No meta-analysis was conducted due to the heterogeneous nature of the interventions and populations in the included studies. The studies were grouped into strata based on the population risk level (high, low) and the length of the intervention (long, mid, short), and were also categorised into one of four intervention types (home-based MDT, MDT clinic, nurse-led or pharmacist-led clinic, or case management). High risk Short Home-based MDT No studies were identified in this category. MDT clinic This category included two studies with high risk populations exposed to a short MDT clinic intervention. For the outcome of all-cause hospitalisations, the evidence was inconsistent, with one study (n=98) suggesting a clinically important reduction and the other (n=112) suggesting a clinically important increase (moderate to low quality evidence). The evidence from both studies did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all- cause mortality.One of the studies (n=112) showed a clinically important increase in prescribing of ACE inhibitors and beta-blockers (high to moderate quality evidence). Nurse-led or pharmacist-led clinic No studies were identified in this category. Case-management No studies were identified in this category. High risk, Mid-length Home-based MDT This category included one study (n=72) with a high risk population exposed to a mid-length home- based MDT intervention. The evidence showed a clinically important reduction in hospitalisations (high quality evidence) and a clinically important improvement in quality of life (very low quality evidence). Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. MDT clinic This category included three studies with high risk populations exposed to mid-length MDT clinic interventions.


MDT clinic This category included three studies with high risk populations exposed to mid-length MDT clinic interventions. The evidence on hospitalisations was low to very low quality and inconsistent, with two studies (n=7117 and n=230) suggesting a clinically important reduction, and the third study (n=200) suggesting no clinical difference. Evidence on mortality was also low to very low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 in all-cause mortality The third study also provided evidence on quality of life and heart failure medication prescribing and adherence. Very low quality evidence suggested no clinically important difference in quality of life. The evidence on medications was moderate to very low quality and inconsistent, with evidence of a clinically important decrease in prescription of beta-blockers, but no clinical difference in prescribing of ACE inhibitors or taking prescribed medication. Most of the evidence had very wide confidence intervals around the effect estimates. Nurse-led or pharmacist-led clinic This category included 2 studies (n=25 and n=158) with high risk populations exposed to a mid-length nurse-led clinic intervention. For the outcome of hospitalisations, low to very low quality evidence suggested a clinically important reduction. Very low quality evidence suggested mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all- cause mortality The smaller study provided low quality evidence for quality of life which suggested no clinically important difference. Very low quality evidence from the same study also suggested a clinically important increase in prescribing of optimal beta-blocker doses. Evidence on all of the outcomes except for beta-blocker prescribing had very wide confidence intervals around the effect estimates.


Evidence on all of the outcomes except for beta-blocker prescribing had very wide confidence intervals around the effect estimates. The larger study provided low quality evidence for NYHA class change and prescribing of ACE-inhibitors which showed no clinical difference in the former and a clinical benefit for the latter. Case management This category included one study (n=161) with a high risk population exposed to a mid-length case management intervention. Very low quality evidence showed a clinically important decrease in hospitalisations. Very low quality evidence on mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality Low to very low quality evidence on quality of life suggested no clinically important difference. High risk, Long Home-based MDT This category included one study (n=683) with a high risk population exposed to a long home- based MDT intervention. Low quality evidence suggested a clinically important increase in hospitalisations . Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. MDT clinic This category included five studies (n=338, n=173, n=240, n=234, n=197) with high risk populations exposed to a long MDT clinic intervention. Moderate to very low quality evidence from the five studies consistently showed a clinically important reduction in hospitalisations or days in hospital. High to very low quality evidence from four of the studies also suggested a clinically important reduction in mortality or cardiac mortality in two studies,no clear effect in two studies and the fifth study suggested a clinically important increase. Low to very low quality evidence on quality of life reported in three of the studies (n=220, n=210, n=197) suggested a clinically important benefit.


