Study design & participants

This study was conducted in a teaching hospital in Twente, the Netherlands as part of an international prospective cohort study (the RE-SAMPLE study [27], see Text box 1). The RE-SAMPLE study was approved by Medical Ethical Committee Twente (NL77763.100.21). The current interview study’s protocol was approved by the hospital (K21-20) and the University of Twente Humanities & Social Sciences Ethics Committee (241013). All participants provided written informed consent before participating in this study. By means of semi-structured in-depth individual interviews with patients as well as HCPs, perspectives on multidisciplinary care for patients with COPD and comorbidities were collected. Dutch patients participating in RE-SAMPLE between January 2022 and November 2024 were recruited for the current study purposively between 4 November 2024 and 20 December 2024 based on I) the reported deterioration of symptoms of chronic heart failure (CHF), anxiety, and/or depression (i.e., ≥ 1 AECOPD or comorbid flare-up & increased symptoms of COPD as well as ≥1 comorbidity), and II) a minimal follow-up period of four months. HCPs were recruited from various relevant medical disciplines (i.e., pulmonology, cardiology, medical psychology) and professions (i.e., physician, specialized nurse, psychologist) and needed to be involved in the RE-SAMPLE study and/or care for patients with multimorbidity. All participants signed informed consent before participation in the interviews.

Visualizing patterns of symptom deterioration

Symptoms of COPD, CHF, anxiety, and depression were daily collected until patient dropout or otherwise until November 2024 via individualized e-diaries (Text box 1). The e-diary data were used to visualize patterns (i.e., timelines) of symptom deterioration. Missing e-diary data of up to three consecutive observations (i.e., days) were imputed using a combination of the last observation carried forward and the next observation carried backward, similarly to an earlier study [28].Given the relatively narrow (i.e., daily) time intervals between the e-diary data points, consecutive values are generally highly correlated. Furthermore, symptom variability is better preserved this way compared with other methods such a mean imputation [29]. Hence, this imputation method was considered appropriate. Additionally, AECOPDs (e.g., extra prescribed prednisolone course, AECOPD hospitalization) or comorbid flare-ups (e.g., acute heart failure hospitalization), as registered in hospital patient records, were imputed when these were not reported via the e-diary. The patterns included bullets representing any extent of symptom worsening, and bars covering the episodes fulfilling definitions of acute exacerbations of COPD (AECOPD) and flare-ups of CHF, anxiety, and depression [8,28]. Potential self-reported triggers for AECOPDs or comorbid flare-ups (Text box 1), were added manually on the starting days of either an AECOPDs or comorbid flare-up using symbols. For additional context of time, months were added. This format was chosen to facilitate understanding of symptom deterioration in an accessible and analogical way for lay participants, sometimes with limited health literacy, as these simpler visualizations were preferred and have been shown before to better facilitate comprehension compared with more technical alternatives such as time-series charts [30].

Data collection

The semi-structured interviews were conducted (BR, SvD) between November 2024 and January 2025 in the hospital (patients and HCPs), at home (patients) or online via Microsoft Teams (HCPs). For the patient interviews, a topic guide was constructed based on literature and used to discuss personalized (multimorbid) care and the perceived added value of disease pattern visualizations (see S1 File) in each interview: 1) disease symptoms and their impact [32,33], 2) relatedness of COPD with comorbidity [34], 3) patient-centered organization of disease management and healthcare [32,35,36], 4) decision-making process [37–39], 5) self-management strategies [32,40–42], 6) use of their individual patient pattern of COPD and comorbid symptom deterioration [32,43]. For HCPs, this topic guide (see S1 File) included: 1) management and treatment of diseases [32], 2) organization of multidisciplinary healthcare [36,44], 3) decision-making process [37–39], 4) self-management behavior of patients [32,40,41], 5) the use of patterns of COPD and comorbid symptom deterioration [43] – a selection of patterns was discussed.

In-between interviews, the patient and HCP topic guides were regularly assessed (BR, SvD) to determine whether target questions could be revised for more meaningful responses or if any needed to be added to or removed from the topic guide. After thorough evaluation, no major adjustments were made. Participants did not receive their interview transcript. Qualitative analysis of the interviews was started after collection of four patient and four HCP interviews. Data collection through the interviews was stopped when data saturation was reached [45].

Data analysis

Given the explorative nature of this study, an inductive approach (i.e., researchers derive overarching themes from the data) was chosen for the thematic analysis of the interviews. Following such an inductive approach, the first coder (BR) searched for first-order concepts in the transcript quotes, which were checked by the second coder (SvD), in accordance with the Gioia methodology [46]. These first-order concepts were clustered into second-order themes by the first coder, which was also checked by the second coder. Finally, overarching themes (i.e., the third order) emerged from clustered second-order themes, and were discussed among coders [46]. Atlas.ti 24.2.1 was used for the thematic analysis of the interviews [47]. In addition, relevant patient characteristics (e.g., sex, smoking status, educational level) were extracted from the RE-SAMPLE study database to support interpretation of the qualitative analysis.

