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1.
Am J Med Genet A ; 194(4): e63511, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38126162

ABSTRACT

Some children exposed at conception to the antiepileptic drugs (AEDs) phenytoin (PHT), phenobarbital (PB), and carbamazepine (CBZ) have changes in their midface and fingers. It has been suggested that the anticonvulsant-exposed child with these subtle changes in facial features (the "anticonvulsant face") has a greater likelihood of having deficits in IQ in comparison with children exposed to the same anticonvulsants who do not have these features. 115 AED-exposed children (40, PHT; 34, PB; and 41, CBZ) between 6.5 and 16 years of age and 111 unexposed children matched by sex, race, and year in school were evaluated. The evaluations were (WISC-III), physical examination with measurements of facial features and digits and photographs. The AED-exposed children had cephalometric radiographs, but not the unexposed. Each parent had a similar examination of face and hands plus tests of intelligence. These AED-exposed children showed an increased frequency of a short nose and anteverted nares, features of the "anticonvulsant face." Lateral skull radiographs showed a decrease in the angle between the anterior cranial base and nasal bone, which produces anteverted nares. Mean IQs were significantly lower on one or more IQ measures for the children with these facial features. Shortening of the distal phalanges and small fingernails correlated with the presence of a short nose in that child. The findings in 115 children exposed at conception to either phenytoin, phenobarbital, or carbamazepine, as monotherapy, confirmed the hypothesis that those with a short nose and anteverted nares had a lower IQ than exposed children without those features.


Subject(s)
Epilepsy , Musculoskeletal Abnormalities , Pregnancy , Child , Female , Humans , Aged, 80 and over , Anticonvulsants/adverse effects , Phenytoin/adverse effects , Epilepsy/drug therapy , Phenobarbital/therapeutic use , Carbamazepine/adverse effects , Valproic Acid/therapeutic use
2.
Article in English | MEDLINE | ID: mdl-37405888

ABSTRACT

Increasingly, visualization practitioners are working with, using, and studying private and sensitive data. There can be many stakeholders interested in the resulting analyses-but widespread sharing of the data can cause harm to individuals, companies, and organizations. Practitioners are increasingly turning to differential privacy to enable public data sharing with a guaranteed amount of privacy. Differential privacy algorithms do this by aggregating data statistics with noise, and this now-private data can be released visually with differentially private scatterplots. While the private visual output is affected by the algorithm choice, privacy level, bin number, data distribution, and user task, there is little guidance on how to choose and balance the effect of these parameters. To address this gap, we had experts examine 1,200 differentially private scatterplots created with a variety of parameter choices and tested their ability to see aggregate patterns in the private output (i.e. the visual utility of the chart). We synthesized these results to provide easy-to-use guidance for visualization practitioners releasing private data through scatterplots. Our findings also provide a ground truth for visual utility, which we use to benchmark automated utility metrics from various fields. We demonstrate how multi-scale structural similarity (MS-SSIM), the metric most strongly correlated with our study's utility results, can be used to optimize parameter selection. A free copy of this paper along with all supplemental materials is available at https://osf.io/wej4s/.

3.
PLoS One ; 18(1): e0279225, 2023.
Article in English | MEDLINE | ID: mdl-36630354

ABSTRACT

The murder of George Floyd by police in May 2020 sparked international protests and brought unparalleled levels of attention to the Black Lives Matter movement. As we show, his death set record levels of activity and amplification on Twitter, prompted the saddest day in the platform's history, and caused his name to appear among the ten most frequently used phrases in a day, where he is the only individual to have ever received that level of attention who was not known to the public earlier that same week. Importantly, we find that the Black Lives Matter movement's rhetorical strategy to connect and repeat the names of past Black victims of police violence-foregrounding racial injustice as an ongoing pattern rather than a singular event-was exceptionally effective following George Floyd's death: attention given to him extended to over 185 prior Black victims, more than other past moments in the movement's history. We contextualize this rising tide of attention among 12 years of racial justice activism on Twitter, demonstrating how activists and allies have used attention and amplification as a recurring tactic to lift and memorialize the names of Black victims of police violence. Our results show how the Black Lives Matter movement uses social media to center past instances of police violence at an unprecedented scale and speed, while still advancing the racial justice movement's longstanding goal to "say their names."


