E-Poster

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  • Danielle Russell

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  • Sarah Munce, Sarah Munce, Alene Toulany, Kosta Pachneris, Mandy Archibald, Gina Dimitropoulos, Kristina Kokorelias, Dorothy Luong, Michelle Nelson, Melanie Penner, Emily Seto, Robert Simpson, Christopher Hoang, Gideon Yang, Mark Bayley

    Background: Transition from the child to adult health care system for youth with disabilities is a complex process that should include a variety of services. If the transition to the adult health care system is not successful, it can lead to poor health outcomes and less opportunities to participate in the community. Programs that help the transition from the child to adult health care systems are important and needed, but not much is known about what the best programs are.

    In a previous study completed by this team, an intervention involving peer navigation was identified as a potentially effective and important intervention to help with transition. Peer navigation is defined as a one-on-one interaction between a peer navigator and a patient. It involves a trained peer who provides help with education, advocacy, and system navigation.

    As a follow-up to this study, the team interviewed youth with cerebral palsy (CP) and childhood acquired brain injury (ABI) and family members to identify their needs and preferences for what would be involved in a peer navigation intervention. Some of the components that were identified included: a) a knowledge/resource library that can be kept up-to-date, b) emotional and social support between youth and navigators c) opportunities to encourage advocacy/opportunities for participants to discuss advocacy strategy and d) opportunities for parental involvement. These considerations are now being added to an existing virtual care platform to form a new peer navigation intervention for youth with childhood-onset disabilities called CONNECT: Compassionate Online NavigatioN to Enhance Care Transitions.

    Objective: The purpose of the current project is to test CONNECT with a small group of youth to look at how feasible the intervention is, what potential benefits it might have, and understand the experiences of youth and peer navigators who participate in the intervention.

    Description: An integrated knowledge translation (iKT) panel of youth with CP and childhood-onset ABI and caregivers will be established at the outset of the study to ensure the relevance, quality, and direction of the project. This mixed methods study will 1) test the feasibility, acceptability, useability, usage, and potential effectiveness of CONNECT among youth with CP and childhood-onset ABI over 6-months (pre-post study design), and 2) explore the experiences of participating in CONNECT and the study itself from the perspective of youth and peer navigators (qualitative descriptive design).

    Significance: CONNECT presents a fiscally sustainable approach to transition program delivery. The potential to implement CONNECT into existing transition programs and pathways may be a clinically and cost-effective solution that would have positive and far-reaching beneficial impacts on young people and the healthcare system.  

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  • Katherine Bailey, Julia Avolio, Lisha Lo, Amy Gajaria, Alene Toulany

    BACKGROUND: Youth with chronic health conditions often experience challenges during their transition from pediatric to adult care. Those with marginalized identities are likely to experience further disparities as they navigate structural barriers during their transition. However, the impact of the social and structural determinants of health (SSDOH) on outcomes for youth transitioning to adult care is not broadly understood.

     

    OBJECTIVE: In collaboration with 3 young adults with lived experience, this scoping review identified the SSDOH impacting outcomes for youth transitioning to adult care, particularly those experiencing structural marginalization, including Black, Indigenous, and 2SLGBTQ+ youth.

     

    METHODS: Databases MEDLINE, Embase, CINAHL, and PsycINFO were searched from the earliest available date to May 2022. Studies identifying associations between SSDOH and transition outcomes were included. Transition outcomes were categorized into clinically-relevant themes. Associations between SSDOH and transition outcome themes were described as significant (i.e., all studies showed a significant association between specific SSDOH and transition outcome, p<0.05), non-significant (i.e., all studies showed no significant association, p>0.05), and unclear significance (i.e., studies showed both significant and non-significant associations). Data were reported in accordance with PRISMA-ScR.

     

    RESULTS: 101 studies were included. Most studies reported on including Black participants (n=50), while few included Indigenous (n=7) and 2SLGBTQ+ (n=1) youth. Twelve social determinants of health (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, stigma) and 5 demographic characteristics (race/ethnicity, gender, illness type, illness severity, comorbidity) were examined. No studies examined the structural determinants of health or the impact of discrimination on transition. Gender (n=60) and race/ethnicity (n=41) were the most commonly studied. Of those, gender was significantly associated with communication, quality of life, satisfaction, transfer completion, and transfer timing. Race/ethnicity was associated with appointment keeping and transfer completion.

     

    CONCLUSIONS: Improved understanding of the impact of SSDOH on transition outcomes is needed to help inform interventions and mitigate health inequities. Future research should use an intersectional health equity lens to identify policies to promote equity during the transition to adult care.

     

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  • Amanda Higgins, Christine Cassidy, Jacklynn Pidduck

    Background: Transition of care is the process in which youth transfer their health care from pediatric to adult health care systems. Currently, there is very little done to standardize the transition of care, which can result in poor health outcomes for youth. Families transitioning from pediatric to adult care require support to encourage independence and confidence in their youth to take control of their own care. The You’re in Charge (YIC) program at IWK Health builds self-management capacity among youth and their families through goal setting, education, and peer-led activities. However, there is a need to develop an evaluation plan for the YIC program to monitor and evaluate its utility and impact on patient and health system outcomes. 

    Methods: The objective of the study was to co-design an evaluation toolkit for IWK Health’s YIC Program. We used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) Framework as an overarching evaluation framework. A co-design workshop was held with the YIC coordinator, Transition of Care (TOC) coordinator, and members of the TOC Committee (youth, parents, and health care providers) to co-design components of the evaluation toolkit. This was followed by a think-aloud exercise with four YIC participants (2 youth, 2 parents/caregivers) to test the usability of the evaluation toolkit. 

    Results: A multi-component evaluation toolkit was co-designed for the YIC program to use for ongoing evaluation. This included an evaluation survey for youth and caregiver participants, facilitators, and administration. Areas of focus for the evaluation were self-management goals, skills, and trust in the resources provided to them.

    Patient Partner Reflection: Being able to lead my own study was a result of the capacity building that took place when I was the lead patient partner on a qualitative study done on the youth, caregiver, and health care provider perspectives on the barriers and facilitators for transition. Moving from being a lead patient partner, to running my own study on a program I am involved with as a peer facilitator, and now mentoring new patient partners in studies evolving from the one I was the lead on has encouraged me to pursue health research as a career. The team support was unique and the collaborative approach was instrumental to how I have flourished as a patient partner and researcher. 

    Conclusion: This study provided a valuable resource for continued use beyond the project's end date. By working in a collaborative research approach with the YIC Program Coordinator and TOC Committee, the evaluation toolkit was more relevant and useful to meet the needs of the IWK Health team to use for ongoing evaluation and sustainability of the program.   

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  • Dayle McCauley, Lin Li, Alice Soper, Alison Luke, Jan Willem Gorter

    Background:

    Youth with chronic health conditions are known to experience gaps in care and unmet healthcare needs when they leave the pediatric system. To address the challenges youth face in transitioning to adult healthcare, a patchwork of programs, services, and resources have been implemented across Canada. The Transition Hub (the “Hub”), a pan-Canadian network of stakeholders (youth, families, researchers, clinicians), aims to improve the transition to adult healthcare on a national level. In a priority setting activity, the Hub identified that an environmental scan was needed to better understand what services are available and what gaps exist in supporting the transition to adult healthcare in Canada.

