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Abstract
Objectives This qualitative study aims to identify patient-reported barriers to treatment for neovascular age-related macular degeneration (nAMD) and investigate their impact on quality of life.
Design Using a qualitative explorative design.
Setting Semi-structured individual or dyadic interviews were conducted with patients and their relatives.
Participants Twenty-one patients completed the interview, with four of them having a relative present.
Interventions Gadamer’s hermeneutics guided the epistemological approach, and maximum variation sampling was employed to capture diverse patient experiences. An advisory board consisting of patients, relatives and ophthalmologists ensured the relevance of the study. Thematic analysis was conducted using NVivo software.
Primary and secondary outcome measures To investigate patient-reported barriers to the recommended treatment for nAMD and impact on quality of life.
Results The study included 21 patients with nAMD, with a median age of 79 years. Five themes emerged: (1) good compliance with intravitreal treatment, (2) the dual role of relatives, (3) treatment commute, (4) hospital barriers, (5) preventive health literacy.
Conclusion This study highlights the resilience and adherence of patients with nAMD in Denmark to their treatment despite various barriers. While the therapy may have negative effects on their well-being, patients do not opt out of treatment. These findings underscore the importance of personalised treatment plans that provide, for example, convenient access to care and clear future agreements at the hospital. By adopting more patient-centred approaches, healthcare providers can enhance patient satisfaction and improve treatment adherence, ultimately leading to better patient outcomes and quality of life.
- ophthalmology
- medical retina
- epidemiologic studies
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
To enhance the trustworthiness of the study, we employed various techniques, including investigator triangulation.
The qualitative nature of the study enabled a detailed exploration of patients’ perspectives, which may be challenging to capture using quantitative approaches.
Purposeful sampling aimed to achieve maximum variation, allowing for a diverse range of neovascular age-related macular degeneration experiences, but the findings are not generalisable due to the small sample size and qualitative nature of the study.
An advisory board including patients and caregivers provided valuable insights on barriers faced by patients and the public, based on their first-hand experiences.
Introduction
Neovascular age-related macular degeneration (nAMD) is the main cause of irreversible vision impairment and blindness among elderly in the Global North.1 In Europe, approximately 15 million patients suffer from nAMD. With the increase in life expectancy, it is expected that the number of nAMD cases will rise, and by the year 2050, around 6.4 million patients worldwide will be diagnosed with nAMD.2–5
nAMD primary targets the macula resulting in central vision loss and distorted images for affected patients. As the condition’s name implies, nAMD is closely linked to the ageing process, with its prevalence rising from 3.5% in individuals aged 55–59 to 17.6% in those aged 85 years and older.6
The introduction of intravitreal angiostatic therapy (vascular endothelial growth factor (VEGF) inhibition) in 2006 has revolutionised the treatment of nAMD, resulting in a significant reduction in new cases of blindness among individuals over 50 years old.7 8 However, this treatment often requires continuous treatment and monitoring for years, which can pose challenges for elderly and visually impaired patients. In Denmark alone, approximately 14 000 patients are in treatment for nAMD.9 A study revealed that up to 20% of patients opted out of treatment within the first 2 years for non-medical reasons.10 The reasons behind patients discontinuing treatment remain unknown. A global survey found that 84% of patients treated with intravitreal VEGF inhibitors were compliant with treatment, while the reasons for non-compliance were unclear.11 Furthermore, a study reported scenarios where patients would consider stopping nAMD treatment, including a perceived lack of treatment effectiveness, side effects outweighing benefits, changes in reimbursement and difficulties related to transportation.4
Although it is known that some patients with nAMD do not adhere to the recommended treatment regimen, there is limited understanding of the factors contributing to their discontinuation or omission of treatment. This is especially relevant in a country like Denmark, where treatment is tax funded, unlike in other countries where patients are more aware of the cost.4 Barriers such as insufficient knowledge about the disease and treatment, long travel distances to the hospital, or frequent hospital visits may contribute to this issue. It is crucial to gain a comprehensive understanding of the patient population and address this knowledge gap by exploring the specific barriers they face during treatment.
The objective of this qualitative study was to investigate patient-reported barriers to the recommended treatment for nAMD and their impact on quality of life.
