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Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine logoLink to Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine
. 2024 Nov 1;20(11):1739–1748. doi: 10.5664/jcsm.11266

Patient experience of the use of continuous positive airway pressure for the treatment of obstructive sleep apnea with or without telemedicine during COVID-19: a qualitative approach

Tracy A Jones 1,2,, Jenny Roddis 2, Rebecca Stores 2
PMCID: PMC11530982  PMID: 38916281

Abstract

Study Objectives:

Continuous positive airway pressure (CPAP) is considered effective treatment for moderate-severe obstructive sleep apnea (OSA). Clinicians measure adherence to treatment by the number of hours CPAP is used per 24 hours. There have been very few studies examining the patients’ lived experience of CPAP and the barriers to use. This study examined the patients’ experience of OSA, CPAP use and treatment during COVID-19.

Methods:

This CPAP patient experience qualitative study was part of a larger project. The overarching study was a 3-armed nonblinded randomized controlled trial of patients on CPAP for treatment of OSA using standard care or 1 of 2 telemedicine interventions. Patients who had completed the randomized controlled trial study were invited to be interviewed via telephone, about their OSA diagnosis, CPAP experiences, their experience of using telemedicine, and the impact of SARS-CoV-2 (COVID-19).

Results:

Fifteen patients (5 from each arm of the trial) took part in a semistructured interview. Thematic analysis identified 3 themes: day to day living, standard hospital care vs telemedicine management, and living through COVID-19 with CPAP.

Conclusions:

All participants described significant symptoms caused by their OSA before diagnosis. Although CPAP treatment was often described as challenging, patients discussed the improvement in their symptoms with treatment. There were differing opinions on virtual appointments; however, the consensus was the use of telemedicine to support CPAP treatment was well received. COVID-19 appeared to have little effect on the patient experience.

Citation:

Jones TA, Roddis J, Stores R. Patient experience of the use of continuous positive airway pressure for the treatment of obstructive sleep apnea with or without telemedicine during COVID-19: a qualitative approach. J Clin Sleep Med. 2024;20(11):1739–1748.

Keywords: obstructive sleep apnea, continuous positive airway pressure, telemedicine, COVID-19, patient interview, qualitative, thematic analysis, patient experience


BRIEF SUMMARY

Current Knowledge/Study Rationale: Continuous positive airway pressure (CPAP) is considered effective treatment for moderate to severe obstructive sleep apnoea, but the use of CPAP is problematic. Telemedicine has been introduced into CPAP devices with the aim of improving adherence, however there are very few studies investigating the patient’s lived experience of CPAP treatment and different telemedicine interventions.

Study Impact: This study aims to understand the patient’s experience of CPAP treatment, the use of telemedicine and patient engagement with these technologies. This study is also unique as recruitment occurred during COVID-19 and offered insight into the changing landscape of CPAP treatment during a pandemic.

INTRODUCTION

Obstructive sleep apnea (OSA) is a condition whereby repeated pauses in breathing occur during sleep causing sleep fragmentation, daytime sleepiness,1 and increased cardiovascular risk such as myocardial infarction, stroke, and hypertension.24 The prevalence of sleep apnea within the general population has increased with reported rates in 1993 as 2% of females and 4% of males.5 More recent studies in 2015 have identified up to 50% of males and 26% of females who are middle aged have moderate-severe OSA (apnea-hypopnea index [AHI] ≥ 15 events/h).6,7 The increased prevalence is thought to be associated with increased obesity levels with 70% of patients diagnosed with OSA defined as obese (with a body mass index > 30 kg/m2).4

Continuous positive airway pressure (CPAP) is considered the most effective treatment for moderate-severe OSA and can be considered in mild sleep apnea (AHI ≥ 5–14 events/h) where other conservative treatments have failed.8 CPAP works by providing a pneumatic splint, therefore preventing the collapse of the upper airway during sleep and apneic events.9 Despite the clinical benefits of using CPAP, its use can be problematic with up to 30% of patients stopping treatment within the first year despite CPAP being the optimum treatment for OSA.10 National Institute for Health and Care Excellence (2021) identified several factors that affected CPAP use including nose bleeds, mask leaks, noise levels from the machine, anxiety around wearing the device, dryness of the mucus membranes in mouth and nose, and CPAP pressure intolerance. Clinicians encourage maintenance of CPAP use, with adherence to treatment considered as more than 4 hours a night for 70% of the time1113 as this has been shown to improve daytime sleepiness and mood.14 Previous studies have investigated the use of telemedicine to improve CPAP adherence with mixed results1418 and although these studies explored quantitative measures to examine CPAP use such as hours used, very few studies have explored the patient’s perspective and lived experience. Ward et al (2014)19 explored the literature regarding the management of CPAP from the users’ perspective and found that CPAP experience is often defined by the “expert” health care professional rather than the user and that more information from users was required to further understand the barriers. A recent study found that the patient perspectives of CPAP treatment should be considered when developing interventions to improve patient adherence.20

The first outbreak of SARS-CoV-2 (COVID-19) was identified in December 2019 with the number of cases being identified outside of China quickly increasing. On March 11, 2020, the World Health Organization declared the COVID-19 outbreak a “global pandemic.”21 Transmission is via droplets and aerosol particles from coughing, sneezing, and speaking.21 In March 2020, the United Kingdom (UK) went into its first lockdown. This led to pausing all nonurgent medical treatments while hospitals dealt with the influx of patients with COVID-19 requiring treatment. The pandemic affected patients requiring investigations for sleep apnea and treatment with CPAP with extra measures such as mask wearing, attending hospital appointments alone, and a drive by UK Government to move to more virtual appointments.21 CPAP treatment was also considered an aerosol generating procedure which increased any risk of transmission to staff and patients. Therefore, recommendations for masks, social distancing, sanitization practices, and screening for symptoms before entry into clinical spaces.22

This study explores the patient (user) experiences of being diagnosed with sleep apnea, using CPAP treatment for their sleep apnea, the use of telemedicine in supporting CPAP use, and the impact of COVID-19 on the patient’s treatment, using semistructured interviews.