     

    The objectives of the environmental scan were: 1) to identify the scope of existing transition programs, services, and resources across Canada; and 2) to identify key gaps in the transition to adult healthcare.

     

    Description:

    This multi-method study used: 1) surveys to collect basic program information; and 2) semi-structured interviews to explore strengths, barriers, gaps, and strategies for improvement. The Hub was used as the primary method to recruit participants who were knowledgeable about transition services within their organizations.

     

    Fifty participants completed a survey and 23 participants completed an interview. The surveys reported on 45 programs and 3 resources from nine Canadian provinces. Most transition programs were in outpatient (72.3%) and hospital-based (66%) settings. Transition services were collaborative (e.g. overlap in care), client-centred (e.g. goal setting), or group-based (e.g. mentorship). Program outcomes included youth knowledge and autonomy, physical and mental health, and life skills.

     

    Many programs considered a successful transition to be multi-faceted, requiring a holistic and lifespan approach. Communication, collaboration, and multi-level support were identified as key program strengths. Major practice and research gaps included dedicated transition champions, quality indicators, and evaluation of the long-term effectiveness of transition programs and services. Patient and family stories can serve as a powerful driver for change, as well as framing transition as a health equity issue to garner support from the broader society. In addition to intrinsic motivators, external drivers are essential, such as standards of care, financial resources and incentives, and institutional accreditation.

     

    Significance

    This environmental scan consolidates program information, reported strengths, and lessons learned from a broad range of transition services across Canada. Results offer an opportunity to leverage collective expertise and wisdom to inform evidence-based advancements in transition services. Results will inform the strategic direction of the Hub by highlighting key gaps and opportunities for improvement, as well as contribute to the development of improved transition programs, services, and resources.

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  • Susannah Jenkins , Julie Herrington , Jane Manayathu Jones , Usha Chauhan, Julia Yole

    Background/Objectives:

    Health Care Transition (HCT) is a vulnerable time for adolescent and young adults (AYA) with chronic health conditions requiring a systematic approach for successful transfer of care. Canadian Pediatric Society (CPS) set core components of successful transition. In a large tertiary hospital in Hamilton, Ontario, HHS advanced practice (AP) practitioners completed a HCT survey comparing practices with CPS’s core components.

    Description

    The McMaster AP Transition Committee designed HCT survey aligning with CPS’s successful transition components.  Survey sent to 118 HHS AP practitioners March 2022. Independent data analysis completed in survey monkey.

     

    50% response rate (59/118), 31/59 (53%) from 23 disciplines indicated transition was relevant.  Majority 27 (87%) worked full time; 22 (71%) in pediatrics.  Thirty (97%) were nurse practitioners (NP).  Most, 15 (48%) worked for <5 years.  After two respondents dropped off, 15/29 (52%) indicated a structured transition program.  Most started transition at age 14 (33%) or 15 (28%).  Seven (39%) discussed transition 3-4 times prior to transfer.  Multidisciplinary teams (MDT) included NP’s (73%), pediatric & adult physicians (67%), social workers (60%), nurses (53%) and dietitians (40%). Only 3 (20%) had transition coordinators/navigators. Ten (67%) had adult/pediatric physician combined appointments and 8 (53%) ensured adult appointments were booked. Transition readiness was assessed in 7 (47%) programs using Transition Q4.  Eleven (73%) saw youth independently. Patient education was provided on adherence (80%), self-management (67%) social issues (60%), goal setting (53%), cultural differences between adult/pediatrics (47%) and privacy (47%). Comprehensive transfer note was provided in 9 (60%) programs. Of 8 adult practitioners, 3 (37.5%) indicated systems to prevent follow-up losses. Time was the primary barrier to transitional care for 17/24 (71%). Additional barriers included no MDT support on adult side (33%), no adult provider receiving youth (29%), no administrative support (29%) and lack of knowledge (25%). Majority 17 (71%) had no formal education on transition; education needs included outcome measures (63%) and clinical practice guidelines (59%).

    Significance

    AP practitioners at HHS have indicated transitional care occurs predominantly in two CPS components of successful transition: 1) Starting transition early and 2) Providing support before transition3.  Few practitioners indicated activities in the remaining components: 1) Creating an individualized transition plan, 2) Ensuring ongoing support after transition to adult care3 . Current barriers to providing care include time, lack of support and education.  Our study had a limited sample of only AP practitioners.  In order to build transition capacity and networks, multidisciplinary teams, administrators and patients should be included in future samples for the most accurate description of transition practices at HHS.

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  • Nicole Dendekker, Michelle Kregel, Andrea Andrade, Ana Suller-Marti

    Background/Objectives: Children with severe epilepsies are living longer which require adult clinics be ready to provide care. Parents of children with epilepsy have identified that seizures and their co-morbidities are a major concern in their children living independent lives. However, they face barriers and challenges transitioning into adult care. A specialized transition clinic with comprehensive care for complex medical conditions such as Drug Resistant Epilepsy (DRE) is ideal. In 2016, the Children’s Hospital, London Health Sciences Centre (LHSC) initiated a Comprehensive Epilepsy Clinic (CEC) within its epilepsy program to provide advanced diagnostics, and resources within a clinic setting for children with DRE. This clinic includes; epileptologists, nursing, social work, dietitian, and a community educator. The purpose of this project was to establish a combined pediatric/adult transition program into the CEC that could facilitate access for families of teenagers with DRE.

    Description: In 2019, a quality improvement project at Children’s Hospital was initiated to incorporate a combined transition program within the CEC. Stakeholders from the pediatric epilepsy team (Children’s Hospital), adult epilepsy team (LHSC), and transition services (Children’s Hospital) were identified. Information on transition was gathered from the literature and programs who were running transition services. There was scarce evidence on transition care within severe epilepsies. Teenagers who were 16 or older were referred to our Transition Navigator for discussions on social and financial matters and to help foster an appropriate level of independence as they move into adulthood. Teenagers and their caregiver would then also be seen within a combined Transition/CEC with an adult epileptologist who would be introduced by their pediatric counterpart and assume their care. The Transition Navigator would address further questions, connect to adult resources and provide transition readiness questionnaires at that time.

    Significance: A CEC model improves access to transition services in teenagers with DRE. This model ensures they have access to necessary medical, social and financial resources and the ability to stay connected to their community. Prior to this combined Transition/CEC there were no other comprehensive transition clinics for teenagers with severe epilepsies at Children’s Hospital, LHSC. Over the past 4 years there have been a total of 9 transition/CEC’s with 41 young adults. Among this cohort, multiple comorbidities were identified which include intellectual disability or learning delays 53% (n= 21), Autism Spectrum Disorder 17% (n=7), mood or behavioral conditions 34% (n=14) and cerebral palsy 7% (n=3). 29% (n=12) of patients have more than one comorbidity. Further research is needed to look at healthcare transition for teenagers with epilepsy to be able to provide the comprehensive care that is required for this complex condition.

