Taking steps to bridge the pediatric-to-adult care divide
How a large Texas children’s system Is re-engineering transitions for young patients who need the best possible continuity of care.
When a teenager with congenital heart disease, cystic fibrosis or Type 1 diabetes “ages out” of pediatrics, the stakes of a smooth hand-off to adult specialists are enormous. Missed appointments, medication lapses or gaps in insurance coverage can quickly undo years of coordinated pediatric care.
Yet, inside a sprawling, multi-campus pediatric system like ours in Texas — where a single patient might be followed by ten or more subspecialties — clinicians often lacked a common playbook for when and how to start transition discussions. Documentation lived in narrative notes, not discrete data fields, and adult partners struggled to see the whole story.
Two years ago, we made an intentional choice to treat health care transition (HCT) as a clinical quality program, not as a courtesy referral. What followed was a system-wide redesign that produced four EHR-embedded tools, a cadre of physician champions and the first reliable data set we have ever had on adolescent patients who remain with us past age 19.
Good intentions, inconsistent execution
Our audit of patients older than 19 still receiving pediatric services was eye-opening. Identifying them by date of birth took seconds; understanding why they had not transitioned was far harder.
Some truly needed pediatric expertise into adulthood, but many simply had no documented transition plan. Providers were unsure when to raise the topic, and families received mixed messages about insurance coverage or adult-care readiness. Overall, we identified three gaps.
Workflow clarity. There was no consensus on when transition planning should begin for each specialty.
Documentation structure. The use of free-text notes masked where a patient sat on the readiness spectrum.
Data visibility. Leaders could not anticipate capacity constraints because transition status was invisible in dashboards.
Building the four-tool HCT framework
We convened seven physician champions across cardiology, pulmonology, endocrinology, gastroenterology, hematology, neurology and primary care, plus two adult-medicine colleagues who routinely accept complex pediatric graduates. Together with transition-of-care nurses and informaticists, we designed an integrated toolkit that fires at the right moment in a clinician’s workflow.
Here are the tools that were developed, their purpose and key features.
Transition readiness assessment. This gauges the patient and caregiver understanding of adult-care responsibilities, such as medication refills, appointment scheduling and insurance literacy. Key features include age-based logic that trigger the survey and auto-scores that feed the plan.
Transition planning note. This documents the specialty-specific plan, targeting the hand-off age, required adult subspecialists and psychosocial needs. Key features include discrete fields that map to analytics and offer links to disease-specific education.
Transfer preparation checklist. This ensures pre-transfer tasks, such as records are sent, prescriptions aligned and guardianship issues resolved. A checklist shows progress displays in ambulatory schedule view.
Transfer summary. This enables auto-population of information, providing a concise clinical synopsis to the accepting adult provider. It provides an API push to external electronic health records, as well as a PDF version for families.
Each element borrows the IHI “right information, right person, right time” mantra. Clinicians who open an adolescent chart now see a status ribbon — green (on track), yellow (needs action) or red (past due).
Early outcomes and learnings
Six months after go-live, 83 percent of eligible patients had a documented readiness score; before, that number was effectively zero. Among cardiology patients, the median age at first transition conversation fell from 17.8 to 15.9 years, giving families a two-year head start.
And because readiness scores are discrete, our data analysts surfaced a pattern we had long suspected – adolescents with neurodevelopmental disorders score lowest on self-management questions, prompting us to co-design additional occupational-therapy interventions.
Capacity insights have been equally powerful. By projecting upcoming adult transfers, we freed 4 percent of subspecialty appointment slots for younger, newly referred children — capacity we previously tried to create with costly weekend clinics.
Perhaps most gratifying, families report feeling invited into the process rather than dismissed when they turn 18. One mother of a cystic fibrosis patient told us, “Seeing the checklist made it real, but also showed us there was a safety net.”
Institutionalizing best practices
The granular data now supports a formal transition to adult care policy, ratified by our medical board this spring. The policy sets default transfer ages by specialty yet enables documented exceptions — such as the absence of an adult congenital pulmonologist within 200 miles — so we honor clinical reality, not bureaucracy.
Leadership dashboards slice transition metrics by clinic, provider, diagnosis and social-determinant risk scores. When a service line lags, champions can pinpoint whether the barrier is provider education, family readiness or adult-network adequacy and intervene quickly.
Our roadmap for the coming year includes:
Specialty-specific enhancements. Oncology survivorship and solid-organ-transplant patients need tailored elements (such as fertility counseling and lifelong immunosuppression monitoring).
Business-planning levers. Using transition throughput data in negotiations with payers to secure rates that recognize pediatric systems’ unique role in preparing adults with lifelong conditions.
Regional knowledge-sharing. Partnering with safety-net hospitals to adopt the toolset, aiming for a common longitudinal dataset across Texas.
We also plan to publish patient-reported outcome measures at six and 12 months post-transfer, closing the feedback loop on whether our process truly delivers healthier young adults.
Why this matters
No matter your EHR vendor, capturing transition status in discrete fields is low-hanging fruit that unlocks capacity, quality and revenue insights. But technology alone is not the answer. Success hinges on the following factors.
Physician ownership. Clinical champions validate that the toolset augments, not clutters, documentation.
Iterative design. Release small, measure, refine. Our version-two build cut charting time by 30 seconds per visit.
Adult-care partnership. Engage the receiving providers early, because their input ensures the transfer summary answers the questions they actually have. As pediatric survival rates climb and chronic conditions span a lifetime, pediatric systems can no longer afford an ad-hoc approach to transition. Our experience shows that a thoughtful blend of workflow-aware digital tools, data transparency and clinician leadership transforms transition from an afterthought into a strategic asset that benefits patients, families and the enterprise alike.
Dr. Angela Kaiser is president of Kaiser Consulting, which partners with healthcare organizations to achieve clinical workflow optimization, technology innovation, data operationalization and effective care management and clinical analytics (population health) programs.