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AIMS/HYPOTHESIS: Psychological stress has long been considered a possible trigger of type 1 diabetes, although prospective studies examining the link between psychological stress or life events during pregnancy and the child's type 1 diabetes risk are rare. The objective of this study was to examine the association between life events during pregnancy and first-appearing islet autoantibodies (IA) in young children, conditioned by the child's type 1 diabetes-related genetic risk. METHODS: The IA status of 7317 genetically at-risk The Environmental Determinants of Diabetes in the Young (TEDDY) participants was assessed every 3 months from 3 months to 4 years, and bi-annually thereafter. Reports of major life events during pregnancy were collected at study inception when the child was 3 months of age and placed into one of six categories. Life events during pregnancy were examined for association with first-appearing insulin (IAA) (N = 222) or GAD (GADA) (N = 209) autoantibodies in the child until 6 years of age using proportional hazard models. Relative excess risk due to interaction (RERI) by the child's HLA-DR and SNP profile was estimated. RESULTS: Overall, 65% of mothers reported a life event during pregnancy; disease/injury (25%), serious interpersonal (28%) and job-related (25%) life events were most common. The association of life events during pregnancy differed between IAA and GADA as the first-appearing autoantibody. Serious interpersonal life events correlated with increased risk of GADA-first only in HLA-DR3 children with the BACH2-T allele (HR 2.28, p < 0.0001), an additive interaction (RERI 1.87, p = 0.0004). Job-related life events were also associated with increased risk of GADA-first among HLA-DR3/4 children (HR 1.53, p = 0.04) independent of serious interpersonal life events (HR 1.90, p = 0.002), an additive interaction (RERI 1.19, p = 0.004). Job-related life events correlated with reduced risk of IAA-first (HR 0.55, p = 0.004), particularly in children with the BTNL2-GG allele (HR 0.48; 95% CI 0.31, 0.76). CONCLUSIONS/INTERPRETATION: Specific life events during pregnancy are differentially related to IAA vs GADA as first-appearing IA and interact with different HLA and non-HLA genetic factors, supporting the concept of different endotypes underlying type 1 diabetes. However, the mechanisms underlying these associations remain to be discovered. Life events may be markers for other yet-to-be-identified factors important to the development of first-appearing IA.
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Autoanticuerpos/sangre , Diabetes Mellitus Tipo 1/etiología , Antígenos HLA-DR/genética , Islotes Pancreáticos/inmunología , Acontecimientos que Cambian la Vida , Madres , Polimorfismo de Nucleótido Simple , Efectos Tardíos de la Exposición Prenatal , Estrés Psicológico/complicaciones , Factores de Edad , Biomarcadores/sangre , Niño , Preescolar , Diabetes Mellitus Tipo 1/genética , Diabetes Mellitus Tipo 1/inmunología , Europa (Continente) , Femenino , Interacción Gen-Ambiente , Predisposición Genética a la Enfermedad , Antígenos HLA-DR/inmunología , Humanos , Lactante , Masculino , Madres/psicología , Embarazo , Estudios Prospectivos , Medición de Riesgo , Factores de Riesgo , Estrés Psicológico/psicología , Estados UnidosRESUMEN
BACKGROUND: Little is known about the ethical situations which physiotherapists encounter internationally. This lack of knowledge impedes the ability of the profession to prepare and support physiotherapists in all world regions in their ethical practice. The purpose of the study was to answer the following research questions: What types of ethical issues are experienced by physiotherapists internationally? How frequently are ethical issues experienced by physiotherapists internationally? Can the frequency and type of ethical issue experienced by physiotherapists be predicted by sociodemographic, educational or vocational variables? METHODS: An observational study was conducted in English using an online survey from October 2018 to May 2019. Participants were 1212 physiotherapists and physiotherapy students located internationally which represented less than 1% of estimated number of physiotherapists worldwide at that time. The survey questionnaire contained 13 items requesting demographic detail and knowledge of ethical codes and decision-making, and 46 items asking what frequency participants experienced specific ethical issues in four categories: (A) Physiotherapist and patient interaction (19 items), (B) Physiotherapist and other health professionals including other physiotherapists (10 items), (C) Physiotherapists and the system (5 items) and (D) Professional and economic ethical situations (12 items). RESULTS: The two most frequently experienced ethical issues were 'Scarce resources and time affecting quality of physiotherapy treatment' and 'Physiotherapy not accessible to all people in society who need it'. These items were experienced, on average, more often than monthly. Interprofessional practice also presented frequent ethical issues for participants. Ethical issues related to the context of 'Physiotherapists and the system' were most frequently experienced for all world regions. Working longer years in physiotherapy and learning about ethics in basic physiotherapy education was associated with participants reporting lower frequencies of ethical issues across all contexts. CONCLUSION: This study provides the first global profile of ethical issues experienced by physiotherapists. Societal and cultural systems are key influences on physiotherapists' ethical practice. Physiotherapists globally need support from their work organisations, academic institutions and professional associations, and robust ethical training, to assist them to be active moral agents in their practice.
