Information and support

National Guideline Centre (UK)

Information and support

Obstructive sleep apnoea/hypopnoea syndrome and obesity hypoventilation syndrome in over 16s

Evidence review O

NICE Guideline, No. 202

Authors

National Guideline Centre (UK).

London: National Institute for Health and Care Excellence (NICE); 2021 Aug.

ISBN-13: 978-1-4731-4229-9

1. Information and support

1.1. Review question: What information and support do people and their families or carers need (for example, advice on lifestyle, driving and occupation, and their treatment)?

1.2. Introduction

NICE has developed guidance on patient experience in adult NHS services that includes recommendations on information for patients (CG138). It is also important to identify and address the unique needs of people who are being considered for a diagnosis of obstructive sleep apnoea/ hypopnoea syndrome (OSAHS), obesity hypoventilation syndrome (OHS) or COPD-OSAHS overlap syndrome, and those who have a diagnosis of OSAHS, OHS or COPD-OSAHS overlap syndrome and are receiving care and monitoring. Currently some of this information is available on national websites, such as the Sleep Apnoea Trust Association, the British Lung Foundation, the Drivers and Vehicle Licensing Association (DVLA). Each hospital may have its own locally written information to distribute to patients in clinic or for example when commencing CPAP therapy. This local information may differ between centres, reflecting local practice, but there is no national standard for this information.

An evidence review was undertaken to try to find out what specific information people with OSAHS, OHS or COPD-OSAHS overlap syndrome should be given.

For full details see the review protocol in appendix A.

1.3. Characteristics table

Table 1

PICO characteristics of review question.

1.4. Qualitative evidence

1.4.1. Included studies

OSAHS

Twenty five qualitative studies were included in this review;⁷^, ⁸^, ¹⁰^, ¹¹^, ¹³^, ¹⁵^, ¹⁷^, ²⁰^, ²³^, ²⁴^, ³²^, ³³^, ⁴⁴^, ⁴⁶^–⁴⁹^, ⁵¹^–⁵⁸ this is summarised in Table 2 below. All studies included in the review were looking at adult patients with OSAHS.

This review covered following themes:

type and format of information
communication between patients and healthcare professionals
experiences of CPAP use
factors influencing behaviour change
factors influencing seeking treatment
factors influencing partners support.

There were no studies identified about advice on driving and occupation.

OHS

There were no studies identified looking at patients with OHS.

COPD-OSAHS overlap syndrome

There were no studies identified looking at patients with COPD-OSAHS overlap syndrome.

1.4.2. Excluded studies

See the excluded studies list in appendix E.

1.4.3. Summary of clinical studies included in the evidence review

Table 2

Summary of studies included in the evidence review.

See Appendix D for full evidence tables

1.4.4. Narrative summary of review findings

1.4.4.1. Content of information

Review finding 1: Type and format of the information (5 studies)

Brochures and videotapes. Both high level and low level readers stated that they wanted brochures and videotapes that explained treatment and outcomes information using simple terms. Patients also felt that information about outcomes is more important than pathophysiology of the disease.

Treatment options. Patients suggested more information on treatment options (they specifically requested better explanation of surgical options) and what preparation they should expect for their polysomnogram. Specific concerns about polysomnogram included the attire for testing and what would happen if they needed to get up during the night.

Feedback from other patients. Several patients wanted feedback from patients who had the same treatments.

More information - Participant responses indicated a desire to have more information when receiving the diagnosis for the first time, including an explanation of the implications of having OSA diagnosis, the risks of not adhering to therapy, and how to use the PAP device.Clarity of information. The suggestion was made to include clear and complete steps of treatments, choosing words that are simple and relative to the patient’s concerns.

Ethnic representation. More ethnic representation was requested from number of patients; patients wanted to be able to identify with the patient used as an example.

New user support programme. Patients and partners suggested format options and important components that would be valuable in developing a program to help first-time CPAP users feel comfortable using CPAP. Small group sessions led by a respiratory therapist and/or a current CPAP user or an online video were identified by patients as optimal formats for providing the program.

Peer support. A number of participants suggested practical ways to disseminate information about sleep apnoea and its treatment within the community. “Organize a group. If you could go in and find out who’s not sleeping and focus on them”.

Personalised information. Patients felt that it would be helpful to have treatment information tailored to their needs, including information on the negative impact of treatment on comfort and convenience and disclosure about common barriers to adherence.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.4.2. Communication between patients and healthcare professionals (2 studies)

Review finding 1: Confidence building

Structure building – Greeting the patient in an open and friendly way, when showing him or her into the room was expressed as an important structure - building aspect at the beginning of the communication process.

Information transfer - A warm and positive clarification of the reason for the visit, as made by the healthcare personnel, commonly initiated the information transfer.

Commitment – Patients felt that an understanding, but at the same time committed and informative response from the healthcare personnel, was essential to empower the patients to be active and elicit their own perspective of OSAS and CPAP at the beginning of the consultation.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

Review finding 2: Confidence hindering

Organisational insufficiency - for example a long waiting time before the appointment followed by unprepared healthcare personnel who went straight to the topic (e.g. The type of CPAP mask) without greeting the patient, or failing to explore the patient’s perspective on the reason for the appointment (e.g. not asking about symptoms).