METHODS

Participants

This CPAP patient experience qualitative study was part of a larger study.18 The overarching study was a 3-armed nonblinded randomized controlled trial of patients on CPAP for treatment of OSA using standard care or a telemedicine intervention18 (Figure 1). Participants were recruited consecutively following referral to the Respiratory and Sleep Department at the Isle of Wight National Health Services Trust United Kingdom. Diagnosis of sleep apnea was confirmed following a cardiorespiratory sleep study (SOMNOtouch, SOMNOmedics, Redditch, UK) with OSA confirmed by an AHI ≥ 5 events/h.23 Health Research Authority ethical approval was achieved on July 1, 2020 (Ref No 280212). Quantitative data collection took place between September 2020 and January 2022 with qualitative interviews taking place between January 2022 and March 2022.

Figure 1. Study design.

Figure 1

OSA = obstructive sleep apnea, RCT = randomized controlled trial, CPAP = continuous positive airway pressure.

Inclusion criteria for the overarching study included patients between the age of 18–80 years old. Exclusion criteria included patients with complex sleep apnea (Cheyne-Stokes respiration), pregnant females, patients with any mental or physical disability that prevented them from managing their own CPAP treatment, and patients that did not have access to technology such as smart device or understanding the technology to allow transmission of their CPAP data. Participants who met the inclusion criteria and consented to the study were randomized to 1 of 3 arms.

All participants in each arm we invited to an initial face-to-face appointment with a qualified clinical respiratory and sleep physiologist. They were fitted with an automatic CPAP device (DreamStation 1, Philips, Farnborough) at pressures 4–20 cmH2O. Patients were fitted with either an oronasal or nasal mask depending on patient preference. Patients also received oral and written information concerning their diagnosis and treatment plan. Arm 1 (standard care) were booked for a follow-up appointment with the clinician face-to-face. Data from their device were downloaded at their follow-up appointments via a digital data card onto a cloud-based website (Encore Anywhere, Philips), clinician and patient had no access to the data outside of this clinical appointment.

Participants randomized to telemedicine (Arm 2 and Arm 3) received different types of telemedicine interventions and therefore did not have the same access to CPAP data and online support.

Participants randomized to Arm 2 (telemedicine) had a removed cellular modem installed onto their CPAP device. This allowed the transmission of CPAP data to the cloud-based website which the clinician could access remotely. Any follow-up appointments were conducted virtually via telephone. The CPAP data were accessible during and outsider the clinical appointment to the clinician but not to the patient.

Participants randomized to Arm 3 (telemedicine) had the removable cellular modem installed onto the CPAP device and had access to their own data via a smart device application (DreamMapper, Philips) this allowed participants in Arm 3 to monitor their own CPAP use, set targets, access motivation and educational videos about OSA and CPAP use. A total of 90 participants were recruited to the quantitative trial.18 Patients were reviewed at 14 ± 7 days and at 180 ± 7 days. Any additional appointments triggered by the clinician or patient were also recorded and the reason for any extra contact.

Following completion of the quantitative data collection, all participants were sent a letter inviting volunteers from the study group to participate in a semistructured interview to explore their experiences of OSA, using CPAP for treatment of OSA, telemedicine, and COVID-19. Participant selection was via a first come first served basis with equal numbers from each arm of the study interviewed to ensure a cross section of experiences, due to each Arm of the study receiving different interventions. Fifteen patients, 5 from Arm 1 (standard care), 5 from Arm 2 (telemedicine modem), and 5 from Arm 3 (telemedicine with modem and smart device application), participated in a single interview 6–18 months after commencing CPAP treatment. The inclusion criteria included participants who continued to use their CPAP treatment following the research period (180+ days) and had given consent to take part in an interview via telephone with the researcher.

Procedure

Individuals contacted the researcher if they wished to take part in an interview. A mutually convenient date and time were arranged with the participant and the researcher to carry out a telephone interview. Face to face interviews were not offered as COVID-19 regulations were still in place. Consent was obtained and confirmed by the researcher with the participant as this had been signed at the beginning of the research period. The researcher and first author (T.A.J.) conducting the interview was a respiratory and sleep physiologist with clinical experience and expertise in this area. Initially 5 participants from each arm of the study (n = 15) were recruited with the intention to explore the research group experiences. Data saturation was used to determine sample size. Saturation was achieved after the initial 15 interviews when no further properties, insights, or codes emerged from the interviews, in line with recommendations in the literature (Hennink and Kaiser 2022).24

Semistructured interview questions were designed to explore several distinctive topics surrounding OSA and CPAP, the participants’ experience of sleep apnea, using CPAP treatment, the use of telemedicine, and the participants experience of treatment during COVID-19 (Table 1). Not all participants interviewed received telemedicine and therefore some patients could not offer their experience of this aspect of the study. Recorded interviews were determined by the interviewees and lasted between 3 and 38 minutes with the average time of 18.03 minutes and were recorded for transcribing. These interviews were transcribed verbatim and anonymized to protect patient confidentiality. Transcription was completed by the first author in June 2022.

