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INTRODUCTION: Early recognition and prompt, appropriate management may reduce mortality in patients with sepsis. The Surviving Sepsis Campaign's guidelines suggest the use of dynamic measurements to guide fluid resuscitation in sepsis; although these methods are rarely employed to monitor cardiac output in response to fluid administration outside intensive care units. This service evaluation investigated the introduction of a nurse led protocolised goal-directed fluid management using a non-invasive cardiac output monitor to the standard assessment of hypotensive ward patients. METHODS: We introduced the use of a goal-directed fluid management protocol into our critical care outreach teams' standard clinical assessment. Forty-nine sequential patients before and thirty-nine after its introduction were included in the assessment. RESULTS: Patients in the post-intervention cohort received less fluid in the 6 h following outreach assessment (750mls vs 1200mls). There were no differences in clinical background or rates of renal replacement therapy, but rates of invasive and non-invasive ventilation were reduced (0% vs 31%). Although the groups were similar, the post-intervention patients had lower recorded blood pressures. CONCLUSION: IV fluid therapy in the patient with hypotension complicating sepsis can be challenging. Excessive IV fluid administration is commonplace and associated with harm, and the use of advanced non-invasive haemodynamic monitoring by trained nurses can provide objective evaluation of individualised response to treatment. Avoiding excessive IV fluid and earlier institution of appropriate vasopressor therapy may improve patient outcomes. IMPLICATIONS FOR CLINICAL PRACTICE: Adoption of dynamic measures of cardiac output outside of critical care by trained critical care nurses is feasible and may translate into improved patient outcomes. In hospitals with a nurse-led critical care outreach service, consideration should be given to such an approach.
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Fluidoterapia , Hipotensión , Humanos , Fluidoterapia/métodos , Fluidoterapia/normas , Femenino , Masculino , Persona de Mediana Edad , Hipotensión/fisiopatología , Hipotensión/etiología , Anciano , Monitoreo Fisiológico/métodos , Monitoreo Fisiológico/normas , Sepsis/complicaciones , Sepsis/fisiopatología , Cuidados Críticos/métodos , Cuidados Críticos/normas , Estudios de Cohortes , Unidades de Cuidados Intensivos/organización & administración , Unidades de Cuidados Intensivos/estadística & datos numéricos , Gasto Cardíaco/fisiología , AdultoRESUMEN
The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome. Usage data for the SMART portal were good, with patients demonstrating better engagement than parents. Results from the trial demonstrated improvement in medication adherence ( M = 24%-31%; t = 7.94, P < 0.05) and self-management barriers as well as trends in health-related quality of life and symptoms. The SMART portal is a feasible digital therapeutic self-management tool for pediatric IBD that demonstrated preliminary efficacy in this pilot trial. Large, controlled trials are needed to definitively determine the clinical efficacy of this tool.
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Enfermedades Inflamatorias del Intestino , Automanejo , Humanos , Adolescente , Niño , Calidad de Vida , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Cumplimiento de la Medicación , Resultado del Tratamiento , Estudios de FactibilidadRESUMEN
PURPOSE: To describe the process of developing, and evaluating the feasibility and acceptability of, an EMR-based transition readiness assessment. DESIGN AND METHODS: A Cerner-based version of the UNC TRxANSITION Index was implemented across four pediatric subspecialty clinics: epilepsy, inflammatory bowel disease; type 1 diabetes, oncology survivorship. The feasibility was assessed by each's clinic's ability to meet form completion goals and their assessment rate. Acceptability was assessed via family refusal rate, a staff-completed feedback questionnaire, and whether the form was adopted into routine clinical care after completion of the pilot study. RESULTS: All clinics met form completion goals (N = 10/clinic). The assessment rate ranged from 66 to 100% across clinics. No families refused completion of the form. Most staff (70%) reported completing the form in <10 min. Staff reported on challenges experienced and provided recommendations to streamline administration and enhance clinical care. All staff reported the form helped them identify knowledge gaps in their patients. Two clinics continued using the form following completion of the pilot study. CONCLUSIONS: Implementation was most feasible in clinics that were well-staffed and had lengthier patient visits, however, time and staff resources were the biggest challenges to implementation across clinics. Based on staff feedback to improve efficiency and developmentally-tailor assessment, the form will be divided into Beginner Skills and Advanced Skills. PRACTICAL IMPLICATIONS: Integrating transition readiness assessment into the EMR has the potential to improve clinical care by facilitating staff's ability to efficiently identify knowledge gaps in their transition-aged patients and intervene.
