Self-management and transition among adolescents/young adults with chronic or end-stage kidney disease.

BACKGROUND: Adolescents/young adults (AYA) with chronic kidney disease (CKD) or end-stage kidney disease (ESKD) are at risk for poor health outcomes related to self-management. To improve their health and quality of life, AYA must build self-management (for those in the pediatric- and adult-focused setting) and/or health care transition (HCT) skills (for those in the pediatric setting). METHODS: Self-management and/or HCT encompass a variety of domains that must be tailored to each individual. Annual assessments should begin between the ages of 12 and 14 and continue in the adult-focused setting until patients have achieved demonstrated self-management and/or HCT skills mastery. These assessments will guide interventions that are congruent in terms of literacy, development and culture. Facilitation of this process from the perspective of both the pediatric and the adult health-care systems is described. CONCLUSIONS: Deficiencies and barriers to self-management and/or HCT for AYA with ESKD remain. There is no consensus on the definition of successful HCT preparation, with few tools to assess transition readiness and/or self-management. It is important for health providers to promote the self-management and/or health-care transition skills of AYA with ESKD. Customization of these activities and involvement of the whole family will contribute towards better health-related quality of life and patient outcomes.

A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale.

OBJECTIVE: To describe the development of the University of North Carolina (UNC) TR(x)ANSITION Scale that measures the health-care transition and self-management skills by youth with chronic health conditions. METHODS: Item and scale development of the UNC TR(x)ANSITION Scale was informed by two theoretical models, available literature, and expert opinion interviews and feedback from youth with chronic conditions, their parents, and interdisciplinary collaboration. Through an iterative process, three versions of the scale were piloted on a total of 185 adolescents and emerging adults with different chronic illnesses. This clinically administered scale relies on a semi-structured interview format of the patient and does not rely solely on patient report, but is verified with information from the medical record to validate responses. RESULTS: Following the item development and the three iterations of the scale, version 3 was examined in a more intensive fashion. The current version of the UNC TR(x)ANSITION Scale comprises 33 items scattered across the following 10 domains: Type of illness, Rx=medications, Adherence, Nutrition, Self-management, Informed-reproduction, Trade/school, Insurance, Ongoing support, and New health providers. It requires approximately 7-8 min to administer. With a sample of 128 adolescents and young adults, ranging in age from 12 to 20, inter-rater reliability was strong (r = 0.71) and item-total correlation scores were moderate to high. Content and construct validity were satisfactory, and the overall score was sensitive to advancing age. The univariate linear regression yielded a beta coefficient of 1.08 (p < 0.0001), indicating that the total score increased with advancing age. Specifically, there was about a one point increase in the total score for each year of age. CONCLUSION: The UNC TR(x)ANSITION Scale is a disease-neutral tool that can be used in the clinical setting. Initial findings suggest that it is a reliable and valid tool that has the potential to measure health-care transition skill mastery and knowledge in a multidimensional fashion.

Invited manuscript poster on renal-related education American Society of Nephrology, Nov. 16-21, 2010. Adolescents with chronic kidney disease and their need for online peer mentoring: a qualitative investigation of social support and healthcare transition.

Adolescents with chronic kidney disease (CKD) tend to be isolated from peers who also have CKD, develop non-adherent behavior with treatment recommendations, and consequently are at higher risk for poor health outcomes such as transplant rejection. At the same time, patients in this age group tend to be technologically savvy and well-versed in using Internet-based communication tools to connect with other people. In this study, we conducted semi-structured interviews among adolescents with CKD to assess their information needs and their interest in using a CKD-oriented peer-mentoring website that we are developing, kTalk.org. We interviewed 17 adolescents with CKD, ages 14-18 years old, to learn about (1) any concerns regarding transition from pediatric to adult care teams; and (2) their interest in using the Internet as a source for disease-related information and as a social networking tool for finding and interacting with their peers. The interviews were digitally recorded, transcribed, and qualitatively analyzed. Results showed that (1) the adolescent participants are commonly concerned about transitioning to an adult clinic; (2) they are isolated from peers with the same medical condition who are of similar age; (3) they are frequent Facebook users and are highly interested in exploring the possibility of using an online community website, such as kTalk.org, to discover and communicate with peers and peer mentors; and (4) there exist divergent opinions regarding if an online community of adolescent CKD patients should be open to the public.