An opportunity for other organizations to support transition
The researchers noted that education did not necessarily need to come only from rheumatologists. Other health care professionals, including nurses and social workers, could help young patients develop skills as well.
“They said they’re also open to talking to other people, but they want their rheumatologist to lead the whole process,” Dr. Wells said. While reimbursement gaps may have presented a barrier in the past, Dr. Wells said that current billing codes have removed that obstacle, allowing physicians to bill for discussing transition skills and care.
“Largely, it’s a time issue,” Dr. Wells said. “Rheumatologists are going to tell patients first about their disease, ask how their medication is working and how their health is. Then, if we have time, we’ll cover the transition pieces, and what it boils down to is that they just don’t have time.”
The respondents indicated an interest in technology that can help their education and transition, such as patient portals, telehealth, and smartphone apps.
While 66.4% of respondents said they would attend an in-person health care appointment to learn skills for transitioning to adult care, 74.5% would attend a telehealth appointment, and 77.2% would complete a structured program within a patient portal.
Dr. Wells said she doesn’t see many of the health care system pressures easing up to allow rheumatologists more time for transition care, but she sees an opportunity for organizations, such as the Arthritis Foundation or Lupus Foundation of America, to step in and help.
“It is a matter of being creative and that, ultimately, is the barrier: Whose job is it to make it happen?” she said. “That’s where some other groups are going to need to be advocates.”
Another notable set of findings from this research was the need for young patients’ access to mental health and sexual/reproductive health services. Just over two-thirds of respondents preferred to discuss these topics with their rheumatology team, but only 59.1% felt comfortable starting the conversation about mental health, and only 47.4% felt comfortable broaching the topic of reproductive/sexual health. Even more patients preferred discussing use of drugs and alcohol with their health care team (71.5%), but more patients also felt comfortable initiating that discussion (72.2%).
“It may be that somebody who’s trained to address those issues, especially the mental health piece, may be more appropriate to have that role, and that’s part of the transition, too, these other larger life issues,” Dr. Wells said. “One of the benefits of going to an adult rheumatologist is that they are the most knowledgeable and prepared to help you with those topics.”
None of the individuals quoted in this story had any disclosures to report.