In a Strained Healthcare System, Patients with Advanced COPD Struggle to Access the Needed Support from the Healthcare Professionals – A Qualitative Study

Abstract

This study aimed to explore the self-management strategies of Danish patients living with advanced Chronic Obstructive Pulmonary Disease (COPD), with a particular focus on their daily life and their interactions with the respiratory outpatient clinic. Data were collected through semi-structured interviews with 11 patients with COPD affiliated with a Danish respiratory outpatient clinic. The data were thematically analyzed as suggested by Braun & Clarke. The analysis revealed one overarching theme, three main themes, and six subthemes. The overarching theme ‘In a strained healthcare system patients with COPD struggle to access needed support to be able to self-manage their disease’ revolved around the challenges that patients face in an overburdened healthcare system as they seek support to effectively self-manage their condition. The three main themes were: (1) Only physical symptoms provide legal access to the respiratory outpatient clinic, (2) For patients, the measurements serve as indicators of their health status and overall well-being, (3) Healthcare professionals’ skills and not the mode of contact matters to the patients. Healthcare professionals should be aware that the rhetoric surrounding a busy healthcare system with a stressed-out staff also affects patients. Patients with COPD may be particularly sensitive to this message and try to avoid burdening the healthcare system further by setting aside their own needs. However, this approach can lead to neglecting symptoms of deterioration and mental symptoms, which increase the risk of disease progression and subsequent risk of hospital admission.

Keywords:

• COPD
• daily life
• healthcare system
• support
• outpatient
• qualitative

Introduction

Approximately 400,000 people suffer Chronic Obstructive Pulmonary Disease (COPD) in Denmark, and 50,000 of these have advanced COPD [1]. According to the Danish COPD database, 15,256 patients had one or more planned outpatient hospital contacts in 2022 due to COPD, and 10,280 patients were admitted due to acute exacerbations [2].

COPD is characterized by unpredictable disease trajectories and often with numerous exacerbations and hospital admissions in the advanced stages of the disease. Each exacerbation causes a loss of functional level, is potentially life-threatening and increases the risk of acute hospital admission [3]. Exacerbations or prevalent symptoms like comorbid anxiety and depression can in some cases be prevented or treated at an early stage so further deterioration and loss of function level can be avoided, and the patient can remain at home [4, 5].

Over the last five to ten years, a notable shift in the way we think organization of respiratory outpatient clinics has surfaced [3, 6, 7]. Traditionally, patients with COPD were seen by respiratory physicians and nurses at predetermined, regular intervals, occurring semiannually or annually. As these outpatient visits were planned far in advance, the visits had no relation to the patients’ present needs or the progression of the disease. To meet the individual and complex needs of patients with advanced COPD, current knowledge recommends a transition in the organization of respiratory outpatient clinics toward a more responsive and adaptable model where patients are encouraged to self-manage and proactively engage in their healthcare by reaching out to the outpatient clinic in case of increased symptoms, signs of exacerbations or need of guidance or support [3, 6, 8–10]. There are several ways in which respiratory outpatient clinics can be organized to emphasize patients’ current needs and to provide easy access to respiratory healthcare support as an alternative to the traditional fixed controls [11, 12]. In addition, there are several ways patients with COPD can interact with outpatient respiratory healthcare professionals (HCP) etc. virtual-, telephone-, or physical consultation, just like some physician consultations can be replaced with nursing consultations and thus free up physician resources to focus on the more complex patient cases [7, 9, 13].

There is no one-size-fits-all model for organizing respiratory outpatient clinics in the twenty first century. However, an essential gap in our understanding exists regarding what patients with COPD specifically seek from the respiratory outpatient clinic to effectively be able to self-manage their daily life. Self-management strategies implies helping patients acquire and practice the skills needed to carry out disease-specific medical regimens or behaviors and have a day-to-day control of the disease. Self-management strategies also includes assessment of symptoms and subsequent problem-solving [10].

Understanding patients’ needs and preferences is crucial for optimizing the support provided by these outpatient clinics and enhancing patients’ self-management skills [14]. This, in turn, contributes to improving the care and treatment of patients with advanced COPD, subsequently preventing unnecessary hospital admissions.