Stress behaviour/interaction deficit - This stressed behaviour, sometimes further emphasised by healthcare personnel who did not seem to know or remember the patient’s specific history and needed to check the medical record several times, caused an interaction deficit that had a negative effect on the patient’s confidence and negatively affected the communication at the beginning of the consultation.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.4.3. Experiences of CPAP use (8 studies)

Review finding 1: Facilitators of CPAP use

The CPAP patient’s partner aiding diagnosis and treatment – participants emphasized that the positive role that the partner played in aiding the diagnosis and treatment process. Couples working together using CPAP, perceived benefits of CPAP for both partners, the patient being motivated to use CPAP for the partner, Support provided by the partner for CPAP use.

Becoming used to CPAP – patients who remained motivated and persevered with the choice to use CPAP started becoming used to CPAP. Participants made adaptations to integrate CPAP into daily life choosing new routines. Once the challenges of using CPAP had receded, getting used to CPAP became relatively straightforward. In the presence of time and perseverance, mastering CPAP became possible. CPAP became normal and routine part of life that no longer required conscious effort but retained importance in maintaining good sleep for users and partners.

Meeting adherent CPAP users - The data indicate that people who know CPAP users that are pleased with the device and use it regularly are more likely to try the device whereas people who only know nonusers are less likely to try it. Still, as the previous section described, although knowing adherent CPAP users may influence people’s willingness to try PAP therapy, it does not ensure long-term Adherence.

Finding other treatment options unsatisfactory - respondents found some relief by using these alternative options, the rest said that at the time of the interview, they had not yet found an effective treatment. These respondents stated that “the next step” would be to try (or retry) the CPAP.

Getting a new life – All of the patients experienced a positive difference with CPAP and life improved in a lot of different ways – they slept better, were more alert and had more energy to do more things than before.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

Review finding 2: Barriers of CPAP use

Anxiety related to CPAP treatment - particularly in the beginning of therapy, bothersome equipment causing disruptions in sleep and bedtime routine, interruptions to intimacy, concern about image change while wearing CPAP.

Feeling uncertain about the role of CPAP in improving symptoms and quality of life - adherent CPAP users were generally pleased with the device’s effects on their daytime and night-time symptoms. They felt more rested and energetic during the day and experienced fewer awakenings at night. Respondents addressed the improvement in symptoms and quality of life as one of the major benefits of the device. However, they did not credit the improvement in their condition solely to the device. Rather, they kept pondering whether other factors, such as reduced stress due to retirement or reduction in workload, as well as weight loss and exercise, contributed to their recuperation. In other words, in spite of the benefits they obtained, they were ambivalent about the exact role of CPAP in what they called their “recovery” or “improvement.”

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.4.4. Factors influencing behaviour change (2 studies)

Review finding 1: Physical activity

Consequences of OSA and obesity – The majority of informants were aware that OSA and obesity could lead to medical problems, such as heart disease. On the other hand, most informants stated that it did not occupy their thoughts, and there were even statements that revealed an explicit ignorance of such risks.

Positive outcomes – positive outcomes included physical and medical benefits. For example, less pain, reduced weight, and reduced risks for medical diseases were mentioned. Another positive outcome was enhanced personal well-being, expressed as positive feelings from physical activity or enhanced health.

Side effects of physical activity – were expressed as bodily sensations such as pain, exertion, or unpleasant sensations from the heart of exercising. Another unwanted side effect was lack of time or running out of time. Those mentioning this side effect expressed that they already had too much to do and that adding physical activity would only stress them further.

Ambivalence – some statements indicated ambivalence of informants regarding the outcome expectations and motivators for enhanced physical activity. Some informants described several expected outcomes, but were doubtful about obtaining them for themselves, since they had not experienced it to date.

Review finding 2: Facilitators and barriers for eating behaviour changes

Barriers – Desire and reward (needing to satisfy the desire for food and compensating the desire for tabacco), cravings and emotional control (eating as a tool to control feelings), low self-confidence (not being able to cope with the problem), insufficient support (wanting support), taxing behaviours (demanding and time cosuming), cost (too expensive), lack of knowledge about healthy eating strategies, perceived helplessness (not feeling able to affect one’s own situation), and low susceptibility were considered as barriers for eating behaviour changes.

Facilitators – Positive expectations (results and expectations are motivating), fear of negative consequences (expecting consequences), experience of success (good self-confidence), support and follow up (support from family, peers and professionals), accessibility (time and readily available healthy food), applied skills for healthy eating (knowledge about healthy food), personal involvement (wanting to be in control), challenged self-image (not recognising oneself ) were considered as facilitators for eating behaviour changes.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.4.5. Factors influencing seeking for treatment (5 studies)

Ignorance - Ignorance was defined as a lack of awareness about the underlying causes of sleepiness, and the potential risks of sleepy driving, and a lack of knowledge about the availability of treatment services for OSAS. It included both driver ignorance and ignorance among medical professionals. The following excerpts typify driver ignorance.

Personal fear - was characterised by patients not wanting to believe that something is physically wrong, or being apprehensive about finding out about further or more serious health conditions that could compromise their ability to earn a living. A common element in this sub-theme was mistrust of other people’s concerns about the driver’s health.

Environmental Barriers to Evaluation for Obstructive Sleep Apnoea - When asked about barriers to having an overnight assessment for sleep apnoea, participants’ responses focused on environmental factors such as sleeping in a strange environment, being watched while they sleep, and not having a clear understanding of what the sleep assessment entails.

Attitudes towards their personal health - Drivers were found not to consider personal health a priority and as a consequence, to dedicate little or no time on maintaining it. Drivers described taxi-driving jobs in general as a profession that leaves little or no time for extra-curricular activities. Work is generally prioritized over family time

Patients’ reception of OSA diagnosis - While most of the participants did not reject their diagnoses completely, about a third expressed doubts and scepticism towards it. Some ‘doubters’ tended to prioritise symptoms (especially daytime sleepiness), and clinical signs (particularly obesity), implicitly or explicitly criticising the exclusion of these factors from the definition of OSA while relying on a specific image of the OSA patient as sleepy and obese. Other patients also disapproved of the diagnostic procedures and technology by suggesting that ‘laboratory sleep’ is not an accurate indicator of their quality of sleep at home.

