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Youth decision-making involvement (DMI) in medical treatment associates with greater adherence and feelings of self-efficacy. However, little is known about youth DMI regarding medical evaluation and diagnostic procedures. Using thematic analysis of semi-structured interviews, we explored parent (n=24) and youth (n=24) perceptions of youth roles in the decision to undergo evaluation for short stature. Five themes emerged about evaluation decisions including: parents/providers were gatekeepers, some parents sought youth agreement, conversations focused on logistics, some parents gave limited information, and youth expressed anxiety. Results suggest that including youth in discussions about evaluation may alleviate anxiety and uncertainty about upcoming procedures.
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Calreticulin (CRT) was originally identified as a key calcium-binding protein of the endoplasmic reticulum. Subsequently, CRT was shown to possess multiple intracellular functions, including roles in calcium homeostasis and protein folding. Recently, several extracellular functions have been identified for CRT, including roles in cancer cell invasion and phagocytosis of apoptotic and cancer cells by macrophages. In the current report, we uncover a novel function for extracellular CRT and report that CRT functions as a plasminogen-binding receptor that regulates the conversion of plasminogen to plasmin. We show that human recombinant or bovine tissue-derived CRT dramatically stimulated the conversion of plasminogen to plasmin by tissue plasminogen activator or urokinase-type plasminogen activator. Surface plasmon resonance analysis revealed that CRT-bound plasminogen (KD = 1.8 µM) with moderate affinity. Plasminogen binding and activation by CRT were inhibited by ε-aminocaproic acid, suggesting that an internal lysine residue of CRT interacts with plasminogen. We subsequently show that clinically relevant CRT variants (lacking four or eight lysines in carboxyl-terminal region) exhibited decreased plasminogen activation. Furthermore, CRT-deficient fibroblasts generated 90% less plasmin and CRT-depleted MDA MB 231 cells also demonstrated a significant reduction in plasmin generation. Moreover, treatment of fibroblasts with mitoxantrone dramatically stimulated plasmin generation by WT but not CRT-deficient fibroblasts. Our results suggest that CRT is an important cellular plasminogen regulatory protein. Given that CRT can empower cells with plasmin proteolytic activity, this discovery may provide new mechanistic insight into the established role of CRT in cancer.
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Calreticulina , Plasminógeno , Animales , Bovinos , Humanos , Calreticulina/genética , Calreticulina/aislamiento & purificación , Calreticulina/metabolismo , Fibrinolisina/metabolismo , Plasminógeno/genética , Plasminógeno/metabolismo , Activador de Tejido Plasminógeno/metabolismo , Activador de Plasminógeno de Tipo Uroquinasa/metabolismo , Dominios Proteicos/genética , Mutación , Proteínas Recombinantes/genética , Proteínas Recombinantes/metabolismo , Técnicas de Inactivación de Genes , Línea Celular Tumoral , Neoplasias/fisiopatologíaRESUMEN
INTRODUCTION: When and how to provide condition-related information to adolescents and young adults (AYAs) with differences of sex development or sex chromosome aneuploidies (DSDs or SCAs) is largely based on anecdotal experience and lacks informed guidance. For AYAs with a DSD or SCA, having accurate information is critical for attaining optimal adjustment and well-being, participating in decision making related to treatment options, and transitioning successfully to adult health care, yet prior studies have focused exclusively on parental perspectives and not on the views of adolescents themselves. OBJECTIVE: The objective of this study was to describe unmet information needs in AYAs with a DSD or SCA and examine associations with perceived global health. METHODS: Participants were recruited from specialty clinics at Children's Hospital of Philadelphia (n = 20) and Children's Hospital Colorado (n = 60). AYAs ages 12-21 years with a DSD or SCA and a parent completed a survey assessing perceived information needs across 20 topics, importance of those topics, and global health using the PROMIS Pediatric Global Health questionnaire (PGH-7). RESULTS: AYAs had diagnoses of Klinefelter syndrome (41%), Turner syndrome (25%), and DSD (26%) and were 16.7 years (SD = 2.56) and 44% female. Parent participants were primarily mothers (81%). AYAs perceived that 48.09% of their information needs were unmet (SD = 25.18, range: 0-100). Parents perceived that 55.31% of AYAs' information needs were unmet (SD = 27.46 range: 5-100). AYAs and parents across conditions reported unmet needs related to information about transition to adult health care, financial support for medical care, and how the condition might affect the AYA's health in the future. While AYA-reported PGH-7 scores were not associated with percentage of AYA unmet information needs, parent-reported PGH-7 scores were (r = -.46, p < .001), such that lower parent-reported global health was associated with higher percentage of AYA unmet information needs. DISCUSSION/CONCLUSION: On average, parents and AYAs perceived that half of AYAs' information needs were unmet, and a higher percentage of AYA unmet information needs was associated with lower perceived global health. The frequency of unmet needs in this sample of AYAs reflects an opportunity for improvement in clinical care. Future research is needed to understand how education to children and AYAs unfolds as they mature and to develop strategies to address the information needs of AYAs with a DSD or SCA, promote well-being, and facilitate AYA engagement in their own health care.
