Health Care Transition Research Articles

Improving the Quality and Completeness of Discharge Summaries at a Tertiary Care Hospital in Pakistan: A Quality Improvement Project.

Introduction Discharge summaries (DS) allow continued patient care after being discharged from the hospital. Only a few quality improvement projects (QIPs) focused on assessing and improving the quality and completeness of DS at tertiary care hospitals have been undertaken in Pakistan. This QIPaimed to evaluate and enhance the quality and completeness of DS at a tertiary care hospital in Pakistan to facilitate seamless healthcare transitions. Methods A QIP was conducted in the medical unit of a tertiary care hospital in Rawalpindi, Pakistan. The DS were assessed using the e-discharge summary self-assessment checklist devised by the Royal College of Physicians (RCP). This QIP was done by the plan, do, study, act (PDSA) cycle. The PDSA cycle comprised two audit cycles and an intervention in between them. The first audit cycle (AC) was conducted on 150 DS. Its duration was from March 2023 to June 2023. An educational workshop was conducted before the re-audit cycle (RAC) to address deficiencies and reinforce the implementation of the guidelines provided by the RCP. The RAC was conductedfrom June 2023 to August 2023. 100 DS were studied and analyzed to assess for improvement in the completeness of DS. Frequencies and percentages were calculated in each audit cycle. The Chi-squared test was applied to compare the statistical difference between the results of both audit cycles. Results A total of 150 DS were analyzed in the first AC and 100 DS in the RAC. The results of the first AC show that the details of any allergies were recorded only in 3% of the DS; this percentage significantly improved to 51% after the RAC (p-value <0.05). Relevant past medical history was included in 52% and 88% of the DS during the first AC and RAC, respectively (p-value <0.05). Secondary diagnoses were written in 54% and 71% of the DS during the firstAC and RAC, respectively (p-value <0.05). Details of relevant investigations were included in 60% and 88% of the DS during the first AC and RAC, respectively (p-value <0.05). The post-discharge management plan was written in 90% and 98% of the DS during the first AC and RAC, respectively (p-value <0.05).The follow-up plan was written clearly in 65% and 93% of the DS during the first AC and RAC, respectively (p-value <0.05). Conclusion The DS was found to be incomplete after analyzing the results of the first AC. The details related to allergies, medications, operations, and procedures were found to be missing in the majority of the cases. No mention of the patient's concerns or expectations was made in the DS. The results of the RAC showed improvement in the level of completeness of DS. The majority of the weak points observed after the first AC seemed to haveimproved after the RAC, which shows that intervention proved to be quite effective in improving the completeness and quality of DS. The RAC showed significant improvement in the completeness of the details relating toinvestigations, allergies, past medical history, secondary diagnoses, and the post-discharge follow-up plan. QIP must be routinely carried out to assess and improve the completeness and quality of DS at hospitals.

A Quality Improvement Initiative to Improve Health Care Transition Planning at Adolescent Well Visits

ObjectiveHealth care transition (HCT) planning supports adolescents as they move from pediatric to adult health care and is recommended for all youth. HCT planning uptake remains low, with little known about HCT in the adolescent well child check (WCC) setting. We sought to increase rates of HCT planning at WCCs by adapting best practices for HCT from specialty and chronic care. MethodsThis quality improvement initiative at 12 to 17-year-old WCCs at four Internal Medicine-Pediatrics primary care clinics, was based on the first three of the “Six Core Elements” of HCT framework and integrated into the electronic health record. Two uptake measures were assessed via chart review after three plan-do-study-act (PDSA) cycles, with two provider surveys and an implementation science analysis further informing interpretation. ResultsBy the final PDSA cycle, the percentage of 14 to 17-year-old WCCs at which HCT planning was discussed and a screening tool completed increased from 5% to 31%, and the percentage of 12 to 13-year-old WCCs at which the HCT policy was discussed increased from 6% to 47%. Provider survey results revealed endorsement of HCT goals, but time and technological barriers, which were further elucidated in the implementation science analysis. ConclusionsThis quality improvement initiative increased rates of HCT planning during adolescent WCCs. While limited to three Core Elements and Internal Medicine-Pediatrics clinics, strengths include measures capturing all WCCs, contextualized by provider surveys and an implementation science framework. Lessons from this effort can inform future tailored HCT initiatives at adolescent WCCs.

Sex-based trajectories of health system use in lonely and not lonely older people: A population-based cohort study.