Therefore, the aim of this study was to explore the self-management strategies of Danish patients living with advanced COPD, with a particular focus on their daily life and their interactions with the respiratory outpatient clinic.

Materials and methods

Design

This is a qualitative study exploring the perspectives of patients with advanced COPD on daily life and interaction with a respiratory outpatient clinic. The study is based on semi-structured interviews and data-driven thematic analysis as suggested by Braun & Clarke [15–18]. The study complies with the Consolidated Criteria for Reporting Qualitative Research (COREQ) [19].

Setting and participants

The study participants were recruited from the outpatient clinic in the Department of Respiratory Medicine, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark. All participants were diagnosed with severe or very severe COPD and the majority were classified as GOLD E [3]. There were no additional inclusion or exclusion criteria beyond being affiliated to the outpatient clinic, diagnosed with severe COPD, and able to give informed consent.

The sampling strategy was convenience, although the greatest possible variation in terms of sex, age, and disease severity was sought. Data collection continued until we achieved ‘saturation’—a point where additional information did not yield new insights related to our research aim, aligning with the concept of ‘information power [20]. By using this approach, we aimed to maintain methodological integrity while navigating practical limitations, ensuring a diverse range of perspectives informed our findings, thus bolstering their credibility and applicability.

Patients were invited to participate in interviews when they attended or had telephone contact with the respiratory outpatient clinic.

Data collection

All interviews were conducted in the patients’ homes from December 2022 to February 2023 and lasted from 14 to 75 min (mean 37 min (SD 18)). The introductory small talk was not recorded and transcribed, so the interview length refers to the time spent discussing topics within the interview guide. All the interviews began and ended with small talk about the weather, housing, today’s news, etc.

All interviews were recorded and transcribed verbatim by the first author. The interviews were conducted by the first author who is both a trained interviewer and an experienced respiratory nurse. The interviewer was not part of the patients’ treatment team and did not know the informants beforehand. The patients were familiar with the interviewer’s nursing expertise. However, they were also aware that in this setting, the interviewer could not offer professional advice and guidance. If needed, the interviewer, would assist the patients in establishing contact with relevant health professionals afterwards.

The interview guide (Table 1) was based on discussions in a cross-disciplinary respiratory team of clinicians and anchored in existing literature as well as the researchers’ and clinicians’ experience in COPD treatment and care. The interview technique was open-ended with follow-up questions related to the patients’ response. Probes like “Can you explain in more detail?” or “can you give an example?” were used to deepen and nuance the answers.

Table 1. Interview topic guide.

Themes	Questions
Daily life with COPD	Can you talk me through a typical day with COPD? What are your main daily challenges?
Managing symptoms	Describe what happens when your symptoms worsen. Which strategies are most and least effective? How do you interact with the respiratory clinic in these situations? Share your experiences with acute exacerbations. How could support be improved during these times?
Contact with the respiratory outpatient clinic	What is our experience with the respiratory outpatient clinic? Describe your last outpatient follow-up visit. What aspects of these visits are helpful or unhelpful? What matters to you in the contact with the respiratory physicians and nurses? What kind of support do you find most helpful from the respiratory outpatient clinic?
Mode of contact with the respiratory clinic	Have you had telephone or video consultations? Describe these experiences. What are the pros and cons of these types of consultations for you? Are there any services or support you wish were available?
Final Thoughts	Is there anything else you’d like to add or discuss about your experience with COPD self-management and the outpatient respiratory clinic?

Data analysis

The data analysis employed in this study was grounded in the reflexive thematic analysis approach as described by Braun and Clarke [15, 17, 21]. We consciously adopted an inductive stance to minimize the influence of preconceived notions or theories, particularly acknowledging the first author’s clinical background. Initially, all researchers immersed themselves in the data to become intimately familiar with its depth and nuances. This involved extensive reading and re-reading of the transcripts, during which descriptive notes were independently made by each researcher. These notes served as preliminary codes and were crucial for capturing initial impressions and patterns within the data. Subsequently, all three researchers convened multiple times to compare and discuss these preliminary codes. Through these discussions, discrepancies were resolved, and a consensus was reached, leading to the development of the first conceptual map.

