K. South, C. DeForge, C. Celona, A. Smaldone, Maureen George
Abstract Transition from pediatric to adult care for adolescents and young adults (AYAs) with chronic illness affects the entire family. However, little research has compared AYA and parent experiences of transition. Using Sandelowski and Barroso’s method, the aim of this metasynthesis was to summarize findings of qualitative studies focusing on the transition experiences of AYAs and their parents across different chronic physical illnesses. PubMed, EMBASE and CINAHL were searched followed by forward and backward citation searching. Two authors completed a two-step screening process. Quality was appraised using Guba’s criteria for qualitative rigor. Study characteristics and second order constructs were extracted by two authors and an iterative codebook guided coding and data synthesis. Of 1,644 records identified, 63 studies met inclusion criteria and reflect data from 1,106 AYAs and 397 parents across 18 diagnoses. Three themes were synthesized: transition is dynamic and experienced differently (differing perceptions of role change and growth during emerging adulthood), need for a supported and gradual transition (transition preparation and the factors which influence it) and liminal space (feeling stuck between pediatric and adult care). While AYAs and parents experience some aspects of transition differently, themes were similar across chronic illnesses which supports the development of disease agnostic transition preparation interventions. Transition preparation should support shifting family roles and responsibilities and offer interventions which align with AYA and family preferences.
{"title":"Navigating liminal spaces together: a qualitative metasynthesis of youth and parent experiences of healthcare transition","authors":"K. South, C. DeForge, C. Celona, A. Smaldone, Maureen George","doi":"10.1515/jtm-2022-0004","DOIUrl":"https://doi.org/10.1515/jtm-2022-0004","url":null,"abstract":"Abstract Transition from pediatric to adult care for adolescents and young adults (AYAs) with chronic illness affects the entire family. However, little research has compared AYA and parent experiences of transition. Using Sandelowski and Barroso’s method, the aim of this metasynthesis was to summarize findings of qualitative studies focusing on the transition experiences of AYAs and their parents across different chronic physical illnesses. PubMed, EMBASE and CINAHL were searched followed by forward and backward citation searching. Two authors completed a two-step screening process. Quality was appraised using Guba’s criteria for qualitative rigor. Study characteristics and second order constructs were extracted by two authors and an iterative codebook guided coding and data synthesis. Of 1,644 records identified, 63 studies met inclusion criteria and reflect data from 1,106 AYAs and 397 parents across 18 diagnoses. Three themes were synthesized: transition is dynamic and experienced differently (differing perceptions of role change and growth during emerging adulthood), need for a supported and gradual transition (transition preparation and the factors which influence it) and liminal space (feeling stuck between pediatric and adult care). While AYAs and parents experience some aspects of transition differently, themes were similar across chronic illnesses which supports the development of disease agnostic transition preparation interventions. Transition preparation should support shifting family roles and responsibilities and offer interventions which align with AYA and family preferences.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":"5 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47021886","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-07-12eCollection Date: 2022-01-01DOI: 10.1515/jtm-2022-0002
Katherine South, Maureen George, Arlene Smaldone
Objectives: Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured.
Methods: PubMed was searched to identify observational and experimental studies that measured transition readiness across chronic illnesses. Selected instruments were first evaluated on their development and psychometric properties. Next, reviewers independently mapped each instrument item to Expanded SMART constructs: knowledge, skills/self-efficacy, relationships/communication, psychosocial/emotions, developmental maturity, beliefs/expectations, goals/motivation. If items did not map to a construct, a new construct was named inductively through group discussion.
Results: Three instruments (TRAQ [20 items], STARx [18 items] and TRxANSITION Index [32 items]), reported in 74 studies, were identified. Across instruments, most items mapped to three constructs: skills/self-efficacy, developmental maturity, and knowledge. The psychosocial constructs of goals/motivation and psychosocial/emotions were underrepresented in the instruments. No instrument mapped to every model construct. Two new constructs: independent living and organization were identified.