Reasons for seeking medical care - the primary reasons were due to input from spouse/partner, another family member, or friend, the participant’s own concern about particular symptoms and/or falling asleep while driving. Small numbers also reported seeking medical attention due to having a comorbidity, falling asleep at work, having a car accident due to EDS, being required by an employer, and seeing a sleep study advertisement.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.4.6. Factors influencing partners’ support (4 studies)

Decisive situations influencing support negatively – 5 categories of decisive situations influencing support negatively, as described by partners, were identified: adverse effects (problems with the mask, feelings of panic and impaired sleep), limited effect (continuing symptoms and disappointment), practical and physiological problems (complicated routines, difficulty of using CPAP, shame, inhibited closeness), limited presence (being fatigued and being occupied) and initiation routines perceived as inappropriate (poor accessability, non-participation in CPAP tryout, poor knowledge).

Decisive situations influencing support positively- 4 categories of decisive situations influencing support positively, as described by partners, were identified: Well-functioning treatment (easy manageable routines, established habits), improvements (decreased number of apnoeas, improved sleep, increased alertness), high motivation (positive attitude to CPAP, understanding the risk of apnoeas andsecondary diseases ) and support from friends,family and healthcare personnel.

Managing of decisive situations – 4 categories of managing decisive situations that influenced the partners’ support were identified: letting the patient handle the treatment himself/herself (handling over practical aspects of treatment: avoid to help patient with routines and telling patient to adjust mask by himself/herself); helping patient to take responsibility for the treatment (giving advice so the patient can evaluate and solve problems by himself/herself, reminding the patient to clean the mask properly); handling of treatment together (showing supportive attitude so the treatment is used: providing positive encouragement about the positive effects of the treatment and supporting an openconversation with friends/family); and taking over handling of the treatment from the patient (making sure that treatment works practically: preparing the device, resolving problems and supervising that the device works). The same partner used different types of behaviours in different situations if needed.

Iconic cultural status of snoring, particularly for men, became evident in interviews. For male patients in particular, , comical representations of snoring in the popular culture made it difficult, and embarrassing, for them to talk about it seriously, and because of this perception, wives often struggled to push their partner to accept that their style of snoring was not normal.

Because of this perception, wives often struggled to push their partner to accept that their style of snoring was not normal.

Snoring in women - For women whose snoring might indicate apnoea, a different kind of danger became apparent, that “considerate” male spouses could feel compelled to downplay or underreport the symptom, as it’s not considered something that women are supposed to do. Male spouses could feel compelled to downplay or underreport the symptom of snoring, as it is not considered something that women are supposed to do.

Social adjustment - Social adjustment’ includes two categories that reveal different reactions to adjustments required by their partners’ symptoms. The first category ‘Limited circumstances’ describes a feeling of lack of control, i.e. social adjustments. This could mean that they experienced limited time for their daily activities, e.g. on those days that their partner was tired, they received less help at home. The spouses also felt that the time for their own activities was decreased. The second category, ‘same circumstances’, conversely describes how the spouses were able to see the social adjustments as less of an issue of lack of control and more as a challenging circumstance requiring compromise.

Sacrificing - Sacrificing was one way of managing everyday life for the spouses family and missed the support from their partners in getting help with everyday chores. The sacrifices the spouses did were connected with their partner’s tiredness and its consequences, but even their own tiredness led to their not having as much energy as earlier.

Controlling - Controlling was another way of managing the life situation. The spouses felt they needed to have control, in everyday life, as well as during the night, in relation to their partner’s OSAS. Control was their own choice, but was perceived as a necessity in relation to the worry and anxiety they felt about their partner’s OSAS symptoms.

Changing - Changing was also a way of managing the everyday life. To make do different types of changes could help both the spouses, as well as their partners. The spouses expressed both fear and anxiety about the future, both concerning their own and their partner’s health.

Understanding - Understanding meant that even how hard it was for the spouses in their everyday life, it was important to have an Understanding for their partners OSAS, as a way of managing the situation. Despite the anger over not being able to sleep properly and tiredness during the day, the spouses still described feelings of empathy as they felt sorry for their partner, because it was not his/her fault to suffer from OSAS. ‘It must be dead tough’.

Explanation of quality assessment: no methodological limitations in the contributing studies; no concerns about the coherence of the finding; no concerns about relevance; no concerns about inadequacy. There was a judgement of high confidence in this finding.

1.4.5. Qualitative evidence summary

Table 3

Summary of evidence – Type and format of the information.

Table 4

Summary of evidence – communication between patients and healthcare professionals.

Table 5

Summary of evidence – experiences of CPAP use (facilitators and barriers).

Table 6

Summary of evidence – Factors influencing behaviour change.

Table 7

Summary of evidence – Factors influencing seeking for treatment.

Table 8

Summary of evidence – Factors influencing partners’ support.

1.5. Economic evidence

The committee agreed that health economic studies would not be relevant to this review question, and so health economic evidence relating to this question was not sought.

1.6. The committee’s discussion of the evidence

1.6.1. Interpreting the evidence

1.6.1.1. The outcomes that matter most

The committee reviewed the evidence on what information and support do people and their families or carers need. Themes of interest, as stated in the protocol, were: advice on lifestyle, advice on driving and occupation, advice on treatment. Additional themes identified by the review were: type and format of the information, communication between patients and healthcare professionals, experiences of CPAP use, factors influencing behaviour change, factors influencing partners’ support.

