Three studies were rated serious limitations due to a lack of reflection on the role of the researcher and data richness; plus limited context and reasoning for the choice of methods for one study, lack of information on context and data collection for another, and lack of rigour of research methods, study aims, and relevance of findings for the third study. Coherence was rated minor concerns overall. Agreement between papers was good in that they all reported a range of people s attitudes and concerns. Variability in people s attitudes is expected, hence the concerns were rated as minor overall. Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from seven studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The subfinding was general and supported by a number of studies. The finding was descriptive and supported by the richness of data. The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations. 4. Improving communication/information flow Review subfinding 4a: Education and joint working GPs expressed a need for education around the identification and diagnosis of heart failure patients; and that with such an improvement in their own understanding their ability to communicate this information to the patient would improve. They felt that changes needed to be made within the health profession first before information on the identification and diagnosis of heart failure can be more clearly communicated to patients (Barnes 2006). Further, in one study cardiology and palliative care staff reported a lack of clarity regarding what had previously been discussed with and disclosed to patients. They recommended mutual education and Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 joint working between the specialties to improve communication to the patient and family (Harding 2008). This subfinding was based on two studies.26, 141 Methodological limitations were rated serious overall. One study had moderate limitations due to limitations in context, role of researcher and data analysis. Another study had very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions. Coherence was rated no or very minor concerns overall. Agreement between papers was good. Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from two studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. Although the subfinding was explicitly supported by only two studies, it was provided in much detail. The overall assessment of confidence was moderate, having been downgraded by one increment due to serious methodological limitations. Review subfinding 4b: Ongoing relationship Healthcare professionals reported that because appointments with consultants are too short to relay all the information a patient would need regarding diagnosis and prognosis, patient education was often delegated to specialist nurses in the outpatient or community setting. Healthcare professionals suggested that education was best delivered within the ongoing relationship between the specialist nurse and patient, in particular during home visits where patients are more relaxed and able to assimilate information. In support of this some patients reported that they find it easier to communicate with nurses than to cardiologists and it was suggested that the specialist nurse environment was a good place to discuss patients condition and give information. This subfinding was based on two studies.26, 133, 313 Methodological limitations were rated moderate overall. One study had moderate limitations due to limitations in context, the role of researcher and data analysis. Another study was rated as having moderate limitations due to a lack of context, reflections on the role of the researcher, and data richness in some sections relevant to this review. Coherence was rated no or very minor concerns. Agreement between papers was very good. Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from two studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. Although the subfinding was explicitly supported by only two studies, it was illustrated in much detail. The overall assessment of confidence was high, as the moderate limitations in methodology were offset by the richness of data provided by these two studies. Review subfinding 4c: Tailoring of information Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Healthcare professionals suggested that information needed to be tailored to the need of the individual as some people are more able and/or willing to hear information than others. Also, people with heart failure tend to be older, more likely to accept what a doctor says and not proactive in asking questions (e.g. some patients may be unwilling to raise questions about prognosis). They may also be more likely to have short-term memory loss, are too ill to benefit from education or are in denial about their condition etc. Consequently, specialist nurses spoke of the necessity to find a balance between the education they offered patients and their capacity to receive it. As a consequence they tried to identify key issues and personalise the information accordingly. This would involve repeating these messages over time. Methodological limitations were rated moderate overall. Four studies were rated moderate limitations: each due to a number of limitations that included some of the following; limitations in context, role of researcher, data analysis, research method rigour, and/or data richness in some sections relevant to this review. Two studies were rated serious limitations due to lack of reflection on researcher role in the study, limited context and data richness, plus lack of reasoning for choice of methods in one study and limitations in data collection for the other. One study was rated very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions. Coherence was rated no or very minor concerns. Agreement between papers was very good. Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from seven studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The subfinding was explicitly supported by seven studies, and it was illustrated in much detail. The overall assessment of confidence was high, as the moderate limitations in methodology were offset by the richness of data provided by these seven studies. Review subfinding 4d: Improving access to information Patients who wished for more information sought a better understanding of the disease process, the practical limitations, how to get help and how to cope with living with heart failure Horne 2004). Some people with heart failure wished to be told openly and sensitively about their (poor) prognosis by clinicians, with some wanting to know more accurately when they would die. As some patients reported not having received written information of their heart failure diagnosis, ensuring that information pamphlets are passed on during consultations is vital so that patients can go through them at home in their own time. Patients expressed the desire for information regarding both diagnosis and prognosis to be communicated using lay terms. Family and informal carers wished to be involved in all communications in order to support the patient in their role of family information providers. Carers also asked for more information about what to do in an emergency, how to recognise when signs and symptoms needed urgent attention and how to perform cardiopulmonary resuscitation. The provision of information on access to a telephone advice line or support group was also suggested. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Methodological limitations were rated moderate overall. Four studies were rated as moderate limitations: each due to a number of limitations that included some of the following; limitations in context, role of researcher, data analysis, research methods rigour, and/or data richness in some sections relevant to this review. One study was rated as serious limitations due to study aims, role of the researcher, rigour of research methods, data richness and relevance of findings. One study was rated very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions. Coherence was rated minor concerns overall. Although the suggestions for how to improve access to information varied, overall the agreement between papers was good. Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from six studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The findings were supported by a few studies in much detail. The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations. Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 9.4.3.4 Qualitative evidence summary Table 140: Summary of evidence Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence Diagnosis of heart failure 1a. Communication is challenging Individual interviews with pt + carers and focus groups with HCPs Ethnographic study (in-depth interviews, observation, impromptu interviews, field notes, patient and carer diaries, patient medical records) involving pt and HCPs Clinicians find the diagnosis itself and the ensuing communication around diagnosis challenging. Limitations Moderate concerns about methodological limitations MODERATE Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy Minor concerns about adequacy Diagnosis of heart failure 1b. Timing and setting Individual interviews with pt + carers and focus groups with HCPs Ethnographic study involving pt and HCPs Open-ended narrative interviews with pt Choosing the timing and setting of communicating the diagnosis is important. Limitations Moderate concerns about methodological limitations MODERATE Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence Adequacy No concerns about adequacy Diagnosis of heart failure 1c. Gradual process Individual interviews with pt + carers and focus groups with HCPs Secondary analysis of interview transcripts of pt. Ethnographic study involving pt and HCPs The diagnosis itself is seen as a gradual process which results in information and guidance around diagnosis being relayed to patients in a gradual manner. Limitations Moderate concerns about methodological limitations MODERATE Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No concerns about adequacy Diagnosis of heart failure Semi-structured interviews with pt + carers Individual interviews with pt + carers and focus groups with HCPs Secondary analysis of interview transcripts of pt. In-depth interviews with pt and following bereavement interviews with informal carers As the term heart failure is seen by healthcare professionals as anxiety-invoking, many make use of euphemisms or even more complex terminology instead which is often confusing for patients. Limitations Moderate concerns about methodological limitations MODERATE Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence and FG with professional carers Ethnographic study involving pt and HCPs Semi-structured interviews with pt and their carers adequacy Understanding heart failure 2a. Understanding of diagnosis Semi-structured interviews with pt + carers Individual interviews with pt + carers and focus groups with HCPs Individual interviews with pt + carer and interviews or FG with HCPs Open-ended narrative interviews with pt Secondary analysis of interview transcripts of pt In-depth interviews with pt and following bereavement interviews with informal carers and FG with professional carers Semi-structured interviews with pt, their carers and HCPs Ethnographic study involving pt and HCPs Semi-structured interviews with Although there is variability in patients understanding of their diagnosis it is generally poor. Limitations Serious concerns about methodological limitations LOW Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence pt and their carers Understanding heart failure 2b. Knowledge and management Individual interviews with pt + carers and focus groups with HCPs Individual interviews with pt + carer Open-ended narrative interviews with pt Open semi-structured interviews with pt Semi-structured interviews with pt and their carers Patients desire for more knowledge about their condition and its management is highly individual. Limitations Serious concerns about methodological limitations LOW Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Discussion of prognosis 3a. Difficult conversations Individual interviews with pt + carers and focus groups with HCPs Individual interviews with pt + carer and interviews or FG with HCPs Secondary analysis of interview transcripts of pt In-depth interviews with pt and following bereavement interviews with informal carers Staff reported difficulties to discuss prognosis and future care options due to the unpredictable disease trajectory, uncertainty whether patients wanted to know and difficulties handling emotional involvement of patients and their families. Limitations Serious concerns about methodological limitations MODERATE Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence and FG with professional carers Semi-structured interviews with pt, their carers and HCPs Ethnographic study involving pt and HCPs adequacy Discussion of prognosis 3b. Understanding of prognosis Semi-structured interviews with pt + carers Individual interviews with pt + carers and focus groups with HCPs Individual interviews with pt + carer and interviews or FG with HCPs Secondary analysis of interview transcripts of pt In-depth interviews with pt and following bereavement interviews with informal carers and FG with professional carers Patients described that prognosis was rarely discussed and showed that their understanding of their prognosis was generally poor. Limitations Moderate concerns about methodological limitations MODERATE Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Discussion of prognosis 3c. Patients concerns Semi-structured interviews with pt + carers Individual interviews with pt + carers and focus groups with Whilst patients desire for more knowledge about their prognosis was highly individual many were worried by the uncertainty of what the future holds. Limitations Moderate concerns about methodological limitations MODERATE Coherence Minor concerns about Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence HCPs Individual interviews with pt + carer and interviews or FG with HCPs Open-ended narrative interviews with pt Open semi-structured interviews with pt Ethnographic study involving pt and HCPs Semi-structured interviews and one FG with carers of pt and the person they cared for coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Improving communication/ information flow 4a. Education and joint working Individual interviews with pt + carers and focus groups with HCPs Semi-structured interviews with pt, their carers and HCPs Staff identified training needs regarding diagnosing and prognosticating heart failure and mutual education for staff of different specialities that would improve the communication with the patient and family. Limitations Serious concerns about methodological limitations MODERATE Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence Improving communication/ information flow 4b. Ongoing relationship Individual interviews with pt + carers and focus groups with HCPs Ethnographic study involving pt and HCPs Staff suggested for