Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Co-ordination: The evidence suggested that patients find the healthcare system poorly co-ordinated and confusing to navigate. This leads to increased treatment burden, and sometimes even conflicting advice. Models to improve co-ordination suggested by health care professionals (HCPs) in the studies included a single care-coordinator, a shared-care protocol between primary and secondary care, and using HF nurses as a bridge between primary and secondary care. Communication: There was a finding of poor communication across service boundaries, especially between hospital-based and primary / community services, which can lead to extra burden on patients, and under-treatment. Some of the factors HCPs felt contributed to this were a fragmented IT system and lack of time available within appointments. Patients reported that there was a paucity of information about their condition after they had been discharged from HF services. Contact/Access: The evidence suggested that people with HF can struggle to access the services they require, and referral / re-referral to HF specific- services can be inconsistent. People with heart failure felt that things may be improved if they had a primary contact, with whom they had a relationship, and most would choose their GP. It was reported that HF clinics and HF nurses can provide easy access to urgent assessment and treatment where people are able to access them. Role of specialist HF services: Expectations of HF services, such as whether they will take over total care of the patient (that is, including all comorbidities), and at what point they will discharge patients to primary care, differed between professionals working within, compared with those working outside of HF-services. Some professionals found that managing issues beyond HF in the HF clinic may cause an unwanted loss of continuity in primary care and take time away from HF management. Professionals in HF services felt the decision about whether to keep a patient under follow-up in the HF clinic is complex and taken on an individual basis. Quality of the evidence The committee acknowledged the varied confidence ratings for the different subfindings in the review, some of which were fairly low. The members weighed the confidence in the individual findings with their own experience as patients and health professionals in the NHS, and agreed that the subfindings were broadly consistent with their own experiences. Continuity: The subfinding of lack of continuity was rated as moderate confidence, due mainly to methodology concerns. The subfinding of primary care as a key player in continuity was rated as moderate confidence due to minor concerns in coherence and relevance. The committee agreed with these subfindings, but also noted that general practitioners were less able to offer continuity than historically, due to different ways of working. The subfinding about discharge from HF clinic was rated as low confidence due to methodological concerns and being limited to two papers, but the committee felt that this subfinding agreed with their experiences. The lay Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 members explained how they built up a relationship with the HF clinic whilst they experienced significant health issues, and they felt vulnerable transitioning away from this to primary care. They were less sure about the major distinction being whether appointments were given or requested, and suggested the issue was more around the certainty of the hospital setting compared with uncertainty in, and continuity through, the GP setting. Co-ordination: The finding of poor co-ordination between services was of moderate confidence, mainly due to methodological concerns, and the finding of models to co-ordinate care was rated low confidence. Lay members explained that there were resources out there, but people with heart failure were not told about them, and they were therefore under- utilised. The committee agreed that HF nurses were usefully able to provide a bridge between primary care and hospital-based services. The committee felt that HF specialist nurses would ideally co-ordinate care of HF for people who are being actively managed by specialist services, but that this could be passed to general practitioners once the patient was stabilised and on optimal treatment. Communication: The subfinding of poor communication between services was rated as moderate confidence due to methodological limitations. The subfindings of barriers to clear communication was rated as low confidence due to methodological and adequacy concerns. The professionals on the committee felt that problems with communication occurred in their workplace. It was their experience that they commonly needed to have a three-way conversation or more, and that services can require a full-time administrator in order to facilitate good communication. The committee noted that the system relied upon letters going between care settings, in the absence of a universal NHS information system. The subfinding of information after discharge from HF services being insufficient was rated as very low due to methodology and it having come from only one paper. However, the committee recognised that this was a significant issue. Contact/Access: The subfinding of difficulty accessing routine care was rated low confidence due mainly to methodological limitations. The subfinding of a primary contact person was rated as very low confidence, but was seen to overlap with other findings to a large extent. The subfinding regarding access to urgent care was rated low confidence due to concerns over methodology, relevance and adequacy. Role of specialist HF services: The committee felt that some of these subfindings were inevitable in an organisation like the NHS for a condition that crosses boundaries between services. The subfinding on the expectations on HF services was rated very low confidence due to methodological concerns and lack of depth. However the committee recognised the experience of a member who had been involved in creating a local HF pathway and experienced the same issue: that people involved in different aspects of HF care had different expectations of the service. They also recognised that GPs differ in their desire to have specialist input and facility to manage heart failure and its comorbidities. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 The subfinding of focus for HF services was rated as low confidence due to concerns in methodology, relevance and adequacy. The committee debated these findings. Some felt that that it was impossible for cardiologists to have the expertise and capacity to provide care for all the healthcare needs of patients with heart failure whose co-morbid conditions are complex, and therefore supported a focussed approach. Others felt that compartmentalisation of the clinical features into different distinct disorders does not help patients, and their own experience is that patients really value the attempt to provide an overview of all of their diagnoses and treatment. The subfinding on the decision to keep patients on the caseload was rated as low confidence due to concerns on relevance and adequacy of the data from only two papers. The committee felt that while it was important that decisions were made on an individual basis, the NICE guidelines should promote greater consistency and transparency in these decisions. Trade-off between benefits and harms The guideline committee appreciated the richness of the data in this qualitative review. They recognised that the nature of qualitative evidence offered an opportunity to identify recurring issues and examples of good practice. Continuity: The committee acknowledged that it is sometimes necessary for patients to move between different teams / services. For example, if a patient has been unwell, it is essential for the specialist HF service to follow- up and review their management and adjust any medication as necessary; but that once the patient is stable it is often appropriate to transfer routine care back to the GP. However, GPs and lay members had experience of patients receiving care by the specialist HF service without the involvement of their GP, to whom the patient was subsequently discharged. The committee agreed that an initial care plan should be developed by the HF MDT, and that this plan and subsequent contacts with the MDT should be communicated to primary care. The patient and primary care physicians should also be informed that intense management by the HF MDT is often only needed for a limited period, and will be replaced by monitoring in primary care once their condition is stabilised. The committee considered efficient and easy access back into specialist HF MDT when needed, was very important to ensure continuity of care for the patient. This could be achieved by having an open appointment arrangement with the specialist MDT should difficulties arise. Having primary care embedded within the MDT may facilitate this transfer. The committee felt that the role of the general practitioner in offering a longitudinal and individualised approach should be emphasised. They felt that the patient s clinical record should be reviewed by the general practitioner at least every six months, whether or not the person is being routinely managed by HF specialist services. This should enable active management of comorbidities and early identification of other service needs, and prevent loss of contact, and thereby encourage continuity of management between primary care and heart failure services. The idea of a GP-led review is not to duplicate the work of the MDT, but to address the wider concerns of the person with CHF. This guideline already recommends at least 6 monthly clinical reviews of patients with heart failure, and GP- Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 review of the clinical record could easily be incorporated into this existing review where patients are being managed in primary care. Even where patients are being routinely seen in the MDT, those with other long-term conditions may already be attending primary care for reviews, and the HF review could be usefully added in to existing appointments. Co-ordination: The committee agreed that coordination between services should be a priority. The committee recognised that a single care coordinator was already advocated in the multimorbidity guideline, and this would be helpful in HF. It was felt that the named healthcare coordinator would usually be the HF specialist nurse where a person was being actively managed by the multidisciplinary specialist HF team, but at the point of transfer to routine management in primary care, this would usually change to the patient s GP. Members also advocated collaborative working between primary and secondary care through the MDT. Lay members emphasised that there needed to be better accountability, so that decisions were not only made, but also followed through and followed up effectively. Therefore future plans, who will do what, and when, as well as where/when the next routine review will take place, should form an essential part of the care plan. Communication: The committee felt that it was important that patients have access to their health information, for their own reference, and also to inform others. There was a suggestion that patients could hold their heart failure notes, but it was felt that this was not yet practical. However, it should be the case that they receive a copy of everything that is sent about them, as is already advised in CG138, including their current care plan after every formal review. The committee attempted to define what would be included in the summary of the patients status