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Neoplasias , Humanos , Femenino , Adolescente , Adulto Joven , Niño , Masculino , Neoplasias/terapia , Estado de Salud , Desarrollo Sexual , Cromosomas Sexuales , AneuploidiaRESUMEN
OBJECTIVE: To examine how height and youth as well as parenting characteristics associate with quality of life (QoL) and self-esteem among healthy youth undergoing growth evaluation with growth hormone (GH) testing. STUDY DESIGN: Healthy youth, aged 8-14 years, undergoing provocative GH testing, and a parent completed surveys at or around the time of testing. Surveys collected demographic data; youth and parent reports of youth health-related QoL; youth reports of self-esteem, coping skills, social support, and parental autonomy support; and parent reports of perceived environmental threats and achievement goals for their child. Clinical data were extracted from electronic health records. Univariate models and multivariable linear regressions were used to identify factors associated with QoL and self-esteem. RESULTS: Sixty youth (mean height z score -2.18 ± 0.61) and their parents participated. On multivariable modeling, youth perceptions of their physical QoL associated with higher grade in school, greater friend and classmate support, and older parent age; youth psychosocial QoL with greater friend and classmate support, and with less disengaged coping; and youth height-related QoL and parental perceptions of youth psychosocial QoL with greater classmate support. Youth self-esteem associated with greater classmate support and taller mid-parental height. Youth height was not associated with QoL or self-esteem outcomes in multivariable regression. CONCLUSIONS: Perceived social support and coping skills, rather than height, were related to QoL and self-esteem in healthy short youth and may serve as an important potential area for clinical intervention.
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Hormona de Crecimiento Humana , Calidad de Vida , Adolescente , Niño , Humanos , Adaptación Psicológica , Calidad de Vida/psicología , Encuestas y CuestionariosRESUMEN
INTRODUCTION: This study aimed to describe adolescent, parent, and clinician ideas for enhancing adolescent decision-making involvement (DMI) during clinic visits for chronic illness. METHOD: Adolescents who recently attended a follow-up visit for a chronic illness, their parents, and clinicians were interviewed. Participants completed semistructured interviews; transcripts were coded and analyzed in NVivo. Responses to questions about ideas to increase adolescent DMI were reviewed and sorted into categories and themes. RESULTS: There were five themes: (1) adolescents need to understand their condition and regimen, (2) adolescents and parents should prepare before the visit, (3) clinicians and adolescents should have one-on-one time, (4) opportunities for condition-specific peer support would be helpful, and (5) clinicians and parents should engage in specific communication behaviors. DISCUSSION: Findings from this study highlight potential clinician-, parent-, and adolescent-focused strategies for enhancing adolescent DMI. Clinicians, parents, and adolescents may need specific guidance on how to enact new behaviors.
