Jaundice caused by high levels of the chemical bilirubin in blood affects approximately 60% of full-term babies in the first week of life. In extreme cases, jaundice in newborn babies can lead to seizures, cerebral palsy and developmental delay. So why are most babies not receiving early follow-up visits to ensure that jaundice isn’t missed?
The condition is easy to detect, thanks in part to the tell-tale yellow hue that gives jaundice its name, as well as a simple blood test. And it’s also easy to treat, usually with admission to hospital for light therapy using incubators or special fibre optic blankets and in some cases, extra fluids. For many babies, the level of bilirubin is not high enough to require treatment and will be flushed out normally. However, for about 2% of newborns, this condition can lead to bilirubin toxicity that can damage the brain and other organs if untreated.
All babies born in Ontario are supposed to be assessed for jaundice following birth. The Canadian Paediatric Society published guidelines in 2007 recommending that all babies be tested during the first 25 to 72 hours of life, as bilirubin levels take time to build up. For babies discharged from the hospital within a day of being born, the guidelines recommend that they be reviewed for jaundice through a home or office visit with a midwife, nurse or physician.
Frustratingly, despite the relative simplicity of the diagnosis and treatment, our recent study showed that this follow-up assessment usually gets skipped. With the introduction of the 2007 guidelines, rates of adherence to the early follow-up visit went up only marginally, from 30% in 2003 to a still-disappointing 35% in 2011.
But hidden inside that statistic lies an even more discouraging story – one that ties into issues of socioeconomic barriers and unequal access to care.
Universal jaundice screening recommendations might not be that universal
We set out in our study to see how factors like poverty or education might influence access to jaundice screening in Ontario.
What we found was that most of that 5% improvement in early follow-up visits was due to increased rates for infants living in higher-income neighbourhoods. Meanwhile, babies born to mothers at the lowest income levels saw no benefit from the universal guidelines, with follow-up rates that remained flat.
We think that the reasons for this gap likely include subtle barriers to care that might include basic issues like transportation to the doctor’s office. Another reason could be that (as our study and others have shown) high income families are more likely to have a pediatrician for their children – and pediatricians may be more attuned to the jaundice screening recommendation than family doctors.
So despite the best of policy intentions, the access gap between low-income and high-income families actually widened after the introduction of universal guidelines for bilirubin screening.
Our findings are consistent with previous Ontario research that showed that efforts to increase access to MRIs overall also widened the gap between people in lower-income neighbourhoods and those in high-income neighbourhoods. Although lower-income patients did experience modest improvements in access, patients in high income neighbourhoods saw an even greater increase, regardless of whether they lived in a rural or urban setting. The evidence is mounting that when we implement universal guidelines without taking into account the realities of socioeconomic disparities, we may see overall improvements while overlooking worsened inequity. In our universal health system, universal guidelines can widen the gulf between have- and have-nots.
What can we do to increase access to jaundice screening?
Our study showed that we have far to go to ensure universal access to jaundice screening and timely follow up for all babies born in Ontario. Given the unequal access to care, we suggest that it is important that our government fund targeted outreach for early newborn follow-up in low-performing areas. Steps might include providing transportation or child care support, increasing home visits by midwives or public health nurses and providing culturally sensitive outreach. It is also important that primary care physicians are engaged in ensuring that their patients have access to timely follow up, particularly on weekends and holidays, which our research found to be a major risk factor for missed follow-up.
But we also see wider implications from this work and other studies that go beyond newborn health. In Ontario, the new Patients First strategy has a goal of improving the coordination of care between hospitals, primary care and public health, with a particular emphasis on improving health equity. For these goals to be realized, it is vital that we identify and address the particular obstacles faced by low-income families, and evaluate the impact of new initiatives on health equity. A health equity lens should be a mandatory requirement for all evaluations of health care programmes and policies in Ontario, and more widely across Canada.
Time and again, the evidence shows us that without measures that take socioeconomic realities into account, equality is not the same thing as equity. Universal guidelines are all too often universal in name only.