Daily Impact of COPD in Younger and Older Adults: Global Online Survey Results from over 1,300 Patients

Abstract

The daily impact of chronic obstructive pulmonary disease (COPD) on younger patients is often underappreciated. To assess this, we investigated the disease burden experienced by younger and older patients. A panel of questions was developed in conjunction with the European Federation of Allergy and Airways Diseases Patients’ Associations and Boehringer Ingelheim. The online survey was conducted by Instar Research. Data were collected from eight countries in Europe, plus China, Japan and the United States. All patients were receiving COPD maintenance therapy. Patients were stratified by age (45–54, 55–64, ≥65 years). Data were analyzed from 1,375 patients from Europe (925), China (150), Japan (100) and the US (200); 365 were aged 45–54, 440 aged 55–64, and 570 aged ≥65 years. Mean age was 61.8 years; 771 (56%) were male. A significantly higher proportion of patients aged 45–54 years reported “poor” or “very poor” wellbeing (35% vs. 28%; p < 0.05) and “high impact” on 8 of the 11 daily activities and requirements for adjusting activities assessed (all p < 0.05), compared with patients aged ≥65 years. Significantly more patients aged 45–54 versus ≥65 years associated their COPD with feeling “anxious”, “stressed”, “sad”, or “overwhelmed” (all p < 0.05). Younger patients with COPD reported a higher impact on their daily activities, wellbeing and requirement for adjusting their activities due to their symptoms than older patients. Our findings highlight the importance of optimizing treatment for younger patients with COPD and suggest that clinicians should not overlook the burden of disease in these patients.

Graphical Abstract

Keywords:

• COPD
• survey
• age
• wellbeing
• daily activities

Introduction

Patients living with chronic obstructive pulmonary disease (COPD) experience a considerable burden of disease, the daily impact of which is often underappreciated [1–4]. In addition, clinicians may intuitively expect COPD to have more impact on the daily lives of older patients. Traditionally, more focus has been given to older patients with COPD, who are expected to have worse lung function [5], more comorbidities [6], and poorer interoception [7]. Although COPD is generally considered to be a disease of later years, estimates suggest that over 50% of those with COPD (Global Initiative for Chronic Obstructive Lung Disease [GOLD] stage 2 or higher) are aged <70 years [8]. In addition, national estimates for the prevalence of COPD in the United States (2014–2015) report that 5.9% of adults aged 18 years or older had been told by their healthcare professional that they have COPD, rising to 6.5% of those aged 45–55 years, 9.6% of adults aged 55–64 years, and 12.5% of adults aged ≥65 years [9]. Despite this, the younger COPD population has not been well described [10], and little is known about the relative impact of COPD symptoms on patients of different ages and their daily activities.

COPD is associated with significant reductions in quality of life, even among patients with milder disease [11]. A poor quality of life in COPD patients has been associated with high levels of dyspnea [12], physical impairment [12], depression [13], anxiety [13], readmission to hospital [14], and an increased risk of death [15]. A clear understanding of how the quality of life of patients is affected by COPD is therefore key to improving disease prognosis. Several surveys have evaluated how patients perceive different aspects of their disease [1–4,16–20]. However, the majority of these have included a high proportion of older, non-working patients, and few have considered the impact of COPD on younger patients.

As well as a lack of survey data on younger patients with COPD, there is notable precedent for focusing on this population. A study by Sanchez-Salcedo et al. reported that younger patients with COPD displayed a similar severity distribution and progression of disease compared with older patients [10]. These findings suggest that the severity of COPD is already established at a young age and that patients maintain their disease trajectory over time, highlighting the importance of early treatment optimization for younger patients. In addition, a cross-sectional analysis of COPD patients from the Genetic Epidemiology of COPD (COPDGene) study and the Subpopulations and Intermediate Outcome Measures in COPD Study (SPIROMICS) showed that younger patients (50–64 years) have worse health-related quality of life versus older patients (65–80 years), potentially due to a higher impact of dyspnea [21]. Younger age has also been identified as a risk factor for concomitant anxiety and depression in patients with COPD [13].

