Respiratory syncytial virus (RSV) is a common virus affecting people of all ages (Jain et al, 2017). It often presents as a mild, self-limiting upper respiratory tract infection, with individuals remaining contagious for 3 to 8 days (Jain et al, 2017). However, in certain populations, including infants, infection can lead to severe disease requiring hospitalisation (Jain et al, 2017).
Every year, around 12 children for every 100 under the age of 5 years in England have a GP consultation due to RSV infection (Cromer et al, 2017). Many more will be seen by the wider primary care team, including health visitors, who will direct parents to the appropriate services. Those with severe signs and symptoms are often referred to secondary care services resulting in more than 16 000 hospitalisations in this age group annually (Reeves et al, 2017). Severe disease can manifest as bronchiolitis and pneumonia, and even lead to death (Jain et al, 2017). RSV incidence is generally seasonal, with a winter predominance in temperate climates. In the UK, seasons typically begin in October, peak in December, and last until February or March (Jain et al, 2017).
The Royal College of Paediatrics and Child Health (RCPCH) recommends that children admitted to hospital in the UK with suspected viral respiratory infections are tested for several viral pathogens, including RSV (RCPCH, 2023). However, this recommendation does not apply to children seen in primary care; thus, the exact incidence of RSV is difficult to monitor (Cromer et al, 2017). Nonetheless, the UK Health Security Agency (UKSHA) estimates that over 60% of children will have experienced an RSV infection by their first birthday (UKHSA, 2023).
All infants are at risk of RSV disease, regardless of underlying comorbidities (Murray et al, 2014; Reeves et al, 2019). A population-based study of nearly 300 000 births in England found that 85% of infants hospitalised for RSV-associated bronchiolitis were previously healthy and born at term (Murray et al, 2014). Furthermore, there is evidence to suggest that RSV infection in early childhood is associated with increased risk of developing sequelae later in life (Fauroux et al, 2017).
Due to the high incidence and severity of RSV infection and the associated fluctuating symptoms (Jain et al, 2017), the association with sequelae (Fauroux et al, 2017) and the historical lack of preventative options (Jain et al, 2017), RSV contributes to a substantial primary and secondary healthcare burden (Reeves et al, 2017).
The authors collaborated to review the literature and discuss the impact of RSV in infants through insights gained from their clinical roles in general practice, paediatrics and nursing in the UK healthcare system. This article highlights the multiple healthcare encounters involved, substantial resources required and the impact on healthcare professionals (HCPs) involved in diagnosing and treating these infants (Figure 1), particularly during the RSV season.
In-depth interviews were conducted with caregivers of two separate infants who had required emergency care following RSV infection. These interviews add a qualitative understanding of the lived experiences of caring for an infant with RSV disease and the impact the disease can have on the caregivers' quality of life (QoL; see Supplementary Material for further details).
The caregiver interviews were designed to collect opinions only, and thus, ethical approval was not required. The caregivers are referred to as Caregiver One and Caregiver Two throughout and both gave informed consent to participate and for quotes to be used in this review.
Initial presentation of RSV in infants
The decision to seek healthcare support
Most children with an RSV infection experience mild, cold-like respiratory symptoms such as nasal congestion, cough and fever (Jain et al, 2017). However, infants infected with RSV may go on to develop severe presentations, including bronchiolitis and/or pneumonia (Jain et al, 2017).
Indeed, RSV is the leading cause of infant bronchiolitis in the UK (UKHSA, 2023). A data linkage modelling study found over 80% of hospital admissions for bronchiolitis in infants in England to be attributable to RSV (Reeves et al, 2019). Bronchiolitis symptoms include difficulty breathing and feeding (UKHSA, 2023).
Symptoms of RSV disease in young children have been described as extremely worrying for caregivers, particularly early on during symptom onset (Díez-Gandía et al, 2021). In the interviews, caregivers described how they felt when they realised their infant was unwell.
Caregiver One explained:
‘I felt quite anxious as they [the infant] have no communication. You are constantly trying to guess what is wrong; you don't want to overreact, but you don't want to underreact. You feel out of control.’
Such a situation may lead to caregivers seeking healthcare support for their infants. In the UK, this may be accessed via their local GP surgery or the NHS 111 telephone or online services (Figure 1). Caregiver One described their reasons for seeking help:
‘When his breathing got progressively worse and wasn't getting any better, and he wasn't feeding, I contacted my GP [via telephoning the surgery]. We got an emergency appointment that day.
