ABSTRACT
Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A&E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95% CI 0.64-0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95-1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use. CONCLUSION: Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs. WHAT IS KNOWN: ⢠In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes. ⢠Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer. WHAT IS NEW: ⢠Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD. ⢠Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.
Subject(s)
Emergency Service, Hospital , Healthcare Disparities , Renal Insufficiency, Chronic , Transition to Adult Care , Humans , Female , Male , England/epidemiology , Renal Insufficiency, Chronic/therapy , Renal Insufficiency, Chronic/epidemiology , Adolescent , Transition to Adult Care/statistics & numerical data , Retrospective Studies , Young Adult , Emergency Service, Hospital/statistics & numerical data , Healthcare Disparities/statistics & numerical data , Child , Adult , Socioeconomic Factors , Child, PreschoolABSTRACT
BACKGROUND: Young adults (YA) with childhood-onset chronic conditions-particularly YA with cystic fibrosis (CF), congenital heart disease (CHD), and sickle cell disease (SCD)-continue to have pediatric hospital admissions. Factors associated with this continued pediatric hospital use remain underexplored. OBJECTIVE: To determine if pediatric hospital use by YA differed (1) across condition and (2) within each condition by sociodemographic factors. METHODS: Conducted a cross-sectional analysis of admissions for YA 22-35 years with CF, CHD, and SCD from 2016 to 2020 in the National Inpatient Sample. Admissions for YA with CF, CHD, and SCD were identified by international classification of diseases, 10th revision-clinical modification diagnosis codes. To determine if conditions or sociodemographic factors were associated with YA pediatric hospital use, we used multivariable logistic regression with separate models for the different objectives. RESULTS: YA with SCD had lower odds of pediatric hospital use compared to YA with CF. Relationships between sociodemographic factors and pediatric hospital use varied. Black YA with both CF and CHD had lower odds of pediatric hospital use than white YA with CF and CHD. For YA with SCD, despite 17,810 (6.5%) having rural residence, zero (0) had pediatric hospital use; whereas YA with CF living in a rural area had greater odds of pediatric hospital use compared to urban residents. CONCLUSION: YA with SCD used pediatric hospitals less than YA with either CF or CHD. Coupled with our findings that Black YA with CF and CHD had less pediatric hospital use, these data may reflect systematic racial differences within pediatric to adult healthcare transition programs.
Subject(s)
Hospitals, Pediatric , Transition to Adult Care , Humans , Male , Cross-Sectional Studies , Female , Hospitals, Pediatric/statistics & numerical data , Adult , Transition to Adult Care/statistics & numerical data , Chronic Disease , Young Adult , Cystic Fibrosis/therapy , Healthcare Disparities/statistics & numerical data , Anemia, Sickle Cell/therapy , Anemia, Sickle Cell/epidemiology , Heart Defects, Congenital/therapy , United States , Hospitalization/statistics & numerical dataABSTRACT
BACKGROUND: Disease activity in juvenile idiopathic arthritis (JIA) commonly persists into adulthood. Transfer of JIA patients to adult healthcare services can be challenging, with prior studies showing poor rates of success. AIMS: This audit sought to examine characteristics of patients undergoing transfer of care within the rheumatology unit at the Royal Children's Hospital in Melbourne, with the aim of identifying areas for improvement. Specifically, we sought to determine the rate at which confirmation of established care with an adult service (confirmed transfer of care) was documented in the patient chart. METHODS: Patients with a diagnosis of JIA who turned 18 years of age between 2012 and 2019 were identified. A chart review was undertaken to collect relevant data. RESULTS: One hundred and seventy-seven patients were identified. In all, 64% (114/177) were referred for adult care. The commonest JIA subtypes referred were seronegative polyarticular (35/114; 30.7%) and oligoarticular JIA (22/114; 19.3%). Documentation of confirmed transfer of care occurred in 62.3% (71/114), with correspondence received from adult services in 49.1% (56/114). There was no difference in rate of return correspondence from public versus private providers (45% vs 53.8%; P = 0.38). The use of 'backstop appointments' was more likely in those with confirmed transfer of care (66% vs 30%; P = 0.0002). CONCLUSIONS: Lack of confirmed transfer of care for JIA patients is common and carries a risk of suboptimal outcomes. Strategies to improve communication with adult services, the routine use of 'backstop' appointments and vigilance regarding potential loss to follow up at the time of transfer would minimise this risk.
