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1.
Behav Med ; : 1-12, 2024 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-38706412

RESUMO

Adolescents with congenital heart disease (CHD) have elevated risk for acquired cardiovascular complications, increasing their vulnerability to e-cigarette-related health harms. Impulsivity and risky decision-making have been associated with adolescent substance use, but the relationships between these factors and e-cigarette-related outcomes among cardiovascular at-risk adolescents with CHD are unknown. This cross-sectional study aimed to (a) determine the associations of impulsivity and risky decision-making with e-cigarette-related outcomes (i.e. susceptibility, ever use, perceptions of harm and addictiveness) via variable-oriented analysis (logistic regression), (b) identify groups of adolescents with similar profiles of impulsivity and risky decision-making via exploratory person-oriented analysis (latent profile analysis; LPA), and (c) examine differences on e-cigarette-related outcomes between profile groups. Adolescents aged 12 to 18 years with CHD (N = 98) completed a survey assessing impulsivity facets (Short UPPS-P) and e-cigarette-related outcomes and were administered a risky decision-making task (Iowa Gambling Task, Version 2; IGT2). In variable-oriented analyses, impulsivity facets (negative urgency, positive urgency, lack of premeditation) but not risky decision-making were associated with e-cigarette susceptibility and ever use. The exploratory LPA identified two groups with similar patterns of responding on the Short UPPS-P and IGT2 labeled "Low Impulsivity" and "High Impulsivity," which were primarily characterized by significant differences in negative and positive urgency. Adolescents in the High Impulsivity group had increased odds of e-cigarette susceptibility but not ever use compared to the Low Impulsivity group. This work indicates that strategies to prevent e-cigarette use among adolescents with CHD may be enhanced by addressing impulsivity, particularly negative and positive urgency.

2.
J Pediatr Psychol ; 48(5): 458-467, 2023 05 20.
Artigo em Inglês | MEDLINE | ID: mdl-36810676

RESUMO

OBJECTIVE: Adolescents with congenital heart disease (CHD) are exposed to disease-related stressors and have elevated risk for cardiovascular and cognitive complications that are exacerbated by e-cigarettes and marijuana. The aims of this cross-sectional study are to: (1) identify the association between perceived global and disease-related stress and susceptibility to e-cigarettes and marijuana, (2) determine if the association between stress and susceptibility differs by gender, and (3) explore the association between stress and ever use of e-cigarettes and marijuana among adolescents with CHD. METHODS: Adolescents with CHD (N = 98; aged 12-18 years) completed self-report measures of susceptibility to/ever use of e-cigarettes and marijuana and global and disease-related stress. RESULTS: Susceptibility to e-cigarettes and marijuana was reported by 31.3% and 40.2% of adolescents, respectively. Ever use of e-cigarettes and marijuana was reported by 15.3% and 14.3% of adolescents, respectively. Global stress was associated with susceptibility to and ever use of e-cigarettes and marijuana. Disease-related stress was associated with susceptibility to marijuana. Females reported more global and disease-related stress than males, but the association of stress with susceptibility to e-cigarettes and marijuana did not differ by gender. CONCLUSIONS: Susceptibility to e-cigarettes and marijuana is common among adolescents with CHD and is associated with stress. Future work to examine the longitudinal associations between susceptibility, stress, and use of e-cigarettes and marijuana is warranted. Global stress may be an important consideration in the development of strategies to prevent these risky health behaviors among adolescents with CHD.