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  • Olaf Kraus De Camargo, Thorsten Langer, Sebastian Friedrich, Gudrun Reeskau, Sunil Rodger, Jana Willems, Gloria Antonini, Beatrice Brigliadori, Erika Guastafierro, Matilde Leonardi, Nardo Nardocci, Anne Fournier, Jan Willem Gorter, Olaf Kraus De Camargo, Anna Swain, Nethmi Rajapakse, Alessia Marcassoli, Isabella Moroni, Giada Perinel, Anna Petruzza, Julia Frei, Rocio Gutierrez Rojas, Dayle McCauley, Homira Osman, Kinga Pozniak

    Background/Objectives: Care pathways for transition from childhood to adulthood is a well-described phenomenon that is receiving increasing attention in scientific and public health systems for many health conditions. However, the transition of patients with Duchenne muscular dystrophy (DMD) is still neither well-described nor defined and organized at international level with common and agreed pathways and indicators. This is from where the GrowDMD project is originating. DMD is a rare chronic debilitating disease. The period of transition from pediatric to adult care is particularly challenging for adolescents with DMD due to the progression of the condition at a time when youth typically strive for greater independence. This international study (http://www.growdmd.org) aims to explore the diverse experiences of young people living with DMD and their families in Canada, Germany, and Italy to answer the questions: 1. How do patients with DMD and their caregivers experience the transition of care? 2. What measures and strategies are currently implemented in the care organizations of participating countries to support and facilitate the transition of care? 3. How can the transition of care be improved?

    Description: This study utilizes an integrated knowledge translation process in which researchers, knowledge users, Patient Advocacy Organisations (PAOs) representatives, and patient partners collaborate across all stages of the research process. Conceptually, the study is guided by the World Health Organization (WHO) frameworks of International Classification of Functioning, Disability and Health (ICF) and the International Classification of Health Interventions (ICHI). Using a mixed methods design, this study consists of three phases across participating countries in English, French, German and Italian: (i) Scoping review of the literature and semi-structured interviews with individuals from 12 to 23 years of age living with DMD, their caregivers, and service providers to explore the transition of care experiences; (ii) Qualitative surveys informed by findings from the interviews to determine priorities for improvement in each country, and focus groups to identify potential solutions; (iii) Development of knowledge translation products. Data will be presented on the initial findings from the phase (i) scoping review and provide an overview of how these findings will inform the next stages of the research.

    Significance: The integrated nature of this project will allow us to co-create with patients, families, and clinicians a set of general recommendations, tailored to local contexts, that can serve as a model for the transition care path of patients with DMD.

    Funding Agency: The project received international (European Union's Horizon 2020 research and innovation programme under grant agreement N°825575) and local (Canadian Institutes of Health Research, Federal Ministry of Education and Research of Germany, and Ministry of Health of Italy) funding.

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  • Lin Li, Patricia Strachan, Nancy Carter, Jan Willem Gorter, Linda Till, Marcy White

    Background/Objectives:

    Increasing numbers of youth with medical complexity (YMC) are aging out of child-oriented systems (health, education, and social services) and entering adult systems, where their needs have been largely neglected. Current approaches to supporting the transition to adult services fail to consider the ongoing extensive involvement of family caregivers and the compounding effect of numerous service transfers that YMC inevitably go through. To better support these families, it is critical to understand how they manage the challenges associated with transition and what their recommendations are for support.

     

    The objectives of this study were to understand: 1) how families of YMC adapt to the youth’s transition to adulthood; 2) how contextual factors interact to influence this process; and 3) how transition can be better supported.

     

    Description:

    A qualitative explanatory case study design was used. The sample included YMC and their family members who lived in Ontario and had experience with the youth’s transition to adulthood and transfer to adult services. Data sources included semi-structured interviews, documents, field notes, and memos. Interview data was analyzed using reflexive thematic analysis, followed by theory-driven analysis informed by complexity theory and the Life Course Health Development framework. Documentary evidence was analyzed using directed content analysis. Two parent partners with lived experience contributed to study design, recruitment, data analysis, and knowledge translation.

     

    Twenty-one interviews were completed with 17 participants from 11 families. “Imagining, pursuing, and building a future” was the meta-theme that described families’ priorities, hopes, and fears for the future. In the context of this meta-theme, families had to adapt to physical, emotional, relational, and structural processes that made the transition difficult. Families adapted by engaging in tremendous amounts of work and advocacy, coping psychologically with the demands of transition and uncertainty of the future, and undergoing major life transitions.

     

    Significance:

    This study highlights the tremendous work that families shoulder to navigate through transition and advocate for services for YMC. At the practice level, families require more anticipatory guidance, advocacy, and accountability from their providers to ensure a smooth transition. Furthermore, key essential services, such as complex care programs, are missing in the adult system. At the policy and system level, more options are needed for housing, day programs, and home care for this population, as well as a system that provides supports based on the youth’s and family’s needs, rather than the type and level of disability. These findings should inform future strategies to support better transitions in care for YMC and their families. These strategies should optimize families’ natural adaptation processes by drawing on their strengths and supporting areas of greatest need.

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  • Kerry Koke, Marie Wright

    Background/objectives

    Across British Columbia (BC), there is a growing population of over 160 children and youth dependent on long-term ventilation. Until aged 18, patients are followed closely by the Home Tracheostomy and Ventilation (HTV) clinic at BC Children’s Hospital. However, there is no population-specific framework to support transition to adult services, and generic frameworks fail to address key elements of transition for this complex patient group. Feedback from patients and caregivers indicates that this transitory period can be stressful, confusing, and frustrating.

    The primary aim of this project is to create a specific transition framework for HTV patients which, within a year of implementation, is followed by all clinic patients aged ≥14 years. Secondary aims are to increase patient and caregiver satisfaction with the transition process and to ensure that patients are attached to an appropriate adult provider prior to HTV clinic graduation.

     

    Description

    A transition working group was established, incorporating HTV physicians and allied health professionals, research and quality leads, and patient partners with lived experience of transition.

    Current state analysis was undertaken to define current practice and identify areas for improvement, including a five-year chart review of HTV clinic transition practices and collection of qualitative data via interviews and electronic surveys.  

    Interested parties were invited to participate in workshops and structured interviews to discuss the challenges experienced during transition. Participants included health and social care providers (HSCP) working with HTV patients, HSCP involved in transition of other complex patient groups, and recently transitioned HTV patients and caregivers.

    Electronic surveys were distributed to adult respirologists across BC to ascertain their referral practices and capacity to support HTV patients, and to transitioned HTV patients and caregivers to determine their satisfaction with the transition process.  

    Data from the chart review, interviews, and surveys are currently being analysed and compared to published standards of care for transition of medically complex patients. Using the knowledge acquired, the working group will devise a new patient-focused and sustainable transition framework, with clinical resources to support its implementation.

    Post-implementation PDSA cycles will include audit of transition pathway use and adult provider attachment, and re-survey of patient and caregiver satisfaction.

     

    Significance

    This initiative will make transition more structured, equitable, and better signposted for HTV patients and healthcare providers. We anticipate that the new framework will improve patient satisfaction and medical stability during this period of great change and uncertainty. The project will also establish a collaborative network of HSCP involved in the care of HTV patients, which will have further-reaching implications for the quality of care delivered.