The primary aim of our survey was to assess the impact of COPD on patients’ lives and investigate the disease burden experienced by younger and older patients. We aimed to explore differences between younger and older adults living with COPD and to evaluate patient attitudes toward how they are able to manage their symptoms, as well as their experience and attitudes regarding education and support.

Materials and methods

Patient population and recruitment to survey

Patients with COPD were recruited from Europe (Denmark, France, Germany, Italy, The Netherlands, Poland, Spain and the UK), China, Japan, and the United States. Patient recruitment and survey distribution were conducted by Instar Research. The survey was distributed to potential respondents from both Instar Research and Instar Research partner panels, all of whom had previously opted in for market research surveys relating to COPD. Enrollment into these patient panels was by invitation only or by open enrollment campaigns, including online and offline marketing, such as via social networks, web and SMS databases. There was no sponsorship involvement in setting up the patient panels, and patients entering these panels were required to agree to the panels’ terms and conditions prior to enrolling.

Surveys were conducted between 17th September and 27th November 2019 for patients recruited from Europe, China and Japan, and between 23rd January and 30th January 2020 for patients from the US. Before taking part, survey participants were reminded that all responses would remain confidential and that all data would be reported for groups and not for individuals (i.e. not in a manner that would allow any identities to be disclosed). Patients were required to be aged ≥45 years, and to have been prescribed an inhaler therapy as a treatment for their COPD and to use it regularly. Patients were excluded if they had a diagnosis of asthma. Notably, Internet access was a requirement to complete the online surveys; however, this did not necessarily have to be at home.

Survey questionnaire

A scientific steering committee was established in July 2019 to provide input into the development of the survey, and to provide independent advice and recommendations to strengthen the patient survey study. The steering committee comprised leading scientific experts in respiratory medicine and COPD and a patient advocacy group representative, and was conducted in adherence to industry regulations on the cooperation of the pharmaceutical industry with these medical professions.

A panel of questions was developed in conjunction with steering committee members, the European Federation of Allergy and Airways Diseases Patients’ Associations, and Boehringer Ingelheim. The survey included a mixture of single and multiple response questions, as well as scalar items. Eight screening questions were included to establish patient demographics and characteristics. The following question was used to define COPD: “Which, if any, of the following conditions have you been diagnosed with by a healthcare professional? (Please select all that apply)”. The options available were “COPD (including emphysema and chronic bronchitis)”, “asthma” and “none of the above”. Where patients selected COPD as the only option, this was defined as a diagnosis of COPD. Demographic information was self-reported. The impact of COPD on overall wellbeing, daily activities and requirements for adjusting activities due to symptoms, and feelings was assessed in four questions. The questions on daily activities and requirements for adjusting activities included 12 subquestions; patients responded using a 5-point scale, where 5 indicated a greater impact on their lives and 1 suggested minimal impact. For the question on feelings, patients were asked to select up to 5 words that they associated with their disease. The questions on overall wellbeing, daily activities and feelings were similar to, but not based on, those included in well-established questionnaires, such as part 2 of the St. George’s Respiratory Questionnaire [22], the 36-Item Short Form Health Survey [23], the McGill COPD Quality of Life Questionnaire [24], and the Living with COPD questionnaire [25].

The perception of current treatment and difficulties was assessed in 12 questions. Patient experiences of treatment initiation and training were assessed in five questions. A further eight questions assessed which information sources patients used to access information about their COPD, as well as further patient demographics. The language of the survey was country-specific.

Data collection and management

The survey was conducted by Instar Research according to the Insights Association Code of Standards and Ethics for Marketing Research and Data Analytics/European Market Research Association Code of Conduct. The survey did not require ethics committee approval. The online survey was distributed to potential respondents through Instar’s secure Internet portal via unique links to the survey, with an estimated completion time of 15 min. Data were collected on Instar’s secure server and are only accessible to the Instar team. The data will be stored indefinitely unless there is a specific request for them to be deleted after a defined period of time, as per the terms and conditions of any master services agreement.

