Data was analysed using thematic primary care physicians and 2 nurse practitioners who provided care to one of three long- term care facilities chosen to offer Explore perceptions of HCP regarding HF care in care homes, particularly why these HF pt were less likely to be receiving medication, despite the high burden of Part of programme aiming to develop care processes to manage HF in care homes. Setting: Northern 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 content analysis by two researchers. Findings were presented back to the participants. variety. disease and acute care episodes. Ontario, Canada Qualitative, service evaluation study. Semi- structured interviews with HCP. Data collated and analysed using Framework Method. Initial findings were fed back to the participants. N= 21 HCP involved in the delivery of HF from three trusts with different models of providing HF care: 8 nurses, 6 consultants, 2 senior commissioners & 4 GPs. Understand how HF services are delivered in three different trusts, and especially care interact to provide continuity of care for HF pt in a context of increasing demand and financial pressure. Setting: UK, three settings in Birmingham and the Black Country. Macdonald Secondary analysis of qualitative data of transcripts of interviews with pt. Use form of amplified analysis to fit themes to the Candidacy framework. N=20 CHF pt (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 the concept of Candidacy Compares CHF with cancer. Data was taken from the Colorectal Cancer, End-Stage HF and Stable HF studies. Setting: UK, region not stated MacKenzie Mixed methods service evaluation of a new HF nurse service. Used a questionnaire sent to HCP for gathering quantitative and qualitative data. Free text boxes allowed for responses to four sections. No detail on analysis. of those mailed) and all 3 HF specialist nurses returned questionnaires, although not stated how many added free text. To assess acceptability and effectiveness of a new community based nurse-led HF service in an area with a dispersed population; assess the knowledge and needs of the GPs and assess the perceptions of national guidance. Setting: UK, the Highlands Although in context of the NHS, the new HF nurse posts were funded by a charity. Nordgren Qualitative study from lifeworld perspective. Unstructured interviews with middle-aged pt with CHF(65 and under), with focus on eliciting lived experience of care. Used phenomenological analysis. N= 7 pt currently attending HF clinic aged 65 and under, chosen for richness and variety of experience. Age: range 39-65 Severity: moderate to severe with at least one hospitalisation. Explore how middle- aged people with moderate-severe HF experience and understand formal care. Setting: HF clinic in Sweden Qualitative study nested in a larger project. Semi- structured interviews with N= 33 HCP, including GPs (7), HF nurses and geriatricians (8), Explore views of HCP on managing heart failure pt. Part of bigger project around communication in 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 HCP. Coded according to themes, subsequently explored in relation to the literature, using a variation of the constant comparison method. from ten sites, chosen for variety. HF (unpublished). Setting: UK, in multiple sites in North of England Qualitative, using Complex Adaptive System (CAS) theory. Interviews with pt to identify all other people involved in their care, followed by attempts to interview all in these networks. A constant comparison method to improve interview. Used constructivist grounded theory to build an explanatory theory. N= 50 pt networks, including specialist HF services and at least two of the pts carers. Carers included family/informal care, caring professionals and healthcare professionals from both specialist and general services. Some HCP appeared in more than one pt network). Sampled to enrich applicability to palliative care. Age (pt): Not stated Severity: NYHA III-IV Better understand the behaviour of the teams providing heart failure care to those with advanced HF in order to plan how best palliative care services can integrate into these teams. Setting: Five Canadian cities in three provinces. Abbreviations: Pt = people with chronic heart failure, HCP = healthcare professional 9.3.3.4 Qualitative evidence synthesis 9.3.3.4.1 Narrative review findings The review findings were grouped within five overarching findings, as follows: 4. Contact and Access 5. Role of specialist heart failure services Within most findings there were sub-findings relating to (a) challenges/problems, (b) ideas for improvement, and (c) complex transition issues. The sub-findings are presented, along with an evaluation of the quality, including an explanation for the CerQual grading that appears with each sub-finding in the summary tables in 9.3.3.5. Relevancy was judged with respect to making recommendations on this particular issue for current NHS specialist and general services, taking into account that some evidence came from studies were conducted in other countries (studies from US and outside the OECD were excluded) and before major NHS configuration changes. Review sub-finding 1a: Lack of continuity in HF care Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Both people with heart failure and health professionals felt that heart failure care was fragmented, leading to a lack of continuity. This was contrasted in one study with the more seamless care offered to people with cancer. Patients who experienced lack of continuity found it made it more difficult to form therapeutic relationships, which undermined their confidence in their management plans. Patients aged 65 and under mentioned that lack of continuity sometimes led to encounters with professionals appearing anonymous and meaningless. This sub-finding was based on four studies 126, 144, 207, 225 . Methodological limitations were rated moderate concerns overall. Two papers were rated serious limitations as they were secondary analyses with insufficient information about the original interviews. One paper was rated as moderate limitations due to lack of context and data richness. One paper was rated as minor limitations. 