scholarly journals SUN-080 We Mind Your Step: Understanding and Preventing Drop-Out in the Transition from Paediatric to Adult Tertiary Endocrine Healthcare

2020 ◽  
Vol 4 (Supplement_1) ◽  
Author(s):  
Kirsten Davidse ◽  
Anne-Loes Staa ◽  
Karlijn Pellikaan ◽  
Wanda Geilvoet ◽  
Judith Eck ◽  
...  
Keyword(s):  
Young Adults ◽  
Transition Process ◽  
Drop Out ◽  
University Hospital ◽  
Referral Letter ◽  
Endocrine Disorders ◽  
Physical Consequences ◽  
Lost To Follow Up ◽  
Regular Transition

Abstract Introduction Transition from paediatric to adult endocrinology is a challenge for adolescents, their families and their healthcare professionals. Previous studies show that up to 25% of young adults with endocrine disorders are lost to follow-up once they move out of paediatric care. This poses a health risk for young adults, as lack of medical treatment and surveillance can have both psycho-social and physical consequences. Apart from absenteeism from school or work, this can lead to serious and expensive medical complications like Addison crisis. Methods In 2019 we studied electronic medical records of 387 patients who were over 15 years old when they attended the paediatric endocrine outpatient clinic (OPC) of our medical centre in 2013-2014. We collected data from medical charts, the hospital digital agenda and medical correspondence. Results Of 387 adolescents, 161 (42%) did not need adult endocrine follow-up because paediatric endocrine care was only puberty- or growth-related. Forty-six patients did not enter regular transition because they 1) participated in a pilot to improve transition (N=10), 2) had intellectual disability (ID) and transferred to ID care (N=28), or 3) died (N=8, mostly cancer-related). Hundred-and-eighty patients entered regular transition: 49 (27%) to a regional hospital and 131 (73%) within our university hospital. Of these 131 patients, 33 (25%) were lost to follow up; in 24 of them (73%), the invitation for the adult OPC had never been sent. Loss to follow up occurred when three subsequent critical steps failed: 1) the adult endocrinologist had not received or read the paediatrician’s referral letter and/or had not invited the patient; 2) the paediatrician had not checked whether the appointment was really made and received by the patient and 3) the patients and/or caregivers had not alarmed the hospital when no invitation for an appointment was received. Conclusion We found a 25% dropout during transfer from paediatric to adult tertiary endocrine care. Starting the transition process early and in a structured manner, as well as assigning a transition coordinator, can prevent part of the dropouts. However, 73% of all dropouts appeared to be attributable to failure of practical, logistic steps. In order to prevent this part of the dropouts, we provide practical recommendations for all three parties involved: 1) the adult endocrinologist should carefully read paediatricians’ letters and check whether action is required (i.e. check whether an appointment is requested) 2) the paediatrician should ascertain whether the appointment is really made and received by the patient 3) the patients and/or caregivers should be instructed to alarm the hospital when they do not receive the appointment. These actions require relatively little effort and may prevent the part of drop-outs that is caused by logistic failures.

scholarly journals Pre-treatment lost to follow up among presumptive tuberculosis patients in a tertiary care centre, South India

2020 ◽  
Vol 7 (6) ◽  
pp. 2266
Author(s):  
Revathi Ulaganeethi ◽  
Divya Nair ◽  
Gomathi Ramaswamy ◽  
Shivangi Choubey ◽  
Saka Vinod Kumar ◽  
...  
Keyword(s):  
Sputum Sample ◽  
Tertiary Care ◽  
Drop Out ◽  
Sputum Smear ◽  
Referral Letter ◽  
Tertiary Care Centre ◽  
The Common ◽  
Pre Treatment ◽  
Lost To Follow Up

