There were 18 patient participants and 18 doctors, which comprised of 3 respiratory physicians and 15 primary care doctors. All patient participants were males and ex-smokers with their age ranged from 52 years to 89 years (mean: 72.3 years). Among the patient participants, there was 44.4% Chinese, 38.9% Malays and 16.7% Indians; 44.4% had primary school education and another 44.4% had secondary school education. The mean value of the FEV1/FVC for participants on treatment was 59% (SD: 12.8%).
For the doctor participants, there was 38.9% Malays, 27.8% Indians, 22.2% Chinese and 11.1% other Asian ethnic groups. A total of 13 (72.2%) doctor participants were females. The experience in managing COPD patients ranged from 7 to 35 years (mean: 16.8 years).
The themes that emerged were similar in both the patient and doctor groups. There were three main themes: a) knowledge and awareness of COPD, b) psychosocial and physical impact of COPD and c) the utility of self-management.
Knowledge and awareness of COPD
Terminology was identified as an important issue. Patient participants were not familiar with the term chronic obstructive pulmonary disease or COPD. The term ‘asthma’ was used synonymously with COPD by both patients and doctors. One of the patients used the term ‘asthma’ throughout the focus group discussion to refer to his disease. He recounted how the doctor called him an ‘asthmatic’ during an exacerbation.
“They admitted me for one day; they checked and tested me up. They said you have asthma.”
Another patient found it difficult to remember what COPD stands for.
“Too long, I don’t know, I can’t remember.”
Doctors also acknowledged the difficulty with the term COPD and the misuse of asthma by both patients and doctors. The labelling of patients with COPD as being ‘asthmatic’ led to difficulties in improving patient knowledge and treatment. COPD was seen as a complex term and patients’ understanding of COPD is poorer compared to other conditions such as diabetes and hypertension. A doctor commented that the term “asthma” was used because it was more familiar to patients.
“I think it is not so common like diabetes, hypertension; you ask anybody, they know, but COPD very few and then, you know they don’t know what it means, what are the complications, many they don’t know, they are not well educated.”
“We may use the English word to say, we have to say 4 letters, C, O, P, D, whereas when you say asthma, they know it’s asthma already, even the non-English speaker, they know asthma, what it is, but when you want to say the word C, O, P, D, err.. you use the word ‘breathlessness’ or whatever, it’s just a description of symptoms, you cannot convey to them this is another disease. How very long - chronic, obstructive…because the word used is not a layman term, asthma is very easy for them.”
“And a lot of people, they feel that COPD is …“oh, I’m having asthma”, and then “why don’t you just give medication for asthma?”
“A lot of them, they don’t even know what is COPD. If symptoms are mainly breathlessness, then it’s ‘asthma’.”
Knowledge of disease
All patient participants were smokers. Patients generally had poor knowledge of the aetiology of the disease prior to being diagnosed. None was aware that smoking causes COPD. However, most were aware that smoking causes lung cancer.
“I know smoking is bad – I thought it caused cancer, although I never heard of COPD….Cancer, cancer, cancer, that’s all I know.”
Patients commented on the lack of patient information and education regarding COPD. The majority of their information on COPD was obtained from their doctor. Other information sources quoted were the internet, media, books and family members.
“Yes, I know very little about COPD, because when you see the doctor in-charge, they just tick-tick-tick, jot and tick. And I read the pamphlets, what those inhalers are for but there is very little.”
Self-management knowledge was generally poor.
“Don’t know how to do it, we don’t know. The thing is, we don’t know how to do it.”
“I don’t know, I’m better consult the doctor. Scared something wrong…”
Most patients referred to their inhaler by the colours (purple for prophylactic medication and blue for the bronchodilator). Only two could name the medication used. Most patients were unaware of the need for influenza and pneumococcal vaccination. Doctors also agreed that patients had poor knowledge about their disease or its management. There was even one patient who believed that his COPD would get better with time.
“I hope the doctor gives good medication to cure our disease. I feel that it may take four to five years for the COPD to disappear. I have only had the disease for one year.”
Psychosocial and physical impact of COPD
Most patients experienced difficulties in their psychosocial and physical functions which affected their lifestyle.
Breathlessness was associated with a negative psychosocial impact. Patients were fearful at being left alone. They were worried that help could not arrive in time. One of the participants mentioned that he felt as if he might die during an attack.
“I am afraid to stay at home alone. If anything happens, nobody can help me. I am afraid that I will be ‘out-of-order’ (might die).”
Some participants experienced a loss of intimacy. One patient expressed difficulty in performing sexual intercourse. A few participants slept separately from their partner because their partner wanted to have the air conditioner or fan on through the night.
“The problem is my wife, she wants the air-conditioning on. So I go to sleep in a different room.”
Others experienced loss of social interaction and bonding. Their breathlessness limited their participation in family gatherings. Some avoided crowded places as they believed this would aggravate their condition. One patient felt that he needed air to breathe if another person is at close proximity to him.
