Monash Health research has uncovered the power of caregiver concern in predicting serious illness in patients.
It is now one of the vital signs that will be monitored at Monash Health hospitals.
Mum of premature baby Ollie* presented to Monash Medical Centre’s emergency department because she had a ‘bad feeling’, even though Ollie’s symptoms were mild – slightly unwell, a runny nose and reduced feeds.
Ollie’s mum knew something was wrong with her baby, and triage and treating teams listened and responded to her concerns.
Shortly after their arrival, Ollie’s condition quickly deteriorated, and he decompensated with respiratory failure due to viral chest sepsis, requiring extensive resuscitation.
He was quickly attended to and required extensive resuscitation. The boy fully recovered and was able to be discharged 10 days later.
Paediatric Emergency Physician and Emergency Services Quality Lead Dr Erin Mills said if his mother hadn’t listened to her intuition and acted on the bad feeling she had, her baby would likely not be with us today.
‘While the baby received prompt and appropriate medical care and fully recovered, this case serves as a stark reminder of the importance of listening to patients and their families’ concerns about their health.
‘Patients and families are best placed to understand and recognise subtle changes in their loved ones and selves that medical professionals may miss.
‘In this case, listening and acting upon that concern saved this baby’s life,’ she said.
Dr Mills, who is also an adjunct senior lecturer at Monash University, said delayed recognition of clinical deterioration is a common theme in serious adverse patient safety events at health services around the world.
Since 2020, Monash Health Paediatrics has shifted the responsibility from patients and families having to articulate their concerns with clinical staff, to clinicians to proactively seek and respond to patient or caregiver concerns.
This initiative formed the basis of a study that found a significant association between caregiver concerns for clinical deterioration and critical illness in hospitalised children.
Dr Mills is the lead investigator in the study published in The Lancet Child and Adolescent Health.
The research, which spanned over 26 months from November 2020 to December 2022, involved 73,845 emergency department presentations of children under 18 years old.
Caregivers were asked if they were worried their child was getting worse, and their responses were documented alongside vital signs.
The findings showed that caregiver concern was more strongly associated with intensive care unit (ICU) admission than any abnormal vital sign.
Specifically, the study found that 6.9% of children with caregiver concerns were admitted to the ICU, compared to 1.8% of those without such concerns.
Additionally, 1.1% of children with caregiver concerns required mechanical ventilation, compared to 0.2% without concerns.
The researchers emphasised the need for healthcare systems to incorporate proactive assessment of caregiver concerns into routine care processes.
‘Parents and caregivers are a valuable resource in recognising early signs of deterioration,’ said Dr Mills.
‘Our findings suggest that their concerns should be taken seriously and integrated into hospital systems used to detect deterioration in paediatric patients.’
The study also highlighted the limitations of current paediatric early warning systems, which rely heavily on vital signs to detect deterioration.
The researchers found that in 19% of cases where both caregiver concern and abnormal vital signs were present, the concern was documented before the vital signs became abnormal, suggesting that caregivers may identify deterioration earlier than clinicians.
The study’s authors call for further research to validate these findings in other settings and to explore the impact of caregiver concerns on patient outcomes.
They also recommend that hospitals implement standardised monitoring systems that include caregiver input to improve early detection and management of critically ill children.
This study underscores the critical role of caregivers in children’s healthcare and the need for healthcare systems to support their involvement in clinical care.
Dr Mills said as hospitals become increasingly busy, leveraging caregiver concerns could help prioritise high-risk patients for timely medical review and intervention.
Congratulations to Dr Mills and her team for leading the way in improving clinicians’ responses to patients’, families’, and caregivers’ concerns about deterioration.
*The patient’s name has been changed to protect his privacy.