Low to very low quality evidence on quality of life reported in three of the studies (n=220, n=210, n=197) suggested a clinically important benefit. Moderate to low quality evidence on prescribing of beta-blockers from two studies (n=153, n=210) suggested a clinically important benefit. Evidence on ACE inhibitor prescribing was inconsistent, with two studies (n=210, n=154, moderate to low quality) suggesting a clinically important benefit and a third (n=153, low quality) suggesting no clinical difference. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Nurse-led or pharmacist-led clinic This category included two studies (n=679 and n=208) with high risk populations exposed to a long nurse-led clinic intervention. Evidence for hospitalisations was of moderate to low quality and showed no clinical difference in the former study but a clinical benefit for the latter. The evidence for mortality was of low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. One study (n=208) also reported quality of life and medication prescription. The evidence for quality of life was of low quality and showed no clinical difference. Evidence for prescribed ACE-inhibitors and beta-blockers were of low to very low quality and showed a clinically important reduction for both outcomes. Case management One study (n=186) with a high risk population undergoing a long case-management programme was included in this category. Low to very low quality evidence suggested a clinically important reduction in hospitalisations, deaths and prescription of beta-blockers. Moderate quality evidence suggested no difference in the prescription of ACE-inhibitors or ARB. Quality of life was not reported. Low risk, Short No studies were identified in these categories. Low risk, Mid-length No studies were identified in these categories.


Low risk, Mid-length No studies were identified in these categories. Low risk, Long Home-based MDT No studies were identified in this category. MDT clinic One study (n=920) offering an extended follow-up in an MDT clinic for low risk stable HFREF patients was included in this category. High quality evidence showed a clinically important reduction in admissions. Low quality evidence for mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. The evidence for the remaining outcomes quality of life, prescribed ACE-inhibitors, prescribed beta-blockers, and three adverse events (serum creatinine increase, hyperkalaemia and hypotension) all showed no clinical difference and were of moderate to very low quality. Nurse-led clinic This category included one study (n=160) with a long nurse-led clinic for low risk HFREF patients. Low to very low quality evidence showed a clinically important reduction in the number of admissions. Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality .Low quality evidence also showed a clinically important increase in prescribed ACE-inhibitors or ARB. No difference was found for the outcomes of prescribed beta- blockers and renal function serum creatinine, which were of moderate to low quality. Quality of life was not reported. Pharmacist-led clinic Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 One study (n=83) with a long, pharmacist-led clinic for a low risk HF population was included in this category. The evidence for admissions was of very low quality and showed a clinical reduction for both.


The evidence for admissions was of very low quality and showed a clinical reduction for both. Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality .Very low quality evidence for quality of life also showed a clinical benefit for the intervention. Self-reported taking of prescribed medication showed no clinical difference and was of low quality. An automated measure of taking prescribed medication, however, showed a clinically important increase; the evidence of which was of very low quality. Case management Two studies with a long, non-specialist case management approach for a low risk HF population were included in this category (n=149 and n=190). The evidence for mortality was of very low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. One study (n=149) reported two medication outcomes: prescribed ACE- inhibitors at target dose and prescribed beta-blocker at target dose, both of which were of very low quality. The former outcome showed clinical harm for case management while the latter showed no difference. The second study (n=190) also reported a few other outcomes such as hospitalisations, which was of very low quality showing clinical harm for case management. This study also reported quality of life using the Kansas City Cardiomyopathy Questionnaire (very low quality showing clinical benefit for case management) and the SF-36 mental and physical components (low quality evidence demonstrating no difference for both). This study also reported prescribed double therapy of ACE- I/ARB and B-blocker which was of low quality evidence showing no difference between the interventions. Economic One cost-utility analysis found that mid-length intervention MDT clinic dominates (more effective and less costly) usual care in people with heart failure who are high risk.