Conclusions: Constructs representing transition readiness in three frequently used transition readiness instruments vary considerably from Expanded SMART, a holistic conceptual model of transition readiness, suggesting that conceptualization and operationalization of transition readiness is not standardized. No instrument reflected all conceptual constructs of transition readiness and psychosocial constructs were underrepresented, suggesting that current instruments may provide an incomplete measurement of transition readiness.
{"title":"Gaps in transition readiness measurement: a comparison of instruments to a conceptual model.","authors":"Katherine South, Maureen George, Arlene Smaldone","doi":"10.1515/jtm-2022-0002","DOIUrl":"https://doi.org/10.1515/jtm-2022-0002","url":null,"abstract":"<p><strong>Objectives: </strong>Measuring transition readiness is important when preparing young people with chronic illness for successful transition to adult care. The Expanded Socioecological Model of Adolescent and Young Adult Readiness to Transition (Expanded SMART) offers a holistic view of factors that influence transition readiness and outcomes. The aim of this study was to examine conceptual congruency of transition readiness instruments with the Expanded SMART to determine the breadth and frequency of constructs measured.</p><p><strong>Methods: </strong>PubMed was searched to identify observational and experimental studies that measured transition readiness across chronic illnesses. Selected instruments were first evaluated on their development and psychometric properties. Next, reviewers independently mapped each instrument item to Expanded SMART constructs: knowledge, skills/self-efficacy, relationships/communication, psychosocial/emotions, developmental maturity, beliefs/expectations, goals/motivation. If items did not map to a construct, a new construct was named inductively through group discussion.</p><p><strong>Results: </strong>Three instruments (TRAQ [20 items], STARx [18 items] and TRxANSITION Index [32 items]), reported in 74 studies, were identified. Across instruments, most items mapped to three constructs: skills/self-efficacy, developmental maturity, and knowledge. The psychosocial constructs of goals/motivation and psychosocial/emotions were underrepresented in the instruments. No instrument mapped to every model construct. Two new constructs: <i>independent living</i> and <i>organization</i> were identified.</p><p><strong>Conclusions: </strong>Constructs representing transition readiness in three frequently used transition readiness instruments vary considerably from Expanded SMART, a holistic conceptual model of transition readiness, suggesting that conceptualization and operationalization of transition readiness is not standardized. No instrument reflected all conceptual constructs of transition readiness and psychosocial constructs were underrepresented, suggesting that current instruments may provide an incomplete measurement of transition readiness.</p>","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":"4 1","pages":"20220002"},"PeriodicalIF":0.0,"publicationDate":"2022-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9335701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40622170","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
F. Soscia, L. L. Sicignano, E. Verrecchia, Francesca Ardenti Morini, M. G. Massaro, F. Civitelli, F. Ferrari, D. Rigante, E. Cortis, R. Manna
Abstract Objectives Auto-inflammatory Diseases (AIDs) are a group of diseases with a strong genetic component, inducing an inappropriate activation of innate immunity. The patients with pediatric onset will face the transitional care (TC) from a pediatrician to an adult care setting, during the critical phase of the adolescence. That implies a risk of failure and drop out, due to the different approach of pediatrician compared to the adult doctor. To describe the model of TC for AIDs from a paediatric to adult centre of two hospitals in Rome, and to pointing out the different steps emerged from specific experiences. Methods In November 2020, a Board of paediatricians and internists discussed their experience to identify “hot topics” for a successful management of TC. Results The Board agreed on the optimal time for the transition (12–18 years). Specific elements to be considered are the reached level of emotional and intellectual maturity, and the clinical stability of the disease. Conclusions The TC of patients with chronic AIDs, requires a strong cooperation to define the adequate follow-up, and to guarantee the compliance to the treatment. This model allows us to investigate AIDs complex cases, requiring a long period of observations.