Background: At tertiary care centres, presumptive tuberculosis (TB) patients who come from far off places and are more likely to drop out during diagnosis or before treatment initiation. We aimed to describe the proportion lost during diagnosis or before treatment and also assessed the reasons for the loss to follow up.Methods: We did a hospital based descriptive study, reviewing laboratory register and referral register to assess the status of submission of second sputum and referral letter, respectively, for patients visiting a designated microscopy centre at a teaching hospital. Reasons for lost to follow up were assessed through telephonic interviews.Results: Out of a total 2025 presumptive TB patients, 315 (15.6%, 95% CI 14.0-17.2) did not provide a second sputum sample. ‘Symptoms had reduced or subsided’ (30%), ‘not aware that second sample needs to be given’ (23%) and ‘visited other hospital’ (14%) were the common reasons reported for the same. A total of 270 (13.3%) patients were sputum smear positive; of them 92 (34.1% CI 28.4-40.1) did not collect referral letter. Among those who were referred, 66% were referred within a week. Deaths, ‘busy in routine work’ and treatment at other government hospitals were the common reasons reported for not collecting referral letter.Conclusions:One out of seven patients did not submit a second sputum sample and one third of sputum smear positive TB patients did not collect the referral letter. Follow up mechanisms needs to be strengthened in the national program to reduce this pre-treatment lost to follow up.  

scholarly journals Clobazam as Add-on Therapy in Children with Epileptic Encephalopathy

2006 ◽  
Vol 33 (2) ◽  
pp. 209-213 ◽  
Author(s):  
Rosana Carvalho Silva ◽  
Maria Augusta Montenegro ◽  
Carlos A.M. Guerreiro ◽  
Marilisa M. Guerreiro
Keyword(s):  
Maximum Tolerated Dose ◽  
Epileptic Encephalopathy ◽  
Partial Epilepsy ◽  
University Hospital ◽  
Pediatric Epilepsy ◽  
Adults And Children ◽  
Effective Doses ◽  
One Year ◽  
Lost To Follow Up

ABSTRACT:Rationale:Clobazam has been used successfully in adults and children with partial epilepsy. The purpose of this study was to evaluate the safety and efficacy of clobazam as add-on therapy in children with epileptic encephalopathy.Methods:This was a retrospective study conducted at the pediatric epilepsy clinic of our university hospital. Children less than 18-years of age with epileptic encephalopathy were included in the study. Clobazam was introduced as add-on therapy, starting with 5 mg/Kg/day and increased in minimally effective doses, up to the maximum tolerated dose. Data were obtained from clinical files and follow-up visits.Results:Ninety-seven patients were included in the study (39 girls), aged between 1 and 17-years-old (mean = 9.9). Twenty-six patients had Lennox-Gastaut syndrome, seven had myoclonic astatic epilepsy, nine had West syndrome and, in 57 patients, the type of epileptic encephalopathy could not be determined. Clobazam dosage ranged from 5 to 60 mg/day (mean = 37.5 mg/day). Forty (41%) patients presented with adverse events, most of which were mild and transitory, and clobazam needed to be withdrawn in only 11 patients. Nine (9.2%) patients were seizure-free after clobazam adjunctive therapy. In 11 (11.3%) patients seizure improvement was >75%, in 16 (16.5%) it was >50%, in 17 (17.5%) improvement was <50% and in 44 (45.5%) there was no change in seizure frequency. Three patients were lost to follow-up. In 85% of the patients with seizure improvement, the results lasted for more than one year.Conclusion:Clobazam is safe and effective in the treatment of epileptic encephalopathies of childhood.

scholarly journals A transition clinic intervention to improve follow-up rates in adolescents and young adults with congenital heart disease

2020 ◽  
Vol 30 (5) ◽  
pp. 633-640 ◽  
Author(s):  
Stephanie S. Gaydos ◽  
Shahryar M. Chowdhury ◽  
Rochelle N. Judd ◽  
Kimberly E. McHugh
Keyword(s):  
Congenital Heart Disease ◽  
Young Adults ◽  
Heart Disease ◽  
Congenital Heart ◽  
Adolescents And Young Adults ◽  
Transition Readiness ◽  
Transition Clinic ◽  
Lost To Follow Up ◽  
The Impact