Materials and methods
Study design
A qualitative exploratory design was employed to gain insight into the patient’s perspective on the treatment of nAMD, according to the pre-planned study protocol (online supplemental material 1). This involved conducting semi-structured interviews with individual patients (n=17) or with patients and their relatives in a dyadic setting (n=4). The chosen approach aimed to capture the subjective experiences and viewpoints of the patients.
Supplemental material
The research methodology was influenced by Gadamer’s hermeneutics, an epistemological framework. The primary investigator (PI), who conducted the interviews, used own pre-existing understanding and knowledge to interpret the data. The process of interpretation involved a dynamic interplay between new insights gained from the interviews and the PI’s existing understanding, forming a circular motion known as the hermeneutical circle.12 The PI, a doctor specialising in ophthalmology with several years of clinical experience, brought a unique sensitivity to the patients’ perspective, ensuring a comprehensive understanding of their experiences. The PI sought to address the potential risk of agreement that can arise from several years of clinical experience, aiming to prevent any hindrance in the research process.
Patient and public involvement
To ensure the relevance and applicability of the study with patient and public involvement (PPI), a continuous advisory board was established. This board consisted of five individuals currently undergoing treatment for nAMD and three ophthalmologists. Moreover, three out of five patients in the PPI had their close relatives present at the meetings, providing valuable insights from multiple perspectives.
Throughout the research process, the PPI offered feedback on various aspects of the study, including the development of the study guide, the understanding of the transcribed interviews and the analysis process. Their contributions helped ensure that the research effectively captured the patient’s viewpoint and addressed the concerns and needs of both patients and the broader public.
Everyone involved in the study will receive an orientation on the study results as soon as they are published.
Recruitment and selection
The study participants consisted of patients diagnosed with nAMD (n=21), and in some cases, their close relatives also participated (n=4). The decision to have a relative present during the interview was left to the patients’ discretion, but it was not mandatory. The intention behind conducting dyadic interviews, involving both the patient and their relative, was to leverage the synergistic effect of two individuals who had experienced the treatment process from different perspectives. This approach allowed them to complement and enhance each other’s insights during the interview.
Data saturation was achieved after conducting 21 interviews, indicating that further interviews were unlikely to yield substantially new information or insights.13 This sample size was deemed sufficient to capture the range of patient perspectives and experiences related to the treatment of nAMD.
To ensure a comprehensive exploration of the topic, we employed a purposive sampling method known as maximum variation sampling or heterogeneous sampling. This approach aimed to provide greater insights into the patient experience of nAMD treatment by considering a diverse range of perspectives. The inclusion criteria required participants to be diagnosed with nAMD, be aged 60 years or older and receive intravitreal VEGF inhibition treatment at either Odense University Hospital (OUH) or Zealand University Hospital, Roskilde (ZUH).
To achieve maximum variation in the study sample, we included patients from various geographical locations, such as two out of five regions in Denmark, ensuring diversity in terms of distance from the hospitals. We also considered medical aspects, including the time since diagnosis and the severity of the disease or visual impairment. Furthermore, we took into account various social aspects, such as whether participants lived alone or were married. Exclusion criteria were moderate and severe dementia or the inability to provide written consent. Patients with nAMD were recruited with the assistance of nurses at the Departments of Ophthalmology at OUH and ZUH or through posters displayed at OUH. Additionally, two patients were recruited through snowball sampling, a method where existing participants refer other potential participants for inclusion in the study.
Data generation
Interviews were conducted between March 2022 and December 2022. These interviews took place either face-to-face at the hospital (n=12) or over the telephone (n=9). To guide the interviews, a semi-structured interview guide was collaboratively developed in consultation with the PPI board (online supplemental material 2). This guide incorporated themes identified in the existing literature as well as topics deemed important by the PPI board members.
Supplemental material
All interviews were digitally recorded to ensure accurate capturing of the participants’ perspectives. Before proceeding with the main interviews, three pilot interviews were conducted with individuals from the study population. The purpose of these pilot interviews was to assess the participants’ understanding and acceptance of the interview content. No revisions were deemed necessary based on the pilot interviews, and as a result, they were included in the final analysis.
The interviews had a median duration of 33 min, with an IQR from 29 to 39 min. It is worth noting that one interview was requested to be finished by the patient after 14 min. Despite its shorter duration, this particular interview was evaluated to contain valuable and relevant content and was, therefore, included in the final analysis.