Statistical analysis

IBM^® SPSS Statistics was used by the Instar research team for analysis of the collected survey data. Data presented here are descriptive, proportional or mean unless otherwise stated. Where statistical comparisons were conducted, these were performed using z-tests.

Results

Patient demographics

Data from 1,375 patients who completed the survey are available, including 925 patients from Europe, 150 from China, 100 from Japan and 200 from the US. Overall, the mean age of respondents (±standard deviation) was 61.8 years (±9.4) (Table 1), and 771 (56%) were male. Of the respondents, 365 were aged 45–54 years, 440 were aged 55–64 years, and 570 aged ≥65 years (Table 1). More patients in the 45–54 years age group were in full-time or part-time work (78%), compared with patients aged 55–64 years (43%) and ≥65 years (11%). Across all ages, the majority of patients lived with others (76%) and the majority of patients had completed higher education (69%). Patient demographics by country are provided in supplementary material Table 1.

Table 1. Patient demographics by age.

	All patients (N = 1,375)	45–54 years (n = 365)	55–64 years (n = 440)	≥65 years (n = 570)
Mean age, years (SD)	61.8 (9.4)	49.9 (3.0)	59.8 (2.9)	71.0 (4.8)
Males, n (%)	771 (56)	181 (50)	228 (52)	362 (64)
Working status, n (%)
Full-time	411 (30)	241 (66)	145 (33)	25 (4)
Part-time	126 (9)	45 (12)	46 (10)	35 (6)
Retired	661 (48)	27 (7)	147 (33)	487 (85)
Not working	153 (11)	45 (12)	85 (19)	23 (4)
Prefer not to say	24 (2)	7 (2)	17 (4)	0 (0)
Living status, n (%)
Alone	329 (24)	63 (17)	93 (21)	173 (30)
With others	1,040 (76)	299 (82)	344 (78)	397 (70)
Prefer not to say	6 (0)	3 (1)	3 (1)	0 (0)
Highest level of education completed, n (%)
Secondary school/high school or less	410 (30)	96 (26)	136 (31)	178 (31)
Higher education^a	952 (69)	267 (73)	296 (67)	389 (68)
Prefer not to say	13 (1)	2 (1)	8 (2)	3 (1)

^aHigher education includes technical school/college, some university, university degree, Masters or PhD.

SD, standard deviation.

The impact of COPD on overall wellbeing and daily activities

The impact of COPD on overall wellbeing and daily activities was similar between male and female respondents, and is not reported here. Overall wellbeing was assessed using a 5-point scale, where 5 indicated “very good” wellbeing and 1 indicated “very poor” wellbeing. Overall, reported mean (± standard error) wellbeing was lower in the younger age groups (45–54 years: 2.93 [±0.05]; 55–64 years: 2.92 [±0.04]) versus the older age group (≥65 years: 3.02 [±0.04]). In total, 35% (128/365) of patients aged 45–54 years reported “poor” or “very poor” wellbeing compared with 28% (157/570) of patients aged ≥65 years (p < 0.05) (Figure 1). Of the patients aged 55–64 years, 31% (138/440) reported “poor” or “very poor” wellbeing. When assessing by country, in general, a higher proportion of respondents in Italy, Spain and Japan rated their overall wellbeing as poor or very poor (42%, 42% and 47%, respectively), which was higher than the average across all countries (31%) (supplementary material Table 2).

Figure 1. Overall wellbeing in all patients and by age. *p < 0.05. Statistical significance is shown for comparison of the two age groups.