information and education to be delivered within an ongoing relationship with the patient in an appropriate setting. Limitations Moderate concerns about methodological limitations HIGH Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Improving communication/ information flow 4c. Tailoring of information Individual interviews with pt + carers and focus groups with HCPs Individual interviews with pt + carer and interviews or FG with HCPs Open-ended narrative interviews with pt In-depth interviews with pt and following bereavement interviews with informal carers The variability in patients ability and willingness to receive information regarding their condition requires staff to tailor the information to the needs of the individual. Limitations Moderate concerns about methodological limitations HIGH Coherence No or very minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Finding Quality assessment Number of studies contributing to the finding Design Criteria Rating Overall assessment of confidence and FG with professional carers Semi-structured interviews with pt, their carers and HCPs Ethnographic study involving pt and HCPs Semi-structured interviews with pt and their carers adequacy Improving communication/ information flow 4d. Improving access to information Semi-structured interviews with pt + carers Individual interviews with pt + carers and focus groups with HCPs Open semi-structured interviews with pt In-depth interviews with pt and following bereavement interviews with informal carers and FG with professional carers Semi-structured interviews with pt, their carers and HCPs Semi-structured interviews and one FG with carers of pt and the person they cared for Patients desire more detail, written information and greater access to support. Limitations Moderate concerns about methodological limitations MODERATE Coherence Minor concerns about coherence Relevance No or very minor concerns about relevance Adequacy No or very minor concerns about adequacy Abbreviations: pt = people with chronic heart failure, HCP = healthcare professional, FG = focus group Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.4.4 Economic evidence Published literature No relevant economic evaluations were identified. See also the economic article selection flow chart in Appendix D. Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.4.5 Evidence statements Qualitative See the narrative summaries of review findings in section 9.4.3.3.1. Economic No relevant economic evaluations were identified. 9.4.6 Recommendations and link to evidence Recommendations When giving information to people with heart failure, follow the recommendations in the NICE guideline on patient experience in adult NHS Discuss the person's prognosis in a sensitive, open and honest manner. Be frank about the uncertainty in predicting the course of their heart failure. Revisit this discussion as the person's condition evolves. [2018] Provide information whenever needed throughout the person s care. Consider training in advanced communication skills for all healthcare professionals working with people who have heart failure. [2018] First consultations for people newly diagnosed with heart failure The specialist heart failure MDT should offer people newly diagnosed with heart failure an extended first consultation, followed by a second consultation, to take place within 2 weeks if possible. At each consultation: discuss the person s diagnosis and prognosis explain heart failure terminology discuss treatments address the risk of sudden death, including any misconceptions about that risk encourage the person and their family or carers to ask any questions they have. [2018] Findings identified in the evidence synthesis The evidence from the review was grouped into four findings, each of which contained multiple sub-findings. These key findings are summarised below. Diagnosis of heart failure: the evidence suggested that clinicians find the diagnosis itself and the ensuing communication around diagnosis challenging. The timing of and setting in which the diagnosis is communicated is important, taking care to avoid busy environments that do not foster the sensitive relay of information. The diagnosis itself was seen as a gradual process allowing the information and guidance around diagnosis to be passed on to patients in a manageable way. The evidence suggested that the term heart failure was regarded by healthcare professionals as anxiety- invoking, with many health care providers making use of euphemisms or even more complex terminology instead. These alternative explanations Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 often led to a poorer understanding, confusion for people with heart failure and a lack of interest in their diagnosis as a consequence. Understanding heart failure: it was found that although there is variability in patients understanding of their diagnosis; it is generally poor and often misunderstood by people. Many did not connect symptoms they had to their heart failure; and showed poor knowledge of treatments, their importance, side effects and limitations. The lack of understanding was often compounded by confusion and short-term memory loss that is associated with heart failure. Patients desire for more knowledge about their condition and its management is highly individual. Some patients did not want to know more about their diagnosis as it would cause them to worry. Yet, others described that having received too little or conflicting information about their diagnosis caused them anxiety. Some people were proactive in seeking information themselves and knew how to manage their condition. Discussion of prognosis: staff reported difficulties in discussing prognosis and future care options due to the unpredictable disease trajectory, uncertainty about whether patients wanted to know their prognosis, and the challenge of handling the emotional response of patients and their families. Some healthcare professionals also found it challenging to balance the need to be honest with the patient about their condition (which could raise anxiety) with building trust and the desire to maintain hope and a positive outlook for patients faced with a life-limiting illness. Patients identified that prognosis was rarely discussed and the evidence showed that their understanding of their prognosis was generally poor. Patients desire for more knowledge about their prognosis was highly individual, whilst some preferred not to know more, many were worried by the uncertainty of what the future held. Improving communication/information flow: staff identified training and education needs regarding diagnosing and prognosticating heart failure to improve communication with the patient and family. Staff commented that single consultant appointments are too short to relay all the information a patient would need regarding diagnosis and prognosis. It was suggested that information and education be delivered within the context of a relationship of trust and continuity between the patient and the health care professional, and in an appropriate setting. Healthcare professionals identified the variability in patients ability and willingness to receive information about their condition requires staff to tailor the information to the needs of the individual. Many patients desire more detail, preferably in lay terms, written information and greater access to support. Family and informal carers wished to be involved in all communications. Quality of the evidence The confidence ratings for the different sub-findings in the review were varied, ranging