• Adolescents with Chronic Kidney Disease: Transition to Adult Care Program Development

      Hill, Tamara (2017)
      Problem: Increasing numbers of children with chronic conditions, including those with Chronic Kidney Disease (CKD) survive into adulthood (Watson, 2012; Ferris, Gipson, Kimmel and Eggers, 2006). A diagnosis of CKD also includes many comorbidities in a vulnerable population. Without a structured approach, poorly managed healthcare transition (HCT) from pediatric-to adult-focused care, can be fatal or have consequences such as losing a kidney transplant. Recognizing the barriers to HCT emphasizes the need for a collaborative effort by pediatric and adult-focused providers. HCT is complex and demanding. Sudden changes in provider aspects and health care system processes may be disorientating to pediatric patients accustomed to intense and involved care all of their lives (Samuel et al., 2014). This, along with the increase in survival to adulthood, increases the need to have systematic processes in place to successfully transition these youth to adult care services. Purpose: The purpose of this scholarly project was to develop a structured HCT preparation program for adolescents with CKD while maintaining their trust and assuring continued medical care. Methods: This quality improvement project, completed in a large Mid-Atlantic urban outpatient nephrology clinic, aimed to successfully transition adolescent CKD patients to adult health care and involved four steps. The first was recruitment of participants, with specific criteria including English speaking, ages 15-23 and no hospitalizations in the past 3 months. The second phase was evaluation of ability to participate with the use of a readiness assessment; a formal validated scale, created by the National Alliance to Advance Adolescent Health (NAAAH, 2016 ) and development of an individualized, interprofessional treatment plan. Lastly, application of the transition plan and patient evaluation involved the use of a formal, published teaching tool, called TRxANSITION (Ferris, 2012) which includes 7 domains of care. The UNC TRxANSITION Scale™ inter-rater reliability is strong (r= 0.71) and item-total correlation scores were moderate to high (Ferris et al, 2012). BUN and creatinine levels were also monitored during the program change to assure stability. Success was noted by full transition from pediatric to adult care, indicated by keeping the first independent appointment with the adult provider. Results: Nineteen participants were enrolled; ages between 16 and 27 years; 54% females; 75% with CKD and 26% were renal transplant recipients. Patient responses to the TRxANSITION Scale variables were evaluated using the Pearson Correlation coefficient. Sub-scales that had the highest correlation coefficients with the total score and with a strong positive relationship to their domain were self- management (N=19, r=0.91, p<0.01, two-tailed), insurance (N=19, r=0.83, p<0.01, two-tailed) and school (N=19, r= 0.82, p<0.01, two-tailed). During the program development process, four participants successfully transitioned from pediatric to adult nephrology services without incident, while others continued with preparation for transition. Conclusion: Purposeful HCT preparation provides youth with ongoing access to subspecialist care, promotes competence in disease management, fosters independence, social, and emotional development through teaching self-advocacy and communication skills, and allows for a sense of security for support of long-term health care planning and life goals.