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Registros Electrónicos de Salud , Enfermedades Inflamatorias del Intestino , Niño , Humanos , Anciano , Proyectos PilotoRESUMEN
Black children are exposed to police violence at alarming rates. Such stress impacts development and treatment of physical health problems. In the current discourse, we introduce STYLE (Self-examination, Talk about community-police relations and racism, Yield space and time to anti-racism work, Learn about how structural racism impacts child health, Evaluate policies and practices through an anti-racism lens). STYLE offers a framework through which professionals in pediatric psychology can engage in anti-racist work across contexts from clinical care to academic and advocacy settings. Pediatric psychologists have a responsibility to be on the frontline as interventionists, educators, researchers, organizers, and advocates for racial justice through anti-racism practices. The current paper introduces STYLE in clinical care, community service, training/supervision, and academic and advocacy contexts. Case examples are provided. Professionals in pediatric psychology must first focus on changing their STYLE to promote individual and infrastructural change consistent with anti-racism work.
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Racismo , Negro o Afroamericano/psicología , Niño , Humanos , Policia/psicología , Psicología Infantil , ViolenciaRESUMEN
PURPOSE: To identify barriers that transcend multiple adult care specialties and identify potential solutions. DESIGN AND METHODS: Twenty-one adult care providers practicing in the specialty areas of internal medicine, family medicine, gastroenterology, endocrinology, and neurology participated in one of six semi-structured focus group interviews. Data were coded and analyzed according to the Socio-ecological Model of Adolescent/Young Adult Readiness for Transition (SMART). RESULTS: Three themes and one subtheme emerged from the data. These fell within the beliefs/expectations, knowledge, access/insurance, and relationships (subtheme) domains of the SMART model. Family beliefs/expectations regarding the provider role, difficulty accessing reliable information, and limited access to mental health and behavioral providers reportedly affect providers' ability to provide optimal health care. CONCLUSIONS: Adult providers identified several barriers affecting their ability to care for newly transferred patients. Increased education of families and improved methods of communication between providers were recommended. Barriers related to access and insurance are common and require larger systems-level collaborations between health care systems and payor sources. PRACTICAL IMPLICATIONS: Some recommendations (e.g., educating families on the distinct roles of the PCP vs. specialist, highlighting new treatment opportunities in adult care, conveying trust and endorsing the new provider), represent concrete steps pediatric providers can immediately take to improve transfer. Other steps will require forging bridges across the pediatric and adult care world to expand patient access to medical, mental health, and behavioral services.
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Transición a la Atención de Adultos , Adolescente , Niño , Comunicación , Atención a la Salud , Grupos Focales , Humanos , Investigación Cualitativa , Especialización , Adulto JovenRESUMEN
OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.
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Enfermedades Inflamatorias del Intestino , Telemedicina , Transición a la Atención de Adultos , Adolescente , Humanos , Enfermedades Inflamatorias del Intestino/terapia , Estudios Prospectivos , Sudeste de Estados Unidos , Adulto JovenRESUMEN
CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.
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Aflicción , Neoplasias , Adaptación Psicológica , Niño , Femenino , Pesar , Humanos , PadresRESUMEN
OBJECTIVE: The current study sought to obtain a longitudinal perspective of and quantitatively assess barriers to medication adherence experienced by college students with attention-deficit/hyperactivity disorder (ADHD). Thus, we examined semester-long trends in barriers to adherence in addition to the relationships between barriers and medication adherence and barriers and quality of life. METHODS: Participants were college students diagnosed with ADHD. Throughout a Fall semester, participants completed 4 sets of online questionnaires and attended 4 in-person visits, which included pill counts and written questionnaires. Participants completed measures assessing barriers to adherence and health-related quality of life, and adherence was measured via pill counts. Mean values of barriers, adherence rate, and quality of life were used for all analyses. RESULTS: Of the 45 students surveyed, mean adherence rate was 56.70%, and 84.45% of participants reported at least 1 barrier. Across the semester, participants reported experiencing an average of 3.07 barriers, and a consistent barrier reported was not realizing when pills run out. Although reported barriers were unrelated to adherence, the results showed that barriers were associated with lowered quality of life, specifically lower overall quality of life in addition to lower emotional functioning, psychosocial health, school functioning, and physical functioning. CONCLUSION: Barriers to adherence appear to be common in college students with ADHD, and certain barriers are consistent with the planning difficulties observed in individuals with ADHD. Because students experiencing more barriers had lower quality of life, interventions are needed to improve students' overall illness management experience.
