Respiratory illness: which symptoms matter most to you?

Is it COVID-19 or the flu? RSV, just a cold ‒ or maybe something else? In the early hours of an illness, parents rarely know for sure what is causing their child to be sick. The immediate question for parents and other caregivers is whether to care for the child at home or to seek medical attention.

The symptoms of many viral illnesses can be similar: a cough, a runny nose, perhaps a temperature. But which ones matter most to parents? And are these the same as the symptoms that worry clinicians?

Parents, paediatricians, advocates for young people, and others have come together to design the Symptom Survey, a questionnaire that aims to understand what matters to patients, parents and carers of people experiencing influenza-like illness (ILI). The initiative, originally conceived by the Vaccine Safety Initiative, is part of the EU-backed ImmuHubs project.

Impact on quality of life

Dr Barbara Rath, a paediatrician and infectious disease expert, explains why some symptoms impact children and parents but are not overly concerning to clinicians, while others might worry a doctor but be lower priority for parents.

‘A parent may report that a child has been coughing all night, resulting in sleep deficit for the kid and family, but that does not worry the emergency physician as much when they assess whether to send a patient home or admit them to hospital,’ she says. ‘On the other hand, the respiratory rate or oxygen saturation measurement may be more important to the healthcare professional.’

However, knowing the concerns of patients and parents can help to improve how care is delivered. It can also deepen understanding of what motivates people to seek intervention, and for which illnesses parents would value vaccination.

‘As healthcare professionals may have a very different understanding of disease severity and impact than the patient or caregivers, a patient’s worries and concerns may be overlooked or remain unaddressed at the end of a medical encounter,’ says Dr Rath. ‘If we really want to move towards patient-centred care, we need to be cognisant of that discrepancy.’

The survey asks participants to grade and compare a range of signs and symptoms rather than focusing on individual viruses or diseases, given the difficulty people have discriminating one respiratory illness from another.

‘When patients first get sick, they do not know whether they are dealing with COVID, flu, RSV or any of the other common viral infections. What bothers them are the symptoms,’ Dr Rath says. ‘We think that a complete assessment of signs and symptoms needs to be part of any evaluation of patients with flu-like illness, followed by vaccine consultation, testing, and treatment specific to the type of viral infection.’

The outcomes of the study, which is ongoing, will be published and could be used to update clinical guidelines and training for health professionals, including the SEKI education course for doctors and scientists. It could also inform the work of policymakers, regulators and National Immunisation Technical Advisory Groups (NITAGs).

Results: sneak preview

The pilot phase of the Symptom Survey gives some early insights, based on 149 responses. The majority of respondents are women, 80% were caregivers to a child and 30% were caregivers to an elderly relative.

Important symptoms

• The level of symptom control matters. Symptoms that are considered ‘out of control’ are considered most important
• Symptoms are considered more important if present in a child or elderly person (compared to a midlife adult)
• Symptoms of the common cold are viewed as less important

Disruptive symptoms

• Vomiting, diarrhoea and fever are considered most disruptive
• Cough is considered most important in children and the elderly
• Headaches are most disruptive to adults
• The resolution of fever and the ability to keep food down are seen as key signs of recovery; upper-respiratory symptoms are viewed as less critical.

Vaccines vs medicines

• The symptoms viewed as important or disruptive are the ones parents would like to prevent through vaccination
• The symptoms viewed as less important or disruptive are the ones people prefer to manage using medicines.

Mobilising parents and citizens  

The European Parents Association (EPA) is leading the ImmuHubs work on the Symptom Survey, alongside Families Fighting Flu, the Active Citizenship Network, Make Mothers Matter, ThinkYoung, and the European Academy of Paediatrics.

Arja Krauchberg of the EPA says the latest version of the survey tools is a chatbot which makes it easier for the public to use. ‘We hope to learn more about what symptoms people would like to be treated and which ones they would most want to protect against,’ she says. ‘The ultimate goal is to increase health literacy throughout the life-course and among people in risk groups.’

The EPA and other participating organisations are encouraging their members and the wider public to engage with the survey. The bigger and broader the response, the better. Michele Slafkosky, Executive Director of Families Fighting Flu (FFF), says the results will improve communication between clinicians and the people they care for.

‘It will change how healthcare professionals speak to patients, making them more mindful of people’s needs,’ she says. ‘Patients and families trust providers, but there are also things that only they can know.’ Ms Slafkosky told Vaccines Today she hopes greater awareness and mutual understanding will reduce hospitalisation and death linked to flu and other respiratory illnesses than can be prevented through vaccination.