Patient perspectives – COPD symptoms clearly influence mental health and well-being

The relationship between COPD and CHF was perceived differently. One patient saw the heart and lungs as directly connected, whereas this was not recognized by two other patients with CHF. The relationship between COPD deterioration and anxious feelings is clear, and can originate from fearful experiences during previous AECOPDs or a more general fear for an uncertain future disease course.

“At that moment, I was sitting on a chair and unable to do anything. (…) Reflecting on it now, I remember the fear I had that I would experience the same thing [exacerbation] again. I was anxious about reliving that sensation, the intense tightness.” – P6

Patients acknowledged that limitations due to COPD can lead to feelings of hopelessness and sadness. Also, they become more socially isolated because of their disease(s).

HCP perspectives – relation between COPD and comorbid symptoms complicates care

All HCPs in pulmonology and cardiology recognized the connection between COPD and CHF. Three HCPs mentioned that COPD can trigger CHF deterioration or vice versa.

“If you have a COPD exacerbation, the pressures in your circulatory system increase. That effects your heart, which might cause more fluid retention. This is a quite logical chain of events. Vice versa, if there’s fluid around the lungs, it can trigger bronchospasms, which can exacerbate COPD.” – HCP4

The HCPs also touched upon the clinical challenge of differentiating between COPD and CHF.

“COPD and CHF share common symptoms, such as shortness of breath or fatigue. Therefore, when a patient reports these symptoms, it can be quite challenging to determine which condition is causing these symptoms. – HCP3

All HCPs recognized a clear link between COPD and/or CHF and mental health. According to them, physical symptoms (mainly dyspnea) can trigger anxious feelings. Anxiety was assumed to originate, besides from symptoms only, also from previous experiences.

“When shortness of breath occurs, people often say: “I have been admitted before and that experience truly scared me”. You notice that this plays a role when they get similar complaints the next time, the fear: “Oh no, will it be like that experience again, and shall I have to be admitted again?” – HCP2

Also vice versa, anxiety was mentioned to provoke dyspnea. HCPs acknowledged that reduced mobility and energy limit, related to COPD and/or CHF, can affects patients’ social network and lead to feelings of sadness or depression.

Using visualizations – improving patient and HCP insights into (concurrent) presentation of COPD and comorbid symptoms

Patients felt that visualizations represent their health status and they could serve as a memory aid. For them, it provided additional insight into their disease and how it can change over time. For the majority of patients, the visualization strengthened their understanding of the relationship between COPD and comorbidities.

The visualizations did not surprise HCPs, since they recognized the simultaneous occurrence of different diseases’ symptoms from practice, as well as the triggers patients reported.

“It [visualization] confirms what you encounter in daily practice, showing that there is indeed a connection between these conditions.” – HCP2

HCPs reported that the patterns could enhance the patients’ understanding of their diseases, but also that they can help HCPs in identifying patients’ health status from the perception of the patient.

“I really find this [visualization] very relevant. It’s interesting, you see… It’s clear that the medical perspective is different from the patient perspective. That’s a fact. So the more I understand the patient perspective, the better I can think along with them. I mean, I know the medical part, the technical side — but if this is also going on, then I can offer things like, “I can refer you,” or “we can try this.” You can respond in a much more targeted way.” – HCP3

Patient perspectives – based on trust on HCP passively contributing to clinical decisions

Decision-making was generally seen as a process in which the HCP proposes a treatment (plan), and the patient either accepts or refuses. They consider the HCP responsible for proposing appropriate treatment options.

“They [the HCPs] are the experts, so I trust their judgment and rely on their expertise.” – P3

Patients did, overall, not consider an active role for themselves in clinical decision-making, though they feel the room to raise concerns (e.g., for side-effects).

“If it [a proposed treatment] really goes against my will, then I will say something about it. (...) But they [the HCPs] know what they are doing, I assume.” – P1

All patients saw decision-making as a communicative and collaborative process with the HCP and expressed satisfaction.

“What is most important to me is, what I just said, that I have a doctor who is approachable, who listens to you and who also gives you an answer to that. And then you come to a treatment plan together, that is just (…) a collaboration, I think, and then you go home with a good feeling.” – P4

HCP perspectives – challenging to fully involve patients in decisions, multidisciplinary collaboration is important yet limited

From the HCP perspective, treatment decisions are based on their understanding of the patient’s needs. Also factors including age, comorbidities, severity of symptoms, disease progression, and side-effects are taken into account. Furthermore, motivation, treatment adherence, lifestyle, and inhalation capacity are considered. Multiple HCPs reported that finding the most appropriate treatment sometimes is trial-and-error.

