scholarly journals Transition of young adults with endocrine and metabolic diseases: the TRANSEND cohort

2020 ◽  
Author(s):  
Enora Le Roux ◽  
Florence Menesguen ◽  
Isabelle Tejedor ◽  
Marc Popelier ◽  
Marine Halbron ◽  
...  

Objective. The transition period between paediatric and adult medicine is associated with poor patient outcomes and important numbers of patients lost to follow up. Describe the cohort of patients in adult care who benefit from a new transition program based on case management approach. Design. A longitudinal study was led since September 2016 in a French University Hospital. Methods. Patients with any endocrine or metabolic disease diagnosed during childhood and transferred to adult care were included. The transition program includes 3 steps based on case management: liaising with paediatric services, personalising care pathways, liaising with structures outside hospital (General practitioner, educational and social sector). Results. The cohort included 500 patients with malignant brain tumour (n=56 (11%)), obesity (n=55 (11%)), type 1 diabetes (n=54 (11%)), or other disease (n=335 (67%)). They were aged 19 in median at transfer, sex ratio: 0.5. At 21 months of follow-up in median, 439 (88%) have regular follow-up in or outside the hospital, 47 (9%) have irregular follow-up (absence at the last appointment or no appointment scheduled within the time recommended), 4 stopped care on the doctor's advice, 4 died, 3 moved, 3 refused care. The program involved 9,615 case management acts, 7% of patients required more than 50 acts. Patients who required most of support are usually affected by a neuro-cognitive disorder and have social issues. Conclusions. The case manager addresses the complex needs of patients. With time, the cohort will provide unprecedented long-term results of patients with various conditions who went through transition.

2020 ◽  
Vol 4 (Supplement_1) ◽  
Author(s):  
Enora Le Roux ◽  
Florence Menesguen ◽  
Isabelle Tejedor ◽  
Marc Popelier ◽  
Marine Halbron ◽  
...  

Abstract Context. The transition period between pediatric and adult medicine is associated with poor patient outcomes and an important number of patients lost to follow up. Intervention exist but the few published randomized trials do not allow to study long-term patient outcomes nor intervention sustainability in time. Objective. Describe the cohort of patients in adult care who benefit from a new transition program based on case management approach, its activity and follow-up outcomes. Methods. A longitudinal study was led since September 2016 in adult services of endocrinology, nutrition and diabetology of a French University Hospital. Patients with any endocrine disease diagnosed during childhood and transferred to adult care were included. The care pathway for these patients was built in three steps. Step 1 is dedicated in liaising with pediatric services and patient to facilitate its first visit in adult care. Step 2 defines the care pathway in adult service based on the needs assessment realized by the coordinator upon the patient’s arrival in adult service. Step 3 focuses in liaising with structures outside hospital (GP, educational and social sector). Thorough the follow-up, the coordinator is identified as the key contact by the patients. Attendance to medical appointments, clinical, and social data are collected throughout patient follow-up. Results. Since 3 years, 500 patients benefited from the case management mainly for their obesity (n=91, 18%), type 1 diabetes (n=54, 11%), malignant brain tumor (n=68, 14%) or congenital hypopituitarism (n=42, 8%). They were aged 19 in median at transfer in adult care, sex ratio: 0,5, A large majority live in the parental home (409, 82%), 169 (34%) are university students, 130 (26%) are in high school, 90 (18%) are in medico-social institution. Patients who required most of support from the coordinator usually combine one (or more) somatic disease and either a neuro-cognitive disorder or a psychiatric disorder, they all have social difficulties. In patients with more than 3 months of follow-up (median: 18 months), 22/418 (5%) are out of follow-up. Concerning the patients for whom the follow-up is 36 months or more, the percentage of out of lollow-up is the same: 5% Conclusions. The case manager addresses the complex needs of diverse patients. With time, the cohort will provide unprecedented long-term results of patients with various conditions who went through transition.


2021 ◽  
Vol 3 (1) ◽  
Author(s):  
Paula Collette ◽  
Luisa C. Klein ◽  
Lisa M. Körner ◽  
Gundula Ernst ◽  
Sandra Brengmann ◽  
...  

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.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e032955
Author(s):  
Masaki Fujiwara ◽  
Masatoshi Inagaki ◽  
Taichi Shimazu ◽  
Masafumi Kodama ◽  
Ryuhei So ◽  
...  

