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1.
Pediatr Blood Cancer ; : e30999, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38622789

RESUMEN

BACKGROUND: Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making. PROCEDURE: Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers. Semi-structured qualitative interviews were conducted with AYAs and their caregivers, and online crowdsourcing was used with SCD providers. Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. RESULTS: Fourteen AYAs (Mage  = 21 years, 57% male, 93% non-Hispanic Black, 79% HbSS), 11 caregivers (80% female, 100% non-Hispanic Black), and 40 healthcare providers (65% female, 65% non-Hispanic White, Myears in practice  = 14.8 years, 75% physicians) participated. Thematic analysis revealed needs related to: decisional conflict, inadequate knowledge, unclear expectations, and inadequate supports and resources. Six forms of support emerged as important for decision-making: establishing an open and trusting patient/family-provider relationship, providing information, accepting ambivalence and unreadiness, supporting implementation of a decision, addressing inadequate health and social services, and promoting adequate social, emotional, and instrumental help. CONCLUSIONS: This is the first study to assess decisional needs and supports for AYAs with SCD considering disease-modifying therapies. Additional research is needed to examine which decision supports are the most impactful to promote effective shared decision-making in this population.

2.
J Pain Res ; 17: 525-533, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38333433

RESUMEN

Purpose: We examine referral sources and clinical characteristics for youth presenting to an outpatient interdisciplinary pediatric chronic pain program. Patients and Methods: Referral data were extracted from the electronic health record. PROMIS Pediatric Anxiety and Pain Interference Scales were administered at an initial evaluation visit. Results: The program received 1488 referrals between 2016 and 2019, representing 1338 patients, with increasing volume of referrals over time. Referrals were primarily from orthopedics (19.6%), physical medicine and rehabilitation (18.8%), neurology (14.4%), and rheumatology (12.6%). Patients referred were primarily female (75.4%), White (80.1%), English-speaking (98.4%) adolescents (median=15.0 years). Of those referred, 732 (54.7%) attended an interdisciplinary evaluation (ie, with ≥2 disciplines). Adolescent anxiety was within the expected range by self-report (N=327, MT-score=55.67) and parent proxy-report (N=354, MT-score=57.70). Pain interference was moderately elevated by self-report (N=323, MT-score=61.52) and parent proxy-report (N=356, MT-score=64.02). There were no differences between patients referred who attended versus did not attend an interdisciplinary evaluation based on age, sex, ethnicity, or language. A smaller than expected proportion of referred Black patients (44%, P=0.02) and patients referred from orthopedics (40%) or pulmonology (11%) attended an evaluation, whereas a larger than expected proportion of those referred from physical medicine and rehabilitation (78%) were evaluated (P<0.001). Conclusion: Results highlight the demand for outpatient interdisciplinary pediatric chronic pain treatment. Findings can inform decisions related to staffing and service design for pediatric hospitals that aim to establish or grow outpatient pediatric chronic pain programs.

3.
Patient Prefer Adherence ; 17: 3167-3171, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38077792

RESUMEN

Purpose: To examine the feasibility of using MEMS® bottles to assess adherence among adolescents and emerging adults with sickle cell disease. Patients and Methods: Eighteen non-Hispanic Black participants with HbSS (M = 17.8 years; 61% male) were given a MEMS® bottle to store hydroxyurea (n = 14) or deferasirox (n = 4). Results: One hundred percent initiated MEMS® use and 61% sustained use through the 18-week study; at follow-up, only 11% returned their bottle on time. Barriers to MEMS® use included medication changes and transition to adult care; facilitators included tip sheets and reminders. Conclusion: While MEMS® is acceptable to this population, ensuring sustained use and timely provision of bottles will require additional supports.