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  • Dolly Menna Dack

    Background/Objectives:

    Youth-aged patient partnership has had a long history at Holland Bloorview; in fact the Youth Advisory Council is celebrating more than 25 years in existence. Over the last five years, we embarked into the Transition Strategy, which aimed to create pathways to facilitate the transition from paediatrics to adulthood. Within the Transitions Strategy there were focused streams of work, one of which was the Youth Engagement Strategy. The Transition Strategy provided an opportunity to expand and embed the work being done with our youth-aged patient partners. By fostering a culture of partnership and collaboration the Youth Engagement Strategy has actualized the hospitals’ core values in the creation of the framework and activities undertaken. By fostering a culture of collaboration, we creatively transformed ideas into impact.  

    Description:

    This poster will present 5-year data gathered from the multiple activities of a Canadian paediatric rehabilitation hospital’s youth engagement strategy. These activities focus on opportunities for youth to build leadership skills, the creation of intentional activities for peer-to-peer connection between trained youth mentors and current clients of the hospital and, the continuing evolution of the novel Youth Facilitator role.

    The Youth Facilitator (YF) role was introduced more than 15 years ago as a demonstration project to support clients and families in their preparation for transition to adulthood. This unique role speaks to the organizational commitment of EDI and one of the ways to be a leader in the employment of persons with disabilities. The YF uses lived experience of growing up with a disability and clinical judgement to facilitate clients and families to set meaningful goals related to transition to adulthood. Now this role has expanded and includes 5 permanent roles in the hospital.

    Peer-to-Peer Connections data for our inpatient programs – Teen Lounge drop-in, Bedside Youth Mentoring (new), and our ambulatory program will be presented along with the facilitators for success and client satisfaction data for the new Bedside Youth Mentoring demonstration project.  

    Significance:

    The information presented in this poster represents the actualization of a commitment to partner in meaningful ways with youth leaders. Over the five years of the Transition Strategy, we have: expanded and embedded the novel Youth Facilitator role, completed five arts-based projects, bringing to life the experience of transitioning to adulthood in mixed media, podcasts, photography and short stories, created growth opportunities for the youth leaders through membership on organizational committees, project teams and through paid employment roles in the hospital.

    This work demonstrates that it is possible to successfully integrate Youth Leaders into the work done by Canadian health care institutions in ways that are mutually beneficial to the organization, clients & families and the Youth Leaders.

     

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  • Andrea Lauzon, Laura Langer, Mark Bayley, Sarah Munce, Dorothy Luong

    BACKGROUND/OBJECTIVES:  Clinicians have reported an increase in the number of youth presenting with mental health symptoms, specifically, anxiety and depression symptoms. The prevalence of anxiety and depression in young adults (YA) with cerebral palsy (CP) and brain injury (BI) is not well studied though some literature suggests YA with CP are at greater risk of mental health issues.

    1.  To understand the levels of levels of depression and anxiety symptomology and comparison between a sample of YA with CP and BI

    2. To understand the level of community integration and comparison between YA with CP and BI

    3.  To increase awareness of common medical diagnoses (chronic medical conditions) seen in participants with CP and BI and a positive mental health screen

     

    DESCRIPTION:    Living independently fully engaged (LIFEspan) Clinic, is a Nurse Practitioner led clinic facilitating transition of youth with CP and BI from paediatric to adult rehabilitation. Participants in the study were recruited from 640 current patients between 18-58 years old, diagnosed with a childhood onset disability of CP or BI, no comorbid moderate to severe developmental disability, and registered with LIFEspan Clinic. Between 2017 and 2022, 342 eligible participants consented to participate.  The study was a cross sectional quantitative study.  Data collection involved a chart review, clinic assessment, and self-assessments using Patient Health Questionnaire-4 (PHQ-4) and Community Integration Questionnaire (CIQ). Data was collected over baseline and 3 follow-up visits. Demographic statistics were performed including group means and frequencies counts; student t-tests and Chi squares analyses were used to examine group differences and associations between variables. Linear mixed effect models and general estimation equations were used to examine trends over time.

    SIGNIFICANCE:  342 participants with a Visit 1 were analyzed, 43.9% female, 57.9% diagnosed with CP, 42.1% diagnosed with BI, mean age 23.1 (SD 4.3) . The PHQ-4  median score was 2 (IQR 0 - 5), where 3 is a positive screen for anxious or depressive symptoms.  45.5% (CP) and 47.7% (BI) screens were positive PHQ-4.  CIQ results showed that YA diagnosed with a BI were more integrated in the community than YA diagnosed with CP.   40% of males versus 55% of females experienced pain; there were no significant differences in males versus females in terms of depression scores, as measured by the PHQ-4. Lower CIQ scores were associated with depression diagnosis as time progressed (p=0.05). Almost half of the PHQ-4 screens were positive and 14.3% of participants taking antianxiety/antidepressants. YA with CP or BI may have higher rates of mental health issues and lower rates of community integration in comparison to peers.   Our study results supported the importance of screening for mental health and community integration.

     

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  • Anne Fournier, Sylvie Gérin-Lajoie, Laurence Leser

    In 2018, the Spina Bifida and Hydrocephalus Association of Quebec has developed a web-based assistant that helps youth manage their health and confidently navigate their transition to adulthood. Notes2Self.ca or Pensatout.ca (in French) is a mobile website that responds to the challenge of the transition of patients with special health care needs such as spina bifida/hydrocephalus.  The application was later adapted for youth with congenital heart disease. 
    
 
    The challenges of transition such as finding a new care team, gathering the information and materials needed for care, establishing routines and good lifestyle habits, paying attention to the warning signs of complications and knowing how to react to them, planning appointments, social life and studies issues are some of the aspects taken care of by application, a tool that combines check list functions, planning tools and practical resources on a platform that young people love, their mobile device.  
    
 
    Notes2Self offers young people the opportunity to complete missions:
    1. Understand and meet their basic needs: care team, medication, outpatient and home health care routine, equipment, transportation.
    2. Watch over their health: do small express tests that allow them to go around everything, both in terms of physical and mental health, and to remain vigilant to possible complications. The tool allows them to program reminders in their diary - and the young person occasionally receives emails inviting them to carry out a short self-examination.
    3. Develop healthy lifestyle habits and take care of their well-being: plan leisure activities, regular sports activities, take an interest in their diet, etc.
    4. Plan their future: finally, the tool encourages young people to think about their future plans, higher education, founding of a family, etc.
    
 
    Notes2Self also allows youth to engage in conversations with people, whether professionals or others, to access a host of resources, and to prepare action plans to better achieve their personal goals.
    
 

    Since the launch of the application 7800 francophone and anglophone youth with spina bifida and/or hydrocephalus have used it. They commented « Pensatout est l’outil qu’il nous fallait pour mieux aborder notre transition; Pensatout m’aide à m’organiser ; Je peux utiliser Pensatout selon mes besoins »

    
 
    The adaptation for youth with congenital heart disease was launched in February 2023 and the comments so far are encouraging.
    