from high to low. The members weighed the confidence in the individual findings with their own experiences, and agreed that they were broadly consistent. Diagnosis of heart failure: All 4 sub-findings within this finding, namely communication is challenging, timing and setting, gradual process and terminology, were rated as moderate confidence. This was mainly due to methodology concerns, as well as minor coherence limitations in a 2 findings Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 and minor adequacy limitations in 1 sub-finding. Understanding heart failure: Both sub-findings within this finding, understanding of diagnosis and knowledge and management, were rated as low confidence having, in both instances, been downgraded by 2 increments due to concerns over methodology and coherence. Discussion of prognosis: All 3 sub-findings within this finding, namely difficult conversations, understanding of prognosis, and patients concerns, were rated as moderate confidence. This was mainly due to limitations in methodology, as well as minor coherence limitations for the last 2 sub- findings. Improving communication/information flow: Two sub-findings (education and joint working and improving access to information) were rated as moderate confidence having been downgraded mainly due to serious methodological limitations. The other 2 sub-findings within this finding, ongoing relationship and tailoring of information, were rated as high confidence as the moderate methodological concerns were offset by the data richness provided by the studies. Trade-off between benefits and harms The committee agreed that the findings and sub-findings identified in the review resonated with their own experiences as healthcare professionals or patients within heart failure services in the NHS. The committee acknowledged that some of the sub-findings identified in the review reflect general issues around communication and information needs in health care and are addressed by recommendations in the patient experience guideline CG138. The committee identified several key recommendations in that guideline which, if implemented in heart failure services, would go some way towards addressing the issues identified in the review. Highly pertinent recommendations from CG138 include allow adequate time so that discussions do not feel rushed (1.3.4.), clarify with the patient at the first point of contact whether and how they would like their partner, family members and/or carers to be involved in key decisions (1.3.10), avoid the use of jargon and define unfamiliar words (1.5.6), provide both oral and written information (1.5.12), and to give the patient the opportunity to discuss their diagnosis, prognosis and treatment options (1.5.21). The committee agreed that there was no need to replicate these recommendations in this guideline and instead decided to cross refer to the patient experience guideline. The committee decided to focus on the issues raised that are specific to the communication of the diagnosis and prognosis of heart failure. In line with the review findings, the committee was unanimous that a single consultation was too short to explain the diagnosis to the patient and the amount of information that would have to be relayed could be overwhelming. This echoed the general recommendation in the patient experience guideline to allow adequate time so that discussions do not feel rushed (section 1.3). Building on this, the committee recommended an extended first consultation followed by a prompt (usually within 2 weeks) follow-up appointment with any member of the specialist multidisciplinary team. The committee considered a 2 week gap between the first and second appointment as reasonable and reflected usual practice whilst acknowledging this may not always be possible or appropriate in all situations. To foster continuity of care and building of the future ongoing Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 relationship, the committee recommended that the patient would be told who they would see at their next consultation (a member of the specialist heart failure multidisciplinary team) and explained what they can expect to happen. The committee also discussed the importance of having family members/carers involved in communication from an early stage as receiving bad news in the form of the diagnosis of heart failure can be overwhelming for the patient. Carers may also be better able to take on board information provided regarding ongoing care and management than the patient who has just been given a diagnosis. Additionally, family members and carers often struggle with how best to help when the patient has conveyed information poorly or partially to them. For this reason, the inclusion of a family member or carer in one or more consultations will improve the understanding of the condition and the potential support provided to the patient. The committee acknowledged that this was covered by the patient experience guideline (particularly section 1.3) and agreed to include a cross reference to that guidance in their recommendations. It was agreed that the following points should be communicated to the patient in the first 2 appointments with the heart failure MDT: Diagnosis. Explanation of the terminology. Symptoms of heart failure and the meaning of proscriptions (for example, dietary, physical activities). Available treatments, their effects and side effects. Prognosis. Mention exacerbations and risk of sudden death. The cardiologists on the committee described that they often have to dispel misconceived ideas at the first consultation with a newly diagnosed patient. This may be the result of misunderstandings occurring when patients are referred for specialist investigation of heart failure symptoms. The committee was also aware of a lack of public awareness of heart failure as a medical condition that contributed to this. The committee did not support the use of euphemisms and suggested that health care professionals use the term heart failure in an open and honest manner with the patient, explaining its meaning in detail, dispelling any myths or other fears induced by the language, and providing a balanced picture of the condition. The committee discussed that imagery used to describe heart failure by some healthcare professionals can be received poorly by patients. To avoid confusion for patients it was suggested that healthcare professionals could practice some phrases to explain the condition before seeing the patient. The committee acknowledged that discussion of prognosis should be a gradual process and may not necessarily be discussed in the first consultation as it is highly difficult to predict, particularly in the early stages of the condition. The prognosis needs to be discussed in a sensitive, open and honest manner, ensuring that the unpredictability of the prognosis and any uncertainty regarding life expectancy is conveyed. The positive effects of treatments available should also be discussed. The group acknowledged the difficulty patients may have coming to terms with information around their Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 own prognosis which highlights the importance of an immediate follow-up consultation and the engagement of family/carers (where the patient consents to their presence). This consultation provides reinforcement of the key implications of the diagnosis and prognosis and, especially where a family member or carer is present, clarification of any misperceptions. To facilitate a quick rapport with the patient and to tailor information to the