1.6.1.2. The quality of the evidence

The committee noted that majority of the evidence was from the point of view of people suffering from obstructive sleep apnoea and their partners and there was little health professional input identified in the studies.

The quality of evidence was high. There were no concerns about methodological limitations and no concerns regarding coherence, relevance and adequacy.

No evidence was available for people with OHS and COPD-OSAHS overlap syndrome.

1.6.1.3. Findings identified in the evidence synthesis

OSAHS

There was evidence from 25 studies in adult patients with OSAHS.

There was some evidence on type/format of information, importance of support groups, facilitators and barriers to CPAP use, communication between patients and healthcare professionals, factors influencing behaviour change, factors influencing seeking treatment and factors influencing partners support.

The committee discussed that providing appropriate information for people with OSAHS, OHS and COPD-OSAHS overlap syndrome is essential to help them understand their condition and access support and treatment. Attendance for sleep investigations, such as respiratory polygraphy, is likely to be higher if patients understand why these are being performed and what they entail. The committee agreed that information about all aspects of treatment is likely to increase uptake and therefore effectiveness.

The committee used evidence from this review, their interaction with their patient networks and experiences of the lay members to inform their recommendations on what information should be given to the patients.

The committee agreed that there are two related areas that this information should address: information to inform the patient’s understanding of the condition, and information to help the patient make informed decisions about their care. The committee discussed that currently the information provided to patients is not always adequate to inform understanding of the condition and decision-making.

The evidence showed that people were found to be encouraged by friendly greeting, warm and positive clarification of the reason for a visit by the healthcare professional. People also expressed that at the beginning of the consultation understanding, but at the same time a committed and informative response from the healthcare personnel, was essential to empower the patients to be active and elicit their own perspective of OSAHS and CPAP.

The evidence identified that lack of awareness about the underlying causes of sleepiness, lack of knowledge about the availability of treatment services for OSAHS, attitudes towards their personal health and fear of not wanting to believe that something is physically wrong, or being apprehensive about finding out about further or more serious health conditions were key factors influencing patients’ decision in seeking for treatment.

The evidence showed that patients wanted to have more information when receiving the diagnosis for the first time, including an explanation of the implications of having OSA diagnosis, the risks of not adhering to therapy, and how to use the CPAP device. Patients preferred more information about outcomes than the pathophysiology of the disease. However the committee agreed that it was helpful to provide information on pathophysiology, as it would help patients better understand the condition and how treatment could improve the condition. The evidence showed that even though most patients were aware that OSAHS and obesity could lead to medical problems such as heart disease, they were not always aware of risks associated with OSAHS. The evidence showed that even though most patients were aware of negative consequences of obesity and sleep apnoea they were actively ignoring such risks.

Based on the evidence and their experience the committee agreed that personalised information should be given to patients on: OSAHS, its causes/risk factors, symptoms, diagnosis including information on sleep studies, importance of treating OSAHS, treatment options, why treatment is the best option for the patients, impact of the condition on their daily lives and any long term effects of the condition, impact on driving and occupational risk, lifestyle changes and other sources of patient support . The committee from their experience highlighted the importance of providing advice on lifestyle changes such as losing excess weight, or cutting down on alcohol, that could help control symptoms/manage the condition.

The evidence showed that patients and partners suggested different format options and important components that would be valuable in developing a programme to help first-time CPAP users feel comfortable using CPAP. Small group sessions led by a respiratory therapist and/or a current CPAP user or an online video were identified by patients as optimal formats for providing the programme. Having an opportunity to ask questions and having a hands-on demonstration for setting up the machine and becoming familiar with different mask options were emphasised as important components of the programme that could help prepare new users. The evidence showed that patients preferred brochures and videotapes using fewer polysyllabic words and more personal communication. Some of the words were too difficult to understand and lacked the positive tone. The complexity of the words removed the emotion needed to deliver a clear message, and patients suggested more personal communication was needed to explain the treatments.The committee noted that some patients prefer more visual information such as brochures and short information films, but agreed that patients have varied preference and hence did not want to specify the format to provide information. The committee acknowledged that it is very important not only what type and format of information is presented to the patients but also the way it is presented.

The evidence showed that easy manageable routines and established habits of using CPAP, patients’ high motivation of using CPAP and patients’ understanding of risk of apnoeas and secondary diseases played an important role in partners support. Despite the anger over not being able to sleep properly and tiredness during the day, the spouses still described feelings of empathy as they felt sorry for their partner, because it was not his/her fault to suffer from OSAHS. The committee highlighted that the lack of evidence regarding issues such as difficulty for sleep apnoea patients in finding a partner, however the committee did not consider this to be a priority for research recommendation.

The committee agreed that information regarding OSAHS and driving should be provided to patients. The evidence showed that the main factors influencing treatment for drivers were lack of awareness about underlying causes of sleepiness, potential risks of sleepy driving and attitudes towards their personal health. The committee highlighted the importance of following guidance by DVLA on “Excessive Sleepiness” for driving in people with sleep apnoea.¹² (see Evidence report L for discussion of DVLA guidance for drivers with excessive sleepiness). The committee also discussed that untreated obstructive sleep apnoea could negatively impact work performance and productivity and this is particularly important in people involved in safety or vigilance critical duties, such operating machinery, driving, performing surgery or caring for vulnerable children or adults. The evidence review identified suggestions made by patients such as: support programmes for first time CPAP users, peer support and feedback from other patients. The committee discussed that patient support groups could be helpful for patients and their carers/family members, also in raising awareness of the condition.

