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Abstract
Background Interstitial lung disease (ILD) is comprised of a heterogeneous group of pulmonary diseases. Oxygen therapy is used in patients with advanced lung disease; however, there are challenges associated with initiation of oxygen therapy specific to individuals with ILD. The key objectives of this study were to create a common understanding of the facilitators and barriers to oxygen therapy for patients with ILD, and healthcare professionals (HCP) caring for patients with ILD.
Methods This qualitative study included 1 hour semistructured focus groups/interviews. An iterative and concurrent process was used for data collection and analysis to allow for supplementary development of themes and concepts generated. Data analysis used a three-phase approach: coding, categorising and development of themes.
Results A total of 20 patients and/or caregivers and 31 HCP took part in 34 focus groups/interviews held over 3 months (November 2022–January 2023). Facilitators to oxygen therapy were identified including support from HCP and support groups, the perseverance and self-advocacy of patients, a straightforward administrative process and vendors/private industry that expedite access to oxygen therapy. There were also several barriers to accessing oxygen therapy for patients with ILD. The themes identified include rural disparity, testing requirements and qualifying for funding and the need for ILD-specific evidence base for oxygen therapy.
Conclusion Further research is needed to facilitate development of specific exertional oxygen criteria for patients with ILD, to create supports for oxygen use and monitoring and to enable providers to tailor therapy to patients. Oxygen therapy education for ILD should address the benefits and risks of oxygen therapy.
- Long Term Oxygen Therapy (LTOT)
- Interstitial Fibrosis
Data availability statement
Data are available upon reasonable request. Availability of data and materials—the data sets used and/or analysed during the current study are available from the corresponding author on 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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WHAT IS ALREADY KNOWN ON THIS TOPIC
Oxygen therapy is used in patients with interstitial lung disease (ILD) with resting hypoxemia; however, there is limited evidence regarding its clinical efficacy, and often data are extrapolated from studies in patients with chronic obstructive pulmonary disease. Experts suggest that oxygen therapy should be recommended to patients with ILD who exhibit severe resting hypoxemia or exertional desaturation of SpO2 to <85%–89%, especially for those experiencing symptoms or reduced exercise capacity. However, funding programme guidelines are variable, and complex.
WHAT THIS STUDY ADDS
This study assesses the facilitators and barriers to oxygen therapy access for patients with ILD. Support from healthcare professionals (HCP) and support groups, the perseverance and self-advocacy of patients, a straightforward administrative process and vendors/private industry that expedite access to oxygen therapy were seen as beneficial to the process. Barriers included rural disparity, testing requirements and qualifying for funding and the need for ILD-specific evidence base for oxygen therapy.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
This study may be used to inform the refinement of funding guidelines for oxygen therapy for ILD, inform education development for patients and HCP and identify areas of future research.
Background
Interstitial lung disease (ILD) is comprised of a heterogenous group of pulmonary diseases, often characterised by the development of a progressive parenchymal fibrosis, leading to restrictive ventilatory patterns and, eventually, in the most severe forms, to respiratory failure and death.1 Management of ILD is complex; patients frequently experience diagnostic and referral delays, and require both pharmacological and non-pharmacological therapeutic approaches.1 Recent national and international guidelines address the diagnosis and management of this complex condition.2 3 Oxygen therapy is used in patients with advanced lung disease with resting hypoxemia; however, there is limited evidence regarding its clinical efficacy for patients with ILD, and often data are extrapolated from studies in patients with chronic obstructive pulmonary disease (COPD).2 4 5 This lack of evidence, particularly related to oxygen therapy in patients with exertional hypoxemia, has created discrepancies in clinical approaches and recommendations, causing a need for evidence-based guidelines focusing on patient-centred outcomes.6–8
A recent modified Delphi survey of ILD experts determined that oxygen therapy should be recommended to patients with ILD who exhibit severe resting hypoxemia or exertional desaturation of SpO2 to <85%–89%, especially for those experiencing symptoms or reduced exercise capacity.9 Research has demonstrated that ambulatory oxygen improves breathlessness and cough symptoms in individuals with ILD that are not hypoxemic at rest, but develop exertional desaturation on exercise.10 11 International guidelines suggest that patients with ILD who experience a PaO2 at or below 7.3 kPa (55 mm Hg), or a PaO2 below 8.0 kPa (60 mm Hg) with pulmonary hypertension and breathlessness may benefit from at-home/ambulatory oxygen therapy.12 Moreover, the guidelines suggest that patients who show improvements in breathlessness and hypoxemia through the use of oxygen therapy should be considered for a prescription of supplemental oxygen.12 However, agencies that fund healthcare implement their own requirements for funding of oxygen therapy, with limited guidance on criteria identifying which patients should be provided oxygen.4 The process often requires extensive and repeated testing to qualify for and maintain supplemental oxygen therapy funding.
