Optimizing Care for Children with Medical Complexity

By Skyler Kalady, MD, Medical Director of Pediatric Complex Care Clinic at Cleveland Clinic Children’s

When caring for the medically complex child, managing the clinical issues is only part of the challenge. Optimizing their care mandates you also identify and address the psychological, social and functional needs of the patient and his or her family in a coordinated manner.

At Cleveland Clinic Children’s, we opened the Pediatric Complex Care Clinic in May 2015 to serve as the primary care medical home for our patients. We work to consider all factors that could influence the health of children with medical complexity (CMC) in order to maximize their patient experience and provide high quality care in a cost effective way.

This allows us to shift resources to more proactive models and practices that will lessen disruption for families and lower costs —for example, by bolstering outpatient care and thereby reducing the number of emergency department visits and hospitalizations.

Our patient-centered model in tangible terms

At the most basic level, our goal is to provide a patient-centered medical home with coordinated care, and to do it in a cost-effective manner. This includes the purely medical piece: providing high-quality care, including same-day acute care visits to assess patients who become ill in the outpatient setting where their baseline condition is known, the family is comfortable and coordination between other members of their medical team is possible.

It also includes services that are more specific to the CMC population, such as supporting the technology and durable medical equipment needs of our patients with appropriate home health care and therapist referrals. Another area of focus is addressing the stress on families and caregivers through involvement of a dedicated social worker

Navigating the healthcare system for the medically complex child is often a significant challenge for family caregivers and for primary care physicians. The Pediatric Complex Care Clinic aims to address these needs serving as the medical home for our families with dedicated resources, coordination of care and integration of care. Our model — which incorporates nurse, dietician and social worker support — also means that we are supporting each child’s mental health, their school and their social experience so that they can be as functional as possible.

CMC research and future directions

Our research goals seek to examine patient satisfaction, as well as health care utilization and costs, allowing us to fine tune our approaches to optimize care for patients and their families. Initial outcomes from 2015 demonstrate that in our first year, we decreased emergency department visits, hospital admissions and hospital length of stay while appropriately increasing primary care and subspecialty outpatient visits. Patient testimonials demonstrate their high satisfaction with our new care model.

With our continuous improvement model, we continue to learn more about their needs, potential gaps in care and areas for improvement. In the future, we hope to explore opportunities to incorporate telemedicine as a different type of outpatient visit more convenient for patients and their families.

Developing best practices for CMC population

We are also very enthusiastic about the development of care paths to help standardize best practices for the CMC population.

Care paths are best practices to help guide physicians throughout our clinic, as well as in the community and nationally. In these care paths, standard algorithms assist with decision points that are specific to the CMC population, but that often have broader applications.

Current areas of exploration include multidisciplinary efforts to optimize bone health in non-ambulatory patients and menstrual disorders in children with intellectual disability. This brings together multiple disciplines and would allow any pediatrician who has a wheelchair-bound patient to reference the algorithm – and conclude, for instance, that putting the child on a higher dose of vitamin D at an early age, together with labs once a year, may be advisable.

Conclusion

As the number of children nationally with medical complexity continues to grow, the pediatric healthcare system is challenged to develop high-quality models of care to best serve these extraordinary patients. Coordinated care is required for a diverse range of chronic conditions that affect all systems, including metabolic, neurological, cardiac, pulmonary, gastrointestinal and others. Our model acknowledges that medical treatment is just one facet of care — and has worked to create a robust medical home addressing the needs of the entire patient and family.

Feedback on implementation of the Pediatric Complex Care Clinic has been excellent, enrollment is surging and the patient/caregiver experience has been positive. We look forward to continuous improvement with added insights from our family engagement committee.