Economic One cost-utility analysis found that mid-length intervention MDT clinic dominates (more effective and less costly) usual care in people with heart failure who are high risk. This was assessed as partially applicable with potentially serious limitations. One cost-consequence analysis found that a long intervention MDT clinic was less costly with mixed effects on health outcomes (hospitalisations: RR 0.67, mortality: RR 1.80, quality of life (MLWHFQ) MD 6.60 lower, prescribed ACEi: RR 0.97, prescribed BB: RR 1.62) compared to usual care in people with heart failure that are high risk. This was assessed as partially applicable with potentially serious limitations. One cost-effectiveness analysis found that a long intervention MDT clinic was less costly and more effective (saves 4,042 per death and/or heart failure-related admission avoided; saves 2,155 per all-cause admission avoided) compared to usual care in people with heart failure that are high risk. This was assessed as partially applicable with potentially serious limitations. One economic evaluation found that a long intervention, basic MDT dominates (more effective and less costly) both usual care and a long intervention, intensive MDT in people with heart failure who are high risk. This was assessed as partially applicable with potentially serious limitations. One economic evaluation found that a long intervention, case-management MDT is cost effective (ICER: 3,072 per QALY gained) compared to usual care. This was assessed as partially applicable with potentially serious limitations. 9.2.6 Recommendations and link to evidence Recommendations The core specialist heart failure multidisciplinary team (MDT) should work in collaboration with the primary care team, and should include: a lead physician with a subspecialty interest in heart failure (usually Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights.


9.2.6 Recommendations and link to evidence Recommendations The core specialist heart failure multidisciplinary team (MDT) should work in collaboration with the primary care team, and should include: a lead physician with a subspecialty interest in heart failure (usually Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 a consultant cardiologist) who is responsible for making the clinical diagnosis a specialist heart failure nurse a healthcare professional with expertise in specialist prescribing for heart failure. [2018] The specialist heart failure MDT should directly involve, or refer people to, other services, including rehabilitation services, and tertiary and palliative care, as needed. [2018] The specialist heart failure MDT should: diagnose heart failure give information to people newly diagnosed with heart failure (see manage newly diagnosed, recently decompensated or advanced heart failure (NYHA [New York Heart Association] class III to IV) optimise treatment start new medicines that need specialist supervision continue to manage heart failure after an interventional procedure such as implantation of a cardioverter defibrillator or cardiac resynchronisation device manage heart failure that is not responding to treatment. [2018] Relative values of different outcomes The critical outcomes were identified as all-cause hospitalisations, mortality and quality of life. Important outcomes included medicine optimisation (including the proportion of people prescribed medication and the proportion taking the medication as prescribed). Also important were outcomes felt by the committee to indicate potential adverse events from over-treatment: renal failure, hyperkalaemia and hypotension. Patient and carer preferences, and dying in preferred place of death for palliative care patients, were also considered important, but these outcomes were not reported by any study. Quality of the clinical evidence Twenty two studies (23 comparisons) were identified.


Quality of the clinical evidence Twenty two studies (23 comparisons) were identified. The studies were stratified into 2 categories of heart failure risk (high risk and low risk) and 3 lengths of intervention duration (3 months or less, between 3 and 6 months and over 6 months). The population risk (high versus low) was based on the existing recommendations for people who may benefit more from an MDT. The included those with a new diagnosis; requiring medication titration and/or surgical procedure; recent deterioration and severe and/or unresponsive disease. In the current review 14 of the 17 studies in the high risk category selected patients on the basis of recent deterioration, with only 1 selecting new patients, 1 specifically targeting patients requiring medication titration, and 1 selecting on the basis of severe HF with a need for palliation. Population risk in the studies was also described by the average number of all-cause hospital admissions per person per year in the control arms, where this could be calculated. There were only 3 studies that were 3 months or less; and all studies included in the low risk category were over 6 months long. The studies had a heterogeneous mix of populations, interventions and standards of usual care. The studies also ranged in scale from 25 participants followed for 6 months to 920 participants followed for an average of 4 years. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Due to the heterogeneity, meta-analysis of the studies was not considered appropriate. The quality was variable, with the main reasons for downgrading due to risk of bias being a lack of detail about randomisation/allocation concealment and imprecision due to small study size.