There is growing interest in understanding the care needs of lonely people but studies are limited and examine healthcare settings separately. We estimated and compared healthcare trajectories in lonely and not lonely older female and male respondents to a national health survey. We conducted a retrospective cohort study of community-dwelling, Ontario respondents (65+ years) to the 2008/2009 Canadian Community Health Survey-Healthy Aging. Respondents were classified at baseline as not lonely, moderately lonely, or severely lonely using the Three-Item Loneliness Scale and then linked with health administrative data to assess healthcare transitions over a 12 -year observation period. Annual risks of moving from the community to inpatient, long-stay home care, long-term care settings-and death-were estimated across loneliness levels using sex-stratified multistate models. Of 2684 respondents (58.8% female sex; mean age 77 years [standard deviation: 8]), 635 (23.7%) experienced moderate loneliness and 420 (15.6%) severe loneliness. Fewer lonely respondents remained in the community with no transitions (not lonely, 20.3%; moderately lonely, 17.5%; and severely lonely, 12.6%). Annual transition risks from the community to home care and long-term care were higher in female respondents and increased with loneliness severity for both sexes (e.g., 2-year home care risk: 6.1% [95% CI 5.5-6.6], 8.4% [95% CI 7.4-9.5] and 9.4% [95% CI 8.2-10.9] in female respondents, and 3.5% [95% CI 3.1-3.9], 5.0% [95% CI 4.0-6.0], and 5.4% [95% CI 4.0-6.8] in male respondents; 5-year long-term care risk: 9.2% [95% CI 8.0-10.8], 11.1% [95% CI 9.3-13.6] and 12.2% [95% CI 9.9-15.3] [female], and 5.3% [95% CI 4.2-6.7], 9.1% [95% CI 6.8-12.5], and 10.9% [95% CI 7.9-16.3] [male]). Lonely older female and male respondents were more likely to need home care and long-term care, with severely lonely female respondents having the highest probability of moving to these settings.

A92 THE CURRENT STATE OF PEDIATRIC TO ADULT TRANSITION OF CARE: A ROUND TABLE DISCUSSION WITH KEY STAKEHOLDER GROUPS

Abstract Background There is a severe paucity in available resources to facilitate a safe and effective pediatric to adult health care transition for patients with chronic disease. Aims This study aims to better understand the experiences of key stakeholder groups involved in pediatric to adult transition of care across various chronic disease specialties within a tertiary care urban environment. Methods A focus group was conducted on July 12th, 2018 at Women’s College Hospital with key stakeholder groups. Questions focused on the top issues related to pediatric to adult transition of care and an ideal transition model for their respective patient populations. The second part of this study included individual interviews with patients and carepartners. Focus group meetings and individual interviews were both audio-recorded and transcribed for qualitative thematic analysis. Results Seventeen pediatric and adult care physicians representing ten chronic disease specialties were represented. Seven patients and care partners were interviewed. Major focus group themes included: disproportionate access to resources between and within specialties (n=10), lack of mental health support in the adult setting (n=8), fragmentation of care due to multiple providers as a result of patients leaving for employment or education (n=6), patients feeling alienated due to decrease in allied health support or due to shorter appointment times (n=8), and difficulty retaining consistent care due to missed appointments as a result of inconsistent communications or change in location for education or employment (n=7). Ideal care models were suggested to include: centralized intake procedure to identify patients who may require extra support (n=9), education for scheduling administrators about second chances after a no-show (n=5), implementation of joint clinics with pediatric and adult care teams or back-and-forth clinic sessions to ensure bidirectional provider comfort before discharge to adult care system (n=4), and implementation of a dedicated transitions navigator or point of contact for patients (n=10). The individual patient and carepartner interviews emphasized the need for: centralized and comprehensive online resource (n=7), simple and clear educational content introducing the adult healthcare system (n=7), opportunities to meet and share information with other individuals in a similar position (n=3), and availability of a transitions navigator (n=4). Conclusions Current pediatric to adult transition of care resources are fragmented, allocated inefficiently, difficult to ascertain and often constrained to a specific condition or location. Future efforts should focus on improving the care transition process for high-risk patient populations by taking a comprehensive approach utilizing innovative, and multidisciplinary solutions. Funding Agencies None

A68 PERCEPTIONS OF ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE REGARDING A BIOPSYCHOSOCIAL TRANSITION INTERVENTION: A QUALITATIVE STUDY