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. The only findings that tend the other way are regarding the positive influence of GPs in continuity, and this is not inconsistent. Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high. Concerns stemmed from two papers being from outside the UK and in a sub-set of CHF, and the data collection in a UK paper dating back to 2010. However, the finding was found in various settings, and likely to generalise well. Adequacy was rated as no or very minor concerns. The sub-finding was general, and although explicitly supported by a limited number of studies, other studies found similar findings. The sub- 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 relevance. Review sub-finding 1b: Primary care People with heart failure and professionals working in heart failure care both recognised that primary care, and general practitioners in particular, could provide individualised care with continuity. It was acknowledged that such continuity is important to patients, and there was concern that where HF services take over a patient, this could cause patients to lose touch with primary care, with a consequent loss of continuity. In one study GPs spoke of how they wished for a consultant model where specialists answered questions and made recommendations, but did not take over care of the patient. In an assessment of a new heart failure service, it was emphasised by GPs that new services should integrate into the existing primary care/community multidisciplinary team, partly for this reason Methodological limitations were rated minor overall. One paper was rated serious limitations due to the lack of explanation of methods and lack of depth of data collection. One paper was rated as moderate limitations due to the participants not being well described. Two papers were rated as minor limitations. Coherence was rated minor concerns overall. Agreement between papers was good, showing that both patients and other health professionals value the continuity provided by GPs, and believe there is danger of that being disrupted. However, there is other data that challenges the primacy of continuity over other important factors in HF care, for instance the in-depth knowledge of the cardiologist, or the easy access to the HF nurse. Relevance was rated minor concerns overall. The relevance of the subfinding to the focus of the review was high. Both studies that included patients were from outside the UK. A third study (of HCP) Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 was from the Highlands of Scotland, which has rather specific challenges of geography that may affect the importance of primary care. The remaining study however, was conducted with HCP in three different trusts, offering results that seem to generalise well over settings. Adequacy was rated as no or very minor concerns. The subfinding was fairly general, was expected, and is supported by numbers of studies. The finding was descriptive and supported adequately by the richness of data. The overall assessment of confidence was moderate, having been downgraded by one increment due to the combined minor concerns about methodology, coherence and relevance. Review sub-finding 1c: Discharge from HF clinic One study that interviewed people discharged from HF clinics to primary care found that they reported having gone from a situation where they received appointments for follow-up, to one where they were no longer called for review. For some, this felt like they were no longer ill enough to qualify for help. When asked, they expressed a wish to be called to see the GP or nurse once in a while. One patient said: I feel a bit left out, I m not part of the health-care system anymore p291 A different study speaking to HF nurses echoed this, saying that they were aware that people liked being patients in the HF clinic, and that this led to some unhappiness when it came to discharging patients. Regarding HF clinics, one says: I see quite a lot of patients who get discharged, and they hate that. They feel safe someone s interested and they re keeping an eye on me They don t like to lose that. They hate to lose that. P301 294 It is notable that the focussed qualitative review on continuity in CG138 found the finding of Feelings of abandonment (when treatment ends or support not available) , which seems to echo in this specific finding on discharge from HF clinic to primary care. This sub-finding was based on 2 studies 14, 294 . Methodological limitations were rated serious overall. Two papers were rated serious limitations the study of patient interviews because of the small number of participants (4), lack of clarity over methods, the researcher s voice is potentially prominent and lack of richness of data; the study of HCP interviews because of limited discussion and reflection on the role of the researcher and their methods. Coherence was rated no or very minor concerns overall. Agreement between papers was good, and while it does not directly align with the sub-finding concerning the primacy of primary care in providing continuity, it fits with the overall theme of this section regarding lack of continuity within the system as a whole. Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was very high. Concern was due to one study being from outside the UK and the interviews being in Swedish. However the UK study of HCP shows that the issue is likely to extend to NHS services. Adequacy was rated as moderate concerns. The sub-finding was specific, and so sufficiently supported by lower numbers of studies. The issues are well described and explained, but overall the richness of the data falls short. The overall assessment of confidence was low, having been downgraded by 2 increments due to methodological limitations, and concerns over adequacy and relevance, while taking into account the support of the external literature. 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 sub-finding 2a: Poor co-ordination between services People with heart failure experience the healthcare system as being poorly co-ordinated. One consequence of poor co-ordination was increased treatment burdens, as they needed to attend hospital/clinics on multiple occasions. They also experienced being given conflicting advice, for example by the cardiologist and nephrologist, leading to uncertainty and loss of confidence. People with heart failure also found the organisation of the healthcare system unclear and confusing. Individuals recalled the difficulties they had experienced trying to get referrals to rehabilitation services and nursing services that they needed. They suggested a clearer organisational process where they could identify who had responsibility, and where things like rehabilitation were offered automatically Methodological limitations were rated moderate overall. Two papers were rated serious limitations: a secondary analysis which did not give enough detail about data collection or context, and an interview study due to a combination of lack of researcher reflection and inadequate richness. Two papers were rated as moderate limitations due to a lack of researcher reflection, inadequate richness and lack of discussion. Two papers were rated as minor limitations. Coherence was rated no or very minor concerns overall. The sub-finding of poor co-ordination is present throughout these six studies, and is implicit in other studies. All positive experiences encountered in this review were of individual teams, and most negative experiences in the studies are between settings although many of these were between inpatient hospital and community, which is outside the scope of this review. Relevance was rated minor concerns overall. The relevance of three studies was reduced as they were from outside the UK, two of the remaining studies are from before 2010, and the date of data collection from the final study is not reported. There could be concerns as to whether this is occurring in today s NHS context; however the breadth of the data, being from multiple countries, multiple settings, and multiple time points, increases its generalisability. Adequacy was rated as no or very minor concerns. The sub-finding was general and supported by numbers of studies. The sub-finding was descriptive and supported by the richness of data. The overall assessment of confidence was moderate, having been downgraded by 1 increment due to concerns over methodology and relevance. Review sub-finding 2b: Models to co-ordinate care Clinicians acknowledged that closer co-operation would improve patient care, and potentially reduce workloads. Different (non-mutually exclusive) suggestions came from within and across papers: Nominating a single professional to co-ordinate care. Heart failure nurses working in a cross-boundary role to encourage close working relationships. Co-working between primary and secondary care, possibly through means of a shared-care agreement . Such protocols were already in place for people who have other long-term conditions such as diabetes and hypertension, and enable general practitioners to manage patients in certain categories, with specialists managing patients presenting with more complexity. Protocols such as for shared-care were seen as having both pros and cons: they can improve transparency and facilitate co-working, but people with heart failure often also have other chronic problems and could end up being on multiple protocols, leading instead to confusion and increased burden of treatment 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 serious overall. Two papers were rated serious limitations: one due to lack of context and richness in our area of interest, the other due to lack of detail and reflection on the methods. Two papers were rated as moderate limitations: one because the aims, methodology and findings were poorly discussed, the other because there was little description of the participants. One paper was rated as minor limitations. Coherence was rated minor concerns overall, based on the finding that clinicians see a problem and think it can be improved. Although there were a number of different improvements suggested, they were compatible with each other. It would be impossible however, to conclude in favour of any particular intervention from these data, and it is clear that there is a tension between disease- specific protocols and holistic management. Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high, as these models may have the potential to improve patient experience at transitions. All but one study was from the UK, and they were in a number of different settings, although some are from before 2010. Adequacy was rated as moderate concerns. The sub-finding was general, and found in a number of studies, but there was inadequate depth (for example, there were no case studies or examples of pathways in action). The overall assessment of confidence was low, having been downgraded by two increments due to concerns regarding methodology, and adequacy along with other minor concerns. Review sub-finding 3a: There is poor communication between services People with heart failure, their informal carers and professionals within and outside HF services all felt that there was poor communication across boundaries, especially between hospital-based services and primary / community care. Inadequate and delayed transfer of information led to burden on patients and waste of resources. In some areas it contributed to lack of / under- treatment, where management plans were not shared with the prescriber. One patient explained how this happened: there were times when there was a bit of a lack of communication, you know. I would go speak to my doctor [GP] and tell him I m on such and such, and he would say I ve not had any word about that . And that s part of the problem; you get a printed prescription that has, for instance, if I was on 4.5mg of Bisoprolol and they [hospital] were putting it up to 7.5, often the liaison between the hospital and the doctors wasn t all that good Methodological limitations were rated serious overall. Three papers were rated serious limitations, including two secondary analyses and one with limited detail and reflection. Three papers were rated moderate limitations, two due to lack of richness and context, and a third due to poorly defined aims and method. Coherence was rated no or very minor concerns overall. Agreement between papers was good, and is supported by many of the other studies in an implicit way. Relevance was rated no or very minor concerns overall. The relevance of the sub-finding to the focus of the review was very high, as communication was flagged as an issue during transitions between care settings. Concern was due to two studies being from outside the UK, and some being more than ten years old but more recent studies report similar findings, suggesting that this issue has not significantly changed over time and probably generalises well. 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 sub-finding is fairly general and descriptive, and was sufficiently supported by the number of studies and the richness of data. The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological limitations. Review sub-finding 3b: Barriers to communication Healthcare professionals identified the following barriers to cross-boundary communication: fragmented and incompatible information systems, and a lack of time. HF nurses describe in one study, for example, how they struggle to speak to GPs when they have concerns about their patients (GPs are in surgery or on house-calls during most of office hours). This sub-finding was based on 2 studies202, 209 . Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of depth and explanations. One paper was rated as moderate limitations due to little description of participants. More data came from the latter, therefore rated as moderate overall. Coherence was rated no or very minor concerns overall. Agreement between papers was good. Agreement with related findings in other studies was also good. Relevance was rated no or very minor concerns overall. The relevance of the sub-finding to the subject of the review was high. Both studies were from different areas of the UK. Adequacy was rated as serious concerns. There is some concern about both the lack of quantity of data for a finding of generality, and a lack of depth for an explanatory finding. The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and adequacy. Review sub-finding 3c: Information after discharge from HF services Patients reported being well informed while they were in the HF clinic, but received no information after discharge to primary care. Patients interpreted this change in an ambivalent way, as if not confident in the continuing significance of their CHF and whether they needed ongoing care for their CHF. This sub-finding was based on 1 study14 . Methodological limitations were rated serious overall. The included paper was rated serious due to small number of participants (4), poor explanation of methods and low richness of data, in which the researchers voice was quite prominent. Coherence was rated no or very minor concerns overall. This specific finding could not be properly assessed, as there was no related data for comparison. Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was very high. Concern was due to the study being from outside the UK, and the interviews being in Swedish. It is not clear to what extent the same problems occur in the NHS, but given the similarly pattern of HF clinic discharge, there is potential for the same issue to arise. Adequacy was rated as serious concerns; it was limited by the number of participants and lack of depth. The overall assessment of confidence was very low. The overlap between the rating of methodology and adequacy rating was taken into account when downgrading, but it was still felt necessary to downgrade by three increments due to the serious concerns raised. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 4. Contact / Access Review sub-finding 4a: Access to Routine Care People with heart failure who were not receiving specialist treatment reported that it was challenging to access specialist advice or secondary care, and that they have to spend time trying to access these through their general practitioner. Once receiving specialist care, or after discharge, patients reported that continued access to the support they felt they needed was also not straight- forward. Some patients felt that the illness itself made asking for help harder. One patient reports If you have a heart issue you have to shout and speak for yourself and keep at somebody And if you re not feeling well that s not what you want to be doing .207 p 108 This is contrasted with patients who have cancer, who found their condition was a door-opener , so they did not have to assert their needs in the same way. The inconsistent way care is offered is to people with CHF was also demonstrated by the impression from HF nurses that GPs have differing thresholds to refer back for specialist help, such that some GPs can leave people struggling in the community. This sub-finding was based on 3 studies126#2749, 207 . Methodological limitations were rated serious overall. Two papers were rated serious limitations as they were secondary analysis with a lack of information about how the data had originally been collected. One paper was rated as moderate limitations due to lack of description of participants. Coherence was rated no or very minor concerns overall. Agreement between papers was good. Agreement with general, related findings in other studies was also good. Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high, as movements in and out of HF specialist care are essentially about accessing routine care. Concern was due to two studies being from prior to 2010. Adequacy was rated as minor concerns. This sub-finding was fairly general, and so the number of studies was a little lower than would be preferable to support it, but there were no concerns about the richness of data. The overall assessment of confidence was low, having been downgraded by two increments due mainly to methodological concerns plus the minor concerns regarding relevance and adequacy. Review sub-finding 4b: A Primary Contact Person People with heart failure felt they would like one professional nominated as their primary contact person. The preferred characteristics of the relationship with their primary contact person were a long-term relationship, characterized by openness, trust, and appreciation p1400 29 . Most would choose their GP as primary contact person, but some felt their cardiologist was more suitable. A key role of the primary contact would be to enable easy access for patients to care, for example timely appointments. This finding is related to finding 2b, where professionals suggested a single person co- ordinating care might improve co-operation. This sub-finding was based on 1 study 29 . Methodological limitations were rated moderate overall as the included paper was limited in detail and reflection. Coherence was rated no or very minor concerns overall as it compliments some of the other related review findings. Relevance was rated serious concerns overall as the study was not from the UK, was originally in German, and had a restrictive definition of heart failure (EF<40%). 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 moderate concerns; although the sub-finding was only reported in one paper, it is well explored in that paper. The overall assessment of confidence was low, having been downgraded by 2 increments due to relevance concerns, and also for methodology and adequacy. Review sub-finding 4c: Access to Urgent Care Patients found that the HF clinic provided them easy access to physicians and nurses, and healthcare professionals noted that HF nurses were able to react more quickly to sudden changes in health status than cardiologists or GPs. This leads to a discrepancy in access between those who were active on the HF clinic caseload, and those discharged to primary care. It was clear that although access to specialists was valued, consistency of care was also needed, and the two were sometimes in tension. For example in one study, a specialist nurse explained: patients can ring us up at any time and we can see them on that day if we need to. There is no waiting around and ringing your GP , but GPs in that study felt patients needed a more holistic approach than the HF clinic offered because all they care about is the heart failure. pp300, 303 294 People with advanced heart failure and their carers reported uncertainty about where to seek help. One patient reported: I rang my GP who said to ring the hospital, rang hospital and was told they couldn t do anything, you have to ring GP! p120 8 This sub-finding was based on 3 studies225, 294#2771 . Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of discussion and reflection. One paper was rated as moderate limitations due to lack of discussion and reflection on methods. One paper was rated as minor limitations. Coherence was rated no or very minor concerns overall. Agreement between papers was good, although they revealed another instance of tension between the objectives of ease of access to specialists and continuity of care. Relevance was rated moderate concerns overall. The relevance of the sub-finding to the focus of the review was high. One patient interview study was not in the UK, and was originally in Swedish. The UK studies are both from before 2010, and the finding is likely to be sensitive to changes in service design. Adequacy was rated as moderate concerns. This sub-finding was adequately supported by a number of studies, but was lacking in depth. The overall assessment of confidence was low, having been downgraded by two increments due to combined concerns regarding methodology, relevance and adequacy. 