Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the Am I ON TRAC for Adult Care questionnaire.

AIM: To refine and psychometrically test the Am I ON TRAC for Adult Care questionnaire. BACKGROUND: Inadequate transition to adult care for adolescents with special healthcare needs has been associated with greater risk of treatment non-adherence, lack of medical follow-up, increased morbidity and mortality. Presently, there are no well-validated measures assessing adolescents' readiness to transition from paediatric to adult medical care. DESIGN: Descriptive cross-sectional study. METHODS: The Am I ON TRAC for Adult Care questionnaire was refined to improve the instrument's methodological soundness. A literature review informed the revisions. A convenience sample of 200 adolescents, 12-19 years, was recruited from four outpatient clinics at a paediatric hospital in Western Canada between April-June 2012. Construct validity was evaluated by Exploratory Factory Analysis; concurrent validity was assessed using the Psychosocial Maturity Index. Internal consistency was evaluated by computing Cronbach's alpha estimates. RESULTS: Factor analysis of the knowledge items identified a 14-item unidimensional scale. Knowledge and behaviour sub-scale scores increased with age, with a stronger relationship between knowledge and age. Psychosocial maturity correlated with both sub-scale scores, but had a stronger association with behaviour. Psychosocial maturity and age had a weak but significant correlation suggesting age is a loose proxy for maturity. Only 27% of 17-year olds, but 62% 18-year olds, scored above the behaviour cut-off for transition readiness. CONCLUSION: The revised Am I ON TRAC for Adult Care questionnaire is a psychometrically sound measure that has potential to be used as a readiness assessment tool in both clinical practice and research.

Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative.

The adequate preparation of cystic fibrosis (CF) youth for the transfer from pediatric to adult-based health care services is essential to meet the needs of this changing population. This paper describes the evolution of a transition clinic for patients with CF into a multidimensional quality improvement transition initiative. Three transition interventions (a patient transition clinical pathway; collaboration with the adult clinic; and a tool to measure transfer readiness) were sequentially implemented and evaluated. Each was found to be a valuable addition to a comprehensive transition protocol and today are endorsed as part of transition best practices.

The ON TRAC model for transitional care of adolescents.

This article describes the framework and clinical pathway for ON TRAC (Taking Responsibility for Adolescent/Adult Care), a model of transition care for adolescents with chronic health conditions, as applied to pediatric transplant transition. This model was developed in 1998 at Children's and Women's Health Centre of British Columbia; it provides a multidisciplinary approach to developmentally appropriate transition planning and skill building. The model is youth focused and family centered, and includes stages of transition care on the basis of the developmental stages and capabilities of adolescents. Important considerations for healthcare providers, specific tools for use in clinical settings, and case studies illustrate the use of the ON TRAC model in a pediatric transplant clinic. The ultimate goal of transition in the ON TRAC model is for all adolescents to reach their attainable levels of independence, self-sufficiency, and self-worth while transferring safely and securely into adult healthcare services and adulthood.

Co-Creation With TickiT: Designing and Evaluating a Clinical eHealth Platform for Youth.

BACKGROUND: All youth are susceptible to mental health issues and engaging in risky behavior, and for youth with chronic health conditions, the consequences can be more significant than in their healthy peers. Standardized paper-based questionnaires are recommended by the American Academy of Pediatrics in community practice to screen for health risks. In hospitals, psychosocial screening is traditionally undertaken using the Home Education, Eating, Activities, Drugs, Depression, Sex, Safety (HEEADDSS) interview. However, time constraints and patient/provider discomfort reduce implementation. We report findings from an eHealth initiative undertaken to improve uptake of psychosocial screening among youth. OBJECTIVE: Youth are sophisticated "technology natives." Our objective was to leverage youth's comfort with technology, creating a youth-friendly interactive mobile eHealth psychosocial screening tool, TickiT. Patients enter data into the mobile application prior to a clinician visit. Response data is recorded in a report, which generates alerts for clinicians, shifting the clinical focus from collecting information to focused management. Design goals included improving the patient experience, improving efficiency through electronic patient based data entry, and supporting the collection of aggregated data for research. METHODS: This paper describes the iterative design and evaluation processes undertaken to develop TickiT including co-creation processes, and a pilot study utilizing mixed qualitative and quantitative methods. A collaborative industry/academic partnership engaged stakeholders (youth, health care providers, and administrators) in the co-creation development process. An independent descriptive study conducted in 2 Canadian pediatric teaching hospitals evaluated the feasibility of the platform in both inpatient and ambulatory clinical settings, evaluating both providers and patient responses to the platform. RESULTS: The independent pilot feasibility study included 80 adolescents, 12-18 years, and 38 medical staff-residents, inpatient and outpatient pediatricians, and surgeons. Youth uptake was 99% (79/80), and survey completion 99% (78/79; 90 questions). Youth found it easy to understand (92%, 72/78), easy to use (92%, 72/78), and efficient (80%, 63/79 with completion rate < 10 minutes). Residents were most positive about the application and surgeons were least positive. All inpatient providers obtained new patient information. CONCLUSIONS: Co-creative design methodology with stakeholders was effective for informing design and development processes to leverage effective eHealth opportunities. Continuing stakeholder engagement has further fostered platform development. The platform has the potential to meet IHI Triple Aim goals. Clinical adaptation requires planning, training, and support for health care providers to adjust their practices.