Following each interview, the PI made field notes immediately, capturing important observations and details. These field notes played a crucial role in the initial analysis conducted to construct the analytical narrative. For transcription and coding purposes, the QSR software system NVivo V.12 was used.
Strategy of analysis
To enhance the trustworthiness of the study, the data analysis was conducted by a team of three qualitative investigators, incorporating investigator triangulation.14 Thematic analysis was employed, which encompassed six distinct analytical phases.15
In phase 1, the transcription process was carried out by a scientific assistant and the PI using the intelligent verbatim transcription method. The PI transcribed three interviews, while a scientific assistant, who was not part of the team, transcribed eighteen interviews. The transcripts were thoroughly read multiple times to become familiar with the content, and initial notes were taken to generate ideas for coding. In phase 2, the PI initially coded the dataset using an inductive coding approach to organise the data into meaningful groups. Subsequently, the team of investigators discussed the 32 generated codes collectively. For phase 3, a semantic approach was employed to develop initial themes based on the identified codes. The investigators engaged in discussions regarding the relationship between the codes and themes, resulting in a total of nine themes being considered. In phase 4, the themes were further refined through extensive discussions among the investigators and were subsequently validated through a comprehensive discussion with the PPI board. Eventually, five main themes emerged, namely: (1) good compliance with intravitreal treatment, (2) the dual role of relatives, (3) treatment commute, (4) hospital barriers and (5) preventive health literacy. During phase 5, each theme was supported by relevant quotes extracted from the interviews and incorporated into the final manuscript. This helped to provide concrete examples and strengthen the findings. Finally, in phase 6, the findings were presented and effectively addressed the aim of the study, bringing the research to a meaningful conclusion.
Results
Demographics
We enrolled a total of 21 patients diagnosed with nAMD, and their median age was 79 years (IQR 76–85 years). Among the participants, 11 were married or living with a partner, while 10 patients lived alone. The duration of nAMD varied, ranging from 1 to 20 years, with a median duration of 6.2 years. Among the patients, eight had nAMD affecting one eye, while 13 had it in both eyes. Before the interview, one patient (ID10) had discontinued treatment for personal reasons, while the remaining participants continued to receive regular intravitreal treatment at the hospital. Unfortunately, no potential participants with non-Western backgrounds volunteered for our study. The study included a total of 10 patients treated at ZUH and 11 patients treated at OUH, as detailed in table 1.
Demographics
Table 2 displays the quotes extracted from the study participants, which are used in the Results section.
Participant quotes
Good compliance with the intravitreal treatment
This theme highlights the patients’ high level of adherence to the recommended treatment, despite encountering various barriers. It is noteworthy that none of the patients currently undergoing treatment expressed any inclination to deviate from the recommended course of treatment (quotes 1 and 2). Even though several patients were unaware of the underlying pathological mechanisms of nAMD (quotes 3 and 4) and the treatment effects of VEGF inhibitors, this lack of knowledge does not seem to serve as a barrier to their ongoing treatment (quotes 5 and 6). The uncertainty surrounding the efficacy of the recommended treatment does not appear to drive patients to seek alternative treatment options (quotes 7–9).
Despite the negative effect of intravitreal treatment on the mental well-being of some patients, their good compliance with the treatment persists. One patient, who had been receiving treatment for 1 year, described the adverse impact of the intravitreal treatment on their well-being (quote 10). The negative impact on mental well-being does not appear to diminish over time. A patient who had been receiving treatment for over 5 years shared their ongoing sentiments regarding the treatment and expressed concerns about the potential negative progression of the disease (quote 11).
Dual role of relatives
This theme highlights the essential role that relatives play for many patients, although the nature of their influence on the course of treatment can vary significantly. For some patients, relatives serve as facilitators, providing support and assistance in attending treatment. However, for others, relatives can act as barriers, potentially hindering the patient’s ability to access and adhere to treatment. The impact of relatives on the treatment process depends on various factors, including their available resources. One patient and their relative specifically described the impact of their patient–partner relationship on the treatment experience (quotes 12 and 13). Certain relatives play a significant role in providing reassurance and investing considerable time in supporting the patient. One patient and her daughter described how the daughter drives the patient to the hospital, despite of the daughter living 70 km away from the patient and 100 km from the hospital. This example highlights the dedication and support demonstrated by relatives who are willing to make substantial efforts to ensure the patient’s access to necessary treatment (quotes 14 and 15). Interestingly, patients without a partner do not appear to face significant challenges in finding the necessary support. They are resourceful in seeking alternative sources of social support, such as friends, and do not express a sense of missing a partner during the course of treatment. This finding suggests that these patients have found their own ways to cope with their condition and establish a support network (quote 16).
