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Table 4 Illustrative quotes related to patient needs and benefits and barriers of using mHealth for self-management

From: Perceptions of patients with chronic obstructive pulmonary disease and their health care providers towards using mHealth for self-management of exacerbations: a qualitative study

Theme Quote
Patient needs toward self-management support
Being heard by a HCP Q1 P02: “The doctor said ‘There’s nothing I can do for you because you have the flue’ […} as result that I became really ill. […] Yes, I always get really emotional when I’m not being heard. It’s really important that you are being heard.”
H06: “Because for the patient, I believe being heard is what’s needed the most.”
Adequate support from a HCP Q2 P04: “It was so bad that I called the pulmonary nurse at the hospital on Friday. She said ‘Yes, Madam, the flue is going around, so just take some extra inhalations’ and that’s how I entered my weekend. I can’t believe I agreed with it. Then in the afternoon I called my own pulmonary nurse, she’s always really helpful. She immediately sent the prescription for antibiotics to the pharmacy, but it was actually too late and I ended up in hospital.”
H05: “Patients really appreciate a little extra support. If you tell them that it’s all right to call and ask for help, they will do that much more easily.”
Tools to substantiate health status Q3 P11: “When it’s really bad you can feel it. But most of the time it just grows consistently. It would be really nice if earlier on I would feel it, so I can tell myself to be careful. Then it would be possible to adjust my behavior, my energy and based on those two, my medication.”
Information on actions Q4 P01: “At the time, I thought it wasn’t too bad. Well it actually is bad nowadays. Back then I should have known what to do. […] I wish I would have had the information at that time about how I could recognize that I am not doing well […] how I can manage a threating attack.”
Social support Q5 P12: “I am always late as I just explained. So it’s usually my husband who tells me ‘If you don’t go now, I will take care of it’. You know, like, then I will make the call.”
Elimination of barriers in health care system Q6 P09: “The discussion I have with a doctors assistant like: ‘You need to come in’, and I tell them that I’m too short of breath and they tell me: ‘We understand, but we can’t just give you medication, so you have to come in and see the doctor.’ That’s the point that I give up and tell them to ‘never mind’ and I just hang up the phone. […] Well it’s just not possible to directly see a pulmonologist, is it?”
Benefits of using mHealth for self-management
Contributes to awareness of symptom deterioration Q7 P07: “I would be willing to fill out a questionnaire but only so that I can get more insight into what it actually is that I have. […] It would be a nice tool to help you point out what you feel. It would be like ‘I feel like this’ but also ‘this could be the source of your problem’ so what you should do is take some extra puffs, something like that.”
H02: “Early detection of an exacerbation, that the app could help the patients find out if that is what is happing. That it would be possible for the patients to insert information on symptoms into the app every time they experience upcoming symptoms. So that the app can be supportive in detecting an exacerbation.”
Demonstrate and underpin current health status Q8 P10: “It would help me in convincing the general practitioner, because then I could support what I feel. Like, ‘I feel this, and the app indicates this as well’”
P01: “So that in that moment I can say, ‘Listen, I’ve kept track of my symptoms and I have COPD. Look, the app is giving me a warning’. Maybe that would be supportive in being heard.”
Supports taking adequate actions Q9 P08: “When I would be really short of breath and I would feel really bad, what I would have to do.”
H05: “Maybe it would help them in deciding that this is the moment to take action and stimulate them to do so. The application could reduce the threshold to take that step.”
Supports prompt health care contact Q10 H02: “An app could give an extra sign to patients when they’ve reached a point that their symptoms are so bad, they have to call. That could support patients at times when they feel guilty for calling or asking for help, because the app said that it was all right to make a call.”
Barriers of using mHealth for self-management
Avoiding confrontation with the disease Q11 P01: “I don’t want to be too much confronted with being ill. I’m still working and I don’t know, I just want to be able to do that for as long as possible. So I don’t want to be thinking about being ill all the time.”
P07: “On one hand you really want to know and on the other hand you really don’t!”
H01: “They don’t want it to rule their day. If it’s going well, it’s going well.”
Preference for personal contact Q12 P12: “Yes, I’m leaning towards 1 on 1 contact, I mean personal contact. That’s the most important for me.”
P05: “Being heard is necessary while being at the doctor, that’s what I think… An app doesn’t support that.”
Difficulties with displaying feelings in application Q13 P09: “I would fill out a questionnaire but it’s a bit black and white in my opinion […] How do I feel? Well, I feel ‘so so’. How do you explain ‘so so’?”
H06: “Yes, how sensitive is it when you ask ‘How do you feel today?’ H05 responds:” Indeed, that’s the question, how well able is a patient to give it a rating? H06: “Yes, in that case you need to have kind of a list, if it has to be valid…”
Lack of trust in advice through mHealth Q14 P10: “The dangerous thing is that the app can report something differently than how I’m feeling. In that case, the app prevents me from taking actions I would now do, that’s the downside. I really have the idea that you are the most capable yourself of feeling how you are doing at a specific point.”
P05: “Well…It would surprise me if an app is capable of advising me what to do […] How could an app think for me about what is the right thing to do at a certain point in time? And whether or not I should take pills or get a course of medicine…?”
Having adequate self-management skills Q15 P01: “Well to be honest, I have the feeling that with the knowledge and support I have now, I’m capable to act in case of a upcoming exacerbation…So I don’t have the feeling that it would help me a lot.”
Lack of enthusiasm for mHealth by HCPs Q16 P02: “Because I have the idea that pulmonologists, and everybody, are not waiting for it. Their enthusiasm for these things is a rare thing. Let me put it this way, they’re having their hands full already.”
Not all patients are eligible Q17 H06: “My great concern would be about who is going to use the app.”
H03: “I think that patients with frequent exacerbations just won’t use or even install the app…[…] I had a patient who could not be motivated or be stimulated at all. So no… that’s really hard.”
Could delay health care contact Q18 H06: “A patient should not spent time on reading a forum to find out what other patients with COPD would do.”