When assessing impact on daily activities or requirements for adjusting activities, the impact of COPD on patients’ lives in the total population was variable across the 11 assessed criteria (Figure 2). By age, significantly more younger patients (45–54 years) reported “high impact” (extremely or very impactful) compared with older patients (≥65 years) for “tasks around the home” (27% vs. 18%; p < 0.05), “tasks outside the home” (37% vs. 22%; p < 0.05), “taking care of yourself” (16% vs. 9%; p < 0.05), “ability to spend time with loved ones” (21% vs. 15%; p < 0.05) and “traveling long distances to see friends and family or go on vacation” (38% vs. 18%; p < 0.05) (Figure 2). Regarding impact on adjusting their daily activities, compared to patients in the ≥65-year age group, significantly more patients aged 45–54 years reported “frequent” or “constant” needs (“high impact”) to “plan their day around periods of breathlessness and/or coughing” (41% vs. 19%; p < 0.05), “take breaks or pace oneself when doing activities” (52% vs. 42%; p < 0.05) or “stop due to breathlessness or coughing” (44% vs. 32%; p < 0.05) (Figure 2). For patients aged 55–64 years, the proportion of respondents reporting “high impact” on daily activities or requirements for adjusting their daily activities was between that observed for patients aged 45–54 years and aged ≥65 years for 8 of the 11 assessed criteria. By country, across the 11 criteria assessed, respondents in Germany, Spain and the United Kingdom reported being “very” or “extremely” impacted by their COPD more often than all other countries (supplementary material Table 3).

Figure 2. Impact of COPD on daily activities and requirements for adjusting daily activities in all patients surveyed and in younger versus older patients. *p < 0.05. Statistical significance versus patients aged ≥65 years. ^aHigh impact was defined as being “extremely” or “very” impacted, moderate impact was defined as being “somewhat” impacted, and low impact was defined as being “slightly” or “not at all” impacted. ^bHigh impact was defined as “constantly” or “frequently” needing to make the adjustment, moderate impact was defined as “occasionally” needing to, and low impact as “rarely” or “never” needing to. COPD, chronic obstructive pulmonary disease.

Patients’ feelings toward their COPD

Overall, respondents reported predominantly negative feelings about their COPD (Figure 3 and supplementary material Table 4). Younger patients (45–54 years) reported feeling “stressed” and “overwhelmed” 1.7 and 2.2 times more frequently than older patients (≥65 years) (p < 0.05), respectively; patients aged 55–64 years also reported feeling “stressed” and “overwhelmed” more frequently (1.4 and 1.7 times, respectively) than older patients (p < 0.05) (supplementary material Table 4). Significantly more younger patients also reported feeling “anxious” (p < 0.05) and “sad” (p < 0.05) than older patients, whereas more older patients reported feeling “annoyed” (p < 0.05) (Figure 3 and supplementary material Table 4). More older patients (≥65 years) also reported feeling “uncertain”, but also “relieved” and “optimistic”, compared with younger patients (45–54 years); however, this result was not statistically significant. No major variations by country were identified regarding patient feelings about their COPD (supplementary material Table 5).

Figure 3. Patient feelings toward their COPD. Results are displayed for all patients surveyed and for younger versus older patients. *p < 0.05. Statistical significance is shown for comparison of the two age groups. COPD, chronic obstructive pulmonary disease.

Patient attitudes toward their treatment and treatment management

When asked what consequences struggling to inhale medication from an inhaler device has had, a significantly higher proportion of younger patients (45–54 years) versus older patients (≥65 years) reported concern about their ability to control their symptoms (48% vs. 21%; p < 0.05), feeling panicked about their condition (32% vs. 8%; p < 0.05), not leaving the house in case symptoms got worse (30% vs. 8%; p < 0.05) and calling their doctor/nurse (18% vs. 6%; p < 0.05). When thinking about key benefits of their medication, in terms of perceived burden of disease, 62% of all patients surveyed reported feeling less breathless. However, less than half reported other benefits, including participating in daily activities (45%), having symptom-free days (34%) and participating in physical activities (31%). Significantly more younger patients than older patients reported benefits in participating in daily activities (55% vs. 40%; p < 0.05), having symptom-free days (40% vs. 28%; p < 0.05) and participating in physical activities (35% vs. 28%; p < 0.05); the proportion of patients aged 55–64 years that reported benefits was between that observed for patients aged 45–54 years and ≥65 years (45%, 37%, and 32%, respectively).

