Enhancing Interventions to Impact Healthcare Transition Readiness and Preparation of HIV-Infected Young Adults

Introduction: Human immunodeficiency virus also known as HIV, is now considered a chronic disease and many people are living longer as a result of the use of antiretroviral therapy (ART) (Centers of Disease Control, 2016a). Due to this improved life expectancy, preparation for transition of HIV positive adolescents and young adults (AYA) from pediatric/adolescent health care to adult health care becomes a significant priority as there are more than 25,000 young people ages 13 to 24 years living with HIV who will most likely need to be transitioned to adult HIV or Infectious Disease health care providers within the next 10 years (Dowshen & D’Angelo, 2011). However, adolescents and young adults are not prepared to transition nor manage their own health care and need assistance in developing critical skills necessary for independence, transition and their success in treatment management (McManus et al., 2015). The American Academy of Pediatrics (AAP) recommends setting transition goals with the patient, using a continual assessment of transition readiness with validated measures of transition related skills and adapting/guiding interventions to assist adolescents in preparing for transition (Wood et al., 2014). Despite these recommendations, many practices do not comprehensively assess health care transition readiness skills on a continual basis nor incorporate measured assessments of transition readiness into routine care (Wood et al., 2014; Sharma, O’Hare, Antonelli, & Sawicki, 2014).

Due to the lack of a formal transition readiness assessment with validated tools, there is not a defined process of tracking and evaluating transition readiness and often not enough time to ensure retention of acquired skills or knowledge which ultimately may impact the health and future of young adults with HIV who transition their healthcare from a HIV clinic into another clinical setting. The practice question is: In HIV positive adolescents and young adults, does the use of a Transition Readiness Assessment Questionnaire (TRAQ), a validated transition readiness assessment tool, enhance health care provider interventions and follow up to improve acquisition of skills and knowledge necessary for transition compared to not using TRAQ?

Review of Evidence: In general, principles for transitioning include creating a formal policy of transition to define the goals and timeline of transition for AYA, developing an individualized approach including creating a portable medical summary or EHR ensuring understanding of the chronic illness, providing AYA with critical skills such as maintaining health insurance, independently refilling prescriptions, and adhering to medications and appointments, monitoring the development of skills, tracking their progress, addressing barriers and modifying interventions as indicated (New York State Department of Health AIDS Institute, 2016; Committee on Pediatric AIDS, 2013). However, there is limited information about how to determine when adolescents are ready and competent enough to successfully transition their healthcare (Moynihan et al., 2015; Schwartz et al., 2014; Ferris et al., 2015). There is considerable variability among institutions regarding transition practices especially in regards to addressing comprehensive care needs related to transition such as medical, psychosocial and financial needs in addition to limited descriptions of tools and processes used for transition (Committee on Pediatric AIDS, 2013). Health care transition is a purposeful, planned strategy of various interventions to assist adolescents and young adults (AYA) with chronic conditions transfer their health care from pediatric to adult care settings (American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011; Zhang, Ho & Kennedy, 2014; Maturo et al., 2011). Transition includes assessing and monitoring skill development and modifying interventions as needed (New York State Department of Health AIDS Institute, 2016; Committee on Pediatric AIDS, 2013). The use of validated tools to measure transition readiness can assist the patient and provider to develop and evaluate skills, set goals and guide interventions to better prepare adolescents for transition and can also be a catalyst for development of evidence based interventions to support a successful health care transition (Wood et al., 2014; McManus et al., 2015).

The middle range transition nursing theory provides a conceptual framework which emphasizes the complexity of transition and each patient’s need for assessment, identification of barriers/facilitators to transition and development of specific interventions to promote mastery of skills and knowledge related to transition (Meleis et al., 2000). Nurses have an opportunity to identify types, patterns and properties of transition their patients are experiencing, assess anything that may inhibit or facilitate that transition such as stigma related to their disease, acceptance of their illness, substance use or mental health problems and develop interventions to promote mastery of the skills and knowledge reflective of each unique patient experience to prepare and promote healthy responses to the transition (Meleis et al., 2000).

Objectives: The objectives of this project are to review pre-existing data over a 12 month period of HIV infected patients, ages 22-24, preparing for healthcare transition to HIV providers who completed TRAQ, describe provider interventions for transition prior to use of TRAQ, analyze TRAQ scores, characterize knowledge or skill deficits elicited from TRAQ, and describe > 1 provider intervention related to transition delivered and subsequent follow up after use of TRAQ. The objectives are to assess if using the TRAQ tool further enhances the quality of care regarding transition measured by documentation of each patient’s individual transition needs and documentation of provider intervention targeted to address those specific needs on a consistent basis.

Evaluation:  Analysis of data will include use of descriptive statistics to show the range, mean and median score of initial TRAQ scores as well as types of knowledge or skill deficits identified by patients. Further analysis will include descriptive statistics to display patient demographics such as gender and years aware of diagnosis, types of education provided (medication, HIV), types of skill training provided (calling for refills, scheduling appointments) and anticipatory guidance provided (fundamentals of health insurance and access to community resources). Run or control charts will be used to determine if improvement in our transition process has been enhanced by describing patterns of use of TRAQ and if interventions are increased after use of the TRAQ tool. In addition, through the use of correlation analysis, relationships will be described among selected indicators included but not limited to relationships between TRAQ scores, specific knowledge or skill deficits and years in care, years aware of HIV diagnosis, adherence to HAART and medical appointments and social support.

Summary/Implications for Practice: Tertiary prevention is unmistakably the solution to reducing the prevalence of new HIV cases. After many years of research, preparation for transition of HIV positive adolescents and young adults from pediatric/adolescent health care to adult health care has become one of the top priorities in HIV /AIDS care. Therefore, it is the responsibility of advanced practice nurses to embrace the challenge and explore any feasible and research based methods to assist the transitioning phase for this vulnerable population. This study will present the impact of implementing use of Transition Readiness Assessment Questionnaire (TRAQ) among young adults with HIV who transition their healthcare from a HIV clinic.