and how the care plan would be formulated, but appreciated that this would vary depending on where the patient was in the HF pathway, and other individual factors. The committee agreed that it is essential that the patient is given a named contact and knows who is going to follow them up and when, along with current medication. After contact details and follow-up arrangements, the most important things to include were thought to be the diagnosis, current treatment, red flag signs that HF is deteriorating, and signposting to further information / sources of support. Where appropriate, it would also include aetiology of HF, social circumstances, carer needs, how they can access rehabilitation and other resources. The committee acknowledged that the full summary of status and care plan may not be ready to provide to the patient during their appointment in order that they can take a copy home with them, and agreed that it may comprise a letter to the patient and GP following the appointment. Letters should use appropriate language to communicate to the GP, with a glossary or similar to make them accessible to patients. It is not intended that two sets of letters should be produced. Contact/Access: It was seen as particularly important that patients and their carers know where to get support in both routine and urgent circumstances, as per the current patient experience guideline. Pathways could be devised Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 locally, but the committee felt that it was important that patients with heart failure could contact the heart failure clinic or service if requiring advice or urgent care. It was acknowledged that two way communication between heart failure specialists and GPs is essential to ensure patients are well managed. Specialists need to provide a clear plan to allow medication lists to be updated and GPs also have a responsibility to inform the specialist team when the condition of the patient changes. The ideal system would be to allow all members of the MDT to access hospital, community and GP notes. However this is not yet possible in most areas. Role of specialist HF services: The committee acknowledged that local dialogue about what HF services should provide for people with CHF might be useful, but may not be practical. The reports of the complexity of treating the comorbidities of patients with CHF, the nature of sub-speciality medical training, and the lack of a universal information system, highlighted the fact that the general practitioner, or another generalist such as a geriatrician, should be actively involved throughout the heart failure pathway. It was felt that HF specialists should primarily be involved in HF optimisation, while collaborating with other healthcare providers, who would be providing for the wider needs of patients. Trade-off between net effects and costs No published economic evaluations were identified. The committee agreed that ensuring a care plan was in place and shared with the patient and necessary healthcare professionals was important to improve current barriers in co-ordination and communication for people with heart failure. The committee noted that there may be some small costs associated with the time spent on the administrative tasks such as the writing and dissemination of the care plan. However, the committee felt that providing a care plan was already standard practice in many cases, and could be achieved by changes to current paperwork rather than additional time and resource. The committee agreed that ensuring care plans are regularly updated and shared would likely improve patient treatment by reducing cases of under or over treatment and any resultant adverse events. The committee believed that the reduced treatment burden would improve patient quality of life and reduce patients anxiety about their condition and treatment. Therefore, overall the committee considered that any additional administrative tasks and care plans are likely to be a cost-effective use of resources. Other considerations The current experience of HF care across the country was felt to be variable due to a number of factors These included the degree to which GPs were engaged with national programmes such as QOF and NICE Quality Standards programme; the degree to which GPs are involved in regionally agreed long- term conditions frameworks or other benchmarking; locally agreed protocols; and the involvement of the third sector, such as patient advocate groups, in facilitating access to care. The committee felt that clarifying the roles of primary care and the rest of the multidisciplinary specialist HF team would enable commissioners and others to reduce variation by defining the structures for high quality HF care, including effective co-ordination and communication. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 The GP members of the committee spoke about their current involvement in the care of people with HF. They felt that it was essentially the same as for any other patient with a long term condition, and approached it in the same way. However, HF was among the most challenging conditions to manage, as people with HF tend to have multiple, complex comorbidities. This led the committee to think about including aspects of the multi-morbidity guidance when thinking about reviewing and co-ordinating care for people with HF. The committee highlighted an important sub-population of HF patients, being those that are housebound. It was recognised that they are often not reviewed by HF clinics, and not seen in the GP surgery, and therefore perhaps not routinely seen by the primary healthcare team either. It was felt that some people in these circumstances only received care once they were acutely unwell. The committee intended that these patients should be included in the recommendations regarding six-monthly review. It was reported that, in one example, reviews for housebound patients with HF were sometimes delegated to district nurses. The committee felt that HF monitoring and review should be done by someone with competencies in clinical examination and medicines optimisation. 