IntroductionOne of the reasons for the high mortality rate from cancer in people with schizophrenia is delay in diagnosis. Many studies have shown lower cancer screening rates in people with schizophrenia; however, there are no interventions for people with schizophrenia to increase cancer screening. Therefore, we developed a case management (CM) intervention to encourage participation in cancer screening. The purpose of this study was to examine the efficacy of CM to encourage participation in cancer screening for people with schizophrenia, with particular focus on colorectal cancer screening by faecal occult blood testing, compared with usual intervention (UI), namely, municipal public education.Methods and analysisThis is an individually randomised, parallel group trial with blinded outcome assessments. The participants will be randomly allocated to either the CM plus UI group or UI alone group in a 1:1 ratio using a web-based program at a data management centre. The primary end point of the study is participation in colorectal cancer screening in the year of intervention, which will be assessed based on municipal records.Ethics and disseminationThis study is performed in accordance with Ethical Guidelines for Medical and Health Research Involving Human Subjects published by Japan’s Ministry of Education, Science, and Technology and the Ministry of Health, Labour, and Welfare and the modified Act on the Protection of Personal Information as well as the Declaration of Helsinki. This study was approved by the institutional ethics committee at the Okayama University Graduate School of Medicine, Dentistry, and Pharmaceutical Sciences and Okayama University Hospital on 23 April 2019 (approval number: RIN1904-003). The findings of this trial will be submitted to an international peer-reviewed journal.Trial registration numberUMIN000036017.


2020 ◽  
Vol 35 (1) ◽  
pp. 104-112
Author(s):  
Vilja Koskensalo ◽  
Marianne Udd ◽  
Mia Rainio ◽  
Jorma Halttunen ◽  
Matias Sipilä ◽  
...  

Abstract Background Transpancreatic biliary sphincterotomy (TPBS) is an advanced cannulation method for accessing common bile duct (CBD) in endoscopic retrograde cholangiopancreatography (ERCP). If CBD cannulation is difficult, an endoscopist can open the septum between the pancreatic and biliary duct with a sphincterotome to gain access. Long-term results of this procedure are unclear. We wanted to evaluate the short- and long-term complications of TPBS on patients with native papilla and benign indication for ERCP. Patients and Methods ERCPs performed in Helsinki University Hospital between 2007 and 2013 were reviewed. The study group comprised 143 consecutive patients with TPBS and 140 controls (CG). Data were collected from patient records and a phone survey was performed as a follow-up ≥ 4 years after the index ERCP. Results Post-ERCP pancreatitis (PEP) developed in seven patients (4.9%) in TPBS and one patient (0.7%) in CG (p = 0.067). The rates of other acute complications were similar between the groups. ERCP ended with no access to CBD in four cases (2.8%) in TPBS. The median length of follow-up was 6 years in TPBS and 7 years in CG. During this period, three patients (2.1%) in TPBS and six patients (4.3%) in CG suffered from acute pancreatitis (AP) (p = 0.238). One (0.7%) patient in CG and none in TPBS developed chronic pancreatitis (CP). Abdominal pain was suffered by ten patients (6.9%) in TPBS and twelve patients (8.6%) in CG daily, whereas by six patients (4.2%) in TPBS and twelve patients (8.6%) in CG weekly. Conclusion TPBS is a useful procedure, with acceptable complication rates. No significant difference occurred between the groups when evaluating the short-term or long-term complications with a follow-up period of four to 10 years. Additionally, no significant differences occurred in upper abdominal pain, episodes of AP, or development of CP.


1993 ◽  
Vol 23 (1) ◽  
pp. 43-59 ◽  
Author(s):  
Steven S. Martin ◽  
Frank R. Scarpitti

The need for drug abuse treatment to reduce recidivism in prison systems has led to increasing interest in treatment alternatives for correctional clients. The research on the effectiveness of treatment alternatives, however, has lagged behind the interest in and implementation of new programs. This article reports on early findings from an ongoing longitudinal study of the efficacy of an intensive case management approach, Assertive Community Treatment (ACT), for treating parolees with past drug problems, compared with a group of parolees who were not offered this treatment program. Using follow-up data on 135 subjects interviewed at release from prison and then reinterviewed about six months later, the ACT group and comparison group are examined in terms of recidivism and relapse to drug use. Bivariate analyses suggest little difference between the two groups. Multivariate analyses, however, suggest several important variables that were not manipulated in this “quasi-experiment,” but are predictive of relapse and recidivism. Although the limited sample size available at present precludes any definitive conclusions, discussion focuses on the direction of findings and highlights the necessity for multivariate controls in assessing the effectiveness of any intervention with criminal justice clients.