In Alberta, Canada, eligibility criteria for funding oxygen therapy are complex, and patients with ILD (and other respiratory conditions) are most commonly funded through one of two criteria. Alberta’s population is over 4.7 million, and the fourth largest province in Canada. Like all Canadian provinces, there is a system of universal healthcare, offering a unique setting for this research. In brief, in Alberta, patients may receive funding for 3 months if they demonstrate resting hypoxemia (PaO2<60 mm Hg). This initial funding must be followed by a reassessment that requires a PaO2 of <55 mm Hg to secure an additional 9 months of funding. Alternatively, patients who fail to qualify through the resting hypoxemia stream may request a walk test whereby to qualify they must demonstrate: desaturation on room air, or a clinically significant improvement in dyspnoea or walk distance on oxygen. Funding is complex and involves either initial demonstration of resting hypoxemia (PaO2<60) followed by the need to requalify, or desaturation on a walk test or significant improvement in dyspnoea or walk distance on oxygen (see online supplemental materials for an example of qualification criteria).
Supplemental material
Supplemental material
A recent systematic review of 13 qualitative research studies identified barriers to oxygen therapy for patients with ILD and include the oxygen delivery system design, the costs associated with oxygen therapy, and the concern of social stigmatisation.13 The studies in the review focused predominantly on the experiences of individuals with ILD and/or caregivers (12 studies), while only one study provided the perspective of respiratory physicians. The complexity of the oxygen funding qualification process, combined with the demonstrated barriers to oxygen use, indicate the need for further review of the complex factors associated with the initiation of oxygen therapy for patients with ILD from the perspective of patients, caregivers and HCP. The key objectives of this study were to characterise the facilitators and barriers to oxygen therapy for patients with ILD and healthcare professionals (HCP) caring for patients with ILD within the Canadian context.
Methods
A study advisory team was created to guide this research and ensure representation from key stakeholders, including patients with lived experience with ILD, family caregivers, HCP (representing fields of respirology, nursing, respiratory therapy and community health), oxygen therapy vendors/suppliers and representatives from the Alberta Activities of Daily Living (AADL) Respiratory Benefits programme which oversees government funding of oxygen therapy). The advisory team identified a purposeful sample of potential study participants groups (patient support groups, ILD clinics, HCP that provide care to ILD patients, oxygen therapy vendors, oxygen therapy programme administrators, etc) were selected to participate in the qualitative focus groups and interviews.14 Patient and caregivers were recruited to participate through patient support groups and two ILD clinics. Written information was provided to potential participants, and study representatives briefly attended support group meetings to address questions. HCP were recruited through a snowball methodology, with written information being disseminated to respiratory HCP groups, inviting participation and requesting information be shared with other HCPs. In both instances, potential participants were invited to email a study team member to address questions and discuss the project prior to signing up to participate. Potential participants were then provided with an information sheet and consent form for their review.
The semistructured interview guide focused on potential facilitators and barriers of ILD management and oxygen therapy use. The interview guide was developed in collaboration with the advisory team who provided expertise in ILD, oxygen therapy and the lived experience (online supplemental material). Participants were sent consent forms by email. The consent forms were formally reviewed in detail prior to participation in the focus group, and participants were asked to provide verbal consent to participate. The focus groups were conducted by HS with support from SDR and were limited to 1 hour. One-on-one interviews were completed where necessary, to accommodate the schedule of participants. In some instances, participants were unable to join at scheduled focus groups and were subsequently offered interviews to foster their participation. The semistructured interview guide was the same and data from interviews and focus groups were combined.
The inclusion criteria for the participants was comprised of those with a lived experience with ILD, such as patients or family caregivers, who were able to complete a 1 hour focus group either by an online video platform or phone (when unable to use the video platform). HCP were invited to participate if they could take part in an online video interview/focus group and had been involved in the care of patients with ILD. A broad representation of HCPs (medicine, nursing, respiratory therapy, etc) and settings (community, acute care and AADL) were invited.
