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1.
J Dev Behav Pediatr ; 2020 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-32168259

RESUMO

OBJECTIVE: Alcohol use can worsen attention-deficit/hyperactivity disorder (ADHD) symptoms, interfere with treatment, and worsen outcomes. Our objective was to describe parental perceptions of alcohol use for their adolescents with ADHD. METHODS: Parents of adolescents with ADHD completed an online survey about perceptions of adolescent alcohol use for adolescents with ADHD. We described the level of parental concern about the impacts of alcohol use on their adolescent's functioning. We assessed whether specific covariates were associated with the level of parental concern. RESULTS: Of 290 parents who completed the survey, 96.5% were women, and 66.1% had an educational attainment of college degree or higher. Most adolescents (75.4%) took ADHD medication, and 59.9% had comorbid anxiety or depression. Almost one-third (30.3%) of parents perceived that their adolescent was more likely to use alcohol because of ADHD, whereas 34.8% of parents disagreed with this and 34.8% of parents were neutral. Parents who suspected their adolescent regularly used alcohol were less likely to report concern about the impact of alcohol on their adolescent's school performance or ADHD medication effectiveness compared with parents who did not suspect regular adolescent alcohol use. Almost half of the parents (48.5%) did not report discussing the impact of alcohol use on ADHD with their adolescent. CONCLUSION: Many parents of adolescents with ADHD do not understand the unique risks of alcohol use for their adolescents. In addition, if alcohol use harm is not obvious, parents may not perceive there to be concerns about alcohol use on functioning. Parental education about alcohol use and ADHD is needed.

2.
J Sch Health ; 2020 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-32212160

RESUMO

BACKGROUND: Screening, Brief Intervention and Referral to Treatment (SBIRT) is a clinical guideline that can help delay, prevent or reduce substance use behaviors in youth. We aimed to describe the experiences of middle and high school (MS and HS) students attending a school with an SBIRT program. METHODS: This was a survey study conducted in 2 school districts that implemented SBIRT programs prior to statewide roll-out of mandatory school SBIRT in Massachusetts, in which students were asked about past-year substance use and then received brief counseling by a school professional. Students in grades that received SBIRT were subsequently invited to complete an electronic questionnaire about their SBIRT experience. RESULTS: A total of 890 students were included in the study (63.7% MS, 36.3% HS). Experiences of school SBIRT were predominantly positive: 74.0% of participants reported that the information received was useful. Students who reported having used substances were less likely to agree that "schools should screen for substance use" than students who did not report substance use (AOR: 0.39, 95%CI: 0.29-0.53). CONCLUSIONS: Most respondents found SBIRT of value, though students with past-year substance use were less positive about the experience. More research is needed to optimize SBIRT delivery in schools.

3.
J Addict Med ; 2020 Jan 24.
Artigo em Inglês | MEDLINE | ID: mdl-31985512

RESUMO

BACKGROUND: Youth with chronic medical conditions (YCMC) use alcohol at levels similar to their healthy peers but face elevated risk for adverse health consequences. As salient reasons to abstain from or limit drinking (RALD) among YCMC are unknown, we sought to identify clusters of RALD and test associations with use behaviors. METHODS: Eligible YCMC (ages 9-18) recruited from outpatient clinics reported their use behaviors and importance of potential RALD. Cluster analysis was used to discern RALD patterns, which were examined as predictors of alcohol use using multivariate regression. RESULTS: Among 398 participants, 30.9% reported past year alcohol use. Concerns about impacts on medications, school, and disease status were the most frequently endorsed RALD; prior negative experiences with alcohol and family history were the least frequently endorsed. Five RALD clusters were identified for all YCMC and 2 for recent drinkers. Compared to the cluster with high endorsement of multiple general and health-related RALD, those predominantly citing concerns about addiction and those not strongly endorsing any RALD consistently reported greater alcohol use. Among recent drinkers, the cluster characterized by low concern across multiple RALD also consistently reported greater alcohol use compared to their counterparts expressing moderate concern. CONCLUSIONS: For YCMC, RALD are complex but endorsement of multiple general and health-related RALD is associated with less use, and health concerns are especially prevalent. More research is needed to understand how salient RALD can inform tailored interventions that aim to delay and reduce substance use and improve health outcomes for YCMC.