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Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Calidad de Vida , Estudiantes/estadística & datos numéricos , Adolescente , Adulto , Femenino , Humanos , Estudios Longitudinales , Masculino , Universidades , Adulto JovenRESUMEN
OBJECTIVES: Deficits in the preparation of patients with inflammatory bowel disease (IBD) who are transitioning to adult care are known yet studies presenting outcome data of transition interventions in IBD are lacking. We present data evaluating the impact of a transition coordinator on behavioral and clinical transition outcomes. METHODS: A retrospective chart review identified 135 patients who had met with our transition coordinator and completed the Transition Readiness Assessment Questionnaire before, and 1 year after, the intervention. Changes in transition readiness, self-management skill acquisition, and clinical outcomes (eg, number of patients transferred vs "bounced back" to pediatrics, percentage of patients over age 21, changes in disease remission) were examined and compared with patients who received no intervention. RESULTS: Intervention participants demonstrated a significant increase in transition readiness, F(1, 134)â=â24.34, Pâ<â0.001, and self-management skill acquisition, F(1, 134)â=â5.61, Pâ<â0.05. The percentage of patients in remission significantly increased from pre- to post-intervention, χ(134)â=â9.03, Pâ<â0.01. There were no significant changes in the comparison population (Psâ>â0.05). Following implementation of our programming, the percentage of patients over age 21 decreased by 33.07%. CONCLUSIONS: A 1-time transition coordinator-led intervention improved adolescent transition readiness and acquisition of self-management skills. The proportion of young adult patients retained in pediatric care was reduced. Benefits of hiring a transition coordinator are discussed.
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Enfermedades Inflamatorias del Intestino/terapia , Autocuidado , Transición a la Atención de Adultos , Adolescente , Femenino , Humanos , Masculino , Registros Médicos , Estudios Retrospectivos , Medicina Estatal , Encuestas y Cuestionarios , Reino Unido , Adulto JovenRESUMEN
OBJECTIVE: To examine the frequency of medication nonadherence using both objective and subjective data and to compare the differences between these measures in adolescents and young adults (AYAs) with attention-deficit hyperactivity disorder (ADHD). METHOD: Fifty-four participants enrolled. Frequency (mean percent of prescribed doses not taken) of nonadherence was measured using subjective (visual analog scale) and objective (pill count and electronic monitoring) methods. Differences between measures were compared using t tests and analysis of variances. RESULTS: Objective measures showed that participants missed 40% to 43% of their prescribed doses. Contrastingly, subjective measures indicated that participants missed 25% of their prescribed doses. Frequency of nonadherence was significantly higher when relying on objective measures rather than on subjective measures (t[46] = -4.51, p < 0.01 for pill counts, and t[47] = -4.81, p < 0.01 for electronic monitoring). CONCLUSION: Nonadherence is high in AYAs with ADHD. These individuals tend to overestimate their adherence when self-reporting. Physicians should exercise caution when prescribing based on patient report of adherence and use objective measures when possible.
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Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Autoinforme/estadística & datos numéricos , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
This study investigated early indications of hypertension risk and the association of overweight and obesity in young girls from a low socioeconomic region of the rural South. 139 females (M ageâ¯=â¯8.85⯱â¯1.67â¯years) from a rural school in the Southeastern region of the United States served as participants. Body mass index was calculated based on the child's height and weight measurements (kg/m2) and resting blood pressure measurements were taken with calibrated, automatic oscillations devices. Girls who were overweight or obese were 2.81 times more likely to have a systolic blood pressure indicative of being at-risk/hypertensive (i.e., pre-hypertension and/or hypertension stage 1) than girls who were not overweight/obese. In fact, the percentage of overweight/obese girls who were at-risk/hypertensive was double that of girls who were not overweight/obese (43.2% versus 21.3%), respectively. Being overweight or obese is associated with almost three times a higher risk of hypertension than girls who are not overweight or obese.
