Facilitators and Barriers of Adherence to Multi-Disease Exacerbation Action Plans in COPD Patients – A Qualitative Study

Figures & data

Figure 1. Brief timeline of the COPE-III study self-management intervention content.

Note: Figure adapted from Figure 1 in the paper of Lenferink 2013 [36] (page 83) and Table 1 in the paper of Lenferink 2019 (page 3) [22].

Figure 2. Phases of a deductive-dominant qualitative content analysis approach.

Note: Figure adapted from Elo 2008 [44]. A psychology student was involved in all analysis steps, except for step 12.

Figure 3. Application of the Capability, Opportunity, Motivation of Behavior model to patients’ adherence to exacerbation action plans.

Note: This is an adapted version of Figure 1 in the paper of Michie 2011 [47] (page 4). Descriptions in italic refer to definitions reported by Michie 2011 [47] (pages 3-5).

Table 1. Baseline characteristics of interviewed COPE-III intervention patients (n = 10).

ID	Age	Sex	Nationality	Comorbidity	Educational level*	Health literacy confidence^#	Living alone	Motivation^$	Cognitive impairment (MMSE [38] score)^∼
P1	72	Male	Australian	IHD Depression	Low	Confident	Yes	7	28
P2	64	Male	Australian	IHD	Middle	Confident	Yes	9	30
P3	59	Male	Australian	Anxiety Diabetes	Middle	Somewhat confident	Yes	6	30
P4	64	Male	Australian	IHD	Middle	Unconfident	Yes	10	29
P5	67	Female	Australian	CHF Depression Diabetes	Low	Unconfident	Yes	8	29
P6	74	Male	Dutch	CHF	Middle	Somewhat confident	No	7	28
P7	64	Female	Dutch	IHD Diabetes	Low	Unconfident	No	8	28
P8	67	Female	Dutch	CHF	Middle	Somewhat confident	Yes	8	25
P9	83	Male	Dutch	IHD	Middle	Confident	No	7	29
P10	74	Female	Dutch	Depression	Low	Somewhat confident	Yes	8	29

Notes: *Educational level was classified as low: no school or primary school; middle: secondary school or vocational college; or high: undergraduate or postgraduate. ^#Health literacy confidence was measured by asking patients the question “How confident are you in completing medical forms by yourself?” This was classified as follows: confident, somewhat confident or unconfident. ^$Motivation was self-reported by the question “What is your motivation to use the daily symptom dairy and action plan?”, in a range between 0-10 (0 = totally unmotivated and 10 totally motivated). ^∼A score between 25 and 30 was considered normal, indicating no cognitive impairment [38].

Abbreviations: ID, Identification; P, Patient; IHD, Ischemic Heart Disease; CHF, Chronic Heart Failure; MMSE, Mini Mental State Examination score [38].

Figure 4. Facilitators and barriers of patients’ adherence to exacerbation action plans mapped into the Capability, Opportunity, motivation of behavior model.

Note: This is an adapted version of Figure 1 in the paper of Michie 2011 [47] (page 4). Descriptions in italic refer to definitions reported by Michie 2011 [47] (pages 3-5).

Table 2. Facilitators of patients’ adherence to multi-disease symptom diaries and action plans.