{"title":"Transitional care management in patients with auto-inflammatory diseases: experience of cooperation of a paediatric and adult centre","authors":"F. Soscia, L. L. Sicignano, E. Verrecchia, Francesca Ardenti Morini, M. G. Massaro, F. Civitelli, F. Ferrari, D. Rigante, E. Cortis, R. Manna","doi":"10.1515/jtm-2021-0007","DOIUrl":"https://doi.org/10.1515/jtm-2021-0007","url":null,"abstract":"Abstract Objectives Auto-inflammatory Diseases (AIDs) are a group of diseases with a strong genetic component, inducing an inappropriate activation of innate immunity. The patients with pediatric onset will face the transitional care (TC) from a pediatrician to an adult care setting, during the critical phase of the adolescence. That implies a risk of failure and drop out, due to the different approach of pediatrician compared to the adult doctor. To describe the model of TC for AIDs from a paediatric to adult centre of two hospitals in Rome, and to pointing out the different steps emerged from specific experiences. Methods In November 2020, a Board of paediatricians and internists discussed their experience to identify “hot topics” for a successful management of TC. Results The Board agreed on the optimal time for the transition (12–18 years). Specific elements to be considered are the reached level of emotional and intellectual maturity, and the clinical stability of the disease. Conclusions The TC of patients with chronic AIDs, requires a strong cooperation to define the adequate follow-up, and to guarantee the compliance to the treatment. This model allows us to investigate AIDs complex cases, requiring a long period of observations.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45238162","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christine E. Cassidy, J. Kontak, Jacklynn Pidduck, A. Higgins, Scott Anderson, Shauna Best, Amy Grant, Elizabeth Jeffers, Sarah MacDonald, Lindsay MacKinnon, Amy Mireault, Liam Rowe, Rose Walls, J. Curran
Abstract Objectives Transition of care can be a complex process that involves multiple providers working together across the pediatric and adult health care system to support youth. The shift from a primarily family-centred approach to a patient-centred approach that emphasizes more personal responsibility for health care management can be challenging for youth, caregivers and providers to navigate. Despite the importance of transition, there is a lack of evidence about the best practices and types of interventions that support the transition of care process from the perspective of both pediatric and adult health care providers. An exploration of barriers and facilitators is a critical first step to identifying important behavioural determinants for designing and implementing evidence-based interventions. As such, the purpose of this study was to identify the barriers and facilitators to the transition of care from the perspective of pediatric and adult health care providers. Methods A qualitative descriptive design was used to conduct semi-structured interviews guided by the COM-B Model of Behaviour – a theoretical model that suggests that for any behaviour to occur there must be a change in one or more of the following domains: capability, opportunity and/or motivation. The study took place in the province of Nova Scotia, Canada and focused on three common conditions: Inflammatory Bowel Disease, Diabetes, and Juvenile Idiopathic Arthritis. Participants were recruited through stratified purposeful and convenience sampling and all interviews were conducted virtually on Zoom. Interviews were audio-recorded, transcribed verbatim and imported into NVivo Qualitative Data Software for analysis. Data were first analyzed using directed content analysis, guided by the COM-B model, then further examined using inductive thematic analysis to identify barriers and facilitators within the three domains. Results In total, 26 health care providers participated in this study (pediatric, n=13, adult n=13) including a mix of adult and pediatric physicians, nurses, and allied health care professionals. The participants identified primarily as female (n=19.73%) and had a range of years of experience (3–39, mean = 14.84). We identified a range of interconnected barriers and facilitators across each of the COM-B Model of Behaviour domains such as, degree of formalized training (capability), facilitation and coordination responsibilities (opportunity), collaboration across providers (opportunities), securing attachment to adult care system (motivation) and time (opportunity). Findings were categorized by three overarching themes: (1) Knowledge and Skills to Support Transition of Care; (2) Navigation Role for Youth and Caregivers; and (3) System Coordination. Conclusions By using the COM-B Model of Behaviour, we identified key barriers and facilitators that intersect to influence the transition of care process. These findings will be used to inform and adapt initiatives
