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Brown KL, Wray J, Knowles RL, et al. Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study. Southampton (UK): NIHR Journals Library; 2016 May. (Health Services and Delivery Research, No. 4.19.)

Cover of Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study.

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Appendix 11Infant Heart Study: recommendations and suggested metrics

Document containing main recommendations of the intervention development group and suggested metrics from the Infant Heart Study as circulated to the Clinical Reference Group prior to their meeting on 26 March 2015

This document is based on the headline findings of IHS, a 2-year multicentre multidisciplinary research study funded by the NIHR with additional support from the Health Foundation. The primary funding for the IHS was from the NIHR Health Services and Delivery Research programme (project number 10/2002/29). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR Health Services and Delivery Research programme or the Department of Health. Please note that these are emerging findings, since the underpinning research data will be peer reviewed in 2015 within the grant report for this project.

Main suggestions

Structured discharge and transfer of care

  • All infants should eventually have a nationally standardised structured discharge document that is distributed electronically to all of the health professionals involved in their care. The IHS has proposed the minimum content for this discharge document based on the evidence gathered. A national template would need to be appropriately reviewed, piloted and evaluated. Meanwhile, the following recommendations are all amenable to auditing within the current disparate discharge documents:
  • At discharge from the specialist centre, all infants should have a named cardiologist, named paediatrician (with expertise in cardiology where possible) and named specialist nurse (e.g. cardiac liaison role or equivalent). Where it is not possible to allocate a named specialist nurse, there should be a named specialist nursing team. Responsibility for ensuring this lies with the specialist centre.
    • This should be documented in the discharge summary. The use of a template would facilitate local provision of audit data but in principle a template is not absolutely necessary. However, responsibility for providing audit figures for the proportions of discharge summaries containing this information should lie with the specialist centre.
  • Infants in the following groups should receive ‘step-down’ care, that is discharge via their local hospital:
    • all infants with HLHS, UVH or PA
    • all infants with neurodevelopmental conditions
    • all infants with length of stay in the specialist centre > 1 month.
    • Ideally this ‘step-down’ should be as an in-patient transfer (even if just for 24 hours). If this is infeasible owing to bed shortages then they should be admitted as a day case. At a minimum (given severe resource constraints) they should be seen as an outpatient as soon as possible (e.g. within 48 hours). In principle this can be audited using returns from the specialist centres.
  • At discharge home, either from the specialist centre or local hospital if step-down, all patients should also have a named GP and a named pharmacist (if discharged with a long-term prescription). It is more difficult to aggregate audit data for this recommendation for patients who have ‘stepped down’, although it is identified as an important aim. Pending better information exchange, it should still be possible for specialist centres to report the proportion of patients discharged without a named GP.

Home monitoring

  • Home monitoring should be provided for all infants with a primary diagnosis of HLHS, functionally univentricular heart or pulmonary atresia (including PA + intact ventricular septum). There should be a nationally agreed protocol for home monitoring of these patients that is based on the best available evidence; this may take some time to achieve. The IHS recommends that further research is conducted on the effectiveness of constituent components of home monitoring. However, in the meantime, it should be possible for specialist centres to provide audit data showing the proportion of patients in these categories who are on home monitoring pathways, however defined locally.

Guidance on signs, symptoms and response (e.g. a traffic-light tool)

  1. All families and all of the health professionals involved in their support should receive the same clear guidance on ‘what is normal’ for that child, signs and symptoms to look for, how to respond and important contact numbers, for example in the form of a traffic-light tool. Ideally the format and content of this guidance should be standardised nationally, with scope for tailoring to local areas/networks as appropriate. This may take some time and cannot be implemented immediately, although it will be worth considering how best to take this recommendation forward nationally.
  2. The IHS demonstrated that there is an urgent need for such guidance (e.g. traffic-light tool) to be developed and recommends that it should be evidence-based as far as possible and that its implementation should be evaluated (i.e. its impact on families and health professionals monitored).

Information and training for families prior to discharge

  • Health professionals should use a nationally standardised checklist in order to plan, deliver and audit the provision of training and information for all families prior to discharge. The IHS will propose the content of a checklist based on the evidence gathered. A national checklist would need to be appropriately reviewed, piloted and evaluated. Again, this may take some time to agree nationally and it will be worth considering how best to take this recommendation forward.

Network review of deaths outside specialist centre

  • The post discharge death of any infant outside a specialist centre should be reported to the specialist centre and reviewed at a Network Mortality and Morbidity meeting attended in person, by teleconference or at least a written summary be distributed for quality improvement purposes. In principle, the paediatric team with a relationship to the deceased patient should perform the fact-checking and lead the discussion. Looking ahead, every death outside the specialist hospital should be recorded on a standard pro forma documenting the antecedents of every death. This could potentially be aggregated nationally, although further discussion about how this could be done is required.

Family buddying

  • All families should be offered an opportunity to connect with other families (e.g. through social media or charity support groups) and those families more likely to experience language/cultural barriers to accessing support should be offered buddying. The IHS notes that there would need to be appropriate infrastructure to support this (e.g. training for buddies) and that it may be best facilitated through the charity sector.

This is not easily audited in the first instance, but if the charity sector is prepared to evolve such a facility, it may be possible eventually to provide information about the beneficiaries.

Suggested metrics: for immediate consideration for the Quality Dashboard

The evidence and suggestions from IHS would support inclusion of the following process and outcome measures on the Quality Dashboard.