‘In the middle of the night he had a really high temperature, his breathing was laboured, I couldn't keep him awake and he stopped feeding. So, I rang 111.’
Caregiver Two noted:
‘I knew I should seek GP help. I contacted my GP and booked a same-day appointment.’
RSV awareness
Awareness of any disease is critical for timely diagnosis and treatment. Despite the fact that most infants experience an RSV infection by their first birthday (UKHSA, 2023), there appears to be a significant lack of RSV awareness across England in adults of child-bearing age, as seen with an English multicentre questionnaire (Wilcox et al, 2019).
Results found that most individuals (88% of 314) who were pregnant had very limited or no prior awareness of RSV (Wilcox et al, 2019). The lack of RSV knowledge is reflected in the caregivers' insights, as Caregiver One noted:
‘I had no prior awareness of RSV, a little of bronchiolitis. I was very surprised that I hadn't heard of RSV, particularly as it is so common and the effect it can have on babies. I did not know the illness could get worse again, nor that secondary infections could occur.’
Caregiver Two mentioned:
‘I had no awareness of RSV. I was given a bronchiolitis fact sheet but there was no mention of RSV.’
Although caregivers may know when their infant becomes unwell, it may be difficult to communicate or realise the severity of the symptoms due to an absence of knowledge about respiratory symptoms associated with RSV disease.
When asked how easy it was to access primary care and what factors may make it difficult, Caregiver One noted:
‘Although I wasn't aware of RSV, I was able to articulate the symptoms [through a telephone call to the GP]. I think if you are not educated on the symptoms or cannot articulate them, the child may not have been prioritised [for an in-person GP appointment].’
Increasing the awareness of communicable diseases such as RSV is a key tool in helping to reduce disease incidence and prevent future epidemics (Funk et al, 2009).
Children presenting with RSV infection in primary care
The burden of RSV in primary care
It is estimated that RSV is responsible for 12 primary care consultations per 100 children aged under 5 years annually in England (Cromer et al, 2017). These healthcare encounters result in an estimated 467 000 GP consultations related to RSV in 5-year-olds occurring annually in the UK (Fusco et al, 2022). In many instances, children can be effectively cared for with support from primary care services.
However, this often requires careful review and appropriate safety-net advice by experienced HCPs. Serial review by the same GP may present an attractive option for care, but such an approach may be difficult to achieve when there is already a significant workload in the system (Jeffers and Baker, 2016).
Primary care workload
A retrospective analysis of over 100 million primary care consultations in England found the direct clinical workload of GPs and practice nurses increased by 16% from 2007 to 2014, with the mean duration of consultations increasing by 6.7% over the same period (Hobbs et al, 2016). However, expenditures for primary care fell every year between 2010 and 2015 (Baird et al, 2016). Furthermore, more than 1.8 million calls were received by NHS England 111 telephone service in January 2023 alone (NHS, 2023).
The already stretched primary care system in the UK can influence a caregiver's decision to seek support for their infant, as Caregiver One noted when asked if they would have done anything differently when seeking healthcare support:
‘I'm aware of how busy the NHS are and how much stress they are under, so I didn't want to waste their time … Looking back, I would have gone to the GP earlier. I think there is a balance of not burdening the NHS but still getting reassurance and care.’
Workload challenges in primary care may impact the ability to provide continuity of care (Jeffers and Baker, 2016). Decreased continuity of care has been associated with increased healthcare resource use and mortality (Gray et al, 2018). Multiple healthcare encounters were experienced by both caregivers. Caregiver One recalled:
‘Because of his symptoms and his young age [8 months], we were given a GP appointment relatively quickly. The GP advised that I should continue to monitor him at home. Later that day his breathing had worsened, I rang 111; they sent an ambulance.’
Caregiver Two went on to discuss,
‘I took him to the doctor's and they [the GP] said that it was a viral infection, there wasn't anything the doctor could do, so we went home. [A few days later] I took him back to the doctor's as he hadn't improved.’
The hesitancy of GPs to refer infants to hospital could be related to the change in the National Institute for Health and Care Excellence (NICE) guidelines on the diagnosis and management of bronchiolitis in children and thresholds for hospital referral and admission (NICE, 2023). In the 2015 version, HCPs were advised to immediately refer a child with bronchiolitis to emergency hospital care if their oxygen saturation levels were less than 92% (NICE, 2015).