4.
J Pediatr Psychol ; 48(8): 688-699, 2023 08 29.
Artículo en Inglés | MEDLINE | ID: mdl-37354552

RESUMEN

OBJECTIVE: Identify and describe trajectories of cancer-related posttraumatic stress symptoms (PTSS) among siblings of children with cancer within two years of diagnosis. METHOD: Siblings (aged 8-18; M = 11.2 years) across the United States, and for each, one caregiver, were recruited for a cohort sequential longitudinal study with three data collection points six months apart beginning at 6- or 12-months after cancer diagnosis. Siblings (N = 229; 42% of eligible/approached; 53% identifying as female; 68% identifying as non-Hispanic White) completed the Child Posttraumatic Stress Disorder Symptom Scale. Caregivers completed the Strengths and Difficulties Questionnaire (SDQ). Latent class growth analysis (LCGA) and growth mixture modeling (GMM) identified PTSS patterns across time. RESULTS: Fit statistics supported models with three to five PTSS trajectories. The three-class LCGA model included a large mild PTSS group (61%), a moderate PTSS group (35%), and a small (4%) stable severe PTSS group. The four-class LCGA and three- and four-class GMM included groups improving from moderate to mild PTSS (7-21%) and worsening to moderate PTSS across time (12-17%). Across models, siblings with mild PTSS had fewer caregiver-reported emotional and behavioral difficulties on the SDQ. CONCLUSIONS: A large group of siblings of children with cancer demonstrate resiliency, however, substantial subsets experience patterns of PTSS that include levels in the moderate-to-severe range during the first two years post-diagnosis. Future research should examine these patterns in more diverse/representative samples and identify factors associated with increasing and sustained severe PTSS to inform intervention targets and reduce cancer-related burden on families.


Asunto(s)
Neoplasias , Trastornos por Estrés Postraumático , Humanos , Niño , Femenino , Hermanos , Estudios Longitudinales , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/psicología , Neoplasias/diagnóstico , Neoplasias/psicología , Emociones
5.
J Pediatr Psychol ; 48(7): 614-622, 2023 07 20.
Artículo en Inglés | MEDLINE | ID: mdl-37141582

RESUMEN

OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.


Asunto(s)
Cuidados Paliativos , Pediatría , Práctica Psicológica , Niño , Humanos , Psicología Infantil
6.
Am Psychol ; 78(2): 107-118, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37011163

RESUMEN

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Asunto(s)
Medicina de la Conducta , COVID-19 , Racismo , Humanos , Niño , Femenino , Antiracismo , Atención a la Salud
7.
Public Health Rep ; 138(4): 633-644, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37013845

RESUMEN

OBJECTIVE: The COVID-19 pandemic has disrupted traditional health care, including pediatric health care. We described the impact of the pandemic on disparities in pediatric health care engagement. METHODS: Using a population-based cross-sectional time-series design, we compared monthly ambulatory care visit volume and completion rates (completed vs no-show and cancelled visits) among pediatric patients aged 0-21 years in 4 states in the mid-Atlantic United States during the first year of the COVID-19 pandemic (March 2020-February 2021) with the same period before the pandemic (March 2019-February 2020). We used unadjusted odds ratios, stratified by visit type (telehealth or in-person) and sociodemographic characteristics (child race and ethnicity, caregiver primary language, geocoded Child Opportunity Index, and rurality). RESULTS: We examined 1 556 548 scheduled ambulatory care visits for a diverse pediatric patient population. Visit volume and completion rates (mean, 70.1%) decreased during the first months of the pandemic but returned to prepandemic levels by June 2020. Disparities in in-person visit completion rates among non-Hispanic Black versus non-Hispanic White patients (64.9% vs 74.3%), patients from socioeconomically disadvantaged versus advantaged communities as measured by Child Opportunity Index (65.8% vs 76.4%), and patients in rural versus urban neighborhoods (66.0% vs 70.8%) were the same during the remainder of the first year of the pandemic as compared with the previous year. Concurrent with large increases in telehealth (0.5% prepandemic, 19.0% during the pandemic), telehealth completion rates increased. CONCLUSIONS: Disparities in pediatric visit completion rates that existed before the pandemic persisted during the pandemic. These findings underscore the need for culturally tailored practices to reduce disparities in pediatric health care engagement.