Subject(s)
Black or African American , Police , Humans , Male , Racial Groups , Violence
4.
JMIR Ment Health ; 9(3): e33685, 2022 Mar 30.
Article in English | MEDLINE | ID: mdl-35353049

ABSTRACT

BACKGROUND: Mental health challenges are thought to affect approximately 10% of the global population each year, with many of those affected going untreated because of the stigma and limited access to services. As social media lowers the barrier for joining difficult conversations and finding supportive groups, Twitter is an open source of language data describing the changing experience of a stigmatized group. OBJECTIVE: By measuring changes in the conversation around mental health on Twitter, we aim to quantify the hypothesized increase in discussions and awareness of the topic as well as the corresponding reduction in stigma around mental health. METHODS: We explored trends in words and phrases related to mental health through a collection of 1-, 2-, and 3-grams parsed from a data stream of approximately 10% of all English tweets from 2010 to 2021. We examined temporal dynamics of mental health language and measured levels of positivity of the messages. Finally, we used the ratio of original tweets to retweets to quantify the fraction of appearances of mental health language that was due to social amplification. RESULTS: We found that the popularity of the phrase mental health increased by nearly two orders of magnitude between 2012 and 2018. We observed that mentions of mental health spiked annually and reliably because of mental health awareness campaigns as well as unpredictably in response to mass shootings, celebrities dying by suicide, and popular fictional television stories portraying suicide. We found that the level of positivity of messages containing mental health, while stable through the growth period, has declined recently. Finally, we observed that since 2015, mentions of mental health have become increasingly due to retweets, suggesting that the stigma associated with the discussion of mental health on Twitter has diminished with time. CONCLUSIONS: These results provide useful texture regarding the growing conversation around mental health on Twitter and suggest that more awareness and acceptance has been brought to the topic compared with past years.

5.
Epilepsy Behav ; 127: 108533, 2022 02.
Article in English | MEDLINE | ID: mdl-35042158

ABSTRACT

OBJECTIVE: Usage during pregnancy of the antiseizure medication (ASM), phenobarbital (PB), carbamazepine (CBZ), and phenytoin (PHT), has been associated with adverse pregnancy outcomes. While morphological effects on offspring are well-documented, inconsistent findings have been reported on neuropsychological development, possibly due to differences in attention to maternal demographics, and other design characteristics. Herein, we report the results of a carefully designed protocol used to examine the effects of gestational monotherapy with PB, CBZ, or PHT upon children's general mental abilities, when compared to age- and gender- matched children born to unexposed women of similar age, education, and socioeconomic status. METHODS: For each ASM, we selected qualifying cases from children born to PB, CBZ, or PHT monotherapy-exposed and unexposed women. Following the application of inclusion, exclusion, and matching criteria, our sample included 34 PB-exposed, 40 PHT-exposed, and 41 CBZ-exposed children along with matched unexposed children for each drug group. Criteria were applied through examination of maternal medical and educational histories, parental socioeconomic characteristics, and child's age and gender. Each child's physical and neuropsychological characteristics were examined, using standardized protocols. We report on the cognitive performance of the children as assessed by the Wechsler Intelligence Scale for Children - III (WISC-III), the leading measure of mental ability in the U.S. RESULTS: An overall mixed model ANOVA of the adjusted performance of the children across all groups controlling for maternal IQ revealed significant effects on verbal IQ, but not full-scale IQ or performance IQ. In the individual drug and unexposed group comparisons, only reduced verbal and full-scale IQ scores in PB-exposed versus matched unexposed children were found. Comparisons between drug groups revealed a significant reduction in verbal IQ and full-scale IQ in PB-exposed versus PHT-exposed children, but not in other drug-drug comparisons. SIGNIFICANCE: These results demonstrate effects on children's mental ability due to prenatal PB exposure, such that analyses adjusted for maternal IQ scores, revealed reduced verbal mental abilities and reduced full-scale IQ scores when scores in exposed children were compared to scores from children of the same age and sex born to demographically similar, healthy unexposed women. When comparisons were made between drug groups, children exposed prenatally to PB performed significantly worse than prenatally PHT-exposed children, but CBZ-exposed children's scores were not significantly different from those of PB or PHT-exposed groups. In light of shared effects on structural teratogenicity, these findings suggest that use of PB monotherapy for the management of seizures during pregnancy may be associated with increased risk in comparison to PHT when neurobehavioral functioning is considered, and that only PB-exposed children have reduced performance compared to matched controls. Attention to these effects is critical in the developing world where use of these older medications remains predominant, and prudent choices can be made to reduce impact on cognitive development.