“When a patient experiences multiple side-effects from various medications (…) it becomes a continuous process of evaluating and identifying treatments that are both effective and well-tolerated.” – HCP2

Medical psychologists considered decision-making patient-centered, with continuous collaboration between the patient and HCPs aiming on making patients active participants of their care, which was seen essential for treatment success. The HCPs working in the pulmonology and cardiology departments reported that, in many cases, it is challenging to fully involve patients in decisions made due to limited treatment options.

“The idea of shared decision-making is somewhat artificial, because that’s not how reality works. (…) For many conditions, you don’t have a choice between treatment options one, two, and three. There simply is a treatment, and you can either choose to take it or not.” – HCP3

In cases where they consider it more feasible, shared decision-making is applied.

“An area where decisions are made more collaboratively is the initiation of oxygen therapy, as this is a treatment patients need to fully understand and consent to. (…) This decision-making process is more strongly aligned with the principles of shared decision-making.” – HCP1

HCPs shared that they feel that, currently, most patients rely on HCP expertise for making decisions. The extent to which patients engage in decision-making varies and seems more for patients with a higher socio-economic and/or educational background. HCPs felt that patients themselves also have to take responsibility with regard to disease management by following medical advice, timely care-seeking, and asking questions.

Comorbidities do not necessarily change the care provided from a certain discipline. Hospital care was reported to be fragmented mostly, which was not considered efficient per se.

“Healthcare is currently structured in such a way that it consists of separate “silos”, which I sometimes see as a problem. (…) It makes healthcare inefficient.” – HCP5

Currently, multidisciplinary collaboration in the hospital seems to primarily consist of telephone calls, referrals and delegation of tasks to other specialties.

“The tricky thing about our electronic patient record system is that you can easily send orders to each other, and people like doing that because: once they’ve sent their order, it’s on someone else’s desk. So, my impression is that it is a good system – one has insight into everything – but it also makes it really easy to just quickly pass orders.” – HCP6

HCPs expected that more intensive multidisciplinary collaboration initially requires additional time, but ultimately leads to time savings and better patient outcomes.

“I believe that collaboration and thorough consultation are very important and ultimately cost-saving. Of course, it takes time (…), but in the end, it is effective.” – HCP7

HCPs feel that their high workload, as well as lack of institutional encouragement, hinders advances in multidisciplinary care.

Using visualizations – facilitating patient-HCP conversations and multidisciplinary collaboration from a shared perspective

Patients reported that the visualizations could provide opportunity for dialogue with their HCP, functioning as a conversation starter.

“When you see it on paper, then it becomes real.”

– “And then you talk about it more easily.” (Partner)

“Yes, maybe so.” – P6

Visualizations can perhaps bridge the gap between the perceived health by giving a more realistic overview with data collected real-time.

“To me, it [symptoms] just quietly continues. And yes, I don’t feel well, but that’s just part of me. And when I see this, I think: ‘yes, that makes sense’”

– “Yes, and do you think this could help a healthcare provider better understand how you are doing?” (Interviewer)

“Yes, I think so. I don’t really reflect on it myself. It happens, and then it’s over, and I forget about it.” – P1

One patient expressed that it provided the ability to explore their diseases together with an HCP.

“It [visualization] gives us something to chat about, like: ‘How do you feel about this? I see this, and I see that. Can you explain that? How does that work for you?’” – P7

HCPs reported that visualizations could facilitate meaningful discussions between them and a patient, too. The fact that visualizations represent daily reality makes it useful for periodical evaluation and perhaps for adjusting ongoing treatments.

“Often, when I ask a patient ‘How did you do last week?’, they don’t always remember exactly how it [acute heart failure episode] started, on which day, or how severe their symptoms were. (…) Maybe we could adjust the treatment a bit more based on that.” – HCP4

HCPs also highlighted the possibility of visualization of symptom deterioration over time to educate patients about their disease and care. It helps identifying patient needs outside of an HCP’s own discipline potentially improving engagement of HCPs from other disciplines and contribute to timely referrals.

“This [visualization] allows you to provide patients with more specific information, moving beyond general explanations, and enables you to inform them more effectively and concisely about the care they require. It could also facilitate earlier referrals, ensuring they [patients] are directed to appropriate services.” – HCP5

Although they saw value of using symptom deterioration patterns for decision-making, they reported that lack of detail in visualizations could limit effective use. Also the limited time for consultation was reported as a barrier for implementation.

Patient perspectives – self-management gives autonomy, but is challenging in a multimorbid context

Current self-management strategies, as reported by patients, included to stay physically active, maintain a healthy diet, quit smoking, and pace their energy. Being able to respond to symptom deterioration themselves, for example by taking additional medication or doing breathing exercises, gives patients a sense of autonomy with regard to their care.