 
    In conclusion, this ludic application developed for the transition of youth with spina bifida/hydrocephalus and congenital heart disease is a promising tool to help these special populations succeed in all aspects of their life during this important phase.  The application can also be modified to suit other chronic conditions. 
    
 

     

    
 

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  • Amanda St. Dennis, Many People, Jessica Geboers

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  • Marie-José Clermont, Juliette Durocher, Eric Racine, Anne Fournier, François Ouimet, Rocio Rojas, Nicole Padley

    Background and objectives:  Transition from pediatric to adult care is a challenging moment in the life of youths living with a chronic condition. Many transition programs are oriented towards maximizing compliance and treatment adherence, thereby placing high value in autonomy and independence. There is a need to expand the focus of current research and interventions to engage youth as persons with preferences and aspirations to a flourishing life. Also, less material is available in French and developed in culturally appropriate ways for French speaking Canadians. We undertook a participatory action research study to better understand the needs and aspirations of youths with respect to the transition, including their well-being and flourishing. We also aim to act based on these results to develop a participatory intervention and related evaluation of the initiative.

    Description: Parachute is a participatory action research study involving (to date) semi-structured interviews with youths, parents and healthcare professionals and an online survey with youths and parents. The current steps – on which we will also be able to report partly on in December – include the co-development of transition video content with youth and a participatory seminar for healthcare professionals. Semi-structured interviews (N=54) were conducted via Zoom and audio recorded with youths, parents and healthcare professionals recruited from four clinics in a pediatric hospital. The online survey was tailored to assess transition readiness and a series of questions about needs and priorities for transition (e.g., expectations, preferences for modalities of transition) with comparative perspectives between youths and parents. Participatory video development is ongoing and will involve numerous meetings with a designated task force, film-maker crew, and an advisory committee of parents and healthcare professionals.

    Significance: Interview results show that concerns about the transition of care cluster around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to pediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., knowledge and information about the transition, parental involvement in healthcare) were identified with corresponding recommendations to address them. These salient concerns touched upon important dimensions of human flourishing (e.g., environmental mastery, autonomy). The flourishing and potential of youths is affected by suboptimal transition practices. We will discuss the implications of our findings, including new survey results and video content available by the time of the meeting, about key aspects of human flourishing. We will also take this opportunity to reflect on the value and challenges of participatory action research in the context of transition.

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  • Laura Bowman, Carolyn McDougall, Danielle D'Alessandro

     

    Background/Objectives: Youth with disabilities and their families move through many transitions across multiple areas of their lives, with increasing frequency and intensity as they approach adulthood. Each transition brings with it new and diverse system partners, funders, and service providers, requiring youth and families to navigate multiple requirements, advice, and deadlines. Navigating these transitions can be stressful, even overwhelming for youth, families, service providers, and systems. Preparation, information, and support all contribute to smoother transition experiences across the board. So we are left with the task of considering how we might create systems that prepare, inform, and support the various contributors to youths’ transitions throughout and out of the pediatric health and rehabilitation systems. 

    We propose a multi-level, integrated, collaborative pathway model to meet the complex and inter-sectoral needs of youth and families as they move towards adult life. Based on our Employment Participation Pathway model built for youth with disabilities and drawing from our 15 years of experience in connecting clients, services, and organizations, we will present a framework for consideration in other program and service areas facilitating transition for youth with disabilities and their families. 

     

    Description: In this poster, we will present our employment pathway model, drawing particular attention to the following areas: (1) a start-early approach to building skills, knowledge, and outlooks related to the transition destination; (2) person-directed planning and meaningful inclusion of client/family voice in their own decisions; (3) progressive and evolving support to meet the resources, knowledge, and experiential needs of clients and families; (4) collaboration with community partners to consolidate offerings and amplify what is already working; (5) intentional advocacy to build policies and community-level supports for transition needs; and (6) evaluation and research to support ongoing growth. While all of these 6 nuanced areas combine to create supportive and progressive pathways to prepare clients, families, service providers, and systems for change, investment in any one of the areas can help organizations and service provider teams to foster meaningful transition-to-adulthood experiences. 

     

    Significance: The significance of our pathway framework is twofold. First, it highlights the various elements that combine to make a meaningful pathway of services so that readers can consider what they might build, and also what they might already have. Once readers consider what they are already offering, they can consider who in their network may offer elements that they do not, and build meaningful connections that respect available resources and promote mutual growth. 

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  • Karen LeComte, Jan Frew, June Albrecht , Derek Human , Brian Sinclair, Jacalyn Brown, Selena Chen, Alexia Gillespie, Jasmine Grewal, Gnalini Sathananthan, Maryam Zareei

    Background:

    Approximately 0.8 - 1% of the population will be born with Congenital Heart Disease (CHD) -- a structural heart defect present at birth. Medical progress over the last 60 years has generated a growing population of youth with CHD who will require the specialty care provided by an adult congenital heart disease (ACHD) multidisciplinary team. The longitudinal specialty cardiac care provided across the life span supports the best outcomes and reduces gaps in care that are associated with increased morbidity and mortality rates.

    As a result of the COVID 19 pandemic, pediatric CHD patients in British Columbia experienced delayed transfers to the Virani Provincial Adult Congenital Heart (VPACH) program. The post pandemic surge of individuals requiring ACHD care, plus implementation of an electronic health record connecting patient records across the pediatric and adult clinics, created the opportunity to redesign and optimize an ‘attachment process’ to maintain connections with youth at risk of gaps in care.

     

    Description:

    This quality improvement initiative will describe a structured approach to support individuals and families in ‘the gap’ -- the time youth spend in the transfer stage post final clinic visit in pediatrics and prior to the first appointment in the adult clinic. The goal for this project is to over come barriers to attachment by supporting the ongoing transition process and by providing information for knowledge development and encouraging self management skills

     

    The key components of this initiative includes:

    • Creation of a ‘push system’ of information flow from the pediatric clinic to VPACH.
    • Implementation of an anticipatory guidance document to make transparent the role and expectations from adult clinic.
    • Early initial telephone contact to verify contact information and establish the relationship between youth/family and the VPACH clinic.
    • Supplying a welcome package to support ongoing understanding of CHD condition and maintenance of a healthy lifestyles.
    • Scheduled telephone or virtual contact to check in on progress with transition process supported with a standardized transition note to document progress.

     

    Significance:

    Initial feedback is that this standardized process supports youth/families in ‘the gap’ – a potentially vulnerable period that places individuals at risk for lapses in cardiac care. It is important in this current environment where increases in demand for services coupled with unchanged resources require resourcefulness in delivery of transition care.

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  • Angie Lim

    Angie Lim, RN, PhD(c), MN, BScN, BSc 

    angie.lim@sickkids.ca 

    SickKids Hospital 

    Toronto, Canada 

    Background/Objectives:

    The healthcare transition for adolescent and young adult (AYA) organ transplant recipients is a critical yet understudied period, marked by a shift from pediatric to adult-focused care. This transition process presents unique challenges, including adherence to immunosuppressive regimens and addressing psychosocial factors that impact long-term graft survival and patient well-being. The primary objective was to understand how AYAs prepare for and engage in the transition process. The secondary aim was to identify strategies for healthcare providers to support their psychosocial well-being.  