Subject(s)
Anticonvulsants , Phenytoin , Anticonvulsants/adverse effects , Carbamazepine/adverse effects , Child , Female , Humans , Intelligence Tests , Phenobarbital/adverse effects , Phenytoin/adverse effects , Pregnancy
6.
PLoS One ; 16(12): e0260592, 2021.
Article in English | MEDLINE | ID: mdl-34879105

ABSTRACT

Measuring the specific kind, temporal ordering, diversity, and turnover rate of stories surrounding any given subject is essential to developing a complete reckoning of that subject's historical impact. Here, we use Twitter as a distributed news and opinion aggregation source to identify and track the dynamics of the dominant day-scale stories around Donald Trump, the 45th President of the United States. Working with a data set comprising around 20 billion 1-grams, we first compare each day's 1-gram and 2-gram usage frequencies to those of a year before, to create day- and week-scale timelines for Trump stories for 2016-2021. We measure Trump's narrative control, the extent to which stories have been about Trump or put forward by Trump. We then quantify story turbulence and collective chronopathy-the rate at which a population's stories for a subject seem to change over time. We show that 2017 was the most turbulent overall year for Trump. In 2020, story generation slowed dramatically during the first two major waves of the COVID-19 pandemic, with rapid turnover returning first with the Black Lives Matter protests following George Floyd's murder and then later by events leading up to and following the 2020 US presidential election, including the storming of the US Capitol six days into 2021. Trump story turnover for 2 months during the COVID-19 pandemic was on par with that of 3 days in September 2017. Our methods may be applied to any well-discussed phenomenon, and have potential to enable the computational aspects of journalism, history, and biography.


Subject(s)
Politics , COVID-19/epidemiology , COVID-19/pathology , COVID-19/virology , Humans , SARS-CoV-2/isolation & purification , United States
7.
Sci Adv ; 7(29)2021 Jul.
Article in English | MEDLINE | ID: mdl-34272243

ABSTRACT

In real time, Twitter strongly imprints world events, popular culture, and the day-to-day, recording an ever-growing compendium of language change. Vitally, and absent from many standard corpora such as books and news archives, Twitter also encodes popularity and spreading through retweets. Here, we describe Storywrangler, an ongoing curation of over 100 billion tweets containing 1 trillion 1-grams from 2008 to 2021. For each day, we break tweets into 1-, 2-, and 3-grams across 100+ languages, generating frequencies for words, hashtags, handles, numerals, symbols, and emojis. We make the dataset available through an interactive time series viewer and as downloadable time series and daily distributions. Although Storywrangler leverages Twitter data, our method of tracking dynamic changes in n-grams can be extended to any temporally evolving corpus. Illustrating the instrument's potential, we present example use cases including social amplification, the sociotechnical dynamics of famous individuals, box office success, and social unrest.

8.
PLoS One ; 16(5): e0251762, 2021.
Article in English | MEDLINE | ID: mdl-34038454

ABSTRACT

We study collective attention paid towards hurricanes through the lens of n-grams on Twitter, a social media platform with global reach. Using hurricane name mentions as a proxy for awareness, we find that the exogenous temporal dynamics are remarkably similar across storms, but that overall collective attention varies widely even among storms causing comparable deaths and damage. We construct 'hurricane attention maps' and observe that hurricanes causing deaths on (or economic damage to) the continental United States generate substantially more attention in English language tweets than those that do not. We find that a hurricane's Saffir-Simpson wind scale category assignment is strongly associated with the amount of attention it receives. Higher category storms receive higher proportional increases of attention per proportional increases in number of deaths or dollars of damage, than lower category storms. The most damaging and deadly storms of the 2010s, Hurricanes Harvey and Maria, generated the most attention and were remembered the longest, respectively. On average, a category 5 storm receives 4.6 times more attention than a category 1 storm causing the same number of deaths and economic damage.