Focus group data were amplified through field notes and memos, completed after each focus group to describe the setting, tone, participant interactions and interviewer’s perspective of the events. Several approaches were used to foster a rigorous qualitative approach. Member checking was used in a structured approach to establish validity. First, paraphrasing was used during the focus groups to ensure information was being captured accurately. Second, key themes as they emerged were validated with future focus group participants throughout the data collection process.15 Third, key themes and quotes were shared with the advisory team for consultation, review and their interpretation throughout the data analysis process. Data triangulation was used by including a variety of experts in the focus groups, both those with lived experience, and a wide variety of HCPs. Descriptive validity was established through comprehensive narrative of the data, including field notes and memos.16
Patient and public involvement statement
Patients and public partners were engaged in this research. Patients and caregivers were invited to participate on the study advisory team. This team provided overall leadership for the study, including focus group interview guide design, data analysis and knowledge translation activities. Patient and caregiver partners were equal participants in the study advisory team.
Ethics approval was granted from the Health Research Ethics Board at the University of Alberta (Pro00119667) as the primary ethics board, and from the Conjoint Health Research Ethics Board at the University of Calgary.
Analysis
All focus groups were recorded, with transcripts created from the audio files. Transcripts were verified with the recording for analysis and uploaded to the NVivo V.10 software17 to facilitate data management and organisation. An iterative and concurrent process (comparative analysis) was used for data collection and analysis to allow for supplementary development of themes and concepts generated through the focus groups. Thematic analysis is a descriptive method of analysis that allows the exploration of open-ended responses, however requires transparency of the method to optimise confidence in the findings.18 The overall aim of thematic analysis is to identify and interpret key aspects of the data that are related to the research question,19 and involves searching across the data set to identify possible repeated patterns of meaning.20
While thematic analysis is a flexible method of qualitative analysis,20 we employed a three phase approach: coding, categorising and development of themes.21 As described by Braun and Clark,20 the first step of our data management included familiarising with the data, noting preliminary ideas that contribute to the development of initial codes. Data for each focus group were coded with code definitions used to ensure consistent application through the data coding phase. Codes were then categorised and organised into preliminary themes. Comparisons were then made between categories to identify similarities and differences, and development of themes. The themes were subsequent reviewed, where necessary common codes were combined. Codes were then named and defined and the first analytics report was generated. Final themes were verified with the study team, and with the advisory team (through an online meeting review).
Data collection concluded when there was agreement within the study team that data addressed the research questions and it was agreed that new insights were no longer emerging. The interviews and preliminary coding were completed by a PhD trained nurse with expertise in respiratory health with no involvement in the clinical care of the patient participants. Additional coding and interpretation was completed by a secondary coder from the research team.
Results
A combined 34 focus groups and interviews were held over a 3 month period (November 2022–January 2023). A total of 20 patients or caregivers with lived experience with ILD participated and completed a brief demographic survey. Table 1 summarises the demographic characteristics of the study participants. Of the three patients or caregivers with previous experience with oxygen therapy who no longer used it, two no longer required oxygen (due to successful lung transplants), and one had died (family member participated). Thirty-one HCPs participated, 30 of whom completed a brief demographic survey. The participating HCP brought many years of experience in their respective fields, with a mean of 17.9 years in practice (SD±9.6); and a mean of 13.1 years working with patients with ILD and their families (SD±8.2), with one noting an administrative and non-clinical role. Data analysis revealed three key themes of both facilitators and barriers to oxygen therapy for ILD. Table 2 provides an overview of the facilitators and barriers of oxygen therapy as identified by study participants.
Baseline characteristics of patients/caregivers and healthcare provider participants
Summary of facilitators and barriers to oxygen therapy for individuals with ILD and exemplars from the focus groups
Facilitators of oxygen therapy for ILD
Several facilitators to oxygen therapy for patients with ILD were identified. Themes include support from HCP and support groups, the perseverance and self-advocacy of patients, having defined criteria for oxygen therapy funding and the use of a web portal for funding administration and vendors/private industry HCP that expedite access to oxygen therapy.
Healthcare professionals and support groups
HCPs were viewed to be advocates for patients accessing oxygen therapy funding. ‘Having somebody that is willing to do a little bit of extra work to try and gain that funding for them, I think, is the biggest facilitator. But then, at the end of the day it does really come down to do you meet those numbers or not for the funding’ (HCP). Patients and caregivers state that their HCP team is the greatest asset or strength we have for supporting patients and families. A patient noted ‘I got dedicated specialists (that are) superb. They were very understanding and helpful’ and another stated ‘And the support I get through the doctor’s clinic, and the doctor herself has really informed me of a lot and helped me deal with some of the symptoms’.
