scholarly journals A novel transition clinic structure for adolescent and young adult patients with childhood onset rheumatic disease improves transition outcomes

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Rebecca S. Overbury ◽  
Kelly Huynh ◽  
John Bohnsack ◽  
Tracy Frech ◽  
Aimee Hersh
Keyword(s):  
Health Care ◽  
Clinic Visit ◽  
Adolescent And Young Adult ◽  
Adult Health ◽  
Readiness Assessment ◽  
Transition Readiness ◽  
Transition Outcomes ◽  
Transition Clinic ◽  
Poor Outcomes ◽  
Transition Policy

Background The transition of health care from Pediatric to Adult providers for adolescents and young adults with chronic disease is associated with poor outcomes. Despite the importance of this transition, over 80% of these patients do not receive the services necessary to transition to Adult health care. In 2018, we initiated a transition clinic structure, integrating an Internal Medicine - Pediatrics trained Adult Rheumatologist in a Pediatric Rheumatology clinic to guide this transition. Our goal was to improve transition outcomes. We report the methods of this clinic and its preliminary outcomes. Methods For patients referred to the transition clinic, the Adult Rheumatologist assumed medical management and implemented a six-part modular transition curriculum. This curriculum included a Transition Policy, Transition Readiness Assessment, medication review and education, diagnosis review and education, and counseling on differences between Pediatric and Adult-oriented care. Eligible patients and their families were enrolled in a prospective observational outcomes research registry. Initial data from this transition clinic is reported including adherence with certain aspects of the transition curriculum and clinic utilization. Results The transition clinic Adult Rheumatologist saw 177 patients in 2 years, and 57 patients were eligible for, approached, and successfully enrolled in the registry. From this registry, all patients reviewed the Transition Policy with the Adult Rheumatologist and 45 (78.9%) completed at least one Transition Readiness Assessment. Of the 22 patients for whom transition was indicated, all were successfully transitioned to an Adult Rheumatologist. 17 (77.3%) continued care post-transition with the transition clinic Adult Rheumatologist, and 5 (22.7%) continued care post-transition with a different Adult Rheumatologist. The median time between the last transition clinic visit and first Adult clinic visit was 5.1 months. Conclusions Our experience demonstrated the success of our clinic model regarding participation in the transition curriculum and improved clinic utilization data. Our results are an improvement over transition rates reported elsewhere that did not implement our model. We believe that this structure could be applied to other primary care and subspecialty clinics. Trial registration This research was approved by the University of Utah Institutional Review Board (IRB) in January 2019 (IRB_00115964). Patients were retrospectively registered if involved prior to this date.

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness

2014 ◽  
Vol 26 (2) ◽  
pp. 159-174 ◽  
Author(s):  
Jennifer Stinson ◽  
Sara Ahola Kohut ◽  
Lynn Spiegel ◽  
Meghan White ◽  
Navreet Gill ◽  
...  
Keyword(s):  
Health Care ◽  
Transitional Care ◽  
Chronic Illnesses ◽  
Future Research ◽  
Adult Health ◽  
Transition Readiness ◽  
Cosmin Checklist ◽  
Validated Questionnaire ◽  
Satisfaction Measures ◽  
Adult Health Care

Abstract Background: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes. Objectives: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures. Methods: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality. Results: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist. Conclusion: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.

Assessing perceptions of transition readiness in the adolescent and young adult oncology population.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 73-73
Author(s):  
Vaibhav Agrawal ◽  
Kristina K. Blessing ◽  
Andrea Berger ◽  
Amanda Schleicher ◽  
Mike Styer ◽  
...  
Keyword(s):  
Young Adult ◽  
Medical Center ◽  
Lymphoblastic Leukemia ◽  
Adolescent And Young Adult ◽  
Readiness Assessment ◽  
Patient Age ◽  
Transition Readiness ◽  
Healthcare Transition ◽  
Patient Âgé ◽  
Young Adult Oncology

73 Background: Childhood cancer patients have distinct health-related needs as they transition from patient to survivor and from pediatric to adult-based care. This study used the Transition Readiness Assessment Questionnaire (TRAQ) to assess transition readiness and compare variation in readiness perceptions between patients, parents, and physicians. Methods: The TRAQ was completed by patients between ages 12 to 26 and their parent and oncologist at Geisinger Medical Center from Sept. 2015 to Dec. 2016. Surveys were scored according to validated methods (min. 1, max. 5). Statistical analysis was completed using SAS 9.4. Results: The study enrolled 49 patients, including 6 patients (12.2%) and 43 survivors (87.8%). There were 29 males (59.2%). The patient’s mean age at the time of survey was 18.4 years. Cancer types included: acute lymphoblastic leukemia (n = 17), lymphoma (n = 12), and sarcoma (n = 7). There were no significant differences in overall TRAQ scores between parents, patients, and physicians (mean 3.2, 3.5, and 3.7, respectively). The highest interobserver agreement was seen between patients and parents; the lowest was seen between physicians and patients. The greatest competency was assessed in the activity of talking with providers, and the lowest was measured in appointment keeping. In the domain of tracking health issues, providers assigned higher scores than patients (p = 0.003) and parents (p = 0.001). In the skill of talking with providers, patients ranked themselves higher than providers (p = 0.003). There was no significant variation in scores based on disease type, length of therapy, or insurance type. Patient age at diagnosis, patient age at therapy completion, and patient age at survey were correlated with higher patient (p = 0.004, p = 0.002, p = 0.0001, respectively), parent (p = 0.017, p = 0.019, p = 0.0001, respectively), and physician (p = 0.027, p = 0.03, p = 0.0001, respectively) scores. Conclusions: This study demonstrated that the overall assessment of transition readiness in the adolescent and young adult oncology population was similar between patients, parents, and physicians. The TRAQ is a tool that can be effectively used to guide healthcare transition in this population.