Table 1.

Semistructure interview questions.

Questions
Question 1 Tell me about your experience when starting CPAP and your 6-month journey?
Question 2 Was this a positive or negative experience and why?
Question 3 How did COVID affect you experience and treatment?
Question 4 Were you seen face to face or virtually. What was your experience of this and was it a positive or negative experience?
Question 5Ϯ Would you have preferred a face-to-face appointment?
Question 6Ϯ How did you feel about your data being remotely monitored by the physiologist?
Question 7¥ If using the smart device application DreamMapper did you find this:
  • Easy to use

  • Easy to understand

  • Did it improve your understanding of your treatment?

  • Is there anything you did not like about the app?

  • What would improve you use of the app?

  • How often did you access your information via tablet and app?

Question 8 Are you happy for me to use the information you have provided within my research data all identifying data will be removed and anonymized.

ϮQuestion not asked in Arm 1 – standard care. ¥Question not asked in Arm 1 (standard care) or Arm 2 (cellular modem). CPAP = continuous positive airway pressure.

Data analysis

Interview participants’ demographic information was obtained (Table 2) and was representative of the wider participants within the overarching study. The quantitative data is reported separately in Jones et al (2024).18 An inductive thematic analysis approach was adopted when coding and analyzing the qualitative data. Thematic analysis is a “method of developing, analyzing and interpreting patterns across themes.”25 An inductive approach looks for themes within the data without considering previous research26 and can be used to explore the patient experience and perspectives. Braun and Clarke (2006)26 6 phase approach to thematic analysis was adopted to analyze the interview data. Interview data and journal notes were managed and coded in QSR NVivo 20, Denver, USA.

Table 2.

Baseline demographics of the study participants.

Patient Characteristics n = 15
Age (years) 63.2 ± 6.87
Sex (male/female) 9/6
Weight (kg) 112.4 ± 23.49
Height (cm) 172.8 ± 8.38
BMI (kg/m2) 38.6 ± 8.13
AHI (events/h) 46.13 ± 22.28
ESS 12.2 ± 5.06
Adherence (hours used in 24 hours) 6.51 ± 1.60

Data presented as mean ± SD. AHI = apnea-hypopnea index, BMI = body mass index, ESS = Epworth Sleepiness Score (out of 24), SD = standard deviation.

Data analysis followed a structured thematic approach with development, analysis and reflection of codes during the process (Figure 2). Codes were clustered into categories with these categories integrated into themes. The first author (T.A.J.) read through the 15 interviews several times taking initial notes and highlighting quotes. These quotes were then used to develop initial codes, codes were revisited and refined during the process using NVivo. Author (J.R.) and first author (T.A.J.) discussed and reviewed the refined codes, exploring the grouping and themes developing. Categories obtained were discussed by all authors and agreed for analysis.

Figure 2. Braun and Clark (2006) inductive analysis.

Figure 2

RESULTS

Fifteen participants were interviewed, 40% female and 60% male. The average age was 63 years old and average body mass index 38.6 kg/m2 (considered overweight or obese with a body mass index > 30 kg/m2). The average AHI of 46.1 events/h indicates a diagnosis of severe sleep apnea within the group (AHI > 30 events/h) with an average Epworth Sleepiness Score 12/24 (Table 1).

Categories obtained from clustering the codes identified 4 themes. Table 3 summaries the themes, and theme description obtained during the interviews.

Table 3.

Themes from qualitative interviews.

Theme Description
Getting a OSA diagnosis Patients described their symptoms before having a diagnosis and the reasons for seeking medical advice about their condition.
Adapting to CPAP treatment Patients described the challenges of CPAP treatment, side effects, and difficulties adapting to the treatment. Patients also described the improvement in their symptoms once adherent with CPAP and the importance of family and clinician support during treatment.
CPAP and monitoring pathways Patients described their experience of the individual pathways depending on the arm of the study they were randomized to. This included their experience of face to face follow-up appointments, virtual appointment (telephone), and the use of telemedicine to support their treatment.
COVID-19 and CPAP treatment Patients described what it was like to have treatment during a pandemic, how this effected they referral process for treatment and the experience of receiving treatment during this time and the use of technology.

CPAP = continuous positive airway pressure, OSA = obstructive sleep apnea.

Theme 1, getting an OSA diagnosis

Prediagnosis of OSA all interviewees listed several symptoms that they had been struggling with for some time before seeking medical advice. These symptoms included, breathing issues, cardiovascular events such as heart attack, strange dreams, headaches, nocturia (waking at night to urinate), and previous accidents. Tiredness was the largest reported symptom by patients with 18 references made concerning daytime sleepiness, tiredness, and dozing off.

  • “The reason I’m on a CPAP machine is I crashed my car. On the 16th of December last year just before Christmas there was no one else involved but I nodded off at the wheel and hit a 6-foot brick wall.” (ID88)

  • “Late evening, I would nod off and wake up really with a headache.” (ID15)

  • “I was suffering from tiredness; I was always tired I never seem to have any get up and go.” (ID69)

Numerous patients admitted that they only sought medical advice following family or friends’ encouragement or “nagging” and that often their symptoms had been evident for many years. Many of the patients who sought medical advice suspected they may have sleep apnea and therefore you could assume they would be prepared for a positive diagnosis of OSA. However, some patients were stilled surprise about receiving the diagnosis and the implications of treatment.