Abstract Background The transition from the pediatric to adult care healthcare system for adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) is complex. This group requires support to prepare for and adapt to adult care due to the manifestation of the disease, expectations for self-management, and simultaneous life transitions. To address this need, a multi-site randomized controlled trial (RCT) is being conducted to evaluate the impact of a multimodal transition intervention on functional, clinical, and psychosocial outcomes for AYAs with IBD. An embedded qualitative study explored participants’ perspectives of the intervention's acceptability and appropriateness to support the translation of findings into practice. Aims Using in-depth individual qualitative interviews with a purposive sample of AYAs in both the intervention and control arms of the RCT, this qualitative study aimed to understand AYAs’ experiences preparing for and undergoing service transitions, developing self-management skills, and engaging with the intervention. Methods Semi-structured interviews were held via videoconference with 21 AYAs aged 16-18 years participating in the RCT (intervention arm n=11; control arm n=10) in Toronto, Canada. Purposive sampling was used to recruit AYAs with diverse demographic and clinical characteristics at different stages of the healthcare transition. Interviews were audio-recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. Results The analysis yielded four overarching themes related to 1) individual, familial, and system-level factors promoting transition readiness, 2) areas of strength and areas for growth regarding self-management skill development, 3) perceptions of the multimodal transition intervention, including barriers and facilitators to engagement, and 4) recommendations for future transition care, including refinement of the intervention. Findings to date indicate the criticality of considering AYAs’ support systems, learning styles, and communication preferences when designing and implementing transition interventions. The qualitative data analysis is ongoing, and the full results will be presented. Conclusions The perspectives of AYAs with IBD can inform the development and refinement of clinical interventions, ensuring they are tailored to recipients’ unique needs and preferences and promote engagement and skill development during pediatric-adult transitions. Funding Agencies CCCThe Leona M. and Harry B. Helmsley Charitable Trust

39. Health Care Transition Knowledge, Attitudes and Baseline Readiness Scores of Adolescents With Chronic Health Conditions at the East Avenue Medical Center

39. Health Care Transition Knowledge, Attitudes and Baseline Readiness Scores of Adolescents With Chronic Health Conditions at the East Avenue Medical Center

Quality in care requires kindness and flexibility – a hermeneutic-phenomenological study of patients’ experiences from pathways including transitions across healthcare settings

Background The number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings.MethodsWithin a hermeneutic-phenomenological approach, interviews were conducted with three women and five men with various diagnoses and care paths between 30 and 75 years of age. Data underwent a three phased thematic analysis leading to three themes.ResultsPatients with various illnesses’ experiences of quality of care is described in the themes being powerless in the face of illness; burdensome access and navigation; and being in need of mercy and striving for kindness. This highlights that patients’ experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition.ConclusionsThis hermeneutical-phenomenological study sheds light on the lived experiences of people who are at various stages in their care paths with transitions across healthcare settings. Although our findings are based on the lived experiences of 8 people in a Danish context, in light of the discussion with nursing theory and other research, the results can be reflected in two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, were essential for their experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.

The usability and effectiveness of eHealth and mHealth interventions that support self-management and healthcare transition in adolescents and young adults with chronic disease: A systematic review (Preprint)

The usability and effectiveness of eHealth and mHealth interventions that support self-management and healthcare transition in adolescents and young adults with chronic disease: A systematic review (Preprint)

Health Care Transitions Among Adolescents and Young Adults With Cancer.

Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between age 15 and 39 years, are a growing population with unique developmental, psychosocial, and health-related needs. These individuals are at excess risk of developing a wide range of chronic comorbidities compared with the general population and, therefore, require lifelong, risk-based, survivorship care to optimize long-term health outcomes. The health care needs of survivors of AYA cancers are particularly complicated given the often heterogeneous and sometimes fragmented care they receive throughout the cancer care continuum. For example, AYA survivors are often treated in disparate settings (pediatric v adult) on dissimilar protocols that include different recommendations for longitudinal follow-up. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care and, in many cases, from pediatric to adult clinics while still remaining engaged in long-term follow-up. Systematic, age-appropriate transitional practices involving well-established clinical models of care, survivorship care plans, and survivorship guidelines are needed to facilitate effective transitions between providers. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes in AYA cancer survivors.

Healthcare transition practices of occupational therapists in South African public healthcare.