“I have the same dilemma when it comes to taking prednisolone. I don’t take it easily. I am currently constantly struggling with the question: should I take it or not yet? (…) Ultimately, it’s my decision. The very first time, the doctors decided for me, the first time I took it. Until I was told: ‘You should always make sure you have it at home.’ So now, I always keep a box in the house.” – P6

Most patients felt confident in self-managing their diseases having sufficient knowledge about their disease and self-management skills. Barriers for effective self-management were also reported by patients, such as increased symptoms during physical activity challenging an active lifestyle.

“I am thinking about it because I know that the way I am living right now is not good. I do not get enough exercise; I use my mobility scooter for everything. But I also cannot do without. I get so out of breath. Even if I have to walk from here to the garbage bin, I’ll still take the scooter.” – P1

Also, struggles with maintaining a healthy weight were expressed. In response to symptom deterioration, some patients reported struggles to perform breathing exercises or feelings of frustration when ‘nothing seems to help’.

“Wednesday, well, I had done some exercise in the morning, and we had plans to go out in the evening. So I thought, let’s take it easy the afternoon since we’re going out later. And around 6 o’clock it [severe breathlessness] started. So I was taking it slow, sitting down… And then in the evening, I was so short of breath still. It just didn’t work. I was really breathless. I simply couldn’t go out. And then I get so frustrated. That it just doesn’t work.” – P6

Additionally, complexity of multiple medications was reported to lead to doubts about their effectiveness and to confusion.

“I had been very sick, (…) which caused my potassium levels to drop dangerously low. I should’ve stopped that pill, and I didn’t. But I have no idea which pill exactly I should stop taking. I wouldn’t know.” – P1

HCP perspectives – understanding of one’s diseases is essential for successful self-management

Self-management was seen as an important component of care in patients with multimorbid COPD, according to all HCPs. HCPs provide information and advice about self-management strategies with regard to an active lifestyle, a nutritious diet and quitting smoking. Additionally, HCPs in pulmonology offer practical guidance regarding breathing exercises and inhalation technique. All three disciplines are increasingly implementing disease and symptom monitoring through mobile apps to increasingly involving patients in managing their own disease. Apps were also expected to lead to better understanding of their diseases in patients, which was mentioned to be essential for self-treatment.

“Being able to take additional diuretics [in response to increased CHF symptoms] independently is only possible if patients have a good understanding of their disease.” – HCP 3

According to HCPs, self-management facilitates stronger patient autonomy but they keep on seeking ways for optimal self-management support. Several HCPs mentioned that advice often needs to be repeated without observable effects and that educational brochures or personalized self-management action plans are often not being used.

“Almost all of them [patients with COPD] have an action plan. But can they actually recall it? Very rarely. (…) It’s really a challenge, because they just put it in a drawer.” – HCP1

Not all patients seem to be fit for self-management according to HCPs. Patients have to be interested and motivated but also disciplined. Also, lack of initiative, lower education level, and limited digital literacy – in case of telemonitoring – can complicate self-management. Furthermore, HCPs reported that the complexity of multimorbidity also hinders successful self-management.

“When it comes to self-monitoring and understanding the disease, it’s really about the whole disease process. Ideally, though, that also requires a certain level of intelligence. With heart failure, for example, patients often have at least four medications, and a list of ten isn’t uncommon. (…) If you really know why you’re taking your medications and for which diseases, you’re more likely to take them correctly and consistently. So, it’s all connected, in a way.” – HCP3

Using visualizations – offering patients a clearer perspective on their health and care needs

The majority of patients did not specifically touch upon the use of the visualization for self-management. One patient shared that visualizations could help in changing and/or maintaining self-management behavior. Since such visualizations could provide a better idea of the impact of certain choices on their health, it could lead to more proactive disease management by patients themselves.

“With the COPD, I’m glad I quit smoking, even though it’s still very challenging. And yes, I know I need to speak up if things aren’t going well because I just need time to adjust. (…) This [visualization] really shows me that I’m sicker than I had previously admitted to myself.” – P7

HCPs mainly reported that, for patients, the visualizations could lead to a clearer understanding of their disease. This might improve self-management when patients are motivated to take more ownership regarding their health.

“I think it would mainly have a positive impact on self-management. That would be the biggest advantage in my opinion: I think it would help patients gain a clear understanding of what is going on at the moment. On which days do they really experience symptoms? And what exactly are the triggers?” – HCP4

HCPs also expressed doubts regarding the burden of daily symptom tracking on the patient. Additionally, patients might be discouraged when behavior changes are not reflected by improvements in the visualizations.

“A patient may feel like a failure if they are unable to manage their condition effectively, which is not the intended outcome. For instance, patients might think: ‘I have this issue, I struggle with anxiety, and I still can’t get it under control. How frustrating! What a failure I am.’” – HCP7