AbstractBackground:Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.Methods:Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.Results:Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.Conclusions:A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

The “combined team” transition clinic model in endocrinology results in high adherence rates and patient satisfaction

2019 ◽  
Vol 32 (5) ◽  
pp. 505-511 ◽  
Author(s):  
Orit Twito ◽  
Rachel Shatzman-Steuerman ◽  
Nitzan Dror ◽  
Dan Nabriski ◽  
Alon Eliakim
Keyword(s):  
Patient Satisfaction ◽  
Patient Adherence ◽  
Demographic Data ◽  
Transition Process ◽  
Clinical Impact ◽  
Endocrine Disorders ◽  
Transition Model ◽  
Transition Clinic ◽  
High Adherence

Abstract Background A structured transition process for young adults with chronic medical conditions from pediatric to adult clinics is strongly promoted. However, the most appropriate transition model has not yet been determined. This study evaluated the effect of a “combined team” Endocrinology Transition Clinic model, including a joint meeting with the patient and pediatric and adult endocrinologists, regarding medical treatment, adherence to follow-up and patient satisfaction with the process. Methods Clinical and demographic data of patients admitted to the Endocrinology Transition Clinic were collected. The clinical impact of the transition meeting was evaluated based on treatment modifications and patient adherence to follow-up. Patient satisfaction was evaluated using a questionnaire. Results From September 2014 through November 2018, 107 patients attended the Endocrinology Transition Clinic, 85.0% were females, mean age 19.7 ± 2.2 years (range 16–29), 97.2% were unmarried. The most common endocrine disorders were obesity (41.1%), Hashimoto’s thyroiditis (41.1%) and ovarian hyperandrogenism (38.3%). The Transition Clinic visit modified treatment and/or evaluation for 48 (44.8%) patients. Adherence to follow-up in the adult clinic was 82.9% and was not associated with gender (p = 0.366), ethnicity (p = 0.725), age at transition (p = 0.479) or obesity (p = 0.375). Overall satisfaction reported by 65/85 patients was high (86.8%), although higher among patients who were adherent to follow-up (89.4% vs. 65.6%, p = 0.006). Conclusions The “combined team” transition model in endocrinology requires relatively few resources and has considerable clinical impact, high adherence to follow-up and high patient satisfaction rate. Implementing this model at the interface of pediatric and adult endocrinology units, and possibly in other medical fields, is feasible and efficient.

scholarly journals Retrospective Study of High Hemoglobin Levels in 56 Young Adults

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 1262-1262
Author(s):  
Alexandra Desnoyers ◽  
Michel Pavic ◽  
Jean-Francois Castilloux ◽  
Patrice Beauregard ◽  
Line Delisle ◽  
...  
Keyword(s):  
Young Adults ◽  
Complete Blood Count ◽  
Conflicts Of Interest ◽  
University Hospital ◽  
Jak2 Mutation ◽  
Female Ratio ◽  
Myeloproliferative Syndrome ◽  
Age Range ◽  
Made In

