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

Figures & data

Table 1 Day-wise tasks assigned to patients in the Online Communities

Task	Theme	Task objectives
1	From first symptoms to diagnosis	Identify initial symptoms, who gave the diagnosis and when, initial concerns and reactions to diagnosis To identify spontaneous associations with COPD
2	Living with COPD	To identify the physical and psychological elements of living with COPD To understand the biggest impacts that COPD has on patients’ lives and the strategies they put in place to best cope with these
3	Symptoms of COPD	To understand the impact of cough, mucous secretion and other signs (sleeplessness, urinary incontinence, etc.) on patients’ quality of life and emotional well-being To identify unmet needs in coping with symptoms
4	Your ideal COPD medication	To understand patients’ treatment goals; how they would determine “success” of a treatment, what measures they would refer to To identify the unmet needs in relation to current available treatment options
5	Reducing the impact of COPD on the patient’s life	To explore patient’s involvement with digital health services currently available To identify unmet needs in relation to treatment support services To explore new ways of improving patients’ quality of life

Table 2 Screening criteria for participation in the Online Communities

Criteria
Age: a mix of ages in the UK, but in the USA, patients were primarily aged >50 years
A diagnosis of COPD at least 6 months prior to recruitment
Had experienced persistent coughing or excessive mucus production
In the USA: a majority of patients from Medicare
Have access to a mobile phone or computer for study participation

Table 3 Patient responses regarding the impact of symptoms on quality of life in the Online Communities

Discussion theme	Emergent sub-themes	Representative verbatim responses from patients
From first symptoms to diagnosis	Little or no awareness of COPD or its symptoms pre-diagnosis amongst patients Lack of a prompt and proactive approach to diagnosis at the primary care level	“I had never heard of COPD until I was diagnosed. I wasn’t even a heavy smoker so I was in denial for almost a year.” UK11 “It took a while to convince different medical professionals that I actually have COPD. I couldn’t convince my GP here to go and test my lungs; on one visit to Belgrade I went to the private clinic and saw a pulmonologist, who took all kind of tests and diagnosed COPD. I took all documentation to my GP who said that I don’t have COPD, maybe mild asthma. Six months ago I became very breathless with tightness in my chest and the ambulance took me to hospital where they diagnosed COPD.” UK01 “This affects me on a daily basis as I am continually tired, the simplest of tasks take ages to complete and leave me exhausted and breathless and depressed as I fear losing my independence.” UK13 “COPD prevents me from doing a lot of what I once enjoyed, including singing, it can be embarrassing at times when you have to explain why you can’t do certain things.” UK09 “Nights are the worst, wheezing, rattling coughing, I dread lying down and feel very guilty about keeping my husband awake.” UK09 “Early morning, back of throat totally clogged up with mucus, I start the process of ridding the mucus by retching hacking and it is so exhausting this takes around 45 mins to 2 hrs.” UK03 “First off I am not the person I was for 48 years. She is gone. I used to be so active, full of life. Was always up for anything. Loved my job, my family. Took care of everyone and loved it. I’m not her anymore, I am a different person. I have to tell you, I silently mourn the old person, she is never coming back, things from here on are all downhill. I try and keep a positive attitude, but come on who am I kidding. When I wake up every morning and my feet touch the ground I thank the Lord above for another day.” US01 “I don’t even want to drive anymore I feel so weak.” US01 “The cost of inhalers is astronomical. Trying different ones is quite costly. There is also a COPD rehab that is done at the hospital but it costs big time.” US06
Symptoms of COPD	Breathlessness and cough are strongly associated with COPD Coughing can bring on embarrassing incontinence	“Not being able to breath, and unable to do physical activity. The worst part, your mind tells you that you can do it, because you’ve been doing it your whole life. Your body shuts the thinking down real quick. Leaving me very frustrated!” US05 “My breathing isn’t good … sleep is really bad coughing all the time.” UK06

Table 4 Patient responses regarding urinary incontinence caused by cough

Emergent themes regarding the impact of urinary incontinence

Representative verbatim responses from the patients

Urinary incontinence brings embarrassment to patients, especially in public Patients’ close and intimate relationships suffer Patients delay use of pads due to associated costs Physicians are not very helpful

“At least once per month I cough and wet myself. I don’t use pads but do if I have to go out.” UK13 “My incontinence forced me to avoid intimacy.” UK11 “Yes I did speak to doctor [he said:] “if it gets to the point where you can’t cough at all without wetting yourself come back & we’ll see if you can get them on a script.” UK08 “It was more of a problem 2 years ago but when I did talk to my pulmonologist about he just kind of blew me off by just saying ummm. I was trying to find out if this was normal, not normal but goes with COPD.” US09

Table 5 Patient responses regarding COPD management in the Online Communities

Discussion theme	Emergent sub-themes	Representative verbatim responses from the patients
Your ideal COPD medication	Patients wish to get their “previous self” back Any improvement in frequency, intensity and/or duration of cough and mucus would be an extremely valuable improvement to the functionality of a COPD patient Patients think physicians need to be better educated about the impact of cough and mucus Patients are on multiple medications and still unable to achieve treatment goals Patients trial and error different solutions that may help Strategies are driven mainly by intuition and recommendations by other patients Avoiding risk factors and “stay healthy” are the main preventative strategies	“It would feel like freedom.” US11 “Less loneliness, less panic, less fear, nicer skin and more sleep and rest, positivity.” UK12 “My Doctor has hardly given me any information on the condition. I do see the practice nurse every year for a check-up, but in the time I have had COPD I have seen 4 different nurses, and each one has their own ideas on how to treat COPD. This is very frustrating for me. So I have picked a plan that works for me, out of the choice given to me on net forums & discussions with the nurses. Doctors must be more aware of our symptoms so they can diagnose you early and not wait until you literally can’t breathe.” US04 “My heart is covered by my tablets, which keep it under control, together with my blood pressure tablets it all seems to be working fine. The COPD inhalers do a little towards the symptoms; however, they still are not all that effective.” UK04 “It is very difficult to manage it effectively; however, I have found that a Vicks vapor-rub in hot water helps a lot, as does honey and lemon drink.” UK04 “Weather affects me so much, probably all of us. Never know what kind of air there will be. Hot is horrible. Cold is horrible. Humid is even worse. I never commit myself to anything. Most of my friends and family get it that I can’t know until the day because I never know what kind of breathing day will be.” US09
Reducing the impact of COPD on the patient’s life	Patients use technology to help monitor their condition, and learn from others Patients and carers need more information and support	“I use an oximeter, Health app on my phone that has a million things on it. But I just use the pulse rate, heart rate and stress level. I have a blood pressure cuff too.” US09 “I think I would favor a wearable device that tracked your condition, and could be downloaded to my PC, so that I could monitor the changes, and over time, perhaps be able to predict a chest infection.” UK04 “I agree doctors don’t have time to give you a listening ear, so now for me I can go online and find answers myself through organizations like BLF and online forums.” UK13 “This is what really annoys me. Since being diagnosed with COPD you would think your GP would have you in on a regular basis. No I’ve been left to get on with it. I have an appointment to see the nurse on the 20th of this month; who arranged it? ME! If we didn’t have the sites like BLF & ASTHMA UK to get info from, I really do dread to think about it.” UK08

Figure 1 Consequences of cough and mucus in COPD patients.