Assuntos
Comportamento do Adolescente , Cannabis , Sistemas Eletrônicos de Liberação de Nicotina , Cardiopatias Congênitas , Masculino , Feminino , Humanos , Adolescente , Estudos Transversais , Comportamento do Adolescente/psicologia
3.
J Cardiovasc Nurs ; 38(1): 60-69, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36037294

RESUMO

BACKGROUND: Adults with congenital heart defects (CHDs) have an increased risk for cardiovascular complications, but few are in optimal cardiovascular health. Executive function deficits, which are elevated among CHD survivors, may contribute to engagement in behaviors that increase cardiovascular risk. OBJECTIVE: The aim of this study was to identify the association between executive function and the health risk behaviors of tobacco use, saturated fat intake, and insufficient physical activity among young adults with CHDs. METHODS: Young adults with CHDs completed the Behavior Rating Inventory of Executive Function-Adult Version, which yields composite and 9 individual domain scores (eg, inhibition, working memory). Participants also completed self-report measures of tobacco use, saturated fat intake, and physical activity. Linear and logistic regression models determined the association between executive function and risky health behaviors, adjusting for demographic factors, disease status, and emotional distress. RESULTS: One in 10 young adults with CHDs reported clinically significant difficulties with global executive function. Difficulties with global executive function were associated with increased tobacco use ( P = .018) and greater saturated fat intake ( P = .015) but not insufficient physical activity ( P = .902). Difficulties with inhibition were specifically associated with increased tobacco use ( P = .003) and greater saturated fat intake ( P = .007), and problems with self-monitoring were associated with increased tobacco use ( P = .017). CONCLUSIONS: Executive function difficulties are associated with self-reported engagement in health risk behaviors among young adults with CHDs. Health behavior interventions for adult CHD survivors may require additional modifications that consider executive function problems, particularly difficulties with inhibition.


Assuntos
Função Executiva , Cardiopatias Congênitas , Adulto Jovem , Humanos , Função Executiva/fisiologia , Comportamentos de Risco à Saúde , Sobreviventes/psicologia , Cardiopatias Congênitas/psicologia , Autorrelato
4.
Ann Behav Med ; 56(7): 673-684, 2022 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-34951444

RESUMO

BACKGROUND: Individuals with congenital heart defects are at increased risk for developing further cardiovascular complications, which can be mitigated by increasing physical activity. Given that positive health behaviors begin declining during older adolescence, it is vital to promote lifestyle changes in this population. PURPOSE: The current study aims to (a) determine the feasibility/acceptability of the Congenital Heart Disease Physical Activity Lifestyle (CHD-PAL) intervention among adolescents (ages 15-18) with moderate and complex congenital heart defects, and (b) estimate the preliminary efficacy of CHD-PAL for increasing time spent in moderate-to-vigorous physical activity (MVPA) and cardiorespiratory fitness and decreasing sedentary behavior. METHODS: Eligible participants were randomized into either CHD-PAL (eight 30-min videoconferencing sessions over 20 weeks with an interventionist + Fitbit + exercise prescription) or a comparator (Fitbit + exercise prescription). RESULTS: Sixty adolescents were randomized (76% recruitment rate; 94% of participants were retained from baseline to follow-up). Most adolescents (73%) and their parents/guardians (76%) reported that the trial was enjoyable. While there was no effect of arm on change in MVPA, sedentary behavior, or cardiorespiratory fitness for the entire sample, among those who engaged in <21 min of MVPA on average at baseline, adolescents in the CHD-PAL intervention had an increase of 16 min/day of MVPA more than comparators (d = 0.90). CONCLUSIONS: The CHD-PAL intervention warrants examination in a larger trial to establish efficacy among those adolescents with a congenital heart defect who engage in <21 min of MVPA/day and should include follow-up assessments to examine effect durability. CLINICAL TRIALS REGISTRATION: NCT03335475.


Assuntos
Exercício Físico , Cardiopatias Congênitas , Adolescente , Estudos de Viabilidade , Cardiopatias Congênitas/terapia , Humanos , Estilo de Vida , Comunicação por Videoconferência
5.
J Pediatr Psychol ; 47(8): 859-869, 2022 08 12.
Artigo em Inglês | MEDLINE | ID: mdl-34725688