Please note, however, that while IHS suggests the monitoring of out-of-hospital outcomes, the analytical steps and processes required to do this are beyond the scope of IHS and would need to be considered by the National Congenital Heart Diseases Audit [at National Institute for Cardiovascular Outcomes Research (NICOR)].

BOX 31

Outcome measures 1

Outcome measuresa

Deaths outside a specialist centre within 1 year following infant heart surgery.

Emergency unplanned readmissions to PICU within 1 year following infant heart surgery for children with a primary diagnosis of HLHS, functionally univentricular heart or pulmonary atresia (including PA + IVS).b

Process measures

Percentage of infants who, at discharge from the specialist centre, have a named cardiologist.

Percentage of infants who, at discharge from the specialist centre, have a named paediatrician (with expertise in cardiology where possible).

Percentage of infants who, at discharge from the specialist centre, have a named specialist nurse (e.g. cardiac liaison role or equivalent) or named specialist nursing team.

Percentage of infants who, at discharge from the specialist centre, have a named cardiologist.

Percentage of infants who do not have a named GP at discharge from specialist centre.

Percentage of infants with a primary diagnosis of HLHS, functionally univentricular heart or pulmonary atresia (including PA + IVS) who are on home monitoring pathways, however defined locally.

a

Although IHS strongly recommends the monitoring of out-of-hospital outcomes, the analytical steps and processes required to do this are beyond the scope of the Study and would need to be considered by the National Congenital Heart Diseases Audit (at NICOR).

b

This is the patient subgroup for which home monitoring is recommended.

Suggested metrics: to revisit next year for the Quality Dashboard

The IHS surfaced a number of important and potentially problematic service areas for which there is considerable variability across the country and for which there are currently no guidelines or protocols. Evidence from the IHS supports the monitoring of metrics relating to these, but acknowledges that it would not be feasible to include them on the Quality Dashboard without some further work, and that indeed it may not be feasible to include all of them. The IHS findings would first need to be disseminated more widely within the community and agreement reached about the steps required for implementing the recommendations. For example, a number of metrics relate to standardised documents/protocols that would need to be developed and appropriately piloted beforehand. Others require further consideration as to how the information could be collected and/or aggregated. Furthermore, some may be considered more appropriate for local monitoring for improvement purposes, or linked into a CQUIN, rather than for inclusion on the national Quality Dashboard.

The IHS therefore suggests that the feasibility and appropriateness of including any or all of the following metrics on the Quality Dashboard should be revisited in the next 1 to 2 years and, in the meantime, steps taken to develop these areas.

BOX 32

Outcome measures 2

Outcome measuresa

Emergency unplanned readmissions to PICU within 1 year following infant heart surgery (for all infants).

Process measures

Percentage of infants with HLHS/UVH/PA/neurodevelopmental conditions/length of stay in the specialist centre > 1 month that receive ‘step-down’ care (i.e. discharge via their local hospital).

Percentage of infant deaths outside the specialist hospital that are discussed at a Network Mortality and Morbidity meeting, with details recorded on a nationally standardised pro forma.

Percentage of infants for whom a nationally standardised structured discharge document is completed prior to discharge and distributed electronically to all of the health professionals involved in their care.

Percentage of infants with HLHS/UVH/PA who are following a nationally agreed protocol for home monitoring.

Percentage of families that receive nationally agreed guidance on ‘what is normal’ for that child, signs and symptoms to look for, how to respond and important contact numbers (e.g. in the form of a traffic-light tool).

Percentage of infants for whom all of the health professionals involved in their care receive nationally agreed guidance on ‘what is normal’ for that child, signs and symptoms to look for, how to respond and important contact numbers (e.g. in the form of a traffic-light tool).

Percentage of families that receive all required training and information prior to discharge (facilitated using a nationally standardised checklist).

Percentage of infants who, at discharge home (either from specialist or local hospital), have a named GP.

Percentage of infants who, at discharge home (either from specialist or local hospital), have a named pharmacist (if discharged with a long-term prescription).

Percentage of families offered an opportunity to connect with other families (e.g. through social media or charity support groups).

Percentage of families more likely to experience language/cultural barriers to accessing support that are offered buddying.

a

Although IHS strongly recommends the monitoring of out-of-hospital outcomes, the analytical steps and processes required to do this are beyond the scope of the IHS and would need to be considered by the National Congenital Heart Diseases Audit (at NICOR).

Patient-Reported Experience Measures

The IHS supports the monitoring of patient reported experience measures alongside the process and outcome measures above, for example adopting a similar approach to the specialist Quality Dashboards (heart transplant, ECMO), which include three questions relating to patient-reported experience measures. This area would require further development work.

The importance of joined up service specifications/commissioning across specialist, local and community services

We emphasise that IHS findings demonstrate the need and potential for improvements across the entire patient journey spanning community, primary, secondary and specialist services. This would require service specifications and commissioning to be addressed not only for the specialist services commissioned by the Congenital Heart Services clinical reference group, but for all of these sectors. The IHS’s evidence of weak links across sectors and poor communication between different health professionals further suggests the need for joined-up service specifications and models of commissioning across the whole patient journey, including local and community settings.

Further information about the IHS is available from:

Sonya Crowe: xxxx

Kate Brown: xxxx

Kate Bull: xxxxx

Copyright © Queen’s Printer and Controller of HMSO 2016. This work was produced by Brown et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK363011
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