• 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 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.
    • Improving Provider Compliance with Glycemic Guidelines in Children with Type 1 Diabetes

      Burr, Mary S. (2016)
      The serum glycated hemoglobin or hemoglobin A1c (HbA1c) measurement is the most important long-term measurement of glycemic control and treatment effect when caring for the child with Type 1 diabetes mellitus (T1DM). The goal of treatment in diabetes is to maintain the patient’s blood glucose within a specific therapeutic range. A team of specialized providers is typically responsible for the care of these children, and continuity of the treatment among providers has been shown to improve glycemic control. Additionally, provision of guideline driven care has been shown to have positive outcomes in terms of therapeutic HbA1c measurement. In January 2015, The American Diabetes Association (ADA) released revised HbA1c guidelines for children with T1DM. Their recommendation was all children with T1DM should have an HbA1c level of < 7.5%. The goal of this quality improvement (QI) project was to promote and measure the level of provider compliance with current (2015) ADA glycemic guidelines using a standardized phrase for documentation in the electronic medical record (EMR). Methods: There were three phases to the implementation of the project. The initial phase was the completion of an EMR audit to assess the current HbA1c measurements of the pediatric patients in the clinic. The second phase was performance of a survey to assess provider knowledge of current ADA guidelines and the third phase was the creation and implementation of a “smart phrase” for EMR documentation, which confirmed that the HbA1c measurement and the recommendations of the ADA had been addressed with the patient and family. At the completion of the intervention phase, the project leader performed a manual retrospective chart review, which provided the nominal data needed to measure provider compliance in the use of the EMR smart phrase. Results: The project took place in a Diabetes and Endocrinology Center of a large urban academic medical center. The convenience sample of providers consisted of 9 pediatric diabetes care providers who currently practice at the center: three pediatric endocrinologists, three pediatric nurse practitioners and three certified diabetes educators. Data collection for the project was conducted over a six-week period, capturing 122 patient visits. Overall there was a 59% provider compliance rate with smart phrase usage; the group most compliant in smart phrase usage was the group of APRN providers, who used the phrase in 70% of patient visits. Conclusions: The standardized EMR phrase was helpful in identifying provider compliance with discussing current ADA guidelines when utilized. Consistent use of the smart phrase reflects guideline-driven care by diabetes providers and sends a clear message to families of patients with T1DM regarding the importance of glycemic control and improved patient outcomes.
    • Increasing Human Papillomavirus Vaccination Rates Among Adolescents in Primary Care

      Hodge, Rachel E.; Hoffman, Ann G. (2020-05)
      Problem and Purpose: Each year, 33,700 men and women in the United States are diagnosed with a cancer caused by infection from the human papillomavirus (HPV), 90% of which could have been prevented through vaccination. Despite the proven safety and effectiveness of this vaccine, rates of uptake are low nationwide, a mere 53.7% for females and 48.7% for males. The purpose of this quality improvement (QI) project was to implement and evaluate interventions guided by the 4 Pillars™ for Practice Transformation Program, an evidence-based tool-kit shown to increase HPV vaccination rates across settings, including in primary care. Methods: A bundle of interventions was implemented using the 4 Pillars Program. Pillar 1 Convenience and Easy Access: all patient encounters of those aged 11-18 were used as an opportunity to vaccinate (not just well visits). Pillar 2 Patient Communication: providers issued a “strong recommendation” for the HPV vaccine using the Same-Way Same-Day strategy from the Centers for Disease Control and Prevention (CDC). Pillar 3 Enhanced Vaccination Systems: Immunization status was assessed as part of vital signs and Vaccine Information Statements (VIS) were given to all eligible patients’ parents. Pillar 4 Motivation: progress toward improving HPV vaccination rates was tracked and posted in staff break room. Results: Implementation of this tool-kit resulted in an increase in the HPV vaccination rate from 68% to 76.6%, an 8.6% increase (p<0.01). 100% of patients presenting for 11-year-old well child checks were vaccinated (n=32). 100% of eligible patients were given VIS and immunization status was assessed as part of vital signs for 100% of patient encounters. There was no real gender difference discovered in the final HPV vaccination rate. Among males (n=521), there was a 78% final rate and 76% for females (n=574), echoing the closing of the gender gap nationwide. 15 patients who previously refused, consented and were vaccinated. Conclusion: This QI project demonstrated this vaccination tool-kit is an effective way to increase HPV vaccination among adolescents in primary care.
    • Palliative Care Consultation in Pediatric Stem Cell Transplant

      Lafond, Deborah A. (2012)
      Purpose: The purpose of this project was to investigate the feasibility of a proposed practice change to integrate early palliative care consultation that would promote transcendent comfort in children and adolescents with advanced or high-risk cancers or other non-malignant diseases undergoing hematopoietic stem cell transplantation (HSCT). Background and Significance: Hematopoietic stem cell transplantation (HSCT), a modality used to treat a variety of advanced cancers and other serious non-malignant diseases in children and adolescents, may have significant symptom distress. The goal of enhanced comfort is the utmost concern of children and adolescents undergoing HSCT and their families (Mayer, Tighouart, Terrin, Stewart, Peterson, Jeruss, & Parsons, 2009). Multiple pediatric professional organizations have set a standard to promote relief of symptom distress and promote quality of life and enhanced comfort (AAP, 2000; Freibert & Huff, 2009). Clinical research on the effectiveness and benefits of interventions to relieve symptom distress is paramount to expanding the evidence base of pediatric palliative care and the science of HSCT in prioritizing comfort. Methods: A single-site, feasibility study was used to examine the primary aims of (1) willingness of patients and families of a vulnerable population to receive the palliative care intervention, (2) willingness of the health care team to refer families, (3) resource allocation, and (4) family and provider satisfaction. Secondary aims included evaluation and concordance of comfort from parent and child perspectives. A convenience sample of 12 families (child undergoing HSCT and their parent) were enrolled on the study. Data collection included referral and enrollment patterns, and time and resources required for palliative care interventions. Additional data included child self-report and parental reports of their child's comfort at baseline, T1 (~14 days following HSCT), and T2 (~ 30 days following HSCT). Family and provider satisfaction were measured at the end of enrollment. Findings: 100% of eligible families were referred and consented to participate (N = 12). Each family received a minimum of one visit per week, however, an average of 3 visits per week were made. Visits ranged from 15 minutes to 2 hours, depending upon individual circumstances. The top interventions requested or required, in addition to standard HSCT care interventions, included supportive care counseling, massage therapy, aromatherapy, play therapy, acupuncture, acupressure, and other integrative medicine techniques. Children and adolescents consistently rated comfort as "very good", however, parents tended to rate their child's level of comfort lower. There were 3 deaths of participants during the study. Families and providers expressed high satisfaction with this approach to care. Conclusion: This intervention is a novel approach to providing early palliative care services with curative intent therapy. Early palliative care intervention was well received by providers and families of children undergoing HSCT. Parents rate their child's level of comfort somewhat lower than child self-report, however, distress of parents impacts the entire family system thus interventions aimed at improving the child's comfort may improve parental distress and support better family functioning. Early palliative care services helped palliative care practitioners better meet the needs of the families who experienced the death of their child. Because of this additional support, end of life was peaceful and coordinated. This approach to care will be integrated as a standard of care for HSCT at the study site.