RESUMO

OBJECTIVE: The current study aimed to (a) describe moderate-to-vigorous physical activity (MVPA), sedentary behavior (SB), and cardiorespiratory fitness (VO2Peak) via objective assessment among adolescents with congenital heart disease (CHD), (b) examine gender differences on MVPA, SB, VO2Peak, and the Theory of Planned Behavior elements, and (c) identify whether gender moderates the relationships between the Theory of Planned Behavior elements and MVPA, SB, and VO2Peak. METHODS: Adolescent CHD survivors (N = 86; ages 15-18 years) wore an accelerometer to assess MVPA and SB, underwent an exercise stress test to assess VO2Peak, and completed a survey of the Theory of Planned Behavior elements as measured by perceived benefits (attitudes), family/friend support and perceived norms (social norms), and self-efficacy and barriers (perceived behavioral control) to engaging in physical activity. RESULTS: On average, CHD survivors engaged in 22.3 min (SD = 15.3) of MVPA/day and 9 hr of SB/day (M = 565.8, SD = 102.5 min). Females engaged in less MVPA but not more SB had a lower mean VO2Peak, reported lower self-efficacy, and perceived greater barriers than males. In a regression model, barriers explained unique variance in MVPA and VO2Peak, but the relationship between barriers and MVPA/VO2Peak did not vary by gender. Self-efficacy did not explain unique variance in MVPA and VO2Peak when included in a model with gender and barriers. CONCLUSIONS: Family/friend support for physical activity engagement may be an important consideration when developing physical activity interventions for adolescent CHD survivors. The role of gender differences in self-efficacy and perceived barriers on physical activity engagement warrants further investigation.


Assuntos
Cardiopatias Congênitas , Comportamento Sedentário , Acelerometria , Adolescente , Exercício Físico , Feminino , Humanos , Masculino , Fatores Sexuais , Inquéritos e Questionários
6.
Transfusion ; 61(9): 2637-2649, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34224590

RESUMO

BACKGROUND: This study aimed to promote competence, autonomy, and relatedness among first-time whole blood donors to enhance intrinsic motivation and increase retention. STUDY DESIGN AND METHODS: Using a full factorial design, first-time donors (N = 2002) were randomly assigned to a no-treatment control condition or to one of seven intervention conditions designed to promote donation competence, autonomy, relatedness, a combination of two (e.g., competence and autonomy), or all three constructs. Participants completed donor motivation measures before the intervention and 6 weeks later, and subsequent donation attempts were assessed for 1 year. RESULTS: There was no significant group difference in the frequency of donation attempts or in the number of days to return. Significant effects of group were observed for 10 of the 12 motivation measures, although follow-up analyses revealed significant differences from the control group were restricted to interventions that included an autonomy component. Path analyses confirmed direct associations between interventions involving autonomy and donor motivation, and indirect mediation of donation attempts via stronger donation intentions and lower donation anxiety. CONCLUSION: Among young, first-time, whole blood donors, brief interventions that include support for donor autonomy were associated with direct effects on donor motivation and indirect, but small, effects on subsequent donation behavior.


Assuntos
Bancos de Sangue , Doadores de Sangue , Motivação , Adulto , Ansiedade/etiologia , Atitude , Bancos de Sangue/estatística & dados numéricos , Doadores de Sangue/psicologia , Doadores de Sangue/estatística & dados numéricos , Doadores de Sangue/provisão & distribuição , Feminino , Humanos , Intenção , Masculino , Autoeficácia , Adulto Jovem
7.
J Behav Med ; 44(6): 772-783, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34185220

RESUMO

The relationship between smoking and illness perceptions among congenital heart disease (CHD) survivors is unknown. The primary aims of the present study were to compare the smoking prevalence among CHD survivors to a nationally representative U.S. sample and examine the relationship between smoking and illness perceptions. CHD survivors (N = 744) from six U.S. sites participated in the study. The smoking prevalence among CHD survivors (9.3%) was lower than the general population (15.3%). However, 23.3% of CHD survivors with severe functional limitations smoked. Smoking prevalence differed by U.S. region, with a greater proportion of those attending CHD care in the Midwest reporting smoking (11.8%). The illness perception dimensions of Concern and Emotional Response were independently associated with smoking. Differences in illness perceptions enhance our understanding of smoking among CHD survivors and may guide interventions promoting positive health behaviors. The protocol for the study from which the present analyses were conducted was recorded at ClinicalTrials.gov: NCT02150603.