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PURPOSE: The present study examines parents' perspectives of the experiences and challenges surrounding self-management of Attention-Deficit/Hyperactivity Disorder (ADHD) in their college students. METHODS: Participants were parents of emerging young adults with ADHD prescribed daily medication for their condition. Thirteen individual interviews were conducted using a semistructured interview script guided by the Health Belief Model. The qualitative data were analyzed via directed content analysis. RESULTS: Five themes emerged from the interviews: (1) parents are heavily involved in their child's self-management prior to college, and the abrupt transition of responsibilities is difficult for parents; (2) parents' worries about their child's self-management and functioning are exacerbated by privacy laws and poor communication from child and university; (3) volitional nonadherence is high; (4) obtaining academic accommodations is difficult; and (5) parents recommend a gradual transition, desire enhanced communication from the college, and wish for social support resources in the college setting for their children. CONCLUSIONS: Parents of college students with ADHD are distressed and frustrated by the transition to college. They express the desire to remain continually involved in their child's self-management of ADHD, but several barriers hinder their ability to do so, resulting in fear of the potential consequences on their child's functioning. This collateral information from parents regarding the challenges associated with ADHD self-management experiences in college should result in the development of comprehensive interventions to improve the quality of life in college students with ADHD.
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Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Padres/psicología , Automanejo , Estudiantes/psicología , Adulto , Humanos , Entrevistas como Asunto , Cumplimiento de la Medicación/psicología , Modelos Psicológicos , Ajuste Social , Universidades , Adulto JovenRESUMEN
PURPOSE: This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. DESIGN AND METHODS: Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered "most important for successful transition." Rankings were summarized and compared by group. RESULTS: While patients, parents, and clinicians all identified "calling the doctor about unusual changes in health" and "taking medications correctly and independently" as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed "calling the doctor about unusual changes in health" and "being knowledgeable about insurance coverage," as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. CONCLUSIONS: Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. PRACTICE IMPLICATIONS: Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.
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Continuidad de la Atención al Paciente/organización & administración , Enfermedades Inflamatorias del Intestino/terapia , Padres/psicología , Autocuidado/psicología , Transición a la Atención de Adultos/organización & administración , Adolescente , Femenino , Conductas Relacionadas con la Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Enfermedades Inflamatorias del Intestino/psicología , Masculino , Apoyo SocialRESUMEN
OBJECTIVE: To provide a systematic review of correlates of adherence to inhaled corticosteroids (ICS) in pediatric asthma across the individual, family, community, and healthcare system domains. METHODS: Articles assessing medication adherence in pediatric asthma published from 1997 to 2016 were identified using PsychINFO, Medline, and CINAHL. Search terms included asthma, compliance, self-management, adherence, child, and youth. Search results were limited to articles: 1) published in the US; 2) using a pediatric population (0-25 years old); and 3) presenting original data related to ICS adherence. Correlates of adherence were categorized according to the domains of the Pediatric Self-Management Model. Each article was evaluated for study quality. RESULTS: Seventy-nine articles were included in the review. Family-level correlates were most commonly reported (N = 51) and included socioeconomic status, race/ethnicity, health behaviors, and asthma knowledge. Individual-level correlates were second-most common (N = 37), with age being the most frequently identified negative correlate of adherence. Health care system correlates (N = 24) included enhanced asthma care and patient-provider communication. Few studies (N = 10) examined community correlates of adherence. Overall study quality was moderate, with few quantitative articles (26.38%) and qualitative articles (21.4%) referencing a theoretical basis for their studies. CONCLUSIONS: All Pediatric Self-Management Model domains were correlated with youth adherence, which suggests medication adherence is influenced across multiple systems; however, most studies assessed adherence correlates within a single domain. Future research is needed that cuts across multiple domains to advance understanding of determinants of adherence.