  • “My wife said that I’ve had this sleep apnea for years and years.” (ID58)

  • “My wife and my daughter ganged up on me and told me to go and get it (OSA) sorted.” (ID58)

  • “My friends were saying they always knew (I had sleep apnea).” (ID54)

  • “They wired me all up and I was waking up 58 times an hour and then they dropped their little bombshell of sleep apnea.” (ID88)

  • “I thought the investigations (sleep study) would come back fine.” (ID68)

Although the symptoms of sleep apnea are well documented and known to clinicians the impact to the patient is not always understood and can vary depending on the patient’s experience.

Theme 2, adapting to CPAP treatment

Starting CPAP treatment comes with many challenges with patients expressing both negative and positive experiences. Symptom control was a priority for most patients. When first starting CPAP there are often reported side effects or challenges with treatment. These can include discomfort associated with the mask and CPAP pressures, including the air being swallowed and causing bloating.1 Some participants felt the CPAP device itself was big and bulky and would be difficult to carry around if going on holiday or when having to work away. Several patients also commented on the noise from the CPAP motor and felt it was disruptive and kept them awake. Mask issues were often to do with comfort, leaking of the air into the eyes and soreness to the bridge of the nose from the pressure of the mask.

  • “It can be quite noisy and I do a lot of travelling for work normally…though I haven’t (travelled) for the last 18 months. It’s not very portable.” (ID51)

  • “Creates pressure on the top of my nose and I now have a permanent indentation on my nose, I also have a beard so if I don’t have it very tight, I get too much leakage.” (ID69)

  • “I’ve only noticed it in the last couple of months, some bloating and a kind of tight stomach sometimes.” (ID15)

  • “I found that I had a dry mouth.” (ID19)

  • “I just couldn’t get on with the mask it was very uncomfortable.” (ID63)

As well as the discomfort associated with CPAP treatment, one patient highlighted the impact of loss of intimacy due to the treatment. He felt that this took away the spontaneity in the bedroom and could affect the closeness that he previously had with his wife before CPAP. He did however acknowledge the benefits to his health and daytime symptoms “outweighed” the negatives.

  • “Well, it does sort of curtail your love life and does take spontaneity out of a kiss and a cuddle, but the benefits far outweigh the negatives.” (ID88)

Regardless of patient motivation and the patient’s desire to obtain a diagnosis to explain their ongoing symptoms, coming to terms with a lifelong condition and the requirement for CPAP treatment, can and does have psychological implications for some patients and their family. Patients often described feelings of “being scared,” “traumatized,” and “being anxious,” with one patient explaining that wearing the device brought on a panic attack requiring her to call for an ambulance. Even once the initial stages of CPAP are conquered and adherence is achieved, this does not take away the fact that many of the patients still do not like CPAP treatment.

  • “I think sometimes you (the sleep team) could possibly lose touch with the sheer anxiety of it in the initial stages.” (ID28)

  • “Still don’t like it to be honest but then who does.” (ID19)

  • “I don’t like having to wear this thing at night, but I do see the value of it.” (ID45)

Many patients including the ones who describe initial problems with treatment, also went on to describe the positive impact of using CPAP. All patients commented on the improvement in their symptoms following the use of CPAP. The greatest observation was the improvement in daytime sleepiness, fatigue, and an improvement in the quality of sleep. There was a general feeling of patient satisfaction in the treatment and the positive improvement in how they felt and the effect on day to day living. This was supported by terms such as “life changing, huge benefit and life saver.”

  • “I’m getting back to six hours sleep now compared with something like 10–12 hours before treatment.” (ID28)

  • “It’s completely changed my life. Wake up refreshed and good to go in the day.” (ID58)

  • “I know its crucial to my wellbeing.” (ID28)

  • “I feel more alert.” (ID63)

  • “I feel a lot better and more alert mentally.” (ID78)

  • “I saw immediate results in my energy levels.” (ID68)

It was evident from the participants responses that personal motivation had a large impact on their success with treatment. They recognized the challenges but tried to embrace the treatment and “keeping going.” Support when starting CPAP appeared to make a difference when coming to terms with treatment and obtaining adherence. Support took several forms including clinician support in the form of telephone and face to face appointments. Family support also had a positive impact. Some patients also accessed support via the internet and Facebook in the form of support groups such as “Hope to Sleep.” Participants in Arm 3 who also had access to their own CPAP data via DreamMapper reported how they felt engaged in decision making and ownership of their own treatment. This helped to motivate them to manage their adherence to treatment.

  • “Just talked to myself, I’m a very practical down to earth person and I thought to myself this is keeping me alive and keeping me in the real world I want wear it.” (ID54)

  • “If I had trouble using it your colleagues came up with solutions that worked and I was very pleased.” (ID45)

  • “It was really helpful and still is to check in with the app (DreamMapper) each morning.” (ID68)

Although most patients struggled with initial CPAP treatment, there were a small number of patients who found the experience easy and settled into treatment without any problems and felt the improvement in their symptoms instantly. This was unusual with most interviewees needing time and support at the beginning of treatment to achieved adherence to treatment.

  • “I’m just into it, it’s been fantastic and brilliant. I didn’t find it a chore, I wasn’t worried about it and now it’s just routine, I go to bed put the mask on and away you go, is brilliant.” (ID58)

Theme 3, CPAP and monitoring pathways

Patients were randomized to 1 of 3 arms, due to the difference in the interventions in each arm not all participants were able to comment on the questions asked during the interview and therefore these questions were excluded (Table 1) for some of the participants. It is known that adherence to treatment is difficult and the use of telemedicine interventions are gaining support.8,10,18 It was therefore important to explore the participants experience of these different pathways for monitoring adherence to treatment but also to gain an understanding of the barriers that many occur when introducing telemedicine.