“Even someone come near me, I’ll push him. Because no air to breathe. I find that, if you come near me, I don’t have air to breathe, you know. So, I push my wife away.”
The cough was also viewed by family member as contagious.
“Especially smaller children - we don’t get too near them nowadays. Sometimes the parent would say ‘Oh! The cough may be from you! …Contagious. Don’t get near them.’ Yes, change lifestyle like we have to have a separate cup set - don’t eat together.”
Patients reported experiencing more stress and being emotional. Some felt the disease were self-inflicted and expressed resignation at their fate.
“We are the ones that are bad. We do not want to stop smoking – nobody’s fault but our own.”
“Because of our smoking, we feel regret. But what can we do? We have already smoked so what can we do.”
Some doctors talked about how patients do not express their psychosocial problems. But others spoke about how patients were not coping and how disease progression and symptoms led to frustration.
“The main thing usually, he would present with clinical, the emotional part sometimes are not really expressed, because, sometimes we don’t have time to explore.”
“I must say that, actually, they are not coping, they are crying for help but they don’t know how to ask for help.”
“Because the COPD is not controlled, then the hypertension and also heart disease keep on happening, so, this patient got frustrated.”
Physical function was reported to be severely limited by breathlessness. This included activities of daily living such as talking, eating and ambulating. Many patients limited the amount of food eaten as large meals made them feel breathless. Patients expressed feelings of loss of independence and helplessness resulting in the need for help by caregivers.
“We have to limit our food consumption. If we are too full, it affects our breathing and causes difficulty moving about.”
“Now the situation is different, I have difficulty bathing. I cannot scoop the water, I cannot apply the soap. I feel suffocated, like dying. I do not lock my bathroom door as I am afraid that nobody can help me. I cannot dry myself with the towel. It is tiring.”
“There is one thing which I regret, I cannot go travelling. I cannot go anywhere as I cannot walk long distances. If my wife is very good and goes to survey first to see if there is a wheelchair, then I’ll go.”
Patients also practiced food restrictions. Many believed that cold beverages and certain fruits aggravated their COPD. Doctors noted that some patients ate honey, ginger or lime to help with their symptoms.
“Cannot eat watermelon. We will be breathless. The white watermelon, I avoid. Iced water, cannot take.”
“Some of them, they do use home remedies, traditional like honey; honey and lime and warm water. Some use ginger to help with the cough and all that.”
Accessing healthcare was difficult for many patients. The majority had difficulty reaching the clinic from the car park. Most preferred to take a taxi that could drop them as near as possible to their intended location. One participant proposed that patients with COPD should be given a permit to enable them to use the disabled parking lot.
“Like the disabled, if we can have facilities, for old people, because the other day, I had to come to Emergency, asthma attack. I had to park my car the other block, the other side, walking down, hot sun, I nearly fainted.”
Most participants coped by breaking a physical activity into small successive steps with rest periods in between each task. This impaired their ability to venture on holidays or even to go shopping. The physical impact leads to frustration towards the illness.
“Because I am slow, they walk faster. So, I have to use a wheel chair, right? But my leg is not broken. I only look well but they don’t know that I am half-dead.”
The utility of self-management
Most of the patients were not confident in self-managing their illness. Only one patient felt confident enough to adjust his own medications. There was a preference for a more passive role with doctors directing their care.
“It is the doctor’s duty. We are not in the medical field - we wouldn’t know.”
“We cannot depend on ourselves. We need someone to treat and give us the medication. That is our routine.”
Some doctors felt that patients are not able to self-manage. Others felt that it might be possible for patients to adjust inhaler dosage but not oral steroids or antibiotics. They reasoned that this was due to patients’ poor knowledge about their disease. One doctor did not support self-management because she believed that patients should come for follow-up to be properly assessed.
“At least when they come to us, we can assess them and see how severe is the disease.”
“I don’t think that our Asian patients are like that from Western countries, so we cannot expect them to self-care. They might abuse antibiotics.”
“They don’t come to that level yet, self-management, I think, that one, your level of education, motivation must be very high.”
An additional theme that arose from the doctors’ focus group discussions were the challenges in managing patients with COPD. These were with regards to the limited resources in the primary care clinics such as the limited access to diagnostic equipment, more expensive medications, health educational material and rehabilitation services.
“In our setting, we don’t have the spirometry facilities. So, most of the time, we will diagnose by history, risk factor and also clinical symptom mainly, but for those patient when not sure about asthma or COPD, then, we can send for spirometry in nearby hospital.”
“At the moment, I think for COPD, we don’t really have COPD pamphlet or leaflet.”
“I don’t think our medication is enough especially in health clinics, where our resources are very limited. Most of them, we just give them whatever we have which is inadequate for theirtreatment actually. But when we refer to secondary care and they don’t want to go, then it’s very difficult.”