The quality was variable, with the main reasons for downgrading due to risk of bias being a lack of detail about randomisation/allocation concealment and imprecision due to small study size. Many of the studies had small numbers of patients or events, with large confidence intervals around the effect estimates ranging from a clinically important harm to a clinically important benefit. Quality of life was downgraded for performance bias in all studies, as it was not possible to blind participants. There was also concern that some larger studies stated intent to measure quality of life in the study protocol, but with limited or no results presented, suggesting selective reporting. The committee considered that overall, the evidence was of low quality, often imprecise, and noted that even the direction of effect was inconsistent between outcomes and between studies. The numbers of hospitalisation and deaths in many of the studies was less than might be expected, and that this may represent selection bias towards healthier patients in these trials. Therefore, there may be problems generalising the evidence to the current heart failure population in the UK. In addition, many of the studies were over twenty years old, and most not in the context of current NHS practice, further restricting their applicability. The committee considered whether further research in this area would improve recommendations in this area. While the current evaluation is hampered by heterogeneous small trials, there were some larger trials such as COACH and NorthStar, which have given some moderate and high quality findings. It was not felt to be worthwhile to prioritise research that aimed to add to or improve on these at the current time.


It was not felt to be worthwhile to prioritise research that aimed to add to or improve on these at the current time. Trade-off between clinical benefits and harms There was substantial heterogeneity in the study designs, patient populations, types of intervention and lengths of follow-up, and the evidence was of poor quality for many of the outcomes. Because of this, the committee generally found it challenging to identify which MDT interventions and team compositions were likely to be of the greatest benefit, and for whom. In patients in the high risk categories identified in the last guideline, there was some evidence that the involvement of the MDT may lead to the prescription of more appropriate medication, decrease number of hospitalisations and improve quality of life. It was discussed that in high risk patients, while most interventions did decrease hospitalisations, there were increased deaths in some of these studies. The possibility was raised that the avoidance of hospitalisation could have increased the risk of mortality, but as the evidence on mortality was very imprecise and based on small numbers, it was felt this was likely to be a chance finding. There seemed to be evidence of a general effect of extra hours of contact being associated with improved outcomes in high risk patients, with some Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 caveats. First, there seems to be a ceiling effect: although some shorter interventions delivered improvement, extended follow-up (over years) in a clinic offered little benefit; and delivering 40 hours of contact gave only the same benefit of 20 hours of contact.


First, there seems to be a ceiling effect: although some shorter interventions delivered improvement, extended follow-up (over years) in a clinic offered little benefit; and delivering 40 hours of contact gave only the same benefit of 20 hours of contact. Secondly, expertise appeared to count, as contact with a primary care nurse delivering a heart-failure intervention without specialist expertise in heart failure had no benefit. The committee agreed that the overall evidence supported the general approach that the MDT be used to stabilise and optimise patients. There was no convincing evidence for substantial changes to the previous recommendation regarding which patients should be cared for by the specialist multidisciplinary heart failure team, though the committee agreed by consensus on some clarifications to the previous recommendation text. These included a referral to the MDT should be considered when there was a need to optimise medication or consider specialist options in medication, and implantation of device therapy. The committee discussed specifying the competencies that should be present in the specialist multidisciplinary heart failure team. Clearly, a lead physician with specialist expertise in heart failure was critical, and this will usually be a consultant cardiologist, but there may be areas where other consultants would also be suitable, such as a consultant in elderly care, . The committee noted that the main professionals involved in delivering or co- ordinating interventions in the included studies were cardiovascular or heart failure specialist nurses. Based on this evidence, the committee agreed that a nursing element was needed, and emphasised that a specialist heart failure nursing competency was necessary; as the evidence suggested that it was not possible to get the same clinical improvements from generalist nurses.


Based on this evidence, the committee agreed that a nursing element was needed, and emphasised that a specialist heart failure nursing competency was necessary; as the evidence suggested that it was not possible to get the same clinical improvements from generalist nurses. There was also evidence that the presence of prescribing expertise (whether by a nurse prescriber or pharmacist) can improve the prescription of some medications, and the committee agreed that the MDT should also include specific prescribing expertise. The committee also noted that there was evidence that involvement of the patient s primary care team was shown to be beneficial, and this was in accordance with the negative experiences of some of the committee members when primary care was not involved in the management plans. It was felt that the multidisciplinary specialist HF team members provide input to the management of patients with heart failure defined above in collaboration with their primary care team. In this way, the primary care team can help facilitate communication and collaboration between healthcare professionals wherever the patient s care is being delivered across different settings. This may include a GP who has completed a course for special interest registration Trade-off between net clinical effects and costs Five relevant economic evaluations were included in this review which compared an MDT to usual care. All of these studies were assessed as partially applicable with potentially serious or very serious limitations. One economic evaluation assessed high risk patients receiving a mid-length (3-6 month) home-based MDT clinic including a cardiologist, heart failure nurse, palliative care physician, palliative care nurse, physiotherapist 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 occupational therapist. This was based on the PREFER trial by Brannstrom et al.


