المؤلفون: Chang, Joyce C, Knight, Andrea M, Lawson, Erica F

المصدر: The Journal of Rheumatology. 48(1)

مصطلحات موضوعية: Paediatrics, Biomedical and Clinical Sciences, Patient Safety, Autoimmune Disease, Pediatric, Clinical Research, Health Services, Lupus, Good Health and Well Being, Adolescent, Adult, Ambulatory Care, Child, Humans, Lupus Erythematosus, Systemic, Medication Adherence, Rheumatology, Transition to Adult Care, Young Adult, pediatric systemic lupus erythematosus, longitudinal studies, outcome assessment, patient compliance, epidemiology, Clinical Sciences, Immunology, Public Health and Health Services, Arthritis & Rheumatology, Clinical sciences

الوصف: ObjectiveYouth with systemic lupus erythematosus (SLE) transferring from pediatric to adult care are at risk for poor outcomes. We describe patterns of rheumatology/nephrology care and changes in healthcare use and medication adherence during transfer.MethodsWe identified youth ages 15-25 with SLE using US private insurance claims from Optum's deidentified Clinformatics Data Mart. Rheumatology/nephrology visit patterns were categorized as (1) unilateral transfers to adult care within 12 months, (2) overlapping pediatric and adult visits, (3) lost to followup, or (4) continuing pediatric care. We used negative binomial regression and paired t tests to estimate changes in healthcare use and medication possession ratios (MPR) after the last pediatric (index) visit. We compared MPR between youth who transferred and age-matched peers continuing pediatric care.ResultsOf the 184 youth transferred out of pediatric care, 41.8% transferred unilaterally, 31.5% had overlapping visits over a median of 12 months before final transfer, and 26.6% were lost to followup. We matched 107 youth continuing pediatric care. Overall, ambulatory care use decreased among those lost to followup. Acute care use decreased across all groups. MPR after the index date were lower in youth lost to followup (mean 0.24) compared to peers in pediatric care (mean 0.57, p < 0.001).ConclusionYouth with SLE with continuous private insurance coverage do not use more acute care after transfer to adult care. However, a substantial proportion fail to see adult subspecialists within 12 months and have worse medication adherence, placing them at higher risk for adverse outcomes.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/4zd8s8jnTest

المؤلفون: Kelsey Chomistek, Claire E.H. Barber, Amanda Steiman, Cheryl Barnabe, Glen Hazlewood, Elizabeth Stringer, Nadia Luca

المصدر: The Journal of Rheumatology. 48:426-433

مصطلحات موضوعية: Adult, Canada, Transition to Adult Care, Quality management, Adolescent, media_common.quotation_subject, Immunology, MEDLINE, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Nursing, Health care, Humans, Immunology and Allergy, Medicine, 030212 general & internal medicine, Child, Quality of Health Care, media_common, 030203 arthritis & rheumatology, Shared care, business.industry, Transitional Care, Focus Groups, Focus group, Service (economics), Needs assessment, business, Patient education

الوصف: Objective.To conduct a needs assessment and environmental scan to support optimal transition from pediatric to adult rheumatology care in Canada.Methods.This initiative involved 3 phases: (1) a survey-based needs assessment of adult and pediatric rheumatologist members of the Canadian Rheumatology Association to identify perceived infrastructure, educational needs, and national resources to support transition care; (2) an environmental scan, through semistructured interviews, of existing rheumatology transition service care models and challenges in care delivery; and (3) a focus group to prioritize national activities.Results.The needs assessment survey was completed by 65 members, with 66% agreeing that a national approach to transition care was needed. Semistructured interviews reflecting activities at 9 transition care sites were conducted, and they identified candidate models of care, including direct transfer, progressive transfer, and shared care models. Challenges and needs experienced in these care models reflected resource and infrastructure needs, poor availability of mechanisms to support parents and youth through the transition process, and the need for evaluation to support quality improvement. The focus group and prioritization activity was attended by 26 participants, with each having the ability to cast 3 votes. “Supporting patient education for transition to adult rheumatology health care system” (n = 17 votes) and “advocacy activities to access allied health support, including funding” (n = 10 votes) emerged as the top priorities for national initiatives.Conclusion.We have identified priorities in education and advocacy for advancing transition care in Canada that require participation of pediatric and adult rheumatology providers, patients, and arthritis stakeholders in the interest of advancing transition care outcomes.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f204681dde32d7527aa9538d11800314Test
https://doi.org/10.3899/jrheum.200790Test