When asked about which healthcare professional they primarily speak to about their inhaler device, 83% of all patients surveyed reported speaking to their physician about their inhaler device, whereas 7% reported speaking to a nurse or physician's assistant, and 2% to a pharmacist or pharmacist's assistant. Significantly more patients in the younger age group (45–54 years) reported speaking to their physician versus older patients (≥65 years) (89% vs. 78%; p < 0.05) and versus patients aged 55–64 years (83%; p < 0.05). Moreover, 38% of patients did not speak to a healthcare professional the last time they had an issue with their inhaler. Younger patients (45–54 years) reported speaking to their healthcare professional more frequently than older patients (≥65 years); significantly more younger patients versus older patients speak to their healthcare professional every time they see them about other inhaler therapy options (32% vs. 19%; p < 0.05), whereas significantly less younger patients rarely (9% vs. 26%; p < 0.05) or never (8% vs. 18%; p < 0.05) speak to their healthcare professional about this (Figure 4(a)). Of the patients aged 55–64 years, 20% reported speaking to their doctor every time they see them about other inhaler therapy options, whereas 33% reported rarely or never speaking to their doctor about this.

Figure 4. Patient attitudes and preferences toward information on their inhaler device and COPD management. (a) How often patients asked their healthcare provider about other inhaler therapy options and whether patients were interested in follow-up training on their inhaler device, and (b) patient preferences for information or support to better manage their inhaler device. *p < 0.05. Statistical significance is shown for comparison of the two age groups. COPD, chronic obstructive pulmonary disease.

Patient attitudes toward education, training and resources

In terms of training on how to use their inhaler device, most respondents received training from their physician (66%). Of those patients who received training on their inhaler device, most have not received any subsequent training (72%). Significantly more younger (45–54 years) versus older patients (≥65 years) were interested in follow-up training (55% vs. 20%; p < 0.05; Figure 4(a)). Conversely, significantly more patients in the older versus younger age group reported that they did not need any other information or support to help manage their inhaler device (58% vs. 18%; p < 0.05). A significantly higher proportion of younger versus older patients wanted information or support to better manage their inhaler device, including from a healthcare professional (44% vs. 18%; p < 0.05), instructional leaflet (36% vs. 16%; p < 0.05), website (22% vs. 15%; p < 0.05), phone number to call to ask questions (28% vs. 11%; p < 0.05), online instructional videos (25% vs. 10%; p < 0.05) and a way to message questions from a mobile phone (15% vs. 6%; p < 0.05) (Figure 4(b)). Of the patients aged 55–64 years, 31% were interested in follow-up training, but 40% felt they did not need any other information or support to help manage their inhaler device. In terms of information sources about COPD management, most patients received information from their physician (69%), an instructional leaflet (26%) or a brochure (21%); 69%, 21% and 26% of patients, respectively, reported that they would like to receive information in this way. Findings were similar between younger and older patients in terms of information sources most commonly used or preferred.

Discussion

The results of this survey, which included patients from Europe, the US, China and Japan, highlight the impact that COPD can have on the daily lives of patients. However, the most interesting finding is that it is younger patients who feel most impacted by their COPD and need to adjust their daily activities accordingly. This result may be surprising to some clinicians, who might expect COPD to have more of an impact on older patients. Our findings also show that younger patients display the most information-seeking behavior, suggesting that they would like to receive more guidance and attention from clinicians. These findings are of great clinical relevance, highlighting the importance of early detection of and treatment optimization for COPD.

Several surveys have been conducted in patients with COPD to identify their perception of different aspects of the disease, including on their quality of life and understanding of the disease [1–4,16–20]. Most of these surveys have predominantly included older, non-working patients with COPD. Despite estimates that over 50% of those with COPD (GOLD stage 2 or higher) are aged <70 years [8], as well as the lack of knowledge about younger patients with COPD, few studies have considered the impact on this important patient population.