patient s needs (in line with the recommendations of the patient experience guideline), the consultant committee members suggested including any preferences the patient had, regarding the level and type of information they want to be given, into the referral form from primary care. Another suggestion was for patients to complete a simple questionnaire before the first appointment identifying key areas they would like to discuss during the consultation. The committee acknowledged that the communication of these challenging issues requires specific skills that not all healthcare professionals have, and supported the provision of training in advanced communication skills to all heart failure staff. Specific information on heart failure issues could be incorporated into broader communication training for chronic or life-limiting conditions. The importance of consistency was discussed. It was agreed that the patient should receive consistent information from all MDT members. The committee recognised that this was closely linked to the separate evidence review on Transition between heart failure care settings and the recommendations developed out of that review. The need for printed leaflets on heart failure to be available within the NHS was unanimously agreed by the committee as patients value the provision of information that they can take away with them to read and absorb in their own time. The committee also acknowledged that patients need to be directed to reliable sources of information outside the NHS for example, British Heart Foundation, Pumping Marvellous, Cardiomyopathy UK. Trade-off between net effects and costs No previously published economic evaluations were identified for this question. The committee considered that overall the recommendations made above in conjunction with the patient experience guideline would improve patient satisfaction and help reduce anxiety about their condition and as a result lead to an improvement in quality of life. The majority of the recommendations made above will not incur any cost as they simply specify what information should be given to patients and the manner in which it should be delivered. However, the committee acknowledged that a couple of the recommendations could have cost implications. Firstly, an extended first consultation will incur an additional cost due to the required extra time from the clinician to fully explain the person s diagnosis and prognosis. However, the committee considered that a standard consultation appointment is unlikely to be long enough to allow sufficient time to explain the diagnosis and prognosis as recommended in the patient experience guideline and thought this was necessary for good clinical practice. Furthermore, this type of recommendation is endorsed by the patient experience guideline which specifies that when discussing patient views and preferences that adequate time should be allowed so that Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 discussion does not seemed rushed. In many centres, extended consultations are likely to already be occurring. The committee also acknowledged that further communication training would incur a cost. The committee were aware of training for other chronic conditions that could also be extended to heart failure specialists. Furthermore, such training is likely be undertaken in a group setting to minimise cost, or alternatively could be provided through e-learning, or at medical school in future. The committee acknowledged that the benefits of improved communication training would be advantageous across the entire treatment pathway for chronic heart failure patients as well as other conditions outside of heart failure, and therefore overall, the long-term cost effectiveness of training in effective communication is likely to be negligible. Other considerations The committee acknowledged The Second Conversation Project which was currently piloting an educational intervention, to enable junior doctors to build their skills and confidence in navigating end of life discussions which they agreed would provide insight into the benefit of this type of training and may be extrapolated to the heart failure population. 9.5.1 Multi-disciplinary teams 71.The core specialist heart failure multidisciplinary team (MDT) should work in collaboration with the primary care team, and should include: a lead physician with a subspecialty interest in heart failure (usually a consultant cardiologist) who is responsible for making the clinical diagnosis a specialist heart failure nurse a healthcare professional with expertise in specialist prescribing for heart failure. 72.The specialist heart failure MDT should directly involve, or refer people to, other services, including rehabilitation services, and tertiary and palliative care, as needed. [2018] 73.The specialist heart failure MDT should: diagnose heart failure give information to people newly diagnosed with heart failure (see section 9.4.6) manage newly diagnosed, recently decompensated or advanced heart failure (NYHA [New York Heart Association] class III to IV) heart failure optimise treatment start new medicines that need specialist supervision continue to manage care after an interventional procedure such as implantation of a cardioverter defibrillator or cardiac resynchronisation device manage heart failure that is not responding to treatment. [2018] Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.5.2 Transition between heart failure care settings 74.The primary care team should carry out the following for people with heart failure at all times, including periods when the person is also receiving specialist heart failure from the MDT: ensure effective communication links between different care settings and clinical services involved in the person s care lead a full review of the person s heart failure care, which may form part of a long-term conditions review recall the person at least every 6 months and update the summary and clinical record ensure that changes to the clinical record are understood and agreed by the person with heart failure and shared with the specialist heart failure MDT arrange access to specialist heart failure services if needed. [2018] 9.5.2.1 Care after an acute event For recommendations on the diagnosis and management of acute heart failure see NICE s guideline on acute heart failure. 75.People with heart failure should generally be discharged from hospital only when their clinical condition is stable and the management plan is optimised. Timing of discharge should take into account the wishes of the person and their family or carer, and the level of care and support that can be provided in the community. [2003] 76. The primary care team working within the specialist heart failure MDT should take over routine management of heart failure as soon as it has been stabilised and its management optimised. [2018] 9.5.2.2 Writing a care plan 77.The specialist heart failure MDT should write a summary for each person with heart failure that includes: diagnosis and aetiology medicines prescribed, monitoring of medicines, when medicines should be reviewed and any support the person needs to take the medicines functional abilities and any social care needs social circumstances, including carers' needs. [2018] 78.The summary should form the basis of a care plan for each person, which should include. plans for managing the person s heart failure, including follow-up care, rehabilitation and access to social care symptoms to look out for in case of deterioration a process for any subsequent access to the specialist