The committee noted useful websites, such as the Sleep Apnoea Trust Association which has a range of patient information, including leaflets regarding CPAP (What is OSA, Snoring and OSA, Living with your CPAP, Dealing with CPAP claustrophobia and panic attacks, Sleep Apnoea and Hospital Admissions, plus on their website detailed DVLA Guidance for UK drivers with OSA); also the British Lung Foundation has generic information. CPAP manufacturers may provide educational information on their websites also relating to CPAP use and upkeep.

The evidence showed certain areas as very important in influencing partners’ support. Problems with mask such as mask leakage caused noise and necessary actions to refit the mask caused awakenings at night and impaired sleep for both patient and partner. Partners described that a limited initial treatment effect with unmitigated symptoms led to disappointment and reduced faith in the treatment. Psychological problems such as inhibited closeness, feelings of shame and practical problems were also mentioned as important factors negatively influencing partners’ support.

The committee agreed that appropriate information should be given to people about CPAP, including: how to clean and maintain the kit, the benefits of continuing with treatment and advice on encouraging adherence and how to get support for clinical problems including side effects such as dry mouth, stuffy nose, nose bleeds, skin irritation and impaired sleep quality. The committee also agreed that information should be provided regarding who to contact for replacement parts and machine issues (ideally two points of contact: one for replacement parts and another for clinical contact), different mask options, humidification and how to deal with problems with masks, the importance of persevering with using CPAP, training provisions at the time of CPAP, taking a break from using CPAP for a few (e.g. 3) nights, how to deal with problems associated with CPAP use and how often to expect follow up appointments.

The committee agreed that patients should be provided with information on travelling with CPAP or non-invasive ventilation: advice for travelling by flights/cruise ships/bus, and other considerations about co-existing conditions and hygiene when travelling abroad. For example: having a medical letter explaining that a patient is a CPAP/non-invasive ventilationuser is useful for airport security, keeping CPAP/non-invasive ventilation in hand luggage, liaising with the airline/cruise company/bus company if a plug socket is needed on a journey for CPAP/non-invasive ventilation use, taking appropriate plugs for other countries and extension cables. If a patient has oxygen also, this will need to be arranged as per oxygen guidelines.³⁴

The committee agreed that people using CPAP or non-invasive ventilation should be advised that these are aerosol generating procedures, and they should take appropriate precautions to reduce the risk of airborne infection such as COVID-19, using equipment in a well-ventilated room and using equipment away from other family members if possible. For more information, see the UK government guidance on COVID-19: infection prevention and control.³⁹

The committee noted that in current practice, information provision regarding CPAP is varied, with some centres offering one to one CPAP set up sessions, others offering group CPAP set up sessions, plus various support leaflets and access to online help.

The committee agreed that patients using a mandibular advancement splint (MAS) should be provided with information on why it is used and how it works, the benefits of continuing with treatment and advice on encouraging adherence, short term effects such as excessive salivation, changes in bite, mild discomfort and long term effects such as changes to dental occlusion. The committee agreed that information should also be provided on on adjusting the appliance to ensure maximum clinical therapeutic benefit. This should be optimised prior to a repeat overnight sleep study to assess progress. Information is also needed on how to clean the MAS, when to replace it, and the importance of regular follow-up visits with the dentist to ensure maintenance of good oral health.

OHS

No evidence was available for people with OHS. The committee agreed that the recommendations for OSAHS could apply to people with OHS as the principles are the same.

COPD-OSAHS overlap syndrome

No evidence was available for people with COPD-OSAHS overlap syndrome. The committee agreed that the recommendations for OSAHS could apply to people with with COPD-OSAHS overlap syndrome as the principles are the same.

1.6.1.4. Cost effectiveness and resource use

Cost effectiveness evidence was not sought as this was a qualitative review. The recommendations provide guidance regarding the content of information and support required for people with OSAHS, OHS, COPD-OSAHS overlap syndrome. This is in line with the general principles of provision of information already established in the existing NICE Patient experience guideline (CG138).

The recommendations were not considered likely to have a substantial resource impact over and above CG138.

If good patient information improves adherence to treatment then it could improve the efficiency of treatment.

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Appendices

Appendix A. Review protocols

Table 9. Review protocol: Information and support (PDF, 311K)

Appendix B. Literature search strategies

Sleep apnoea search strategy 5 – information and support

This literature search strategy was used for the following review;

What information and support do people and their families or carers need (for example, advice on lifestyle, driving and occupation, and their treatment)?

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.³⁵

For more information, please see the Methods Report published as part of the accompanying documents for this guideline.

B.1. Clinical search literature search strategy (PDF, 344K)

Appendix C. Clinical evidence selection

Figure 1. Flow chart of clinical study selection for the review of Information and support (PDF, 148K)

Appendix D. Clinical evidence tables

Download PDF (472K)

Appendix E. Forest plots

Not applicable.

Appendix F. Excluded studies

F.1. Excluded clinical studies (PDF, 216K)

Final

Qualitative evidence review

Developed by the National Guideline Centre, hosted by the Royal College of Physicians

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian.