A patient with ILD mentioned that attending support groups, both in person and online was an important component of their journey, particularly hearing from the experiences of others. ‘And I heard all the stories, and they had great strength … (we) could sit there in the various conditions and laugh and tell stories. And that made me think you know what, this is okay. I’m still going to have a life’. Another patient stated, ‘I think that group gives people a lot of support and they start to see that there’s other people just like them.’.
Patient perseverance and self-advocacy
Patients with ILD using oxygen therapy indicate maintaining a positive outlook and perseverance helps them manage. ‘As of right now, I’m able pretty much able to do everything I used to do, except that I have to carry my oxygen … So Im just getting used to having a buddy. But other than that, there hasn’t been anything to this point that has stopped me from doing, so I’m still fairly active’. They find ways to innovate to allow them to continue to lead their lives. ‘My wife bought a backpack off Amazon. And I put the tanks in there and I set it at 10 liters per minute because that’s what I need for walking, and I was out there running my snow blower. It is fairly well self-propelled the way it operates; you just basically have to walk behind it. And that works to cut the grass with the same setup, a backpack’. Patients with ILD are advocates for themselves, and others. ‘If you’re a person who’s on a bunch of medication, nobody needs to know, right? You take that medication in the privacy of your own home, your own space. It’s between you and your weekly pill container. This is medication, it’s visible to the outside world. And you know as much as you want to keep medical stuff private. You can’t. Fortunately, I’m the kind of person that will happily tell you the story, I will happily talk about it. One of the reasons I’m like that is I don’t want disinformation’.
Defined criteria and web portal for provincial funding
Patients who met the oxygen therapy funding criteria at their first assessment were able to access oxygen therapy quickly, and HCPs appreciate the well-defined criteria and web portal for submission and administration of oxygen therapy funding. ‘One thing that really has helped me out is the defined criteria. I mean, that’s super helpful for us, because now at least we know when we can prescribe it, and if they’re going to get funding … that has actually helped a lot just to help lower our frustration level because we at least know how to (manage) expectations’ (HCP). Having a defined criterion improves the understanding and efficiency of the process for accessing for those that readily qualify. Using a web-portal for oxygen therapy funding application and administration has streamlined and improved the efficiency of the process.
Vendors/private industry HCP expedite access to oxygen therapy
The network of vendor services in many communities around the province and their ability to extend services to remote areas facilitate oxygen therapy access. ‘A lot of other provinces if you’re outside of your main areas, you’re out of luck, right? And that doesn’t seem overall true in Alberta which I think is a really good strength. I think that generally, the process is understood enough in Alberta for a client to get care rather quickly, which I think is good’ (HCP). A patient noted that access to oxygen therapy once approved for funding is quick and often set up directly in the home. ‘I just had it delivered to the house as well. But yeah, it’s been a breeze for me … they’re wonderful people … they all know me by name, of course and they’ve been super, so I never (have) an issue’. Additionally, follow-up services such as providing additional equipment was noted as a strength when using oxygen therapy. ‘I think…as long as they're on the funding they can get whatever they need to get’ (HCP). It is noted that there are limits to the number of oxygen cylinders an individual may have in their residence, which may restrict their ability to access outdoor activities, due to oxygen conservation when requiring oxygen at a higher flow rate.
Barriers to oxygen therapy for ILD
There were also several barriers to accessing oxygen therapy for patients with ILD. The themes identified include rural disparity, testing requirements and access to funding for oxygen therapy, and the need for ILD specific evidence base.