Face-to-face appointments received positive responses with several patients surprised that these were still available due to the COVID restrictions during the time of the study. Some patients felt that a telephone appointment lost the “human element” and removed the cues gained from seeing people’s facial expressions and gestures. There was a lot of support for the close relationship that people associated with seeing their clinician face-to-face. Traditionally the medical model within the UK is a face-to-face appointment with the clinician, therefore we can surmise that this be more familiar to patients and therefore possibly feels more natural.

  • “I much prefer talking to people face to face it’s just generally me, maybe because I can see people’s facial expressions, you can kind of judge how the conversations going.” (ID88)

  • “I found the whole experience easy and was very pleased with the appointment (face-to-face).” (ID58)

Due to COVID-19, virtual appointments via telephone or online platforms such as via Teams have become normal in both primary and secondary care but the question arises as to whether this works for the patient? Unlike face-to-face appointments whereby the participants did not express any negative experiences, there were very differing opinions on virtual appointments. Participants expressed both negative and positive views with no clear consensus. Some patients liked the more flexible approach which allowed the appointment to be organized around work and without having to travel to the hospital and reducing time off work. During a time when many older or vulnerable patients were isolating, virtual appointments allowed continuing support by the clinician to ensure adherence with treatment. This provided a sense of safety for these patients whereby they could be reviewed by the clinician from their “own sofa.”

  • “Virtual appointments have been great for me because I have mobility issues and anxiety issues, so it’s just lovely for me being in my own comfort zone, much easier especially with COVID.” (ID77)

  • “(Virtual appointment meant) Rather than sitting in the hospital waiting two hours for your appointment so if we could maintain that it would be brilliant.” (ID69)

However, there were patients who did not like the experience of virtual clinics and felt that the change was to suit the clinical staff more than the patient. One male participant who worked in technology and you could surmise would embrace technology, felt incredibly strongly about virtual appointments and the reliance on technology removing the clinician experience and knowledge. He did not feel that virtual appointments should substitute the face-to-face appointment and clinical relationship.

  • “The pressures that the medical professionals are under they just want to get through their list.” (ID15)

  • “If you dehumanize it (NHS) and depersonalize it, if you outsource care to technology, it’s just disastrous. I think the technologies substitute for human engagement is just disastrous to be honest it’s probably a in the waste of money for most people.” (ID45)

  • “Telephone is ok, but I would prefer zoom as better to be able to look at someone.” (ID15)

The use of telemedicine and the use of virtual appointments (Arm 2 and Arm 3) to support patients relies on data management, information governance, secure transmission of patient data, and the use of cloud-based web sites and applications that store the patient data. Using these telemedicine interventions, the data from the CPAP machine could be viewed allowing the checking of patients’ adherence (hours used), mask fitting (leak), AHI score, and average device pressures. Patients were asked their views on their personal data being transmitted, who was accessing the data and data protection and security.

Patients had no concerns over how their data was used and seemed unfazed by the transmission of data. Many patients treated their data with little regard and considered themselves “boring” and therefore why on earth would anyone be interested in their information. Patients felt that they had “nothing to hide” and therefore why would they worry about data being shared. Patients were happy to share their information if it helped to improve the treatment of others, improve the equipment and the information received from the machines.

  • “I’m sure people know lots about me, doesn’t bother me I’ve got nothing to hide.” (ID68)

  • “I’m sure it’s all covered by data protection, it’s not the sort thing that you’re going to end up on TikTok and let’s face it if I was an international celebrity, yeah maybe I might be bothered a bit more but really.” (ID88)

  • “I’m not worried about the data, as I say if it goes to improve your machines or technology going forward let’s just focus on that.” (ID51)

The development of smart applications allowing patients to access their own CPAP data, set their own targets and find tips to good treatment is still fairly new. It offers the ability to manage one’s own health and treatment via a smart device such as a telephone or tablet. Five interviewees had access to the application during their CPAP treatment. The overwhelming feedback was the ability to manage and understand one’s own treatment and knowing that the clinician that was there “monitoring” was very reassuring. However, there was 1 participant who felt that the older generation, such as his parents, may struggle with technology as they do not own a smartphone and struggle using a computer.

Patients reported that they used the application to monitor the hours they used the CPAP machine, AHI score, average pressure of the CPAP device, checking for any leak from the CPAP mask, with this information supporting them in managing their treatment. Although one gentleman did comment on his concerns around over reliance on the application and almost becoming obsessed with checking daily.

  • “Completely useful, it is now become a habit I just sync it up (DreamMapper) each morning, I can see what the machine says in terms of sleep efficiency…I can just keep a track of things. I’m just in a routine now.” (ID58)

  • “My wife, she was getting quite annoyed with me when I kept on saying I only wake up three times in the night. I did try to cut down on looking at the app.” (ID88)

  • “I was very interested in the app and checking to see how the CPAP was helping me.” (ID78)

  • “It was straight forward to download the results.” (ID68)

  • “I’m embracing technology (since COVID).” (ID28)

Patients who did not have access to the smart application (Arms 1 and 2) did express a desire to have access to their own data and felt that it would have supported their treatment in the early days and possibly would have made the process less challenging.