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Fisioterapeutas , Códigos de Ética , Humanos , Encuestas y CuestionariosRESUMEN
Saliva offers a relatively noninvasive method for measuring analytes such as cortisol, holding particular promise for use in pediatric populations on a large scale if a rigorous collection protocol is feasible in diverse settings. The Environmental Determinants of Diabetes in the Young study protocol, conducted in centers in the United States, Sweden, Finland, and Germany, used salivary collection to assess cortisol level as a physiologic marker of stress. Saliva was collected using Sorbettes from subjects at 3.5, 4.5, and 5.5 years of age. Parents collected a morning sample, and staff collected pre- and post-blood draw samples. Feasibility was assessed based on protocol completion, adherence with instructions, factors affecting adherence, and sufficiency of saliva sample for cortisol determination. Collection of saliva samples in a diverse pediatric population is feasible. Establishing non-invasive and acceptable methods for collecting physiological parameters of stress will allow better exploration of determinants of health in this important population.
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Hidrocortisona/análisis , Saliva/química , Manejo de Especímenes/métodos , Biomarcadores , Preescolar , Ritmo Circadiano/fisiología , Estudios de Factibilidad , Femenino , Humanos , Masculino , Proyectos de InvestigaciónRESUMEN
OBJECTIVE: To identify predictors of later study withdrawal among participants active in The Environmental Determinants of Diabetes in the Young (TEDDY) for 1 year. METHODS: Multiple logistic regression was used to discriminate 3,042 children active in TEDDY for the first 3 years from 432 children who withdrew in Years 2 or 3. Predictor variables were tested in blocks-demographic, maternal lifestyle behaviors, stress and child illness, maternal reactions to child's increased diabetes risk, in-study behaviors-and a final best model developed. RESULTS: Few demographic factors predicted study withdrawal. Maternal lifestyle behaviors, accuracy of the mother's risk perception, and in-study behaviors were more important. Frequent child illnesses were associated with greater study retention. CONCLUSIONS: Demographic measures are insufficient predictors of later study withdrawal among those active in a study for at least 1 year; behavioral/psychological factors offer improved prediction and guidance for the development of retention strategies.
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Diabetes Mellitus Tipo 1/etiología , Estudios Epidemiológicos , Estilo de Vida , Madres/estadística & datos numéricos , Pacientes Desistentes del Tratamiento/estadística & datos numéricos , Preescolar , Diabetes Mellitus Tipo 1/genética , Femenino , Humanos , Lactante , Estudios Longitudinales , Masculino , Estudios Multicéntricos como Asunto , Factores de RiesgoRESUMEN
OBJECTIVE: To understand the association between life stress, postpartum depression (PD), maternal perception of her child's risk for type 1 diabetes (T1D) and a mother's anxiety about her child's T1D risk in mothers of genetically at risk children in The Environmental Determinants of Diabetes in the Young (TEDDY) study. METHODS: A short form of the state component (SAI) of the State-Trait Anxiety Inventory, negative life events (LE), the Edinburgh Postnatal Depression Scale (EPDS), and one question about the child's risk of developing T1D risk perceptions (RP) were given to mothers at the 6-month TEDDY clinic visit. The relationship between the four measures was modeled using multiple regressions. RESULTS: Controlling for sociodemographic factors, significant country differences in SAI, LE, EPDS, and RP emerged. LE - particularly interpersonal LE - had a strong association to maternal anxiety about the baby's risk of diabetes. Both evidence of PD and accurate risk perceptions (RPs) about the child's T1D risk were associated with increased maternal anxiety about the child's T1D risk. CONCLUSION: Heightened maternal anxiety in response to the news that a child is at increased risk for T1D is common. Mothers who have experienced recent negative LE, who experience PD and who accurately understand their child's risk may be particularly vulnerable to high levels of anxiety. The findings reported here need to be confirmed in future prospective studies.