    Description:
    A constructivist grounded theory, Riding the Wave or Change: Transforming Through Transition, illustrates the complexity of AYA transplant recipients' experiences. This mid-range substantive theory has significant implications for practice, providing valuable insights for pediatric and adult healthcare providers to better support AYA patients and their families during this critical period. This research also fills a gap in the literature by addressing the underrepresentation of nursing voices in transition research and enhances nursing knowledge on the transition experience that can be used to inform policymaking, practice, and research in the field of healthcare transitions for AYA organ transplant recipients.  

    Significance:

    Solid organ transplantation is a lifelong condition that necessitates continuous medical management, rendering the experiences of AYAs who navigate these transitions of utmost importance. This study provided unique insights into the perspectives of AYAs themselves, as well as the viewpoints of their family caregivers and healthcare providers to foster the evolution of transition services. By harnessing the insights gained from this study and applying them to practice, we can strive towards creating a more thoughtful, responsive, and effective healthcare environment for AYAs with solid organ transplants as they navigate the complex journey of transitioning to adult-focused care. This study offers valuable insights into developing self-management skills throughout this process, equipping healthcare providers with a compass to navigate the complex landscape of supporting AYA transplant recipients as they navigate the uncharted seas of adult care. The findings derived from this study hold substantial practical implications for AYA transplant recipients, their families, and healthcare teams to inform future research endeavours and potential avenues for enhancing the experiences of AYAs during their transition to adult care. By cultivating a more comprehensive understanding of the challenges and triumphs experienced by AYA transplant recipients, we can contribute to the ongoing development of responsive and supportive healthcare practices that cater to the unique needs of this population. 

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  • Sandra Aiello, Navreet Gill, Conall Morgan, Rafa Alonso-Gonzalez, Danielle Massarella

    Background/Objective: The SickKids Cardiac Transition Program was implemented in August 2020, to support adolescents and young adults (AYA) with congenital heart disease (CHD) aged 14-17 years old, transitioning from pediatric to adult cardiac care. AYA are provided nurse-led, one-on-one, in-person and/or virtual, transition education sessions with a focus on CHD knowledge, self-management behaviours and self-advocacy skills. Upon completion of each session patient satisfaction, a common indicator of successful transition, is assessed. Thus the goal of this quality improvement project is to describe patient satisfaction with the Cardiac Transition Program.

     

    Description: To assess patient satisfaction with the cardiac transition program, as per the program’s quality improvement evaluation plan, a 25-item survey was adapted from a pre-existing, SickKids transition program. The survey was developed in REDCap (Research Electronic Data Capture), a web-platform designed to manage online databases. Survey items included overall satisfaction with education sessions, satisfaction with session content, and likelihood of recommending the program to AYA with CHD. A link to this online, optional, anonymized survey was emailed to AYA within 24 hours of their cardiac transition education session. A total of 120 survey responses were received from AYA from October 2020 to April 2023. Respondents were satisfied with their overall cardiac transition education session (99.2%), felt they received enough information (97.5%), would recommend the sessions to others (94.1%), and felt the sessions addressed their questions (99.2%). Of the 120 responses, 23 evaluated virtual transition sessions. These respondents felt virtual sessions were convenient (95.7%) and economical (86.9%). However, 43.5% felt neutral about attending future virtual transition sessions. Sessions were most liked because they were easy to follow, provided tailored content, were informational, and encouraged independence. Participants indicated that they least liked the time it took to complete each transition education session.

     

    Significance: Assessment of patient satisfaction is a necessary component in the evaluation of program delivery and content, to ensure the program is engaging and meets the needs of patients. Overall, most participants in the SickKids Cardiac Transition Program report being satisfied with the transition education sessions. While satisfaction is an important indicator of program success, future program evaluation will consider indicators such as, patient transition readiness, quality of life and CHD knowledge.

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  • Natasha Bruno, Eyal Cohen, Kayla Esser, Alene Toulany, Julia Orkin

    Background/Objectives: Transitioning youth with medical complexity (YMC) to adult health care poses significant challenges, demanding extensive effort and collaboration among paediatric and community providers, YMC and their families. Our objectives are to: (1) describe the feasibility of implementing a tri-partnership virtual handover involving the paediatric team, family physician and YMC/caregivers, (2) explore experiences with the tri-partnership virtual handover.

    Description: We will discuss the rationale, methods, findings, and implications of our feasibility study designed to facilitate a smooth transition for YMC in the Complex Care program at The Hospital for Sick Children. We used a descriptive, pre-post, mixed methods, prospective study design. The tri-partnership virtual handover consisted of a collaborative meeting involving the paediatric team (nurse practitioner and paediatrician), YMC, caregiver, family physician, and other relevant clinicians. This virtual handover served as a platform to prepare for transition and encompassed a comprehensive review of several key elements: (1) the YMC’s personalized care plan, medications, and technologies, (2) sub-specialist referrals, (3) allied health and community resources, (4) funding applications, and (5) questions and action items. A total of 19 tri-partnership virtual handovers were conducted. Participants were asked to complete a post-handover questionnaire to assess the feasibility of the intervention. Semi-structured qualitative interviews were conducted to explore perceptions of the intervention and the broader transition process. We found that tri-partnership virtual handovers were feasible, acceptable, accessible and valued among caregivers, family physicians and the paediatric team. Five themes were identified from the interviews including: (1) impact of the tri-partnership virtual handover, (2) importance of involving the family, (3) defining roles and setting expectations, (4) gaps in adult care, and (5) suggestions for improvement.

    Significance: Tri-partnership virtual handovers are a novel and effective approach to enhance communication, foster mutual understanding, and facilitate seamless transition for YMC among the paediatric team, family physician and caregivers.

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  • Michelle Batthish, Karen Beattie, Liane Heale, Tania Cellucci

    Background: 

    The transition from pediatric to adult rheumatology involves acquiring higher level of independence. This transition period is associated with poor outcomes, prompting the development of transition programs to improve patient self-management skills. We aimed to assess how goal setting affects changes in transition readiness over time among adolescents with juvenile idiopathic arthritis (JIA) and juvenile systemic lupus erythematosus (jSLE). 

     

    Methods: Individuals with JIA and jSLE (age 14-19) were recruited from the pediatric rheumatology transition clinic at McMaster. Participants completed the TRANSITION-Q, a validated, self-administered questionnaire which assesses healthcare self-management skills, at the time of consent and at subsequent clinic visits. Questionnaires were scored from 0-100 with higher scores reflecting higher skills. Goal setting with a member of the healthcare team is based on responses to individual. 

     

    Results: Among 81 respondents with ≥1 follow-up, 52 (64%) were female, mean (SD) age 16.1 (1.2) years, and 67 (82%) had JIA. The mean baseline TRANSITION-Q score for females was significantly higher than males (60.4 vs 52.6; p=0.005). Over time, the mean increase in scores was similarly between sexes at follow-up (66.5 vs 58.8). 