Healthcare transition (HCT), the process of transitioning an adolescent from paediatric- to adult-oriented care, is vital for improving the long-term health of adolescents with chronic conditions. The role of occupational therapy in HCT has not been well-researched. Effective HCT practices are necessary to ensure that adolescents have access to coordinated, optimal and uninterrupted occupational therapy services throughout this period of development. This study describes occupational therapists' self-perceived knowledge of HCT within the context of South African public health facilities, the HCT practices used, and the factors that promote or hinder the success of HCT within this context. The study utilised a quantitative, non-experimental and descriptive cross-sectional design. Simple convenience and snowball sampling were used to recruit participants via professional databases and social media forums. An online survey was used to collect data. Descriptive statistics and simple content analysis were used to analyse the information. This study identifies limitations in the knowledge and practical implementation of HCT within South African occupational therapy practice. Healthcare transition is characterised by inadequate use of policies, insufficient transition preparation and poor outcome measurements. There is a need for the development of training programmes and practice guidelines to optimise and support HCT implementation within South African occupational therapy practice. This study provides novel data on HCT practices utilised by occupational therapists in South African public health facilities. This study has potential use for the development of effective HCT programmes that can improve the functional outcomes of South African adolescents.

Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative

Background and significanceCongenital adrenal hyperplasia (CAH) is a genetic condition impairing adrenal steroid production, requiring lifelong steroid replacement, leading to decreased quality of life and a shortened lifespan. Preparing and supporting adolescents with CAH to develop health-related knowledge, skills, and decision-making during the pediatric-to-adult healthcare transition (HCT) is a priority. Many adolescents with CAH do not receive adequate HCT and do not attend follow-up care after transfer to an adult setting. The Comprehensive Adolescent Healthcare Transition (CAH-T) program was developed using CAH care guidelines and the Got Transition Six Core Elements of Healthcare Transition approach. PurposeThis quality improvement (QI) initiative aimed to evaluate clinicians’ utilization and acceptance of the CAH-T program for addressing the HCT needs of adolescents with CAH in a southeastern United States pediatric endocrine clinic. InterventionBaseline demographics, the Health Care Transition Feedback Survey for Clinicians, and the Current Assessment of Healthcare Transition Activities were measured using surveys adopted from Got Transition. Clinicians were educated on the CAH-T program and patient education materials. Following implementation, clinicians documented all CAH-T program-recommended interventions provided in the clinic. Surveys were reassessed using repeated measures. EvaluationTwenty-nine clinicians participated. Eight separate patients received 53 total CAH-T program-recommended interventions during the three-month observation period. Paired assessment of the Current Assessment of Healthcare Transition Activities scores increased from 15.29 ± 8.32 to 24.00 ± 6.11 (p = 0.018; r = 0.63). The Health Care Transition Feedback Survey for Clinicians mean scores increased from 2.75 ± 0.26 to 3.30 ± 0.43 (p = 0.018; r = 0.59). These measures indicate increased utilization of HCT services and acceptance of HCT value. Clinicians suggested that time limitations, English-only transition education materials, and lack of electronic medical record integration were significant barriers to HCT support. Implications for practiceA structured HCT program ensures clinicians provide adolescents with CAH support and guideline-based care. The CAH-T program offers an example of developing and implementing an HCT program for adolescents with CAH. Integration in the electronic medical record will ultimately increase program sustainability.

Health care transition experiences of young adults with medical complexity

BackgroundTransition from pediatric to adult healthcare and services is an important event in the life course of all youth, including youth living with medical complexity. Data from the National Survey of Children’s Health indicates less than 20 % of youth receive health care transition services. The goal of our study was understanding the support, tools and resources that facilitate successful health care transition of young adults living with medical complexity. MethodsYoung adults living with medical complexity and their parents shared their lived experience of ‘what worked’ and ‘what is needed’ for successful health care transition during focus group sessions. Content analysis of transcripts used an iterative and deductive approach guided by a priori themes. FindingsThe voices of ten young adults and fourteen parents were shared during three virtual focus group sessions. They described health care transition (HCT) as an individualized process with success relying on consistent, clearly-defined and systemwide guidelines and resources. Moving from pediatric/family-focused care to adult/patient-focused care requires increased self-management and young adults often felt under-prepared for this role. Support from formal transition coordinators would improve communication between the multiple health, county/state agency and education systems involved during the transition period. ConclusionsUnderstanding the support, tools, and resources specifically needed by young adults with medical complexity for successful pediatric to adult health care transition is a critical first step in addressing the documented lack of transition services for this vulnerable population. This includes formal peer support programs for young adults with medical complexity and their parents.