4.
Am J Prev Med ; 58(1): 79-88, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31806270

RESUMO

INTRODUCTION: Harnessing engagement in online searching and social media may provide complementary information for monitoring alcohol use, informing prevention and policy evaluation, and extending knowledge available from national surveys. METHODS: Relative search volumes for 7 alcohol-related keywords were estimated from Google Trends (data, 2014-2017), and the proportion of alcohol use-related Twitter posts (data, 2014-2015) was estimated using natural language processing. Searching/posting measures were created for all 50 U.S. states plus Washington, D.C. Survey reports of alcohol use and summaries of state alcohol policies were obtained from the Behavioral Risk Factor Surveillance System (data, 2014-2016) and the Alcohol Policy Scale. In 2018-2019, associations among searching/posting measures and same state/year Behavioral Risk Factor Surveillance System reports of recent (past-30-day) alcohol use and maximum number of drinks consumed on an occasion were estimated using logistic and linear regression, adjusting for sociodemographics and Internet use, with moderation tested in regressions that included interactions of select searching/posting measures and the Alcohol Policy Scale. RESULTS: Recent alcohol use was reported by 52.93% of 1,297,168 Behavioral Risk Factor Surveillance System respondents, which was associated with all state-level searching/posting measures in unadjusted and adjusted models (p<0.0001). Among drinkers, most searching/posting measures were associated with maximum number of drinks consumed (p<0.0001). Associations varied with exposure to high versus low levels of state policy controls on alcohol. CONCLUSIONS: Strong associations were found among individual alcohol use and state-level alcohol-related searching/posting measures, which were moderated by the strength of state alcohol policies. Findings support using novel personally generated data to monitor alcohol use and possibly evaluate effects of alcohol control policies.

6.
J Addict Med ; 2019 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-31403520

RESUMO

: Approximately 5% of adolescents in the US meet criteria for a substance use disorder (SUD), and many of them benefit from residential treatment programs at points in the course of the disorder to achieve early sobriety and stabilization. Youth with chronic medical conditions use alcohol, marijuana, and other substances at levels similar to peers, but are at greater risk of progression to heavy or problem use of alcohol, marijuana, and tobacco by young adulthood and often encounter unique treatment barriers that limit access to an appropriate level of care. We describe 2 such adolescents; a 15-year-old boy with type 1 diabetes who experienced interruptions in substance use treatment because of concerns regarding routine glycemic management and a 17-year-old boy with inflammatory bowel disease, who experienced treatment delays in the context of increasing alcohol and marijuana use because of digestive symptoms. For both of these adolescents, lack of access to professionals who could manage chronic medical conditions prevented delivery of substance use treatment and resulted in an increase in substance use behaviors. These cases illustrate the need for integrated substance use care within medical specialty settings. We propose opportunities for improvement, such as providing cross-training for medical and addiction treatment teams and integration of substance use treatment within traditional medical facilities.