scholarly journals Be on TRAQ – Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot testing of the German Version (TRAQ-GV-15)

2019 ◽  
Vol 1 (1) ◽  
Author(s):  
Caroline Culen ◽  
Marion Herle ◽  
Marianne König ◽  
Sophie-Helene Hemberger ◽  
Sanja Seferagic ◽  
...  
Keyword(s):  
Health Care ◽  
Cultural Adaptation ◽  
Cross Cultural ◽  
Assessment Instrument ◽  
Pediatric Care ◽  
German Version ◽  
Readiness Assessment ◽  
Cross Cultural Adaptation ◽  
Transition Readiness ◽  
Assessment Questionnaire

AbstractObjectiveTransfer from pediatric care into the adult health care system is known to be a vulnerable phase in the lives of youth with special health care needs (YSHCN). Recommendations from the literature favor assessment of transition readiness rather than simply pass over YSHCN from pediatric to adult-centered care by the age of 18. Nevertheless, no validated and disease neutral assessment instrument in German exists to date. Hence, our aim was to cross-culturally adapt and to pilot-test a German version of the Transition Readiness Assessment Questionnaire (TRAQ 5.0). We wanted to provide a tool that can be applied broadly during the health care transition (HCT) process of YSHCN.MethodsThe development included translating and adapting TRAQ 5.0 to German and conducting a pilot-study with 172 YSHCN between the ages of 14 and 23.ResultsCross-cultural adaptation resulted in the TRAQ-GV-15. Exploratory factor analysis led to a 3 factor-structure. Internal consistency for the overall score was good with a Cronbach’s alpha of 0.82. Age, in contrast to sex, had a significant effect on the TRAQ scoring. The administration of the TRAQ-GV-15 was well received and demonstrated good feasibility.ConclusionThe TRAQ-GV-15 is an easily applicable and clinically usable instrument for assessing transition readiness in German speaking YSHCN prior to HCT.

scholarly journals “Friending” Teens: Systematic Review of Social Media in Adolescent and Young Adult Health Care

2015 ◽  
Vol 17 (1) ◽  
pp. e4 ◽  
Author(s):  
Lael M Yonker ◽  
Shiyi Zan ◽  
Christina V Scirica ◽  
Kamal Jethwani ◽  
T Bernard Kinane
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Social Media ◽  
Young Adult ◽  
Adolescent And Young Adult ◽  
Adult Health ◽  
Young Adult Health ◽  
Adult Health Care

scholarly journals The Coming-of-Age Transition Care for Adolescents with Rheumatic Disease—Where Are We and What Have We Done in Asia?

2021 ◽  
Vol 10 (4) ◽  
pp. 821
Author(s):  
Kai Liang Teh ◽  
Sook Fun Hoh ◽  
Thaschawee Arkachaisri
Keyword(s):  
Unmet Needs ◽  
Negative Impact ◽  
Coming Of Age ◽  
Assessment Tools ◽  
Adult Health ◽  
Childhood Onset ◽  
Readiness Assessment ◽  
Transition Readiness ◽  
Transition Care ◽  
Guidelines And Recommendations

The transition from pediatric to adult health care is a challenging yet important process in rheumatology as most childhood-onset rheumatic diseases persist into adulthood. Numerous reports on unmet needs as well as evidence of negative impact from poor transition have led to increased efforts to improve transition care, including international guidelines and recommendations. In line with these recommendations, transition programs along with transition readiness assessment tools have been established. Despite these efforts, there are still a lot of work to be done for transition care in rheumatology. This review article focuses on how transition care in rheumatology has developed in recent years and highlights the gaps in current practices.

Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases

2018 ◽  
Vol 22 (3) ◽  
pp. 470-485 ◽  
Author(s):  
Nan Sheng ◽  
Jiali Ma ◽  
Wenwen Ding ◽  
Ying Zhang
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Young People ◽  
Self Management ◽  
Family Management ◽  
Adult Health ◽  
Children And Young People ◽  
Transition Readiness ◽  
Adult Health Care

Transition from pediatric to adult health care is a key milestone for children and young people (CYP) with chronic conditions. Family management (FM) and self-management are two important concepts during the process. This study aimed to explore the relationships between FM, self-management and transition readiness, and quality of life (QoL), and identify the potential CYP or family factors influencing the relationships. Data about FM, self-management and transition readiness, QoL, and various contextual factors were collected from 268 caregiver–child pairs. Structural equation modeling was used to examine the relationships between all variables. Results revealed that the easy aspects of FM mediated the relationships between the challenging aspects of FM, self-management and transition readiness, and QoL of CYP. Self-management and transition readiness mediated the relationship between the easy aspects of FM and QoL. Contextual factors indirectly influenced CYP’s transition readiness and QoL through different aspects of FM. The results imply that to ensure the smooth transition from pediatric to adult health care and improve the CYP’s QoL, strengthening CYP’s independence and self-management competencies, combined with the support of the easy aspects of FM, seem to be useful strategies to increase CYP’s readiness for transfer.

Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis

2020 ◽  
Author(s):  
Katherine A Traino ◽  
Christina M Sharkey ◽  
Megan N Perez ◽  
Dana M Bakula ◽  
Caroline M Roberts ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care Utilization ◽  
Latent Class Analysis ◽  
Latent Class ◽  
Care Utilization ◽  
Class Membership ◽  
Transition Readiness ◽  
High Utilization

Abstract Objective To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). Methods Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. Results Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. Conclusions The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

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