This was based on the PREFER trial by Brannstrom et al. 2014 included in the clinical review. This within-trial cost-utility analysis found that this multidisciplinary approach is more effective and less costly, and therefore dominated (more effective, less costly) usual care. This study suggests that an MDT is likely to be cost saving compared to usual care. The remaining 4 economic evaluations assessed high risk patients receiving long term (greater than 6 months) MDT interventions. All of these economic evaluations were within-trial analyses based on RCTs included in the clinical review. One economic evaluation compared a basic MDT, an intensive MDT and usual care. Both MDT approaches involved a cardiologist and a specialist heart failure nurse. The basic MDT consisted of 20 hours of contact time, whereas the intensive MDT consisted of 40 hours contact time. This within- trial cost-utility analysis was based on the COACH trial by Jaarsma et al. 2008 included in the clinical review. The analysis found that the basic MDT intervention dominated (more effective, less costly) both the intensive MDT intervention and usual care. This paper also undertook sub-group analyses for patients with severe (NYHA class III/IV) and less severe (NYHA class I/II) heart failure. For patients with less severe HF again the basic MDT dominated both the intensive MDT and usual care. However, for patients with severe heart failure neither the basic or intensive MDT interventions were cost effective at 20,000 per QALY threshold compared to usual care (Intensive MDT ICER: 44,625). The committee discussed that those with severe heart failure are likely to be having much more input from specialists, similar to an MDT, when receiving usual care and therefore were not surprised that a formal MDT was not cost effective in this group of patients.


The committee discussed that those with severe heart failure are likely to be having much more input from specialists, similar to an MDT, when receiving usual care and therefore were not surprised that a formal MDT was not cost effective in this group of patients. One economic evaluation compared MDT involving a cardiologist and a specialist heart failure nurse compared to usual care. This was based on a RCT by Berger 201034 included in the clinical review. This cost-utility analysis found that the MDT was cost effective compared to usual care (ICER: 3,072 per QALY gained). This study also reported a third intervention consisting of NT-proBNP guided management in addition to multidisciplinary care. When this comparator is included in the analysis it dominates both MDT alone and usual care. One economic evaluation compared MDT involving a cardiologist experienced in geriatrics, specialist heart failure nurses, and a primary care physician to usual care. This was based on a RCT by Del Sindaco et al. 2007 included in the clinical review. This within-trial cost-effectiveness analysis found that the MDT approach saves 4,042 per death and/or heart failure- related admission avoided, and saves 2,155 per all-cause admission avoided. One economic evaluation compared MDT involving a cardiologist, specialist cardiac nurse and primary care physician to usual care. This was based on the PRICE RCT by Atienza 2004 included in the clinical review which also reported intervention costs. This study found that the MDT approach was less costly than usual care; however, the overall effects of the MDT were uncertain. The outcomes extracted in the clinical review show moderate quality evidence of a clinical harm of the MDT for mortality, but moderate quality evidence of a clinical benefit from reduced hospitalisations, and low quality evidence of an improvement in quality of life.