Subject(s)
Arthritis, Juvenile , Tertiary Care Centers , Transition to Adult Care , Adolescent , Humans , Arthritis, Juvenile/diagnosis , Arthritis, Juvenile/therapy , Australia , Hospital Units , Hospitals, Pediatric , Rheumatology , Transition to Adult Care/statistics & numerical dataABSTRACT
Importance: Health literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown. Objective: To determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida. Design, Setting, and Participants: This cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021. Exposures: Health literacy as assessed by the Brief Health Literacy Screening Tool. Main Outcomes and Measures: The primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores. Results: The TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79). Conclusions and Relevance: Patient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.
Subject(s)
Health Literacy/statistics & numerical data , Spinal Dysraphism/psychology , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Child , Cross-Sectional Studies , Female , Humans , Illinois , Male , Self Report , Surveys and Questionnaires , Young AdultABSTRACT
Introduction: The prevalence of neuropathic lesions in young patients with type 1 diabetes mellitus (T1DM) at the time of transition from pediatric care to adult-oriented diabetes care is poorly studied. A comparative study with healthy volunteers to assess the possible neuropathic condition of this special population and to identify the potential early screening needs has not been performed yet. The results may provide important feedback to pediatric diabetes care and a remarkable baseline reference point for further follow up in adult diabetes care. Patients and Methods: Twenty-nine young patients with T1DM [age: 22.4 ± 2.9 years; HbA1c: 8.5 ± 2.1%, diabetes duration: 12.2 ± 5.8 years; (mean ± SD)] and 30 healthy volunteers (age: 21.5 ± 1.6 years; HbA1c: 5.3 ± 0.3%) were involved in the study. Autonomic function was assessed by standard cardiovascular reflex tests. Complex peripheral neuropathic testing was performed by Neurometer®, Neuropad®-test, Tiptherm®, Monofilament®, and Rydel-Seiffer tuning fork tests. Results: T1DM patients had significantly higher diastolic blood pressure than controls (80 ± 9 vs. 74 ± 8 mmHg, p < 0.01), but there was no significant difference in systolic blood pressure (127 ± 26 vs. 121 ± 13 mmHg). Cardiovascular reflex tests had not revealed any significant differences between the T1DM patients and controls. No significant differences with Neurometer®, Neuropad®-test, and Monofilament® were detected between the two groups. The vibrational sensing on the radius on both sides was significantly impaired in the T1DM group compared to the controls with Rydel-Seiffer tuning fork test (right: 7.5 ± 1.0 vs. 7.9 ± 0.3; left: 7.5 ± 0.9 vs. 7.9 ± 0.3, p < 0.05). The Tiptherm®-test also identified a significant impairment in T1DM patients (11 sensing failures vs. 1, p < 0.001). In addition, the neuropathic complaints were significantly more frequently present in the T1DM patient group than in the controls (9 vs. 0, p < 0.01). Conclusion: In this young T1DM population, cardiovascular autonomic neuropathy and cardiac morphological alterations could not be found. However, Rydel-Seiffer tuning fork and Tiptherm®-tests revealed peripheral sensory neurological impairments in young T1DM patients at the time of their transition to adult diabetes care.
Subject(s)
Diabetes Mellitus, Type 1/epidemiology , Diabetic Neuropathies/epidemiology , Transition to Adult Care/statistics & numerical data , Adult , Age Factors , Autonomic Nervous System/physiopathology , Autonomic Nervous System Diseases/epidemiology , Autonomic Nervous System Diseases/etiology , Diabetes Mellitus, Type 1/complications , Diabetes Mellitus, Type 1/therapy , Diabetic Neuropathies/etiology , Diabetic Neuropathies/therapy , Female , Humans , Hungary/epidemiology , Male , Time Factors , Young AdultABSTRACT
BACKGROUND: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective. METHODS: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis. RESULTS: Using a constant comparison approach, data revealed three primary themes regarding parents' perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors' overall well-being, including financial and health insurance literacy. CONCLUSIONS: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.