{"title":"Provider perspectives of barriers and facilitators to the transition from pediatric to adult care: a qualitative descriptive study using the COM-B model of behaviour","authors":"Christine E. Cassidy, J. Kontak, Jacklynn Pidduck, A. Higgins, Scott Anderson, Shauna Best, Amy Grant, Elizabeth Jeffers, Sarah MacDonald, Lindsay MacKinnon, Amy Mireault, Liam Rowe, Rose Walls, J. Curran","doi":"10.1515/jtm-2022-0003","DOIUrl":"https://doi.org/10.1515/jtm-2022-0003","url":null,"abstract":"Abstract Objectives Transition of care can be a complex process that involves multiple providers working together across the pediatric and adult health care system to support youth. The shift from a primarily family-centred approach to a patient-centred approach that emphasizes more personal responsibility for health care management can be challenging for youth, caregivers and providers to navigate. Despite the importance of transition, there is a lack of evidence about the best practices and types of interventions that support the transition of care process from the perspective of both pediatric and adult health care providers. An exploration of barriers and facilitators is a critical first step to identifying important behavioural determinants for designing and implementing evidence-based interventions. As such, the purpose of this study was to identify the barriers and facilitators to the transition of care from the perspective of pediatric and adult health care providers. Methods A qualitative descriptive design was used to conduct semi-structured interviews guided by the COM-B Model of Behaviour – a theoretical model that suggests that for any behaviour to occur there must be a change in one or more of the following domains: capability, opportunity and/or motivation. The study took place in the province of Nova Scotia, Canada and focused on three common conditions: Inflammatory Bowel Disease, Diabetes, and Juvenile Idiopathic Arthritis. Participants were recruited through stratified purposeful and convenience sampling and all interviews were conducted virtually on Zoom. Interviews were audio-recorded, transcribed verbatim and imported into NVivo Qualitative Data Software for analysis. Data were first analyzed using directed content analysis, guided by the COM-B model, then further examined using inductive thematic analysis to identify barriers and facilitators within the three domains. Results In total, 26 health care providers participated in this study (pediatric, n=13, adult n=13) including a mix of adult and pediatric physicians, nurses, and allied health care professionals. The participants identified primarily as female (n=19.73%) and had a range of years of experience (3–39, mean = 14.84). We identified a range of interconnected barriers and facilitators across each of the COM-B Model of Behaviour domains such as, degree of formalized training (capability), facilitation and coordination responsibilities (opportunity), collaboration across providers (opportunities), securing attachment to adult care system (motivation) and time (opportunity). Findings were categorized by three overarching themes: (1) Knowledge and Skills to Support Transition of Care; (2) Navigation Role for Youth and Caregivers; and (3) System Coordination. Conclusions By using the COM-B Model of Behaviour, we identified key barriers and facilitators that intersect to influence the transition of care process. These findings will be used to inform and adapt initiatives","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42607973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brooke Allemang, S. Samuel, Kathleen C. Sitter, S. Patten, Megan Patton, Karina Pintson, Katelyn Greer, Keighley Schofield, M. Farias, Zoya Punjwani, A. Mackie, G. Dimitropoulos
Abstract Background Up to 57% of adolescents and young adults (AYA) with chronic physical health conditions experience mental health conditions, the presence of which contributes to increased morbidity and poor quality of life. AYA with co-occurring physical and mental health conditions, therefore, may experience additional challenges as they transition from pediatric to adult services. While transition readiness – the acquisition of self-management and advocacy skills – contributes to successful transitions to adult care, this concept has not been adequately explored for AYA with co-occurring physical and mental health conditions. Research is needed to identify whether the presence of a mental health comorbidity is associated with transition readiness, and what the experiences of AYA with co-occurring conditions are as they exit pediatric services. This paper outlines the protocol for the Readiness and Experiences of ADolescents and Young Adults with Co-occurring Physical and Mental Health Conditions Exiting Pediatric Services (READY2Exit) study; the first study to address this gap using a patient-oriented, mixed methods design. Methods A sequential explanatory mixed methods design will be used to understand the transition readiness of 16–21 year olds with physical and mental health conditions using quantitative and qualitative data. First, Transition Readiness Assessment Questionnaire (TRAQ) scores will be compared among AYA with chronic health conditions, with and without mental health comorbidity. Interviews will then be conducted with approximately 15 AYA with co-occurring health and mental health conditions and analyzed using qualitative description. The READY2Exit study will be conducted in collaboration with five Young Adult Research Partners (YARP) aged 18–30 with lived experience in the health/mental health systems across Canada. The YARP will partner in key tasks such as interview guide co-design, data interpretation, and knowledge translation tool development. Discussion AYA with co-occurring physical and mental health conditions may have unique needs as they prepare for health care transitions. The results of this study will inform the refinement of transition readiness practices to improve care for this group. The active involvement of the YARP across study phases will bring the critical perspectives of young adults to READY2Exit, ensuring the methods, research approaches and outputs align with their needs.