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Instituciones de Atención Ambulatoria , Toma de Decisiones , Humanos , Adolescente , Enfermedad Crónica , Padres , Atención AmbulatoriaRESUMEN
Importance: Despite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups. Objective: To characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences. Design, Setting, and Participants: Cross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children's hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications and a parent/caregiver. Data were analyzed from May 2021 to June 2022. Main Outcomes and Measures: Single-item measure of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey. Results: Fifty-six of 63 eligible patients enrolled in the study (88.9%) with 53 AYA-parent dyads. Median (IQR) patient age was 17.8 (15.8-19.0) years; 34 (64.2%) patients were male, and 40 patients (75.5%) identified as White and 13 patients (24.5%) identified as members of a racial or ethnic minority group or multiracial. The greatest proportion of AYA participants (24 of 53 participants [45.3%]) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (18 of 51 participants [35.3%]) preferred they and physician(s) make shared medical decisions on behalf of their AYA, representing AYA-parent decision-making discordance (χ2 = 11.7; P = .01). Most AYA participants stated a preference to discuss adverse effects or risks of treatment (46 of 53 participants [86.8%]), procedural and/or surgical details (45 of 53 participants [84.9%]), impact of condition on daily activities (48 of 53 participants [90.6%]), and their prognosis (42 of 53 participants [79.2%]). More than half of AYAs preferred to be involved in end-of-life decisions if very ill (30 of 53 participants [56.6%]). Longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD] 4.3 [1.4] in New York Heart Association class III or IV vs 2.8 [1.8] in New York Heart Association class I or II; t-value = 2.7; P = .01) were associated with a preference for more active, patient-led decision-making. Conclusions and Relevance: In this survey study, most AYAs with advanced heart disease favored active roles in medical decision-making. Interventions and educational efforts targeting clinicians, AYAs with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses.
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Etnicidad , Insuficiencia Cardíaca , Niño , Humanos , Masculino , Adolescente , Adulto Joven , Femenino , Estudios Transversales , Grupos Minoritarios , Padres , MuerteRESUMEN
OBJECTIVE: Boys outnumber girls in short stature evaluations and growth hormone treatment despite absence of gender differences in short stature prevalence. Family views on short stature influence medical management, but gender-based analysis of these views is lacking. This study explored endocrine patients' and their parents' perceptions of short stature and its impact on quality of life by patient gender. METHODS: Patients aged 8 to 14 years undergoing provocative growth hormone testing and 1 parent each completed semistructured interviews. Clinical data were extracted by chart review. RESULTS: Twenty-four patient-parent dyads (6 female patients, 22 mothers; predominantly non-Hispanic White) participated. Six major themes emerged: (1) patients' perceptions of their short stature were similar by gender, (2) physical experiences of short stature were similar by gender, (3) social experiences of short stature were both similar and different by gender, (4) parental perceptions of short stature as a factor limiting their child's functionality were similar by gender, (5) concern about societal stigma related to short stature arose for both genders, and (6) patients' perceptions of parental messaging about the import of their short stature were similar by gender. CONCLUSION: Our data reveal more similarities than differences between genders in patient perceptions and patient and parent-reported experiences of short stature. Worry about stature-related stigma was noted for patients of both genders. Parental messaging about short stature emerged as an important area to explore further by patient gender. Our findings suggest that clinicians should be wary of making gender or stigma-based assumptions when evaluating children with short stature.
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Enanismo , Hormona de Crecimiento Humana , Niño , Femenino , Humanos , Masculino , Enanismo/tratamiento farmacológico , Enanismo/psicología , Hormona del Crecimiento , Padres/psicología , Calidad de Vida , Estigma Social , Sexismo , EstaturaRESUMEN
BACKGROUND: Enrolling children in clinical trials typically requires parental or guardian permission and, when appropriate, child assent. Aligning requirements across jurisdictions would facilitate multisite pediatric trials. Guidance from the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) is the best candidate for a global standard but would benefit from additional specification. METHODS: Ethical analysis of ICH guidance for permission and assent for pediatric trials, with recommendations for clarification. RESULTS: ICH guidance regarding permission and assent would be enhanced by additional detail in the following areas: (1) what information should be provided to parents, guardians, and children considering a trial, and how that information should be provided; (2) the definition of "assent," the criteria for when assent should be required, and the need to include children in discussions even when assent is not mandated; (3) criteria for requiring children's signatures indicating agreement; (4) greater specificity regarding children's right to decline or withdraw; and (5) clarification of when children's wish to decline or withdraw from participation may be overridden and of what the overriding process should entail. CONCLUSION: ICH guidance provides a global standard for decision making regarding children's participation in trials. Several clarifications would facilitate the conduct of multinational pediatric research. IMPACT: Enrolling children in clinical trials requires the permission of a parent/guardian ± the assent of the minor. Differing global regulatory requirements for enrolling children complicate the conduct of multicenter and multinational trials. The authors identify points of ambiguity and/or contradiction in the International Council for Harmonization guidelines and offer recommendations for a common ethical platform for conducting global pediatric research.