Asunto(s)
COVID-19 , Disparidades en Atención de Salud , Niño , Humanos , Atención Ambulatoria , Población Negra , COVID-19/epidemiología , Estudios Transversales , Pandemias , Blanco , Recién Nacido , Lactante , Preescolar , Adolescente , Adulto Joven , Mid-Atlantic Region
8.
Psychol Health ; 38(11): 1482-1493, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35049389

RESUMEN

OBJECTIVES: Intensive interdisciplinary chronic pain treatment programs have demonstrated that pain acceptance predicts positive treatment outcomes, but limited research has focused on less-intensive programs. This study aimed to examine associations between changes in pain acceptance and pain interference among youth participating in an outpatient interdisciplinary chronic pain treatment program. DESIGN: Youth presenting to an evaluation within an interdisciplinary outpatient pediatric chronic pain program completed questionnaires at initial program evaluation (T1) and three months later (T2). MAIN OUTCOME MEASURES: Youth (N = 94, Mage = 14.59 years, 74% female) completed the Chronic Pain Acceptance Questionnaire, Adolescent Version (CPAQ-A) and PROMIS Pediatric Pain Interference scale. RESULTS: Pain acceptance increased significantly from T1 to T2 (p=.001), driven primarily by activity engagement (p=.001). Pain interference decreased from T1 to T2 (p<.001). Improvements in acceptance were strongly associated with reductions in interference (p<.001). An exploratory cross-lagged structural equation model revealed a number of direct and indirect effects between pain acceptance and pain interference at T1 and T2. CONCLUSION: Pain acceptance and interference improved after three months in an outpatient chronic pain treatment program. Improvements in acceptance were strongly related to reductions in interference. Future research should examine these relationships over longer periods, in larger samples.

9.
Pediatr Blood Cancer ; 69(12): e30016, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36152000

RESUMEN

BACKGROUND: Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high-quality care. Research suggests that patient/family-provider relationships are an important indicator of healthcare quality and can influence disease self-management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family-centered communication (e.g., eliciting, understanding, and validating patients' perspectives within their unique psychosocial contexts) contributes to improved family-provider relationships, as well as self-efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family-provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. PROCEDURE: Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13-19 years, M = 16.50) completed semi-structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. RESULTS: For youth with SCD and their caregivers, specific themes related to family-centered communication included: reducing patient/family distress, supporting disease self-management efforts, facilitating information exchange and decision-making, and fostering positive and trusting relationships with providers. CONCLUSIONS: This study helps to address gaps in the literature related to patient/family-provider communication within pediatric SCD. Results underscore the importance of patient- and family-centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family-provider interactions and health outcomes for this underserved population.


Asunto(s)
Anemia de Células Falciformes , Comunicación , Adolescente , Humanos , Niño , Femenino , Masculino , Relaciones Profesional-Paciente , Anemia de Células Falciformes/terapia , Personal de Salud/psicología , Cuidadores
10.
J Pediatr Psychol ; 47(6): 631-640, 2022 06 07.
Artículo en Inglés | MEDLINE | ID: mdl-35459946

RESUMEN

OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.