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 Information and support needs regarding diagnosis and prognosis Communication is the one of the key determinants of successful management of chronic diseases. The diagnosis of heart failure is often a shock to patients. Heart failure is a complex disorder which requires active participation of patients in its management. A large literature has developed about the perceptions and misperceptions that the diagnosis entails and about the prognosis of heart failure. Different features of the disease process are highlighted by patients and the various professional groups involved in the management of heart failure. This review aimed to identify the key factors that need to be communicated about the diagnosis of heart failure to patients and their carers, the information needed about the disease and the support required to allow care to be optimised. 9.4.2 Review question: What are the information and support needs to be considered when communicating a diagnosis and consequent prognosis, to people with heart failure, their families and carers? For full details see review protocol in appendix A. Table 137: Characteristics of review question Objective The aim of this review is to identify the information and support needs of people with heart failure, their families and carers, when healthcare professionals are communicating a diagnosis and prognosis. Population and setting Patients with heart failure in a UK primary care, outpatient or community setting. Studies that relate to patient/staff experiences of communication regarding diagnosis or prognosis that occur during a patient s hospitalisation for heart failure will be included, where the issues identified are also relevant to communication in the community/outpatient setting. Patient, family and carer information and support needs will be considered. Context Any description of support and information needs of patients, families or carers relating to communication of a diagnosis or the prognosis of heart failure. Views can be provided by patients, families, carers or healthcare staff Review strategy Synthesis of qualitative research: thematic analysis- information synthesised into main review findings. Results presented in detailed narrative format. Quality of the evidence was assessed by a GRADE CerQual approach for each review finding. 9.4.3 Qualitative evidence This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual.236 Methods specific to this review question are described in the review protocol in appendix A. Declarations of interest were recorded according to NICE s 2014 conflicts of interest policy. 9.4.3.2 Summary of included studies A search was conducted for qualitative studies exploring the communication and support needs of people with heart failure at the time when diagnosis and prognosis are relayed to them by health Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 these are summarised in Table 138 below. Key findings from these studies are summarised in Section 9.4.3 below. See also the study selection flow chart in Appendix C, study evidence tables in appendix F, and excluded studies lists in appendix I. Table 138: Summary of studies included in the review Study Design Population Research aim Comments Semi-structured interviews with patients + carers. Thematic analysis. N=10 CHF patients recently discharged from hospital and one person each that they lived with and nominated a carer. Age: mean 72 (SD Severity NYHA class II-IV (6/10 NYHA class III) Explore the impact of heart failure on the lives of older patients and their informal carers. Part of larger study on palliative needs. Setting: UK, Barnsley. Barnes Individual interviews with patients + carer (if they wished to do so) and focus groups with HCPs. Thematic analysis. N=44 CHF patients (NYHA class III or IV) recruited from GP practices. Age: median 77 focus groups Age range: 27-58 Explore the attitudes of older people and primary care professionals towards communication of diagnosis, prognosis and symptoms in heart failure. Setting: four geographical locations in the UK: East Devon, West Hampshire, Bradford and Barnsley. Browne Individual interviews with patients + carer (if they wished to do so) and interviews or focus groups with HCPs. Thematic analysis using the Framework method. Coding framework linking data categories to an exploratory model provided by a theory known as Normalisation Process Theory. N=30 CHF pts with advanced heart failure (NYHA class III or IV) and a history of hospital admissions. Age: mean 72 interviews, 6 focus groups) Examine patient, carer, and professional perspectives on current management of advanced heart failure and barriers and facilitators to improved care. Setting: one health board in Scotland, UK. Doos Individual interviews with patients + carer (if they wished to do so), taped and transcribed verbatim. Thematic analysis N=6 pts with CHF and comorbid COPD recruited at the time of hospital discharge. Age: mean 79 Explore experiences of multi-morbid COPD and HF patients during, and shortly after a hospital stay. Also, to focus Mixed methods study: Survey followed by interviews. Setting: a large regional hospital in England, UK. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Study Design Population Research aim Comments using the principles of Grounded Theory (constant comparison). on patient and carer information needs on transitions and any perceived gaps in relation to their multi-morbidity. Open-ended narrative interviews with patients, taped and transcribed verbatim. Thematic analysis using a modified grounded theory approach, incorporating constant comparison. N=37 CHF pts at all stages of heart failure. Age range: 33-84 Examine whether heart failure patients awareness of the purpose and side effects of their medicines equips them to participate in informed discussions about treatments, how they cope with the condition and manage their medication. Setting: throughout the UK . Horne Open semi- structured interviews with patients, taped and transcribed verbatim. Thematic analysis using a Grounded Theory approach. N=20 CHF patients recruited by consultants and specialist nurses from two teaching hospitals. Age: mean 73 Severity NYHA class II-IV (11 class IV; 7 class III) Explore the experiences of patients with severe heart failure and identify their needs for palliative care. Setting: Doncaster, UK. Urban and rural communities situated in former coal mining area. Macdonald Secondary analysis of qualitative data of transcripts of interviews with patient. Use form of amplified analysis to fit themes to the Candidacy framework. N=20 CHF pts (a selection of transcripts from two previous HF studies) Age: range 56-86 advanced and 10 stable Contrast the help- seeking and access to care in cancer and heart disease in order to extend concepts about illness identity, and its relationship to a concept known as Candidacy Compares CHF with cancer. Data was taken from the Colorectal Cancer, End-Stage HF and Stable HF studies. Setting: Scotland, UK. Murray In-depth interviews intervals for up to a year with patient. Following bereavement their informal caregivers were interviewed. Focus group of key professional carers identified by patients. N=20 pts with end stage heart failure (NYHA class IV) identified by consultants as outpatients. Age: mean 74 Compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non- malignant disease (heart failure). Setting: Edinburgh and Livingston, Scotland, UK. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Study Design Population Research aim Comments Thematic analysis using the techniques of narrative analysis. Selman ; Harding Semi-structured interviews with patints, their carers and HCPs. Thematic analysis using a constant comparison approach. N=20 CHF pts recruited from outpatient clinics and hospital wards. Age: mean 69 Severity NYHA class III-IV (14 class III) N=12 HCP from cardiology and palliative care Formulate guidance and recommendations for improving end- of-life care in chronic heart failure. To generate data on patients and carers preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. Generate recommendations for the appropriate provision of feasible and acceptable information to chronic heart failure patients and their family carers, in line with UK and international policy guidelines. Setting: London, UK. Simmonds ; Glogowska ; Fry Qualitative study using ethnographic methods (in-depth interviews, observation, impromptu interviews, field notes, patient and carer diaries, patient medical records). Pts were followed individually throughout their interactions with healthcare for up to 11 months. In-depth N=31 pts with severe or difficult to manage heart failure and who had an unplanned hospital admission for CHF in the months. Age: mean 72 N=55 HCPs overall Identify critical points on heart failure patient pathways where risk of unplanned admission is increased and identify barriers to the implementation of evidence-based interventions. Explore perceptions and experiences of is linked to the dataset but did not report findings relevant to this review. Setting: three study sites, UK. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Study Design Population Research aim Comments interviews with a subsample of patients and/or carers. HCPs were observed delivering care for these pts. In- depth interviews with HCPs who cared for different pt. Thematic analysis involving constant comparison. (in-depth interviews with health care professionals working in multi- disciplinary teams that include specialist heart failure nurses when caring for the management of heart failure patients. Taylor Semi-structured interviews with patients and their carers (if they wished to do so). Thematic analysis using the Framework method. N=16 patients with a recent (<1 year) diagnosis of heart failure recruited from heart failure clinic. Age: median 78 Explore the experiences of patients with a recent diagnosis of heart failure with a focus on symptom onset and diagnosis parts of the pathway to explore how and when patients realised something was wrong and what the term heart failure means to them. Setting: central England, UK. Wingham Semi-structured and one focus group with carers of CHF patients and the person they cared for (on request of the carer). Thematic analysis using the Framework method. N=26 Carers of CHF patients who had been caregivers for at least 6 months. Age: mean 66 Identify the needs of caregivers supporting a person with heart failure and inform the development of a caregiver resource to be used as part of a home- based self- management programme. Setting: Cornwall, Birmingham and Leicester, UK. Abbreviations: Pt = people with chronic heart failure, HCP = healthcare professional, NYHA = New York Heart Association Functional Classification, COPD = chronic obstructive pulmonary disease 9.4.3.3 Qualitative evidence synthesis Table 139: Review findings Main findings Statement of finding Diagnosis of heart failure 1a. Communication is challenging Clinicians find the diagnosis itself and the ensuing communication around diagnosis challenging. 1b. Timing and setting Choosing the timing and setting of communicating the diagnosis is important. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Main findings Statement of finding 1c. Gradual process The persons comprehension of their diagnosis is seen as a gradual process which results in information and guidance around diagnosis being relayed to patients in a gradual manner. 