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Niño , Consentimiento Informado , Participación del Paciente , Humanos , Participación del Paciente/legislación & jurisprudencia , Ensayos Clínicos como AsuntoRESUMEN
Background: Advanced practice providers (APPs) play important roles in enrolling, educating, and caring for patients in clinical trials. However, much remains unknown about the role of APPs in managing adverse events (AEs) in early (phase I to II) clinical trials. In this study, we assessed the outpatient management of grade 3 to 4 AEs by APPs in early trials and characterized the workflow of our APP Phase I to II Fast Track (FT) Clinic. Patients and Methods: We retrospectively reviewed records of patients with advanced or metastatic solid tumors enrolled in phase I to II clinical trials who were seen by APPs from September 2017 to August 2018 in the APP phase I to II FT clinic in the Department of Investigational Cancer Therapeutics. Results: A total of 808 patients enrolled in 159 clinical trials were seen in 2,697 visits (median 3 visits per patient; range 1-28) by 10 APPs. Treatment was interrupted in 6.9% of visits, and grade 3 to 4 AEs were seen in 5.4% of visits; however, patients from 1.4% of visits were sent to the emergency center (EC) and/or admitted. Patients referred to the EC and/or admitted were more likely to have baseline hypoalbuminemia, high lactate dehydrogenase, and poor Eastern Cooperative Oncology Group performance status (i.e., ECOG > 1; p < .001). There were no associations between EC referral and gender, APP years of experience, or type of treatment. Conclusions: The APP Phase I to II FT Clinic has an important role in the management of AEs by APPs in early clinical trials in the outpatient setting, potentially avoiding EC visits and admissions.
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Parents are important for the development and maintenance of regulatory control. The current longitudinal study examined associations between parental coercion and autonomy support and impulse control in 117 youth (ages 8-16; Mage= 12.87, SD=2.53; 44% male) with Type 1 diabetes and explored whether youth negative affect mediated these associations. Parental coercion (but not autonomy support) was concurrently associated with lower impulse control and higher negative affect within individuals. Increases in youth negative affect partially mediated the within-person association between parental coercion and impulse control. These findings suggest that parent-directed interventions to reduce parental coercion may be most beneficial for impulse control if combined with youth-directed interventions to help them regulate negative affect. Replication of the current findings in a larger sample of youth with and without a chronic illness is needed to address the theoretical and empirical importance of negative affect as a potential mechanism through which parental coercion impacts youth impulsivity.
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While multiple advances in mass spectrometry (MS) instruments have improved qualitative and quantitative proteome analysis, more reliable front-end approaches to isolate, enrich, and process proteins ahead of MS are critical for successful proteome characterization. Low, inconsistent protein recovery and residual impurities such as surfactants are detrimental to MS analysis. Protein precipitation is often considered unreliable, time-consuming, and technically challenging to perform compared to other sample preparation strategies. These concerns are overcome by employing optimal protein precipitation protocols. For acetone precipitation, the combination of specific salts, temperature control, solvent composition, and precipitation time is critical, while the efficiency of chloroform/methanol/water precipitation depends on proper pipetting and vial manipulation. Alternatively, these precipitation protocols are streamlined and semi-automated within a disposable spin cartridge. The expected outcomes of solvent-based protein precipitation in the conventional format and using a disposable, two-stage filtration and extraction cartridge are illustrated in this work. This includes the detailed characterization of proteomic mixtures by bottom-up LC-MS/MS analysis. The superior performance of SDS-based workflows is also demonstrated relative to non-contaminated protein.