heart failure MDT if needed contact details for: a named healthcare coordinator (usually a specialist heart failure nurse) local heart failure specialist care providers, for urgent care or review additional sources of information for people with heart failure. [2018] Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 79.Give a copy of the care plan to the person with heart failure, ther family or carer if appropriate, and all health and social care professionals involved in their care. [2018] 9.5.3 Information and support needs regarding diagnosis and prognosis 80.When giving information to people with heart failure, follow the recommendations in the NICE guideline on patient experience in adult NHS services. [2018] 81.Discuss the person's prognosis in a sensitive, open and honest manner. Be frank about the uncertainty in predicting the course of their heart failure. Revisit this discussion as the person's condition evolves. [2018] 82.Provide information whenever needed throughout the person s care. [2018] 83.Consider training in advanced communication skills for all healthcare professionals working with people who have heart failure. [2018] 9.5.3.1 First consultations for people newly diagnosed with heart failure 84.The specialist heart failure MDT should offer people newly diagnosed with heart failure an extended first consultation, followed by a second consultation, to take place within 2 weeks if possible. At each consultation: discuss the person s diagnosis and prognosis explain heart failure terminology discuss treatments address the risk of sudden death, including any misconceptions about that risk encourage the person and their family or carers to ask any questions they have. [2018] Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 10 Advanced heart failure and palliative care The update to the heart failure guideline includes topics where new evidence has emerged since the publication in 2010. A review of new evidence published after 2010 was carried out in order to determine whether any changes to current recommendations where likely to be required. The decision on which topics to include in the update of the guideline was made following consultation of the scope. In this section new evidence was reviewed on the use of diuretics, domiciliary oxygen therapy and criteria for discussing ICD deactivation in patients with advanced heart failure, and the use of validated risk tools to identlfy patients with an increased risk of mortality. 10.1 Diuretics in advanced heart failure The use of diuretics is undoubtedly helpful in cases of systemic fluid overload or pulmonary congestion, and remain the only group of medication where there is consensus about its benefit in relieving the breathlessness in patients who have heart failure with preserved left ventricular ejection fraction (HFPEF). An important question arises in patients with advanced heart failure receiving palliative care in the community, is which route of administration of diuretics is most clinically and cost effective? 10.1.2 Review question: Which route of administration of diuretics (intravenous (IV), subcutaneous or oral) is most clinically and cost effective in people with advanced heart failure who are in the community, including patients receiving palliative care? For full details see review protocol in appendix A. Table 141: PICO characteristics of review question Population Advanced heart failure in the community Interventions / comparators IV diuretics (furosemide or torsemide) (continuous or bolus) + oral metolazone/thiazides IV diuretics (furosemide or torsemide) (continuous or bolus) alone Subcutaneous diuretics (furosemide or torsemide) +/- oral metolazone/thiazides Oral diuretics (bumetanide or furosomide and/or metolazone/thiazides). All compared to each other Thiazides are limited to: Bendroflumethiazide (Bendrofluazide) Cyclopenthiazide Chlorthalidone / Chlortalidone Indapamide Xipamide Metolazone Outcomes CRITICAL Quality of life Unplanned hospitalization Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 IMPORTANT Change in dyspnoea Weight change / change in oedema Change in NYHA class Patient and carer satisfaction Time to death (survival) Successful administration of intervention Study design Systematic Review RCT 10.1.3 Clinical evidence A search was conducted for randomised trials and systematic reviews of randomised trials comparing the effectiveness of different modes of administration of diuretics in people with advanced heart failure in the community. No relevant studies were identified. See appendix I for the excluded studies table. 10.1.4 Economic evidence Published literature No relevant health economic studies were identified. See also the health economic study selection flow chart in appendix D. 10.1.5 Evidence statements Clinical No relevant published evidence was identified. Economic No relevant economic evaluations were identified. 10.1.6 Recommendations and link to evidence Recommendations No recommendation Research recommendation In people with advanced heart failure and significant peripheral fluid overload, what is the clinical and cost effectiveness of oral, subcutaneous and intravenous diuretic therapy in the community? Relative values of different outcomes The committee agreed that the outcomes critical for decision making were quality of life, unplanned hospitalisations (count rate) and unplanned hospitalisations (number of bed days), while the outcomes change in dyspnoea, weight change/change in oedema, change in NYHA class, patient and carer satisfaction, time to death or survival and successful administration of the intervention were important for decision making. Quality of the clinical evidence No clinical evidence was identified for inclusion within the review. Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Recommendations No recommendation Research recommendation In people with advanced heart failure and significant peripheral fluid overload, what is the clinical and cost effectiveness of oral, subcutaneous and intravenous diuretic therapy in the community? Trade-off between clinical benefits and harms As no randomised controlled studies were found that addressed the review question, the committee was not able to make a recommendation on the clinical effectiveness of IV and oral diuretics delivered in the community. The committee decided to make a research recommendation to establish the added value of IV or subcutaneous diuretics (in terms of its clinical and cost effectiveness) in the management of advanced heart failure, for the reasons discussed below. Trade-off between net clinical effects and costs No previously published economic evaluations were identified. Unit costs were not presented for this review due to the lack of clinical evidence available for the committee to make a judgement of cost effectiveness of the routes of administration of diuretics. However, the committee noted that delivering diuretics subcutaneously and intravenously would incur a higher cost to the NHS compared to administering oral diuretics due to the additional equipment and staff costs of delivery The committee agreed that due to the greater cost of subcutaneous and IV diuretics therapy compared to oral diuretics, it was important that an assessment of the cost effectiveness of these different administration routes was included in the research recommendation. Other considerations The committee considered the use of IV and subcutaneous diuretics in people with advanced chronic heart failure to be an area of high priority for future research. The committee highlighted that the