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Ansiedad/etiología , Diabetes Mellitus Tipo 1 , Madres/psicología , Riesgo , Adulto , Depresión Posparto/complicaciones , Femenino , Predisposición Genética a la Enfermedad , Humanos , Lactante , Masculino , Estudios Prospectivos , Estrés Psicológico/complicacionesRESUMEN
BACKGROUND: There is a lack of knowledge about the ways physiotherapists around the world learn about professional code of ethics and ethical decision-making frameworks. The profession has a gap in the understanding about physiotherapists' views on factors that play a role in ethical decision-making and whether these views differ between World Physiotherapy regions. METHODS: An online survey study in English was conducted from October 2018 to October 2019. Participants included 559 physiotherapists located in 72 countries. The self-designed survey questionnaire contained 13 items asking about demographic information and means of learning about ethical codes and decision-making frameworks. A further 30 items were presented which included statements underpinned with individual, organisational, situational and societal factors influencing ethical decision-making. Participants were asked to express their level of agreement or disagreement using a 5-point-Likert-scale. RESULTS: Participants' highest rated responses endorsed that the professional role of physiotherapists is linked to social expectations of ethical behaviour and that ethical decision-making requires more skills than simply following a code of ethics. A recognisable organisational ethical culture was rated as supporting good ethical decisions. Comparing responses by World Physiotherapy regions showed significant differences in factors such as culture, religion, emotions, organisational values, significant others, consequences of professional misconduct and professional obligations. Entry level education was not perceived to provide a solid base for ethical decision-making in every World Physiotherapy region. Participants reported multiple sources for learning about a professional code of ethics and ethical decision-making frameworks. What's more, the number of sources differed between World Physiotherapy regions. CONCLUSIONS: Multiple factors play a role in physiotherapists' ethical decision-making internationally. Physiotherapists' ethical knowledge is informed by, and acquired from, several learning sources, which differ in both quality and quantity amongst World Physiotherapy regions. Easily accessible knowledge and education about professional codes of ethics and ethical decision-making can foster continuing professional development for physiotherapists. The establishment of constructive ethical cultures in workplaces can improve ethical decision-making, and should acknowledge the influence of individual, organisational, situational and societal factors. The establishment of collaborative learning environments can support knowledge translation which acknowledges practice-based methods of knowing and learning.
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INTRODUCTION: Different cultures and societal structures influence the ethical experiences of physiotherapists. OBJECTIVE: The study aimed to discover and describe contextual shades of ethical situations experienced by physiotherapists in their global practice. METHODS: This paper reports the qualitative analysis of responses to an optional open question in an internationally distributed online survey (ESPI study) with 1,212 participants from 94 countries. All responses were coded to five categories describing the data's relationship to the survey list of ethical situations. Data that described new ethical situations were analyzed thematically. RESULTS: Three hundred and fifty four individual responses to the optional survey question reported 400 ethical issues. Three hundred and seventy-eight of these issues were associated with the original survey questions. Twenty-two responses raised four new themes of ethical issues: lack of regulatory and/or accreditation policy and infrastructure, lack of recognition of the role and position of physiotherapists in healthcare, economic factors driving the conduct of practice, and political threats. DISCUSSION: Local contexts and pressures of workplaces and societies in which physiotherapists practice make it almost impossible for some practitioners to comply with codes of ethics. Physiotherapists need support and preparation to respond to local affordances and the complexity, ambiguity, and sometimes messiness of ethical situations encountered in their practice. CONCLUSION: The findings highlight the relevance of cross-cultural research in the field of physiotherapy, and the necessity of investigating and bridging the gap between professional ethics theory and practice in diverse settings.