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Proteoma , Proteómica , Cromatografía Liquida/métodos , Proteoma/análisis , Proteómica/métodos , Solventes , Espectrometría de Masas en TándemRESUMEN
Recombinant human growth hormone (rhGH) is prescribed to youth with growth hormone deficiency (GHD) to support normal growth and ensure healthy physical development, and to youth without GHD to address height concerns. Perceptions of youth involvement in rhGH treatment decisions have not been explored. This study aimed to examine perceptions of youth and parent roles in decisions around rhGH treatment. Youth (n = 22, 11.5 ± 2.0 years) who had undergone evaluation for short stature and their parents (n = 22) participated in semi-structured interviews after stimulation test results had been received. Interviews revealed the following themes: 1) parent provided youth with support; 2) parent facilitated youth's decision-making involvement; 3) youth had no role or did not remember their role; and 4) youth did not remember conversations with their parents or providers. Parents facilitated their children's involvement by sharing information and seeking their opinions. Whereas some participants described youth as having a substantial decision-making role, not all youth felt they were involved, and some youth could not recall conversations about rhGH. Parents can bolster youth involvement by having conversations using developmentally appropriate language, which is critical to youth feeling empowered and developing efficacy over their own care.
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In the last decade, there has been a robust increase in research using financial incentives to promote healthy behaviors as behavioral economics and new monitoring technologies have been applied to health behaviors. Most studies of financial incentives on health behaviors have focused on adults, yet many unhealthy adult behaviors have roots in childhood and adolescence. The use of financial incentives is an attractive but controversial strategy in childhood. In this review, we first propose 5 general considerations in designing and applying incentive interventions to children. These include: 1) the potential impact of incentives on intrinsic motivation, 2) ethical concerns about incentives promoting undue influence, 3) the importance of child neurodevelopmental stage, 4) how incentive interventions may influence health disparities, and 5) how to finance effective programs. We then highlight empirical findings from randomized trials investigating key design features of financial incentive interventions, including framing (loss vs gain), timing (immediate vs delayed), and magnitude (incentive size) effects on a range of childhood behaviors from healthy eating to adherence to glycemic control in type 1 diabetes. Though the current research base on these subjects in children is limited, we found no evidence suggesting that loss-framed incentives perform better than gain-framed incentives in children and isolated studies from healthy food choice experiments support the use of immediate, small incentives versus delayed, larger incentives. Future research on childhood incentives should compare the effectiveness of gain versus loss-framing and focus on which intervention characteristics lead to sustained behavior change and habit formation.
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Conductas Relacionadas con la Salud , Motivación , Adolescente , Adulto , Niño , Conducta Infantil , Economía del Comportamiento , Estado de Salud , HumanosRESUMEN
PURPOSE: The purpose of this qualitative study was to explore parent and youth perspectives of the decision-making process to start continuous glucose monitoring (CGM). METHODS: Youth with type 1 diabetes and their parents were assessed with semistructured interviews before adding CGM to their regimen and 2 months after device initiation. Interviews focused on parent, youth, and provider decision-making roles and suggestions for enhancing youth decision-making involvement (DMI). Data were coded and analyzed using thematic analysis. RESULTS: Youth (N = 41; 13.7 ± 2.9 years) were categorized into decision-making roles: (1) youth primary decision maker (54.8%), (2) youth primary decision maker with parental influence (14.3%), (3) parent primary decision maker with youth agreement (26.2%), and (4) parent primary decision maker without youth agreement (4.8%). Participants described that clinicians provided information, recommended CGM, and gave support. Recommendations to enhance youth DMI included that youth should ask questions, express opinions, and do their own research. Providers should give unbiased information and use visual aids (eg, show the device and videos) to engage youth. CONCLUSIONS: Participants agreed that whereas youth should have a primary role in the decision about CGM, parental and provider support is critical. Parents and providers can facilitate dialogue by directly engaging with youth about their thoughts, feelings, and concerns. Provider use of visual aids may enhance youth engagement and expectations.