Assuntos
Cardiopatias Congênitas , Adulto , Emoções , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/psicologia , Humanos , Prevalência , Fumar/epidemiologia , Sobreviventes/psicologia , Estados Unidos/epidemiologia
8.
Transfusion ; 59(9): 2876-2884, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31198990

RESUMO

BACKGROUND: Interventions intended to motivate donors to return can be costly and time consuming. The current study examined the effect of a Web-based automated interview, informed by motivational interviewing and self-determination theory, on donor intention, motivation, and behavior in a sample of highly experienced donors. STUDY DESIGN AND METHODS: Approximately 1 week after donating, 1177 highly experienced whole blood donors (mean prior donations, 35.5; mean age, 46.9 years; 66.3% female) participated in a study in which they were randomly assigned to either a donor motivational interview (n = 544) or knowledge interview (n = 633). Measures of donor motivation and psychological need support were obtained before the interviews, and again at postinterview assessments conducted approximately 2 days later and 7 weeks later. Blood center records were used to assess repeat donation attempts for 1 year after the interviews. RESULTS: Relative to the knowledge interview, participants in the motivational interview had larger increases in donation intention and self-efficacy from preinterview to the first follow-up. Among women only, the motivational interview was associated with greater competence and relatedness increases at both follow-up assessments. CONCLUSION: An automated motivational interview appears to be a feasible way to promote donation intention and self-efficacy. Although the observed effects were small among highly experienced donors, we are currently assessing the potential effect of this intervention among less experienced donors.


Assuntos
Doadores de Sangue/psicologia , Intenção , Intervenção Baseada em Internet , Entrevista Motivacional/métodos , Autoeficácia , Adulto , Atitude , Doadores de Sangue/estatística & dados numéricos , Computadores , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Periodicidade , Autonomia Pessoal , Adulto Jovem
10.
Transfusion ; 57(6): 1527-1535, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28394024

RESUMO

BACKGROUND: Recruitment and retention of first-time and repeat donors is essential to maintain a stable blood supply. Recent evidence has shown that promoting internal motivation may be an effective strategy to enhance donation behavior. We tested the efficacy of an in-person motivational interview at increasing internal motivation and intention to donate. STUDY DESIGN AND METHODS: A sample of 219 donors and nondonors (69.4% female; mean ± SD age, 19.2 ± 1.1 years; 52.1% nondonors) were randomly assigned to either a motivational or a knowledge interview. Immediately before and after the interview participants completed a measure of donation intention and the Blood Donor Identity Survey, which is a multidimensional measure of donor motivation. RESULTS: A latent profile analysis revealed three distinct latent classes, which were identified as low internal motivation, mid internal motivation, and high internal motivation. Comparison of change in latent class from pre- to postinterview revealed that a higher proportion of participants in the motivational interview group moved to a more internally motivated class compared to the knowledge interview group (i.e., 34% vs. 4%, respectively). Further, relative to the knowledge interview group, participants in the motivational interview group reported greater increases in intention to donate. CONCLUSION: A brief motivational interview may enhance donation intention and intrinsic motivation among both experienced donors and nondonors alike.


Assuntos
Doadores de Sangue/psicologia , Entrevista Motivacional , Adulto , Feminino , Humanos , Masculino , Motivação , Adulto Jovem
11.
Transfusion ; 57(10): 2433-2439, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28671277