Subject(s)
Cyclonic Storms/statistics & numerical data , Information Dissemination/methods , Natural Disasters , Social Media/statistics & numerical data , Humans , United States
9.
EPJ Data Sci ; 10(1): 15, 2021.
Article in English | MEDLINE | ID: mdl-33816048

ABSTRACT

Working from a dataset of 118 billion messages running from the start of 2009 to the end of 2019, we identify and explore the relative daily use of over 150 languages on Twitter. We find that eight languages comprise 80% of all tweets, with English, Japanese, Spanish, Arabic, and Portuguese being the most dominant. To quantify social spreading in each language over time, we compute the 'contagion ratio': The balance of retweets to organic messages. We find that for the most common languages on Twitter there is a growing tendency, though not universal, to retweet rather than share new content. By the end of 2019, the contagion ratios for half of the top 30 languages, including English and Spanish, had reached above 1-the naive contagion threshold. In 2019, the top 5 languages with the highest average daily ratios were, in order, Thai (7.3), Hindi, Tamil, Urdu, and Catalan, while the bottom 5 were Russian, Swedish, Esperanto, Cebuano, and Finnish (0.26). Further, we show that over time, the contagion ratios for most common languages are growing more strongly than those of rare languages.

10.
PLoS One ; 16(1): e0244476, 2021.
Article in English | MEDLINE | ID: mdl-33406101

ABSTRACT

In confronting the global spread of the coronavirus disease COVID-19 pandemic we must have coordinated medical, operational, and political responses. In all efforts, data is crucial. Fundamentally, and in the possible absence of a vaccine for 12 to 18 months, we need universal, well-documented testing for both the presence of the disease as well as confirmed recovery through serological tests for antibodies, and we need to track major socioeconomic indices. But we also need auxiliary data of all kinds, including data related to how populations are talking about the unfolding pandemic through news and stories. To in part help on the social media side, we curate a set of 2000 day-scale time series of 1- and 2-grams across 24 languages on Twitter that are most 'important' for April 2020 with respect to April 2019. We determine importance through our allotaxonometric instrument, rank-turbulence divergence. We make some basic observations about some of the time series, including a comparison to numbers of confirmed deaths due to COVID-19 over time. We broadly observe across all languages a peak for the language-specific word for 'virus' in January 2020 followed by a decline through February and then a surge through March and April. The world's collective attention dropped away while the virus spread out from China. We host the time series on Gitlab, updating them on a daily basis while relevant. Our main intent is for other researchers to use these time series to enhance whatever analyses that may be of use during the pandemic as well as for retrospective investigations.


Subject(s)
COVID-19/psychology , Pandemics/statistics & numerical data , Social Media/trends , Attention , COVID-19/etiology , Coronavirus Infections/etiology , Coronavirus Infections/psychology , Humans , Language , Retrospective Studies , SARS-CoV-2/pathogenicity
11.
Birth Defects Res ; 109(14): 1134-1143, 2017 Aug 15.
Article in English | MEDLINE | ID: mdl-28635121

