Evidence review on information for confirmed bacterial meningitis

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 information provided when bacterial meningitis and/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 information content (including prognosis), information format, information sources, decision making, timing of information provision, information about follow-up, language, and communication. 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 low to high. Assessments of the potential methodological limitations of the primary studies were undertaken using the CASP checklist; overall concerns about 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 was “minor” for all review findings, which was due to studies restricting population to meningococcal disease with the potential to under-represent less severe forms of the disease. 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 3.

No evidence was identified for the following outcomes: theme of information content, decision making, or timing of information provision.

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. However, they acknowledged that there may be differences in the types and delivery of information 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 and the impact of the illness on the person’s ability to communicate. The committee noted that there were no differences in the emergent themes based on whether the 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 information. However, the committee highlighted that the information 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 information 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 information needs that were specific to bacterial meningitis and meningococcal disease.

There was moderate quality evidence from theme 1 (information at diagnosis) that parents would like more information about meningitis, diagnosis and treatment, and better communication regarding this. Based on this evidence, and their clinical knowledge and experience, the committee recommended that people with bacterial meningitis or meningococcal disease, their families and carers should be provided with information about what might happen during the course of the disease. The committee also agreed that information should include uncertainty around prognosis as the potential for long-term complications may not be apparent at this stage. However, the committee highlighted that, in their experience, fear often originates from a lack of information and, therefore, agreed that keeping people with bacterial meningitis or meningococcal disease and their parents or carers informed on when they can expect to know more is important to reduce anxiety. The committee acknowledged the importance of tailoring the information that is given to individual circumstances as providing people with information about all the possible short and long-term outcomes of bacterial meningitis and meningococcal disease and potential requirement of critical care in circumstances where people are alert and responding well to treatment may cause unnecessary alarm. Based on their knowledge and experience, the committee agreed people should be told about the risk of passing on the infection as this is something that is frequently asked about. They noted this may be particularly important for meningitis in neonates caused by group B streptococcus as antibiotic prophylaxis may be required during labour in subsequent pregnancies. The committee acknowledged that meningococcal and Hib (Haemophilus influenzae type b) infections are notifiable diseases and recommended that people with meningococcal or Hib infection and their parents, family members and carers should be made aware that preventative measures (for example, isolation) may be needed for close contacts.

Moderate quality evidence from theme 2 (information during hospitalisation) highlighted the need for more information during this phase of illness. Specifically, subtheme 2.1 (child’s physical appearance) showed that parents did not feel prepared for how different their child looked, or how they would act when withdrawing from sedative treatment and found this distressing. Therefore, the committee recommended that people are informed about how the illness, or its treatment, may affect appearance or behaviour. The committee highlighted some examples of how appearance may be affected based on their experience, including the presence of drips or other invasive devices, the potential for swelling associated with fluid resuscitation in people with septic shock, and the spreading of rashes or changes in skin colour associated with meningococcal disease. The recommendation also included the provision of information about the effects of sedative withdrawal (such as agitation or abnormal neurological behaviour). As discussed above, the committee discussed and agreed the importance of tailoring information so that it is relevant to the individual circumstances.

Sub-theme 2.2 (disease process) indicated that parents would like more information on the disease process and the opportunity to ask questions, particularly when their child was in an intensive care unit. The committee agreed that the opportunity to ask questions was important and recommended, based on their experience, that information should be repeated, people should be given multiple opportunities to ask questions and understanding should be checked, as people may be very distressed or fearful initially which may impact their ability to process or understand the information provided and they may need time to digest the information before asking questions.

Theme 3 (information on discharge from hospital) provided low to moderate quality evidence about areas where people wanted more information at the point of discharge from hospital. Specially, sub-theme 3.1 (navigating the system) provided evidence that people had to learn how to navigate the system themselves and didn’t know what to do next to access support, sub-theme 3.2 (long-term effects) further highlighted that people wanted more information about potential complications and long-term effects of illness, and sub-theme 3.3 (follow-up) indicated that there was a lack of clarity about the follow-up plan following discharge and again, some parents reported being told to ‘wait and see’. The committee agreed that information about these areas was important and therefore, recommended that people are provided with information about how they can access support (for example, contact details of meningitis charities) and what follow-up can be expected now and in the longer term in terms of assessments and aftercare. There was moderate quality evidence from sub-theme 2.3 (complications of disease) that parents were unaware of potential complications associated with bacterial meningitis or meningococcal disease and that they would have felt more prepared had information provision been better. The committee were aware that, based on their knowledge and experience as well as evidence from the reviews on long term complications (see evidence reviews I1 and I2), that there is a wide range of potential long-term complications that can occur, many of which may not be evident for several months, or potentially years in the case of neurodevelopmental outcomes in children. Therefore, the committee recommended that people should be made aware of potential long-term complications and uncertainties about what long-term complications they might experience. The committee also recommended that the follow-up plan is documented in a discharge summary so that people have detailed written information that they can refer to.

Based on their clinical experience of frequently asked questions, the committee recommended that people are provided with information on when they can likely resume normal activities, such as driving or travel, work or education, and exercise or sports, and the follow-up considerations which may affect these things.

There was moderate quality evidence from sub-theme 6.5 (enhanced communication between healthcare professionals) that parents reported poor communication between different specialists which results in support that was unresponsive to needs; however, when different professionals did communicate, they felt there were shared plans and goals that helped to meet their child’s needs. Therefore, the committee recommended that the hospital team should coordinate with tertiary and primary care and other specialists, and allied professionals and community teams (for example, audiology, and speech and language therapy departments) that will be involved in follow-up. The committee agreed this was important for ensuring that needs are effectively met and to avoid gaps in the provision of care.

There was moderate quality evidence from sub-theme 6.3 (lay-language) that the use of lay language was important so that parents could understand everything that was going on. The committee agreed that they did not need to make a specific recommendation about this as the use of simple, clear language that avoids jargon is covered by the guidelines cross-referenced above.

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. Whilst communication and information provision do consume resources, they are also a vital and routine part of healthcare provision. The committee felt their recommendations reflected good practice which would not entail a significant resource impact to the NHS and would help promote the provision of information that is valued by patients and carers when bacterial meningitis or meningococcal disease has been confirmed.