Evidence review on support for confirmed bacterial meningitis or meningococcal disease

Included studies

Four studies were included in this review, 2 mixed-methods studies (Clark 2013, Wisemantel 2018), and 2 qualitative studies (Haines 2005, Sweeney 2013).

The included studies are summarised in Table 2.

All studies reported the views and experiences of parents or carers of babies, children, and young people with confirmed bacterial meningitis or meningococcal disease.

The data from the included studies were synthesised and a number of central themes and sub-themes emerged (as shown in Figure 1).

One study was from the UK and Ireland (Clark 2013), 1 study was from England (Haines 2005), 1 study was from the UK (Sweeney 2013), and 1 study was from Australia (Wisemantel 2018).

See the literature search strategy in appendix B and study selection flow chart in appendix C.

Excluded studies

Studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.

Included studies

A single economic search was undertaken for all topics included in the scope of this guideline, but no economic studies were identified which were applicable to this review question.

The outcomes that matter most

The review focused on the views and experiences of the support provided when bacterial meningitis or meningococcal disease is confirmed. The committee identified a number of potential themes as illustrative of the main themes to guide the review. These themes were type of support, timing of support, and availability of support. However, the potential themes were not exhaustive, as the committee did not want to constrain the evidence, and an emergent approach was taken to the thematic synthesis.

The quality of the evidence

The evidence was assessed using GRADE-CERQual methodology and the overall confidence in the findings ranged from very low to moderate. Assessments of the potential methodological limitations of the primary studies were undertaken using the CASP checklist, and overall concerns regarding methodological limitations were rated as “minor concerns for all the review findings”. The most common issues were lack of consideration of the relationship between researcher and participants, no justification for data collection methods as it relates to data saturation and potential for recruitment bias. Concerns about relevance ranged from “minor” to “serious”. Minor concerns were due to studies restricting population to meningococcal disease with the potential to under-represent less severe forms of the disease. Serious concerns were due to the study population as well as a representation that Public Health England can be contacted by the public for advice which may not be obtainable in the UK. Concerns about coherence were “no or very minor” for all the review findings, as there was no data that contradicted the findings nor was there ambiguous data. Concerns about adequacy ranged from “no or very minor” to “serious”. There were serious concerns for review findings when evidence offered no rich data, moderate concerns for review findings when evidence offered some rich data and minor concerns for review findings that were based on evidence offering moderately rich data. The number of studies contributing to each subtheme ranged from 1 to 2.

No evidence was identified for the theme of timing of support.

Benefits and harms

All the evidence identified for this review focused on the views of parents or carers. However, the committee agreed that the recommendations made should apply equally to people with confirmed bacterial meningitis or meningococcal disease themselves. Although, they acknowledged that there may be differences in the types and delivery of support that is provided to people with confirmed bacterial meningitis or meningococcal disease and their parents or carers due to factors such as the developmental age of the individual. The committee noted that there were no differences in the emergent themes based on whether the suspected diagnosis was bacterial meningitis or meningococcal disease.

The protocol for this evidence review did not include neonates because the NICE guidance on Neonatal infection includes recommendations on support. However, the committee highlighted that the support needs covered in this review are very specific to bacterial meningitis and overlap significantly with recommendations about responding to potential long-term complications (which include neonates) and agreed that the recommendations about support post diagnosis that applied to babies (28 days to 1 year) should be extended to neonates.

The committee were aware of existing NICE guidance on patient experience in adult NHS services and babies, children and young people’s experience of healthcare, and focused recommendations on support needs that were specific to bacterial meningitis and meningococcal disease.