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Fisioterapeutas , Humanos , Investigación Cualitativa , Actitud del Personal de Salud , Relaciones Profesional-Paciente , Ética ProfesionalRESUMEN
OBJECTIVE: The Environmental Determinants of Diabetes in the Young (TEDDY) study seeks to identify environmental triggers of autoimmunity and type 1 diabetes mellitus (T1DM) in children at increased human-leukocyte-antigen conferred genetic risk for this disease. The objective of this study was to identify predictors of early withdrawal from TEDDY among families with no immediate family history of T1DM. METHOD: Logistic multiple regression was used to discriminate 2994 (83%) families currently active in the TEDDY study for ≥1 yr from 763 (17%) families who withdrew in the first year. Data collected on the screening form at the time of the child's birth and from interview and questionnaire data obtained at the baby's first study visit (at ≤4.5 months of age) were used. RESULTS: Significant and independent predictors of early withdrawal included country of residence, young maternal age, no father participation, and female gender of the study participant. Mothers of children who withdrew were more likely to report smoking during pregnancy, abstaining from alcohol, and reducing their work hours or not working at all during pregnancy. Mothers who withdrew were also more likely to underestimate their child's risk for T1DM and fail to respond to multiple items on the enrollment questionnaires or interview. Among mothers with accurate risk perceptions, those experiencing high anxiety about their child's risk were more likely to be early withdrawals. CONCLUSIONS: Identifying families at high risk for study withdrawal at the time of enrollment allows for targeting these families with individually tailored plans to help maintain their participation in the study.
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Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/genética , Ambiente , Pacientes Desistentes del Tratamiento/estadística & datos numéricos , Europa (Continente)/epidemiología , Salud de la Familia , Femenino , Predisposición Genética a la Enfermedad/epidemiología , Humanos , Lactante , Modelos Logísticos , Masculino , Valor Predictivo de las Pruebas , Factores de Riesgo , Estados Unidos/epidemiologíaRESUMEN
The aim of this study was to conduct a prospective analysis of the association between negative life events (NLEs) and respiratory infections in children genetically at risk for islet autoimmunity (IA) and type 1 diabetes (T1D). Long- and short-term temporal associations between NLEs and rate of respiratory infection episodes (RIEs) in 5,618 children in The Environmental Determinants of Diabetes in the Young study for at least 1 up to 4 years were analysed. All models were adjusted for demographic, day care, season of infection, and psychosocial factors associated with the rate of child RIEs between study visits. The rate of child RIEs was 26% higher in Europe (Sweden, Finland, Germany) than in the United States (rate ratio [RR] = 1.26, p < 0.001). However, the percentage of child NLEs (odds ratio [OR] = 1.18, p < 0.001) and mother NLEs (OR = 1.83, p < 0.001) was higher in the United States compared with Europe. In both continents (Europe, RR = 1.12, p < 0.001; United States, RR = 1.07, p = 0.006), high child cumulative NLEs (>1 NLE per year since study inception) was significantly associated with an increased rate of child RIEs. This large-scale prospective study confirms observations that stress may increase the susceptibility for infections in paediatric populations and suggests at least one mechanism by which stress could increase risk for IA and T1D in genetically at risk children.
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Experiencias Adversas de la Infancia , Infecciones del Sistema Respiratorio/epidemiología , Estrés Psicológico/epidemiología , Adulto , Autoinmunidad , Preescolar , Diabetes Mellitus Tipo 1/etiología , Diabetes Mellitus Tipo 1/inmunología , Europa (Continente)/epidemiología , Femenino , Humanos , Lactante , Islotes Pancreáticos/inmunología , Estudios Longitudinales , Masculino , Madres , Análisis Multivariante , Estudios Prospectivos , Análisis de Regresión , Infecciones del Sistema Respiratorio/inmunología , Factores de Riesgo , Estados Unidos/epidemiología , Adulto JovenRESUMEN
OBJECTIVE: To assess parent anxiety in response to genetic and islet autoantibody (IA) testing in children at increased genetic risk for type 1 diabetes followed from birth in The Environmental Determinants of Diabetes in the Young (TEDDY) study. RESEARCH DESIGN AND METHODS: Parent anxiety about TEDDY children's risk was assessed with the State Anxiety Inventory (SAI). Parents completed the SAI when the child was 3, 6, and 15 months old and annually thereafter. Children were tested for IA every 3 months for 4 years and every 6 months thereafter. Parent SAI scores of 6,799 children followed with IA testing for at least 1 and up to 6 years were examined. RESULTS: At study inception, parents showed high levels of anxiety in response to their child's increased genetic type 1 diabetes risk; mothers were more anxious than fathers, and parents with diabetes in the family were more anxious than parents with no family history. In response to repeated IA-negative (IA-) test results, parent anxiety declined to normal levels. Anxiety increased in parents faced with an IA-positive (IA+) test result. Parents faced with two or more types of IA+ test results showed particularly high levels of anxiety (all P < 0.001). CONCLUSIONS: Infant genetic screening for type 1 diabetes raises parent anxiety when the child is at increased risk, but anxiety dissipates over time in cases of repeated IA- results. IA+ results heighten parent anxiety, and parents faced with two or more types of IA+ results may experience considerable anxiety for longer periods.