Abstract Introduction. Erythrocytosis is a common reason for a hematology consultation. Most of the patients are over 50 years of age. The diagnostic approach is already well established, but determining the etiology of erythrocytosis in the young adult may be a real diagnostic challenge. Hereditary causes are often first suspected, but the real etiologic panorama of erythrocytosis in this population is still poorly understood. Methods. This Canadian single-center retrospective observational study was conducted in a Québec university hospital over a period of 20 years (1995 - 2015). Data were collected by a single investigator in a standardized database. From a computer-generated query over a chosen period of time, all patients between 16 and 35 years of age with high levels of hemoglobin or hematocrit were selected (hemoglobin > 185 g/L and/or hematocrit > 0.52 in men; hemoglobin > 165 g/L and/or hematocrit > 0.48 in women). Files were analyzed after approval from the scientific and ethical committees. Results. 426 patients fulfilled the above criteria (on a total of 113 453 complete blood counts conducted in the same age range during the analysis period), but only 56 benefitted from further investigations. Only those cases were included in the study. The male-to-female ratio was 5 : 3. Among them, 59% were smokers, 11% had a high alcohol intake and 27% were using drugs on a regular basis. Obesity was present in 43% of patients (morbid obesity in nearly one third of cases). More than half of the patients had one visit or less with a specialist for investigation of their erythrocytosis. Among those who had a medical follow-up, the median length is 42 months. Erythropoietin was measured in 23% of cases and the JAK2 mutation was screened in 18% of cases. The diagnosis of an acquired polycythemia was made in 41% of cases: hypoxemia (n= 13), renal disorders (n = 6) and drug-induced (n= 4). No case of myeloproliferative syndrome was identified. Two cases were associated with congenital polycythemia (high oxygen affinity hemoglobinopathy). Diagnosis of relative polycythemia was made in slightly over 10% of cases (n= 7). In 24 patients, no conclusive cause could be identified. One third of those patients (n= 8) were hospitalised for mental health decompensation or self-induced intoxication when high hemoglobin levels were detected. When JAK2 mutation testing was not available, the complete blood count was further analyzed and it did not provide any evidence for myeloproliferative syndrome. One in five patients received treatment for their polycythemia, whatever the cause: aspirin (n= 7) and phlebotomy (n= 5). There has been no reported patient death associated with polycythemia or its treatment. Only two major complications occurred: thrombosis (n =1) and bleeding (n= 1). Conclusion. This is the first study to specifically analyze erythrocytosis in young adults. Despite the retrospective design, it demonstrates patient management often inconsistent with the actual recommendations and a lack of follow-up after initial investigations. Congenital polycythemia deserves to be systematically evoked in this age range, but represents only a small part of cases. Acquired polycythemia dominates the etiologies whereas myeloproliferative syndromes were not depicted in this study. Harmonisation of patient care for young adults with erythrocytosis is therefore highly desirable. Disclosures No relevant conflicts of interest to declare.

scholarly journals Endocrine manifestations in a cohort of 63 adulthood and childhood onset patients with Langerhans cell histiocytosis

2019 ◽  
Vol 181 (3) ◽  
pp. 275-285 ◽  
Author(s):  
Yempabou Sagna ◽  
Carine Courtillot ◽  
Joseph Y Drabo ◽  
Abdellatif Tazi ◽  
Jean Donadieu ◽  
...  
Keyword(s):  
Langerhans Cell Histiocytosis ◽  
Age Of Onset ◽  
Tertiary Care ◽  
Langerhans Cell ◽  
University Hospital ◽  
Endocrine Disorders ◽  
Care Hospital ◽  
Childhood Onset ◽  
Gonadotropin Deficiency

Objective Langerhans cell histiocytosis (LCH) is a rare inflammatory myeloid neoplasm which can infiltrate any organ or tissue. Endocrine involvement has mostly been described in case reports and small retrospective studies. We aimed to describe endocrine manifestations in a large cohort of adulthood onset (AO) and childhood onset (CO) patients with LCH. Design Single-center observational study conducted between January 2002 and December 2017 at Pitié-Salpêtrière University Hospital (Paris, France), a tertiary care hospital. Method Clinical, biological and morphological evaluations of pituitary, gonadal, adrenal and thyroid function evaluations performed in 63 consecutive patients with LCH (AO patients: 40, CO patients: 23). Fifty-eight patients underwent follow-up assessments. Results Complete pituitary evaluation was performed in 38/63 patients (60.3%); at least one anterior pituitary dysfunction (APD) was found in 63.2% of them. In this subgroup of patients, the most prevalent deficiencies were diabetes insipidus (DI) and GHD (55.3% each), followed by gonadotropin deficiency (34.2%) and thyrotropin deficiency (23.7%). In the subgroup of the 25 incompletely evaluated patients, we found DI in 44%, GHD in 50%, gonadotropin deficiency in 30.4% and thyrotropin deficiency in 16%. APD was more common in CO patients (P = 0.003) but was not systematically associated with DI regardless of the age of onset. Endocrine dysfunction was most often permanent; moreover, occurrence of new deficiencies has been described during follow-up. Conclusion The spectrum of endocrine disorders appears to be large in LCH (both in AO and CO patients) and should be evaluated carefully at diagnosis and during follow-up. APD was not always associated with DI.