Local commissioners and providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK574321PMID: 34613678

Objective	To find out through qualitative research what information and support people (and their carers and healthcare professionals) need
Population and setting	People with OSAHS/OHS/COPD-OSAHS overlap syndrome, their family/carers and healthcare professionals involved in their care Evidence will be stratified by: OSAHS vs OHS vs COPD-OSAHS overlap syndrome
Context	Information and support needs as described by studies
Review strategy	Synthesis of qualitative research. Results presented in narrative format. Quality of evidence assessed by a GRADE CerQual approach for each review finding

Study	Design	Population	Research aim	Comments
Brostrom 2010⁸ Sweden Qualitative study	In depth interviews. A qualitative content analysis was employed.	N=23 patients with OSAHS Age –mean (range) Men – 59 (33-73) Women -62(45-74)	To explore the experiences of adherence to CPAP treatment in patients with OSAS.	High quality of evidence
Brostrom 2017⁷ Sweden Qualitative study	Interviews	N=25 patients with OSAHS Took place after their initial visit at four CPAP clinics. Age (range) 20-39 – 3 patients 40-59 – 10 patients 60-69 – 6patients >70 – 6 patients	To describe facilitators and barriers from a patient perspective in communications between patients with OSAS and healthcare personnel during the first meeting when CPAP is initiated.	High quality of evidence
Dickerson 2006¹⁰ USA Qualitative study	Support group	N=17 people with sleep apnoea who use CPAP for treatment and attend a support group. Male/female – 12/5	Study examined help-seeking experiences in support groups of people with sleep apnoea who use CPAP devices	High quality of evidence
Dickerson 2013¹¹ USA Qualitative study	Telephone interview using “talk-out-loud technique” to determine usability. The interviews transcripts were analysed thematically.	N=10 participants with sleep apnoea and varying ages, race, education and CPAP usage, found the intervention contained useful information to understand their diagnosis, to problem-solve and monitor their progress. Age mean (SD) – 42.7 (13.4)	Development and usability testing of a self-management intervention to promote CPAP adherence.	High quality of evidence
Elfstrom 2012¹³ Sweden Qualitative study	A qualitative descriptive design using critical incident technique was used. A total of 542 decisive situations affecting partners’ support and 222 situations describing managing were collected by means of interviews with 25 strategically selected partners of patients with CPAP treated OSAS.	N=25 strategically selected partners of patients with CPAP treated OSAHS. Age (range) <40 – 70	The aim of this study was to explore and describe decisive situations affecting partners’ support to patients with OSAS and how the partners manage these situations during the initial phase of CPAP treatment.	High quality of evidence
Firestone 2010¹⁵ New Zealand Qualitative study	Qualitative research based on 3 focus groups	N=27 taxi drivers who had a high pre-test risk for obstructive sleep apnoea. Assignment to focus groups was based on self-identification as being Maori and Pacific peoples, New Zealand European, or non-Maori and non-Pacific. Age (range) New Zealand European – 36-66 Maori/pacific – 46-64 Other ethnicity – 40-64	To examine the attitudes of taxi drivers towards symptoms of OSAS, and to determine whether these attitudes could influence their health and safety as a professional driver.	High quality of evidence
Fung 2017¹⁷ USA Qualitative study	Four focus groups	N=35 older sleep apnoea patients Age – all patients 65 years old or older	To explore older adults’ communication with their providers, preferences for communication and views on communication attributes and decision aid characteristics, by conducting four focus groups.	High quality of evidence
Henry 2013²⁰ USA Qualitative study	In-depth, semi-structured interviews with both patients and partners (n = 24).	Patients clinically diagnosed with sleep apnoea were recruited by a physician. N=24 (12 patients and 12 spouses) participated in semi-structured interviews. Age (range) – 27 – 72	To illuminate the significance of gender and partner-reporting in shaping the lay diagnosis, management, and treatment of obstructive sleep apnoea	High quality of evidence
Igelstrom 2012²³ Sweden Qualitative study	Interviews and qualitative analysis	N= 15 People with sleep apnoea and obesity. Seven women and 8 men were interviewed Age – Median (QD) - 62(8.5)	The purpose of this study was to explore aspects of engagement in physical activity in persons with obstructive sleep apnoea who were overweight.	High quality of evidence
Ingadottir 2006²⁴ Iceland Qualitative study	Data generated through two 1-hour semi-structured interviews with each pair of participants, were analysed into themes. Results are presented by the following narratives: (i) mixed blessing: life-saving treatment - meaningless exertion; (ii) compassion and understanding central amid use of complex machines; (iii) listening to the body; (iv) wanting to be seen as healthy; (v) dominance of technological thinking; and (vi) sustained work in maintaining the treatment.	N=6 patients that have been dependent on sleep technology in the form of non-invasive ventilation with or without long term oxygen therapy for at least 6 months due to sleep-related breathing disorders aged 45-70, five spouses and one daughter	This study describes patients’ and families’ experience of long-term home treatment with non-invasive ventilation during sleep with or without additional oxygen therapy.	High quality of evidence
Luyster 2016³² USA Qualitative study	Qualitative research study. Qualitative content analysis identified five themes: knowledge of sleep apnoea, effects of sleep apnoea, effects of CPAP, barriers and facilitators of CPAP, and ideas for a new user support program. Patients and partners emphasized the importance of partner involvement in the early CPAP treatment period.	N= 27 participants were collected via four sleep apnoea patient and four partner focus groups. Al patients over 21 years of age	This qualitative research study explored patients’ and partners’ experiences of CPAP and facilitators and barriers to CPAP use, and elicited suggestions for a first-time CPAP user program.	High quality of evidence