  • “I would have used it (the smart app).” (ID63)

Theme 4, COVID-19 and CPAP treatment

Participants were asked during interview to explore their OSA journey and the possible impact of COVID-19, if any on their treatment. Patients expressed concerns and frustration when trying to access diagnostic tests and treatment for their sleep apnea with most citing COVID-19 as a large factor for the delays. Several patients commented on delays in seeing their general practitioner for advice about their ongoing symptoms such as tiredness which led to delays in diagnosis of their OSA.

  • “There was some delay on getting diagnosed and getting my first appointment and it would have been very easy for me to be put off.” (ID15)

  • “You could blame on COVID and the delay in appointment.” (ID88)

There was also a consensus that people were “put off” from seeking help during COVID-19 due to the pressures on the hospitals and therefore delaying diagnosis of their sleep apnea and possible treatment.

  • “People get put off so easily and you know if you’re not careful we will have a whole load of people with undiagnosed problems.” (ID 15)

One patient focused on the use of CPAP to treat patients with COVID-19 and therefore felt that if he caught COVID-19 he would now be “safe” as he already had a CPAP device. One patient who had COVID-19 during his CPAP treatment was able to continue as normal with his device.

  • “CPAP machines were used in hospital for COVID cases, so I told everyone I met that I was now COVID ready!” (ID 88)

  • “I was positive for COVID but I had no adverse effects and continued to use my CPAP.” (ID54)

Patients who may not have used technology prior to COVID-19 appeared to start embracing technology and therefore this possibly increased engagement with the CPAP smart application and virtual appointments that may not have been the case if the study was prior to 2019.

  • “Before COVID there was never a need (to use technology)…I was forced into it…I didn’t think I could do it…my tablet is fabulous, my friend, I turn the lights on and off and monitor my CPAP which is very reassuring.” (ID28)

DISCUSSION

To the authors’ knowledge this is the first study to explore the patients experience of CPAP and telemedicine interventions during COVID-19 with previous research highlighting that patient experience is often neglected.19 All participants described the effect of having sleep apnea not just on themselves but also their family and friends with previous studies finding reduced quality of life and sleep quality for both patients and their bed partners.27,28 Participants reported the challenges of CPAP treatment which have previously been reported as reasons for nonadherence to treatment.12 However, participants highlighted the significant benefits when using CPAP, including improved daytime tiredness, reduced fatigue and improved quality of life. Simon et al (2024) supported these findings and reported that the challenges associated with CPAP, although not the primary reason for nonadherence, are important to patients and therefore should be routinely addressed.20 There also was a common theme around the significance of support from family and friends, both with receiving a diagnosis and starting CPAP treatment. Patients placed an importance on positive support from people around them in helping them adjust to CPAP treatment and to achieve adherence. Luyster et al (2016)29 found that emotional support from a partner was “instrumental” and associated with increased CPAP adherence in patients diagnosed with severe sleep apnea.

Rodges (2014)30 found that not just partner support, but also clinical support was the biggest predictor to CPAP success. Participants within this study expressed a high satisfaction with the support from clinicians and from the telemedicine interventions. In both telemedicine arms, the modem group (Arm 2) and the modem with the smart device application (Arm 3) the participants felt reassured that their clinician could access their data should they need further support and the patients with the application felt that they had some control over their own health and management of their condition. This is consistent with previous findings of patients wishing to be more involved in their care.29 Participants who did not receive any telemedicine support expressed their desire to have access to their own data (Arms 1 and 2). There were no concerns expressed about patient data management and the sending of data to a cloud-based system from the CPAP device. Although nearly all participants found starting CPAP troublesome with one patient’s initial CPAP use being quite traumatic, all commented on the positive improvement in symptoms following treatment and their willingness to continue with treatment. Patients were followed up either face-to-face or via telephone and there were mixed experiences concerning the use of telephone (virtual) appointments. All participants who attended face-to-face were satisfied with the support and happy to attend the appointment. This included patients who may have been more cautious due to being vulnerable and isolating due to COVID-19 restrictions. Patients reported that they felt safe attending the hospital and were happy that they were still able to receive treatment during the pandemic.

There were differing opinions of virtual appointments. For many, virtual appointments allowed support from the clinician without attending the hospital. However, there were several patients who expressed concerns with virtual appointments and the loss of that clinician-patient relationship. There was a feeling that the change being made was not for the better but to suit the professionals who have increased work pressures. The patients who expressed concerns around virtual appointments did however support the use of telemedicine allowing them to be actively involved in their care, but wanted to maintain the face-to-face clinical appointments.

The biggest impact due to the pandemic appeared to be delays to services. The findings suggest this was due to 2 reasons, either delays in referral for diagnostic testing or patients themselves avoiding referral due to being “put off” attending their general practitioner or hospital. Certainly, during this time, the general population were being asked by the UK Government31 to “to stay at home in order to protect the NHS and save lives.” Kılıçparlar Cengiz et al32 found a significant portion of patients already on CPAP during the pandemic were negatively affected with a significant number stopping treatment or not using it regularly, due to not being able to access sleep services. We can see from the participant responses that often they have symptoms for a long time before seeking medical advice and even then, only seek help due to family or friends encouraging them. It could be surmised that due to the general reluctance to seek medical advice that the added barrier of a pandemic may have contributed to avoiding attendance.