In line with Braun and Clarke’s six-step approach [15, 18], we then systematically organized these codes into broader themes and sub-themes. This process was iterative with the researchers moving back and forth between the raw dataset and the initial themes. As a next step, we rigorously revisited the entire dataset, aligning it with our defined codes and themes. This step was critical for validating the integrity and coherence of our thematic structure, enabling us to refine and finalize our themes in a manner that accurately represented the data. Although we opted not to use qualitative software, we maintained a rigorous organization of our data through a manual method.

Despite our choice of manual tools such as paper, post-it notes, and a large whiteboard for data organization, the analytical process was rigorously managed, mirroring Braun and Clarke’s six-step approach to thematic analysis [15]. This hands-on approach facilitated a comprehensive engagement with the data and ensured that our thematic development was systematically grounded in the data itself.

Ethical considerations

All participants were informed both in writing and verbally about the aim of the study and its voluntary nature. All participants were informed both in writing and verbally about the aim of the study and its voluntary nature. They were given a minimum 24 h to consider their participation and the opportunity to ask detailed and clarifying questions. All participants signed an informed consent prior to the interview. The participants’ anonymity and the confidentiality of the data to be obtained from them were ensured, and the study followed the guidelines of the Danish Data Protection Agency and the European Union’s General Data Protection Regulation. The study was conducted in accordance with the Declaration of Helsinki and approved by the chief nurse and chief physician at the Department of Respiratory Medicine, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark. According to The Ethics Committee (https://en.nationaltcenterforetik.dk/) in Denmark, the Biomedical Research Committee Act does not apply to this study or qualitative studies in general.

Results

A total of 15 patients were invited to participate in an interview. Eleven patients agreed to participate, three declined due to fatigue and one never showed up. In two cases, the patient’s wife was present during the interview. Patients’ characteristics are shown in Table 2.

Table 2. Characteristics of patients with COPD interviewed for the study (n = 11).

Sex, n, men/women	7/4
Ethnicity, n, Caucasian	11
Living alone, n	6
Age, year	71 (7.8)
Lung function (Fev1% of predicted)	25 (3.5)
mMRC	3 (0.8)
CAT	24 (3.5)
BMI	24 (4.7)
Smoking status, n	1 smoker / 10 ex-smokers

When not described otherwise, the figures represent mean, and standard deviation (SD).

Our data analysis revealed an overarching theme, three main themes and six sub-themes. (Table 3). The overarching theme ‘In a strained healthcare system patients with COPD struggle to access needed support to be able to self-manage their daily life’ revolved around the challenges that the patients face in an overburdened healthcare system as they seek essential support to effectively manage their condition. All patients described a healthcare system and HCP that were busy and stressed, leaving them with the prevailing feeling that as patients, they should aim to minimize disruption as much as possible. This contributed to a reluctance to reach out for help or guidance.

Table 3. Overarching theme, main themes, and Sub-themes.

Overarching Theme	In a strained healthcare system, patients with COPD struggle to access the needed support to be able to self-manage their daily life
Themes	Only physical symptoms provide legal access to the respiratory outpatient clinic	For patients, the measurements serve as indicators of their health status and overall well-being	Healthcare professionals’ skills and not the mode of contact matters to the patients
Sub-themes	Physical symptoms trigger support	Measured values play a pivotal role in patients’ self-management strategies	It is the content in the contact that matters to the patient
	Mental and social issues do not trigger support	Patients blindly trust medical technology	Difficult to be proactive in a busy healthcare system

…if I were asked whether to continue treatment if I had a cardiac arrest. I’ve thought about this a lot, and if asked, I would say no, but no one has asked me, and it isn’t written anywhere. I think it’s something we need to talk about, but no one has asked what I would like. I would say thank you if they took the time to talk with me about it (ID 9, 65 years).

Only physical symptoms provide legal access to the respiratory clinic

Patients felt that having physical symptoms provided them with access to care and treatment in the respiratory outpatient clinic, whilst struggling with mental symptoms and social issues did not.