Rural disparity
Patients in rural and remote communities often experienced limitations to oxygen therapy access. ‘If you’re in rural Alberta and you need help, you’re probably not going to get it and that’s a shame, but I think it’s a well-known thing’ (HCP). ‘I always call them the ultra-remotes because there are areas that you need a plane to physically get there, or an ice road. And if something were to happen, the closest offices we have is (a distant city). Unfortunately, some of these extremely high flow patients, I don’t know if their health centre would have the ability to provide them with their oxygen needs if their power went out as well. So, safety is always my number one concern with a lot of these patients’ (HCP). One patient indicated she moved to gain access to services including oxygen: ‘I moved down here from the Arctic five years ago to get better health care and services. Otherwise, I was traveling down constantly for medical appointments seeing all my specialists and so on. And I just got fed up with it and decided I’m ‘just gonna move. Lock stock and barrel. And I relocated here. (It) has been one of the hardest, but best moves I’ve made. Oxygen therapy has made it so much easier’. In some cases, oxygen must be transported by air, and storage (due to safety concerns) is an important consideration. It was also disclosed that the cost to ship oxygen cylinders to remote communities is higher than the reimbursement paid in many cases. There were instances described where patients resided in local motels for periods of electricity instability in communities, to ensure they had sufficient power supply to support their oxygen needs. As a result of the practical challenges associated with oxygen therapy use in rural communities, rural disparity is clearly a significant barrier in accessing oxygen therapy for patients.
A significant barrier identified was the testing and access to funding for oxygen therapy. This barrier was identified by both patients with ILD, caregivers and HCPs. ‘The hoop jumping can be a bit of a headache, to kind of hit one test, get denied to move to the next. So, the process itself, to try to get the funding is quite tedious for these patients’ (HCP). Another HCP noted: ‘It’s so hard for them to get there (the testing site). A lot of people just find it’s just too much. It’s too much to go there, get parked, get in there, get the test’
Patients noted the challenges when they didn’t meet the criteria to qualify for funding, resulting in repeated testing. ‘And I can only get down to 82. Okay, I didn’t qualify …. So we had to wait a couple of months. We did it all over again. And there again, I didn’t qualify … so I started looking into this and saying, now wait a minute. You got every other province in the country. You got all the States, you got Australia have a requirement of 88–86 and we’re sitting at 79. That is unreal’. After discharge from hospital with oxygen, one family member finally paid after tests could not be completed: ‘And then when we got home (from hospital) we had to pay the first month because he had to go through a whole bunch of tests in order for the government to pay for it … He just couldn’t do it. And he tried and he was so mad at himself because he couldn’t do it. He was very exhausted by the time he finished it. And he’s like, why do I have to go through a whole bunch of tests just for to get oxygen paid? I just paid from my pocket’
Need for more ILD-specific oxygen therapy Research
HCPs indicate that there is limited ILD-specific research to inform the appropriate use of oxygen therapy for patients with ILD, that would subsequently inform the funding criteria. As there are limited ILD-specific data, the criteria for oxygen therapy funding are generally extrapolated from research conducted with patients living with COPD (and other respiratory conditions). ‘The data seems to be one of the really big things that have kept us from moving forward, because we don’t necessarily have enough clinical data to justify having a separate policy or separate criteria that would be more specific and cater to ILD vs what’s currently available which is really big on COPD, asthma, and sleep’. ‘What’s magical about having a PaO2 of 55 or higher if you have ILD, does it make you live longer? Does it improve your quality of life? Does it reduce exacerbation frequency? I don't know’. HCPs noted that additional research is required to establish ILD-specific criteria for oxygen therapy, particularly those that experience exertional hypoxemia and dyspnoea. Patients and caregivers were less specific and did not indicate that research for ILD-specific oxygen therapy guidelines were lacking, however they were aware that criteria for funding is generally based on the clinical guidelines for other respiratory diseases, notably, COPD. They wanted acknowledgement that their experiences and needs are unique and may require their own criteria for oxygen therapy funding.
Discussion
This study highlights perceived facilitators and barriers to oxygen therapy for patients with ILD, their caregivers and HCPs. Themes identified as facilitating oxygen therapy for patients with ILD were care from HCPs and support groups, patients having perseverance and self-advocacy, the well-defined eligibility pathway access funding for oxygen therapy, the use of the web portal as an administrative tool and supportive vendors/private industry HCP. Challenges identified included rural disparity impacting access to oxygen therapy and/or oxygen vendors and the requirements needed to qualify for oxygen therapy funded by the health system. HCPs also highlighted a lack of research to support ILD-specific oxygen therapy guidelines and that the challenges associated with accessing oxygen therapy for patients with ILD can require patients to self-fund their own oxygen therapy, or in some cases, manage without it. Furthermore, although the vendors and private industry were supportive, it was identified that the provision and the use of oxygen therapy in rural or remote regions is challenging, expensive and includes unique safety concerns. This research provides a unique perspective of oxygen therapy administration to individuals with ILD that is predominantly funded by a government programme. This programme is challenged to meet the needs of a diverse population across a large geographic area of both urban and rural patient groups. Importantly, this research includes the voices of several key stakeholder groups including individuals with ILD, caregivers, and HCP (including oxygen therapy vendors).