Subject(s)
Cancer Survivors/psychology , Neoplasms/therapy , Survivorship , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Aftercare/psychology , Aftercare/statistics & numerical data , Female , Health Literacy , Humans , Male , Neoplasms/mortality , Neoplasms/psychology , Parents , Qualitative Research , Surveys and Questionnaires , Young AdultABSTRACT
The cumulative burden of chronic health conditions as childhood cancer survivors transition to adult health care and insurance systems is unknown. We estimated the cumulative burden (N = 4612 survivors, 625 controls) in the St. Jude Lifetime Cohort. At 18 and 26 years old, survivors experienced (per 100 individuals) an average of 22.3 (95% confidence interval [CI]: 17.2-27.4) and 40.3 (95% CI: 34.8-45.8) disabling conditions versus 3.5 (95% CI: 2.0-5.0) and 5.7 (95% CI: 3.7-7.7) in controls, and 128.7 (95% CI: 119.5-137.8) and 240.5 (95% CI: 229.9-251.0) lower severity conditions versus 12.4 (95% CI: 8.9-16.0) and 51.3 (95% CI: 43.1-59.4) in controls. Survivors experience a high cumulative burden at key health care transition ages, underscoring the need to optimize access to care.
Subject(s)
Cancer Survivors/psychology , Chronic Disease/psychology , Neoplasms/psychology , Adolescent , Adult , Aged , Child , Child, Preschool , Humans , Insurance, Health/statistics & numerical data , Middle Aged , Neoplasms/therapy , Transition to Adult Care/statistics & numerical data , Young AdultABSTRACT
BACKGROUND: A Turner Syndrome (TS) Transition clinic, Royal Hospital for Children Glasgow (RHCG), with paediatric and adult endocrinology/gynaecology teams was established in 1998 with an aim of improving health outcomes in TS throughout the lifespan. OBJECTIVE: To evaluate the success of our TS transition service, focussing on evaluating established follow-up after transfer to adult services. METHODS: Girls attending the TS Transition clinic at Royal Hospital for Children Glasgow, 1998-2017, were identified. Attendance data were obtained from patient records and an electronic appointment system. We assessed good and late early attendance in our cohort of TS patients as well as established endocrine follow-up, defined as those still attending adult endocrine services 3 years after transfer. Success of TS transition was determined by the proportion of girls in established endocrine follow-up. RESULTS: Forty-six girls (median age 18.3 yrs) were identified. Thirty-six, 36/46 girls transferred prior to 2015 and 26 of those (72%) were in established follow-up at 3 years, 22/36 girls had met with an Adult specialist prior to transfer and 14/36 had not met with an adult specialist prior to transfer. Twenty-one (80.7%) were good early attenders (p = 0.10). In the early attenders' cohort, there was no significant difference between those that had and had not met an adult specialist prior to transfer. CONCLUSION: A significant proportion of girls with TS are currently lost to endocrine follow-up following transfer to adult clinics. Early attendance at an adult clinic appears to predict established long-term follow-up. Strategies to improve early attendance and long-term endocrine follow-up are needed to ensure lifelong health needs are addressed.
Subject(s)
Transition to Adult Care/statistics & numerical data , Turner Syndrome/epidemiology , Adolescent , Cohort Studies , Databases, Factual , Delivery of Health Care , Endocrinologists , Female , Follow-Up Studies , Humans , Patient Compliance , Scotland/epidemiology , Young AdultABSTRACT
OBJECTIVE: To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents. METHODS: This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14-23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software. RESULTS: Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children's resilience; parents over-estimated their children's IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support. CONCLUSION: Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers.
Subject(s)
Empowerment , Inflammatory Bowel Diseases/psychology , Parents/psychology , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Aged , Child , Cross-Sectional Studies , Focus Groups , Humans , Male , Self Efficacy , Social Support , Surveys and Questionnaires , Young AdultABSTRACT
Purpose: The purpose of this study was to disclose the variability of pathways currently taken in the treatment of adolescent patients from diagnosis to final follow-up with a view to developing a more homogenous system. Patients & methods: A cross-sectional, observational and retrospective study of the cancer diagnosis and assignment to medical care teams in adolescent patients (12-20 years) from January 2008 to December 2018 was conducted. A total of 345 adolescent patients aged between 12 and 20 years, diagnosed with cancer and treated at Hospital Clinico Universitario Virgen de la Arrixaca were included. Results: CNS tumors, followed by leukemia were the most frequent tumors. At the time of diagnosis, the highest incidences of patients were assisted in the pediatrics service adult oncology service (21.7%) and hematology (11%). Conclusion: Our aim is to highlight the need for a better transition for patients from pediatric to adult oncology and hematology services.