In certain cases, relatives can indeed become a barrier to treatment. We encountered a situation where one patient had to discontinue treatment due to her obligations as a caregiver for her sick husband. The patient’s dual role as a caregiver at home and caretaker became apparent, ultimately forcing her to make a difficult choice between her own treatment and the care of her husband. This example highlights the complex dynamics and challenges that can arise when patients are faced with competing responsibilities and priorities within their family context (quote 17).
Treatment commute
This theme explores how the commute from home to the hospital can hinder the acceptance of the recommended treatment among this group of older vulnerable individuals. It is worth noting that the proximity of patients to the treatment site varied greatly. Some patients lived within cycling distance, while others had to travel over 130 km, including a ferry ride, which could take more than 3 hours each way. However, the perception of whether this long commute was seen as a barrier or a positive aspect varied significantly among patients.
In terms of transportation, five patients used a flex-traffic service, which is a tax-funded taxi service for individuals with special needs, to commute back and forth to the hospital. One patient, who had a 2½-hour drive with flex-traffic each way, described the inconvenience of the waiting time at the hospital (quotes 18 and 19). Interestingly, this patient expressed that she did not wish for the treatment to be moved closer to her home, as she believed that doing so would introduce other challenges. This perspective highlights the complex considerations that patients may have regarding the location of their treatment. While the long commute may pose difficulties, patients may also take into account other factors, such as the quality of care, familiarity with the hospital and access to specialised resources, when weighing the potential benefits and drawbacks of relocating the treatment closer to their residence.
A patient who resides 30 min away from the hospital described their experience with flex-traffic, as effortless and even enriching (quote 20).
One patient used public trains for transportation as she preferred to travel independently. However, impaired vision can make using public transportation challenging. This underscores the potential difficulties that can arise when individuals with visual impairments navigate public transportation (quote 21).
Three patients used Falck, a self-financed taxi service, for their transportation needs. One patient, who had a lengthy travel distance that included a ferry ride, discontinued treatment for a period due to the extended travel time. However, the fear of losing his vision prompted him to reconsider and resume treatment (quotes 22 and 23).
Hospital barriers
The interviews indicated that there were organisational variations in how hospitals scheduled patient appointments. In one hospital, patients were provided with appointments for their next three treatments during their check-up visits. This practice seemed to offer patients a sense of security by knowing the designated time for their treatment in advance. Additionally, if the scheduled time was inconvenient for the patient, they had the option to discuss it with the secretary immediately and make changes or contact the hospital by phone (quote 24). In contrast, the other hospital relied on sending a letter through Digital Post, which is a digital public communication system, to notify patients when it was time for their treatment. However, this approach created a sense of insecurity among patients and, in some cases, made them feel responsible for keeping track of their treatment plan. The lack of direct communication or personal interaction in this process may have contributed to the patients’ unease and the perception that they had to take on additional responsibility in managing their treatment schedule (quote 25). The ophthalmologists often prescribed a series of three treatments with specific intervals, but the patients expressed worry and uncertainty because they were only given one appointment at a time. They desired more clarity and information regarding the overall treatment plan, including the timing and scheduling of subsequent treatments (quote 26). One patient had the ability to easily notice when her vision was deteriorating and required treatment. However, she found it frustrating not to receive timely notifications for treatment within a 6-week interval. The lack of timely summons added to her frustration and hindered her ability to maintain optimal vision care (quote 27).
Several patients expressed the need for optician involvement in their nAMD treatment, working alongside doctors. They believed that having an optician knowledgeable about nAMD would improve concerns of receiving inadequate care. The cost of treatment was also a significant factor, with patients perceiving the expenses associated with glasses as high compared with other similar options available to them (quote 28).
