7]. To build further on the significance and relative importance of these symptoms to patients (cough and mucus secretion and consequences thereof such as sleep disturbance, fatigue, incontinence) compared with the more commonly measured end points (lung capacity or breathlessness; exacerbations/hospitalizations) in COPD, there was a need to evaluate them in a quantitative patient preference study.…”