ABSTRACT

BACKGROUND: Valproic acid (VPA) is the most teratogenic anticonvulsant drug in clinical use today. Children exposed prenatally to VPA have previously been shown to have dysmorphic craniofacial features, identified subjectively but not by anthropometric methods. Exposure to VPA has also been associated with an increased frequency of autism spectrum disorder (ASD). An increased cephalic index (the ratio of the cranial lateral width to the cranial anterior-posterior length) has been observed in children with ASD. METHODS: Forty-seven children exposed to VPA during the first trimester of pregnancy were evaluated for dysmorphic facial features, identified subjectively and by measurements. Each VPA-exposed child was evaluated for ASD using the Social Communication Questionnaire, Autism Diagnostic Interview-Revised, and Autism Diagnostic Observation Schedule. The same physical examination was carried out on an unexposed comparison group of 126 children. The unexposed children also had testing for cognitive performance by the Wechsler Intelligence Scale for Children. RESULTS: Several dysmorphic craniofacial features, including telecanthus, wide philtrum, and increased length of the upper lip were identified subjectively. Anthropometric measurements confirmed the increased intercanthal distance and documented additional findings, including an increased cephalic index and decreased head circumference/height index. There were no differences between the craniofacial features of VPA-exposed children with and without ASD. CONCLUSION: An increased frequency of dysmorphic craniofacial features was identified in children exposed to VPA during the first trimester of pregnancy. The most consistent finding was a larger cephalic index, which indicates a disproportion of increased width of the skull relative to the shortened anterior-posterior length. Birth Defects Research 109:1134-1143, 2017. © 2017 Wiley Periodicals, Inc.


Subject(s)
Autistic Disorder/etiology , Valproic Acid/adverse effects , Abnormalities, Drug-Induced , Adolescent , Adult , Anticonvulsants/adverse effects , Anticonvulsants/toxicity , Autism Spectrum Disorder/etiology , Child , Child, Preschool , Craniofacial Abnormalities/chemically induced , Craniofacial Abnormalities/etiology , Female , Humans , Male , Pregnancy , Pregnancy Trimester, First , Prenatal Exposure Delayed Effects , Teratogens/toxicity , Valproic Acid/toxicity
12.
Article in English | MEDLINE | ID: mdl-28554999

ABSTRACT

A birth cohort was begun to investigate the levels and sources of pesticide exposure in pregnant women living in Thailand, and to examine the effects of pesticide exposure on infant neurodevelopment at five months of age. Subjects were interviewed using questionnaires regarding their demographic characteristics, educational background, and work and home activities related to pesticide exposures. Spot urine samples were collected at 28 weeks gestation and analyzed by gas chromatography-mass spectrometry to determine maternal metabolite levels of organophosphate pesticides including dimethyl phosphate (DMP); total DEP (diethyl phosphate (DEP), diethyl thiophosphate (DETP), and diethyl dithiophosphate (DEDTP), and total DAP (the sum of all metabolite levels). At five months of age, infant development was evaluated using the Bayley Scales of Infant and Toddler Development-III (Bayley-III). Higher total DEP and total DAP metabolite levels from the mother at 28 weeks' gestation were significantly associated with reduced motor composite scores on the Bayley-III at five months of age. The total DEP levels were also significantly associated with reduced cognitive composite scores. Prenatal concentrations of maternal urinary metabolites were associated with infant cognitive and motor development. The results of several studies now suggest the need for public health intervention to reduce prenatal pesticide exposures from both agricultural and domestic use.


Subject(s)
Child Development/drug effects , Cognition/drug effects , Maternal Exposure/adverse effects , Organophosphorus Compounds/toxicity , Pesticides/toxicity , Prenatal Exposure Delayed Effects , Adult , Environmental Monitoring , Female , Gas Chromatography-Mass Spectrometry , Humans , Infant , Male , Organophosphorus Compounds/urine , Pesticides/urine , Pregnancy , Thailand , Young Adult
13.
Neurotoxicol Teratol ; 54: 5-14, 2016.
Article in English | MEDLINE | ID: mdl-26791321