{"title":"Protocol for READY2Exit: a patient-oriented, mixed methods study examining transition readiness in adolescents with co-occurring physical and mental health conditions","authors":"Brooke Allemang, S. Samuel, Kathleen C. Sitter, S. Patten, Megan Patton, Karina Pintson, Katelyn Greer, Keighley Schofield, M. Farias, Zoya Punjwani, A. Mackie, G. Dimitropoulos","doi":"10.1515/jtm-2022-0001","DOIUrl":"https://doi.org/10.1515/jtm-2022-0001","url":null,"abstract":"Abstract Background Up to 57% of adolescents and young adults (AYA) with chronic physical health conditions experience mental health conditions, the presence of which contributes to increased morbidity and poor quality of life. AYA with co-occurring physical and mental health conditions, therefore, may experience additional challenges as they transition from pediatric to adult services. While transition readiness – the acquisition of self-management and advocacy skills – contributes to successful transitions to adult care, this concept has not been adequately explored for AYA with co-occurring physical and mental health conditions. Research is needed to identify whether the presence of a mental health comorbidity is associated with transition readiness, and what the experiences of AYA with co-occurring conditions are as they exit pediatric services. This paper outlines the protocol for the Readiness and Experiences of ADolescents and Young Adults with Co-occurring Physical and Mental Health Conditions Exiting Pediatric Services (READY2Exit) study; the first study to address this gap using a patient-oriented, mixed methods design. Methods A sequential explanatory mixed methods design will be used to understand the transition readiness of 16–21 year olds with physical and mental health conditions using quantitative and qualitative data. First, Transition Readiness Assessment Questionnaire (TRAQ) scores will be compared among AYA with chronic health conditions, with and without mental health comorbidity. Interviews will then be conducted with approximately 15 AYA with co-occurring health and mental health conditions and analyzed using qualitative description. The READY2Exit study will be conducted in collaboration with five Young Adult Research Partners (YARP) aged 18–30 with lived experience in the health/mental health systems across Canada. The YARP will partner in key tasks such as interview guide co-design, data interpretation, and knowledge translation tool development. Discussion AYA with co-occurring physical and mental health conditions may have unique needs as they prepare for health care transitions. The results of this study will inform the refinement of transition readiness practices to improve care for this group. The active involvement of the YARP across study phases will bring the critical perspectives of young adults to READY2Exit, ensuring the methods, research approaches and outputs align with their needs.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46207650","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
N. Ali, Julie Longson, Rickie Myszka, Kris Park, G. Low, Gary M. Leong, Habib Bhurawala, Anthony Liu
Abstract Objectives Adolescence is a challenging period for diabetes management, particularly when transitioning to adult care. There are reports highlighting concerns that transition to adult care may lead to poor glycemic control and clinic engagement. Our aim was to determine if a co-located pediatric and transition diabetes service would lead to better transition outcomes. Methods A retrospective medical records review was conducted on patients with type 1 diabetes attending a transition clinic in a metropolitan teaching hospital in Sydney, Australia. Patients referred from the hospital’s co-located pediatric diabetes clinic to the transition clinic were compared to those referred from external sources regarding important clinical outcomes such as glycosylated haemoglobin (HbA1c), clinic attendances, and complication rates between referral sources. Confounders such as age, gender, duration of diabetes and socioeconomic status were considered. Results Data was collected from 356 patients of which 121 patients were referred from the co-located pediatric diabetes clinic (IRG) and 235 patients from external sources (ERG). Improvements in HbA1c were only seen in the ERG at 6 and 12 months (p<0.001). Altogether 93% attended one or more medical appointments in the IRG compared to 83% in the ERG (p=0.03). There were more admissions for acute diabetes complications (17 vs. 8%, p=0.01) and more microvascular complications (20 vs. 9%, p<0.01) in the IRG vs. ERG group. Conclusions Although co-location of a pediatric and transition clinic improved medical engagement, this did not equate to better glycemic control or complication rates. Further research is warranted to determine what other strategies are required to optimise the transition process in diabetes care.