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Ansiedad/psicología , Autoanticuerpos/sangre , Diabetes Mellitus Tipo 1/psicología , Padres/psicología , Alelos , Preescolar , Estudios de Cohortes , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/genética , Femenino , Finlandia , Estudios de Seguimiento , Pruebas Genéticas , Alemania , Humanos , Lactante , Insulina/sangre , Masculino , Factores de Riesgo , Suecia , Estados UnidosRESUMEN
BACKGROUND: The salutogenic model has been established as a health promoting resource that is related to a strong sense of coherence (SOC), positive subjective health and quality of life (QoL). The aim of the study was to compare internal and external resources, life style factors, perceived health and QoL in Japan and Austria and to determine associations among these factors. METHODOLOGY AND PRINCIPAL FINDINGS: A survey was conducted in a Japanese (N = 460) and an Austrian (N = 421) student sample using the following self-report health questionnaires: Sense of Coherence Scale (SOC-13), Social and Gender Role Scale, Multidimensional Scale of Perceived Social Support (MSPSS), Dutch Eating Behaviour Questionnaire (DEBQ), SF-12 Health Survey, and the Cross-cultural Health Survey. Analyses of data showed that age (ß -0.12), and stress (ß -0.21) were negatively related and SOC (ß 0.47), family support are (ß -0.35) positively related to mental QoL. Significant predictors for emotional strain, were female gender (ß -0.24), older age (ß-0.14), lower SOC (ß 0.28), less traditional gender and social role patterns (ß 0.10), more restrained eating (ß -0.20), more alcohol intake (ß -0.16), and more stress (ß -0.25) explaining 42% of the variance in Austrian students. In Japan stress (ß -0.38) was negatively related and SOC (ß 0.37) positively related to mental QoL. Older age (ß -0.20), lower SOC (ß 0.29) and more stress (ß -0.33) were identified as significant predictors explaining 35% of the variance in Japanese students. CONCLUSIONS AND SIGNIFICANCE: SOC and stress are strongly associated with QoL and perceived health in Austria as well as in Japan. SOC seems to be a crucial predictor for stress, and emotional health independent of the cultural context. A major challenge of cross-cultural research is to understand perceived health and QoL and the extent in which it is individually, socially, or culturally determined.
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Modelos Psicológicos , Calidad de Vida , Adulto , Austria , Femenino , Conductas Relacionadas con la Salud , Humanos , Japón , Masculino , Sentido de Coherencia , Adulto JovenRESUMEN
BACKGROUND: To characterize participant reasons for withdrawing from a diabetes focused longitudinal clinical observational trial (TEDDY) during the first three study years. METHODS: 8677 children were recruited into the TEDDY study. At participant withdrawal staff recorded any reason parents provided for withdrawal. Reasons were categorized into (1) family characteristics and (2) protocol reasons. Families who informed staff of their withdrawal were classified as active withdrawals (AW); families without a final contact were considered passive withdrawals (PW). RESULTS: Withdrawal was highest during the first study year (n = 1220). Most families were AW (n = 1549; 73.4%). PW was more common in the United States (n = 1001; 37.8%) and among young mothers (p = 0.001). The most frequent protocol characteristic was blood draw (55%) and the most common family reason was not having enough time (66%). The blood draw was more common among female participants; being too busy was more common among males. Both reasons were associated with study satisfaction. CONCLUSIONS: Results suggest that, for families of children genetically at risk for diabetes, procedures that can be painful/frightening should be used with caution. Study procedures must also be considered for the demands placed on participants. Study satisfaction should be regularly assessed as an indicator of risk for withdrawal.
