scholarly journals Effects of childhood-onset SLE on academic achievements and employment in adult life

2020 ◽  
pp. jrheum.191004
Author(s):  
Noortje Groot ◽  
Anne Kardolus ◽  
Marc Bijl ◽  
Radboud Dolhain ◽  
Onno Teng ◽  
...  

Objective Long-term outcome data in adults with childhood-onset SLE are limited. Here, we report the effects of cSLE on education, vocation and employment in a large cohort of adults with cSLE. Methods Patients were seen for a single study visit containing a structured history and physical examination. Medical records were retrieved to supplement information obtained during the study visit. Education and employment status were assessed by questionnaires. Health-related quality of life (HRQOL) was measured with the SF36. Results 106 cSLE patients (93% female, 73% white), with a median disease duration of 20 years, completed the visit and questionnaires. Almost all patients stated that cSLE had influenced their education, but level of completed education was similar to the general Dutch population. Half of the patients had adjusted their vocational choice due to the disease. Still, 44% of patients who had finished education did not have a paid job. Of the employed patients, 61% worked part-time. Disease damage was equally prevalent in patients with and without paid employment. A high percentage of patients (51%) were declared work disabled, which was related to damage. Patients who did not have paid employment were often work disabled. Both had a negative influence on HRQOL. Conclusion The effect of cSLE on academic achievements and employment is substantial, despite adjusting educational and vocational choices to the disease. Ongoing support, not only to help patients find suitable education and vocation, but also to offer guidance regarding potential adjustments during their career, is necessary to optimise participation in the community.

2020 ◽  
Vol 128 (10) ◽  
pp. 687-692 ◽  
Author(s):  
Joachim Feldkamp ◽  
F. Grünwald ◽  
Markus Luster ◽  
Kerstin Lorenz ◽  
Christian Vorländer ◽  
...  

AbstractThyroid nodules and cysts are frequently diagnosed in Germany with a prevalence of about 20% in young adults reaching up to 70% in older adults. Surgery is the standard treatment of symptomatic nodules, nodules with suspicion of malignancy and thyroid cancer. Radioiodine treatment is applied for autonomously functioning nodules. During the last years new non-surgical and non-radioiodine techniques have been introduced to treat thyroid nodules. These techniques include ethanol/polidocanol treatment, radiofrequency, microwave, and laser ablation, and high frequency ultrasound ablation. A significant reduction in nodule size could be documented for these techniques in several studies, but long-term outcome data are missing. Until now, there is no general consensus regarding the appropriate indications for these methods. For this reason, the Thyroid Section (German Society for Endocrinology), the Thyroid Working Committee (German Society for Nuclear Medicine), and the German Association of Endocrine Surgeons (CAEK) for the German Society of General and Visceral Surgery (DGAV) reviewed the respective literature, discussed the pro and cons and developed a consensus statement and recommendation to help physicians and patients in their decision making.


2008 ◽  
Vol 123 (3) ◽  
pp. 298-302 ◽  
Author(s):  
R J Sim ◽  
A H Jardine ◽  
E J Beckenham

AbstractA number of authors have suggested that surgery for suspected perilymph fistula is effective in preventing deterioration of hearing and in improving hearing in some cases in the short term. We present long-term hearing outcome data from 35 children who underwent exploration for presumed perilymph fistula at The Children's Hospital, Sydney, Australia, between 1985 and 1992.Methods:The pre-operative audiological data (mean of 500, 1000, 2000 and 4000 Hz results) were compared with the most recently available data (range two to 15 years) and the six-month post-operative data.Results:The short-term results showed no significant change in hearing at six months, with a subsequent, statistically significant progression of hearing loss in both operated and non-operated ears (Wilcoxon signed rank test: operated ear, p < 0.017; non-operated ear, p < 0.009).Conclusion:In this case series, exploratory surgery for correction of suspected perilymph fistula did not prevent progression of long-term hearing loss.


2016 ◽  
Vol 27 (06) ◽  
pp. 495-502 ◽  
Author(s):  
Clare Skerritt ◽  
Alejandra Vilanova Sánchez ◽  
Victoria Lane ◽  
Richard Wood ◽  
Geri Hewitt ◽  
...  