Physical symptoms trigger support

Several patients describe how they did not want to be seen as whiny or weak, and thereby disturb the HCP unnecessarily. If the patients proactively had contacted the respiratory outpatient clinic, it was important to them that they were perceived as ‘truly ill’ by both the HCP and themselves.

They [HCP] have a hard time telling me that they are drowning in business, and maybe they should be better at saying: everything is extremely hectic here today, you must go to your own doctor and get some infection values [bloodtests] taken to start with [ID10, 59 years].

Patients described how physical symptoms and particularly abnormal blood test values served as a gateway to the respiratory clinic and specialized respiratory medical attention. Based on many years of experiences with COPD and the healthcare system, patients described how they had learned that ‘abnormal values’ were what counted as ‘truly ill’ and something that was taken seriously in the healthcare system and triggered help and support.

Several patients mentioned that they had acquired pulse oximeters and blood pressure monitors themselves to be able to measure values at home before contacting the outpatient clinic.

When I get sick, I am my own hospital. I can feel when I have a detour. Then I immediately start measuring temperature and oxygen saturation, and then I take the nebulizer. The nurse has told me so many times, so that I now know what to do. (ID 5, 67 years).

However, patients also noted occasions where the HCP’s focus on values and measurements seemed ritualistic and detached from the patients’ context and reality.

I come for check-ups every 3 - 4 months and there I get my lung function measured if the devices are working. Besides that, what I get out of it is very limited. I am told that my air is so and so, and then we talk a little about my medicine, but nothing new, right? I don’t feel I get anything out of it that I can use afterwards (ID 6, 75 years).

The questionnaires [CAT and mMRC] I have to answer every time. I think I have filled them out 16 million times. So, it’s annoying. And I get no feedback. Although it is simple questions, it is still complicated, because the questionnaire is difficult to understand (ID 11, 65 years).

Mental and social issues do not "trigger" support

In contrast to physical symptoms, patients experienced that psychological and social issues frequently went unnoticed or untreated by HPC, leading to patients feeling neglected.

No, I don’t talk about that with them (HCP). There have actually been periods where I’ve felt like just getting off [dying]. When there are so many things that are just tough and uphill, and it wears us down. Now, my wife has been on sick leave for a while because it has been so hard with me. I would like to change our lives, maybe visit some people on my own, because my social life has also fallen apart (ID 10, 59 years).

Some patients encountered a lack of empathy and understanding, underscoring the importance of HPC paying closer attention to their experiences and practical knowledge and thereby support their self-management strategies.

I could sense from her that what mattered was her understanding of my illness, not a damn thing about what my understanding of it was. She was really ‘here comes the professional full blast’… I know she has a higher education than me, but that’s not why I came. I came because I have a problem, but she was like ‘Let’s get some numbers on the table, and then maybe I can do something for you there…’ There are some conversations where you just feel better when they’re over [ID 10, 59 years].

Furthermore, patients emphasized the need for HPC to listen more attentively to their experiences and consider their practical knowledge about managing their condition.

I wish they would listen a bit more. Because we are the ones who feel it, and it may well be that they have a whole lot of technical knowledge, but they don’t have the practical knowledge that we have (ID 4, 82 years).

The patient statements revealed a significant disconnect between medical knowledge and the lived experience of COPD, emphasizing that patients themselves view the integration of their personal expertise into treatment strategies as essential for effective healthcare.

For patients, the measurements serve as indicators of their health status and overall well-being

The patients expressed how the interpreted the recorded measurements as benchmarks for their health condition and personal sense of well-being. They exhibited a profound confidence in medical technologies and concrete data. However, they also reported discrepancies between these objective data and their personal health perceptions. Furthermore, they highlighted the mental impacts of constant health monitoring, pointing out the complexities involved in depending solely on technological interventions in healthcare settings.

Measured values play a pivotal role in patients’ self-management strategies

Patients reported how they considered measured values as accurate reflections of their well-being. They stated that they used these values as indicators of their health status, with a strong belief in their precision. Several patients mentioned they had daily routines of measuring their oxygen levels as a proactive approach to understanding their condition. Some patients reported that if they detected even a slight deviation from the norm, such as lower oxygen levels or the presence of mucus, they adjusted their activities, accordingly.