     

    Conclusion: The TRANSITION-Q is a validated tool that can be used to track transition readiness. The scores can be longitudinally tracked and used to help set goals to guide self-management skills improvement. Baseline transition readiness was higher in females. Males and females do not appear to have the same trajectory of improvement across age groups, suggesting transition requires an individualized approach to self-management. 

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  • Jennifer Stinson, Tieghan Killackey, Fareha Nishat, Ellen Elsman, Lauren Kelenc

     

    Transition Readiness Measures for Adolescents with Chronic Illness:

    A Scoping Review of New Measures

     

    Tieghan Killackey1, Fareha Nishat1, Ellen Elsman1, Lauren Kelenc1, Jennifer Stinson1,2,3

     

    Affiliations: Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, Canada1; Institute of Health Policy, Management, and Evaluation, University of Toronto2; Lawrence S Bloomberg Faculty of Nursing, University of Toronto3

     

    Poster submitted by: Tieghan Killackey – tieghan.killackey@sickkids.ca

    Poster presenter: Dr. Jennifer Stinson – jennifer.stinson@sickkids.ca

     

    Would like to be considered for best poster award.

     

    Background/Objectives:  The transition from pediatric to adult care settings for adolescents and young adults living with chronic conditions can be challenging and has been associated with declines in health and access to care. Well-validated measures of patients’ transition readiness are critical, both for use in the clinical setting and to rigorously evaluate transition support programs for the purposes of research and health care quality improvement. This review aimed to build off existing reviews and 1) identify and describe all newly developed measures for the assessment of transition readiness for youth with chronic illness from the period of 2018-2022, and 2) evaluate their measurement properties and identify gaps in measurement testing.

     

    Description: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL and PsychINFO to identify articles developing and validating transition readiness in individuals aged 12-26 years with a chronic illness between 2018-2022. Two reviewers independently selected articles for review and assessed quality of measurement properties. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) updated criteria for good measurement properties was applied to rate the sufficiency of each measurement property. 22 studies met inclusion criteria reporting on 21 different tools. 9 studies reported on the development and evaluation of a new tool, and 13 reported on the adaptation, modification, and/or translation of an existing tool. The majority of adapted tools were translations and adaptations of the Transition Readiness Assessment Questionnaire (TRAQ) (n=7). While some of these studies demonstrated sufficient internal consistency, content validity, or structural validity, none met criteria for sufficient reliability, hypothesis testing or validity, and responsiveness was not assessed in any studies.

     

    Significance: Many new transition readiness measures continue to be developed in recent years, yet few have undergone rigorous psychometric evaluation. The TRAQ was the existing measure most often used as a model for developing new or modified tools. There remains a clear need for further validation of existing measures of patients’ readiness to transition.

     

     

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  • Barb Galuppi, Jessica Geboers, Jan Willem Gorter, Karen Cook, Aline Bogossian, Lin Li, Alene Toulany, Paula Robeson, Danijela Grahovac, Dilshad Kassam-Lallani, Dayle McCauley, Anne Fournier

    Background/Objectives: Youth with Special Healthcare Needs (YSHCN) are at risk for experiencing service fragmentation and care gaps when transitioning from pediatric to adult services. A poorly planned and unsupported transition can lead to negative care experiences, poor health outcomes, costly hospitalizations, and health and social inequities. Since it was declared in March 2020, the COVID-19 pandemic has impacted nearly every aspect of our usual ways of living, creating even more disruption for YSHCN. We heard in practice from YSHCN and their parents that the pandemic had has had both negative and positive impacts on health and care experiences. However, it is unclear—beyond anecdotal evidence—how the pandemic has impacted YSHCN during their transition from pediatric to adult services. A better understanding of these impacts can be leveraged to optimize interventions to support the transition to adult services, while preserving the positive changes to health care services that came with the pandemic.

    In this patient-oriented research project, researchers, young adults, and parents have partnered to explore the impact of the pandemic on YSHCN between 16-24 years of age, during their transition to adult services. We aimed to understand the positive and negative experiences in healthcare transitions as well as co-occurring life transitions.

    Description: In Step 1 of the study, we conducted 21 interviews (17 English, 4 French) with YSHCN and their families. We used a rapid approach to qualitative analysis of interview data, which identified the ways in which the COVID-19 pandemic impacted the health of YSHCN during the transition to adult services. In Step 2, we developed a quantitative survey to expand and quantify the challenges and opportunities experienced by YSHCN and their families and to explore differences based on age, sex and gender, culture, ethnicity, and health conditions. The survey was informed by findings from Step 1, a literature review on the impacts of the COVID-19 pandemic on the lives of YSHCN, and input from the scientists, health care providers, young adult and parent partners on our research team and in the wider Children’s Healthcare Canada Transition Hub network. Available survey results from up to 500 YSHCN and families will be presented as: i) solutions that are working, ii) solutions that should be started, and iii) ideas for the future.

    Significance: Conference attendees will be invited to join our final end of study Knowledge Translation (KT) activity, a presentation and discussion of study findings during a Children’s Healthcare Canada Town Hall to be scheduled in December 2023/January 2024. From our collaborative work to gain a richer understanding of the pandemic experience, we aim to make recommendations to help improve healthcare experiences and transitional care interventions in the future.

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  • Michelle Roy, Judy Heilik, Leah Hammond, Curtis Perrott

    Background/Objectives: Sustaining new clinical practices following their implementation is a significant translational research challenge in healthcare centres. Recent conceptualizations move away from thinking of sustainability as the endpoint to see it as a dynamic process where practices are implemented, tested, and refined in the settings in which they are delivered.  At our rehabilitation hospital, routine program audits were introduced to both monitor the adoption of new pediatric-to-adult transition (PAT) practices and to trigger Plan-Do-Study-Act (PDSA) cycles to allow for adaptation of practices over time.

    Description: As part of a dedicated PAT improvement project, our hospital implemented PAT best practices across 14 clinical programs. Each program developed a tailored implementation plan (IP), designed to meet the unique clinical needs of their patient population. Programs were supported during the planning phase to ensure the proposed practice changes were feasible and inclusive. Following creation of the IP, an auditing checklist and audit schedule were developed by the PAT project lead and Transition Social Worker (TSW). The audit process included three steps: (1) TSW audited a random selection of up to 10% of patient charts and assigned a score based on evidence of completion. (2) TSW met with each program lead to discuss audit results. When audit scores were lower than 100%, the TSW initiated a PDSA cycle to adapt and improve implementation strategies. (3) The IP and audit checklist were updated accordingly.

    Eleven programs identified auditable PAT activities, ranging from 4-13 activities per program (M(SD) = 6.8 (2.7)). Those included both ‘one-time’ activities (M(SD) = 4.9(2.0); range=3-9) and ‘ongoing’ activities (M(SD) = 2.4(1.2); range =1-4,). The first round of audits is nearly complete with 10/11 audits performed. Average overall score for completed audits was 46.9% (SD =27.7%). Most programs (5/8; 62.5%) had not completely implemented one-time activities. PDSA cycles were initiated for nine programs and completed for seven programs.
     