The outcomes extracted in the clinical review show moderate quality evidence of a clinical harm of the MDT for mortality, but moderate quality evidence of a clinical benefit from reduced hospitalisations, and low quality evidence of an improvement in quality of life. As mentioned above, the evidence on mortality was very imprecise and based on small numbers. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 Overall the committee considered that overall the MDT may be cost saving and provide a clinical benefit; however, this is uncertain. No studies were identified that assessed the cost effectiveness of short term MDT intervention in high risk heart failure patients or any length MDT intervention in low risk heart failure patients. The committee agreed that the economic evidence suggests that an MDT reduces costs overall compared to usual care due to reduced hospitalisations, and noted that although each of the studies consisted of different competencies, the committee noted that a cardiologist and specialist nurse were included in all of the economic studies reviewed and therefore agreed that a physician with a subspecialty interest in heart failure, and a specialist heart failure nurse should be included in the core MDT. The committee discussed that the current composition of MDTs in clinical practice varies. The core professionals in most teams currently consist of a cardiologist and a specialist nurse as a minimum and in some cases can include many other professionals from other specialties. The committee therefore considered that the recommendation to have an MDT with a core team consisting of a physician with subspecialty interest in heart failure, a specialist heart failure nurse, competencies to manage prescribing, that could refer to other specialties if necessary, would not have an overall cost impact.


The committee therefore considered that the recommendation to have an MDT with a core team consisting of a physician with subspecialty interest in heart failure, a specialist heart failure nurse, competencies to manage prescribing, that could refer to other specialties if necessary, would not have an overall cost impact. Other considerations Current NHS practise in this area is variable. It was said that in some areas there is a lack of access to specialist heart failure teams, despite the previous recommendations. The committee was aware of the BHF Heart Failure Audit: this was carried out in a large proportion of NHS hospitals in England and Wales, and shows that following a decompensation 70% of patients receive an appointment for a cardiologist, and 60% of patients have a referral to a specialist cardiac nurse. The committee heard from the cardiologists in the group, who considered the HF nurses to be invaluable in managing their caseloads and clinics. The specialist nurses could often take on the management of the heart failure patients who were in need of more comprehensive support. They reported that the psychological support and care that specialist nurses provide could not be replicated by a cardiologist stand-alone clinic. They also noted that it has been the practice in the UK in many areas for specialist nurses or prescribers to optimise evidence-based medication (that is, ACE-inhibitors and beta-blockers, with MRA where appropriate), but that this is currently determined locally. From another perspective, the committee heard that patients very much valued someone to speak to about their illness, and that this is currently often delivered by HF nurses. They also spoke about how the MDT can encourage self-management, and this was more than just giving information or education, but included giving a patient confidence.


They also spoke about how the MDT can encourage self-management, and this was more than just giving information or education, but included giving a patient confidence. They felt this was often not provided to the same level in primary care, and it may not be picked up by the studies. 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 committee heard from the general practitioners that they recognised that there were high risk HF patients who need more intensive support, particularly patients who had just been discharged from hospital after an acute decompensation. However, they felt that specialist input may not be required for people who are stable. They emphasised the importance of holistic care, which is best delivered by primary care professionals, particularly as most patients with heart failure have several other conditions. They would value a system that would offer timely extra support to patients and GPs when necessary, but kept primary care at the centre. The concept of medicines optimisation in HF was discussed. Often the studies reported adding medication and up-titration, but optimisation is about more: starting, stopping, adjusting, and monitoring, all tailored to the individual patient. It is especially important in this population that the prescriber is adjusting their approach depending on comorbidities, and whether this occurred is not well reported in the studies. The NICE guidelines on multi-morbidity (https://www.nice.org.uk/guidance/ng56) were referred to as helpful in this area. Given the large and increasing population of patients with heart failure, with limited NHS resources, the committee agreed that the recommendations needed to prioritise specialist MDT access for those in greatest need who will gain the greatest benefit. If stable patients are managed in general practice, they will need regular review, informed by their needs.


If stable patients are managed in general practice, they will need regular review, informed by their needs. The committee emphasised the importance of a personalised approach, such as that described in the NICE multi-morbidity guideline (https://www.nice.org.uk/guidance/ng56). 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 Transition between heart failure care settings Given the chronic nature of heart failure and its occurrence in populations in whom multiple morbidities are common, management of heart failure involves interaction between primary and secondary care services. People with heart failure are often admitted to secondary care settings with acute deterioration in heart failure (see NICE acute heart failure; CG187) and then transferred to the care of the heart failure multidisciplinary team (MDT) for management in the community. Once their clinical care has been optimised, people with heart failure are discharged back to the care of the routine primary care service but may need to re-access care thorugh the MDT. Evidence has accumulated that that the complicated nature of these transfer processes and the complexity of liaison between different teams can affect the quality of care delivered to people with heart failure. This question reviewed patient and staff experiences of these transfer processes and sought to find evidence on how these could be improved. 9.3.2 Review question: What are the experiences/preferences of staff and patients during transition between different heart failure care settings (including primary, secondary and community care)? For full details see review protocol in Appendix A. Table 130: Characteristics of review question Objective Explore patient and staff experiences and preferences regarding transition and continuity of care at the interface of different care settings in heart failure.