However, significant changes were made in the most recent (2021) version and this criterion was removed from the immediate referral recommendation. Now, HCPs are advised to consider hospital referral if oxygen levels are less than 92% (Table 1) (NICE, 2023). While reducing the threshold for immediate referral puts more emphasis on overall clinical judgement and may ease some of the burden on secondary care, it may add to the number of caregivers seeking repeat primary care consultations for children with RSV disease. The recommended cut-off for hospital admission is narrower than for referral (NICE, 2023). Therefore, this may lead to infants with bronchiolitis meeting the criteria for referral, but then going on to be discharged due to not meeting the admission criteria.
| Criteria for immediate referral for emergency hospital care for a child with bronchiolitis | Criteria for considering referral to hospital for a child with bronchiolitis |
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| Any one of the following: | Any one of the following: |
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Infants hospitalised with RSV
The burden of RSV in secondary care
RSV-associated illness remains a significant cause of hospitalisations of infants in the UK (Reeves et al, 2017). A linear regression modelling study, found 23 310 hospital admissions of infants to be attributed to RSV in England annually from 2007 to 2012. Most (~78%) had a primary diagnosis of bronchiolitis (Reeves et al, 2017). Furthermore, bronchiolitis has been estimated to contribute to 12.75% of PICU admissions among infants in England (Green et al, 2015).
Secondary care workload
A survey conducted by the European Health Management Association from August 2021 to January 2022 analysed the impact of RSV on the healthcare system across 20 European countries, including the UK. Findings showed a system-wide increase in HCP workload, stress and exhaustion, predisposing HCPs to burnout during the RSV season. Among respondents in general paediatric wards and PICUs, 85% and 75%, respectively, considered stress and exhaustion as major impacts of the RSV season, with 88% considering workload to be the leading factor. High rates of RSV-associated hospitalisations during the season were considered an extensive contributor to reduced hospital-bed capacity, causing significant backlog in paediatric care, disrupted patient flow and delayed elective surgery (European Health Management Association [EHMA], 2022).
Most respondents reported an insufficient number of bedside nurses to cover the number of patients and associated workload. Furthermore, although early RSV diagnosis supports timely care and disease management and surveillance, the survey discovered a substantial need to improve and expand RSV diagnostics through affordable and convenient testing. Overall, the surge in demand for healthcare during the RSV season places substantial strain on the system, contributing to deteriorating working conditions for HCPs and potential for suboptimal patient care, with many infants receiving unnecessary and ineffective care (e.g. antibiotics and chest X-rays) (EHMA, 2022).
The patient impact of workload in secondary care settings, particularly during the RSV season, was highlighted by Caregiver One when asked about their wait to be examined:
‘The ambulance took us to hospital, but we had to wait a few hours to be seen. This wait was too long.’
Secondary care and clinical guidelines
Workload challenges can affect guideline adherence, as seen by a survey of physicians assessing barriers to adherence. Of 400 responders, 65% believed time constraints due to clinical responsibilities to be a significant barrier. A similar proportion (61%) considered the complexity of guidelines to likely decrease adherence (Qumseya et al, 2021). The clinical assessments recommended in the bronchiolitis guidelines may also be challenging to conduct (Wainwright and Kapur, 2015; NICE, 2023). For example, determining oxygen saturation targets in infants with bronchiolitis can be difficult and may be influenced by clinical judgement, resource availability and cost (Wainwright and Kapur, 2015).
Returning to healthcare settings
The current NICE bronchiolitis guidelines advise HCPs on when children should be discharged and provides key safety information for caregiver reference when caring for a child at home. The latter helps caregivers recognise ‘red flag’ symptoms and how to get immediate support from an appropriate professional if such symptoms develop.
Following hospitalisation due to RSV, recovery and then discharge, it is possible for an infant's condition to decline and for caregivers to seek further healthcare support (Figure 1). Caregiver One discussed fluctuating symptoms when asked about their experience after returning home:
‘Three days after being discharged, he started to get worse, his symptoms went backwards. I contacted 111, they sent an ambulance, and we were back in hospital.’