Lay abstract This study shows the reality of the care of adolescent cancer patients in a hospital in southern Spain. A cross-sectional, observational and retrospective study of cancer diagnoses and assignment to medical care teams in adolescent patients (1220 years) from January 2008 to December 2018 was conducted. A total of 345 adolescent patients between 12 and 20 years old who had a cancer diagnosis and were treated at Hospital Clinico Universitario Virgen de la Arrixaca were included. CNS tumors, followed by leukemia were the most frequent. At the time of diagnosis, the patients were most commonly attended by the pediatrics service, which concentrates 46.5% of the study population. There is great variability in the treatment and follow-up of the same tumors. The need for a better transition for patients from pediatric to adult oncology and hematology services is demonstrated.
Subject(s)
Critical Pathways/organization & administration , Neoplasms/therapy , Patient Care Team/organization & administration , Quality Improvement , Transition to Adult Care/organization & administration , Adolescent , Aftercare/organization & administration , Aftercare/statistics & numerical data , Child , Critical Pathways/statistics & numerical data , Cross-Sectional Studies , Female , Humans , Incidence , Male , Medical Oncology/organization & administration , Medical Oncology/statistics & numerical data , Neoplasms/diagnosis , Neoplasms/epidemiology , Pediatrics/organization & administration , Pediatrics/statistics & numerical data , Referral and Consultation/organization & administration , Referral and Consultation/statistics & numerical data , Retrospective Studies , Tertiary Care Centers/organization & administration , Tertiary Care Centers/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Young AdultABSTRACT
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.
Subject(s)
Cancer Survivors/psychology , Neoplasms/psychology , Neoplasms/therapy , Transition to Adult Care/statistics & numerical data , Adolescent , Child , Child, Preschool , Combined Modality Therapy , Cross-Sectional Studies , Feasibility Studies , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Male , Neoplasms/pathology , Prognosis , Surveys and Questionnaires , Survival Rate , SwitzerlandABSTRACT
The paediatric-adult split in mental health care necessitates young people to make a transition between services when they reach the upper end of child and adolescent mental health services (CAMHS). However, we know that this transition is often poor, and not all young people who require ongoing support are able to continue care in adult mental health services (AMHS). These young people are said to have fallen through the gap between services. This research aimed to explore the reasons why young people fall through the gap between CAMHS and AMHS, and what effect this has had on them and their families. Narrative interviews were conducted with 15 young people and 15 parents, representing 19 unique transition stories. Themes were identified collaboratively using thematic analysis. Reasons for falling through the gap were grouped into systemic problems and problems with the quality of care received. Effects of falling through the gap were grouped into separate themes for young people (feeling abandoned; struggling to manage without continued care; problems with medication) and parents (emotional impact of care ending; parents taking an active role in the young person's care). To our knowledge, this is the first qualitative study that has focused only on the experiences of young people who have fallen through the gap between services. This research adds novel findings to existing literature regarding barriers to transition and the effects of discontinuity of care.
Subject(s)
Adolescent Health Services/statistics & numerical data , Mental Health Services/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Adolescent , Female , Humans , Male , Qualitative Research , Referral and ConsultationABSTRACT
OBJECTIVE: The transfer from pediatric to adult care for young adults is a vulnerable period. Our objectives were to quantify the time between the final pediatric and the first adult visit and to evaluate unscheduled utilization in care and progression to end-stage renal disease (ESRD) or death. METHODS: We conducted a retrospective analysis of pediatric patients transferring to a large adult rheumatology clinic. Outcomes included time to first completed adult visit, unscheduled health care utilization (hospitalizations and emergency department [ED] visits), and progression to ESRD or death. Multivariable regression models assessed variables predictive of outcomes of interest. RESULTS: A total of 141 pediatric patients who transferred care were identified: 77% female, 65% Hispanic, and 60% with connective tissue diseases (CTDs). The mean time between final pediatric and first completed adult rheumatology visit was 221 days (range 0-1,207 days). In regression modeling, we found that continued insurance coverage, younger age at referral, and referral from a pediatric rheumatologist were predictive of shorter time to completed adult visit (P < 0.005). Factors associated with hospitalizations and ED visits included CTD diagnosis and Black race (odds ratio [OR] 8.54 [95% confidence interval (95% CI) 1.84-39.58] and 3.04 [95% CI 1.02-9.12] for hospitalizations and OR 3.6 [95% CI 1.59-8.14] and 6.0 [95% CI 1.60-22.69] for ED visits, respectively). ESRD or death occurred among 15% of patients with a CTD. CONCLUSION: In pediatric patients transferring to an adult rheumatology clinic, continued insurance coverage and referral from a pediatric rheumatologist decreased delays in attending an adult visit; CTD and Black race were associated with high rates of unscheduled health care utilization.