RESUMO

BACKGROUND: Based on the hypothesis that self-determined motivation is associated with an increased likelihood of future behavior, the present study examined the ability of a motivational interview to promote internal motivation for giving blood and future donation attempts. STUDY DESIGN AND METHODS: A sample of 484 recent whole-blood and double red blood cell donors (62.4% female; age = 30.2 ± 11.8 years) were randomly assigned to either a telephone-delivered motivational interview or a control call approximately 6 weeks after donating. Several weeks before the call and again 1 week after the call, participants completed the Blood Donor Identity Survey, a multidimensional measure of donor motivation, to derive indices of amotivation, external motivation, and internal motivation to give blood. Repeat donation attempts were tracked using blood center records. RESULTS: Relative to controls, participants in the motivational interview group showed a shift toward more self-determined motivation, as indicated by significant decreases in amotivation (p = 0.01) and significant increases in external (p = 0.009) and internal (p = 0.002) motivation. Furthermore, those with initially high levels of autonomous motivation were more likely to make a donation attempt in the subsequent year if they completed the motivational interview (71.1%) versus the control call (55.1%). CONCLUSION: Motivational interviewing is a potentially useful strategy to enhance retention of existing blood donors, particularly among those who express a greater sense of internal motivation for giving.


Assuntos
Doadores de Sangue/provisão & distribuição , Entrevistas como Assunto , Motivação , Adulto , Doadores de Sangue/psicologia , Feminino , Humanos , Masculino , Autonomia Pessoal , Inquéritos e Questionários , Adulto Jovem
12.
Transfusion ; 56(6 Pt 2): 1636-44, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26826054

RESUMO

BACKGROUND: In contrast to standard donor retention strategies (e.g., mailings, phone calls, text messages), we developed a brief telephone interview, based on motivational interviewing principles, that encourages blood donors to reflect upon their unique motivators and barriers for giving. This study examined the effect of this motivational interview, combined with action and coping plan components, on blood donor motivations. STUDY DESIGN AND METHODS: The design was to randomly assign blood donors to receive either a telephone-delivered motivational interview with action and coping plan components or a control call approximately 6 weeks after their most recent donation. Participants completed a series of surveys related to donation motivation approximately 3 weeks before telephone contact (precall baseline) and then repeated these surveys approximately 1 week after telephone contact (postcall). RESULTS: The sample was 63% female, included a majority (52.6%) of first-time blood donors, and had a mean age of 30.0 years (SD, 11.7 years). A series of analyses of variance revealed that, relative to controls (n = 244), donors in the motivational interview group (n = 254) had significantly larger increases in motivational autonomy (p = 0.001), affective attitude (p = 0.004), self-efficacy (p = 0.03), anticipated regret (p = 0.001), and intention (p = < 0.001), as well as larger decreases in donation anxiety (p = 0.01), from precall baseline to postcall assessment. CONCLUSION: This study supports motivational interviewing with action and coping planning as a novel strategy to promote key contributors to donor motivation.


Assuntos
Doadores de Sangue/psicologia , Doadores de Sangue/provisão & distribuição , Entrevista Psicológica , Motivação , Adolescente , Adulto , Atitude , Emoções , Feminino , Humanos , Intenção , Masculino , Autoeficácia , Inquéritos e Questionários , Telefone , Voluntários , Adulto Jovem
13.
Clin Transplant ; 28(4): 384-93, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24750288

RESUMO

BACKGROUND: Although lung transplantation improves quality of life, most psychosocial research focuses on adverse psychological and social functioning outcomes. Positive effects, particularly in the late-term years as physical morbidities increase, have received little attention. We provide the first data on a psychological benefit - post-traumatic growth (PTG) - and we focused on long-term (>5 yr) survivors. METHODS: Among 178 patients from a prospective study of mental health during the first two yr post-transplant, we recontacted survivors 6-11 yr post-transplant. We assessed PTG (i.e., positive psychological change resulting from the transplant) and examined its relationship to other patient characteristics with multivariable regression analyses. RESULTS: Sixty-four patients (86% of survivors) were assessed (M = 8.1 yr post-transplant, SD = 1.2). Mean PTG exceeded the scale's midpoint (M = 38.6, SD = 10.0; scale midpoint = 25). Recipients experiencing greater PTG were female (p = 0.022), less educated (p = 0.014), and had a history of post-transplant panic disorder (p = 0.005), greater friend support (p = 0.048), and better perceived health (p = 0.032). Neither other pre- or post-transplant mood and anxiety disorders nor transplant-related morbidities (acute rejection, bronchiolitis obliterans syndrome) predicted PTG. CONCLUSIONS: PTG exceeded levels observed in other chronic disease populations, suggesting that lung transplantation may uniquely foster positive psychological change in long-term survivors. PTG occurs despite physical and psychiatric morbidities. Whether PTG promotes other positive post-transplant psychosocial outcomes deserves attention.