The use of telemedicine has a place in the treatment and monitoring of CPAP use in patients with OSA. It allows patients to be actively involved in their own treatment and health management, although previous studies have highlighted that this relies on patient engagement and their responsibility to seek advice when required.33 During a pandemic it offers a potential method of continued treatment and support without having to attend the hospital. This did offer many patients comfort knowing they had telephone access to their clinician. The mixed patient perspectives of face-to-face and virtual appointments does support a more patient-centered approach to treatment and reviews, adapting to the patient needs and preferences rather than clinician preference.

This was a sample size of 15 patients with 5 from each arm, and although data saturation was observed, this may be considered too small a sample to be representative of the general population. The patients selected for interview had been using CPAP successfully for 6 months, and therefore, due to high adherence to treatment, there may have been a positive bias toward the treatment. Future studies should include the experience of patients with poor adherence to treatment. The participants of the study were recruited from a white demographical location which does not truly represent the multiethnic diversity of the UK and therefore may not be transferable to other populations. The 15 interview participants average age was 63.2 years with a sex split of 1.5 males to 1 female (Table 1). Reported OSA in the general population is recorded as 2 males to 1 female2 and therefore the different proportion of males to females to the general populations in the study could have led to bias if males and females report different concerns. However, this has not been established in the current literature.

Due to interview data being collected during a pandemic, the information gathered could be considered to only be relevant to this moment in time. During the pandemic there was a shift in the use of technology due to lockdown and isolation meaning people who previously had not used smart devices started to embrace technology to maintain contact with their family. This shift and removing of the technological barrier during COVID-19 would have had an impact on acceptance of telemedicine.

Future research

Further qualitative studies investigating different telemedicine interventions and the patients experience focusing on evidence-based patient centered care is needed to truly understand the barriers to CPAP treatment.

DISCLOSURE STATEMENT

All authors have seen and approved this manuscript. Institution research performed: Isle of Wight National Health Services Trust, St Mary’s Hospital, Isle of Wight. The authors report no conflicts of interest.

ACKNOWLEDGEMENTS

This research was supported by the interviewees who took part in the study, the sleep team, St Mary’s Hospital Isle of Wight and University of Portsmouth, School of Health and Care Professions.