1d. Terminology 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. Understanding heart failure 2a. Understanding of diagnosis Although there is variability in patients understanding of their diagnosis it is generally poor. 2b. Knowledge and management Patients desire for more knowledge about their condition and its management is highly individual. Discussion of prognosis 3a. Difficult conversations Staff reported difficulties in discussing 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. 3b. Understanding of prognosis Patients described that prognosis was rarely discussed and showed that their understanding of their prognosis was generally poor. 3c. Patients concerns Whilst patients desire for more knowledge about their prognosis was highly individual many were worried by the uncertainty of what the future held. Improving communication/ information flow 4a. Education and joint working Staff identified that communication with patients and family members would be improved through training in diagnosing and prognosticating heart failure, and through mutual education for staff from different specialities. 4b. Ongoing relationship Staff suggested for information and education to be delivered to the patient within an ongoing relationship and in an appropriate setting. 4c. Tailoring of information 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. 4d. Improving access to information Patients desire more detail, written information and greater access to support. 9.4.3.3.1 Narrative summary of review findings The review findings are grouped within four overarching findings, as follows: 1. Diagnosis of heart failure 2. Understanding heart failure 3. Discussion of prognosis 4. Improving communication/information flow Each of these four findings contain several key subfindings that are described below along with an evaluation of the quality including an explanation for the CerQual grading that appears with the subfindings in the summary tables in section 1.3.4. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 1. Diagnosis of heart failure Review subfinding 1a: Communication is challenging Clinicians find the first conversation disclosing the diagnosis of heart failure to the patient to be difficult. Some clinicians described the diagnosis of heart failure itself as challenging, making it even more difficult to relay information to patients. This subfinding was based on two studies.26, 133, 313 Methodological limitations were rated moderate concerns overall. Both studies were rated as moderate limitations due to lack of context and the role of the researcher, plus data analysis in one study and data richness in the other. Coherence was rated no or very minor concerns overall. Agreement between papers was good and appeared to fit well with related findings in other studies. Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was high. The data stemmed from two papers from the UK in a relevant population. Adequacy was rated as minor concerns. The subfinding was general, and although explicitly supported by only a limited number of studies, other studies found similar themes. The subfinding was descriptive but the richness of data was somewhat lacking. The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological and adequacy limitations. Review subfinding 1b: Timing and setting The reluctance by some GPs to diagnose patients meant that some patients received a shock diagnosis when admitted to secondary care. Receiving the diagnosis during an unplanned hospital admission was deemed unhelpful and inadequate by clinicians, patients and their carers (Simmonds 2015) as diagnosis could not be relayed in a sensitive manner to the patient and family who had no time to assimilate the information in this busy environment. Patients with good access to hospital- and community-based heart failure specialist nursing teams reported more positive experiences of communication regarding diagnosis. This subfinding was based on three studies.26, 117, 313 Methodological limitations were rated moderate concerns overall. Two studies were rated as moderate limitations due to lack of context and role of the researcher, plus data analysis in one study and data richness in the other. One study had serious limitations due to lack of context, role of the researcher, data collection and richness of data. Coherence was rated as minor concerns overall. Agreement between papers was good and appeared to fit well with related findings in other studies. The only findings that tended to be the other way are regarding the positive experience of patients with good access to specialist nursing teams. Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was high. The data stemmed from three studies from the UK in a relevant population. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Adequacy was rated as no or very minor concerns. The subfinding was general, and although explicitly supported by a limited number of studies, other studies found similar themes. The finding was descriptive and the richness of data was sufficient for this. The overall assessment of confidence was moderate, having been downgraded by one increment due to the combination of concerns in methodology and coherence. Review subfinding 1c: Gradual process Diagnosis was seen by healthcare professionals as a gradual process which in turn makes the communication of the diagnosis a gradual process. They emphasised the need to provide information and guidance as part of an ongoing conversation with the patient and family. Heart failure specialist nurses and GPs were seen as key to the success of this process. This subfinding was based on three studies.26, 133, 207, 313 Methodological limitations were rated moderate concerns overall. Two studies were rated as moderate limitations due to a lack of context and role of the researcher, plus data analysis in one study and data richness in the other. One study had serious limitations due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis. Coherence was rated no or very minor concerns overall. Agreement between papers was good. Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was very high. The data stemmed from three studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The subfinding was general, and although explicitly supported by a limited number of studies, other studies found similar themes. The finding was descriptive and the richness of data was sufficient for this. The overall assessment of confidence was moderate, having been downgraded by one increment due to the concerns in methodology. Review subfinding 1d: Terminology Clinicians stated that they felt that the terminology affected communication. They wanted patients to understand their condition but also wished to avoid upsetting them and extinguishing their hope. Only very few healthcare professionals described using the term heart failure ; it was regarded by most of them as an anxiety-invoking term (similar to a cancer diagnosis). So instead many resorted to using euphemisms (e.g. ageing heart , stiff heart , heart not pumping efficiently ) or paradoxically even more complex terminology (e.g. left ventricular failure ). These alternative explanations often led to poorer communication, confusion for people with heart failure and lack of interest in their diagnosis as a consequence. People with heart failure were often unaware of the term heart failure . Many described that the term was not mentioned initially but introduced later on by specialists, often leading to shock and confusion for the patients. 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. Five studies were rated moderate limitations: two studies due to lack of context and role of the researcher, plus data analysis in one study and data richness in the other. Another two studies due to lack in data richness, plus missing information on the topic guide in one, and lack of reflection on the role of the researcher and loose link between findings and conclusions in the other. The fifth study due to no reflections on role of researcher and lack of detail on methodology. One study had serious limitations due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis. Coherence was rated minor concerns overall. Agreement between papers was very good except one where healthcare professionals actually used the terminology heart failure with all their patients. 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 three studies from the UK in a relevant population. Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies in much detail. The overall assessment of confidence was moderate, having been downgraded by one increment due to the concerns in methodology and coherence. 2. Understanding heart failure Review subfinding 2a: Understanding of diagnosis There is variability in the complexity and depth of patients understanding of their diagnosis. Most patients showed poor knowledge and misunderstanding of their condition and its implications, including treatments, their importance, side effects and limitations. Many did not connect symptoms they had to their heart failure; some even deduced their diagnosis from the medications they were taking. The lack of understanding was often compounded by confusion and short-term memory loss that is associated with heart failure. However, other patients showed a high level of interest in their illness, were proactive in seeking information (e.g. online), knew how to manage their condition, and were well informed and equipped for informed exchanges with healthcare professionals about heart failure. In one study the authors noted, however, that this was an unusual group of younger patients and/or those with a background in health. Healthcare professionals were sympathetic to patients uncertainty about the meaning of their diagnosis and about treatments, as they were aware that a lack of time for communication contributed to poor understanding. Methodological limitations were rated serious overall. Five studies were rated moderate limitations due to a mix of reasons including a lack of the role of researcher, data richness and details of methodology. Three studies were rated serious limitations; one study due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis. Two studies due to the lack of richness of data, context and the role of the researcher, as well as a lack of information on data collection in one study and the reasoning for the choice of methods in the other. One study had very serious limitations due to limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Coherence was rated minor concerns overall. Agreement between papers was very good with the majority demonstrating patients lack of understanding of their diagnosis. Only very few papers also described that some patients had a very good understanding of their condition. As a certain degree of variability in people s understanding is expected and all papers were in agreement that the majority lacked the understanding, 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 nine studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The subfinding was general and supported by numbers of studies; it was descriptive and supported by the richness of data. The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and coherence. Review subfinding 2b: Knowledge and management Some patients did not want to know more about their diagnosis as it would cause them to worry, and they chose to put all their trust into healthcare professionals to make decisions for them. Yet, others described having received too little information about their diagnosis and some received contradicting information that caused them confusion. These patients felt that the lack of knowledge caused them panic attacks and anxiety about the practicalities of what to do in a crisis, for example. Methodological limitations were rated serious overall. Two studies were rated moderate limitations: one due to limitations in context, the role of researcher and data analysis, and another study due to missing information on the topic guide and the lack of data richness in sections relevant to this review. Three studies were rated serious limitations due to a lack of information on the role of the researcher, data richness as well as lack of rigour in research methods. Coherence was rated minor concerns overall. Agreement between papers was good in that they all reported a range of people s attitudes. 