Assuntos
Adaptação Psicológica , Acontecimentos que Mudam a Vida , Transplante de Pulmão/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Transtornos de Ansiedade/etiologia , Feminino , Seguimentos , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Transtornos do Humor/etiologia , Análise Multivariada , Complicações Pós-Operatórias , Estudos Prospectivos , Testes Psicológicos , Transtornos de Estresse Pós-Traumáticos/etiologia , Estresse Psicológico , Adulto Jovem
14.
Eur J Cardiovasc Nurs ; 23(1): 62-68, 2024 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-37163661

RESUMO

AIMS: As congenital heart disease (CHD) survivors age, they are confronted with elevated risk of cardiovascular morbidity and increasingly complex disease self-management demands. Given that stress is associated with poor physical and psychosocial outcomes, it is crucial to examine how disease-related stress changes over time in this population. However, this outcome has received little research attention to date. This study aimed to identify demographic and clinical predictors of change in disease-related stress over 6 years among CHD survivors. METHODS AND RESULTS: Congenital heart disease survivors (N = 252, Mage = 25.6 ± 7.1, 52.9% female) completed the first 13 items of the Responses to Stress Questionnaire, adapted for use among CHD survivors, to assess disease-related stressors at study entry (T1) and 6-year follow-up (T2). Age, gender, estimated family income, and New York Heart Association (NYHA) functional class at T1 were entered into mixed linear models to determine their impact on change in disease-related stress. Older age (P < 0.001), lower income (P < 0.001), and presence of functional limitations (NYHA ≥ II) (P < 0.001) predicted greater increases in disease-related stress. When controlling for NYHA, functional class, and income, a significant time by age interaction was identified such that disease-related stress increased over time among those who were adolescents at T1 [b = 4.20, P = 0.010, 95% confidence interval (1.01, 7.40)], but remained stable among young adults. CONCLUSION: The transition from adolescence to adulthood may be a period of increasing disease-related stress. Healthcare providers should consider screening adolescents for elevated disease-related stress during transition education and provide resources to bolster resilience.


Assuntos
Cardiopatias Congênitas , Adolescente , Adulto Jovem , Humanos , Feminino , Masculino , Seguimentos , Cardiopatias Congênitas/psicologia , Inquéritos e Questionários , Sobreviventes/psicologia
15.
Liver Transpl ; 19(11): 1172-80, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23960026

RESUMO

For patients with end-stage liver disease, commonly used indices of nutritional status (ie, body weight and body mass index) are often inflated because of fluid overload (ie, ascites and peripheral edema), and this results in an underdiagnosis of malnutrition. Because muscle is the largest protein reservoir in the body, an estimate of the muscle mass may be a more reliable and valid estimate of nutritional status. Therefore, we used pretransplant computed tomography data for 338 liver transplantation (LT) candidates to identify muscle and fat mass on the basis of a specific abdominal transverse section commonly used in body composition analyses, and we investigated the contribution of this measure to specific post-LT outcomes. We found that the majority of our patients (68%) could be defined as cachectic. For men, muscle mass predicted many important posttransplant outcomes, including intensive care unit (ICU) stay, total length of stay (LOS), and days of intubation. Muscle mass was a significant predictor of survival and also predicted disposition to home versus another facility. For women, muscle mass predicted ICU stay, total LOS, and days of intubation, but the effect was modest. Muscle mass did not predict survival or disposition for women. In conclusion, because pretransplant muscle mass is associated with many important postoperative outcomes, we discuss these findings in the context of possible pretransplant interventions for either improving or sustaining muscle mass before surgery.


