Gaps in Care Exist for Some Young Lupus Patients


Young adulthood is a vulnerable time in chronic disease care. Most pediatric patients fail to progress smoothly into adult care.

The years between 18 and 25 can be overwhelming ones. Newly-minted adults must navigate unfamiliar systems and take on responsibilities they'd previously taken for granted. For young adults with chronic illnesses such as lupus, the confusion of this life phase can lead to gaps in care, and ultimately, long-lasting health effects.

Even patients with resources such as education and wealth tend to struggle. A new study in the journal Lupus took a retrospective look at patients transitioning into adult care at Brigham and Women's Hospital in Boston and found that those who made the leap - who were mostly in the moderate- to high-income bracket - still experienced an average gap of 9 months between their final visit with their pediatric provider and their first visit with an adult provider. Nearly half of patients missed at least one scheduled appointment in the 3-year post-transition period in the study.

The study points to the importance of having a formal transition process, said lead author Mary Beth Son, M.D., a rheumatologist at Boston Children's Hospital. And never before have there been more resources for rheumatologists trying to help their patients make the change. From evidence-informed checklists and assessments on to a new American College of Rheumatology initiative to improve the process, the importance of transition is in the spotlight.  

A vulnerable time

Studies on young adulthood point to a vulnerable time in chronic disease care. More and more pediatric patients with chronic disease are surviving into adulthood, said Patience White, M.D, an adult and pediatric rheumatologist at George Washington Medical School and co-project director at the GotTransition Center for Health Care Transition Improvement. Most fail to progress smoothly into adult care. A 2009 study published in Pediatric Rheumatology Online studied 31 patients transferring to adult care at the University of California, San Francisco, half of whom had systemic lupus erythematosus. Of the 16 SLE patients, 7 (44 percent) saw their SLEDAI scores worsen in the year after transition.  [[{"type":"media","view_mode":"media_crop","fid":"48343","attributes":{"alt":"©DragonImages/","class":"media-image media-image-right","id":"media_crop_2792770048416","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"5763","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; line-height: 1.538em; float: right;","title":"©DragonImages/","typeof":"foaf:Image"}}]]

Another of the few transition-focused studies on lupus surveyed 41 patients and found that 22 reported problems with the process. The most commonly cited were loss of insurance and the emotional adjustment of losing a pediatric provider. Both of these problems were associated with poor symptom control (P=0.03) and multiple organ system involvement (p=0.05), the researchers reported in 2015 in Arthritis Care & Research.  

Problems with transition are far from unique to lupus; poor healthcare utilization extends to the broader group of 18- to 25-year-olds, even those without chronic disease. A 2014 Institute of Medicine report on young adults found that while this age group is less likely than any other to utilize health care, they were more likely than any other adult cohort except for adults 65 and older to go to the emergency room.

But for chronic disease patients, problems navigating the system in early adulthood can turn into problems with health for a lifetime, White said. A lupus patient who loses kidney function because of lack of treatment of age 18 has lost that function for life. And using urgent care clinics for health problems carries extra risk in these patients, she said.

"For example, I have had  young adults with lupus who come in because they went to an urgent care clinic, received  sulfa antibiotic for their UTI, and now have a lupus flare. If they had made a connection with an adult physician who cared for their lupus, they might have avoided taking an antibiotic that can cause lupus flares," White said. "The goal is to have a smooth transition from pediatric to adult health care so this young adult receives consistent coordinated  care instead of intermittent care through emergency rooms and urgent care clinics."

Instituting transition

With the topic of transition becoming more prominent, Son and her colleagues were interested in looking at how young adults at Brigham and Women's had made the move into adult care. They conducted a retrospective analysis of 50 patients with systemic lupus erythematosus diagnosed in childhood, 28 of whom had transferred from Boston Children's Hospital. For that subset, the researchers had access to both adult and pediatric charts.

Most patients had moderate disease activity upon transition, with SLEDAI scores around 4 and 5, Son said. But despite the fact that these patients were in need of medical attention, "gaps in care were actually pretty frequent," she said.

More than 70 percent of patients did not return to clinic in the recommended time frame per their provider, or went more than 6 months without seeing their rheumatologist during the first three years post-transition. Forty-six percent missed a scheduled appointment, and of the group who missed appointments, 70 percent missed more than one. Education below a high school level, reports of medication non-adherence and white race were significantly associated with missed appointment in this cohort. Notably, reports of anxiety and depression rose over the transition period, from 10 percent of patients at adult intake to 26 percent three years later. The reason for this rise is unknown, Son said, but could reflect physiological disease processes, the strain of having a chronic disease, or simply a greater amount of comfort and willingness to admit mental health issues to the adult provider.

The study drives home the importance of having a formal transition process, which was not in place at the time of the study, Son said.

The Boston study likely underestimates the problems patients had in transition, White noted, because it captured only people who did make it into adult care, not those who stopped seeing a rheumatologist altogether. In addition, the relatively white, high-income cohort studied was likely better off than the average lupus patient, she said.

Instituting a formal transition process can be easier than many doctors believe, White said. Setting up an expensive separate transition clinic isn't always necessary, she said, but thinking ahead is: Pediatric rheumatologists can start preparing their patients around ages 12 to 14 for transitions to adult care between 18 and 22. lists six core elements of a successful transition: A transition policy to be shared with families; tracking and monitoring youth in transition; transition readiness assessments; transition planning using a plan of care incorporating the needed skills to manage their own care; transfer of care (including communication between the pediatric and adult providers and sharing of medical information); and finally transfer completion, which means checking in with patients on how the process went and the adult provider that the young adult attended the initial visit.

"Transfer is all about communication between the systems, support between the systems and integration into the adult system," White said. 



Son MB, Sergeyenko Y, Guan H, Costenbader K. Disease activity and transition outcomes in a childhood-onset systemic lupus erythematosus cohort.




. Hersh AO, Pang S, Curran ML, Milojevic DS, Scheven EV. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. 

Pediatr Rheumatol Pediatric Rheumatology



. Felsenstein, S., Reiff, A. O. and Ramanathan, A. (2015), Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus. Arthritis Care Res, 67: 1521–1528. 

doi: 10.1002/acr.22611

. Bonnie RJ, Stroud C, Breiner H. Investing in health and well being of young adults. 1st ed. Washington, DC: National Academies Press; 2014. Health Care Transition Resources. website.

. Accessed April 28, 2016. White PH, Ardoin S. Transitioning Wisely: Improving the Connection From Pediatric to Adult Health Care. 

Arthritis & Rheumatology




Related Videos
Connective Tissue Disease Brings Dermatology & Rheumatology Together
© 2024 MJH Life Sciences

All rights reserved.