Background The authors of this article became aware of significant differences in the management of two females with a rectovestibular fistula and associated vaginal agenesis. In one patient, a sigmoid colovaginoplasty was performed at the time of the posterior sagittal anorectoplasty (PSARP), and the other underwent repair of the rectovestibular fistula with a primary PSARP, but the surgeons elected to delay the timing of vaginal reconstruction. We decided to review the literature, to establish if recommendations could be made to optimize the management of these children based on current evidence. Methods A literature review was conducted to determine the management and long-term outcomes in patients with an anorectal malformation and associated vaginal atresia. Specific gynecological outcomes assessed were menstrual egress and adequacy of the vaginal replacement for penile–vaginal intercourse. Results Eighty-eight cases were included in the review. Age at diagnosis had a bimodal distribution: 0 to 5 years, 56%; >10 years, 37%. Vaginal atresia was recognized before the operation in 45 patients. Types of vaginal atresia encountered were: (a) distal vaginal atresia (n = 17), (b) vaginal agenesis with absent Mullerian development (n = 47), (c) vaginal agenesis with variable Mullerian development (n = 17), and (d) cervico-vaginal agenesis (n = 7). Types of vaginal replacement used were sigmoid colovaginoplasty (n = 26), distal rectal fistula as neovagina (n = 30), terminal ileum (n = 5), vaginal pull-through (n = 9), and others/unknown (n = 8). Two patients followed a perineal dilatation program and nine patients await reconstruction. Median follow-up was 18 months (6 weeks to 31 years). Long-term menstrual outcomes were reported in 18 (21%) patients. Sexual function was reported in 10 (11%) patients. Three pregnancies were reported but none resulted in live births. Conclusion Vaginal atresia is often missed in association with ARMs. Management should be in collaboration with pediatric gynecologists. Due to a lack of long-term outcome data, no definite conclusion can be drawn for the best technique, tissue, or timing of vaginal replacement. The opportunity to perform vaginal replacement in conjunction with the rectal repair may be worth considering because of a shallower pelvis, nonscarred tissue planes, and the excellent surgical exposure.


Cephalalgia ◽  
2017 ◽  
Vol 38 (6) ◽  
pp. 1159-1166 ◽  
Author(s):  
Matti Sillanpää ◽  
Maiju M Saarinen

Purpose To examine prevalence, course, and long-term outcome of childhood migraine and other headaches. Method Using questionnaires, 1185 children were followed for recurrent headaches at ages seven, 14 and 32 years, respectively. Results At age seven years, 4.0% of the 1185 children (girls 3.7%, boys 4.3%) had migraine and 24% (25%/23%) had nonmigrainous headache. In adulthood, 16% (22%/8%) had migraine and 60% (64%/54%) nonmigrainous headache. Childhood migraine persisted into adulthood in 65% of females and 21% of males, and nonmigrainous headache in 62% and 59%, respectively. After childhood, 17% of females and 7% of males started to have episodes of migraine. No recurrent headache during the follow-up was reported by 11% (6%/16%). In a multivariate analysis, compared with no childhood headache, childhood migraine increased the risk of adulthood migraine by 3.36-fold (95% CI 1.94–5.82) and that of nonmigrainous headache by 1.72-fold (1.14–2.60). Discussion and conclusions Headaches are generally as common in preschool girls as boys. From early school years, headaches steadily increase up to young adulthood, but among boys the prevalence levels off after adolescence. About two thirds of children experienced changes in their headache status during a 25-year follow-up. Any kind of recurrent headache at school entry predicts an increased risk of headache in young adulthood. Special attention should be paid to girls and particularly those girls who have recurrent headache when they start school.


2018 ◽  
Vol 35 (1) ◽  
pp. 37-42 ◽  
Author(s):  
Prasanth Ganesan ◽  
Trivadi S. Ganesan ◽  
Venkatraman Radhakrishnan ◽  
Tenali Gnana Sagar ◽  
Krishnarathinam Kannan ◽  
...  

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Pier Luca Ceccarelli ◽  
Laura Lucaccioni ◽  
Francesca Poluzzi ◽  
Anastasia Bianchini ◽  
Diego Biondini ◽  
...  