Assuntos
Transplante de Fígado , Músculo Esquelético/patologia , Adulto , Idoso , Composição Corporal , Feminino , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Modelos de Riscos Proporcionais , Caracteres Sexuais
16.
Clin Trials ; 10(4): 568-86, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23818435

RESUMO

BACKGROUND: Epilepsy is a common neurological disorder that affects approximately 50 million people worldwide. Both risk of epilepsy and response to treatment partly depend on genetic factors, and gene identification is a promising approach to target new prediction, treatment, and prevention strategies. However, despite significant progress in the identification of genes causing epilepsy in families with a Mendelian inheritance pattern, there is relatively little known about the genetic factors responsible for common forms of epilepsy and so-called epileptic encephalopathies. Study design The Epilepsy Phenome/Genome Project (EPGP) is a multi-institutional, retrospective phenotype-genotype study designed to gather and analyze detailed phenotypic information and DNA samples on 5250 participants, including probands with specific forms of epilepsy and, in a subset, parents of probands who do not have epilepsy. RESULTS: EPGP is being executed in four phases: study initiation, pilot, study expansion/establishment, and close-out. This article discusses a number of key challenges and solutions encountered during the first three phases of the project, including those related to (1) study initiation and management, (2) recruitment and phenotyping, and (3) data validation. The study has now enrolled 4223 participants. CONCLUSIONS: EPGP has demonstrated the value of organizing a large network into cores with specific roles, managed by a strong Administrative Core that utilizes frequent communication and a collaborative model with tools such as study timelines and performance-payment models. The study also highlights the critical importance of an effective informatics system, highly structured recruitment methods, and expert data review.


Assuntos
Epilepsia/genética , Genótipo , Fenótipo , Pesquisa em Genética , Humanos , Gestão da Informação , Análise de Sequência com Séries de Oligonucleotídeos , Projetos de Pesquisa , Estudos Retrospectivos
17.
Cureus ; 15(7): e42539, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37637658

RESUMO

Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that presents with delays in developmental milestones, social impairment, and behavioral difficulties. Treatment relies upon an intensive individualized multidisciplinary medical and therapeutic approach. This case presents a child affected by ASD and other associated conditions, whose care was significantly limited by the effects of social determinants of health, including lack of transportation, housing instability, low income, and most importantly, lack of health insurance. Without universal health coverage, the US healthcare system requires that patients have insurance or pay out-of-pocket to access medical care. It is vital that healthcare providers are able to recognize and address these barriers in order to help pediatric patients and their families navigate a difficult and often inequitable healthcare system. It is also crucial to emphasize the importance of healthcare providers, policymakers, and advocacy organizations to work together to address the systemic barriers that limit access to quality care for children with ASD.

18.
Heart Lung ; 58: 198-203, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36587561

RESUMO

BACKGROUND: Adolescents with congenital heart disease (CHD) are insufficiently physically active. Given that increasing physical activity may reduce their cardiovascular risk, it is important to identify correlates of this behavior. Perceived benefits of and barriers to physical activity are associated with physical activity engagement. Existing research has only considered these constructs separately. This population may be ambivalent toward physical activity (i.e., perceive both strong benefits and barriers). The association of ambivalence and physical activity related outcomes is unknown among this at-risk population. OBJECTIVE: Determine the association of ambivalence and sedentary behavior, moderate-to-vigorous physical activity (MVPA), and cardiorespiratory fitness (VO2Peak) among adolescents with CHD. METHODS: The present study is an analysis of data from an eligibility assessment for a randomized clinical trial of an intervention to promote MVPA among adolescents aged 15 to 18 years with moderate or complex CHD. Participants (N = 84) completed a survey assessing perceived benefits and barriers from which ambivalence toward physical activity was calculated, an exercise stress test to measure VO2Peak, and wore an accelerometer for one week to determine their engagement in sedentary behavior and MVPA. Linear regression analyses determined associations between ambivalence and physical activity related outcomes. RESULTS: Greater ambivalence toward physical activity was associated with increased sedentary behavior, decreased MVPA, and reduced VO2Peak, adjusting for demographic and clinical covariates. CONCLUSIONS: Ambivalence is associated with objectively measured physical activity (sedentary behavior, MVPA) and a biomarker of cardiovascular health (VO2Peak). Screening for ambivalence may help clinicians identify those most likely to benefit from physical activity-related education.