Subject(s)
Patient Acceptance of Health Care , Rheumatic Diseases , Rheumatology , Transition to Adult Care , Adolescent , Female , Humans , Kidney Failure, Chronic/epidemiology , Male , Patient Acceptance of Health Care/statistics & numerical data , Referral and Consultation , Retrospective Studies , Rheumatology/statistics & numerical data , Safety-net Providers , Transition to Adult Care/statistics & numerical data , Young AdultABSTRACT
BACKGROUND: In the treatment of adult congenital heart disease (ACHD), the transfer of patients from pediatric cardiologists to ACHD cardiologists is of relevance. However, little is known about the clinical courses of ACHD patients that have been referred by non-CHD-specialized doctors (n-CSDs). METHODS: This retrospective cohort study included 230 patients (average age: 37 ± 15.2 years, male: 97) who were referred to a single specialized ACHD center between April 2016 and July 2019. We compared the characteristics and clinical courses between patients referred by n-CSDs and those referred by CHD-specialized-doctors (CSDs). RESULTS: Overall, 121 (53%) patients were referred by n-CSDs. Among them, 91 (75%) patients were referred by adult cardiologists. Univariate analysis showed that the patients referred by n-CSDs were older than those referred by CSDs (41.6 ± 16.3 vs. 32.0 ± 12.0 years, p < 0.01), were more likely to have simple CHD, and less likely to have severe CHD (27.0% vs. 12.8% and 16.5% vs. 40.4%, respectively, p < 0.01). Patients referred by n-CSDs were also more likely to have a history of loss of follow-up (16.5% vs. 3.7%, p < 0.01) and to require invasive treatments after referral, including cardiac surgeries and transcatheter interventions (47.9% vs. 26.6 %, p < 0.01). Notably, unintended invasive treatments that were not designated by the referring doctors were more frequently required in patients with moderate complexity referred by n-CSDs (50.0% vs. 23.3%, p = 0.02). CONCLUSIONS: Patients with moderate CHD complexity referred by n-CSDs are more likely to require unintended invasive treatments. Referrals to specialized ACHD centers may be most beneficial for these patients.
Subject(s)
Cardiologists/statistics & numerical data , General Practice/statistics & numerical data , Heart Defects, Congenital/therapy , Referral and Consultation/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Humans , Lost to Follow-Up , Male , Middle Aged , Retrospective Studies , Young AdultABSTRACT
INTRODUCTION: After the introduction of combination antiretroviral treatment, (ART) mortality in HIV-infected patients has dramatically decreased. However, it is still high in patients at risk, as adolescents transitioning to adult care (AC) without virologic control. The aim of this study was to characterize mortality and comorbidities of perinatally infected HIV (PHIV) patients after transition to AC. METHODS: A multicenter retrospective study from patients included in the CoRISpe-FARO Spanish cohort was conducted. PHIV patients who died after transition to AC between 2009 and 2019 were included. Clinical, immunovirologic characteristics, treatments received, comorbidities and causes of death were described. RESULTS: Among 401 PHIV patients, 14 died (3.5%). All were Spanish, 11/14 (78.6%) women. The median age at diagnosis was 1.5 years (interquartile range [IQR] 0.5-3.9), at transfer to AC was 18 years [16.1-19.9] and at death was 25.8 years [23.6-27.1]. In pediatric units [pediatric care (PC)], CD4+ nadir was 85 cells/µL [IQR 9.7-248.5] and 6/14 patients were classified as C-clinical stage. During AC, all patients were on C-clinical stage and CD4+ nadir dropped to 11.5 cells/µL [4.5-43.3]. cART adherence was extremely poor: in PC, 8/14 patients registered voluntary treatment interruptions; only one had undetectable VL at transition. In AC, 12/14 patients stopped treatment 2 or more periods of time. All deaths were related to advanced HIV disease. Mental health disorders were observed in 7/14 (50%). Main complications described: recurrent bacterial infections (57.1%), wasting syndrome (42.9%), esophageal candidiasis (28.6%) and Pneumocystis jirovecii pneumonia (28.6%). Four women had 11 pregnancies; 5 children were born (none infected). CONCLUSIONS: Young adults PHIV infected who transition to AC without virologic suppression or proven ability to adhere to ART are at high risk of mortality. Mortality was noted as a consequence of advanced HIV disease, frequent mental health problems and poor adherence to ART.