Abstract Background Hypospadias is one of the most common congenital abnormalities in male newborn. There is no universal approach to hypospadias surgical repair, with more than 300 corrective procedures described in current literature. The reoperation rate within 6–12 months of the initial surgery is most frequently used as an outcome measure. These short-term outcomes may not reflect those encountered in adolescence and adult life. This study aims to identify the long-term cosmetic, functional and psychosexual outcomes. Methods Medical records of boys who had undergone surgical repair of hypospadias by a single surgical team led by the same surgeon at a single centre between August 2001 and December 2017 were reviewed. Families were contacted by telephone and invited to participate. Surgical outcome was assessed by combination of clinical examination, a life-related interview and 3 validated questionnaires (the Penile Perception Score-PPS, the Hypospadias Objective Score Evaluation-HOSE, the International Index of Erectile Function-5-IIEF5). Outcomes were compared according to age, severity of hypospadias, and respondent (child, parent and surgeon). Results 187 children and their families agreed to participate in the study. 46 patients (24.6%) presented at least one complication after the repair, with a median elapsed time of 11.5 months (6.5–22.5). Longitudinal differences in surgical corrective procedures (p < 0.01), clinical approach (p < 0.01), hospitalisation after surgery (p < 0.01) were found. Cosmetic data from the PPS were similar among children and parents, with no significant differences in child’s age or the type of hypospadias: 83% of children and 87% of parents were satisfied with the cosmetic result. A significant difference in functional outcome related to the type of hypospadias was reflected responses to HOSE amongst all groups of respondents: children (p < 0.001), parents (p=0.02) and surgeon (p < 0.01). The child’s HOSE total score was consistently lower than the surgeon (p < 0.01). The HOSE satisfaction rate on functional outcome was 89% for child and 92% for parent respondents. Conclusion Surgeons and clinicians should be cognizant of the long-term outcomes following hypospadias surgical repair and this should be reflected in a demand for a standardised approach to repair and follow-up.


Circulation ◽  
2015 ◽  
Vol 132 (suppl_3) ◽  
Author(s):  
S. Ram Kumar ◽  
Nathan Noh ◽  
Novell Castillo ◽  
Brian Fagan ◽  
Grace Kung ◽  
...  

Background: We have previously shown that neonates in profound cardiogenic shock due to severe Ebstein’s anomaly can be successfully salvaged with fenestrated right ventricular (RV) exclusion and systemic to pulmonary shunt (modified Starnes procedure). The long-term outcome of single ventricle management in these patients is not known. Methods: We retrospectively reviewed the records of 26 patients who underwent neonatal Starnes procedure between 1989 and 2011. Patient demographics, clinical variables and outcome data were collected. Data is presented as mean ± standard errors or median (interquartile ranges). Results: 26 patients (12, 46% boys) underwent Starnes procedure at 7 (5-9) days of life. All were intubated and on prostacyclin infusion, 24 (92%) were inotrope-dependent and 23 (88%) had no antegrade flow from the RV. Two patients had had prior intervention (one tricuspid annuloplasty and one shunt alone). Three patients underwent non-fenestrated RV exclusion, two (67%) of whom died. Of the remaining 23, 3 (13%) died during the same hospitalization. The 21 neonatal survivors have been followed for 7 (6-8) years. One patient died after Glenn. The remaining 20 have successfully undergone Fontan completion with an indexed pulmonary resistance of 1.8 (1.2-2.3) W/m2 and mean pulmonary pressure of 12 (9-18) mm Hg. At last follow-up, all patients have normal left ventricular function, and all but one patient are in NYHA Class I symptoms. Two patients have required pacemaker implantation, while the rest are in sinus rhythm. Survival at 1, 5 and 10 years are 81±4%, 77±3% and 77±3%, respectively. Conclusion: Long-term single ventricle outcomes amongst neonatal survivors of modified Starnes procedure are excellent. There is reliable remodeling of the excluded RV and excellent function of the left ventricle.


Author(s):  
Carol B. Peterson

Dr. Cubic’s case presentation eloquently highlights the numerous challenges of using evidence-based interventions in the treatment of eating disorders. As Dr. Cubic emphasizes in her case description, among the different types of eating disorders, anorexia nervosa (AN) (and especially AN accompanied by bulimic symptoms) is particularly difficult to treat effectively, and long-term outcome data indicate high levels of treatment nonresponse, relapse, co-occurring psychiatric symptoms, medical complications, and mortality (...


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