Preventive health literacy
This theme explores the preventive measures that patients themselves attempted to implement in order to prevent the progression or occurrence of nAMD in their other eye. Despite their efforts, these patients had low health literacy and limited understanding of the underlying pathological mechanisms of nAMD and the potential preventive effects of interventions. Some patients had heard about AREDS-vitamin supplementation as a means to reduce the risk of developing nAMD in an eye with moderate to severe dry AMD and had tried it.16 However, none of the patients adhered to the recommended dosage of the supplementation (quote 29).
Patients who were smokers had received advice to quit smoking, but they struggled to comprehend the link between smoking and the development of an eye disease. The connection between their smoking habits and the risk of eye disease was not clear to them, leading to difficulties in fully understanding and appreciating the importance of smoking cessation for their eye health (quote 30).
Several patients highlight the satisfaction that comes from being able to actively take steps to prevent further illness, while expressing frustration when observe a lack of available options or if they do not feel that preventive measures make a difference. One patient, who also dealt with arthritis, described the difference between arthritis and nAMD in this regard (quote 31).
The patients expressed uncertainty regarding how to approach preventive measures, such as diet, exercise, basic eye care and the use of lubricating eye drops. They sought answers and guidance in these areas (quote 32).
Discussion
This study explores the barriers and challenges reported by patients during the course of nAMD treatment in Denmark, providing valuable insights for developing tailored interventions for this patient group. The main findings, described through five identified themes, shed light on important aspects of the treatment journey: good compliance with intravitreal treatment, the dual role of relatives, treatment commute, hospital barriers and preventive health literacy.
Our study revealed a highly adherent patient group who did not consider opting out of treatment because they find the course of treatment somehow unproblematic and without significant barriers. In contrast, a recent study by Thier et al17 with nAMD patients in Germany found that the pain associated with therapy and a lack of perceived positive effects led individuals with significant vision loss to discontinue treatment. Effective communication strategies were identified as crucial in preventing patients from discontinuing therapy, a recommendation echoed in the work of Hüsler and Schmid18 from Switzerland. These findings suggest the need for further research, particularly in countries where treatment is free or tax-funded, as the economic aspect may impact patients’ adherence. In Denmark, where treatment is tax-funded, patients demonstrated compliance despite other non-economic barriers.9 19 Although the economic factor may play a role in expensive treatments, additional research is required to draw definitive conclusions.
Numerous studies worldwide have explored the impact of nAMD treatment on patients’ quality of life over the past decade, consistently highlighting its significant effect.20–22 Our study focused on the burden of commuting to and from the hospital, a factor considered during patient selection for interviews. Snowball sampling was employed to recruit two patients living on a small island, necessitating ferry travel to the hospital. One patient discontinued treatment due to the long commute. This aligns with a systematic review indicating that visit frequency and travel time pose significant barriers to treatment.23 However, patients demonstrated adaptability and coped with travel time through various means, such as assistance from private taxi services and support from relatives. The dual role of patients as both supporters and recipients of support is not unique to nAMD but is observed in other patient groups, including those with ischaemic heart disease.24 The well-being of partners and relatives should be considered by the treatment team. However, the absence of a partner or close relative should not cause undue concern.
Our study demonstrated that appointment scheduling frustrations arose when patients were unable to book appointments well in advance. Some patients felt responsible for monitoring their treatment plan due to the lack of captured treatment regimens. Conversely, another hospital handled this issue effectively by providing advance notice of appointments, which was appreciated by patients. These findings align with the work of Talks et al,4 who suggest that knowing and understanding the timing of intraocular injections allows patients to mentally prepare and have confidence in the treatment process. These insights of the present study may inspire changes in organisational workflows that provide patients with advance appointment information and involve them in the planning process. However, further research is needed to assess the positive outcomes of such changes. It could be speculated that financial constraints at the departmental level may lead to longer treatment intervals than medically prescribed, reflecting an imbalance between patients’ needs and available resources. Addressing this issue requires political-level discussions beyond individual departmental changes.
A previous study highlights that patients with AMD and vision loss may require more time to comprehend health information, emphasising the importance of tailored health education to support self-management.25 In our study, most patients expressed difficulties in explaining nAMD but did not perceive a lack of information or knowledge about the disease as problematic. Due to the unavailability of visual acuity data, the impact of visual impairment on patients’ learning and understanding of disease information remains unclear, particularly for those without support from a partner or close relative. Additionally, some patients expressed a desire for a network of other nAMD patients to share experiences, information and understanding, while others preferred less engagement. Unlike conditions such as osteoporosis, diabetes or heart disease, Denmark does not have an established nAMD network. Patient attitudes towards such a network may vary, and its feasibility and benefits require establishment and evaluation.