{"title":"Comparison of compliance and outcomes in adolescents with type 1 diabetes mellitus attending a co-located pediatric and transition diabetes service","authors":"N. Ali, Julie Longson, Rickie Myszka, Kris Park, G. Low, Gary M. Leong, Habib Bhurawala, Anthony Liu","doi":"10.1515/jtm-2021-0003","DOIUrl":"https://doi.org/10.1515/jtm-2021-0003","url":null,"abstract":"Abstract Objectives Adolescence is a challenging period for diabetes management, particularly when transitioning to adult care. There are reports highlighting concerns that transition to adult care may lead to poor glycemic control and clinic engagement. Our aim was to determine if a co-located pediatric and transition diabetes service would lead to better transition outcomes. Methods A retrospective medical records review was conducted on patients with type 1 diabetes attending a transition clinic in a metropolitan teaching hospital in Sydney, Australia. Patients referred from the hospital’s co-located pediatric diabetes clinic to the transition clinic were compared to those referred from external sources regarding important clinical outcomes such as glycosylated haemoglobin (HbA1c), clinic attendances, and complication rates between referral sources. Confounders such as age, gender, duration of diabetes and socioeconomic status were considered. Results Data was collected from 356 patients of which 121 patients were referred from the co-located pediatric diabetes clinic (IRG) and 235 patients from external sources (ERG). Improvements in HbA1c were only seen in the ERG at 6 and 12 months (p<0.001). Altogether 93% attended one or more medical appointments in the IRG compared to 83% in the ERG (p=0.03). There were more admissions for acute diabetes complications (17 vs. 8%, p=0.01) and more microvascular complications (20 vs. 9%, p<0.01) in the IRG vs. ERG group. Conclusions Although co-location of a pediatric and transition clinic improved medical engagement, this did not equate to better glycemic control or complication rates. Further research is warranted to determine what other strategies are required to optimise the transition process in diabetes care.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48083986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T. Semalulu, J. McColl, Arzoo Alam, Steffy Thomas, Julie Herrington, J. Gorter, T. Cellucci, Stephanie Garner, Liane D. Heale, M. Matsos, K. Beattie, M. Batthish
Abstract Background The transition of patients with a chronic rheumatic disease from pediatric to adult care has been characterized by poor medical and patient-centered outcomes due to the lack of comprehensive transition programs and the paucity of evidence to guide practitioners. We describe a multidisciplinary transition program, data assessing patients’ preparedness for transition and perception of care providers, and the association between these outcomes. Content Patients aged 14–19 with childhood-onset systemic lupus erythematosus (cSLE) or juvenile idiopathic arthritis (JIA) were recruited from Rheumatology Transition Clinics and Young Adult Clinics at a single institution. Participants completed the TRANSITION-Q, which assesses healthcare self-management skills as a proxy for transition readiness, and the Consultation and Relational Empathy Scale (CARE) questionnaire, which measures patients’ perception of their providers’ care and empathy. Summary Among 63 participants, 87% had JIA (mean age 16.5 years). Age was the only patient characteristic positively associated with TRANSITION-Q scores. CARE scores revealed overwhelmingly positive interactions between patients and healthcare team members. TRANSITION-Q and CARE scores were positively correlated. Outlook The transition from pediatric to adult rheumatology care should be recognized as an opportunity to impact the trajectories of patients entering adult care where the patient-provider relationship may play an important role.