المؤلفون: Nicole Bitencourt, Erica Lawson, John Bridges, Kristine Carandang, Ela Chintagunta, Peter Chiraseveenuprapund, Kimberly DeQuattro, Y. Ingrid Goh, Tzielan C. Lee, Katharine F. Moore, Rosemary G. Peterson, Jordan E. Roberts, Tova Ronis, Rebecca E. Sadun, Emily A. Smitherman, Elizabeth Stringer, Patience H. White, Joyce C. Chang

المصدر: The Journal of Rheumatology. :jrheum.220262

مصطلحات موضوعية: Young Adult, Transition to Adult Care, Caregivers, Rheumatology, Rheumatic Diseases, Surveys and Questionnaires, Immunology, Humans, Immunology and Allergy, Child

الوصف: The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum effect. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps. The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers. The transitional care needs of patients, healthcare teams, and caregivers is well described in the literature. While various transition readiness scales exist, no longitudinal posttransfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied. Research questions that ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n = 107), young adults/caregivers (n = 23) prioritized research surrounding improved work, school, or social function. The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8b9d27a229db313c219dbb8740cc8c13Test
https://doi.org/10.3899/jrheum.220262Test

المؤلفون: Nora G. Singer, Jennifer Stinson, Y. Ingrid Goh, Aimee O. Hersh, Cuoghi Edens, Kiana R. Johnson, Erica F. Lawson, Joyce Hui-Yuen, Patience H. White, Lynn R. Spiegel, Peter Chira, Rebecca E Sadun

المصدر: The Journal of rheumatology. 48(9)

مصطلحات موضوعية: Adult, Patient Transfer, medicine.medical_specialty, Transition to Adult Care, Childhood arthritis, Immunology, MEDLINE, Primary care, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Rheumatology, Internal medicine, Health care, medicine, Immunology and Allergy, Humans, 030212 general & internal medicine, Pediatric rheumatology, Child, 030203 arthritis & rheumatology, business.industry, digestive, oral, and skin physiology, medicine.disease, United States, Family medicine, Scale (social sciences), North America, Rheumatologists, business, Patient education

الوصف: ObjectiveSince 2010, the rheumatology community has developed guidelines and tools to improve healthcare transition. In this study, we aimed to compare current transition practices and beliefs among Childhood Arthritis and Rheumatology Research Alliance (CARRA) rheumatology providers with transition practices from a provider survey published in 2010.MethodsIn 2018, CARRA members completed a 25-item online survey about healthcare transition. Got Transition’s Current Assessment of Health Care Transition Activities was used to measure clinical transition processes on a scale of 1 (basic) to 4 (comprehensive). Bivariate analyses were used to compare 2010 and 2018 survey findings.ResultsOver half of CARRA members completed the survey (202/396), including pediatric rheumatologists, adult- and pediatric-trained rheumatologists, pediatric rheumatology fellows, and advanced practice providers. The most common target age to begin transition planning was 15–17 years (49%). Most providers transferred patients prior to age 21 years (75%). Few providers used the American College of Rheumatology transition tools (31%) or have a dedicated transition clinic (23%). Only 17% had a transition policy in place, and 63% did not consistently address healthcare transition with patients. When compared to the 2010 survey, improvement was noted in 3 of 12 transition barriers: availability of adult primary care providers, availability of adult rheumatologists, and pediatric staff transition knowledge and skills (P < 0.001 for each). Nevertheless, the mean current assessment score was < 2 for each measurement.ConclusionThis study demonstrates improvement in certain transition barriers and practices since 2010, although implementation of structured transition processes remains inconsistent.

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::899595ef469e423a598d137f844bb110Test
https://pubmed.ncbi.nlm.nih.gov/33526621Test

المؤلفون: Andrea M. Knight, Erica F. Lawson, Joyce C. Chang

المصدر: J Rheumatol
The Journal of rheumatology, vol 48, iss 1

مصطلحات موضوعية: Nephrology, Adult, medicine.medical_specialty, Transition to Adult Care, Adolescent, Clinical Sciences, Immunology, Lupus, Medication adherence, Adult care, patient compliance, Autoimmune Disease, Article, Medication Adherence, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Rheumatology, Clinical Research, 030225 pediatrics, Acute care, Internal medicine, Epidemiology, Health care, medicine, Ambulatory Care, longitudinal studies, Immunology and Allergy, Humans, Lupus Erythematosus, Systemic, pediatric systemic lupus erythematosus, Child, outcome assessment, Pediatric, 030203 arthritis & rheumatology, Lupus Erythematosus, business.industry, Systemic, Health Services, Arthritis & Rheumatology, Good Health and Well Being, Family medicine, Ambulatory, Public Health and Health Services, epidemiology, Patient Safety, business