Our survey shows that compared with older patients (≥65 years), significantly more younger patients reported “poor” or “very poor” wellbeing. In addition, across the 11 criteria we assessed, more younger patients reported high/moderate impact on their daily activities and requirements for adjusting their activities due to their symptoms. This pattern could be due to younger patients having higher expectations of life and hence feeling the greatest impact of their disease; although younger patients are likely to have received a more recent diagnosis, older patients may be more conditioned to the challenges associated with their disease and in using their inhaler device. Our findings reflect those of previous studies in working-age patients [3]. In a cross-sectional survey of working-age patients (45–67 years), Fletcher et al. described a significant personal, economic and societal burden on patients, with a high proportion reporting that their COPD forced them to stop work or made it difficult to maintain their activity levels outside of work [3].

The psychosocial impact experienced by patients is also evident from our survey, with respondents reporting annoyance, anxiety, stress, uncertainty, sadness and being overwhelmed as the most common feelings they associate with their COPD. Furthermore, it is again younger patients who were more likely to report these negative feelings than older patients, except for annoyance and uncertainty, which older patients were more likely to report. Similarly, in an online survey of 500 patients from the UK (aged <35–>81 years), respondents reported stress, worry and depression or low mood because of their COPD [18]. These data should encourage healthcare professionals to ask patients about their feelings toward their COPD, to provide information on emotional/wellbeing support, to use patient-reported outcome measures and, where necessary, to consider psychologic assessments, especially for younger patients.

The bulk of COPD therapies are inhaled; however, the inhalation of medicine from an inhaler device can present challenges for some patients with COPD [17,19]. In our survey, more younger patients reported concerns associated with struggling to inhale medication from an inhaler device. Interestingly, although younger patients have the most concerns and are most impacted by their COPD, they report that their inhaler therapy provides more benefits to their perceived quality of life compared with older patients. This finding suggests that although younger patients feel more impacted, they do experience treatment benefits. One possible explanation is that younger patients may have more scope for potential improvements versus older patients. Another possibility is that younger patients who are more concerned about their quality of life compared with older patients may be more likely to notice or report any changes. Conversely, older patients with COPD may struggle to identify changes in their quality of life. In line with this suggestion, previous studies have reported that many older patients with COPD neither monitor, nor report their symptoms, which may be linked to poorer interoception and symptom recognition in older patients [7].

This study also shows that younger patients display more information-seeking behavior compared with older patients regarding the management of their COPD, asking about their inhaler device more often and registering greater interest in information, support and follow-up training on their inhaler device. These behaviors highlight a significant unmet need to provide more support to younger patients. While attitudes in clinical practice may be that older patients need more support, overall this study suggests that clinicians may need to rethink such attitudes and focus on young patients more. Our findings for patients aged 55–64 years were generally between those of the younger and older patients in terms of the impact of COPD on overall wellbeing, daily activities and their feelings, as well as their attitudes toward treatment management and education.

The results of the survey show that physicians are, by far, the most trusted resource for patients about treatment choices for their COPD, inhaler device training and information about COPD management. Despite patients engaging in discussions with their physicians, our results suggest that many remain unclear about how to optimally manage their COPD, with less than half of all patients reporting treatment benefits beyond feeling less breathless. A number of previous surveys have found patients to have limited knowledge on COPD itself, and have stressed that better patient education is needed [4,16,19,20]. Patient engagement with their treatment is an important aspect of clinical care in COPD, whereas adherence to medication is influenced by the quality of communication between patients and healthcare providers; as such, better overall communication is associated with improved adherence [18]. Together with our findings, this reinforces the importance of educating patients on optimal disease management and the full benefits that may be obtained from their treatment, as well as the importance of frequent checkups. Our findings also highlight the potential role that other healthcare professionals (e.g. nurses, physician’s assistants and pharmacists) could play in addressing this information gap if patient attitudes toward preferences changed. Notably, changing such attitudes may require a significant effort to encourage patients to engage with other healthcare professionals other than physicians.