Asunto(s)
COVID-19 , Neoplasias , Adolescente , COVID-19/epidemiología , Humanos , Neoplasias/psicología , Pandemias , Psicometría , Reproducibilidad de los Resultados , Adulto Joven
11.
Cardiol Young ; 32(5): 738-745, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-34365986

RESUMEN

OBJECTIVE: To examine relationships amongst parental post-traumatic stress symptoms, parental post-traumatic growth, overprotective parenting, and child emotional/behavioural problems in families of children with critical CHD. METHOD: Sixty parents (15 fathers) of children aged 1-6 completed online questionnaires assessing parental post-traumatic stress symptoms and post-traumatic growth, overprotective parenting, and child emotional/behavioural problems. Bivariate correlations and mediational analyses were conducted to evaluate overprotective parenting as a mediator of the association between parental post-traumatic stress symptoms and child emotional/behavioural problems. RESULTS: Parents reported significant post-traumatic stress symptoms, with over 18% meeting criteria for post-traumatic stress disorder and 70% meeting criteria in one or more clusters. Parental post-traumatic growth was positively correlated with intrusion (r = .32, p = .01) but it was not associated with other post-traumatic stress symptom clusters. Parental post-traumatic stress symptoms were positively associated with overprotective parenting (r = .37, p = .008) and total child emotional/behavioural problems (r = .29, p = .037). Overprotective parenting was positively associated with total child emotional/behavioural problems (r = .45, p = .001) and fully mediated the relationship between parental post-traumatic stress symptoms and child emotional/behavioural problems. CONCLUSION: Overprotective parenting mediates the relationship between parental post-traumatic stress symptoms and child emotional and behavioural problems in families of children with CHD. Both parental post-traumatic stress symptoms and overprotective parenting may be modifiable risk factors for poor child outcomes. This study highlights the need for interventions to prevent or reduce parental post-traumatic stress symptoms and to promote effective parenting following a diagnosis of CHD.


Asunto(s)
Cardiopatías Congénitas , Problema de Conducta , Trastornos por Estrés Postraumático , Niño , Humanos , Responsabilidad Parental/psicología , Padres/psicología , Problema de Conducta/psicología , Trastornos por Estrés Postraumático/etiología
12.
J Pediatr Psychol ; 47(3): 259-269, 2022 03 05.
Artículo en Inglés | MEDLINE | ID: mdl-34969064

RESUMEN

OBJECTIVE: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed in Spring 2020 to assess effects of the COVID-19 pandemic on families and caregivers. Initial psychometric properties were promising. The current study examined the factor structure and evaluated convergent and criterion validity of the CEFIS in a new sample. METHODS: In October and November 2020, caregivers (N = 2,531) of youth (0-21 years) scheduled for an ambulatory care visit at Nemours Children's Hospital, Delaware completed the CEFIS and measures of convergent (PROMIS Global Mental Health Scale, Family Assessment Device) and criterion validity (PTSD Checklist-Civilian). Confirmatory factor analysis was used to examine the factor structure of the CEFIS. Bivariate correlations and logistic regression were used to examine convergent and criterion validity. RESULTS: Factor analysis supported the original six- and three-factor structures for the Exposure and Impact scales, respectively. Second-order factor analyses supported the use of Exposure, Impact, and Distress total scores. Higher scores on the CEFIS Exposure, Impact, and Distress scales were associated with increased mental health concerns and poorer family functioning. Higher scores on all CEFIS scales were also associated with greater odds of having clinically significant posttraumatic stress symptoms. CONCLUSIONS: The CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning and may also be useful in identifying families who would benefit from psychological supports.


Asunto(s)
COVID-19 , Adolescente , Niño , Análisis Factorial , Humanos , Pandemias , Psicometría , Reproducibilidad de los Resultados , SARS-CoV-2
13.
J Pediatr Psychol ; 47(4): 403-411, 2022 04 08.
Artículo en Inglés | MEDLINE | ID: mdl-34757430