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Automonitorización de la Glucosa Sanguínea , Diabetes Mellitus Tipo 1 , Adolescente , Glucemia , Humanos , Relaciones Padres-Hijo , PadresRESUMEN
OBJECTIVE: Continuous glucose monitoring (CGM) has become increasingly popular among youth with type 1 diabetes (T1D). Used with CGM, remote monitoring (RM) gives caregivers real-time access to patients' glucose values. Whereas RM may safeguard against hypo- and hyperglycemic events, little is known about how older children and adolescents, who are striving for independence, and their parents view the RM aspect of CGM. The goal of this study was to describe and explore parent and youth perceptions of RM. METHODS: Youth with T1D and their parents participated separately in semi-structured interviews 2 months after starting CGM. Questions focused on decisions to use and experiences with RM. RESULTS: Analysis of 43 parents and 41 youth (13.79 years ± 2.82) interviews revealed four themes, with 10 subthemes. Seven subthemes emerged in parent and youth interviews, and three emerged exclusively in parent interviews. The overarching themes included the impact of RM on (1) peace-of-mind, (2) parental anxiety, (3) communication; and addressed (4) technological limitations that prevented some from using RM. Regardless of youth age, youth and parents found comfort in parental knowledge of glucose values and parental abilities to assist youth (e.g., giving reminders to eat). Whereas RM could lead to conflicts due to excessive communication (e.g., texting), conflicts could be resolved through iterative parent-youth conversations. CONCLUSION: RM may facilitate youth independence by providing a way for them to stay connected to their support system while acquiring developmentally appropriate skills. However, families should have iterative discussions about boundaries to mitigate parental over-involvement.
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Diabetes Mellitus Tipo 1 , Adolescente , Glucemia , Automonitorización de la Glucosa Sanguínea , Cuidadores , Niño , Diabetes Mellitus Tipo 1/tratamiento farmacológico , Humanos , PadresRESUMEN
INTRODUCTION: The objective of this study was to describe interruptions in the pediatric ambulatory setting and to assess their impact on perceived physician communication, patient satisfaction and recall of provided physician instructions. METHODS: An observational study was performed at the Children's Hospital of Philadelphia, Pediatric Gastroenterology clinic. Participation consisted of video recording the clinic visit and the caregiver completed post-visit surveys on communication and satisfaction. Video recordings were coded for interruptions, which were divided into 3 main categories: Visit Associated, Pediatric Associated, and Unanticipated. An interruption rate was calculated and correlated with the following outcome variables to assess the impact of interruptions: caregiver satisfaction, caregiver perception on the quality of physician communication, and caregiver instruction recall. RESULTS: There were 675 interruptions noted in the 81 clinic visits, with an average of 7.96 (σ = 7.68) interruptions per visit. Six visits had no interruptions. The Patient was the most frequent interrupter. Significantly higher interruption rates occurred in clinic visits with younger patients (<7 years old) with most of the interruptions being Pediatric Associated interruptions. There was minimal correlation between the clinic visit interruption rate and caregiver satisfaction with the communication, caregiver perception of quality of communication, or caregiver instruction recall rate. CONCLUSION: The effect of interruptions on the pediatric visit remains unclear. Interruptions may be part of the communication process to ensure alignment of the patient's agenda. Additional studies are needed to help determine the impact of interruptions and guide medical education on patient communication.
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Atención Ambulatoria , Niño , Preescolar , Humanos , Masculino , Atención Primaria de Salud/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
The tumor microenvironment (TME) is now being widely accepted as the key contributor to a range of processes involved in cancer progression from tumor growth to metastasis and chemoresistance. The extracellular matrix (ECM) and the proteases that mediate the remodeling of the ECM form an integral part of the TME. Plasmin is a broad-spectrum, highly potent, serine protease whose activation from its precursor plasminogen is tightly regulated by the activators (uPA, uPAR, and tPA), the inhibitors (PAI-1, PAI-2), and plasminogen receptors. Collectively, this system is called the plasminogen activation system. The expression of the components of the plasminogen activation system by malignant cells and the surrounding stromal cells modulates the TME resulting in sustained cancer progression signals. In this review, we provide a detailed discussion of the roles of plasminogen activation system in tumor growth, invasion, metastasis, and chemoresistance with specific emphasis on their role in the TME. We particularly review the recent highlights of the plasminogen receptor S100A10 (p11), which is a pivotal component of the plasminogen activation system.