Healthcare transition readiness of families of youth with cystic fibrosis during COVID-19: A correlational multicenter analysis

BackgroundEnhancing family readiness for the healthcare transition (HCT) to adult-focused care can help adolescents and young adults (AYA) thrive in adulthood. We aimed to explore modifiable and non-modifiable individual, family, and healthcare factors associated with HCT readiness of AYA among families of AYA with cystic fibrosis (CF) during COVID-19. MethodsA multi-site, cross-sectional design was used and an online survey was deployed among families and their AYA from three US pediatric CF centers. The STARx Transition Readiness Questionnaire assessed caregiver- and AYA-perceived HCT readiness of AYA. ResultsCaregivers (N = 71) and their AYA with CF (N = 33, aged 12–21 years) perceived moderately high HCT readiness of AYA. Caregiver resilience was a significant (p = 0.006), family-level factor correlated with caregiver-perceived HCT readiness. ConclusionsFamilies perceived similar levels of AYA readiness for adult-focused care. Caregiver resilience is an important, modifiable family-level factor for targeted interdisciplinary interventions aimed at enhancing HCT processes during COVID-19.

Improving transition of care from pediatric to adult endocrinology for adolescents with diabetes

IntroductionAdolescence is a challenging time in a child’s life and can be even more stressful for those with a chronic medical condition such as diabetes mellitus. Adolescents and young adults with type 1 and type 2 diabetes experience worsening glycemic levels as they enter adulthood. Data suggest that a formalized health care transition process and beginning transition preparation in early adolescence leads to better transition outcomes. MethodsThe aim of this study was to create a transition of care program for youth with diabetes in a standalone children’s hospital by following the Got Transition Six Core Elements of Health Care Transition. First, we implemented a transition of care policy and formalized how we discussed transition of care with patients and families in early adolescence. Further improvements have included assessing readiness to transition, designing a curriculum centered around adolescent-specific issues and how they relate to diabetes management, and forming connections with adult endocrinologists in the area to establish a seamless transition process. ResultsAfter implementing our program, 90 % (28/31) of our patients indicated they were very or somewhat ready to transition to adult care. DiscussionWe outline our process for developing a transition of care program and provide a practical tool for other pediatric diabetes providers who are interested in implementing a similar program.

Issues of transition support to adulthood and the practices of pediatric-adult healthcare transition in neurological diseases

A workshop of the Special Committee on Measures for Transition from Pediatric to Adult Health Care, the Japanese Society of Neurology was held to discuss various issues and practices involved in healthcare transition. The following points were addressed: (1) the history of, and issues involved in, promoting support for patients requiring medical care, (2) cooperation between pediatric medical centers and university hospitals, (3) collaboration between pediatrics and neurology in medical and rehabilitation facilities, and (4) a questionnaire survey of members of the Japanese Society of Neurology. The reasons for extreme difficulties in pediatric-adult healthcare transition for patients with neurological diseases, especially those who require continuous intensive medical care over a long period of time, include the difference in the operating systems of pediatric and adult departments, in addition to the difference in the diseases treated during childhood and adulthood. For holistic transition support, it is necessary to strengthen cooperation not only among medical professionals, but also among multiple professions, as well as between local communities and government.

Exploring six successful nurse-led transition clinics: Experiences and outcomes

Background and purposeIn the Netherlands, the 2022 Quality Standard 'Youth in transition from paediatric to adult care' underscores the importance of structured transitional care for young adults with chronic health conditions. Despite this emphasis, detailed knowledge about transition programs and their successful elements remains sparse. This study aims to bridge this gap by exploring nurse-led transition clinics that had successfully implemented core interventions such as a transition coordinator, warm handover, and individual transition plans. MethodsEmploying a mixed-methods approach, this study integrated semi-structured interviews with 15 healthcare professionals from both paediatric and adult care across six transition clinics, and surveys from 54 young adults who had transitioned within the last three years. The ‘On Your Own Feet Framework’ guided the evaluation of transitional care practices. Thematic analysis was applied to qualitative data, while descriptive and inferential statistics were used to analyse quantitative data. ResultsThe study revealed a strong dedication among healthcare professionals to ensuring smooth transitions and effective collaboration between paediatric and adult care. The young adults reported high satisfaction with their transitions, particularly appreciating the continuity of care and the pivotal role of nurses and nurse practitioners as transition coordinators. However, challenges such as engaging young adults, resource allocation, and financial complexities were noted, alongside areas for improvement including shared decision-making and managing parental involvement. Motivation and collaboration among staff were identified as facilitating factors. Discussion and conclusionOur findings emphasize the vital role of nurse-led transition clinics in enhancing healthcare transitions for young adults in the Netherlands, aligning with the principles outlined in the Quality Standard and the On Your Own Feet Framework. While high satisfaction levels with current practices suggest a positive impact, they also highlight that ongoing improvement and adaptation are needed to overcome identified challenges. Successful healthcare transition requires a comprehensive, collaborative approach involving patients, families, and healthcare professionals, supported by organizational and systemic frameworks. This study contributes to a nuanced understanding of transitional care, suggesting a path forward for integrating these practices into standard care models.

