Dataset Information

Education and employment status of children and adults with thalassemia in North America.

ABSTRACT:

Background

Advances in the management of thalassemia have resulted in increased life expectancy and new challenges. We conducted the first survey of education and employment status of people with thalassemia in North America.

Procedures

A total of 633 patients (349 adults and 284 school age children) enrolled in the Thalassemia Clinical Research Network (TCRN) registry in Canada and the U.S. were included in the data analysis. Predictors considered for analysis were age, gender, race/ethnicity, site of treatment (Canada vs. United States), transfusion and chelation status, serum ferritin, and clinical complications.

Results

Seventy percent of adults were employed of which 67% reported working full-time. Sixty percent had a college degree and 14% had achieved some post-college education. Eighty-two percent of school age children were at expected grade level. In a multivariate analysis for adults, Whites (OR = 2.76, 95% CI: 1.50-5.06) were more likely to be employed compared to Asians. Higher education in adults was associated with older age (OR = 1.67, 95% CI: 1.29-2.15), female gender (OR = 2.08, 95% CI: 1.32-3.23) and absence of lung disease (OR = 14.3, 95% CI: 2.04-100). Younger children (OR = 5.7 for 10-year increments, 95% CI: 2.0-16.7) and Canadian patients (OR = 5.6, 95% CI: 1.5-20) were more likely to be at the expected education level. Neither transfusion nor chelation was associated with lower employment or educational achievement.

Conclusions

Individuals with thalassemia in North America can achieve higher education; however, full-time employment remains a problem. Transfusion and chelation do not affect employment or education status of this patient population.

SUBMITTER: Pakbaz Z

PROVIDER: S-EPMC2932798 | biostudies-literature | 2010 Oct

REPOSITORIES: biostudies-literature

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Publications

Education and employment status of children and adults with thalassemia in North America.

Pakbaz Zahra Z Treadwell Marsha M Kim Hae-Young HY Trachtenberg Felicia F Parmar Nagina N Kwiatkowski Janet L JL Cunningham Melody J MJ Martin Marie M Sweeters Nancy N Neufeld Ellis J EJ Giardina Patricia J PJ Olivieri Nancy N Yamashita Robert C RC Vichinsky Elliott E

Pediatric blood & cancer 20101001 4

<h4>Background</h4>Advances in the management of thalassemia have resulted in increased life expectancy and new challenges. We conducted the first survey of education and employment status of people with thalassemia in North America.<h4>Procedures</h4>A total of 633 patients (349 adults and 284 school age children) enrolled in the Thalassemia Clinical Research Network (TCRN) registry in Canada and the U.S. were included in the data analysis. Predictors considered for analysis were age, gender, r ...[more]

PMID: 20535817

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Project description:BackgroundAdults with autism spectrum disorders (ASD) experience challenges in participating in the labour market and struggle to achieve and maintain appropriate professional positions, possibly due to impairments of communication and social interaction. Studies have shown high rates of unemployment as well as evidence of inadequate employment. As knowledge on the participation in the German labour market is scarce, the aim of our study was to examine employment status, type of occupation and inadequate employment in a sample of clinically mostly late-diagnosed and most likely not intellectually disabled adults with ASD in Germany.MethodsWe conducted a cross-sectional-survey in clinically mostly late-diagnosed adults with ASD. Employment status, type of occupation, and the level of formal education and training were examined through a postal questionnaire. Inadequate employment regarding participants' current and longest practised occupation was assessed by transforming participants' information into skill levels of the "Classification of Occupations 2010" of the German Federal Employment Agency, and comparing these with participants' level of formal education and training.ResultsThe response rate was 43.2% (N = 185 of N = 428 potential participants). 94.6% were first-time diagnosed when being 18 years of age or older. 56.8% held a general university entrance-level qualification and 24.9% had obtained a Masters' or diploma degree as their highest vocational qualification. 94.1% had been employed at some time. Of these, 68.4% reported being currently employed, 13.5% being currently unemployed and 17.0% being retired for health reasons. Regarding the longest-practised and the current occupation, the highest proportion of participants was found in the occupational area "health and social sector, teaching and education" (22.4% and 23.3%, respectively). With respect to inadequate employment, 22.1% were found to be overeducated in relation to their longest-practised occupation and 31.3% in relation to their current occupation. This is significantly higher than the percentage of overeducation in the general population.ConclusionsDespite largely high formal qualifications, the clinically mostly late-diagnosed adults with ASD represented in our sample are disadvantaged regarding their participation in the German labour market, especially with respect to rates of unemployment, early retirement and overeducation. Employment support programs should be developed to improve employment outcomes.

Project description:BackgroundWith the advent of competency-based medical education, as well as Canadian efforts to include clinical informatics within undergraduate medical education, competency frameworks in the United States have not emphasized the skills associated with clinical informatics pertinent to the broader practice of medicine.ObjectiveBy examining the competency frameworks with which undergraduate medical education in clinical informatics has been developed in Canada and the United States, we hypothesized that there is a gap: the lack of a unified competency set and frame for clinical informatics education across North America.MethodsWe performed directional competency mapping between Canadian and American graduate clinical informatics competencies and general graduate medical education competencies. Directional competency mapping was performed between Canadian roles and American common program requirements using keyword matching at the subcompetency and enabling competency levels. In addition, for general graduate medical education competencies, the Physician Competency Reference Set developed for the Liaison Committee on Medical Education was used as a direct means of computing the ontological overlap between competency frameworks.ResultsUpon mapping Canadian roles to American competencies via both undergraduate and graduate medical education competency frameworks, the difference in focus between the 2 countries can be thematically described as a difference between the concepts of clinical and management reasoning.ConclusionsWe suggest that the development or deployment of informatics competencies in undergraduate medical education should focus on 3 items: the teaching of diagnostic reasoning, such that the information tasks that comprise both clinical and management reasoning can be discussed; precision medical education, where informatics can provide for more fine-grained evaluation; and assessment methods to support traditional pedagogical efforts (both at the bedside and beyond). Assessment using cases or structured assessments (eg, Objective Structured Clinical Examinations) would help students draw parallels between clinical informatics and fundamental clinical subjects and would better emphasize the cognitive techniques taught through informatics.

Dataset Information

Education and employment status of children and adults with thalassemia in North America.

Background

Procedures

Results

Conclusions

Publications

Education and employment status of children and adults with thalassemia in North America.

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