• Adolescents and Young Adults with Sickle Cell Disease Transition Readiness to Adult Care

      Speller-Brown, Barbara (2013)
      Purpose: This project applied existing knowledge of the need for transition programs and perceived readiness for transition of healthcare responsibility and transfer among adolescents and young adults (AYAs) with sickle cell disease (SCD) and their parents. The data from this project will be used to guide the development of an intervention program that prepares AYAs and their families for transition from pediatric to adult care. Significance: An increasing number of adolescents and young adults are surviving into adulthood and the need to transition from pediatric to adult care increases. In the United States, it is estimated that greater than 90% of individuals with SCD now reach 21 years of age, and the majority live into their forties. Thus transition has become a major focus. Poor transition services in patients with chronic illnesses have been associated with unnecessary dependency of the patient on their parents or guardians, developmental difficulties, psychosocial delay, lack of continuity of care, disengagement from services and increased morbidity and mortality with subsequent additional health care costs. Self-care management has been identified as essential to transition readiness among adolescents with chronic illnesses. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations was found to be most strongly associated with being ready to transfer. Methods: This study was conducted at a large urban children’s hospital in the Mid-Atlantic region. A convenience sample of 60 AYAs between 14 - 21 years of age and their parents or legal guardians were surveyed. Parallel versions of the Readiness to Transition Questionnaire were administered to AYAs and their parents that assessed health care responsibility behaviors of AYAs and parental involvement and overall readiness to assume complete responsibility for health care and overall readiness to transfer from pediatric to adult care. Results: AYAs perception of overall readiness to assume compete responsibility for their health care had a statistically significant association with the adolescent’s readiness to transfer (beta= .43, p = .000). AYAs did not perceive parental involvement as indicative of transition readiness; however, they did view assuming certain health care responsibilities, such as explaining their medical condition to others and knowing details about insurance as indicative of transition readiness. Parents perceived AYA’s responsibility for health care behaviors and less parental involvement as indicative of transition readiness. Older age was associated with greater perception of overall transition readiness for both parent and AYA (r = .479, p = .000). Disease severity was not significantly associated with overall transition readiness. Conclusion: This project reports a quantitative assessment of AYAs and parents’ perceived readiness to transition from pediatric to adult care as they prepare for the process of transition. So as to shift control of self-care management behaviors from parent to adolescent, both patients and parents identified the need for less parental involvement. These provide information to tailor a transition program that is unique for each individual AYA and their parent.
    • 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.
    • Advance Care Planning Communication for Young Adults with High-Risk Cancer

      Smith, Sharon L. (2016)
      Cancer is the leading disease related cause of death in young adults in the United States, with approximately 10,000 cancer-related deaths each year (Eheman et al., 2012). A young adult with high- risk cancer is faced with contradictory issues, being forced to look at the end of life in the midst of their own developmental challenges (Wiener et al., 2008; Wiener et al., 2012, Zebrack, 2011). The tasks for young adults age 14-21 include moving toward autonomous decision making and establishing one’s identity (Erikson, 1950; Arnett, 2004). For this reason, respecting the opportunity for young adults to make their own decisions is critical to effective communication. In young adults with cancer, social support from family, friends, health care providers, and other cancer patients is identified as a primary coping strategy and is associated with positive outcomes in this population (Kyngas et al., 2001; Trevino, Fasciano, Block, & Prigerson, 2013). Communication about future health care, including the end of life, is the essence of advance care planning (ACP). A diagnosis of high- risk cancer is a threat to one’s autonomy and self- control. ACP preserves patient autonomy and enables a sense of self- determination and self- control even at the end of life (Hebert, Moore & Rooney, 2011). The process of advance care planning is shown to improve quality of life (QOL) at the end of life by increasing communication, social support, autonomy and emotional well- being and decreasing stress, anxiety and depression (Waldrop & Meeker, 2012). However, approaching the topic of ACP is challenging and there is often discomfort on the part of the clinician as well as the patient and family. Issues such as fear of removing hope, lack of training and timing are described as barriers to discussions about end of life (Davies et al., 2008; Durall, Zurakowski & Wolfe, 2012). Conversations about future health are not easy and are often avoided by both healthcare providers and families. They are even less likely to occur if the patient is not an adult. The literature on ACP in young adults has increased in recent years and shows that this communication does not result in distress or negative effects on psychological well-being and is helpful for patients and care-givers (Lotz et al, 2013; Lyon et al., 2009; Lyon, et al., 2013; Lyon et al., 2014). The Institute of Medicine (IOM) recommends that ACP communication occur throughout the lifespan for all individuals; including young adults capable of participating and that it is the clinician’s responsibility to initiative these conversations (IOM, 2014). Similarly, the American Academy of Pediatrics recommends that advance care planning for young adults begins early in the disease process (American Academy of Pediatrics, 2000; Field & Behrman, 2002). The IOM endorses the establishment of evidence based quality standards for communication about ACP. There is emerging evidence describing the benefits of using structured ACP programs for young adults and for the completion of advance directive documents (Lyon et al., 2009, Hammes & Briggs, 2008; Towey, 1997). The development of a consistently applied approach that can be implemented at a time of stability has been recognized as ideal. However, the strategies available to guide communication with young adults about their needs and wishes for their health care, including at the end of life, remain limited (Pritchard, Cuvelier, Harlos, & Barr, 2011). The purpose of this evidence-based project was to use an advance directive document as a guide to initiate communication about ACP for young adults, with high- risk cancer in a simulated clinical setting. It was anticipated that this would facilitate nurse provider communication about end of life issues among the patient, family and the health care team.
    • Advance Care Planning With Adolescent and Young Adult Stem Cell Transplant Patients