الوصف: Objective.Youth with systemic lupus erythematosus (SLE) transferring from pediatric to adult care are at risk for poor outcomes. We describe patterns of rheumatology/nephrology care and changes in healthcare use and medication adherence during transfer.Methods.We identified youth ages 15–25 with SLE using US private insurance claims from Optum’s deidentified Clinformatics Data Mart. Rheumatology/nephrology visit patterns were categorized as (1) unilateral transfers to adult care within 12 months, (2) overlapping pediatric and adult visits, (3) lost to followup, or (4) continuing pediatric care. We used negative binomial regression and paired t tests to estimate changes in healthcare use and medication possession ratios (MPR) after the last pediatric (index) visit. We compared MPR between youth who transferred and age-matched peers continuing pediatric care.Results.Of the 184 youth transferred out of pediatric care, 41.8% transferred unilaterally, 31.5% had overlapping visits over a median of 12 months before final transfer, and 26.6% were lost to followup. We matched 107 youth continuing pediatric care. Overall, ambulatory care use decreased among those lost to followup. Acute care use decreased across all groups. MPR after the index date were lower in youth lost to followup (mean 0.24) compared to peers in pediatric care (mean 0.57, p < 0.001).Conclusion.Youth with SLE with continuous private insurance coverage do not use more acute care after transfer to adult care. However, a substantial proportion fail to see adult subspecialists within 12 months and have worse medication adherence, placing them at higher risk for adverse outcomes.

وصف الملف: application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::dff6eab4c33d5c68bbf1a4afa195bf72Test
https://pubmed.ncbi.nlm.nih.gov/33386347Test

المؤلفون: Janet E. McDonagh, Neil Chanchlani, Marie McGee

المصدر: The Journal of Rheumatology. 42:901-902

مصطلحات موضوعية: Male, Gerontology, Transition to Adult Care, Medical education, business.industry, Transition (fiction), digestive, oral, and skin physiology, Immunology, Adult care, Resource center, Rheumatology, Rheumatic Diseases, Surveys and Questionnaires, Health care, Humans, Immunology and Allergy, Medicine, Female, Transitional care, Element (criminal law), business, Quality of Health Care

الوصف: To the Editor: Recent reports have suggested that in spite of rheumatology-specific research in the area, there remained a need for further research and development of transitional care for adolescents reaching adulthood, as highlighted in an editorial and paper in this journal1,2. In the United States, “Six Core Elements of Health Care Transition” have been defined by the federally funded national resource center on transition (Got Transition)3. McManus, et al recently reported a study that observed improvements in all 6 transition quality indicators when these elements were addressed in the clinical setting4. Informational continuity is 1 of several continuities recognized as important in transitional care5 and is reflected in several of the core elements referred to above3,4. Although a medical summary3 as described in core element No. 4 was ranked in the top 2 aspects of successful transition by adult physicians6, … Address correspondence to Dr. N. Chanchlani, Department of Rheumatology, Birmingham Children’s Hospital, Birmingham B4 6NH, UK. E-mail: nchanchlani{at}doctors.org.uk

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::179f076e93a4f46cf41abe7ca08a059aTest
https://doi.org/10.3899/jrheum.141364Test

المؤلفون: Aimee O. Hersh

المصدر: The Journal of Rheumatology. 42:902-902

مصطلحات موضوعية: Male, Receipt, Gerontology, Transition to Adult Care, medicine.medical_specialty, business.industry, Extramural, Immunology, MEDLINE, Direct communication, Salt lake, Documentation, Rheumatology, Rheumatic Diseases, Surveys and Questionnaires, Family medicine, Cohort, Humans, Immunology and Allergy, Medicine, Female, business, Quality of Health Care

الوصف: To the Editor: In their letter, Dr. Chanchlani, et al 1 briefly described the outcomes of their established program for transition from pediatric to adult rheumatology care in the United Kingdom2,3. Their results demonstrated that even with a coordinated program, nearly one-quarter of the cohort did not meet their definition of a successful transfer (receipt of a letter from the first adult appointment), or was lost to followup. Further, the authors found that documentation of direct communication with adult providers was lacking in 24% of cases, and patients were not provided with a medical summary in nearly 60% of cases. As the authors discussed, written communication with adult providers and creation of a medical summary for patients … Address correspondence to Dr. A.O. Hersh, 81 N. Mario Capecchi Drive, 4th Floor, Salt Lake City, Utah 84113, USA. E-mail: aimee.hersh{at}hsc.utah.edu

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::10e2a3e459f76e24a03f3ead87649d8aTest
https://doi.org/10.3899/jrheum.150043Test