More than one in 10 children with medical complexity had an incident reported by home care agency staff, according to a multi-state study recently published in JAMA Network Open . Half of reported events were safety related and a quarter caused harm to the child.
“Children with medical complexity often require complicated home care regimens, such as gastrostomy tubes and invasive ventilation, but we have not really known how often healthcare safety issues might be happening at home, which makes it hard to track and make improvements to this type of care,” said lead author Carolyn Foster, MD, MS , Director of the Stanley Manne Children's Research Institute’s Health@Home Initiative at Ann & Robert H. Lurie Children’s Hospital of Chicago, and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “Our study is a first step towards tracking safety event rates so that we can start identifying patterns and then develop interventions to prevent their occurrence.”
Children with medical complexity are a growing population of medically fragile patients (~3 million) with multisystem conditions who receive long-term care at home. They increasingly require administration of dozens of medications and rely on implanted devices that need frequent adjustment and maintenance for life-sustaining treatment. These children can also have functional impairments that place them at risk for falls and bed sores.
Dr. Foster and colleagues analyzed data from staff incident reports from a national pediatric home healthcare agency with sites in 11 American states. The study included 2,901 patients under 21 years of age, who received home care from September 2022 to September 2023. Six-hundred and eighty-seven incident reports were filed for nearly 12% of children.
Researchers found that errors most often involved medications (38.8%) and implanted devices (32.7%). Harmful errors were most frequently related to non-pressure skin injuries (26.8%) and falls (17.9%). About half of all errors (47.8%) required additional monitoring and 16.2% required emergency care.
In the study, children with the highest level of medical complexity who received nursing-level care were more likely to have a patient safety event. Children with invasive home ventilation were particularly susceptible to safety events, compared to children with other types of implanted medical technology.
“Our findings call for targeted interventions to keep these highly vulnerable children safe,” said Dr. Foster. “We also need to integrate family caregivers into reporting events and involve them in developing interventions to improve safety as the leaders, if you will, within the home itself. At the policy level, children need to be included in national reporting of home care events to ensure accountability and detailed training standards for pediatric nursing is happening for children just like with adults.”
The study was conducted under the Patient Safety Learning Lab funded under grant number 1R18HS029638-01 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services (HHS). This Learning Lab brought together experts at Lurie Children’s, Vanderbilt University Medical Center, Boston Children’s Hospital, and various home care agencies and family experts to address the care of children in the home using a system-level approach.
Dr. Foster is the Yaeger Family Research Scholar at Lurie Children’s.
Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report .
JAMA Network Open