Components	Sub-components	Facilitators	Definition	Quotes
Capability	Psychological	Improved comprehension of disease and treatment	Knowledge and understanding about disease, treatment, desirable and undesirable behavior	Q1: “Well, I have once used the insulin syringe, because my levels were on a certain height. Because I was taking prednisolone. I didn’t know that actually of the glucose, I didn’t know exactly what I had to do when my glucose levels were too high. I know that now as well thanks to this [action plan].” (P7). Q2: “Yes, things like that you know more about it. That you know a little better how you ought to behave.” (P9).
Motivation	Reflective	Positive feelings about the intervention	Feelings about efficacy, necessity or importance of intervention and treatment, concerns about current or future adverse events, general aversion to taking medicines	Q3: “I actually found it [symptom diary and action plan] very good. Very very good. As I said I wish I was still using it. In some respects, I wish I was still using it. Because I had marked two red ones on the bottom and about three red ones on this one and two on the following day. And I knew then that I have got to take it [self-treatment]. And that’s what I meant. This is brilliant!” (P1) Q4: “It’s [symptom diary] useful, it allows me to see how I’m going, assess myself. I haven’t had a lot of feedback on it, so. it’s useful but all it is. it’s useful as far as being able to see the trends and how your managing and how you’re going. And it’s incredible how up and down it goes, that some days are really good and others aren’t so good and even some weeks are good and some aren’t so good so you see.” (P4). Q5: “It [symptom diary] helped me understand it [symptom recognition] a bit more, because I did this and I tick the reds and I tick this and eventually you work out when to worry because I’ve been to hospital a couple of times and my heart hurt and it wouldn’t stop hurting, but it wasn’t spasming it was just hurting. In the morning it was fine so I’ve learnt that sort of pain I don’t worry too much about and it generally comes along with chestiness in my lungs, so my lungs are causing my heart to do it. It generally comes along with chestiness in my lungs, so my lungs are causing my heart to do it. So if I keep them clean but sometimes I can’t, you know? Might be a heavy pollen day somebody might drive past with a trailer full of cuttings or I walk past a tree that’s pollenating, just one sickly smelling tree that hurts” (P2). Q6: “It’s [symptom diary and action plan] everything it was supposed to do. It kept me out of hospital, it got me to the doctor before I got too sick, especially to garden mold. Because it does, even though this is for COPD, it separated the garden mold from the COPD and that does it.” (P2).
		Improved self-confidence	Beliefs about one’s own capabilities to engage in a behavior	Q7: “Because it’s [symptom diary and action plan] something I can refer to, because sometimes you get tired and you get worries and this is sort of your conscience. You can read it in yourself, I know I haven’t got that, I’ve got that but don’t have that, oh it’s not too much. It does give you the confidence.” (P2). Q8: “Now the opportunity is there, then I just know that it [self-treatment] is possible. And having the action plan next to it I am not insecure and I will just do it. That has also to do with a certain ignorance about medication and drug use, so I want to be very sure about what I take and if it helps. Then, you will find that out very soon.” (P8).
Opportunity	Physical	Professional support	Support availability from the patient’s healthcare professionals that facilitates or inhibits initiation of action	Q9: “At first I asked questions and that cleared it up. The nurses I talked to on the phone cleared it up.” (P2). Q10: “I go on prednisolone if I make two ticks of the box and if they say go ahead. Then my doctor will tell me to either stay on it or go off it and put me on another drug for my garden mold.” (P2). Q11: “I also felt more secure because I could call. I wasn’t only more secure, I found it more pleasant as well, that you know like, I always have a back-up.” (P6). Q12: “That is something that the doctor told me, like, “don’t dread it and just take the medication, because everyday the symptoms progress will make it worse for you. So that tells me like, to just do it.” (P8).

Abbreviations: P, Patient; Q, quote.

Table 3. Barriers of patients’ adherence to multi-disease symptom diaries and action plans.