There was moderate quality evidence from theme 1 (need for support) and theme 4 (type of support) that showed that parents would like to seek support and understanding about bacterial meningitis and meningococcal disease. Moderate quality evidence from sub-theme 1.1 (diagnosis) highlighted that parents would like access to emotional support at diagnosis, and they felt that it might be helpful to talk to someone who had insight into the situation (for example, parents having gone through a similar situation) and to have specific psychosocial support as it could be a very traumatic and upsetting time. The committee therefore recommended that emotional support and pastoral support should be provided for people with bacterial meningitis or meningococcal disease and their families and carers during hospitalisation. Based on the evidence, and their clinical knowledge and experience, the committee recommended that referral to psychological interventions should be considered for people with bacterial meningitis or meningococcal disease who need more specialist psychological support. The committee acknowledged that these were good practice points but were aware that these needs were often unmet.

The evidence (sub-theme 1.3: post-discharge from hospital) showed that parents also found the events following diagnosis of bacterial meningitis or meningococcal disease distressing and would like emotional support after their child was discharged from hospital. Based on this evidence, and their clinical knowledge and experience, the committee recommended that referral to psychosocial support should be considered as part of preparing for discharge.

The committee discussed that, based on their experience and on evidence reviewed in evidence reports I1 and I2, bacterial meningitis and meningococcal disease could increase the risk of poor educational outcomes. The committee reflected that this might be due to a wide range of other potential long-term complications, such as cognitive deficits, psychological and behavioural problems, and sensory impairment. In this review (sub-theme 2.2: educational), parents reported difficulties in accessing educational support for their child with cognitive impairment, visual impairment, and psychosocial impairments. Therefore, the committee recommended that the need for educational support should be considered as part of planning for discharge, and discussions should be had with the patient’s GP (and school, where appropriate) to facilitate post-discharge access to educational support where this is needed.

The committee discussed follow-up care after discharge and acknowledged that long-term monitoring is required to identify latent or evolving sequelae that may not be apparent at discharge (see evidence reviews I1 and I2). Sub-theme 2.1 (Navigating the system) showed that parents had difficulties in accessing sufficient or timely care for their child after discharge from hospital. Sub-theme 2.2 (educational) and 2.3 (developmental) also highlighted that parents felt that the risk of long-term complications, including developmental impairment, after bacterial meningitis were poorly understood and addressed by the health and social care system, making accessing services harder. The committee agreed that people with bacterial meningitis or meningococcal disease should have appropriate follow-up care with appropriate services so that they receive optimal care. This was also supported by evidence from sub-theme 4.1 (individualised to child) and 4.3 (reassurance), which showed that parents valued support that was tailored to their child’s needs and felt that appropriate follow-up care would provide them with reassurance in terms of their coping skills or their child’s recovery. Based on this evidence, the evidence on long-term complications (evidence reviews I1 and I2), and their clinical knowledge and experience, the committee recommended that follow-up reviews should be arranged; at 4-6 weeks after discharge for people with bacterial meningitis or meningococcal disease of any age; and at 1 year after discharge for neonates and babies. These reviews should cover the neurodevelopmental, orthopaedic (for meningococcal disease), sensory and psychosocial complications that were identified by evidence reviews I1 and I2 to be associated with bacterial meningitis and meningococcal disease.

Cost effectiveness and resource use

This qualitative review question did not consider decisions between competing alternatives and therefore is not directly relevant to the tools of economic evaluation. Nevertheless, the support recommendations made for confirmed bacterial meningitis and meningococcal disease do involve the use of scarce NHS resources and the committee made a qualitative assessment of the cost-effectiveness of their recommendations.

The committee considered that it would be cost-effective to arrange a review 4-6 weeks after discharge from hospital in order that any complications arising from bacterial meningitis or meningococcal disease could be identified to facilitate future management. The committee considered that these recommendations reflected good practice and would not represent a significant resource impact to the NHS. Likewise, they considered further review and follow-up would be cost-effective for babies (including newborn babies), children and young people as there are potential long-term complications that may not be apparent at an earlier stage.

The committee recognised that psychological interventions can be expensive but considered that referral would be cost-effective in the small population who would benefit from more specialist psychological support. The committee noted that current NHS practice was varied and hoped the recommendation would help standardise best practice.