5. The role of specialist HF services Review sub-finding 5a: Expectations The expectations of specialist HF services from people with CHF and primary care providers were seen to differ from what the service is delivering. What people providing HF specialist services think patients and primary care want is different again. For example: People with heart failure value the time the HF nurse has to spend with them, and the psychosocial support they provide; GPs however said they wanted HF nurses to be a resource for primary care, for advice and a point of contact with cardiology; but HF nurses felt a pressure from GPs to fill a gap in service provision. As one HF nurse states: GPs will try to pass the buck because heart failure patients are a problem because they re not stabilised So they get a patient they even suspect has got heart failure, they ll move heaven and earth to get them Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 through your clinic because they know you ll sort them out, give them everything they need, sort all their echoes , all their blood tests, all go back as a lovely little package. p301294 Healthcare professionals involved in HF services perceived GPs as wanting patients to be taken on (or not discharged) by the HF clinic. In one of the studies, those same GPs were also heard, and on the contrary expressed willingness to manage the CHF for most of their CHF patients, suggesting that the HF clinic could concentrate on the most complex cases. One GP stated: Now that we have open access echo available [to primary care), I am much more comfortable about being the person who makes the decision, the diagnosis, and who initiates and monitors . Methodological limitations were rated serious overall. Two papers were rated serious limitations due to having limited discussion and reflection, and in one case a lack of richness of data in our area of interest. One paper was rated as moderate limitations as there is little description of the participants. Coherence was rated minor concerns overall. This was one of the least well-defined sub-findings in the review what was clear is that different groups had certain expectations on services, but the exact nature of the expectations differed between the studies, and few studies were able to look at the difference in expectations between different groups. The finding of conflict between interested groups due to differing expectations was clear in the two service evaluations included here (which, of the study types in the review, were the studies best able to look at this issue). Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was somewhat indirect. The issues identified may seem quite specific to the exact model of delivering HF care, but all studies were in the UK, at different time periods, so there may be a generalisable point. Adequacy was rated as serious concerns. The sub-finding was a complex issue, not explored in depth. The overall assessment of confidence was very low, having been downgraded by three increments for methodology, relevance and adequacy concerns. Review sub-finding 5b: Focus Healthcare professionals felt that HF services should be focussed on managing CHF rather than its comorbidities. HCP from HF services felt that they did not have the ability to assess and treat some comorbidities (an example condition was iron-deficiency anaemia). They also felt that addressing people s primary care issues could: take patients out of contact with primary care, potentially causing a loss of continuity; and leave HF services without capacity to manage HF care across their caseload. This sub-finding was based on 2 studies127, 325 . Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of information on methods and data analysis, and not all findings being supported by data. One paper was rated as minor limitations. Coherence was rated no or very minor concerns overall. Agreement between papers was good. The sub-finding was compatible with other sub-findings in the review. Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was somewhat indirect. There was also some concern due to both studies being from outside the UK. Adequacy was rated as moderate concerns. The sub-finding was specific and supported by a number of studies, but is more than just descriptive, so would benefit from a greater 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 The overall assessment of confidence was low, having been downgraded by two increments due to adequacy foremost, and also methodology and relevance. Review sub-finding 5c: Decision to keep patients on the caseload One study looked at care networks of patients with advanced heart failure. It found that specialists describe their decision to take over someone s care in the HF clinic as being based on patient need (primarily from the CHF perspective) and the perceived ability of the general practitioner to fulfil these needs. The paper shows though, that actual practice varied widely, and the research team reflect that: complexity [of the patient] interacted with the health care providers perspective, comfort level and available resources to influence referral and consultation practice p372 325 Another study also reflected this, where some HF professionals acknowledged the GPs importance in ensuring continuity of care, but took over care despite of this because they doubted the ability of the GPs to manage heart failure. This sub-finding was based on 2 studies202, 325 . Methodological limitations were rated minor overall. One paper was rated as moderate limitations, and one as minor limitations with the latter contributing more to this sub-finding. Coherence was rated no or very minor concerns overall. It fits with other sub-findings, in that the decision about where CHF patients are best managed has a number of objectives, which can conflict. Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was high from a staff experience point of view. Concern was due to one study being from outside the UK, however, the second (UK-based) study was conducted in a number of locations, which supports this being a relevant and generalisable theme. Adequacy was rated as moderate concerns. The finding was specific, but there were still an inadequate numbers of studies. This sub-finding was both descriptive and explanatory, and there was plenty of detail in the papers. One specific concern was that part of the aim of the main study in this analysis was a partly theoretical piece, designed to look at the complexity that exists in healthcare; so the finding of complexity was partially by design. The overall assessment of confidence was low, having been downgraded by two increments due primarily to concerns over relevance and secondly methodology and adequacy. Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Figure 7: Main review findings and connections between them Clear communication Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 9.3.3.5 Qualitative evidence summary Table 132: Summary of Evidence for Continuity Study design and sample size Findings Quality assessment No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence 1a Lack of Continuity in HF Care Focus groups of HCP in care homes Interview of pt aged 65 and under Secondary analysis of pt interviews Both people with heart failure and health professionals felt that heart failure care was fragmented leading to a lack of continuity, with negative consequences for patient experience. Methodology moderate limitations MODERATE Coherence no or very minor concerns Relevance minor concerns Adequacy no or very minor concerns 1b Primary Care Interview of pt aged 65 and under Interviews of HCP Interviews of patient and care network Questionnaire to HCP People with heart failure and professionals working in heart failure care both identified that primary care, and general practitioners in particular, could provide individualised care with continuity. HF services can cause pt to lose touch with primary care and lose this continuity. Methodology minor limitations MODERATE Coherence minor concerns Relevance minor concerns Adequacy no or very minor concerns 1c Discharge from HF Clinic Interviews with pt Interviews with HCP People with heart failure and HF nurses both spoke of discharge from HF clinic as being a loss to the patient in terms of no longer being proactively followed up. Methodology serious limitations LOW Coherence no or very minor concerns Relevance minor concerns Adequacy moderate concerns Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Table 133: Summary of Co-ordination Study design and sample size Findings Quality assessment No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence 2a Poor Co-ordination Between Services 2 x interviews of pt with advanced CHF and their care network with pt (inc. 1 with their carer) Secondary analysis of interviews of pt People with heart failure experience the healthcare system as being poorly co-ordinated, leading to increased burdens on them and to them being given conflicting advice. This in turn resulted in uncertainty and loss of confidence. Methodology moderate limitations MODERATE Coherence no or very minor concerns Relevance minor concerns Adequacy no or very minor concerns 2b Models to co-ordinate care 2 x interviews of mix of HCP 2 x interviews of HCP in HF services Interviews of pt and their care networks Health professionals were aware of several models that could be used to better co-ordinate care. Suggestions included: having a single professional to co-ordinate care; using heart failure nurses to facilitate cross-boundary working; and having conjoint working between primary and secondary care via means of a shared-care agreement . Methodology serious limitations LOW Coherence minor concerns Relevance minor concerns Adequacy moderate concerns Table 134: Summary of Evidence for Communication Study design and sample size Findings Quality assessment Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence 3a Poor communication between services Focus group with HCP in care homes Interviews with pt with advanced CHF and their care network Interviews with pt 2 x secondary analysis of interviews with pt Interviews with HCP People with heart failure, their informal carers and professionals within and outside HF services all felt that there was poor communication across boundaries, and this affected patient experience and patient care. Methodology serious limitations MODERATE Coherence no or very minor concerns Relevance no or very minor concerns Adequacy no or very minor concerns 3b Barriers to clear communication Interviews of HCP in HF care Questionnaire to HCP Healthcare professionals felt that some barriers to cross-boundary communication were fragmented and incompatible information systems, and difficulties trying to speak to other health professionals. Methodology moderate limitations LOW Coherence no or very minor concerns Relevance no or very minor concerns Adequacy serious concerns 3c Information after discharge from HF services Interviews with pt People with heart failure experience being well-informed in HF clinic, but receiving no information after being discharged to primary care, which some took to mean they no longer needed care for their heart failure. Methodology serious limitations VERY LOW Coherence no or very minor concerns Relevance minor concerns Adequacy serious concerns Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Table 135: Summary of Evidence for Contact / Access Study design and sample size Findings Quality assessment No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence 4a Access to Routine Care 2 x secondary analysis of pt interviews Interview of HCP Whether wanting continued access, a new referral or a re-referral, people with heart failure found that it took them time and effort, and that the illness itself could make it harder to stand up for themselves. Methodology serious limitations LOW Coherence no or very minor concerns Relevance minor concerns Adequacy minor concerns 4b A Primary Contact Person Interviews with pt People with heart failure expressed a preference for a primary contact person who offered a long-term relationship, openness, trust and appreciation most would choose their GP a key role of whom would be to provide easy access to care, e.g. timely appointments. Methodology moderate limitations VERY LOW Coherence no or very minor