Assuntos
Aptidão Cardiorrespiratória , Cardiopatias Congênitas , Humanos , Adolescente , Exercício Físico , Fatores de Risco , Teste de Esforço , Aptidão Física
19.
Clin Mol Allergy ; 10(1): 8, 2012 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-22838633

RESUMO

BACKGROUND: Thymic stromal lymphopoietin (TSLP) and eosinophils are prominent components of allergic inflammation. Therefore, we sought to determine whether TSLP could activate eosinophils, focusing on measuring the regulation of TSLPR expression on eosinophils and degranulation in response to TSLP, as well as other eosinophil activation responses. METHODS: Eosinophil mRNA expression of TSLPR and IL-7Rα was examined by real-time quantitative PCR of human eosinophils treated with TNFα and IL-5 family cytokines, and TSLPR surface expression on eosinophils was analyzed by flow cytometry. Eosinophils were stimulated with TSLP (with and without pre-activation with TNFα and IL-3) and evaluated for release of eosinophil derived neurotoxin (EDN), phosphorylation of STAT5, and survival by trypan blue exclusion. A blocking antibody for TSLPR was used to confirm the specificity of TSLP mediated signaling on eosinophil degranulation. RESULTS: Eosinophil expression of cell surface TSLPR and TSLPR mRNA was upregulated by stimulation with TNFα and IL-3. TSLP stimulation resulted in release of EDN, phosphorylation of STAT5 as well as promotion of viability and survival. TSLP-stimulated eosinophil degranulation was inhibited by a functional blocking antibody to TSLPR. Pre-activation of eosinophils with TNFα and IL-3 promoted eosinophil degranulation at lower concentrations of TSLP stimulation. CONCLUSIONS: This study demonstrates that eosinophils are activated by TSLP and that eosinophil degranulation in response to TSLP may be enhanced on exposure to cytokines present in allergic inflammation, indicating that the eosinophil has the capacity to participate in TSLP-driven allergic responses.

20.
Prog Transplant ; 22(3): 280-92; quiz 293, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22951506

RESUMO

CONTEXT: Although some living donors experience psychological, somatic, and interpersonal difficulties after donation, interventions to prevent such outcomes have not been developed or evaluated. OBJECTIVE: To (1) summarize empirical evidence on psychosocial outcomes after donation, (2) describe a theoretical framework to guide development of an intervention to prevent poor outcomes, and (3) describe development and initial evaluation of feasibility and acceptability of the intervention. METHODS: Based on a narrative literature review suggesting that individuals ambivalent about donation are at risk for poor psychosocial outcomes after donation, the intervention targeted this risk factor. Intervention structure and content drew on motivational interviewing principles in order to assist prospective donors to resolve ambivalence. Data were collected on donors' characteristics at our institution to determine whether they constituted a representative population in which to evaluate the intervention. Study participants were then recruited to assess the feasibility and acceptability of the intervention. They were required to have scores greater than 0 on the Simmons Ambivalence Scale (indicating at least some ambivalence about donation). RESULTS: Our population was similar to the national living donor population on most demographic and donation-related characteristics. Eight individuals who had been approved to donate either a kidney or liver segment were enrolled for pilot testing of the intervention. All successfully completed the 2-session telephone-based intervention before scheduled donation surgery. Participants' ratings of acceptability and satisfaction were high. Open-ended comments indicated that the intervention addressed participants' thoughts and concerns about the decision to donate. CONCLUSIONS: The intervention is feasible, acceptable, and appears relevant to donor concerns. A clinical trial to evaluate the efficacy of the intervention is warranted.


Assuntos
Doadores Vivos/psicologia , Transtornos Mentais/prevenção & controle , Saúde Mental , Adulto , Tomada de Decisões , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
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