I measure in the morning because then I know how I feel. If my oxygen is a little low or I’m snotty or something else, then I take it easy. (ID 5, 67 years).

Other patients described how they felt unwell, but if the measured values didn’t indicate that something was wrong, they accepted the condition and didn’t seek further help, despite experiencing a high symptom burden.

I was really sick. Then I talked to my doctor, and he said I will send someone out to you and take an infection blood test. Then he could see that there was no infection. That’s fine. Because then I am… well, there’s nothing wrong with me. So that’s just the way it is (ID 3, 67 years).

Overall, this trust in measured values seem to play a pivotal role in patients’ ability to manage their COPD and was crucial for whether the patients seeked help and support or simply accepted the condition, despite a high symptom burden and a feeling of being ill.

Patients blindly trust the medical technology

Patients rarely expressed doubts about the validity of the measured values. Instead, they were surprised when the numbers did not align with their subjective experience of their health.

A patient described a situation when her health deteriorated significantly, despite seemingly normal measurements: At the end of January, I got a huge pneumonia that was about to kill me. I couldn’t feel it coming, and the physicians were also surprised because I was oxygenating 96% and I had no fever. (ID 3, 67 years)

Some patients described how they had taught themselves how to manipulate the measurements through specific techniques and behaviors, aiming to achieve more favorable values without considering the correlation with their actual well-being. This behavior was seen as a success, reflecting the extent to which numbers influenced the patients’ perceptions of their health.

If my hands are cold, it may well be as low as 88. Then I sit and warm my hands and take it easy. And then I try again after 5–10 minutes, then it can be up to 92 and sometimes 94. (ID 1, 80 years).

However, the convenience of home measurements also had a downside as it made some patients acutely aware of the progression of their disease. Some patients expressed anxiety and discomfort when observing changes in their measured values over time.

It would just make me nervous because my oxygen uptake started at 98 and now it’s down to 92 and I don’t like that. (ID 7, 78 years).

Healthcare professionals’ skills and not the mode of contact matters to the patients

Patients described how the competencies and interpersonal skills of HCP were paramount, often outweighing the significance of the mode of contact, with some patients favoring virtual or telephonic consultations for their convenience. Furthermore, patients expressed a strong desire for increased access to support and information from the HCPs. However, they encounter obstacles in taking proactive steps within the fast-paced healthcare environment, such as difficulties in reaching out to HCPs and maneuvering through the system’s intricacies.

It is the content in the contact that matters to the patient

All patients emphasized the significance of knowing and establishing a relationship with the physicians and nurses they encounter at the respiratory outpatient clinic. This relationship and continuity instilled a sense of security in them.

It’s like with old friends, I almost said. We don’t have to talk about everything that is implied, and that means we can spend the time on other things. We can talk about what is important and develop good things together (ID 10, 59 years).

Patients described how the mode of contact—whether it’s through virtual consultations, phone calls, or in-person visits in the outpatient clinic—matters less.

Often when you know you have to talk to someone on the phone, it’s like you think a little more about the questions you need to ask - whereas when I’m in the hospital, I forget what I should have asked. I think I prepare more for a phone call (ID 11, 65 years)

In fact, several patients express a preference for virtual or phone consultations due to the convenience it offer in circumventing the logistical challenges associated with visiting the hospital. Some patients also experienced greater benefits from virtual consultations or phone calls because they found it easier to ask the questions that were important to them.

Directly asked if the patients might be interested in a home visit by an experienced pulmonary nurse rather than attendance at the hospital, almost all responded that they would see this as a positive thing - especially if it was coupled with the possibility of also having values checked.

That would be truly remarkable. It would spare me the inconvenience of stepping outside, while still ensuring that I’m under the care of the appropriate lung specialist. It would be reassuring to know that I could receive same-day service, especially during critical situations. If the situation were particularly severe, the possibility of receiving laboratory results on the same day would be a great relief. This would significantly enhance my peace of mind [ID 10, 59 years].