Rheumatology ◽  
2021 ◽  
Author(s):  
Silja Kosola ◽  
Heikki Relas

Abstract Introduction Transition of adolescents with chronic diseases from pediatric healthcare to adult care requires attention to maintain optimal treatment results. We examined changes in health-related quality of life (HRQoL) and disease activity among juvenile idiopathic arthritis (JIA) patients with or without concomitant psychiatric diagnoses after transfer to an adult clinic. Methods We prospectively followed 106 consecutive patients who were transferred from the New Children’s Hospital to the Helsinki University Hospital Rheumatology outpatient clinic between April 2015 and August 2019 and who had at least one follow-up visit. HRQoL was measured using 15D, a generic instrument. Results The patients’ median age at transfer was 16 years and disease duration 4.0 years. Patients were followed for a median of 1.8 years. Disease activity and overall HRQoL remained stable, but distress (dimension 13 of 15D) increased during follow up (P=0.03). At baseline, patients with at least one psychiatric diagnosis had lower overall 15D scores (0.89±0.14 vs. 0.95±0.05, P<0.01) and higher disease activity (Disease Activity Score 28; 1.88±0.66 vs. 1.61±0.31, P=0.01) than patients without psychiatric diagnoses. The difference in overall 15D persisted over the study period. Conclusions Transition phase JIA patients with psychiatric diagnoses had lower HRQoL than other JIA patients. Despite reduced disease activity and pain, HRQoL of patients with psychiatric diagnoses remained suboptimal at the end of follow-up. Our results highlight the necessity of comprehensive care and support for transition phase JIA patients.


Author(s):  
Younes Cherradi ◽  
Rajaa Afifi ◽  
Wafaa Khannoussi ◽  
Mohammed Firwana ◽  
Anass Rahaoui ◽  
...  

Background and objective: Surgery was considered for years the standard treatment for all stages of liver hydatid cysts (LHC). Percutaneous treatment has becomes a fast, reliable and more efficient method in selected cases. The purpose of this study is to evaluate the effectiveness of percutaneous treatment of LHC on the basis of our department long-term results. Patients and Methods: This study includes all patients who benefited from percutaneous treatment for LHC from December 1998 to April 2012. Puncture aspiration, injection, and re-aspiration (PAIR) were used for hydatid cysts smaller than 6 cm. Larger cysts, infected cysts and those with biliary fistula were treated by puncture associated to drainage (PA-PD). Absolute alcohol was used as sclerosing agent. Reduction of the size of the cyst more than 50%, pseudo-tumour echo pattern and disappearance of the cyst at the follow-up were retained as criteria of treatment efficacy. Results: Two hundred thirty patients (136 female and 94 male; mean age: 35 years old) with 278 LHC underwent percutaneous treatment. Mean initial cyst diameter was 76.8 mm [20-180 mm]. According to Gharbi's classification, types I and II LHC accounted for 74% and 25% respectively. Fourteen patients (6%) presented with an infected cavity and 27 patients (12%) had a biliary fistula at diagnosis (12%). PA-PD was initially performedin 23 patients. No mortality, abdominal dissemination, or tract seeding occurred. Minor complications like urticaria, cutaneous rash and fever were reported in 24 patients (10%). One case of anaphylactic shock was reported with good evolution. Mean hospitalization time was 3 days ± 1.5 for uncomplicated cases and 16.5 days± 4.2 for complicated cases. 229 out of 230 patients were cured, whereas one recurrence has been reported. Conclusion: Percutaneous treatmentis efficient and safe and offers complete cure in selected patients with the advantage of short hospitalization. Keywords: Drainage, Hydatid Cyst, Liver, Morocco, Percutaneous Puncture, Ultrasound (US)


2016 ◽  
Vol 33 (S1) ◽  
pp. S480-S481
Author(s):  
J.H. Jeong ◽  
K.H. Lee ◽  
D.I. Jon