{"title":"The transition from pediatric to adult rheumatology care through creating positive and productive patient-provider relationships: an opportunity often forgotten","authors":"T. Semalulu, J. McColl, Arzoo Alam, Steffy Thomas, Julie Herrington, J. Gorter, T. Cellucci, Stephanie Garner, Liane D. Heale, M. Matsos, K. Beattie, M. Batthish","doi":"10.1515/jtm-2021-0001","DOIUrl":"https://doi.org/10.1515/jtm-2021-0001","url":null,"abstract":"Abstract Background The transition of patients with a chronic rheumatic disease from pediatric to adult care has been characterized by poor medical and patient-centered outcomes due to the lack of comprehensive transition programs and the paucity of evidence to guide practitioners. We describe a multidisciplinary transition program, data assessing patients’ preparedness for transition and perception of care providers, and the association between these outcomes. Content Patients aged 14–19 with childhood-onset systemic lupus erythematosus (cSLE) or juvenile idiopathic arthritis (JIA) were recruited from Rheumatology Transition Clinics and Young Adult Clinics at a single institution. Participants completed the TRANSITION-Q, which assesses healthcare self-management skills as a proxy for transition readiness, and the Consultation and Relational Empathy Scale (CARE) questionnaire, which measures patients’ perception of their providers’ care and empathy. Summary Among 63 participants, 87% had JIA (mean age 16.5 years). Age was the only patient characteristic positively associated with TRANSITION-Q scores. CARE scores revealed overwhelmingly positive interactions between patients and healthcare team members. TRANSITION-Q and CARE scores were positively correlated. Outlook The transition from pediatric to adult rheumatology care should be recognized as an opportunity to impact the trajectories of patients entering adult care where the patient-provider relationship may play an important role.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2021-0001","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47616456","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Molly J. Dushnicky, Jessica Scott, D. McCauley, J. Gorter, K. Beattie, M. Batthish
Abstract Objectives While the transition period can be a difficult time for adolescents with chronic health conditions, parents also face challenges in understanding their changing role and how to support their children. To date, minimal interventions have focused on supporting and empowering parents during this period. Methods We co-created a toolkit with and for parents to help prepare them for their child’s transition to adult care. The toolkit was created using an iterative process of reviewing existing resources with integrating feedback from rheumatology patients and parents. Input was sought from the Family and Youth Advisory Councils at McMaster Children’s Hospital in Hamilton, Canada. Results The two components of the toolkit include a Transition Road Map and a Parent Guide to Transition. Five domains of transition readiness were established as pillars of the Road Map. Within each domain, a checklist to achieve self-management was established. The Parent Guide was developed to highlight important information including defining transition, outlining differences between pediatric and adult care, and providing tips on helping and supporting adolescents. Conclusions A Parent Toolkit directed at the Transition from Pediatric to Adult Rheumatology Care was developed and underwent extensive review with multiple stakeholders. Ongoing research on its impact on transition readiness is underway.