ABSTRACT

OBJECTIVES: To evaluate adaptive behavior outcomes of children prenatally exposed to lamotrigine, valproate, or carbamazepine, and to determine if these outcomes were dose-dependent. METHODS: Data were collected from women enrolled in the North American Anti epileptic Drug (AED) Pregnancy Registry who had taken lamotrigine, valproate, or carbamazepine monotherapies throughout pregnancy to suppress seizures. The adaptive behavior of 252 exposed children (including 104 lamotrigine-exposed, 97 carbamazepine-exposed, and 51 valproate-exposed), ages 3- to 6-years-old, was measured using the Vineland-II Adaptive Behavior Scales, administered to each mother by telephone. Mean Adaptive Behavior Composite (ABC), domain standard scores for communication, daily living, socialization and motor skills, and adaptive levels were analyzed and correlated with first trimester drug dose. RESULTS: After adjusting for maternal age, education, folate use, cigarette and alcohol exposure, gestational age, and birth weight by propensity score analysis, the mean ABC score for valproate-exposed children was 95.6 (95% CI [91, 101]), versus 100.8 (95% CI [98, 103]) and 103.5 (95% CI [101, 106]) for carbamazepine- and lamotrigine-exposed children, respectively (ANOVA; p=0.017). Significant differences were observed among the three drug groups in the ABC (p=0.017), socialization (p=0.026), and motor (p=0.018) domains, with a trend toward significance in the communication domain (p=0.053). Valproate-exposed children scored lowest and lamotrigine-exposed children scored highest in every category. Valproate-exposed children were most likely to perform at a low or moderately low adaptive level in each category. Higher valproate dose was associated with significantly lower ABC (p=0.020), socialization (p=0.009), and motor (p=0.041) scores before adjusting for confounders. After adjusting for the above variables, increasing VPA dose was associated with decreasing Vineland scores in all domains, but the relationships were not statistically significant. No dose effect was observed for carbamazepine or lamotrigine. CONCLUSIONS: Unlike carbamazepine and lamotrigine, prenatal valproate exposure was associated with adaptive behavior impairments with specific deficits in socialization and motor function, along with a relative weakness in communication. Increasing valproate dose was associated with a decline in adaptive functioning. This finding of a linear dose-dependent teratogenic effect suggests that valproate should be avoided at any dose during pregnancy. However, some women with epilepsy controlled only by valproate will decide, in consultation with their provider, that the benefits of continuing valproate during pregnancy outweigh the fetal risks. Faced with difficult choices, clinicians should be supportive as these patients consider their options.


Subject(s)
Anticonvulsants/adverse effects , Developmental Disabilities/etiology , General Adaptation Syndrome/etiology , Pregnancy Complications/chemically induced , Prenatal Exposure Delayed Effects/physiopathology , Prenatal Exposure Delayed Effects/psychology , Analysis of Variance , Carbamazepine , Child , Child, Preschool , Epilepsy/drug therapy , Female , Humans , Lamotrigine , Male , Pregnancy , Prenatal Exposure Delayed Effects/chemically induced , Triazines , Valproic Acid
14.
Br J Nurs ; 24(17): S14, S16-8, 2015.
Article in English | MEDLINE | ID: mdl-26419813

ABSTRACT

This article describes the initial development and subsequent evolution of a simple referral assessment tool for stoma care. The first author's personal experience identified that there was widespread inconsistency in perceptions of local multidisciplinary teams as to when it was appropriate to refer to specific specialist nursing teams. This resulted in both inappropriate and delayed referrals. A 'Think Specialist Nurse' initiative was developed across the author's trust, building on the traffic light template from the 'ThinkGlucose' tool, to facilitate referrals to clinical nurse specialists. The stoma-care specific tool, 'Think Stoma Nurse', has subsequently evolved beyond its initial audience, and has been adapted into materials aimed at patients and carers.


Subject(s)
Nurse Clinicians , Nurse's Role , Referral and Consultation , Surgical Stomas , Adult , Humans , Nursing Assessment , Quality Improvement
15.
Neurohospitalist ; 5(4): 197-204, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26425247

ABSTRACT

BACKGROUND AND PURPOSE: Delays in patient hospital discharge affect care value through costs of prolonged length of stay and barriers to patient flow within the hospital. We sought to facilitate early-in-day discharges (EIDDs) without extending length of stay for inpatients with multiple sclerosis admitted for acute exacerbations and treated with intravenous (IV) methylprednisolone. METHODS: We developed a standardized admission order set, a provider checklist, and a patient checklist to better coordinate in-hospital care and discharge planning for patients with multiple sclerosis admitted for IV methylprednisolone treatment. The order set allowed providers to enter an accelerated dosing schedule of methylprednisolone, as appropriate, to ensure administration of the final dose of methylprednisolone in the morning on the anticipated day of discharge. We compared a prospective intervention cohort to a retrospective, preintervention baseline cohort. RESULTS: At baseline (N = 25), 12.0% of patients were EIDD compared to 40.7% of intervention patients (N = 27; P = .03). In all, 85.2% of intervention patients compared to 64.0% of baseline patients were discharged on the same day as last methylprednisolone treatment (P = .11). No difference was observed in median length of stay and 30-day readmission rate between groups. CONCLUSIONS: Use of a standard admission order set as well as provider and patient checklists can facilitate EIDD and hospital bed availability without compromising care quality for a select group of neurology inpatients.