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Recolección de Muestras de Sangre/psicología , Diabetes Mellitus Tipo 1/etiología , Pacientes Desistentes del Tratamiento/psicología , Preescolar , Diabetes Mellitus Tipo 1/sangre , Progresión de la Enfermedad , Femenino , Humanos , Lactante , Masculino , Factores SexualesRESUMEN
OBJECTIVE: Mothers of children at risk for type 1 diabetes report engaging in preventive behaviors. The purpose of this study is to further document these actions in an international, longitudinal sample and examine variables that predict whether mothers engage in these behaviors. RESEARCH DESIGN AND METHODS: This study examined an international sample (from Finland, Germany, Sweden, and the U.S.) from the naturalistic, longitudinal The Environmental Determinants of Diabetes in the Young (TEDDY) study, which tracked children genetically at risk for type 1 diabetes from birth to age 15 years. Mothers of 7,613 infants aged 6 months and 6,503 infants aged 15 months completed questionnaires assessing psychosocial factors and actions intended to prevent diabetes. RESULTS: Many mothers (29.9% at 6 months and 42.8% at 15 months) reported engaging in a behavior intended to prevent type 1 diabetes, with the largest percentages (20.9-29.2%) reporting making changes to their child's diet (e.g., reducing the consumption of sweets and carbohydrates). Factors related to engaging in preventive behaviors include older maternal age; higher maternal education; minority status; having only one child; having a first-degree relative with type 1 diabetes; being from a country other than Sweden; having an accurate perception of the child's increased risk for developing diabetes; having postpartum depression, maternal anxiety, and worry about the risk of diabetes; and believing that diabetes can be prevented. CONCLUSIONS: The findings of this study suggest that many mothers engage in actions to prevent diabetes and highlight the importance of tracking these behaviors to ensure the validity of naturalistic observational studies.
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Diabetes Mellitus Tipo 1/prevención & control , Madres/psicología , Conducta de Reducción del Riesgo , Adulto , Ansiedad/psicología , Dieta , Femenino , Alemania , Humanos , Lactante , Masculino , Factores de Riesgo , Encuestas y CuestionariosRESUMEN
OBJECTIVE: The TEDDY Study is an international, multi-center prospective study designed to identify the environmental triggers of type 1 diabetes (T1D) in genetically at-risk children. This report investigates ethnic minority (EM) differences in patterns of enrollment and retention in the US centers. METHODS: As of June 2009, 267,739 newborns had been screened at birth for high risk T1D genotypes. Data collected at the time of screening, enrollment and at the baseline visit were used. Descriptive and multiple-logistic regression analyses assessed differences between EM groups regarding exclusion, enrollment and early withdrawal. RESULTS: Of the 10,975 eligible subjects, 6,912 (67%) were invited to participate. EM subjects were more likely to be excluded because of an inability to contact. Of those invited 3,265 (47%) enrolled by the age of 4.5 months. Adjusted analyses showed that except for those classified as other EM, the odds of enrolling were similar across groups. EM subjects had elevated early withdrawal rates. Adjusted models demonstrated that this was significantly more likely among Hispanic subjects. CONCLUSION: Understanding patterns associated with EM participation in research extends our ability to make more accurate inferences and permits assessment of strategies that promote inclusion of EM to better address health disparities.