RESUMEN

OBJECTIVE: Headaches are common among youth and are associated with significant negative outcomes. Despite advances in interdisciplinary treatments for youth with chronic pain, research suggests disparities in access to these services. METHODS: A total of 186 youth (M = 14.19 years old, 70.8% female) presenting to a neurology appointment at a children's hospital system were screened using the Pediatric Pain Screening Tool (PPST), a brief, validated measure to identify youth that may benefit from additional pain management services. RESULTS: Two-thirds of participants (n = 124, 66.7%) screened as medium or high risk on the PPST. Risk categorization did not vary by patient age or sex. A greater proportion of Hispanic/Latino patients were categorized as low-risk relative to non-Hispanic/Latino patients (55.6% vs. 30.1%), and a somewhat lower proportion of patients of color were categorized as medium-risk relative to White patients (14.0% vs. 30.5%). Three-quarters (n = 94, 75.8%) of patients who were screened as medium or high risk were not referred for any additional pain management services. Referrals did not vary by patient age or ethnicity. While not statistically significant, a lower proportion of males received referrals at both medium (8.3% vs. 17.6%) and high levels of risk (15.8% vs. 34.5%), and a greater proportion of youth of color who screened as medium risk received referrals relative to White youth categorized as medium risk (37.5% vs. 10.3%). CONCLUSION: Future research should continue to explore factors influencing decision-making regarding referral to specialized pain management services for youth with headache.


Asunto(s)
Dolor Crónico , Cefalea , Dimensión del Dolor , Adolescente , Niño , Dolor Crónico/diagnóstico , Dolor Crónico/etiología , Femenino , Cefalea/complicaciones , Cefalea/diagnóstico , Cefalea/terapia , Humanos , Masculino , Dimensión del Dolor/métodos , Proyectos Piloto , Derivación y Consulta , Medición de Riesgo
14.
J Fam Nurs ; 27(3): 175-190, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-34024171

RESUMEN

Self-report family functioning measures play a critical role in advancing our understanding of how families are impacted by, and adapt to, the demands of childhood health conditions. In this article, we present key considerations when conceptualizing, assessing, and analyzing dynamic family processes in research; discuss related implications for selecting instruments; and provide an update on the evidence base of self-report family functioning measures. Researchers need to consider theory, definitions of the family, informants, instruments, and procedural and data analytic issues when designing family research. Examples of questionnaires assessing general family functioning, dyadic relationships, and family functioning within the context of pediatric health conditions are provided. Additional evidence of validity, reliability, clinical utility, and cultural sensitivity of these measures is needed within pediatric chronic illness populations. Future research should include multiple family members and utilize varied assessment methods to obtain a comprehensive understanding of family functioning in the context of pediatric health conditions.


Asunto(s)
Familia , Niño , Enfermedad Crónica , Humanos , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
15.
JMIR Res Protoc ; 10(5): e27650, 2021 May 21.
Artículo en Inglés | MEDLINE | ID: mdl-34018965

RESUMEN

BACKGROUND: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/ß0 thalassemia) aged as early as 9 months. However, the uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or tools, especially those that provide medical evidence and consider caregivers' preferences and values, to facilitate a shared discussion with caregivers. OBJECTIVE: The aim of this study is to understand how best to help parents of young children with sickle cell disease and their clinicians have a shared discussion about hydroxyurea (one that considers medical evidence and parent values and preferences). METHODS: We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate SDM: a clinician pocket guide (ie, usual care) and a clinician hydroxyurea SDM toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0-5 years) who were offered and prescribed hydroxyurea and the resultant health outcomes. RESULTS: The Ethics Committee of the Cincinnati Children's Hospital Medical Center approved this study in November 2017. As of February 2021, we have enrolled 120 caregiver participants. CONCLUSIONS: The long-term objective of this study is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA can make informed and shared decisions about their health. TRIAL REGISTRATION: ClinicalTrials.gov NCT03442114; https://clinicaltrials.gov/ct2/show/NCT03442114. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/27650.

16.
J Pediatr Psychol ; 46(5): 504-513, 2021 06 03.
Artículo en Inglés | MEDLINE | ID: mdl-33749794

RESUMEN

OBJECTIVE: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure. METHODS: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha). RESULTS: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress). DISCUSSION: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic.