Components	Sub-components	Barriers	Definition	Quotes
Capability	Psychological	Difficulties to recognize symptoms: insufficient comprehension of disease and treatment	Knowledge and understanding about disease, treatment, desirable and undesirable behavior	Q13: “Now first question is breathlessness, say today, not more than usual, slightly more than usual, significantly more than usual. Yeah, what am I doing [confused] breathlessness yeah slightly significantly, sputum production, not that much. At the moment I don’t seem to have a real normal, for me you know.” (P5). Q14: “When sputum changes color, when that starts going like a green color and stuff like that, then I know I’ve got an infection coming, but that can be green today and tomorrow it’s just a sort of yellowy color, so I can’t sort of say, my sputum is this color, I better start taking antibiotics, I’m better to wait a day or so.” (P5). Q15: “Mine [symptoms] might take three weeks to finally comes out but there’s no sign of when. As I said I might sit on these line for months [points out at the diary, second boxes in the row] and then all of the sudden bang! My symptoms just coming along like, just ‘bang!’ but I can actually feel it coming but it’s not to the point that I need it [medication]. So I might just go and sit down and the next moment just… The world just crashes in on you.” (P3).
		Difficulties to recognize symptoms: decreased cognitive function	Reduced capacity for judgment, thinking, memory, and decision making	Q16: “When you have got the problem of not breathing or something you don’t concentrate like you normally would.” (P1). Q17: “I don’t concentrate very well any more. Like you’ve got a question herefelt dizzy or light headed? Not more than usual, more than usual. That’s very hard to answer because I’ve also got vertigo, so you know, some days I get really dizzy and some days I can’t get out of bed because it’s so bad and then the breathlessness and the heart and things like this. Sometimes I’ve got rheumatoid arthritis and osteoarthritis and all that as well, so on the bottom here for me I’m talking about is pain, pressure, heaviness, tightness in one or more of your chest, neck, jaw, arms, back, shoulders and all this sort. I get that all the time, so it would be quite confusing because I can fill in all of that and it’s got nothing to do with my heart or anything like that.” (P5).
		Dislike toward daily symptom monitoring: insufficient executive function	Low capacity for monitoring, planning and executing behavior	Q18: “I just never had any time for it [completing symptom diary] and then I thought I will do it tomorrow, and tomorrow would not be tomorrow. And also not the next week and then eventually it would become the next month.” (P6). Q19: “Yes, you have to use it [symptom diary] every day, it is not easy. It is a task you have to do every day over again, and you have to think about it [completing symptom diary] every day. Because, for example, I thought by myself late in the evening like, oh, I still have to fill out my diary today”. (P7). Q20: “Only when there were complaints I filled it [symptom diary] out. (…) I’m sorry, I just forgot [laughs]. I forgot to do it [completing symptom diary] every now and then”. (P9). Q21: “And then at the end of the month ‘oh, that reminds me, I will send that [symptom diary] shortly’. Because it had to be sent. And then you are ticking boxes for half an hour. (…) Laziness. (…) Too much work.” (P6).
Motivation	Reflective	Negative feelings about intervention	Negative feelings about efficacy, necessity or importance of intervention and treatment, concerns about current or future adverse events, general aversion to taking medicines	Q22: “And I don’t like taking the steroids. I try to avoid them. But I had to take them.” (P1). Q23: “What bothers me is that, in principle I dislike an amount of medicines and certainly when it comes to prednisolone and antibiotics. So that is what’s in the way, that I will think twice if I take it or if I won’t take it.” (P8). Q24: “No I just have a good cry and, because I’m on tablets for that, I’m on citalopram for the depression. I have a good cry, I yell at my son, and I have a good cry and, he gives me a cuddle.” (P5)
	Automatic	Negative mood state	Negative emotions or mood states affecting thought processes and actions during the intervention	Q25: “I don’t do much about it anymore. What happens, happens and I just can’t do much about that. If it wasn’t for her [spouse] still being around, I would be done with it. As far as I’m concerned, it is over.” (P9). Q26: “I’ve been through a traumatic time in the last few years and a lot of questions I don’t cope with. You know, I find it [symptom diary] too much and I can’t fill in forms or anything anymore I get really frustrated and upset and things, I found this was very taxing for me but not even so much the questions it was just the fact it was a form and I had to fill it in and I just found it very hard to cope with.” (P5).
Opportunity	Physical	Complexity of symptom diaries and action plans	The extent to which intervention tools are difficult to adhere to	Q27: “It is not hard, it is too much work. Way too much. I have to do too many things. Because you have to fill out all of this [diary number 1] and then all of that [diary number 2] and then that again, and that again and then that again. It makes me. No, stop it. And if you don’t fill it out, you cannot take action either.” (P6). Q28: “To fill it [symptom diary] out, I find it difficult. I never actually filled it out every day. In my agenda I did keep track of where there were any particularities were, and what these particularities were. If there are any peculiarities then I think I should just keep a close eye on it, because I think the boxes are really small.” (P8). Q29: “I had filled out those forms once, but a call once a week is more effective than filling out that whole list once a month. Then you will have a more realistic view than when you fill out a form every month and where I think by myself, ‘oh yeah, what was that again…’”(P6).

Abbreviations: P, Patient; Q, quote.

Table 4. Overview of patients’ perspectives of roles toward disease management (n = 10).