Pediatric Care Volunteerism: Lessons from the COVID-19 Pandemic.

This article explores the deep impact of the COVID-19 pandemic on pediatric care volunteerism and specifically highlights the innovative responses and adaptations made by Project Sunshine, an international nonprofit organization headquartered in New York, NY. Prior to the pandemic, Project Sunshine's in-person volunteers played a critical role in providing comfort and support to hospitalized children and their families, bridging the gap between clinical treatment and patient satisfaction. However, COVID-19 brought unprecedented challenges to hospitals around the world, including widespread interruption of volunteer activities due to safety concerns and visitation restrictions. In response, Project Sunshine swiftly pivoted to virtual volunteering by launching TelePlay, an online playroom offering live interactive sessions between trained volunteers and pediatric patients. This approach addressed the immediate volunteering needs of patients during the pandemic and also extended support beyond traditional hospital settings, allowing Project Sunshine to reach children at home facing isolation and socialization challenges. Early pilot data is very encouraging: TelePlay participants were noted by their caregivers to be less anxious after a TelePlay session compared to before (p < 0.001). Additionally, the flexibility and accessibility of TelePlay have opened new avenues for volunteers to engage with their communities, transcending geographical barriers and accommodating varied schedules. As the healthcare landscape transitions back to in-person volunteerism, Project Sunshine embraces a hybrid model, offering both in-person and virtual volunteering opportunities. This flexible approach reflects the organization's commitment to helping shape the future of volunteerism to meet the evolving needs of pediatric patients and volunteers alike.

Health care transition recommendations for young people with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholder survey findings

Health care transition recommendations for young people with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholder survey findings

Training young adults as community health workers specializing in pediatric to adult health care transition to support emerging adults with sickle cell disease

BackgroundTransition to adulthood is a vulnerable time for emerging adults (16–25 years of age) with sickle cell disease (SCD), as there is a seven-fold increase in mortality rates during the transition period. Emerging adults with SCD also have the highest rates of hospitalizations, emergency room visits, and hospital readmissions compared to other age groups. Community health worker (CHW) programs have been developed to address outcomes such as patient activation which includes an individual’s knowledge, skill, and confidence for managing one’s health and healthcare, quality of life, and healthcare utilization for patients with chronic illnesses. However, few programs specifically target transition-age patients with SCD. MethodsThe aims of this study were to (1) create and adapt the existing Penn Center for Community Health Workers IMPaCT model trainings and materials to specifically support CHWs working with transition-age patients with SCD and (2) evaluate the feasibility of this adapted model to improve job readiness of the CHWs and perceived value of the CHWs by patients with SCD. A multidisciplinary workgroup defined specific goal-setting categories and developed a targeted CHW training curriculum. Additionally, the workgroup wrote a job manual including step-by-step guidelines with example talking points and defined an ongoing supervision of CHWs. Measures of implementation and impact on CHW job readiness included CHW training completion, job retention, knowledge evaluation, and patient reported CHW engagement. Results15 individuals completed CHW training with an average employment length of 1 year and 4 months. 7 (47%) CHWs had research experience, 8 (53%) had clinical experience, and 11 (73%) reported SCD experience. On post-training knowledge evaluations, CHWs successfully identified key aspects of SCD, role scope, and research ethics. Patients frequently reported that they reached their goals while working with trained CHWs. ConclusionThis CHW training program provides a novel adaptation to the evidence-based IMPaCT CHW model to support the needs of youth with SCD during the vulnerable time of transition from pediatric-focused to adulthood-focused healthcare.

Initiatives for supporting the health care transition in various regions: activities of transitional care support centers

Initiatives for supporting the health care transition in various regions: activities of transitional care support centers