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 five studies from the UK in a relevant population. Adequacy was rated as no or very minor concerns. The subfinding was general and supported by numbers of studies; it was descriptive and supported by the richness of data. The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and coherence. 3. Discussion of prognosis Review subfinding 3a: Difficult conversations Staff noted that discussions of prognosis are difficult, given the difficulty of diagnosis in the first place and due to the unpredictable disease trajectory of heart failure, and they were reluctant to have them. 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 maintaining hope and a positive outlook when faced with a life-threatening illness. Some healthcare professionals Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 considered that patients may not want to know everything about their prognosis, perhaps hinting at a degree of paternalism or recognition of denial as a way of coping. Some felt it was more appropriate to address prognosis over time, given these uncertainties and in response to changing circumstances, particularly when a patient might be approaching the end of their life. A common professional perception was that these types of exchange between clinician and patient did not happen often enough. In one study cardiac staff confirmed that issues such as future care in the event of an exacerbation or end-of-life preferences are rarely raised with patients. It was suggested that lessons could be learnt from communication in cancer where clear information about prognosis is provided to patients. However, the staff reported having difficulties handling patient denial, discussing poor prognosis and dealing with the emotional involvement of patients and their families. It was said in this study that cardiac staff often lack the communication skills required to handle these sensitive issues. Methodological limitations were rated serious overall. Three studies were rated moderate limitations due to the lack of the role of the researcher, plus another two out of the following limitations: lack of context, data richness, data analysis or loose linkage between findings and conclusions. Two studies were rated serious limitations, one due to the secondary use of data and the subsequent inability to assess methodology in detail, along with vague descriptions of this analysis; whilst the second study due to a lack of reflection on the researcher role in the study, limited context, reasoning for the choice of methods and richness of data. One study was rated as having very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and a link to conclusions. Coherence was rated no or very minor concerns overall. 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 six studies from the UK in a relevant population. Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies in much detail. The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological limitations. Review subfinding 3b: Understanding of prognosis Patients often reported that prognosis was rarely discussed. Some patients were aware of the seriousness of their condition but reported a lack of understanding of the prognosis. Some patients were unaware that heart failure is a terminal condition and reported feeling very frightened when informed at the end-stage. Methodological limitations were rated moderate overall. Three studies were rated moderate limitations due to limitations on the role of the researcher and methodology, as well as limitations in context for one study and data richness and lack of link between findings and conclusions for another study. Two studies had serious limitations: one study due to the secondary use of data and the subsequent inability to assess methodology in detail, along with vague descriptions of this analysis; and the second study due to the lack of reflection on the researcher role in the study, limited context, reasoning for choice of methods and richness of data. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Coherence was rated minor concerns overall. Agreement between papers was very good with the majority demonstrating patients lack of understanding of their prognosis. It was only slightly downgraded to minor concerns overall due to some variability in patients understanding. 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 five studies from the UK in a relevant population. Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies. The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations. Review subfinding 3c: Patients concerns Some patients preferred not to know more about their prognosis, perhaps using denial as a way of coping. Yet most others, including carers, felt they were inadequately informed by healthcare professionals, and felt uncertainty about what would happen as the disease progressed. Thinking about the future was a common preoccupation, with patients expressing very realistic concerns that their life expectancy was limited. (Aldred 2004) 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 methods rigour, and/or data richness in some sections relevant to our review. 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. 