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Antiasmáticos/uso terapéutico , Asma/tratamiento farmacológico , Cumplimiento de la Medicación , Niño , HumanosRESUMEN
Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations. Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, Web of Science, and the Cochrane library databases were searched. Peer-reviewed English articles presenting original data on barriers to transition to adult care, focused on a specific pediatric chronic illness population, and conducted in the United States were included. Study design, population, and barriers were extracted. Barriers were categorized according to the Socioecological Model of Adolescent/Young Adult Readiness to Transition. Articles were evaluated for study quality. Results: Fifty-seven articles were included. The most common barriers to transition fell within the "Relationships" domain (e.g., difficulties letting go of long-standing relationships with pediatric providers) followed by "Access/Insurance" (e.g., difficulty accessing/finding qualified practitioners, insurance issues), and "Beliefs/Expectations" (e.g., negative beliefs about adult care). Barriers related to "Knowledge" (e.g., limited patient/caregiver knowledge about medication/illness and the transition process) and "Skills/Efficacy" (e.g., lack of self-management skills) were also common. While relationship barriers were commonly reported by all, some barriers varied by transfer status (pre- vs. posttransfer). Conclusions: Each chronic illness group experiences illness-specific challenges but certain barriers transcend chronic illness populations. Suggestions to overcome these barriers are provided.
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Enfermedad Crónica/terapia , Transición a la Atención de Adultos , Adolescente , Adulto , Humanos , Adulto JovenRESUMEN
OBJECTIVE: As youth with attention deficit hyperactivity disorder (ADHD) transition to adulthood, they must learn how to manage their ADHD treatment independently. This may be challenging because many of the skills necessary to adhere to treatment (e.g., organization, planning) are impaired in those with ADHD. Using electronic monitoring, we examine trajectories of adherence to medication in a cohort of college students with ADHD. Further, we examine the effect of transitioning to college and executive functioning on adherence. METHODS: Electronic monitors tracked adherence for 51 undergraduate students with ADHD across an academic semester. Multilevel modeling examined individual trajectories in monthly adherence and the role of transition status and self-reported executive functioning on these trajectories. RESULTS: Overall, participants adhered to 53.53% of prescribed doses. Transition status predicted the linear slope in adherence (ß = -8.95, standard error [SE] = 3.61, p < .05), with lower initial adherence among undergraduates transitioning to independence (34.17%) compared with post-transition undergraduates (67.63%; ß = 33.46, SE = 8.00, p < .001). Adherence demonstrated a curvilinear change (ß = -7.23, SE = 1.25, p < .001). It increased from the beginning of the semester to midterms before subsequently declining through the rest of the semester, including during final exams. Executive functioning did not predict adherence (ß = -.10, SE = .02, p = .54). CONCLUSION: Only half of all doses were taken as prescribed. Adolescents transitioning to independence demonstrated the lowest levels of adherence, suggesting that the transition to independence is a high-risk period for poor self-management of ADHD.
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Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Función Ejecutiva/fisiología , Cumplimiento de la Medicación/estadística & datos numéricos , Automanejo/estadística & datos numéricos , Estudiantes/estadística & datos numéricos , Adolescente , Adulto , Femenino , Humanos , Estudios Longitudinales , Masculino , Universidades/estadística & datos numéricos , Adulto JovenRESUMEN
PURPOSE: The present study explores the medication self-management experiences of adolescents with attention-deficit/hyperactivity disorder (ADHD) during their transition to young adulthood in college. METHODS: Participants were college freshmen with ADHD prescribed daily medication for their condition. Ten individual interviews were conducted using a semistructured interview script. Measures related to ADHD medication management were also completed. Qualitative data were analyzed via directed content analysis and quantitative data via descriptive statistics. RESULTS: Five themes emerged from interviews: (1) transitions to independence are often abrupt, and many adolescents lack critical self-management skills; (2) volitional nonadherence is high due to inaccurate disease beliefs, perceived academic demands, and medication side effects; (3) poor self-management negatively impacts school performance; (4) peer pressure to share medication affects social functioning and adherence; and (5) social support is greatly needed. Common barriers to adherence included "don't feel like taking medication" (90%) and "difficulties in sticking to a fixed medication schedule" (80%). CONCLUSIONS: Participants with ADHD were not prepared to manage their chronic illness independently in context of increased demands and newfound freedom, resulting in negative academic consequences. Social factors also play an influential role in ADHD self-management, particularly related to the isolation associated with sharing the medication and its side effects. Intervention programs targeting medication self-management during the transition to independence are greatly needed for young adults with ADHD as high academic performance in college is critical for future success.