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Diabetes Mellitus Tipo 1/etiología , Grupos Minoritarios/estadística & datos numéricos , Pacientes Desistentes del Tratamiento/estadística & datos numéricos , Selección de Paciente , Estudios de Cohortes , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/etnología , Femenino , Disparidades en el Estado de Salud , Humanos , Lactante , Recién Nacido , Modelos Logísticos , Perdida de Seguimiento , Masculino , Tamizaje Neonatal , Estudios Prospectivos , Estados UnidosRESUMEN
OBJECTIVE: To assess parents' opinions about their participation in the longitudinal, multicenter study - The Environmental Determinants of Diabetes in the Young (TEDDY) consortium. METHODS: A survey was given to parents who had been in the study for ≥ 1 year. Parents rated the importance of different reasons for staying in TEDDY and how well different study components were working. Parents were also asked if they had suggestions for making TEDDY better and if they ever had thought of leaving TEDDY and if so, why. RESULTS: Out of the 3336 eligible families, 2000 completed the survey (59.1%); most (77.6%) were mothers. Survey completion was more common in European than US TEDDY sites and was associated with greater maternal education, more accurate perceptions about their child's risk of type 1 diabetes, longer participation in TEDDY and excellent attendance at TEDDY visits. "Having someone watching the child for development of T1DM" was most important reason given for staying in the study; other important reasons included "Helping science discover causes of diabetes" and "Getting child's antibody results". Most parents were very satisfied with the different components of TEDDY and had not thought of leaving the study. A minority (24%) of parents acknowledged some thoughts of leaving TEDDY and cited the blood draws, being too busy/not having enough time, the demanding protocol, and food diaries as their reasons for considering leaving. CONCLUSIONS: The study highlights factors important for successful implementation of demanding, longitudinal protocols. Friendly, devoted, skilled and knowledgeable staff with continuity makes the family comfortable. Keeping parents involved and informed on study progress is essential as is making procedures as smooth and painless as possible. Although the study is international the survey results were convergent across countries suggesting that the results have relevance to other similar studies to retain study participants.
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OBJECTIVE: Our objective was to identify characteristics of infants and their families who were enrolled, refused to enroll, or were excluded from The Environmental Determinants of Diabetes in the Young (TEDDY) study. METHOD: 16,435 infants screened at birth and identified as at increased genetic risk for type 1 diabetes (T1DM) were placed into one of three categories: enrolled, excluded, or refused to enroll. Enrollment, exclusion and refusal rates were compared across countries and between infants from the general population (GP) and infants with a first degree T1DM relative (FDR). A multivariate logistic model was used to identify factors associated with TEDDY enrollment. RESULTS: TEDDY enrollment, exclusion, and refusal rates differed by country and by GP/FDR status but reasons for refusal to enroll were similar across countries and GP/FDR populations. Sweden had the highest enrollment rate, US had the highest exclusion rate, and Finland had the highest refusal rate. FDR infants were more likely to enroll than GP infants. Inability to re-contact the family was the most common reason for exclusion. Primary reasons for refusal to enroll included protocol factors (e.g. blood draws) or family factors (e.g., too busy). Study enrollment was associated with FDR status, European country of origin, older maternal age, a singleton birth, and having another child in TEDDY. CONCLUSIONS: Findings highlight the importance of country specific estimates for enrollment targets in longitudinal pediatric studies and suggest that enrollment estimates should be lowered when the study involves the general population, painful procedures, or makes multiple demands on families.
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Diabetes Mellitus Tipo 1/etiología , Selección de Paciente , Negativa a Participar/estadística & datos numéricos , Ambiente , Europa (Continente) , Femenino , Humanos , Recién Nacido , Modelos Logísticos , Estudios Longitudinales , Masculino , Análisis Multivariante , Tamizaje Neonatal , Observación , Estados UnidosRESUMEN
Provision of relevant and accurate information is an important factor for patient-satisfaction. This study investigated the self-assessed level of information, information needs and sources of information of patients undergoing radiotherapy in correlation between socio-demographic, medical and psychological variables. A self-ministered questionnaire designed to measure the self-assessed level of information and information needs was distributed to 133 cancer patients before (t(1)) and 14 days after the first medical consultation (t(2)). "Anxiety" and "Social desirability" were assessed at t(1) and four groups of coping methods (repressive, sensitive, anxious, non-defensive/non-anxious) were derived. Sources of information were elicited at t(2). The self-assessed level of information increased, while the demand for information declined. Female patients felt better informed than males. Older patients had a lower self-assessed level of information than younger patients. Among the four groups using different methods of coping, the repressive group wanted the least information. Generally medical consultations were preferred and other sources of information rarely were used. Where there are a large number of older patients with a low educational background, the use of computers is not appropriate at the moment. It can, however, be assumed that the next generation of patients will have a more practical knowledge of computers, and will thus make better use of this method of communication.