7.
Subst Abus ; : 1-4, 2019 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-31361591

RESUMO

Background: Perceived riskiness of marijuana in adolescents has been trending downward in the context of increasing legality and availability. Low perceived riskiness has been associated with marijuana use though evidence is lacking on associations among use and more specific claims about marijuana's safety and benefit, improved understanding of which could guide clinical interventions to reduce use. Methods: We analyzed cross-sectional survey data collected from 502 adolescents aged 14-18 years recruited from an urban adolescent primary care clinic. Self-report questionnaires were administered via tablet computer. Use of marijuana was assessed with a brief validated screening tool, and agreement with each of five statements about marijuana's riskiness and health properties were reported using a four-point Likert scale. We conducted multivariable logistic regressions to determine the association between perceived riskiness and other marijuana-related beliefs and past-year marijuana use. Results: In total, 149 adolescents reported past-year marijuana use (29.7%). High overall perceived risk was associated with lower rates of past-year use (AOR 0.27, 95%CI: 0.15-0.48). Agreement with positive health beliefs that "marijuana can help teenagers focus in school" and that "marijuana is safe because it's natural" were associated with past-year marijuana use (respectively, AOR 5.50, 95%CI: 3.06-9.88 and AOR 6.61, 95%CI: 3.59-12.19) while agreement with negative health beliefs that "marijuana can affect youth even after they don't feel high anymore" and that "marijuana can be addictive" were both associated with lower rates of use (AOR 0.56, 95%CI: 0.31-0.99, and AOR 0.30, 95%CI: 0.16-0.56, respectively), adjusting for sociodemographic factors and use of other substances. Conclusions: Marijuana use varied in association with beliefs about its beneficial and harmful health properties. Clinical interventions that target specific marijuana-related health beliefs including unfounded claims of benefit may provide robust talking points for centering provider guidance and public health messaging.

9.
J Adolesc Health ; 64(6): 804-806, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31122509

RESUMO

PURPOSE: We seek to determine how youth with chronic medical conditions experience alcohol screening and counseling. METHODS: Adolescents with type I diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention deficit hyperactivity disorder, or inflammatory bowel disease were surveyed. Descriptive statistics and regression analysis quantified rates of asking and counseling about alcohol. RESULTS: Of 390 participants (75.1% white/non-Hispanic, 51.8% female, average age 16.4 years), 70% reported being asked about their alcohol use by a healthcare provider, and 76% reported receiving at least one message regarding alcohol and health. Of past year drinkers, 54% disclosed use to their provider. Only 2.0% of youth reported receiving the message "I should not drink." CONCLUSIONS: Most youth with chronic medical conditions were asked and counseled about alcohol use although few heard unambiguous recommendations to avoid alcohol consumption.

10.
Drug Alcohol Depend ; 199: 59-67, 2019 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-30999251

RESUMO

BACKGROUND: Given a rapidly changing policy landscape, we sought to characterize the effects of state marijuana laws on parents' views of marijuana use by their teenage children. METHODS: Data are from 595 respondents to a nationally administered, web-based survey of parents of adolescents (ages 13-18 years) with any of three chronic conditions (type 1 diabetes, rheumatic disease, attention-deficit/hyperactivity disorder). Multivariate ordinal logistic regression was used to model the effects of parents' reports of state cannabis laws on their views toward marijuana use by their child. RESULTS: While 89.9% said any marijuana use was risky for their child, 27.9% would approve of its use if prescribed as medicine. Parents reporting marijuana decriminalization (11.1%) were more amenable to teenage use, less concerned about how marijuana might impact their child's condition, more accepting of the safety of marijuana as medicine, and approved its use with a prescription. Parents reporting legal medical (35.6%) or recreational (5.7%) use were more likely to report that their child has tried or used marijuana regularly. Parents reporting legal recreational use were less likely to agree that marijuana has medical benefits for their child. CONCLUSIONS: Among parents of medically vulnerable children, perceiving state marijuana policies as more permissive is strongly associated with lower perceived riskiness of marijuana use for their children. State marijuana policies are changing with implications for how parents of medically vulnerable youth view and potentially govern marijuana use by their medically vulnerable children.