Table 130: Characteristics of review question Objective Explore patient and staff experiences and preferences regarding transition and continuity of care at the interface of different care settings in heart failure. This may enable the identification of barriers (where the problems are) and facilitators (examples of good practice) to continuity of care when transitioning between heart failure care settings. Population and setting Patients with heart failure in a primary care, outpatient or community setting. Carers for such patients, both family/informal carers, and health-care professionals (HCP) Context Any description of patient or staff member experiences or preferences regarding transition and continuity of care at the interface of different care settings. Review strategy Synthesis of qualitative research. Quality of the evidence will be assessed by a GRADE CerQual approach for each review finding. 9.3.3 Qualitative evidence A search was conducted for qualitative studies exploring experiences or preferences of people with heart failure (CHF) or health care professionals (HCP) regarding transition and continuity of care at the interface of different heart failure care settings. Fifteen qualitative studies were included in the these are summarised in Table 131 below. Key findings from these studies are described in the qualitative evidence synthesis (section 9.3.3.4) and summarised in the qualitative evidence summary (section 9.3.3.5). See also the study selection flow chart in Appendix C, study evidence tables in Appendix F, and excluded studies lists in Appendix I. Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.3.3.2 Qualitative synthesis The guideline committee was aware that the issue of continuity is covered in the Patient experience in adult NHS services NICE Clinical Guidance February 2012 (CG138)233 , and wished to build on that guidance.


ISBN: 978-1-4731-3093-7 9.3.3.2 Qualitative synthesis The guideline committee was aware that the issue of continuity is covered in the Patient experience in adult NHS services NICE Clinical Guidance February 2012 (CG138)233 , and wished to build on that guidance. Therefore, this review used the framework of the recommendations from that guidance to synthesise the heart failure specific findings from this review, while also collecting heart failure specific themes not covered in that guidance. The most relevant recommendations from CG138 are as follows: Assess each patient s requirement for continuity of care and how that requirement will be met. This may involve the patient seeing the same healthcare professional throughout a single episode of care, or ensuring continuity within a healthcare team. (Continuity) For patients who use a number of different services (for example, services in both primary and secondary care, or attending different clinics in a hospital), ensure effective coordination and prioritisation of care to minimise the impact on the patient. (Co-ordination) Ensure clear and timely exchange of patient information: (Communication) o between healthcare professionals (particularly at the point of any transitions in care) o between healthcare and social care professionals (with the patient s consent). Give the patient (and their family members and/or carers if appropriate) information about what to do and who to contact in different situations, such as out of hours or in an emergency. (Contact and Access) This review uses these recommendations to define four findings in which to group the subfindings of our review. We fitted evidence to this framework, and separately collected evidence that did not fit into this framework, as shown in the figure below. Figure 6: Framework for synthesising review results Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights.