Perceived own role	Perceived role of healthcare professionals	Quotes
Patient feels mainly responsible for their own disease management. Help from HCPs is required when symptom management feels beyond their own control (n = 4).	Patient feels the HCP to be responsible for disease management during and after acute exacerbation phase.	Q30: “Because I don’t have major issues, I don’t believe they need to do a lot anyway. If I was, let’s say I got enough to have to go to the hospital, then it is a different story. My doctor would then have to really make sure that I’m doing things correctly. As I said I like to do things myself but until I get to that point where I have got to go to the hospital and then be on the oxygen for two days.” (P1).Q31: “Everything yeah. Medication, my therapy’s like doing my exercise and my breathing things. It’s all mine until that point where I can’t do it anymore.” (P5). Q32: “Making sure that it goes away a bit, making sure that I will take the medication right and that I give serious thought to what I do. And when it is getting too bad, call in the doctor.” (P7). Q33: “Taking the medication on time. That is the most important. Calling the doctor. If it [increased symptoms] doesn’t go away, if it doesn’t get better. If I don’t sound the alarm, then nothing will happen. They [healthcare professionals] can’t do anything then.” (P10).
Patient feels responsible for disease management but help from HCPs is required with disease monitoring and management during stable phase (n = 2).	Patient feels the HCP assistive in disease monitoring and management during stable phase, and exacerbation recovery during and after acute exacerbation phase.	Q34: “To me, well if it goes wrong, to pick up the part of me that’s gone wrong because I have bronchiectasis, COPD, asthma and chronic sleep apnea which makes it really hard, and they act up, my heart acts up more. So if I have problems with my heart it’s generally because of my lungs, so I need a professional to make sure that it’s just not my heart.” (P2). Q35: “My role is: in the first place I’m a patient and I’m coached by the doctor and recently also by a respiratory nurse. My responsibility is to keep an eye on my own situation very closely and taking the prescribed medicines. (…) I think that the doctors have their own responsibility toward their patients. Their responsibility is that they just monitor my well-being and just that they also prescribe the appropriate medication.” (P8).
Patient feels not responsible for their own disease management (n = 4).	Patient feels the HCP to be mainly responsible for disease monitoring and management during stable phase and during and after acute exacerbation phase. The HCP is the expert and should decide what patients need.	Q36: “I don’t really have a role. I just go with the flow and if I feel crook. Cause mine come on just like that [snaps fingers]. What is my role? Well phone up for an ambulance. Because I was always told by one guy. He said if you are feeling crook just phone. Whether there is anything wrong or not. Just phone. But I do know when I need one.” (P3). Q37: “My role is to, well, I suppose it’s to assist any medical people and continue to do what they suggest. I don’t really know what else is my role. I mean it’s to follow suggestions of professionals and do what they say. That’s about as much as I can do to improve it.” (P4). Q38: “What I have to do. No idea! I do what they [healthcare professionals] tell me to do and that’s about it. And what they say is what my physiotherapist says. Because he coaches me. And he says “you have to do these exercises for COPD”, but the other symptoms I have those are because of my heart attack that I had. That I have to do some exercises for those symptoms too, for my balance and what else, but that is all I have.” (P6). Q39: “I do very little about it anymore. What happens, happens, and I just can’t do much about it. It has been enough for me. I take my medicines and I just accept it. I have to accept that I have it [COPD] and there’s nothing more I can do about it.” (P9).

Abbreviations: P, Patient; HCP, healthcare professional; Q, quote.

Lenferink A, Frith P, van der Valk P, et al. A self-management approach using self-initiated action plans for symptoms with ongoing nurse support in patients with chronic obstructive pulmonary disease (COPD) and comorbidities: the COPE-III study protocol. Contemp Clin Trials. 2013;36(1):81–89. DOI:10.1016/j.cct.2013.06.003.

 PubMed Web of Science ®Google Scholar

Lenferink A, van der Palen J, van der Valk PD, et al. Exacerbation action plans for patients with COPD and comorbidities: a randomised controlled trial. Eur Respir J. 2019;54(5):1802134. DOI:10.1183/13993003.02134-2018.

 PubMed Web of Science ®Google Scholar

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–115. DOI:10.1111/j.1365-2648.2007.04569.x.

 PubMed Web of Science ®Google Scholar

Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42. DOI:10.1186/1748-5908-6-42.

 Google Scholar

Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–198. DOI:10.1016/0022-3956(75)90026-6.

 PubMed Web of Science ®Google Scholar

Data availability statement

Data that support the findings of this study are available upon reasonable request (corresponding author, J. Schrijver).