delivery of these treatments in the community was variable across the country and was dependant on whether or not commissioning for the service was in place. The committee noted that for many advanced heart failure patients, some of whom may be approaching the end of their life, the focus of treatment may shift to symptom relief, admission avoidance, maintaining quality of life and minimising discomfort. These patients may become less responsive to conventional oral doses of loop diuretics and resistance can occur. The committee discussed whether subcutaneous diuretics may be more effective than oral diuretics but this route requires delivery by healthcare professionals. Likewise, IV diuretics could prove to be more effective than oral and subcutaneous diuretics in managing symptoms, but they are invasive, may not be feasible or appropriate in people in the later stages of heart failure. For those reasons, the committee decided to make a research recommendation to establish the added value of IV or subcutaneous diuretics (in terms of its clinical and cost effectiveness) in people with advanced heart failure, with significant peripheral fluid overload, in the community. The committee acknowledged the BHF funded pilot study Report-IV-Diuretics-August-2014.pdf) which consisted of a 2 year project in 10 NHS organisations across the UK in both urban and rural areas to assess Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Recommendations No recommendation Research recommendation In people with advanced heart failure and significant peripheral fluid overload, what is the clinical and cost effectiveness of oral, subcutaneous and intravenous diuretic therapy in the community? whether funding a home or community based IV diuretics service was safe, clinically effective, cost effective and well received by patients and carers. The committee noted that this study was not randomised and therefore did not meet the methodological threshold for inclusion within this review. 10.2 Domiciliary oxygen therapy in people with advanced heart failure Breathlessness is a common symptom in advanced heart failure even with optimal pharmacological and non pharmacological treatments and the absence of clinical pulmonary oedema. Current British Thoracic Society guidelines (2015)142 .for home oxygen state that only hypoxaemic patients with PO2 below 7.3kpa or 8 (with peripheral oedema, polycythaemia or pulmonary hypertension) should receive any form of home oxygen therapy except for a specific group with sleep disordered breathing. They specifically state that palliative oxygen therapy should not be provided to non hypoxaemic or mildly hypoxaemic patients. However, the evidence base for these recommendations was limited Therefore an up-to date review of the literature in this area is warranted. 10.2.2 Review question: What is the effectiveness of domiciliary oxygen therapy in people with advanced heart failure For full details see review protocol in appendix A. Table 142: PICO characteristics of review question Review population Adults (aged 18 years and over) with advanced heart failure (whether living in a care home (community residential facility), at home or in a hospice). These patients may be approaching the end of their life and may be receiving other palliative care services. Trials of patients with heart failure and other co-morbidities such as sleep apnoea and COPD will be included (however, see exclusions). Interventions/co mparators Domiciliary oxygen therapy (repeated long term use (daily availability)) No oxygen therapy o Medical air o Handheld fan o No treatment Different doses of oxygen will be pooled in the analysis. Outcomes CRITICIAL Quality of life at 2 weeks (Continuous) Change in breathlessness at 2 weeks (Continuous) Unplanned hospitalization at 4 weeks (Count rate) Unplanned hospitalization at 4 weeks (number of bed days) Patient and carer satisfaction 2 weeks (Continuous) Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 IMPORTANT Change in exercise capacity at 2 weeks (Continuous) Change in NYHA class at 2 weeks (Continuous) Shorter term time points will also be extracted if reported in the studies but may be downgraded for indirectness in consultation with the GC. Study design Systematic Review RCT 10.2.3 Clinical evidence A search was conducted for randomised trials comparing the effectiveness of domiciliary oxygen therapy versus no oxygen therapy or usual care as treatment for the symptoms (particularly breathlessness) of advanced heart failure. One study was included in the review63 which is summarised in Table 143 below. The study was a HTA report which was stopped early due to poor adherence to the prescribed oxygen therapy in the intervention arm of the trial. Evidence from this study is summarised in the clinical evidence summary below (Table 144). See also the study selection flow chart in appendix C, forest plots in appendix E, study evidence tables in appendix F, GRADE tables in appendix H and excluded studies list in appendix I. The study originally included a third arm which comprised nocturnal oxygen therapy (assumed to be 8 hours per night). This arm of the trial was dropped before trial completion due to problems with both centre and patient recruitment. The study authors reported data for this arm of the trial for several outcomes including quality of life. The study authors conducted an exploratory analysis, including all 3 treatment arms and found no significant difference between the nocturnal therapy (NOT) and long term oxygen therapy (LTOT) arms, therefore the authors combined these arms and compared them against the best medical therapy (BMT) arm for participants recruited up until 30 April 2013. To avoid double counting and maximise the number of participants analysed in either arm we have not included this comparison and included only the data reported for LTOT versus BMT at 3 months for this outcome. Table 143: Summary of studies included in the review Study Intervention and comparison Population Outcomes Comments Intervention 1: Long term oxygen therapy (LTOT) prescribed for 15 hours per day including overnight hours. Nocturnal oxygen therapy (NOT) (assumed to be 8 hours per night) Comparator: Best medical therapy (BMT) which consisted of Participants with severe heart failure with NYHA class III or IV left ventricular systolic dysfunction receiving optimal medical therapy who were stable but severely symptomatic Age (mean (SD)): Quality of life (MLWHF) at 3 months Quality of life months Hospitalisation at NRS for breathlessness at 6 minute walk test at 6 months Outcomes were downgraded for indirectness due to the long follow up period Chronic Heart Failure Domiciliary oxygen therapy in people with advanced heart failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Study Intervention and comparison Population Outcomes Comments maximally tolerated medical management and target doses of a renin-angiotensin system inhibitor, a beta-adrenoceptor antagonist and an aldosterone antagonist Gender (M/F): Ethnicity not reported UK Domiciliary oxygen therapy in people with advanced heart failure Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Table 144: Clinical evidence summary: long term oxygen therapy versus best medical therapy Outcomes No of Participants (studies) Follow up Quality of the evidence (GRADE) Relative effect Anticipated absolute effects Risk with Best medical therapy Risk difference with Long term oxygen therapy (95% CI) Quality of life (MLWHF) VERY LOWa,b,c due to risk of bias, indirectness, imprecision The mean quality of life (MLWHF) in the control