16.
Sex Transm Infect ; 88(7): 517-21, 2012 Nov.
Article in English | MEDLINE | ID: mdl-22645393

ABSTRACT

OBJECTIVES: To obtain health-related quality of life valuations (ie, utilities) for human papillomavirus (HPV)-related cancer health states of vulval, vaginal, penile, anal and oropharyngeal cancers for use in modelling cost-effectiveness of prophylactic HPV vaccination. METHODS: Written case descriptions of each HPV-associated cancer describing the 'average' patient surviving after the initial cancer diagnosis and treatment were developed in consultation with oncology clinicians. A general overview, standard gamble questionnaire for each health state and a quiz was conducted in 120 participants recruited from the general population. RESULTS: In the included population sample (n=99), the average age was 43 years (range = 18-70 years) with 54% men, 44% never married/43% married, 76% education beyond year 12 and 39% employed full-time. The utility values for the five health states were 0.57 (95% CI 0.52 to 0.62) for anal cancer, 0.58 (0.53 to 0.63) for oropharyngeal cancer, 0.59 (0.54 to 0.64) for vaginal cancer, 0.65 (0.60 to 0.70) for vulval cancer and 0.79 (0.74 to 0.84) for penile cancer. Participants demonstrated a very good understanding of the symptoms, diagnosis and treatment of these cancers with a mean score of 9 (SD=1.1) on a 10-item quiz. CONCLUSIONS: This study provides utility estimates for the specific HPV-related cancers of vulval, vaginal, penile, anal and oropharyngeal cancers valued by a general population sample using standard gamble. The results demonstrate considerable quality of life impact associated with surviving these cancers that will be important to incorporate into modelling cost-effectiveness of prophylactic HPV vaccination in different populations.


Subject(s)
Anus Neoplasms/psychology , Oropharyngeal Neoplasms/psychology , Papillomavirus Infections/complications , Penile Neoplasms/psychology , Quality of Life , Vaginal Neoplasms/psychology , Vulvar Neoplasms/psychology , Adolescent , Adult , Aged , Anus Neoplasms/pathology , Anus Neoplasms/prevention & control , Anus Neoplasms/virology , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Oropharyngeal Neoplasms/pathology , Oropharyngeal Neoplasms/prevention & control , Oropharyngeal Neoplasms/virology , Papillomavirus Infections/prevention & control , Patient Acceptance of Health Care/statistics & numerical data , Penile Neoplasms/pathology , Penile Neoplasms/prevention & control , Penile Neoplasms/virology , Surveys and Questionnaires , Vaginal Neoplasms/pathology , Vaginal Neoplasms/prevention & control , Vaginal Neoplasms/virology , Vulvar Neoplasms/pathology , Vulvar Neoplasms/prevention & control , Vulvar Neoplasms/virology , Young Adult
17.
Birth Defects Res A Clin Mol Teratol ; 94(6): 486-93, 2012 Jun.
Article in English | MEDLINE | ID: mdl-22522347

ABSTRACT

Over the last several decades, federal agencies engaged in the screening of environmental or pharmaceutical agents have recognized the need to conduct research in animal models to identify agents that have classic teratogenic effects as well as effects on neural and behavioral development. Many questions typically addressed in rodent models can be further addressed using real-world, everyday human exposures. Although some postmarketing surveillance programs have been put in place to examine the influences on birth characteristics, it is now urgent that programs be launched to examine the long-term risks associated with exposure to the many medications, drugs, and environmental chemicals for which data are currently unavailable and unexplored. The California Teratogen Information Service (CTIS), established in 1983, and its corresponding Clinical Research Program represent the oldest national program directed at identifying pregnancy risk factors and exposures associated with adverse pregnancy outcome, including behavioral dysfunction. In recognition of the rising rates of developmental disorders involving compromised mental ability, in 2007, CTIS committed to the development of a more comprehensive screening program designed to detect relationships between adverse prenatal exposures and compromised human neurobehavioral development. The "CTIS Womb to Classroom Screening Program for the Detection of Agents with Adverse Effects on Neuropsychological Development" is the first program designed to identify agents not yet known to be of concern.


