The ADHERENT Study: Measuring Readiness for the Transition from Pediatric to Adult Urology Care

Research study background

The ADHERENT study is a clinical research project that evaluates healthcare transitional readiness in adolescents and young adults with lifelong urologic conditions. The study looks at how prepared these young patients with complex congenital urologic conditions are to move from pediatric care to adult health care — and how anxious they feel about that change. The transition to adult care can be stressful and confusing. Until now, there has only been limited data — especially in urology — indicating who is ready, who is not and what influences that readiness.

Various assessment tools have been developed across a range of disciplines to help show the importance of preparing patients for transition to adult healthcare. These transitions (from pediatric to adult care) often are guided by a few key questions. For example:

• Is the patient able to order and manage their own medications and medical supplies?
• Can they arrange their own appointments?
• Do they feel comfortable calling their physician?/li>
• Are they able to discuss their condition and their treatment?

These basic parameters can be used as indicators of readiness, but often only provide a surface view of the situation. Taking a deeper look provides a more tangible understanding of what it’s like to walk in a patient’s shoes, to gain an understanding beyond the physical capabilities and understand the natural fears and anxiety these patients feel as they move from pediatric care to an adult healthcare environment. This transition isn’t just about age — there are many variables that come into play when considering a patient’s readiness, including emotional well-being, quality of life, anxiety, confidence and skill development.

By recognizing the significant emotional component in this transition of care, healthcare teams can support teens and young adults with the tools they need to maintain their health and engagement through a successful, albeit challenging, transition.

In the pediatric environment, there is a focus on using validated assessment tools, such as TRAQ to evaluate and determine a patient’s ability to understand and discuss their diagnosis and treatment. Involving them as early as possible in the process helps to establish a skillset that builds confidence and alleviates potential obstacles in the transition into adult care.

The study’s next phase includes qualitative patient interviews aiming to capture patient perspectives on effectiveness and patient-centered transition strategies to inform development of more comprehensive transition programs.

Clinical implications

The study suggests age alone should not drive the transition from pediatric to adult care, but that readiness varies by individual. Emotional screening should be examined along with skill-based readiness assessments.

Supporting this emotional well-being may enable patients to better assume responsibility for their care and successfully engage with adult providers in adult care environments. Transition programs would ideally exist within all pediatric care (where patients will require adult care) and should be:

• Individualized
• Interdisciplinary
• Supported by collaboration across specialists, psychosocial teams and community resources

While only around 15% of pediatric surgery practices have a formalized transition program, care teams can begin conversations early, build partnerships with adult providers, and learn from institutions that have already established this practice.

Other barriers in successful transitions include insurance and coverage complications, care coordination changes and socioeconomic barriers (including transportation, timing and access).

Relevance to future research

The study’s next phase includes qualitative patient interviews aiming to capture patient perspectives on effectiveness and patient-centered transition strategies to inform development of more comprehensive transition programs.