Disease and medication burden of medically complex adolescents seen in an interdisciplinary transitional care clinic

PURPOSE: Transitional care for adolescents with complex diseases, who are entering adulthood, is challenging. The purpose of this study is to quantify the disease and medication burden of this population, who are transitioning though an interdisciplinary specialty clinic. METHODS: This study is a retrospective observational study of all patients seen in a transitional care clinic between July 2012 and March 2015. The main outcomes assessed included disease state and medication burden. Descriptive statistics, along with the paired t-test and McNemar’s test, were used. RESULTS: The study cohort included 216 patients. The average patient age was 20.7 years, and the median number of clinic encounters was 6. Patients had at least 1 of 8 primary diagnoses. On average, patients took medications from 5 classes and used 3 dose forms. Among 163 patients who had medication reconciliation performed, the average number of medication classes increased by 0.44±1.51 (p = 0.003). There was an average increase of 3.70%(SD±36.31%; p = 0.27) in the number of required medication lab assessments ordered for patients who had medication reconciliation performed. CONCLUSION: There is a high disease and medication burden among adolescent patients with complex disease states who are to transition to adult care.

Health Concerns of Adolescents and Adults With Spina Bifida

Due to advancements in medical care, people with spina bifida (SB) are surviving well into adulthood, resulting in a growing number of patients transitioning to an adult sector unequipped to care for people with chronic rehabilitative and medical needs. The Transitional and Lifelong Care (TLC) program is a multidisciplinary clinical service that compensates for this gap, providing comprehensive, coordinated care to adolescents, and adults with SB. As a relatively new clinical service, objective data about the patients using the service and their needs is scant. This study sought to identify the most common health concerns among TLC patients with SB at initial clinical consultation. A retrospective chart review of 94 patient charts was performed. Following data extraction, descriptive analyses were completed. The mean age of the sample was 29.04 ± 13.8 years. One hundred individual concerns and 18 concern categories were identified. On average, patients or care providers identified nine health concerns across various spheres of care, with care coordination being the most prevalent concern identified (86%). Patients also commonly had concerns regarding neurogenic bladder (70%), medications (66%), assistive devices (48%), and neurogenic bowel (42%). The numerous and wide-ranging health concerns identified support the need for individualised, coordinated care and a “medical home” for all adolescents and adults with SB during and following the transition to adult care. Health care providers caring for this population should continue to address well-documented health concerns and also consider raising discussion around topics such as sexual health, mental health, and bone health. Further research is required to understand how best to address the complex medical issues faced by adults with SB to maximise health and quality of life and improve access to healthcare.

A Patient-Centered Approach to Gathering Information on Social Determinants of Health from Patients with Sickle Cell Disease in Preparation for Their Transition to Adult Care

Background: Transition from pediatric to adult care has been a recent focus of sickle cell programs across the country due to patients with sickle cell disease (SCD) to living longer. 1 Transition programs for other chronic conditions focus largely on patient knowledge of the disease, treatments, and appointment compliance but for patients with SCD, social determinants of health (SDOH) must also be considered when guiding patients toward adult care. 2 Historically, lack of acknowledgement of the importance of relationships and trust building when addressing SDOH has led to barriers in patient responsiveness. 3 To facilitate this aspect of transition, our recently hired Community Health Worker (CHW) developed a Community Health Transitional Questionnaire (CHTQ) and conducted a Quality Improvement (QI) project to address SDOH in a patient-centered manner during transition to adult care visits at the clinic. Aims: Refine the CHTQ by gathering the "voice of the customer" to provide a more patient-centered approach to transition to adult care for patients with SCD. Complete the CHTQ with 70% of transition-aged (12-25 years) patients by 7/1/21. Methods: The CHTQ consists of 32 questions about SDOH in 8 categories (Food, Housing, Money/Finances, Transportation, Education/Work, Family and Other Support, Stress Prior to/After COVID, and Sleep). Thirty pediatric sickle cell patients were identified as being within the established transitional age group. A series of Plan-Do-Study-Act (PDSA) cycles were used to refine the CHTQ. Through patient/caregiver feedback, small increments of change were used to establish a CHTQ that would improve patient care and be accepted by the patients/caregivers. PDSA #1: During regularly scheduled appointments, two patients and their caregivers met with the CHW who described the purpose of the CHTQ and then asked the patient to privately complete the CHTQ. PDSA #2: Because of feedback received from PDSA #1, the CHW allowed the next two patients to have caregivers present while answering the CHTQ, but explained that ideally the patient should be able to answer the CHTQ without input from their caregiver before transition to an adult environment. PDSA #3: Because of the feedback received from PDSA #2, the CHW accompanied the clinic RN to the exam room and worked the CHTQ into the nursing check-in questions in an informal manner making the questions seem more routine. Results: After 3 PDSA cycles, 17 additional patients/caregivers completed the CHTQ without issues or concerns. A total of 22/30 (73%) CHTQs met the goal of completion by 7/1/21. One additional CHTQ has been completed since. Using the information from the CHTQ, the team has been able to better address individualized SDOH for each patient. For example, one area of concern identified was transportation with 9/23 (39%) patients expressing concerns getting to & from appointments and/or school/work. Transportation needs were then discussed with the clinic social worker who is now working with those patients, giving them tools to arrange transportation. Conclusion For SCD patients, it appears imperative that a relationship be established prior to inquires about SDOH. Using an informal patient-centered approach with the CHTQ was more likely to gain patient trust and allowed the CHW to obtain information needed to assist the patient with SDOH issues. Once SDOH issues were identified through the CHTQ, the CHW was able to find patient-driven, individualized resources addressing those concerns. References DeBaun, M.R. & Telfair, J. (2012). Transition and Sickle Cell Disease. PEDIATRICS, 130(5), 926-935 https://doi.org/10.1542/peds.2011-3049 Andermann, A. (2016). Taking action on the social determinants of health in clinical practice: a framework for health professionals. Canadian Medical Association Journal, 188(17-18), E474-E483. https://doi.org/10.1503/cmaj.160177 Cheney, C., Pecci, A., & Porter, S (2020, May). Social Determinants of Health: Lead or Partner. HealthLeaders. https://www.healthleadersmedia.com/clinical-care/social-determinants-health-lead-or-partner-0 Disclosures No relevant conflicts of interest to declare.

Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review

IntroductionTransition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and psychosocial outcomes. Quality indicators to evaluate transition to adult care are needed to benchmark and compare performance across conditions and health systems. This systematic review aims to identify quality indicators for successful transition to adult care which can be applied across chronic physical and/or mental illnesses.MethodsPublished literature will be searched using MEDLINE, Embase and CINHAL from earliest available date to July 2021. Grey literature will be searched using the Grey Matters tool. Using a set of inclusion/exclusion criteria, two independent reviewers will screen titles and abstracts, followed by full-text review. Disagreements will be resolved by a third reviewer. Study selection and data extraction will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols. Study appraisal will be completed using the Appraisal of Guidelines for Research and Evaluation for Quality Indicators instrument. Extracted quality indicators will be categorised into a conceptual framework.Ethics and disseminationResults from this review will offer novel insights into quality indicators that may be used to measure and evaluate transition success across conditions, which will be disseminated via a Canadian transition collaborative, workshops and peer-reviewed publication. Extracted quality indicators will be further prioritised in a Delphi study with patients, caregivers and providers. This is a critical step in developing a core set of metrics to evaluate transitions to adult care. Ethics approval is not required as this review will identify and synthesise findings from published literature.PROSPERO registration numberCRD42020198030.

Transitioning Adolescents with Perinatally Acquired HIV from Paediatric to Adult Centered Care: Caregivers’ Perspective

Aim: To investigate caregivers’ attitude towards transitioning HIV-positive adolescents from paediatric to adult centered care as well as understanding their perspective of transition inhibitors and facilitators. Study Design: We used a descriptive qualitative design and purposively selected principal caregivers of adolescents aged 15 to 19 years with perinatally acquired HIV who had been attending the paediatric infectious diseases clinic for at least 12 months before the study. Place and Duration of Study: Rivers State University Teaching Hospital, Port Harcourt, Nigeria. The study was conducted from August 2020 to November 2020. Methodology: We included principal caregivers whose wards were not cognitively impaired, whose HIV serostatus had been disclosed to them and who had been attending the Rivers State University Teaching Hospital paediatric infectious diseases clinic for at least 12 months before the onset of the study. Fifteen In-depth interviews were conducted and data was analyzed using the thematic analysis method with Atlas ti data qualitative software version 7.5.21. The sample size was determined when data saturation was reached. Results: Most principal caregivers did not understand their role and were not involved in preparing their wards for the transition to adult care. Perceived inhibitors to transition were anxiety on severing the long-term relationship with the paediatric health care team and concern that adult physicians may not be as caring as those in the paediatric clinic. Seropositive caregivers suggested that taking their wards along with them to their appointment at the adult clinic would facilitate transition. Conclusion: Principal caregivers were unaware of their roles in the transition process, healthcare providers should actively involve and educate them to ensure a smooth transitioning to the adult centered care.