Assuntos
Doença Crônica/psicologia , Legislação de Medicamentos , Uso da Maconha/legislação & jurisprudência , Uso da Maconha/psicologia , Pais/psicologia , Populações Vulneráveis/psicologia , Adolescente , Adulto , Cannabis , Doença Crônica/epidemiologia , Estudos Transversais , Feminino , Humanos , Masculino , Fumar Maconha/efeitos adversos , Fumar Maconha/legislação & jurisprudência , Fumar Maconha/psicologia , Uso da Maconha/efeitos adversos , Pessoa de Meia-Idade , Inquéritos e Questionários
11.
J Diabetes Sci Technol ; 13(3): 445-456, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-31010315

RESUMO

BACKGROUND: We sought to quantify the efficiency and acceptability of Internet-based recruitment for engaging an especially hard-to-reach cohort (college-students with type 1 diabetes, T1D) and to describe the approach used for implementing a health-related trial entirely online using off-the-shelf tools inclusive of participant safety and validity concerns. METHOD: We recruited youth (ages 17-25 years) with T1D via a variety of social media platforms and other outreach channels. We quantified response rate and participant characteristics across channels with engagement metrics tracked via Google Analytics and participant survey data. We developed decision rules to identify invalid (duplicative/false) records (N = 89) and compared them to valid cases (N = 138). RESULTS: Facebook was the highest yield recruitment source; demographics differed by platform. Invalid records were prevalent; invalid records were more likely to be recruited from Twitter or Instagram and differed from valid cases across most demographics. Valid cases closely resembled characteristics obtained from Google Analytics and from prior data on platform user-base. Retention was high, with complete follow-up for 88.4%. There were no safety concerns and participants reported high acceptability for future recruitment via social media. CONCLUSIONS: We demonstrate that recruitment of college students with T1D into a longitudinal intervention trial via social media is feasible, efficient, acceptable, and yields a sample representative of the user-base from which they were drawn. Given observed differences in characteristics across recruitment channels, recruiting across multiple platforms is recommended to optimize sample diversity. Trial implementation, engagement tracking, and retention are feasible with off-the-shelf tools using preexisting platforms.

12.
PLoS One ; 14(1): e0209963, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30673730

RESUMO

Increasing numbers of youth globally live with a chronic illness. These youth use alcohol and marijuana at levels equal to or greater than their healthy peers and, when using, are at elevated risk for regular or problem use and adverse consequences to their condition. Little is known about whether behavioral theories commonly invoked to explain adolescent substance use apply to this group, limiting our ability to develop, tailor and target preventive interventions. We interviewed youth ages 16-19 years in care for a chronic disease to gain knowledge of this group's perspectives on substance use risk, decision-making, and preferences for clinical guidance. Interviews were transcribed and thematically analyzed. Three principal themes emerged: first, having a chronic disease frames understanding of and commitment to health protecting behaviors and impacts decisions to avoid behaviors that carry risks for disease complications and flares; second, developmental impulses typical of adolescence can amplify an adolescent's propensity to take risks despite medical vulnerability and direct youth toward maladaptive choices to mitigate risk; and third, poor knowledge about effects of substance use on specific features of a disease shapes perceived risk and undermines health protecting decisions. Youth navigate these issues variously including by avoiding substance use at a specific time or entirely, using while cognitively discounting risks and/or adjusting treatment outside of medical advice. Their perceptions about substance use are complex and reveal tension among choices reflecting a chronic illness frame, developmental impulses, and knowledge gaps. Delivery of targeted guidance in healthcare settings may help youth navigate this complexity and connect patient-centered goals to optimize health with health protecting behavioral decisions.


Assuntos
Consumo de Bebidas Alcoólicas/prevenção & controle , Consumo de Bebidas Alcoólicas/psicologia , Comportamentos Relacionados com a Saúde , Uso da Maconha/psicologia , Transtornos Relacionados ao Uso de Substâncias/prevenção & controle , Transtornos Relacionados ao Uso de Substâncias/psicologia , Adolescente , Adulto , Doença Crônica , Feminino , Humanos , Masculino , Guias de Prática Clínica como Assunto , Pesquisa Qualitativa
13.
J Addict Med ; 13(5): 362-365, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30688723