ABBREVIATIONS

AHI

apnea-hypopnea index

COVID-19

coronavirus disease 2019

CPAP

continuous positive airway pressure

ID

identification

OSA

obstructive sleep apnea

UK

United Kingdom

REFERENCES

  • 1. National Institute of Clinical Excellence . Continuous positive airway pressure for the treatment of obstructive sleep apnea/hypopnoea . Published 2008. . Accessed June 2023. https://www.nice.org.uk/guidance/ta139/chapter/1-guidance .
  • 2. Stradling JR, Davies RJO . Sleep: obstructive sleep apnoea/hypopnoea syndrome: definitions, epidemiology, and natural history . Thorax. 2004. ; 59 ( 1 ): 73 – 78 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 3. Marin J, Carrizo S, Vicente E, Agusti A . Long-term cardiovascular outcomes in men with obstructive sleep apnoea—hypopnoea with or without treatment with continuous positive airway pressure: an observational study . Lancet. 2005. ; 365 ( 9464 ): 1046 – 1053 . [DOI] [PubMed] [Google Scholar]
  • 4. Young T, Peppard PE, Gottlieb DJ . Epidemiology of obstructive sleep apnea: a population health perspective . Am J Respir Crit Care Med. 2002. ; 165 ( 9 ): 1217 – 1239 . [DOI] [PubMed] [Google Scholar]
  • 5. Young T, Palta M, Dempsey J, Skatrud J, Weber S, Badr S . The occurrence of sleep-disordered breathing among middle aged adults . N Engl J Med. 1993. ; 328 ( 17 ): 1230 – 1235 . [DOI] [PubMed] [Google Scholar]
  • 6. Heinzer R, Vat S, Marques-Vidal P, et al . Prevalence of sleep-disordered breathing in the general population: the HypnoLaus study . Lancet Respir Med. 2015. ; 3 ( 4 ): 310 – 318 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 7. Franklin KA, Sahlin C, Stenlund H, Lindberg E . Sleep apnoea is a common occurrence in females . Eur Respir J. 2013. ; 41 ( 3 ): 610 – 615 . [DOI] [PubMed] [Google Scholar]
  • 8. National Institute of Clinical Excellence . Obstructive sleep apnea/hypopnoea syndrome and obesity hypoventilation syndrome in over 16’s . Published 2021. . Accessed June 2023. https://www.nice.org.uk/guidance/ng202 .
  • 9. Scottish Intercollegiate Guidelines Network . Management of obstructive sleep apnea/hypopnoea syndrome in adults . Published 2003. . https://www.sign.ac.uk/our-guidelines/management-of-obstructive-sleep-apnoeahypopnoea-syndrome-in-adults/ .
  • 10. Singh J, Badr MS, Diebert W, et al . American Academy of Sleep Medicine (AASM) position paper for the use of telemedicine for the diagnosis and treatment of sleep disorders . J Clin Sleep Med. 2015. ; 11 ( 10 ): 1187 – 1198 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11. Sawyer A, Gooneratne N, Marcus C, Ofer D, Richards K, Weaver T . A systematic review of CPAP adherence across age groups: clinical and empiric insights for developing CPAP adherence interventions . Sleep Med Rev. 2011. ; 15 ( 6 ): 343 – 356 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12. Engleman H, Martin S, Douglas N . Compliance with CPAP therapy in patients with the sleep apnoea/hypopnoea syndrome . Thorax. 1994. ; 49 ( 3 ): 263 – 266 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 13. Sauter C, Asenbaum S, Popovic R, et al . Excessive daytime sleepiness in patients suffering from different levels of obstructive sleep apnoea syndrome . J Sleep Res. 2000. ; 9 ( 3 ): 293 – 301 . [DOI] [PubMed] [Google Scholar]
  • 14. Turino C, de Batlle J, Woehrle H, et al . Management of continuous positive airway pressure treatment compliance using telemonitoring in obstructive sleep apnoea . Eur Respir J. 2017. ; 49 ( 2 ): 1601128 . [DOI] [PubMed] [Google Scholar]
  • 15. Stepnowsky C, Edwards C, Zamora T, Barker R, Agha Z . Patient perspective on use of an interactive website for sleep apnea . Int J Telemed Appl. 2013. ; 2013 : 239382 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 16. Sparrow D, Aloia M, DeMolles D, Gottlieb D . A telemedicine intervention to improve adherence to continuous positive airway pressure: a randomised controlled trial . Thorax. 2010. ; 65 ( 12 ): 1061 – 1066 . [DOI] [PubMed] [Google Scholar]
  • 17. Fox N, Hirsch-Allen AJ, Goodfellow E, et al . The impact of a telemedicine monitoring system on positive airway pressure adherence in patients with obstructive sleep apnea: a randomized controlled trial . Sleep. 2012. ; 35 ( 4 ): 477 – 481 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18. Jones T, Roddis J, Stores R . The use of telemedicine in the management of continuous positive airway pressure for the treatment of obstructive sleep apnoea: a randomised controlled trial . Telemed J E Health. 2024. ; 30 ( 1 ): 157 – 165 . [DOI] [PubMed] [Google Scholar]
  • 19. Ward K, Hoare KJ, Gott M . What is known about the experiences of using CPAP for OSA from the users’ perspective? A systematic integrative literature review . Sleep Med Rev. 2014. ; 18 ( 4 ): 357 – 366 . [DOI] [PubMed] [Google Scholar]
  • 20. Simon SL, Stephenson JJ, Haynes K, et al . The lived experience of positive airway pressure therapy in patients with obstructive sleep apnea across the lifespan: a qualitative study . J Sleep Med. 2024. ; 20 ( 3 ): 407 – 416 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 21. COVID-19: epidemiology, virology and clinical features . Published 2022. . Accessed June 2023. https://www.gov.uk/government/publications/wuhan-novel-coronavirus-background-information/wuhan-novel-coronavirus-epidemiology-virology-and-clinical-features .
  • 22. American Academy of Sleep Medicine . The AASM COVID-19 Task Force . Published January 2021. . Accessed July 2023. https://aasm.org/update-covid-19-task-force-january-2021/ .
  • 23. Berry RB, Albertario CL, Harding SM, et al; for the American Academy of Sleep Medicine. The AASM Manual for the Scoring of Sleep and Associated Events: Rules, Terminology and Technical Specifications. Version 2.5 . Darien, IL: : American Academy of Sleep Medicine; ; 2018. . [Google Scholar]
  • 24. Hennink M, Kaiser B . Sample sizes for saturation in qualitative research: a systematic review of empirical tests . Social Sci Med. 2022. ; 292 : 114523 . [DOI] [PubMed] [Google Scholar]
  • 25. Braun V, Clarke V . Thematic Analysis: A Practical Guide. London, United Kingdom: : SAGE; ; 2022. . [Google Scholar]
  • 26. Braun V, Clarke V . Using thematic analysis in psychology . Qual Res Psychol. 2006. ; 3 ( 2 ): 77 – 101 . [Google Scholar]
  • 27. Parish JM, Lyng PJ . Quality of life in bed partners of patients with obstructive sleep apnea or hypopnea after treatment with continuous positive airway pressure . Chest. 2003. ; 124 ( 3 ): 942 – 947 . [DOI] [PubMed] [Google Scholar]
  • 28. McArdle N, Kingshott R, Engleman HM, Mackay TW, Douglas NJ . Partners of patients with sleep apnea/hypopnea syndrome: effect of CPAP treatment on sleep quality and quality of life . Thorax. 2001. ; 56 ( 7 ): 513 – 518 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 29. Luyster FS, Dunbar-Jacob J, Aloia MS, Martire LM, Buysse DJ, Strollo PJ . Patient and partner experiences with obstructive sleep apnea and CPAP treatment: a qualitative analysis . Behav Sleep Med. 2016. ; 14 ( 1 ): 67 – 84 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 30. Rodges B . Breaking though limbo: experiences of adults living with obstructive sleep apnea . Behav Sleep Med. 2014. ; 12 : 183 – 197 . [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 31. COVID-19: health and wellbeing . Published 2020. . Accessed November 2023. https://www.gov.uk/government/publications/full-guidance-on-staying-at-home-and-away-from-others .
  • 32. Kılıçparlar Cengiz E, Neyal A, Ekmekyapar Fırat Y, Neyal AM . The effect of the COVID-19 pandemic on the follow up of the PAP treatment in patients with obstructive sleep apnea syndrome . J Turk Sleep Med. 2022. ; 9 ( 3 ): 204 – 208 . [Google Scholar]
  • 33. Watach AJ, Hwang D, Sawyer AM . Personalized and patient-centered strategies to improve positive airway pressure adherence in patients with obstructive sleep apnea . Patient Prefer Adherence. 2021. ; 15 : 1557 – 1570 . [DOI] [PMC free article] [PubMed] [Google Scholar]

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