      Ott, Lindsey V.; Hoffman, Ann G. (2019-05)
      Background: Advance care planning is not routinely performed with adolescent and young adult hematopoietic stem cell transplant patients, despite their critically ill status and the possibility that immediate medical decisions will need to be made on their behalf. The lack of advance care planning discussions or documentation can lead to incongruence between adolescent and young adult patients and caregivers about end-of-life preferences, poor communication between patients and providers, and unwanted medical interventions. Early initiation of advance care planning has been shown to be safe and feasible for adolescent and young adult patients facing life-threatening illnesses. Local Problem: In the Blood and Marrow Transplant Division at a large, urban freestanding pediatric hospital in the mid-Atlantic, it was determined that advance care planning was not routinely introduced to adolescent and young adult hematopoietic stem cell transplant patients during the transplant process. The purpose of this quality improvement project was to implement a standardized procedure for the initiation of advance care planning discussions and completion of advance care planning documentation for adolescent and young adult patients ages 15 years and older undergoing allogeneic hematopoietic stem cell transplant. Interventions: A standardized process for advance care planning meetings with adolescent and young adult patients was created, detailing procedures for identifying eligible patients, scheduling meetings for advance care planning during the pre-transplant process, and standardizing the documentation of advance care planning discussions. Five blood and marrow transplant team members participated in a one-hour training session conducted by a palliative care physician to increase knowledge and comfort level with advance care planning and the selected advance care planning document, Voicing My CHOiCESTM. Results: Four eligible adolescent and young adult patients were admitted for transplant between October and December 2018. All four patients completed Voicing My CHOiCESTM prior to hospital admission, and their completed documents were all easily located in the medical charts throughout their admissions. Documentation of the advance care planning discussion by the facilitating provider was present in the electronic health record for 100% of the patients. One hundred percent of the blood and marrow transplant team members rated the training session as “very helpful,” and rated Voicing My CHOiCESTM as helpful, easy to use, and appropriate for adolescent and young adult stem cell transplant patients. Conclusions: Early introduction of advance care planning is feasible for adolescent and young adult hematopoietic stem cell transplant patients. A standardized process for advance care planning helped to increase the number of adolescent and young adult hematopoietic stem cell transplant patients who participated in advance care planning discussions and completed Voicing My CHOiCESTM. This approach has the potential to improve communication and increase congruence between patients, caregivers, and providers.
    • Development and Evaluation of an Adolescent/Young Adult Healthcare Transition Program

      Phillips-Williams, Leslie A. (2016)
      Problem: The 2009-2010 National Survey of Children with Special Health Care Needs revealed that almost twenty percent of adolescents in the United States have a physical, mental, emotional, or learning disability. With continued advances in treatment modalities, technologies and scientific breakthroughs, 90% (750,000) adolescents with special healthcare needs are living well into adulthood. Most adolescents/young adults (AYA) lack needed preparation for transitioning from pediatric to adult providers. A barrier for providers to transitioning AYA is lack of knowledge, confidence and experience to provide transition assessment, planning and transfer in a standardized manner. Purpose: The purpose of this practice project was to develop the interprofessional structure, components, processes and education to support an adolescent, young adult healthcare transition (AYAHT) program, and to evaluate the initial interprofessional education on the AYAHT program. Methods: AYAHT program development and evaluation took place in an outpatient Pediatric Physical Medicine and Rehabilitation (PMR) department in a major metropolitan hospital. Program development and implementation consisted of meetings with Information Technology department specialists and adolescent department transition experts to plan logistics of incorporating the AYAHT program into both the electronic health record and for improving current transition procedures. Using Institute of Medicine (IOM) six aim of quality healthcare (2001) and Issel’s Program Theory (2014) AYAHT was developed into four phases over eight weeks. Phase I: Advance practice nurses (APN’s) (3), engaged in the development of first, second and third drafts of the AYAHT program. Phase II: Pediatric Physiatrists (2) and parent volunteers (2) reviewed the AYAHT program and produced a fourth draft. Phase III: PMR director approved the final version of the AYAHT program, featuring age specific healthcare transition interventions based on the Transition Readiness Assessment Questionnaire (2011) and the Consensus Statement on Healthcare Transitions for Young Adults with Special Healthcare Needs ( American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians, 2002). Phase IV: PMR APN’s developed education modules from the approved AYAHT version and PMR interprofessional staff (10) were distributed AYAHT Knowledge, Confidence, and Experience (AKCE) 25 item pretest questionnaire and educated. Results: Post AYAHT program education the AKCE 25 item posttest was distributed among the (10) interprofessional members. Using paired T-test, the AKCE demonstrated a significant increase between pre/ post-survey scores for all areas except knowledge of community physiatrist. Rating overall knowledge of AYA transition before education and after educational session revealed a significant difference in pre/post-test means (M=-2.6, SD=.51) and post-test (M=3.9, SD=.73); t(9)=-4.33, p = .002. Conclusion: AYAHT program development, interprofessional engagement and education promotes safe, patient centered, timely, effective, efficient, and equitable outcomes with AYA transition. Fourteen years post publication of the AAP’s Consensus Statement on Healthcare Transitions for Young Adults with Special Healthcare Needs (2002), there remains a gap in consistent, flexible, attentive, responsive, comprehensive coordinated care transition in pediatric institutions. Program replication for implementation promotes future translational research to improve practice outcomes and promote guideline development. DNP as the clinical leader has a role in practice problem evidence translation, dissemination and implementation.