RESUMO

OBJECTIVES: E-cigarette use has increased dramatically among adolescents in the past 5 years alongside a steady increase in daily use of marijuana. This period coincides with a historic rise in depression and suicidal ideation among adolescents. In this study, we describe the associations between e-cigarette and marijuana use and depressive symptoms and suicidality in a large nationally representative sample of high school students. METHODS: We used data from the 2 most recent waves (2015 and 2017) of the Youth Risk Behavior Survey. Our sample (n = 26,821) included only participants with complete information for age, sex, race/ethnicity, and exposure to e-cigarettes and marijuana (89.5% of survey respondents). We performed multivariate logistic regressions to explore the associations between single or dual use of e-cigarette and marijuana and depressive and suicidal symptoms in the past year adjusting for relevant confounders. RESULTS: E-cigarette-only use was reported in 9.1% of participants, marijuana-only use in 9.7%, and dual e-cigarette/marijuana use in 10.2%. E-cigarette-only use (vs no use) was associated with increased odds of reporting suicidal ideation (adjusted odds ratio [AOR]:1.23, 95% CI 1.03-1.47) and depressive symptoms (AOR: 1.37, 95% CI 1.19-1.57), which was also observed with marijuana-only use (AOR: 1.25, 95% CI 1.04-1.50 and AOR: 1.49, 95% CI 1.27-1.75) and dual use (AOR: 1.28, 95% CI 1.06-1.54 and AOR: 1.62, 95% CI 1.39-1.88). CONCLUSIONS: Youth with single and dual e-cigarette and marijuana use had increased odds of reporting depressive symptoms and suicidality compared to youth who denied use. There is a need for effective prevention and intervention strategies to help mitigate adverse mental health outcomes in this population.

14.
Arthritis Care Res (Hoboken) ; 71(5): 591-601, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-29953741

RESUMO

OBJECTIVE: To identify behavioral health provider perspectives on gaps in mental health care for youth with rheumatologic conditions. METHODS: Social workers (n = 34) and psychologists (n = 8) at pediatric rheumatology centers in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed an online survey assessing current practices and mental health care needs of youth with rheumatologic conditions. Responses were compared to a published survey of CARRA rheumatologists (n = 119). Thematic analysis of 20 semi-structured interviews with behavioral health providers was performed. RESULTS: One-third of CARRA centers (n = 100) had no affiliated social worker or psychologist. Only 1 behavioral health provider reported current universal mental health screening at their rheumatology clinic, yet routine depression screening was supported by >85% of behavioral health providers and rheumatologists. Support for anxiety screening was higher among behavioral health providers (90% versus 65%; P < 0.01). Interviews illustrated a need for interventions addressing illness-related anxiety, adjustment/coping/distress, transition, parent/caregiver mental health, and peer support. Limited resources, lack of protocols, and patient cost/time burden were the most frequent barriers to intervention. Inadequate follow-up of mental health referrals was indicated by 52% of providers. More behavioral health providers than rheumatologists favored mental health services in rheumatology settings (55% versus 19%; P < 0.01). Only 7 social workers (21%) provided counseling/therapy, and interviews indicated their perceived underutilization of these services. CONCLUSION: Behavioral health providers indicated an unmet need for mental health interventions that address illness-related issues affecting youth with rheumatologic conditions. Implementation of mental health protocols and optimizing utilization of social workers may improve mental health care for these youth.


Assuntos
Serviços de Saúde Mental , Pediatria , Psicologia/estatística & dados numéricos , Reumatologia , Assistentes Sociais/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Reumatologistas/psicologia , Reumatologistas/estatística & dados numéricos , Assistentes Sociais/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem
16.
J Med Internet Res ; 20(12): e10647, 2018 12 21.
Artigo em Inglês | MEDLINE | ID: mdl-30578228

RESUMO

BACKGROUND: Collection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful-gap areas. OBJECTIVE: We sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions. METHODS: Clinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children's parents. Parents who viewed ARRs (n=111) were surveyed about the information's perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression. RESULTS: Parental endorsement of the value of ARRs for understanding their child's condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was "very valuable"). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00). CONCLUSIONS: Returning ARRs may foster a "virtuous cycle" of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child's chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model.