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Trastorno por Déficit de Atención con Hiperactividad/tratamiento farmacológico , Cumplimiento de la Medicación/estadística & datos numéricos , Ajuste Social , Universidades , Adolescente , Factores de Edad , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
BACKGROUND: Although practice guidelines have been published for transition to adult care among general chronic illness populations and specific to pediatric inflammatory bowel disease (IBD), little is known about current transition practices in IBD care. This study presents data characterizing current transition practices as reported by a national sample of pediatric providers in the United States. METHODS: One hundred forty-one pediatric providers completed an online survey designed to assess current transition practices, barriers and challenges to developing and maintaining transition programming, and desired resources to improve transition services. RESULTS: Practices varied greatly in terms of when providers begin discussing transition and transfer, age at transfer to adult care, and patient supports provided to facilitate transition. Multiple disciplines were often involved in transition programming and 75.9% reported using objective assessment of patient transition readiness. Knowledge and application of published transition practice guidelines was limited, and few respondents reported having a written transition policy at their institution (14.2%). 99.3% of respondents reported barriers to their transition programming efforts. Additional time and instrumental supports were the most common desired resources to support transition efforts. CONCLUSIONS: Variability in IBD transition programming, practices, and policies reflect the emerging nature of clinical practice in this area. Understanding the current state of transition programming can inform future programming. Efforts to identify evidence-based practices in transition to adult care are needed.
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Continuidad de la Atención al Paciente/normas , Personal de Salud , Enfermedades Inflamatorias del Intestino/terapia , Pautas de la Práctica en Medicina/normas , Transición a la Atención de Adultos/normas , Transición a la Atención de Adultos/tendencias , Adolescente , Adulto , Niño , Preescolar , Femenino , Estudios de Seguimiento , Encuestas de Atención de la Salud , Humanos , Lactante , Recién Nacido , Masculino , Pronóstico , Calidad de la Atención de Salud , Encuestas y Cuestionarios , Estados Unidos , Adulto JovenRESUMEN
PURPOSE: Guidelines for optimal transition call for multidisciplinary teams, including psychologists, to address youth and young adults' multifactorial needs. This study aimed to characterize psychologists' roles in and barriers to involvement in transition from pediatric to adult health care. METHODS: Psychologists were invited via professional listservs to complete an online survey about practice settings, roles in transition programming, barriers to involvement, and funding sources. Participants also responded to open-ended questions about their experiences in transition programs. RESULTS: One hundred participants responded to the survey. Involvement in transition was reported at multiple levels from individual patient care to institutional transition programming, and 65% reported more than one level of involvement. Direct clinical care (88%), transition-related research (50%), and/or leadership (44%) involvement were reported, with 59% reporting more than one role. Respondents often described advocating for their involvement on transition teams. Various sources of funding were reported, yet, 23% reported no funding for their work. Barriers to work in transition were common and included health care systems issues such as poor coordination among providers or lack of a clear transition plan within the clinic/institution. CONCLUSIONS: Psychologists assume numerous roles in the transition of adolescents from pediatric to adult health care. With training in health care transition-related issues, psychologists are ideally positioned to partner with other health professionals to develop and implement transition programs in multidisciplinary settings, provided health care system barriers can be overcome.
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Pediatría , Rol Profesional , Psicología , Transición a la Atención de Adultos , Salud del Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
BACKGROUND: The current transition literature is a fragmented assortment of studies examining select subsections of transition stakeholders. METHODS: Adolescent/young adult patients with IBD (40% transferred to adult care), parents, and health providers (53.8% adult providers) participated in 1 of 6 focus group interviews focused on concerns and needs surrounding transition to adult care. Data were analyzed through directed content analysis. RESULTS: Transition needs/concerns focused on (1) losing relationships with pediatric providers, (2) perceptions of poorer quality care from adult providers, (3) high parent involvement preventing the development of youth self-management skills, and (4) finances and insurance. Suggestions to improve transition to adult care included the following: (1) meeting alone with adolescents during appointments, (2) providing concrete guidance on how/when to transition responsibility, and (3) increasing accountability for adolescents. Recommendations to improve transfer included the following: (1) providing more information about the transfer process and adult providers, (2) obtaining peer support and mentoring, and (3) setting goals and deadlines for transfer. CONCLUSIONS: Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.