Murphy 2000³³ USA Qualitative study	Patients watched either an instructional videotape about sleep apnoea or read a newly designed brochure, then responded to a structured questionnaire containing 11 knowledge-based questions and 1 open-ended question (requesting suggestions for improvement of the brochure or videotape).	N=192 sleep apnoea patients Age (mean) by intervention: Brochure – 44 years Video – 46 years	To compare the effectiveness of video and written material for improving knowledge among sleep disorders clinic patients with limited literacy skills	High quality of evidence
Shaw 2012⁴⁴ USA Qualitative study	Five focus groups	N= 39 black men and women with OSA, aged ≥18 years	To ascertain barriers preventing or delaying OSA evaluation and treatment in black community.	High quality of evidence
Sporndly-Nees 2014⁴⁶ Sweden Qualitative study	Semi-structured interviews were conducted and data were transcribed and analysed using qualitative content analysis with researcher triangulation for trustworthiness.	N= 15 patients with OSAHS (AHI>15) and obesity (Mean body mass index 38.2). Age – mean (SD – 56.8 (10.2)	The aim of this study was to identify personal conceptions of prerequisites for eating behaviour change.	High quality of evidence
Stalkrantz 2012⁴⁷ Sweden Qualitative study	The interviews were analysed according to the Grounded Theory method as described by Strauss and Corbin.	N= 12 spouses of sleep apnoea patients Age range – 25 - 67	The aim of this study was to generate a theoretical model describing concerns for spouses of patients with untreated obstructive sleep apnoea syndrome (OSAS) and how they manage these concerns in their everyday life.	High quality of evidence
Tyrrell 2006⁴⁸ France Qualitative study	Semi-structured interviews, constructed from the Health Belief Model (HBM)	N=9 patients with OSA were interviewed (age 32-70 years; 8 males).	Study explored patients understanding and experiences of their OSA and of the CPAP therapy and their reasons for stopping treatment.	High quality of evidence
Veale, 2002⁴⁹ France Qualitative study	Semi-directive interviews with patients attending a pulmonary rehabilitation and convalescent unit around the themes of sleep, health and treatment. An analysis of content and of discourse was carried out by textual analysis and by propositional analysis of discourse (PAD) with the aid of dedicated computer programs (Tropes, Sphinx Lexica).	N=30 patients with OSA attending a pulmonary rehabilitation and convalescent unit around the themes of sleep, health and treatment. Age range (median) – 39 -74 (55)	To seek an in-depth analysis of how patients live with sleep apnoea by allowing them an open discourse and analysing the text of their statements.	High quality of evidence
Vlachantoni 2015⁵¹ Greece Qualitative study	Self-administered questionnaire	N= 840 taxi drivers with OSAHS. Only ten 10 participated in the qualitative study. Age- mean(SD) – 44.5 (10.35)	To evaluate the prevalence of morning and day sleepiness and OSAS among taxi drivers of the Athens airport and to examine the factors that may influence a taxi driver’s decision to participate in screening.	High quality of evidence
Waldman 2020⁵² USA Qualitative study	Semi structured focus groups	N=42 participants currently experiencing excessive daytime sleepiness with OSA Age – mean (range) – 51.4 (31-75)	This qualitative research examined timing and reasons patients sought medical care for their EDS and OSA symptoms, and the impact of EDS on HRQOL.	High quality of evidence
Ward 2017⁵⁴ New Zealand Qualitative study	Semi-structured interviews during four months of 2011 and six months of 2014.	N= 16 participants with sleep apnoea participated, recruited through a main-centre respiratory service in New Zealand Age band: 25-35 – 2 patients 36-45 – 4patients 46 – 55 – 2 patients 56 – 65 – 6 patients 66+ 2 patients	To explore experiences of living with CPAP from participants’ perspectives.	High quality of evidence
Ward 2018⁵³ New Zealand Qualitative study	Semi-structured interviews	N=16 adult patients with sleep apnoea Age: (25-35) – 2 participants; (36 – 45) - 4 participants; (46 – 55) – 2 participants; (56 – 65) - 6 participants; (65+) 2 participants. Ethnicity: New Zealand/European - 9; Maori -1; Samoan – 1; Indian – 3; NZ European/other – 2	To explore experiences of living with CPAP therapy from participants’ perspective using constructionist grounded theory.	High quality of evidence
Willman 2012⁵⁵ Sweden Qualitative study	A qualitative content analysis was employed. Fifteen participants were consecutively selected. Data were collected by semi-structured interviews.	N= 15 participants with sleep apnoea and obesity were consecutively selected. Age- mean(SD) – 56.8(10)	The purpose of this study was to describe patients’ experiences of CPAP treatment in obese people with moderate to severe OSAS.	High quality of evidence
Ye 2017⁵⁶ USA Qualitative study	20 joint qualitative interviews	N= 20 patients with obstructive sleep apnoea Age patient – mean (SD) – 49.6 (9.6) Age partner – mean (SD)-50.1 (10.1)	This qualitative analysis used a dyadic approach to identify facilitators and barriers to successful treatment of one of the most common sleep disorders, obstructive sleep apnoea, with CPAP.	High quality of evidence
Zarhin 2015⁵⁷ Israel Qualitative study	In depth interviews	N= 65 Israelis who received a laboratory diagnosis of OSA Age – range – 30-66 years Men age (mean) – 53.5 Women age (mean) – 57.7 Men/women – 34/31	To examine whether and how the ways in which OSA emerged affect patients	High quality of evidence
Zarhin 2017⁵⁸ Country: Israel Qualitative study	In-depth interviews	N= 61 Jewish-Israeli patients with OSA who received a recommendation to use a CPAP device. The sample includes both patients who started using CPAP devices as well as patients who rejected this course of treatment. Age – mean (SD) Non-users – 54.3(9) Adherent users – 56.8(5.6) Partially adherent – 60.5(4.4) Non adherent – 55.5(4.5) Total – 55.3(8.1) Male/female – 33/28	To understand patients experiences of CPAP use vs non use	High quality of evidence