concerns Relevance serious concerns Adequacy moderate concerns 4c Access to Urgent Care Interviews with pt 65 and under Interviews with pt 60 and over and carer Interviews with HCP For people with heart failure that were under the care of HF clinics and nurses, it was noted that they had easy access to specialist doctors and nurses, who were able to react more quickly than in conventional service models, but could not provide continuity. Methodology moderate limitations LOW Coherence no or very minor concerns Relevance moderate concerns Adequacy moderate concerns Table 136: Summary of Evidence for Role of Specialist HF Services Study design and sample size Findings Quality assessment No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence Referral and approach to care Chronic Heart Failure NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: Study design and sample size Findings Quality assessment No of studies contributing to the finding Design Criteria Rating Overall assessment of confidence Interviews with HCP Interviews with HCP in HF services Interviews with pt with severe CHF and their care network Expectations of HF services from primary care and pt can differ both from what HF services think primary care and pt want, and from what the service is capable of delivering. Methodology serious limitations VERY LOW Coherence minor concerns Relevance moderate concerns Adequacy serious concerns Interviews with HCP from HF services Interviews with severe CHF and their carer network Healthcare professionals felt that HF services should be focussed on heart failure rather than its comorbidities, as addressing people s primary care issues has other consequences. Methodology moderate limitations LOW Coherence no or very minor concerns Relevance moderate concerns Adequacy moderate concerns 5c Decision to keep patients on the caseload Interviews with pt and care network Healthcare professionals involved in HF specialist services vary widely on whether they take over patients, basing their decisions on the balance of a person s needs for HF care and resources, e.g. the perceived ability of their general practitioner. Methodology minor limitations LOW Coherence no or very minor concerns Relevance moderate concerns Adequacy moderate concerns Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.3.4 Economic evidence Published literature No relevant economic evaluations were identified. See also the economic article selection flow chart in Appendix D. 9.3.5 Evidence statements Qualitative See the narrative summaries of review findings in section 1.3.3.1. Economic No relevant economic evaluations were identified. 9.3.6 Recommendations and link to evidence Recommendations 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 specailist heart failure care 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 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] Care after an acute event For recommendations on the diagnosis and management of acute heart failure see NICE s guideline on acute heart failure. The primary care team should take over routine management of heart failure as soon as it has been stabilised and its management optimised. Writing a care plan 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] 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 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 o a named healthcare coordinator (usually a specialist heart failure nurse) o local heart failure specialist care providers, for urgent care or review. additional sources of information for people with heart failure. 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] Findings identified in the evidence synthesis The review findings were grouped into findings and subfindings following the structure of the recommendations on continuity of care from the NICE Guideline CG138 Patient experience in adult NHS services in which four aspects of continuity of care were identified: continuity, co-ordination, communication and contact/access to health professionals and services. In addition the role of specialist services was identified as an important aspect of continuity of care for people with heart failure. For each of the five subfindings of continuity, the review identified challenges, as well as suggestions for improvement, and examples of how transition in heart failure care in particular could affect patients and patient care. The guidelines Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes [NG5] 2015 and Multimorbidity: clinical assessment and management [NG56] 2016 were also identified as covering similar findings on the management of transition and continuity of patient care. Continuity: It was found that heart failure care that is spread across different healthcare settings is fragmented, and this can have a negative effect on peoples confidence in their management plans. The evidence showed that primary healthcare services, and especially general practitioners, were good at providing continuity of care and individualised, holistic care. It suggested that specialist services should, attempt to integrate into existing primary care structures. Evidence showed that discharge from HF specialist services to general practice can be seen as a loss by patients. The reasons for this were thought to be multifactorial and concerned the difference between specialist and GP care. These included a real or perceived reduction in the focus on the condition, a reduced awareness of the intricacies of the condition, and unfamiliarity with the history of the condition and its exacerbations. In addition to this there may be an increase in the person with HF s sense of vulnerability at being away from specialist care or his/her access to specialist care. 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. 