Beyond the Lab: Dr. Villegas’ Mission to Minimize Hospital Stays for Pediatric Kidney Patients

Readmissions are a significant problem, yet little to no research has been conducted within pediatric kidney disease. Dr. Villegas is changing that. In 2023, she was awarded a Young Investigator Research Grant from the National Kidney Foundation. “We learned that one in eight children with kidney disease are readmitted to the hospital 30 days after hospital discharge,” she said. She also discovered that children with kidney disease are more likely to be readmitted to the hospital than children with other conditions such as type 1 diabetes or sickle cell disease.

It is stressful for patients and their caregivers to manage kidney disease because it affects more than the kidneys. “It touches on multiple organ systems--from cardiovascular disease, neurocognitive impairments, to diminished bone health that impacts growth,” Dr. Villegas said. “Our patients have to see many specialists and have many blood tests. One of the most emotionally distressing challenges for my patients includes the rumination of constant and future interactions with the medical system. My patients say, ‘when is my next blood draw? What are the doctors going to tell me? How much school am I going to miss? How much work is my parent going to have to miss?’”

Adding repeated hospitalizations into that mix means even more time spent away from home and out of school, more anxiety and depression, and more psychological and financial strain on families who are already stretched to their limits. Despite the high readmission rate for kids with chronic kidney disease and the impact it has on their families—especially among underserved populations—little is known about the risk factors contributing to these events.

In Philadelphia, Dr. Villegas undertook a quantitative study, using the Pediatric Health Information System (PHIS) database. She examined data collected from more than 50,000 pediatric patients from 49 participating children’s hospitals. This large-scale data revealed several risk factors correlated with readmission—including longer prior hospital stays, more advanced kidney disease (stage 5 CKD), a concurrent mental health diagnosis, language and cultural barriers.

But what the earlier study couldn’t reveal were the personal, on-the-ground experiences of patients and their caregivers, information that will provide Dr. Villegas with the tools to develop a community-focused intervention that can be implemented at multiple sites. To do that, she knew she needed a more focused study, one that encompassed data in the form of caregiver surveys and interviews to identify the real-life challenges they face in managing care for their child—and how those challenges might be causing frequent readmissions.

The new study, which is ongoing, includes patients and caregivers from Connecticut Children’s and Children’s Hospital of Philadelphia. Using two sites gives Dr. Villegas access to two diverse communities, Latino and Black, who face unique social and environmental health challenges. Because language and cultural barriers were identified as a risk factor for readmission, it was important to Dr. Villegas to include non-English-speaking caregivers. “I am Peruvian-American with my primary language being Spanish, so being able to interview and conduct my research in Spanish-speaking populations is very important,” she said. “There needs to be more inclusion for our non-English-speaking patients in research to improve health equity. A recent study published in January 2023 demonstrated that only nine percent of pediatric research articles include non-English-speaking individuals.”

The next step is to conduct more in-depth interviews with caregivers whose children were readmitted. Some of the questions Dr. Villegas wants answers to include: How well did the caregiver understand the patient’s discharge plan? Were there any barriers to getting to their follow-up visits, such as transportation or work schedules? Were there barriers to filling prescriptions or insurance concerns?

The study also will create a community research steering committee comprising caregivers, social workers, pharmacists, nurses and experts in health disparities, nephrology and community-based research. The committee will use the interview results to develop a multidisciplinary discharge navigation program for patients and caregivers. Dr. Villegas envisions a pharmacist-nurse discharge team who will work alongside families to review medications, provide discharge counseling, confirm follow-up appointments, provide a post-hospitalization telephone check-in and more. “Sometimes families leave and don’t know who to call or do not have all the items they need to care for their child, so a close follow-up visit or check-in may be beneficial,” she said.

In addition to receiving a Young Investigator Grant from the National Kidney Foundation, Dr. Villegas is also a John E. Lewy Fund for Children’s Health (JELF) Advocacy Scholar at the American Society of Pediatric Nephrology. During this two-year appointment, she is learning the ins and outs of advocating for healthcare policy changes on both state and national levels. She hopes that findings from her study on readmissions in kids with chronic kidney disease can be used to influence health policy in the future.