Similar to other studies in which patients attending specialty ILD clinics reported a high degree of satisfaction with the support they received,21 22 patients, caregivers and HCPs noted the benefit of specialty clinics, and in particular, ongoing support for facilitating oxygen access and appropriate use. Patients indicated that support groups were an important source of oxygen-related information and ongoing guidance. As supported by the literature, patients with ILD noted that support groups provide a forum to share information, reduce isolation and gain valuable perspective about their disease.23 24 Patients require disease-specific and consistent information from trustworthy sources to assist them on their journey with ILD.25 It was also noted that patients with ILD requiring oxygen therapy need to self-advocate and endure significant stress with accessing oxygen therapy and that support groups and clinics were a valuable source of information related to this process.
The disparity and limited access experienced by patients living in rural, and in particular, remote communities was an important finding of this research. It has been previously described that patients residing outside of major centres experience difficulties with travelling for appointments and failing to be included in pulmonary rehabilitation programmes.22 It was also revealed in this study that the financial burden of travelling for eligibility testing was a common concern for patients residing in remote communities. Additionally, in previous research, patients with chronic health conditions in rural settings identified challenges including extensive travel, limited access to a primary healthcare provider and few opportunities for respiratory-related education.26 What is unique to rural patients who require oxygen therapy are the additional difficulties associated with ensuring equipment, oxygen supply, and in some instances, adequate and reliable power for continuous oxygen supply are available, creating safety concerns that not only make travel challenging but prohibitive for many patients. All patients are required to be tested for eligibility for funding for oxygen therapy at specific testing sites, limited to major urban centres. This situation also poses significant hardship for ILD patients, particularly for those in rural communities, who are required to regularly requalify for oxygen funding despite having a progressive and an irreversible lung condition.
Patients with ILD and HCPs found the testing requirements to determine oxygen funding eligibility to be burdensome. They indicate that the repeated testing is onerous, as testing sites are limited and often require travel (and financial burden) for patients. Additionally, patients have an ongoing worry that their oxygen funding may be removed following initiation. For example, there is a requirement for patients to have retesting completed following 3 months of oxygen use, to confirm the need for long-term therapy. As ILD is a progressive lung condition, it is highly unlikely that gas exchange would improve with time (unless they begin oxygen as a result of an acute exacerbation, in which case they may improve with treatment), and therefore it is highly unlikely that arterial oxygenation outcomes would change with repeat testing. Furthermore, the repeat testing creates administrative burden and cost to the healthcare system. Therefore, this requirement for repeated testing creates stress and burden for both the patient, and the healthcare system, with little evidence of its utility in ILD.
There were dichotomous views on the access to funding for oxygen therapy. For patients who readily qualified, the administrative process was seamless and easy to navigate and patients had access to oxygen therapy quickly. However, for patients who demonstrated less severe exertional hypoxia on initial testing, the process to access funding is much more rigorous (see online supplemental material). Patients, caregivers and HCPs alike indicated frustration with the challenges of testing requirements, often described as ‘hoop jumping’, required to receiving funding support for oxygen therapy. The requirement for repeated testing to maintain funding is perceived to be unduly burdensome on patients with ILD, creating physical, emotional and financial hardship. In some instances, families found it easier to pay for oxygen therapy, rather than pursue the rigorous testing required to receive government funding. To improve patient understanding of oxygen therapy for ILD, educational resources should address the funding qualification process, highlighting why testing is necessary and when supplemental oxygen therapy is needed.
The recent systematic review by Tikellis and colleagues13 importantly mapped previous qualitative research of facilitators and barriers to oxygen therapy for individuals with ILD to the Theoretical Framework Domains. Similar to the current research, they identified issues related to access and supply as major challenges, and the difficulties with variable funding that created inequitable access to oxygen. The systematic review also highlighted the need for education and practical support, and concerns related to social stigma.13 Our research further explored the specific challenges related to access to oxygen therapy, particularly related to completing the testing requirements required to establish and maintain eligibility for government funding.