ObjectiveThis study was to evaluate the effect of an assertive community treatment (ACT) program on psychiatric symptoms, global functioning, life satisfaction, and recovery-promoting relationships among individuals with mental illness.MethodsThirty-two patients were part of the ACT program and 32 patients matched for age, sex, and mental illness were in a standard case-management program and served as a control group. Follow-up with patients occurred every 3 months during the 15 months after a baseline interview. Participants completed the Brief Psychiatric Rating Scale (BPRS), Global Assessment of Functioning (GAF) Scale, Life Satisfaction Scale, and Recovery-Promoting Relationship Scale (RPRS).ResultsAccording to the BPRS, the ACT group showed a significant reduction in symptom severity, but the ACT program was not significantly more effective at reducing psychiatric symptoms from baseline to the 15-month follow-up compared to the case-management approach. The ACT group showed more significant improvement than the control group in terms of the GAF Scale. Both groups showed no significant differences in the change of life satisfaction and in the change of recovery-promoting relationships. We observed a significant increase in recovery-promoting relationships in the control group, but the group × time interactions between groups were not statistically significant.ConclusionsIn this study, we observed that ACT was significantly better at improving the GAF than case management. However, ACT did not demonstrate an absolute superiority over the standard case-management approach in terms of the BPRS and the measures of life satisfaction and recovery-promoting relationships. ACT, however, may have some advantages over a standard-case management approach.Disclosure of interestThe authors have not supplied their declaration of competing interest.


2016 ◽  
Vol 2 (3) ◽  
pp. 00039-2016 ◽  
Author(s):  
Hannah Burke ◽  
Jenny Davis ◽  
Sian Evans ◽  
Laura Flower ◽  
Andrew Tan ◽  
...  

Up to 10% of asthmatics have “difficult asthma”; however, they account for 80% of asthma-related expenditure and run the highest risk of acute severe exacerbations. An estimated 75% of admissions for asthma are avoidable. Guidelines advise that these patients be managed by an experienced specialist multidisciplinary team (MDT). We aimed to assess the impact of a case management strategy delivered via specialist MDTs on acute healthcare utilisation of patients with frequent asthma admissions.An MDT (consultant, specialist nurse, physiotherapist and psychologist) case management strategy was introduced in 2010 at University Hospital Southampton Foundation Trust (Southampton, UK) to support patients with frequent asthma admissions during admission and then in clinic. To assess efficacy, we systematically searched the hospital database for patients acutely admitted for asthma on two or more occasions in 2010, 2011 and 2012. Data were collected retrospectively covering patient demographics, admission details, asthma severity and comorbidity.From 2010 to 2012, 84 patients were admitted on two or more occasions per year (80% female, mean body mass index 31 kg·m−2 and 55% psychological comorbidity). After introducing an MDT approach repeat asthma admissions fell by 33% from 127 in 2010 to 84 in 2012 (p=0.0004). In addition, bed days fell by 52% from 895 in 2010 to 430 in 2010 (p=0.015).An MDT case management approach significantly reduces hospitalisation in difficult asthma patients with prior frequent admission.


Author(s):  
Saskia D’Sa ◽  
Deirdre J. Foley ◽  
Kerrie Hennigan ◽  
Maria Kelly-Conroy ◽  
Anne Quinn ◽  
...  

Abstract Introduction Transition from adolescence to adult care is very challenging for most patients. Without appropriate appointments and education, adolescents can get lost to follow up within one-year of transitioning to adult care (Mistry et al. Diabet Med 32(7):881–885, 2015). Loss to follow-up can increase risks of adverse short and long term diabetes-related complications, with healthcare contacts mainly limited to crisis-based management (Iversen et al. Scand J Caring Sci 33(3):723–730, 2019). Aims The purpose of this study was to evaluate the patient’s perspective of the process of transition from paediatric to adult-based diabetes services in the Mid-West Region of Ireland. Methods We implemented a new transition clinic at University Hospital Limerick with the collaboration of paediatric and adult endocrinology teams. Eighteen patients opted to attend the clinic, but only 17 patients consented to participate in a qualitative assessment study and completed questionnaires before and after the transition clinic. Results and conclusion In terms of medical management, patients had a good understanding of hypoglycaemia and insulin dose adjustment principles, but were least comfortable with carbohydrate counting. Patients self-ranked their knowledge on driving and sexual health with a diagnosis of diabetes as poor, in comparison to understanding effects of alcohol and smoking on diabetes. Overall, a majority of the respondents felt more confident in moving to adult-care after attending the transition clinic.


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