Our interviews provide a novel insight into carers’ accounts of their children's symptoms and evidence of possible failure to recognise the signs of serious infection by carers and clinicians.
Almost all carers reported something unusual about the illness which had particularly concerned them, mostly non-specific physical symptoms such as high fever, or behavioural changes such as lethargy, distress or reduced feeding. Pain in the torso was common in children aged 3 or more years, reported by more than 80% of carers and cited as the main cause for carer concern. In addition to the chest, other common sites of pain were the abdomen, side, back, shoulder and legs. Compared to children with uncomplicated pneumonia, those with pleural effusion or empyema experienced a significantly longer delay between the onset of torso pain and hospital presentation. Some carers provided evidence of possible misinterpretation of pain and breathing symptoms by clinicians prior to the index hospital presentation.
This study recruited cases from several hospitals in urban and rural locations. Data were collected directly from carers rather than from medical records and the purpose-designed interview schedule enabled us to elicit rich and detailed information. Carers were invited to talk openly and in depth about their children's symptoms, using their own terminology. Such discussion would rarely be possible during time-restricted medical consultations, so provided an opportunity to identify symptoms and illness characteristics of importance to carers rather than clinicians.
Nevertheless, our study has several limitations. First, our case series is only a small sample of the study population and is unlikely to represent the whole clinical spectrum of severity of childhood pneumonia presenting to hospital. The high prevalence of empyema, effusion and hospital admission in our sample strongly suggests that severe pneumonia is over-represented; this is probably due to an increased likelihood of invitation for cases with a longer stay in hospital and/or greater motivation of these carers to participate in the study. Furthermore, mild or unusual presentations may not have had a chest x-ray and thus not met our case definition. Second, data were collected retrospectively from carers and therefore may be prone to recall bias. To minimise this, interviews were carried out as soon as possible, but memory decay may have led to underestimation of the frequency of some symptoms. Finally, the absence of a comparison group precluded any estimation of the sensitivity and specificity of symptoms for radiographic pneumonia.
Whether a carer recognises illness in their child largely depends on what they consider ‘normal’ for their child, especially changes in behaviour such as eating and sleeping.20
In a qualitative study of 12 Samoan children admitted to hospital with pneumonia in New Zealand, carers described the illness as more serious than previous non-urgent illnesses, explaining this in terms of physical changes (most commonly breathing changes and fever) and behavioural changes such as lethargy and poor feeding.21
Similar changes were causes for concern to carers in our study. However, the small proportion of carers who reported concerns about difficult breathing or shortness of breath suggests that some may not have recognised this as a sign of serious infection. This is consistent with a qualitative study in Wales of children admitted with complicated respiratory infections (including pneumonia and empyema) which found that some carers failed to act immediately on recognition of altered breathing symptoms.22
Other case series in Europe have reported chest or abdominal pain in a minority of cases,12
but data were collected retrospectively from hospital records, without knowledge of whether or not clinicians had asked carers and children about pain. Carers may not necessarily volunteer this symptom, especially if they do not associate it with their child's illness or if it has been previously dismissed by a clinician, as found in our case series. Blacklock et al17
found that abdominal pain reported by parents was not a reliable predictor of serious respiratory infection, but their comparison group contained children with non-specific abdominal pain, gastrointestinal infections and urinary tract infections presenting to hospital. Abdominal pain, and other pain in the torso, may be a more useful discriminator among children with respiratory infections in primary care. Severe abdominal pain with fever, but absent or minimal respiratory symptoms or signs, has been highlighted in pneumonia before,23
and acute abdominal pain has sometimes led to delayed diagnosis and even laparotomy.24
Pain in one arm was also emphasised in a recent case report.25
Our findings suggest that chest and abdominal pain, referred pain at other sites, and even pain in the legs, may be more common than expected, and may not always be interpreted correctly by clinicians.
The confidential enquiry into child deaths in the UK demonstrated that misinterpretation of the symptoms of serious infection in primary care can have tragic consequences.14
Carefully eliciting the carer's reports of illness history, symptoms of particular concern and the perception that the illness is ‘different’ from previous illnesses may alert the clinician to the possibility of a more serious respiratory infection. Pain in the torso (including the abdomen, back, shoulder and side) may be a common symptom of pneumonia in children aged 3 or more years. Carers of children presenting in primary care with a respiratory infection could be encouraged to re-consult if their child develops pain in the torso or rapid or difficult breathing, as these symptoms were not always recognised as serious by carers in our study. Raising awareness about the importance of these symptoms might also help to address the knowledge gap. Blacklock et al17
cast doubt on the value of carer-reported symptoms in recognising serious respiratory infection in hospitals, but this has not been confirmed in primary care. There is therefore a need for further research into the potential value of the carer's perspective in identifying serious respiratory infection in primary care. A recent study by Haj-Hassan et al26
estimated the diagnostic value of presenting symptoms in primary care for meningococcal disease, the findings of which have important implications for telephone and face-to-face triage. A similar study of the diagnostic value of carer-reported and presenting symptoms in primary care for serious respiratory infection would be extremely valuable.