Figure 6: Framework for synthesising review results Chronic Heart Failure Referral and approach to care NICE 2018. All rights reserved. Subject to Notice of rights. ISBN: 978-1-4731-3093-7 9.3.3.3 Summary of included studies Table 131: Summary of studies included in the review. Abbreviations: Pt = patients with CHF, HCP = health care professionals, NYHA = New York Heart Association Functional Classification Study Design Population Research aim Comments Semi-structured interviews with pt + carers, taped and transcribed verbatim. Data coded and analysed by two researchers. Four themes most relevant to aims presented. N=10 CHF pt recently discharged from hospital and one person each that they lived with and nominated a carer. Age: mean 72 (SD 5) Severity NYHA II-IV (6/10 NYHA III) Explore the impact of heart failure on the lives of older pt and their informal carers. Part of larger study on palliative needs. Setting: UK, Barnsley. Andersson Semi-structured interviews with pt about daily life with CHF, and their experience of information-giving and follow-up. Informed by grounded theory. N= 4 pt who had been treated in a HF clinic, and were now discharged to primary care. Severity: Not stated Investigating whether pt need for information, education and knowledge are met to the same extent in the HF clinic and primary care. Setting: Small town in Sweden. Baudendistal Pt interviews with open section and a second more focused part. Content analysis by two researchers independently, then discussed within the research team. N= 17 pt identified by GPs with CHF with LVEF<35%. Age: mean 72 (SD Severity: Not stated Explore perspectives of pt with CHF on their treatment across multiple care settings and to what extent these perspectives are represented in current quality indicators. Part of QUALIPAT heart project, which aims to find patient-centric quality indicators for care.


Part of QUALIPAT heart project, which aims to find patient-centric quality indicators for care. Setting: Academic GP practices, Heidelberg, Germany. Semi-structured interviews with pt with advanced CHF, carers, health and care professionals. Pt interviewed every three months for up to a year. Interviews were followed by focus groups. Concurrent analysis using narrative analysis framework. N= 20 pt with advanced CHF and their carers interviews, interviews). Five died during follow- up and family gave bereavement interview. Age: mean 70 (range Severity: NYHA IV Provide a patient- centric account of the changing and evolving needs of people with advanced heart failure, and how services address these. Part of larger palliative care project. Setting: UK, region unclear 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 Semi-structured interview with CHF-HCP. Analysis follows pragmatic variant grounded theory with a degree of constant comparison. N= 12 HCP involved in specialist HF services (cardiologists, geriatricians, general physicians and specialist GPs). Explore reasons for the variations in the diagnosis and management of heart failure and identify barriers to the provision of uniformly high standards of care. Setting: UK, Durham and Tees SHA Gallacher Qualitative secondary analysis. Use archived interviews with pt collected for related research (unpublished). Analysis used Normalisation Process . Two authors designed a coding framework, while a third adjudicated. N= 47 pt with a CHF diagnosis based on echo, taking ACE- inhibitors and a diuretic, sampled from primary care to mirror demographics of CHF. Age: mean 73 (range Severity: Not stated Identify and understand the components of treatment burden to inform the development of tools to measure this, HF being a condition likely to have high treatment burden and comorbidity. Setting: UK, not clear where or when.


Age: mean 73 (range Severity: Not stated Identify and understand the components of treatment burden to inform the development of tools to measure this, HF being a condition likely to have high treatment burden and comorbidity. Setting: UK, not clear where or when. Gastelurrutia Semi-structured interviews with HCP about health problems commonly comorbid with CHF (hyperuricemia, anti- platelet agents, anaemia and diabetes). Analysed using a total sample, open coding, constant comparative approach. N= 5 internal medicine specialists and cardiologists from a tertiary hospital HF clinic. Explore experiences in the pharmacological management of common comorbid health problems in heart failure in order to help clinical pharmacists provide real and practical help. Setting: HF clinic in Spanish hospital. Glogowska In-depth interviews with HCPs using a topic guide. Also allowed participants to raise their own issues, which could be carried forward to subsequent interviews. Analysed using the constant comparative method and systematic open coding. N= 24 clinicians (doctors, nurses and rehab workers) sampled from three healthcare settings: primary, community, and hospital in each of three geographical locations (i.e. nine settings total). Gain an understanding of the issues facing clinicians as they care for people with heart failure in the light of recent developments including the introduction of specialist heart failure nurses. Setting: UK. Locations were healthcare networks in South West, South Central and the Midlands with different models for providing HF care. Heckman Qualitative descriptive study about HF management in care homes, nested in a mixed- methods protocol. Three semi-structured focus groups of HCP.


Heckman Qualitative descriptive study about HF management in care homes, nested in a mixed- methods protocol. Three semi-structured focus groups of HCP. 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.


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.


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.


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.


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.


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 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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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).


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.


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.


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.


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 .


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 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 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.


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.


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.