scholarly journals Investigating Outcomes of Adolescents and Young Adults (10–24 Years of Age) Lost to Follow-up from Tuberculosis Treatment in Gaborone, Botswana

2019 ◽  
Vol 38 (10) ◽  
pp. e271-e274
Author(s):  
Leslie A. Enane ◽  
Elizabeth D. Lowenthal ◽  
Tonya Arscott-Mills ◽  
Jessica Eby ◽  
Cynthia Caiphus ◽  
...  
Keyword(s):  
Young Adults ◽  
Tuberculosis Treatment ◽  
Adolescents And Young Adults ◽  
Lost To Follow Up

scholarly journals Use of Paclitaxel to Successfully Treat Children, Adolescents, and Young Adults with Kaposi Sarcoma in Southwestern Tanzania

Children ◽  
2021 ◽  
Vol 8 (4) ◽  
pp. 275
Author(s):  
Hamidu Adinani ◽  
Liane Campbell ◽  
Nader Kim El-Mallawany ◽  
Jeremy Slone ◽  
Parth Mehta ◽  
...  
Keyword(s):  
Young Adults ◽  
Treatment Failure ◽  
Kaposi Sarcoma ◽  
Adolescents And Young Adults ◽  
Term Survival ◽  
Middle Income ◽  
Middle Income Countries ◽  
Special Circumstances ◽  
Lost To Follow Up

Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low- and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1–21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive—71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0–83.5, IQR 19.7–41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment.

Feline ophthalmomyiasis externa caused by Cuterebra larvae: four cases (2005–2020)

2021 ◽  
pp. 1098612X2110130
Author(s):  
Brittany N Schlesener ◽  
Elizabeth A Peck ◽  
Eric M Teplitz ◽  
Filipe Espinheira Gomes ◽  
Dwight D Bowman ◽  
...  
Keyword(s):  
Medical Records ◽  
Clinical Signs ◽  
Case Series ◽  
University Hospital ◽  
Nictitating Membrane ◽  
Cornell University ◽  
Unilateral Disease ◽  
The Right ◽  
Lost To Follow Up

Case series summary Described are four cats diagnosed with ophthalmomyiasis externa caused by Cuterebra larvae. Medical records were retrospectively reviewed to identify cats with ophthalmomyiasis externa between 2005 and 2020 at Cornell University Hospital for Animals. Signalment, history, clinical and diagnostic findings, treatment and outcome were recorded. All cats were young (< 3 years of age), had outdoor access and were initially examined during the summer months. All cases had unilateral disease with the right eye affected. Two cases had nictitating membrane lesions and two had orbital disease. Concurrent superficial corneal ulceration was present in three cats. Two cats suffered from pyrexia, suspected secondary to inflammation from the larval infestation. Successful larval removal was performed in all cats, which resulted in improvement of discomfort and clinical signs. A corneal ulcer persisted in one cat, which was lost to follow-up prior to ulcer resolution. Parasite identification confirmed Cuterebra species infestation in all cases. Relevance and novel information To the authors’ knowledge, this is the first report of feline ophthalmomyiasis externa caused by Cuterebra species. Parasite removal was successful in restoring comfort and resolving clinical signs in all cats with adequate follow-up information.

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