It is difficult for the patients to be proactive in a busy healthcare system

Patients expressed a desire for more opportunities to seek answers to their questions about their illness and found it challenging to navigate the complexities of the healthcare system on their own. They recognized the limitations of online information and emphasized the need for accessible and competent support.

I would call you [the outpatient clinic] if I had the opportunity. It would be liberating to be able to get answers to some of the questions I have about my illness. You can’t google everything (ID 11, 65 years).

Patients described how they wanted to be able to self-manage their disease and proactively react on early signs of deterioration. However, the patients experienced both internal and external barriers to being proactive. Contacting HPC with mere concerns or a sense of impending deterioration posed a challenge, as patients were aware that these concerns and experiences weren’t always taken seriously unless tied to abnormal values. In addition, patients also encountered difficulties in reaching the appropriate HCP within the outpatient clinic. Furthermore, patients were deeply concerned about not burdening the already busy healthcare system, as previously mentioned.

Discussion

This qualitative study sheds light on the challenges faced by patients with COPD in proactively self-managing their condition within a bustling healthcare system. Worldwide, the healthcare system is undergoing rapid changes to be able to manage the dual challenges of a growing elderly population with multiple chronic diseases and a shortage of skilled healthcare personnel to care for them. This situation is unlikely to improve in the near future; in fact, it may worsen. However, this prevailing narrative of a busy healthcare system and overworked HCP impacts the self-management strategies of patients with COPD and their interactions with the respiratory outpatient clinic as they are concerned about not disturbing unnecessarily.

It is well documented that patients with COPD often delay or hesitate to seek help due to stigma and the perception that the disease is self-inflicted [22–24]. Many patients with COPD therefore accept living with a high symptom burden and a reduced quality of life [5, 22, 25–27]. Thus, it can be assumed that patients with COPD are particularly susceptible to the dominant discourse about ‘the burdened health system that is on the verge of collapse’, a rhetoric that has only become sharper during the COVID-19 pandemic. It is therefore important that HPC in the respiratory outpatient clinics articulate and emphasize that patients with COPD do not disturb when they seek help regardless of the nature and severity of their symptoms.

Patients have learned to measure their values at home before contacting HCP, indicating a proactive approach to their disease self-management. However, this reliance on physical symptoms and measurements may limit the scope of care, as it does not take into account the holistic needs of the patients and may leave patients with untreated symptoms like anxiety, depression, fatigue etc [4, 5, 28, 29]. Previous studies within both COPD and cancer have illustrated how physical symptoms during hospitalization significantly more often are recognized and documented compared to psychological symptoms [30, 31]

Several instances were noted where the HCP’s focus on measurements seemed ritualistic and detached from the patients’ context and reality. The HCP’s focus on tasks rather than patients can be attributed to their busy schedules and high documentation requirements. Based on the patients’ statements, it can be inferred that a person-centred approach [32] is only possible if there is sufficient time. However, filling in questionnaires (CAT) and measuring lung function can be perceived as meaningless and without value, if the patients do not get involved in what is to be measured and how the measured values can be used. Patients seen in outpatient clinics often are in the last stages of the disease characterized by a high symptom burden and unmet palliative needs [3]. In a palliative context and busy healthcare system, it is worth considering whether it is necessary to always measure CAT and lung function, especially if patients do not see the value in it and if it means that it takes up time for the patients’ agenda and support needs.

It is experienced by some patients that measuring values is reassuring, at least in cases where the measured values can be interpreted as being good/stable. In contrast, it is perceived as unsafe by patients when the measured values show decreasing values and signs of disease progression, and some patients choose not to measure values and thereby avoid being confronted with disease worsening, a finding also described by Korpershoek et al. [33]. These findings have previously been described in the literature, but in a context where measurements were primarily offered in connection with outpatient controls or other medical visits [33–35]. Today, measuring equipment has become much more a part of everyday life and there is a growing market and increasing availability of various self-monitoring equipment. Patients with COPD are increasingly being provided with, or acquiring on their own, various telemonitoring equipment in connection with the introduction of virtual consultations. The implications for the daily lives of patients with COPD’, of being constantly able to ‘measure’ their condition, and the fact that these measurements are demanded by HCP and serve as the gateway to help/support, are not yet fully known [36].