For infants hospitalised due to bronchiolitis, readmission in the year following initial diagnosis can occur (Saint et al, 2018). In a study of over 40 000 children admitted to hospital in England with a diagnosis of acute bronchiolitis, irrespective of cause, 37% were readmitted in the following year. Of these, 64% were for respiratory causes, of which 22% were positive for RSV (Saint et al, 2018). Caregiver One noted:
‘When we went back to hospital, doctors explained it may be a secondary bacterial infection or it could be a relapse.’
To add to the burden that RSV can bring, RSV infection in early life is associated with the development of long-term respiratory problems in later life, such as asthma and recurrent wheeze (Carroll et al, 2009; Wang et al, 2022).
Subsequent conditions can increase primary care use and the associated costs, beyond the first, primary RSV infection (Figure 1).
HCP training
Non-pharmaceutical interventions introduced during the COVID-19 pandemic substantially affected clinical education and experience delivery to HCPs. In 2022, a global survey of 67 medical schools evidenced a shift from in-person access to classrooms and healthcare facilities to remote access to digital platforms during the pandemic (Frenk et al, 2022). Yet, a survey conducted in May 2020 across 40 UK medical schools revealed the majority (76%) of students believed online teaching did not sufficiently replace direct patient contact in clinical education (Dost et al, 2020).
Additionally, circulation of viruses, other than the virus that causes COVID-19, significantly declined during the pandemic. This resulted in substantially fewer associated healthcare encounters compared with before the pandemic (Bardsley et al, 2023), reducing the opportunity for HCPs to gain experience of caring for patients with RSV disease.
Insufficient experience and skill among HCPs can pose challenges for diagnosis and caring for patients as seen by a qualitative study in England investigating hospital referral rates among GPs (Calnan et al, 2007). The study found that the highest referral rates made by out-of-hours GPs were among those with less confidence, compared with HCPs with the lowest rates of referral, highlighting the need for educational programmes to support competency and confidence (Calnan et al, 2007). Furthermore, a standard practice for infants with bronchiolitis is to provide oxygen through a high-flow nasal cannula; however, not all nurses have the necessary expertise and technical skills, subsequently reducing the use of this device (NICE, 2023; O'Brien et al, 2023).
Such training and experience insufficiencies may lead to reduced caregiver confidence in decisions made by HCPs, as Caregiver One noted when asked how they felt about their infant being discharged from hospital:
‘We stayed in hospital overnight to get his oxygen levels up. His oxygen levels became stable, and he started to feed again. The following day, they let us leave. I did think this was a little early to be sent home … I didn't feel 100% sure about taking him home and looking after him.’
Impact on caregivers
When an infant shows signs of RSV infection, there can be significant impact on the caregiver's QoL, disruption to daily tasks and costs associated with caring for the infant, such as taking time off work and travelling to and from healthcare appointments (Díez-Gandía et al, 2021; Fusco et al, 2022). The annual out of pocket costs associated with RSV infection in under-5-year-olds incurred by caregivers in England has been estimated at £1.5 million (Fusco et al, 2022). The negative impact on daily life was confirmed by both caregivers when asked how their infants' illness affected their home life. Caregiver One explained:
‘The experience affected home life; my husband took time off work, it put an emotional, mental and physical strain on us, with a lack of sleep. It impacted daily activities; we weren't eating properly.’
Caregiver Two added:
‘The experience impacted my home life; I was sleep-deprived. I relied on friends to look after my older daughter, or she had to come to the hospital with me.’
The financial implications on families are more important than ever as, in 2022, many families across the UK entered poverty due to the ‘cost of living’ crisis. Therefore, HCPs are now being asked to use a ‘social lens’ when caring for children, as the crisis can have deep, broad and permanent consequences on child health (Singh and Uthayakumar-Cumarasamy, 2022).
Conclusions
RSV disease has a significant impact on infants and their families, and on the healthcare system in the UK. Infants with RSV disease increase the workload of an already strained healthcare system. This additional pressure is particularly evident during the winter months during the respiratory viral season. It affects every part of the system that provides care for children, from GP practices through to PICUs. This burden is escalated due to the multiple healthcare encounters and increased resource use involved in an infant's recovery. Furthermore, the lack of RSV awareness among the population, barriers around accessing care, excessive workloads across the system and challenges to HCP training and education can impose further burden.
There is need for timely notification of guideline changes; enhanced access to rapid RSV diagnostic testing; ongoing training for HCPs to feel confident and capable in managing an infant with RSV disease; increased resource availability during the RSV season; and education of caregivers on RSV infection and its complications.