{"title":"Transition us together: development of a parent-centered toolkit to support adolescents with rheumatic disease transition to adult care","authors":"Molly J. Dushnicky, Jessica Scott, D. McCauley, J. Gorter, K. Beattie, M. Batthish","doi":"10.1515/jtm-2021-0008","DOIUrl":"https://doi.org/10.1515/jtm-2021-0008","url":null,"abstract":"Abstract Objectives While the transition period can be a difficult time for adolescents with chronic health conditions, parents also face challenges in understanding their changing role and how to support their children. To date, minimal interventions have focused on supporting and empowering parents during this period. Methods We co-created a toolkit with and for parents to help prepare them for their child’s transition to adult care. The toolkit was created using an iterative process of reviewing existing resources with integrating feedback from rheumatology patients and parents. Input was sought from the Family and Youth Advisory Councils at McMaster Children’s Hospital in Hamilton, Canada. Results The two components of the toolkit include a Transition Road Map and a Parent Guide to Transition. Five domains of transition readiness were established as pillars of the Road Map. Within each domain, a checklist to achieve self-management was established. The Parent Guide was developed to highlight important information including defining transition, outlining differences between pediatric and adult care, and providing tips on helping and supporting adolescents. Conclusions A Parent Toolkit directed at the Transition from Pediatric to Adult Rheumatology Care was developed and underwent extensive review with multiple stakeholders. Ongoing research on its impact on transition readiness is underway.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44499208","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Paula Collette, Luisa C. Klein, Lisa M. Körner, G. Ernst, S. Brengmann, J. Schäuble, S. Habbig, L. Weber
Abstract Since the transition from pediatric and adolescent to adult care often proceeds unaccompanied and unplanned, young patients with chronic kidney disease may experience health risks and non-adherence after the transfer. The psychosocial team at the Department of Pediatric Nephrology at the University Hospital of Cologne has therefore developed its local transition program “TraiN” for patients with chronic kidney disease aged 13 years and older. It combines structure and flexibility through predefined content modules that can be individually adapted to the patients, offering continuity and sustainability through a transition contact person. In addition, the family members are offered regular psychological consultations. The timing of the transfer is chosen individually depending on the level of psychosocial and medical transition readiness. The aim of “TraiN” is to strengthen the patients’ transition competence and the responsibility for their disease management and to provide them and their families the best possible support during the transition in order to prevent possible health risks. In the near future, a scientific evaluation will be conducted aiming to determine whether “TraiN” can support young people in their independence and self-reliant disease management.
{"title":"The individualized, accompanied transition program “TraiN” for adolescent kidney patients – a local initiative","authors":"Paula Collette, Luisa C. Klein, Lisa M. Körner, G. Ernst, S. Brengmann, J. Schäuble, S. Habbig, L. Weber","doi":"10.1515/jtm-2021-0002","DOIUrl":"https://doi.org/10.1515/jtm-2021-0002","url":null,"abstract":"Abstract Since the transition from pediatric and adolescent to adult care often proceeds unaccompanied and unplanned, young patients with chronic kidney disease may experience health risks and non-adherence after the transfer. The psychosocial team at the Department of Pediatric Nephrology at the University Hospital of Cologne has therefore developed its local transition program “TraiN” for patients with chronic kidney disease aged 13 years and older. It combines structure and flexibility through predefined content modules that can be individually adapted to the patients, offering continuity and sustainability through a transition contact person. In addition, the family members are offered regular psychological consultations. The timing of the transfer is chosen individually depending on the level of psychosocial and medical transition readiness. The aim of “TraiN” is to strengthen the patients’ transition competence and the responsibility for their disease management and to provide them and their families the best possible support during the transition in order to prevent possible health risks. In the near future, a scientific evaluation will be conducted aiming to determine whether “TraiN” can support young people in their independence and self-reliant disease management.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":"3 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1515/jtm-2021-0002","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42800958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lin Li, Nancy Carter, J. Ploeg, J. Gorter, P. Strachan
Abstract Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.
{"title":"The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol","authors":"Lin Li, Nancy Carter, J. Ploeg, J. Gorter, P. Strachan","doi":"10.1515/jtm-2021-0005","DOIUrl":"https://doi.org/10.1515/jtm-2021-0005","url":null,"abstract":"Abstract Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.","PeriodicalId":93792,"journal":{"name":"Journal of transition medicine","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45093864","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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