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
5 studies (303 patients) Dickerson 2013¹¹ Murphy 2000³³ Luyster 2016³² Shaw 2012⁴⁴ Fung 2017¹⁷	Semi structured interviews	Patients mentioned these types and formats of information that would be useful for making decisions: Brochures and videotapes that explain treatment and outcomes information using simple terms. Treatment options - Patients suggested more information on treatment options Feedback from other patients - Several patients wanted feedback from patients who had the same treatments. Clarity of information- The suggestion was made to include clear and complete steps of treatments, choosing words that are simple and relative to the patient’s concerns Ethnic representation- More ethnic representation was requested from number of patients; patients wanted to be able to identify with the patient used as an example. New user support programme - Patients and partners suggested format options and important components that would be valuable in developing a programme to help first-time CPAP users feel comfortable using CPAP. Small group sessions led by a respiratory therapist and/or a current CPAP user or an online video were identified by patients as optimal formats for providing the program. Peer support - A number of participants suggested practical ways to disseminate information about sleep apnoea and its treatment within the community. “Organize a group. If you could go in and find out who’s not sleeping and focus on them”. Personalised information- Patients felt that it would be helpful to have treatment information tailored to their needs, including information on the negative impact of treatment on comfort and convenience and disclosure about common barriers to adherence.	Limitations	No concerns about methodological limitations^a	High
			Coherence	No concerns about coherence^a
			Relevance	No concerns about relevance^a
			Adequacy	No concerns about adequacy^a

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
2 studies (60 patients) Brostrom 2017⁷ Fung 2017¹⁷	Interviews and focus groups	People mentioned confidence building and confidence hindering information which affects communication between them and healthcare professionals. Confidence building factors: structure building, information transfer, desire for more information, and commitment. Confidence hindering factors: Organizational insufficiency, stress behaviour/ interaction deficit.	Limitations	No concerns about methodological limitations^a	High
			Coherence	No concerns about coherence^a
			Relevance	No concerns about relevance^a
			Adequacy	No concerns about adequacy^a

Study design and sample size		Finding	Quality assessment
Number of studies contributing to the finding	Design	Finding	Criteria	Rating	Overall assessment of confidence
8 studies (168 people) Brostrom 2010⁸ Dickerson 2006¹⁰ Dickerson 2013¹¹ Ward 2017⁵⁴ Willman 2012⁵⁵ Ye 2017⁵⁶ Zarhin 2017⁵⁸ Ingadottir 2006²⁴	Unstructured interviews/support groups	Facilitators of CPAP use: The CPAP patients’ partner aiding diagnosis and treatment, Becoming used to CPAP, Meeting adherent CPAP users, Finding other treatment options unsatisfactory, Getting a new life. Barriers of CPAP use: Anxiety related to CPAP treatment particularly in the beginning of therapy, bothersome equipment causing disruptions in sleep and bedtime routine, Interruptions to intimacy, Concern about image change while wearing CPAP	Limitations	No concerns about methodological limitations^a	High
			Coherence	No concerns about coherence^a
			Relevance	No concerns about relevance^a
			Adequacy	No concerns about adequacy^a

Information and support

Authors

1. Information and support

1.1. Review question: What information and support do people and their families or carers need (for example, advice on lifestyle, driving and occupation, and their treatment)?

1.2. Introduction

1.3. Characteristics table

1.4. Qualitative evidence

1.4.1. Included studies

OSAHS

OHS

COPD-OSAHS overlap syndrome

1.4.2. Excluded studies

1.4.3. Summary of clinical studies included in the evidence review

1.4.4. Narrative summary of review findings

1.4.4.1. Content of information

Review finding 1: Type and format of the information (5 studies)

1.4.4.2. Communication between patients and healthcare professionals (2 studies)

Review finding 1: Confidence building

Review finding 2: Confidence hindering

1.4.4.3. Experiences of CPAP use (8 studies)

Review finding 1: Facilitators of CPAP use

Review finding 2: Barriers of CPAP use

1.4.4.4. Factors influencing behaviour change (2 studies)

Review finding 1: Physical activity

Review finding 2: Facilitators and barriers for eating behaviour changes

1.4.4.5. Factors influencing seeking for treatment (5 studies)

1.4.4.6. Factors influencing partners’ support (4 studies)

1.4.5. Qualitative evidence summary

1.5. Economic evidence

1.6. The committee’s discussion of the evidence

1.6.1. Interpreting the evidence

1.6.1.1. The outcomes that matter most

1.6.1.2. The quality of the evidence

1.6.1.3. Findings identified in the evidence synthesis

OSAHS

OHS

COPD-OSAHS overlap syndrome

1.6.1.4. Cost effectiveness and resource use

References

Appendices

Appendix A. Review protocols

Appendix B. Literature search strategies

Appendix C. Clinical evidence selection

Appendix D. Clinical evidence tables

Appendix E. Forest plots

Appendix F. Excluded studies

Table 1PICO characteristics of review question

Table 2Summary of studies included in the evidence review

Table 3Summary of evidence – Type and format of the information

Table 4Summary of evidence – communication between patients and healthcare professionals

Table 5Summary of evidence – experiences of CPAP use (facilitators and barriers)

Table 6Summary of evidence – Factors influencing behaviour change

Table 7Summary of evidence – Factors influencing seeking for treatment

Table 8Summary of evidence – Factors influencing partners’ support