Subject(s)
Maternal Exposure/adverse effects , Mental Disorders/prevention & control , Prenatal Exposure Delayed Effects/prevention & control , Teratogens/analysis , Teratology/education , Animals , California , Female , Humans , Mental Disorders/etiology , Occupational Exposure/adverse effects , Pregnancy , Pregnancy Outcome , Prenatal Exposure Delayed Effects/etiology , Psychological Tests , Surveys and Questionnaires , Teratogens/toxicity , Uterus/drug effects
18.
Birth Defects Res A Clin Mol Teratol ; 88(10): 895-905, 2010 Oct.
Article in English | MEDLINE | ID: mdl-20865785

ABSTRACT

This review of the central nervous system (CNS) and behavioral teratology of the retinoids over the last 50 years is a commemorative retrospective organized by decade to show the prominent research focus within each period and the most salient findings. In the 1960s, research focused on the gross CNS malformations associated with exposure and the delineation of dose-response and stage-specific responses in rodent models. Relevant scientific events before and during the 1960s are also discussed to provide the zeitgeist in which the field of neurobehavioral teratology emerged in the 1970s. During this period, studies demonstrated that adverse effects on postnatal behavior could be produced in animals exposed to doses of vitamin A lower than those that were teratogenic or impacted growth. Work during the 1980s showed an overrepresentation of behavioral studies focused on the reliability of screening methods, while the marked effects of human exposure were illustrated in children born to women treated with isotretinoin during pregnancy. The human catastrophe invigorated research during the 1990s, a period when technological advances allowed more elegant examinations of the developing CNS, of biochemical, cellular, and molecular developmental events and regulatory actions, and of the effects of direct genetic manipulations. Likewise, research in the 1990s reflected a reinvigoration of research in neurobehavioral teratology evinced in studies that used animal models to try to better understand human vulnerability. These foci continued in the 2000-2010 period while examinations of the role of retinoids in brain development and lifelong functioning became increasingly sophisticated and broader in scope. This review of the work on retinoids also provides a lens on the more general ontogeny of the field of neurobehavioral teratology. Birth Defects Research (Part A), 2010. © 2010 Wiley-Liss, Inc.


Subject(s)
Abnormalities, Drug-Induced/embryology , Brain/abnormalities , Central Nervous System/abnormalities , Hypervitaminosis A/complications , Retinoids/adverse effects , Teratogens/toxicity , Animals , Brain/embryology , Central Nervous System/embryology , Female , History, 20th Century , History, 21st Century , Humans , Hypervitaminosis A/embryology , Hypervitaminosis A/metabolism , Isotretinoin/adverse effects , Isotretinoin/pharmacology , Male , Pregnancy , Retinoids/pharmacokinetics , Teratology/history , Tretinoin/adverse effects
19.
Bull Hist Med ; 83(3): 499-529, 2009.
Article in English | MEDLINE | ID: mdl-19801794

ABSTRACT

SUMMARY: This article explores domestic practices of hydropathy in Britain, suggesting that these formed a major contribution to the popularity of the system in the mid-nineteenth century. Domestic hydropathy was encouraged by hydropathic practitioners in their manuals and in the training they provided at their establishments. We argue that hydropathy can be seen as belonging to two interacting spheres, the hydro and the home, and was associated with a mission to encourage self-healing practices as well as commercial interests. Home treatments were advocated as a follow-up to attendance at hydros and encouraged as a low-cost option for those unable to afford such visits. Domestic hydropathy emphasized the high profile of the patient and was depicted as being especially appropriate for women, though in many households it appears to have been a common concern between husbands and wives.


Subject(s)
Complementary Therapies/history , Hydrotherapy/history , History, 19th Century , Humans , Self Care/history , United Kingdom
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