    Significance: New clinical practices must be maintained and allowed to evolve in order to be sustained. To our knowledge, we are the first centre in Canada to simultaneously implement tailored PAT best practices across multiple pediatric programs. Using dedicated TSW time to conduct systematic and individualized audits and subsequent PDSA cycles as a means of continuously adapting new practices is a novel and accessible approach for health care centres. Initial audit data reveals that follow-through of intended practices is low. The integration of PDSA cycles into the audit process appears to facilitate identification of barriers and guide improvement of implementation plans. Ongoing monitoring of this project will be used to determine how many audit cycles are needed to support the implementation of all intended program activities and whether implemented activities are sustained over time.

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  • Angela M. Senevirathna, Patricia Basualto, Ash Seth, Gina Dimitropoulos, Jennifer D. Zwicker

    Background

    Neurodevelopmental disabilities (NDD) are a group of disorders that affect brain development and function (American Psychiatric Association, 2013). These disabilities can have a significant impact on an individual's daily life, affect their inclusion in society and may require specialized services and supports, particularly for youth who are transitioning from pediatric to adult services (Cobb & Alwill, 2009). However, there is a lack of comprehensive data and information on the transition from pediatric to adult services. The lack of data and information on health outcomes for individuals with NDD has been identified as a significant challenge (Horner-Johnson et al., 2022). Without comprehensive information, it is challenging to develop effective strategies to support individuals with complex needs and to ensure that services are delivered equally (Fisher et al., 2007). 

    Objective

    Identify the barriers that youth with NDD face when transitioning from pediatric to adult services. This study seeks to gain a better understanding of the factors that impact access to services among a heterogeneous NDD population.

    Description

    The study will utilize a mixed methods approach. Quantitative analysis will use a linked administrative dataset (n~100,000) from British Columbia and will identify pre-transition (15-18 years) and post-transition (19-25 years) factors impacting access to adult services. Individual and paired t-tests will be conducted to test for significant changes between groups and across transitions. Semi-structured interviews (n~13) will be conducted with service providers and decision-makers in CLBC and thematic analysis (Braun & Clarke, 2006) will be used to identify themes related to disparities in accessing services within the data, allowing for the exploration of complex phenomena in-depth. Data will be analyzed through a process of coding and categorizing (Nowell et al., 2017). Themes that emerge from the analysis will be used to inform the discussion of the quantitative findings.

    Results may indicate whether there is a significant change in healthcare utilization in the transition period. Interviews may reveal that youth with NDD face barriers in accessing appropriate healthcare services during the transition to adult care. These barriers could include limited availability of specialized providers, lack of coordination between paediatric and adult healthcare systems and difficulties in navigating the complex healthcare system.

    Significance

    The impact of this study lies in its potential to provide a robust understanding of the healthcare utilization patterns of individuals with NDD during the transition period and a deeper understanding of the contextual factors that may influence experiences during the transition period. Overall, the impact of this study could be significant in improving the lives of individuals with NDD and their families and in advancing the field of neurodevelopmental research.

    Please considerforbest poster award

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  • Dorothy Luong, Tomisin John, Sarah Munce, Katherine Bailey, Claire Barber, Michellle Batthish, Danijela Grahovac, Jan Willem Gorter, Kristin Cleverley, Gina Dimitropoulos, Sofiya Goroshko, Ruth Grimes, Beverly Guttman, Michèle L. Hébert, Dmitry Khodyakov, Lisha Lo, Dorothy Luong, Laura MacGregor, Sarah Mooney, Geetha Mukerji, Jacklynn Pidduck, Rayzel Shulman, Lisa Stromquist, Patricia Trbovich, Alene Toulany

    Background: The majority of current quality indicators for transition are patient-centred metrics, however, the involvement of youth and caregivers in their development has been overlooked. When included, youth and caregivers are often outnumbered by clinicians, making them less likely to raise their concerns and priorities, which often differ from those of the healthcare team. Youth not only want to be involved in their transition care planning, but also in designing and participating in transition research. Engaging youth and caregivers in both the design and implementation of transition research holds great potential to enhance its impact and relevance, benefiting all youth receiving transition services. Additionally, this inclusive approach helps shed light on equity issues within the transition process. An integrated knowledge translation (iKT) approach, defined as an active and dynamic collaboration between researchers and knowledge users, is one way to actively engage youth and caregivers throughout the research process.

    Objective: To incorporate an iKT approach into a study aimed at establishing a universally applicable set of consensus-derived quality indicators for transition to adult care applicable across chronic physical, developmental, and mental health conditions, clinical care settings, and health jurisdictions in Canada.

    Description: An iKT panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team on a study that will produce a key set of quality indicators to evaluate and inform action to improve transition to adult care for youth and their families equitably in Canada. The iKT panel will convene regularly and actively participate in a process to ensure that the study methodology, materials, and knowledge dissemination strategies are suitable and reflective of the perspectives of youth and their families. Our team will explore the strategies needed to build meaningful partnerships and engagement in research with these knowledge user groups and help to lay the foundation for impactful advancements in the transition field.

    Significance: Determining the most beneficial metrics from diverse stakeholders, with a particular emphasis on the perspectives of youth and caregivers, is a fundamental step to identifying areas for improvement in transition, evaluating current processes, benchmarking across jurisdictions, and optimizing health outcomes for youth with chronic conditions. Monitoring engagement strategies and processes and outcomes as part of this project will identify important practices for building meaningful partnerships and engagement in transition research, enabling us to cultivate a more inclusive and effective framework for supporting youth and caregivers.

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  • Aileen Blakeney

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  • Negar Vakili, Lori Wozney

    Background/Objective: The transition from child to adult mental health services is a vulnerable time associated with treatment disengagement and illness progression. Text-message based interventions might be leveraged to support motivational, informational, and behavioural needs of youth during this time. Evidence about youth preferences for intervention content and functionality are scarce but necessary to inform better service design. The primary goal of this study was to investigate the level of consensus among youth on important content, technology features, and engagement supports for a transition-focused text message service.

    Description: A cross-sectional online survey of youth in Canada aged 16-26 years collected information on demographics, current levels of technology use, importance ratings on message content, technical features, and barriers and enablers to engagement. Participants (n=100) were ethnically diverse (51% from non-white European background), aged 20-26 (59%), and who had first accessed mental health services when they were between 13-19 years of age (62%). The majority (90%) identified as daily text message users. A high level of consensus on importance ratings was reported in 45% of message content items. A high level of consensus on importance ratings was reported in only 20% of feature and functionality items. For 27% of youth, the most significant enabler for engaging with a transition-focused text message intervention was personalization of texts.

    Significance: This study is the first to systematically document youth preferences for a text message intervention aimed at supporting the transition to adult mental health and addictions services. Results of this study indicate that there are clear user preferences for certain kinds of message content over others. Health care organizations and service developers looking to leverage next-generation text message interventions for youth need to consider how low levels of consensus on some technology features may impact feasibility. Youth can (and should) play an integral role in the early development of these interventions. The findings of this study informed a “Design Jam” prototyping workshop event with youth where they worked in teams to design a potential text message intervention themselves. Results of this consensus study highlight how informational, motivational, or behavioural needs of youth can be translated and incorporated into novel mental health service designs.

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