Another issue is patients’ trust in the precision and accuracy of measuring equipment. It has not been possible to identify studies that investigate how patients relate to defective measuring equipment or equipment that measures incorrectly. It is not insignificant to investigate this, as it can potentially threaten patient safety if patients are only taught/instructed on how to use the measuring equipment but not trained in critical reflection in relation to the validity and reliability of the measured values - including how to react when there is a lack of alignment between measured values and self-perceived health/well-being.

Existing literature generally indicates a positive attitude toward health technology, such as telemonitoring and virtual consultations, among patients with COPD [35, 37]. However, the effectiveness of telemonitoring remains inconclusive, with varying opinions among patients and healthcare professionals [33–35]. A systematic review revealed that 45% of studies reported improved patient outcomes with telemonitoring, while 38% reported no improvement. Identified facilitators included reduced need for in-person visits, improved disease self-management, and enhanced patient-provider relationships, while barriers encompassed low-quality data, increased provider workload, and higher costs [38]. These findings suggest that health technology and telemonitoring of patients with COPD present both advantages and disadvantages with perceptions varying between patients and HCP. Our study aligns with existing literature, indicating that patients do not view the replacement of physical checkups with virtual consultations and self-monitoring as a quality deterioration. Instead, patients prioritize continuity, specialized pulmonary medical knowledge, and a strong relationship with HCP.

Limitations and strengths

This study has certain strengths and limitations that should be acknowledged. The research group, experienced in respiratory care, conducted continuous discussions and separate analyses, ensuring researcher triangulation and enhancing the study’s quality. This way of working and analyzing strengthens the quality due to researcher triangulation [39]. However, it is a weakness that there has been no Patient and Public Involvement, either in the design of the study or in the development of the interview topic guide.

This study had a particular focus on patients’daily life and their interactions with the respiratory outpatient clinic. However, descriptions of the patients’ daily lives were less prevalent in the interviews than anticipated, and consequently the patients’ interactions with the outpatient clinic are more prominent than descriptions of daily life in both the results and discussion sections, which could be considered a limitation.

It may be considered a weakness that we have utilized convenience sampling in our study, as this approach carries a risk of bias. This is due to the possibility that the informants included may represent a specific subgroup, thus potentially portraying a distinct perspective that might not fully encapsulate the broader experiences or views of all individuals within the studied population.

The participants were recruited from a single outpatient clinic in the capital region of Denmark. Therefore, local, regional, and national peculiarities may influence the interpretation of our results.

Patients with advanced COPD are characterized by a high symptom burden and severe breathlessness [23]. Therefore, it can be challenging and resource-intensive for them to speak for extended periods, and interviews with patients with advanced COPD will often be of shorter duration as a result. Our interviews lasted an average of 37 min, which is considered a strength and interpreted as a sign that the patients had experiences and thoughts they wanted to share. As a result, we obtained rich data, and consistent themes/information power were identified through the analysis, as there was a high degree of consensus among the patients [36]. Furthermore, the study’s focus is solely on interactions with a respiratory outpatient clinic, excluding patients’ interactions with other healthcare services. The aforementioned limitations should be considered when interpreting the results.

Conclusions

HPC should be aware that the rhetoric surrounding the busy healthcare system and stressed HPC also affect patients. Patients with COPD may be particularly sensitive to this message and try to avoid burdening the healthcare system further by setting their own needs aside. However, this approach can lead to neglecting symptoms of deterioration and mental symptoms, which increase the risk of disease progression and subsequent risk of hospital admission. While some patients have developed strategies to navigate the busy healthcare system there is a clear need for a more patient-centred approach that considers the full range of physical, mental, and social factors affecting patients with COPD’ ability to selfmanage their condition. Future research should explore ways to bridge this gap and improve the support available to patients with COPD within our current healthcare system.

Disclosure statement

The authors report no competing interests to declare.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.