groups was The mean quality of life (MLWHF) in the intervention groups was Quality of life (EQ- VERY LOWa,b due to risk of bias, indirectness The mean quality of life (EQ-5D-3L) in the control groups was The mean quality of life (EQ-5D-3L) in the intervention groups was (0.1 lower to 0.12 higher) VERY LOWa,b,c due to risk of bias, indirectness, imprecision Rate ratio 360 events per 1000 person-years 54 fewer events per 1000 person-years (from 165 fewer to 119 more) NRS for breathlessness (Scale from: 0 to 10) VERY LOWa,b,c due to risk of bias, indirectness, imprecision d The mean NRS for breathlessness in the intervention group was (1.57 lower to 0.31 higher) 6 minute walk test 74 VERY LOWa,b due to risk of bias, indirectness d The mean 6 minute walk test in the intervention group was 0.64 metres higher (34.54 lower to 35.82 higher) (a) Downgraded by 1 increment if the majority of the evidence was at high risk of bias, and downgraded by 2 increments if the majority of the evidence was at very high risk of bias. (b) The majority of the evidence was from studies with follow up periods longer than stated by the review protocol. (c) Downgraded by 1 increment if the confidence interval crossed 1 MID or by 2 increments if the confidence interval crossed both MIDs. (d) Unable to calculate as the study reported the result as a mean difference. Chronic Heart Failure Advanced heart failure and palliative care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 10.2.4 Economic evidence Published literature No relevant health economic studies were identified. See also the health economic study selection flow chart in appendix D. 10.2.5 Evidence statements Clinical One study including 114 people with severe heart failure was identified for inclusion within the review. The evidence compared long term oxygen therapy (prescribed for 15 hours per day) with best medical therapy (consisting of maximally tolerated medical management and target doses of a renin-angiotensin system inhibitor, a beta-adrenoceptor antagonist and an aldosterone antagonist). The evidence from this study was very low quality due to a risk of bias, imprecision due to wide confidence intervals and indirectness of the outcomes due to the long follow up period. The study was terminated early. No clinical effect was observed for the outcomes quality of life, breathlessness and the 6 minute walk test. A clinically important reduction in hospitalisations was observed. No evidence was found for the outcomes patient and carer satisfaction, change in NYHA class and unplanned hospitalisation (number of bed days). Economic No relevant economic evaluations were identified. 10.2.6 Recommendations and link to evidence Recommendations Do not offer long-term home oxygen therapy for advanced heart failure. Be aware that long-term home oxygen therapy may be offered for comorbidities, such as for some people with chronic obstructive pulmonary disease (see section 1.2.5 on oxygen in the NICE guidline on chronic obstructive pulmonary disease in over 16s. [2018] Relative values of different outcomes The committee agreed that the outcomes critical for decision making were quality of life, change in breathlessness, unplanned hospitalisation (both number of bed days and number of events) and patient and/or carer satisfaction. The important outcomes for decision making were change in exercise capacity and change in NYHA class. Quality of the clinical evidence One study was included in the review. The quality of the evidence was very low. This was due to a high risk of bias resulting from a lack of blinding and incomplete outcome data for a number of the reported outcomes. All of the outcomes were also downgraded due to the indirectness of the follow-up period. The committee originally specified short follow-up points for the outcomes of interest as they felt these would be the most appropriate for a population consisting of people with advanced heart failure who may be receiving palliative care. The included evidence reported follow-up periods of 3 months as a minimum. The committee discussed that this indicated the study population may not have been representative of people with advanced disease. The study also reported some results for a third arm nocturnal oxygen therapy (NOT) which was discontinued early due to issues with trial funding. The committee agreed that due to this early discontinuation and the Chronic Heart Failure Advanced heart failure and palliative care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 selective nature of the outcome reporting on this arm of the trial, the data reported for this arm would not be analysed. Trade-off between clinical benefits and harms In people with severe heart failure, domiciliary oxygen prescribed for up to 15 hours per day was associated with no clinically important effect on quality of life, breathlessness or the 6 minute walk test. A clinically important benefit (also consistent with clinical harm due to wide confidence intervals) was observed with regard to the number of hospitalisations. The committee discussed the risks and harms associated with oxygen therapy, which included the potential of significant anxiety for the patient caused by the noisy and imposing equipment involved. The potential risk of combustion for people in unsatisfactory living conditions was also acknowledged, that is, people who smoke or live with others who smoke The committee also discussed the possibility of high oxygen levels to further damage heart tissue as a potential harm of oxygen therapy.The committee agreed that the provision of oxygen should be based on a holistic needs assessment and would be very specific to each individual. Oxygen therapy would not be withheld from a person where a potential benefit was identified or where significant relief of breathlessness had been observed, however, the routine prescription of oxygen was not necessary for people with advanced heart failure. Trade-off between net clinical effects and costs No previously published economic evaluations were identified for this review. The committee agreed that domiciliary oxygen therapy is likely to be expensive as it requires regular visits to deliver new tanks of oxygen and associated equipment, as well as safe installation, risk assessment and maintenance of the oxygen. In addition, people on oxygen therapy should be regularly reviewed to assess their oxygen levels. The clinical evidence suggested there was no clinically important effect on quality of life, although this was highly uncertain. Due to the poor quality of the clinical evidence the committee could not assess the cost effectiveness of domiciliary oxygen therapy in people with advanced heart failure. However, due to the potentially high cost, and the known risks of oxygen therapy (described in the trade-off between clinical benefits and harms above) the committee decided that long term oxygen therapy should not be routinely offered to people with advanced heart failure. Current practice is thought to be widely variable, but is not commonly used as part of routine care in people with heart failure. The committee considered that this recommendation would not substantially change current practice, but could lead to some small cost savings. Other considerations The committee felt that it was important to be aware that people with advanced heart failure with other comorbid conditions may benefit from oxygen therapy. Examples where this may be the case include chronic lung disease such as COPD (https://www.nice.org.uk/guidance/cg101), or patients with pneumonia or pulmonary embolism. 