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Strength-based approaches to youth development have been tested in community settings and are related to improvements in social, health, and academic realms. However, little is known about similar approaches to enhance parent-teen communication (PTC) in pediatric primary care. The goal of this study was to test the feasibility and acceptability of an intervention to facilitate parent-teen communication about teen strengths. Intervention materials were developed based on a literature review, expert consultation, and feedback from stakeholders. The final intervention was a parent-directed booklet and a parent-teen discussion activity. At the well-adolescent visit (WAV), dyads received an orientation to the materials and were instructed to complete the discussion activity within 2 weeks of the WAV. Health Care Providers verbally endorsed the materials and instructed parents to read the booklet and complete the discussion activity with their teens. Acceptability was assessed at 2-week and 2-month follow-ups. Parent-adolescent dyads from an urban, pediatric primary care practice were enrolled with half assigned to the treatment group. Those in the treatment group (60 dyads) are the focus of this paper. Youth were 13-15 years old, 55% female, and 66% Black. Most participating parents (97%) were female. Fidelity was ≥ 88% for delivery of each of the intervention components. Fifty-four of the 60 parents in the intervention group completed the 2-week call. Of those 54 parents, 96% read the booklet and 62% found the booklet either extremely or very helpful. The majority of parents (67%) and teens (72%) reported that the discussion activity was excellent or very good. Analysis of qualitative data also provided rich insight into the participants' experiences with the intervention materials. Overall results suggest that an intervention to promote PTC about teen strengths is feasible and acceptable to parents and teens within primary care.
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Relaciones Padres-Hijo , Padres , Adolescente , Niño , Comunicación , Estudios de Factibilidad , Femenino , Humanos , Masculino , Atención Primaria de SaludRESUMEN
Background: Racial-ethnic disparities in diabetes technology use are well documented in young adults (YA) with type 1 diabetes (T1D), but modifiable targets for intervention still need to be identified. Our objective was to explore YA perspectives on technology access and support in routine clinical care. Materials and Methods: Participants were YA with T1D of Hispanic or non-Hispanic Black race-ethnicity from pediatric and adult endocrinology clinics in the Bronx, NY. We conducted semistructured individual interviews to explore how health care and personal experiences affected technology use. Interviews were audio-recorded and transcribed for analysis. We used a modified inductive coding approach with two independent coders and iterative coding processes to improve data reliability and validity. Results: We interviewed 40 YA with T1D: mean age 22 years; 62% female; 72% Medicaid insured; 72% Hispanic; 28% non-Hispanic Black; and mean hemoglobin A1C 10.3%. Themes were categorized into potentially exacerbating and alleviating factors of racial-ethnic disparities in technology use. Exacerbating factors included perceptions that providers were gatekeepers of information and prescription access to technology, providers did not employ shared decision making for use, and YA biases against technology were left unaddressed. Alleviating factors included provider optimism and tailoring of technology benefits to YA needs, and adequate Medicaid insurance coverage. Conclusions: Our results reveal potential intervention targets at the provider level to increase technology uptake among underrepresented YA with T1D. Diabetes health care providers need to be aware of inadvertent withholding of information and prescription access to technology. Provider approaches that address YA technology concerns and promote shared decision making help to mitigate racial/ethnic disparities in technology use.
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Diabetes Mellitus Tipo 1 , Adulto , Niño , Etnicidad , Femenino , Disparidades en Atención de Salud , Humanos , Masculino , Grupos Raciales , Reproducibilidad de los Resultados , Tecnología , Estados Unidos , Adulto JovenRESUMEN
The goal of this study was to characterize trajectories of continuous glucose monitoring (CGM) use in youth 5-12 weeks after starting CGM and examine what factors differentiate between the trajectory groups. Parent-youth dyads completed assessments before starting CGM. Days of CGM use between weeks 5 and 12 were accessed through cloud-based data repository. Three patterns of use were observed among 96 youth (mean age 13.4 ± 2.75 years; 75% white): sustained high, declining, and sustained low. Youth in the sustained low and declining groups were more likely than those in the sustained high group to use a receiver (versus smart phone). There were no differences between the trajectory groups with respect to age, race, ethnicity, income, or insulin regimen. Future research should examine trajectory groups for a longer follow-up period and identify baseline factors that reliably predict which youth will have low or declining CGM use over time.