Subject(s)
HIV Infections/epidemiology , HIV Infections/mortality , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Anti-Retroviral Agents/therapeutic use , CD4 Lymphocyte Count , Child , Child, Preschool , Female , HIV Infections/drug therapy , Humans , Infant , Infectious Disease Transmission, Vertical , Male , Retrospective Studies , Spain/epidemiology , Viral Load , Young AdultABSTRACT
INTRODUCTION: Ethiopia has one of the largest number of adolescents living with HIV (ALHIV). As these adolescents reach adulthood they need to transfer from pediatric to adult-oriented clinics. Clear implementation guidelines for transition are lacking and factors associated with successful transition are inadequately investigated. Our objective was to describe the rate and age of transition from child- to adult-oriented care and the factors associated with transition success among ALHIV in selected health facilities in Ethiopia. METHODS: a retrospective cohort study of adolescents was conducted in eight health facilities in two regions of Ethiopia: Addis Ababa and the Southern Nations, Nationalities and Peoples´ Region (SNNPR). The study was embedded within a broader study originally aimed at studying clinical outcomes of adolescents. The proportion of adolescents who transitioned was calculated and the association between baseline characteristics and transition was assessed by bivariate and multivariate analysis. RESULTS: of 1072 adolescents, 8.7% transitioned to adult care. The most frequent age of transition was 15 (range: 10-22). Multivariate analysis generated two significant findings: adolescents from Addis Ababa were more to likely transitioned than adolescents from SNNPR (aOR: 2.18; 95% CI=1.17-4.06; p<0.01), as well as disclosed adolescents compared to those not disclosed of their HIV-status (aOR: 4.19; 95% CI=1.57-11.98; p<0.01). CONCLUSION: transition occurred in less than 10% of participants, in a wide range of age, indicating a lack of implementation policies regarding the transition process. Thereto, we found that adolescents from Addis Ababa and those disclosed of their disease, were more likely to transition. Further studies are needed to better understand factors associated with transition success.
Subject(s)
HIV Infections/therapy , Transition to Adult Care/statistics & numerical data , Truth Disclosure , Adolescent , Age Factors , Child , Cohort Studies , Cross-Sectional Studies , Ethiopia , Female , Humans , Male , Retrospective Studies , Young AdultABSTRACT
OBJECTIVE: To determine rates of retention and viral suppression among adolescents living with perinatally-acquired HIV who remained in pediatric care compared to those who transitioned to adult care. METHODS: We evaluated a natural experiment involving adolescents living with perinatally-acquired HIV who were attending a government-supported antiretroviral clinic in KwaZulu-Natal, South Africa. Prior to 2011, all adolescents transitioned to adult care at 12 years of age. Due to a policy change, all adolescents were retained in pediatric care after 2011. We analyzed adolescents two years before and two years after this policy change. Outcomes were retention in care and HIV viral suppression one year after transition to adult care or the 13th birthday if remaining in pediatric care. RESULTS: In the natural experiment, 180 adolescents who turned 12 years old between 2011 and 2014 were evaluated; 35 (20%) transitioned to adult care under the old policy and 145 (80%) remained in pediatric care under the new policy. Adolescents who transitioned to the adult clinic had lower rates of retention in care (49%; 17/35) compared to adolescents remaining in the pediatric clinic (92%; 134/145; p<0.001). Retention in care was lower (ARR 0.59; 95%CI 0.43-0.82; p = 0.001) and viral suppression was similar (ARR = 1.06, 95%CI 0.89-1.26; p = 0.53) for adolescents who transitioned to adult care compared to adolescents remaining in pediatric care. CONCLUSION: Adolescents living with perinatally-acquired HIV appear to have higher retention in care when cared for in pediatric clinics compared to adult clinics. Longer-term follow-up is needed to fully assess viral suppression.