Assuntos
Tomada de Decisões/fisiologia , Medidas de Resultados Relatados pelo Paciente , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Masculino , Projetos de Pesquisa , Inquéritos e Questionários
17.
Pediatrics ; 142(4)2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30228168

RESUMO

BACKGROUND AND OBJECTIVES: Despite their medical vulnerability, youth with chronic medical conditions (YCMCs) drink at levels commensurate with healthy youth. However, information about the prevalence of alcohol use among YCMCs who take alcohol-interactive (AI) medications is scant. To address gaps and inform interventions, we quantified simultaneous exposure to alcohol use and AI medications among YCMCs, hypothesizing that AI exposure would be associated with lower alcohol consumption and mediated by perceptions of alcohol-medication interference. METHODS: Adolescents with type 1 diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention-deficit/hyperactivity disorder, or inflammatory bowel disease completed an electronic survey. We measured the prevalence of exposure to AI medications and the associations with past-year alcohol use as well as binge drinking and total consumption volume in the past 3 months using multivariate regression to estimate the odds of alcohol use given AI medication exposure and perceptions of interference. RESULTS: Of 396 youth, 86.4% were on AI medications, of whom, 35.4% reported past-year alcohol use (46.3% among those who were not on AI medications). AI medication use was associated with 43% lower odds of past-year alcohol use (adjusted odds ratio: 0.57; 95% confidence interval: 0.39-0.85) and lower total consumption (ß = -.43; SE = 0.11; P < .001). Perceptions of alcohol-medication interference partially mediated the relationship between AI medication exposure and past-year alcohol use (Sobel test P = .05). CONCLUSIONS: Many YCMCs reported using alcohol; however, drinking was less likely among those who were taking AI medications. Perceptions about alcohol-medication interference mediated the association between drinking and AI medication exposure, suggesting the potential salience of interventions that emphasize alcohol-related risks.


Assuntos
Consumo de Bebidas Alcoólicas/tratamento farmacológico , Consumo de Bebidas Alcoólicas/metabolismo , Doença Crônica/tratamento farmacológico , Interações de Medicamentos/fisiologia , Inquéritos e Questionários , Adolescente , Consumo de Bebidas Alcoólicas/epidemiologia , Doença Crônica/epidemiologia , Registros Eletrônicos de Saúde , Feminino , Humanos , Masculino
18.
Artigo em Inglês | MEDLINE | ID: mdl-29645010

RESUMO

Background: Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Methods: Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Results: Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. Conclusions: For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

19.
J Empir Res Hum Res Ethics ; 13(2): 125-138, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29471711

RESUMO

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents' preferences and intent to participate (ITP) in biobank research utilizing their child's genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences ( p < .0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.


Assuntos
Bancos de Espécimes Biológicos , Pais/psicologia , Preferência do Paciente/psicologia , Adulto , Pesquisa Biomédica , Criança , Feminino , Humanos , Consentimento Livre e Esclarecido/psicologia , Masculino , Satisfação Pessoal
20.
CSCW Conf Comput Support Coop Work ; 2017: 1320-1333, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29034371

RESUMO

Important work rooted in psychological theory posits that health behavior change occurs through a series of discrete stages. Our work builds on the field of social computing by identifying how social media data can be used to resolve behavior stages at high resolution (e.g. hourly/daily) for key population subgroups and times. In essence this approach opens new opportunities to advance psychological theories and better understand how our health is shaped based on the real, dynamic, and rapid actions we make every day. To do so, we bring together domain knowledge and machine learning methods to form a hierarchical classification of Twitter data that resolves different stages of behavior. We identify and examine temporal patterns of the identified stages, with alcohol as a use case (planning or looking to drink, currently drinking, and reflecting on drinking). Known seasonal trends are compared with findings from our methods. We discuss the potential health policy implications of detecting high frequency behavior stages.

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