Patients who visited neurofibromatosis specialists received better guided care

Key takeaways:

• Patients who visited a specialized clinic received more guideline-concordant evaluations.
• White patients were more likely than patients from underrepresented groups to receive guideline-concordant care.

PHILADELPHIA — Patients who availed themselves of specialized care for neurofibromatosis received more guideline-concordant care than other patients, with differences found along racial and economic lines, per a poster presentation.

“In this study, we were looking at delivery of care for neurofibromatosis type 1,” Vanessa L. Merker, PhD, an assistant professor of neurology at Harvard Medical School, told Healio at the American Neurological Association annual meeting. “There are clinical care guidelines ... saying what kind of care is needed, but no one had actually assessed how much is actually being implemented.”

Merker and colleagues assessed the extent to which neurofibromatosis care guidelines have been implemented in the U.S. as well as to analyze the sociodemographic predictors of receiving guideline-concordant care.

They conducted an electronic survey in May 2021, focusing on U.S.-based NF1 patients and parents/caregivers enrolled in the Children’s Tumor Foundation Neurofibromatosis Registry, yielding 322 responses (4.6% response rate; 160 adults and 162 parent/caregivers; 58% female; 78% white). Topics of the survey included demographics, location and specialty of NF care providers, self-reports of guideline-concordant clinical care including blood pressure measurement, skin exam and scoliosis screening in children and adults; tracking of development, developmental milestone school progress in children; family planning education; and information on signs and symptoms of cancer for adults.

Results showed that survey respondents who visited a specialized NF1 clinic within the past 3 years (β = 0.86 for children; β = 0.76 for adults) or who had an appointment with their NF1 care provider in the past year (β = 1.62 for children; β = 1.23 for adults) received more guideline-concordant evaluations.

Among adults, white patients were more likely than Black patients (β = 0.95) and patients from other underrepresented groups (β = 0.70) to receive guideline-concordant care, as were adults with commercial insurance compared with those who had Medicaid (β = 1.096) and adults who saw a neurologist for their NF1 care (β = 0.48).

Data additionally showed 53.6% of children and 25.2% of adults received at least four out of the five recommended age-appropriate health services.

“With adult care, there were a lot more disparities and it shows we need to work on this,” Merker told Healio.