Subject(s)
Anti-HIV Agents/therapeutic use , HIV Infections/drug therapy , Retention in Care/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Ambulatory Care Facilities , Child , Female , Health Policy , Humans , Male , South Africa , Survival Analysis , Transition to Adult Care/legislation & jurisprudence , Treatment OutcomeABSTRACT
Ketogenic therapy is now an accepted treatment for pediatric and adult patients with medically refractory epilepsy.1-3 However, young adults treated with a ketogenic diet face unique challenges when transitioning to adult neurology providers.4 The variable acceptance of dietary therapy, paucity of nutritionists and adult neurology providers educated in dietary therapy, and lack of insurance coverage for dietary education may interfere with transition to adult care. In addition, patients in this life stage may just begin to independently seek medical care, cook meals, and manage medications, making strict dietary limitations difficult.4 In this worldwide study, we surveyed 191 pediatric and adult neurology providers who prescribe ketogenic dietary therapy for epilepsy. Our response rate was 39% with a total of 74 valid surveys received. Our goal was to identify perceived barriers that inhibit effective transition and successful continuation of dietary therapy during transition to adult care. We found that dietary therapy is a more accepted treatment of intractable epilepsy in children (84%) than adults (17%) in all geographic areas. Although half of pediatric neurology providers (50%) transition their young adult patients on dietary therapy to adult providers, only 23% have a documented transition plan or a formal transition protocol. Most (87%) pediatric providers who prescribe the ketogenic diet feel the lack of sufficient adult providers who prescribe dietary therapy as a barrier to transitioning adolescent and young adult patients.
Subject(s)
Diet, Ketogenic/methods , Epilepsy/diet therapy , Neurologists/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Humans , Young AdultABSTRACT
BACKGROUND: Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from pediatric to adult care. The goal of this study was to examine disease activity and health-care utilization among young adults with cSLE who are undergoing or have recently completed the transfer to adult care. METHODS: The Pediatric Lupus Outcomes Study (PLOS) is a prospective longitudinal cohort study of young adults aged 18-30 diagnosed with cSLE. We conducted a cross-sectional analysis comparing 47 participants under the care of pediatric rheumatologists to 38 who had completed transfer to adult care. Demographics, disease manifestations, health- care utilization and transition readiness were compared between groups. RESULTS: Those in the post-transfer group had significantly lower medication usage and were less likely to have seen a rheumatologist in the past year. Disease manifestations, flare rates, and hospitalizations were similar between groups. Nearly a quarter of patients who had transferred to adult care reported difficulties with the process. CONCLUSION: Post-transfer patients had lower health-care utilization as evidenced by less medication usage and lack of rheumatology follow-up, in spite of the fact that disease activity was similar in both groups. Future studies will assess longitudinal changes in disease activity and damage in this population.
Subject(s)
Lupus Erythematosus, Systemic/therapy , Patient Acceptance of Health Care/statistics & numerical data , Transition to Adult Care/statistics & numerical data , Adolescent , Adult , Age of Onset , Child , Cross-Sectional Studies , Disease Progression , Female , Humans , Longitudinal Studies , Lupus Erythematosus, Systemic/complications , Lupus Erythematosus, Systemic/psychology , Male , Outcome Assessment, Health Care , Prospective Studies , Quality of Life , Severity of Illness Index , Young AdultABSTRACT
BACKGROUND: Due to a more stringent disability definition used for eligibility redetermination at age 18, individuals with disabilities may lose eligibility for the Supplement and Nutrition Assistance Program (SNAP). OBJECTIVE: This study examines how the transition to adulthood may affect the association between food security and self-rated health and healthcare needs for individuals with disabilities. METHODS: The study uses five years of data (2011-2015) from the National Health Interview Survey (NHIS). One health indicator, self-rated health status, and two indicators of unmet healthcare needs, delayed medical care and not receiving medical care due to cost, are analyzed as dependent variables. The effects of food security status on health and health-related outcomes are closely examined for the four groups: youth without disabilities, youth with disabilities, young adults without disabilities and young adults with disabilities. RESULTS: Results indicate a statistically significant association between food security status and self-rated health and unmet healthcare needs in late childhood and young adulthood. Such association is stronger for young adults than for youth. The association between low food security and self-rated health and health-related outcomes does not significantly differ between the two youth groups or the two young adult groups by disability status. CONCLUSIONS: Suggestions for improving accessibility of public food and nutrition programs are discussed. The study also suggests the importance of creating a healthcare system that benefits every member of the society.