Having relatives present during the interviews may potentially have introduced bias by influencing participants’ responses and limiting their willingness to share sensitive information, leading to social desirability bias and impacting data authenticity. However, the presence of relatives can also offer emotional support and context that enriches the depth of participant responses especially among elderly.
Strengths and limitations
To enhance the trustworthiness of the study, we employed various techniques, including investigator triangulation and validation of findings with a PPI board comprising nAMD patients and ophthalmologists.14 A detailed description of methods and considerations ensured consistency and dependability, while researcher triangulation strengthened the confirmability. The PI, a doctor with extensive clinical experience in ophthalmology, reflected on how his professional background and pre-understandings may have influenced the study, ensuring credibility. The qualitative nature of the study enabled a detailed exploration of patients’ perspectives, which may be challenging to capture using quantitative approaches. Another strength was the use of our PPI board, which played an active and integral role in providing valuable insights into potential barriers faced by patients and the public addressed in the study. Their input was particularly significant and enhanced credibility as they brought first-hand experience as patients or caregivers, providing a unique perspective on the challenges encountered during the treatment of nAMD. It is important to acknowledge the limitations of the study. Purposeful sampling aimed to achieve maximum variation, allowing for a diverse range of nAMD experiences, but the findings are not generalisable due to the small sample size and qualitative nature of the study. No potential participants with non-Western backgrounds volunteered for our study, which could have implications for the study’s transferability, especially in relation to certain aspects, such as the theme of preventive health literacy. Previous studies26 have indicated a higher incidence of nAMD among Europeans compared with individuals from other ethnic backgrounds. However, this does not automatically increase the study’s transferability to broader populations, and further research in this area is required.
Conclusion
This study highlights the adherence of patients with nAMD to their treatment despite various barriers and offers valuable insights into the multifaceted aspects of managing nAMD in elderly patients. By recognising and addressing the identified themes, healthcare professionals can work towards providing more comprehensive and patient-centred care, ultimately leading to improved outcomes and enhanced quality of life for patients with nAMD. Further research and collaborative efforts among healthcare stakeholders are warranted to build on these findings and advance the field of nAMD management.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
The study adhered to the ethical principles outlined in the Declaration of Helsinki. Prior to participating in the study, all participants provided written informed consent, which is essential, especially since these patients may experience visual or cognitive impairments that require special attention to ensure their full understanding of the purpose of the study. They were made aware that their involvement was entirely voluntary, and they had the option to withdraw from the study at any stage, if they wished to do so. Given the potential vulnerability of elderly patients, particularly those dealing with health issues, it was crucial to take extra measures to protect their well-being. Therefore, interviews were scheduled with careful consideration. They take place at the hospital on the same day as the participants’ treatment, aiming to minimise the effort required by participants and ensure their comfort during the research process. Confidentiality of the participants’ data was strictly maintained, following established guidelines for data handling and protection. The study was assigned the record number 22/10138 in the register of the Region of Southern Denmark, indicating its official registration. Although the study was reviewed by the research ethics committee, it did not require explicit permission to be conducted.
Acknowledgments
We sincerely thank the patients and their relatives for generously sharing their experiences. Additionally, we are thankful to the ophthalmologists for sharing their experiences and we would like to acknowledge and thank Roy Ewan for his excellent work in translating the quotes from Danish to English.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @bthinggaard
Contributors BST contributed to the study design, conducted the interviews, performed the analysis and wrote the manuscript. LS and MP contributed to the study design, analysis and writing of the manuscript. JG contributed to the study design and manuscript writing. TLS contributed to the manuscript writing. All authors critically reviewed and approved the final version of the manuscript and committed to being accountable for addressing any concerns related to the work’s accuracy or integrity. BST is acting as guarantor for this study.
Funding This study was funded by VELUX FOUNDATION (grant-ID: 00041038).
Competing interests JG has received speaker’s fee from and has served as an advisory board member for Bayer, Novartis, Roche and Allergan, not related to this work. The other authors declare that no potential conflicts of interests exist in relation to this work.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.