A key strength of the present survey is the high number of survey respondents from multiple countries. In particular, the relatively high numbers of younger patients (45–54 years) that were surveyed was an advantage of this study, having been assessed in very few trials. There were also some limitations of the survey. For instance, there was potential for self-selection bias, firstly through patients opting to be part of a patient panel and secondly through their decision to participate in the survey. In addition, the requirement for Internet access to complete the online survey likely limits the survey population to those who routinely use the Internet. The survey population is, therefore, unlikely to be truly representative of the general COPD population (responses were not filtered in any way to ensure they were representative of the broader COPD population). For example, you may expect that patients participating in such a survey may be more adherent and knowledgeable about their COPD. Indeed, the survey population described here has a relatively high educational level versus that of a previously reported randomly selected survey population [26]. A further limitation is that the survey did not capture disease severity, COPD duration, or the prevalence and impact of comorbidities, which would have helped provide context and deeper insight to the findings. Although often associated with older age, recent studies have shown frailty to be significantly associated with mortality in middle-aged (45–65 years) individuals with multimorbidity [27]. Furthermore, a greater relative impact on all-cause mortality has been reported in middle-aged (37–59 years) versus older (60–73 years) individuals with multimorbidity [28]. Similar to our findings on the impact of COPD, these studies highlight the importance of not overlooking younger patients; future studies to better understand the impact of comorbidities in younger patients with COPD would be valuable.

Whilst accepting there are some weaknesses and potential bias inherent to the market research nature of this survey, we do not believe this invalidates our results. The methods adhered to strict codes of conduct, set out in the IA Code of Standards and Ethics for Marketing Research and Data Analytics [29]. These aim to protect survey respondents and the data they provide by: i) respecting the data subjects and their rights as specified by law and/or by this Code; ii) being transparent about the collection of personally identifiable information (PII), only collect PII with consent, and ensure the confidentiality and security of PII; iii) acting with high standards of integrity, professionalism and transparency in all relationships and practices; and iv) complying with all applicable laws and regulations, as well as applicable privacy policies and terms and conditions that cover the use of subjects’ data. In terms of publishing market research, the ethics codes require the same level of transparency and responsibility as outlined in Good Publication Practice guidelines [30], whereby researchers must ensure that published results are not misleading and conclusions are adequately supported by the data. Here we have adhered to such guidance and present this study in order to provide insights into COPD patients’ beliefs and concerns.

Conclusions

Overall, the results of our survey highlight the substantial physical and psychosocial impact that patients with COPD experience. Patients are required to adjust their normal daily activities, are greatly impacted in terms of wellbeing, and associate predominantly negative feelings with their COPD. This survey also unearths a hidden unmet need in younger patients who experience a higher impact compared with older patients. This finding may have implications for clinical practice, suggesting that younger patients with COPD need more assistance and that clinicians should not overlook the burden of disease in these patients.

Acknowledgments

The authors posthumously acknowledge the contribution of Hubert Nettle, who was an original member of the steering committee and representative of the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA).

Declaration of interest

R. Dekhuijzen reports personal fees from AstraZeneca, Boehringer Ingelheim, Chiesi, Mundipharma, Mylan, Sandoz, Teva, Trudell Medical and Zambon, and reports grants and fees for presentations and scientific advice from Boehringer Ingelheim. N. Hass and J. Liu have nothing to disclose. M. Dreher has received speaker fees and fees for advising from Boehringer Ingelheim.

Data availability

The data sets used and analyzed during the current study are available from the corresponding author on reasonable request.

Additional information

Funding

Medical writing assistance, in the form of the preparation and revision of the manuscript, and Rapid Service Fee were supported financially by Boehringer Ingelheim and provided by Vicki Cronin, PhD, of MediTech Media under the authors’ conceptual direction and based on feedback from the authors.