It is noted that there is a lack of ILD-specific research to adequately address the specific oxygen therapy needs of patients with ILD. There is limited research specific to the benefits of oxygen therapy for patients with ILD, and the oxygen therapy criteria are generally based on studies conducted in patients with COPD.27 Patients advocate that the unique nature of their condition warrants ILD-specific oxygen therapy funding guidelines. The limited ILD-specific evidence for oxygen therapy also creates clinical variation.6–8
Further research is needed to develop a greater understanding of the benefits of oxygen therapy, including its impact on exertional dyspnoea, fatigue, cough and quality of life, specific to ILD. This would allow for the development of oxygen therapy funding criteria specific to the needs of patients with ILD and decrease the challenges patients experience with access and clinical variation.
Strengths
This research offers a unique contribution as it highlights the facilitators and barriers of oxygen therapy for individuals with ILD in a predominantly government-funded system. Additionally, this research provides insight from several key stakeholder groups including individuals living with ILD, caregivers and HCPs. Previous research has not brought together several stakeholders perspectives in a comprehensive way. Our research highlights the importance of bringing together the voices of stakeholder groups to address the facilitators and barriers to oxygen therapy for individuals with ILD.
Limitations
Many patients, and their caregivers, were recruited from ILD clinics and patient support groups thus introducing recruitment bias. Additionally, we did not have access to clinical information on the patient participants, and therefore are unable to report on clinical measures such as lung function, which would provide a greater understanding of disease severity at the time of enrolment. HCPs who participated in the study, given their experience and advocacy, may have a specific interest in taking part in research, and their views may differ from others. This study was conducted in Alberta Canada which has specific guidelines on oxygen therapy qualification through the government-funded healthcare system. Thus, identified barriers around qualification may be limited to Alberta; however, other barriers/facilitators (such as rural disparity, lack of ILD-specific research and the benefits of HCP support) should apply across various healthcare systems.
Conclusion
This research identified many facilitators of oxygen therapy for ILD patients including advocacy, a supportive HCP and vendors and clearly outlined funding criteria and administrative processes. Additionally, many challenges were identified, including rural disparity, oxygen eligibility requirements and a lack of a strong evidence base for oxygen use in ILD. Patients, caregivers and HCPs indicate that the current funding eligibility criteria in place in the province is overly burdensome for patients. Repeated testing requirements, uncertainty of ongoing funding and a complex process creates physical, emotional and financial stress for patients and their families. Further research is needed to facilitate the development of specific exertional oxygen criteria for patients with ILD, to create guidelines for oxygen use and monitoring and to enable providers to tailor therapy to patients. Further qualitative research may explore the social importance of oxygen therapy for individuals living with ILD and their caregivers.
Data availability statement
Data are available upon reasonable request. Availability of data and materials—the data sets used and/or analysed during the current study are available from the corresponding author on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants. Ethics approval was granted from the Health Research Ethics Board at the University of Alberta (Pro00119667) as the primary ethics board, and from the Conjoint Health Research Ethics Board at the University of Calgary. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
The study team would like to acknowledge the participation of the Advisory Team for their ongoing contributions to this research, particularly in the design of the interview guide and input into the study analysis. We would also like to express our gratitude to all of the focus group participants for their honest and valuable contributions.
References
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
Collaborators not applicable.
Contributors HS, SDR and MKS contributed to the study concept and design. HS and SDR completed the analysis. HS was responsible for manuscript preparation with support from SDR and CP. All authors contributed to the analysis and interpretation of the qualitative data and made substantial contributions to the manuscript. Clinical expertise was provided by GF, KAJ, MKS and IM. Additionally, all authors approved the final version for submission. HS is the guarantor.
Funding This study was supported by University of Alberta Hospital Foundation through the Alberta Boehringer Ingelheim Collaboration for Oxygen Outcomes (ABILD O2) (grant identification number: RES0057792).
Competing interests KAJ reports grants and personal fees from Boehringer-Ingelheim, grants and personal fees from Three Lakes Foundation, personal fees from Pliant Therapeutics, Hoffman La Roche Ltd, and Brainomix Ltd, and grants from University Hospital Foundation, outside the submitted work. MS has received consulting fees, speaker fees and grants from Boehringer-Ingelheim in the past 36 months. MKS has received grants from Alberta Boehringer-Ingelheim Interstitial Lung Disease collaboration and University Hospital Foundation, and consulting and honaria from Boehringer-Ingelheim. GF has received grants from the University of Alberta and Alberta Innovates and has received honoria from Boehringer-Ingelheim, Astra Zeneca, Roche and Fondazione Menarini, he has participated on an advisory board from both Boehringer-Ingelheim and Roche.
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.