Asunto(s)
COVID-19 , Cuidadores , Niño , Humanos , Psicometría , Reproducibilidad de los Resultados , SARS-CoV-2 , Encuestas y Cuestionarios
17.
Subst Abus ; 41(1): 77-84, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-31638877

RESUMEN

AbstractsBackground: Individuals who misuse opioids frequently have comorbid psychiatric issues, including post-traumatic stress disorder (PTSD) and depression. However, little is known about the mechanisms by which these disorders are associated with opioid misuse and specifically in community pharmacy settings. The current study examined whether depression mediated the relationship between PTSD and opioid misuse in patients filling opioid prescriptions. Methods: We administered a health survey in four community pharmacies among patients filling opioid medications in southwestern Pennsylvania. Univariate statistics were used to assess relationships among demographic and clinical characteristics of PTSD, depression, and opioid misuse behaviors. We then examined whether depression mediated the relationship between PTSD and opioid misuse using ordinary least squares path analysis with bootstrapping. Results: A total of 333 participants completed the health survey. Opioid misuse was reported among 15.9% of all participants, 33.3% among those with a positive PTSD screen, and 29.3% of those who screened positive for depression. Depression significantly mediated the relationship between PTSD and opioid misuse. Specifically, there was a statistically significant indirect effect (ab) of PTSD on opioid misuse through a pathway mediated by depression (ab = .06, SEab = .02, 95% CI = .02-.10). The direct effect (c') of PTSD on opioid misuse was also significant (c' = .12, SEc' = .05, P = .01, 95% CI = .03-.22), suggesting partial mediation. Conclusions: Results suggest an indirect pathway by which clinical intervention may help ameliorate outcomes in patients with PTSD. Further, there is an increased need for screening, assessment, and intervention protocols for this patient population in which community pharmacy is a novel setting to expand future efforts within the patient population.


Asunto(s)
Trastorno Depresivo/complicaciones , Trastornos Relacionados con Opioides/complicaciones , Trastornos por Estrés Postraumático/complicaciones , Adulto , Servicios Comunitarios de Farmacia , Comorbilidad , Trastorno Depresivo/epidemiología , Femenino , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Encuestas Epidemiológicas , Humanos , Análisis de los Mínimos Cuadrados , Masculino , Tamizaje Masivo/estadística & datos numéricos , Persona de Mediana Edad , Trastornos Relacionados con Opioides/epidemiología , Pennsylvania , Prevalencia , Trastornos por Estrés Postraumático/epidemiología
18.
Pediatr Emerg Care ; 36(10): e549-e557, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-29346235

RESUMEN

OBJECTIVES: After injury, many children experience posttraumatic stress symptoms (PTSS) that negatively impact recovery. Acute pain and PTSS share neurobiological pathways, and acute dosage of morphine has been linked to reduced PTSS in naturalistic studies. However, the complex interactions between pain, morphine and other opioid use, and PTSS have yet to be investigated in robust pediatric samples.This prospective, longitudinal study examined relationships between acute pain, opioid medications, and PTSS after pediatric injury. METHODS: Ninety-six children aged 8 to 13 years (mean = 10.60, SD = 1.71), hospitalized for unintentional injury, completed assessments at baseline (T1) and 12 weeks (T2) later. Pain ratings and opioid administration data were obtained via chart review. RESULTS: Structural equation modeling revealed that worst pain endorsed during hospitalization was positively associated with concurrent and later PTSS when controlling for evidence-based risk factors (ie, age, sex, prior trauma history, traumatic appraisals of injury event, heart rate). Neither opioid medications overall nor morphine specifically (milligram/kilogram/day) administered during hospitalization mediated the relationship between pain and T2 PTSS. CONCLUSIONS: Pain during hospitalization may increase susceptibility for persistent PTSS above and beyond the influence of other empirical risk factors. Findings suggest that pain assessment may be a useful addition to pediatric PTSS screening tools and highlight the need for additional research on pharmacological secondary prevention approaches. Given that inadequate pain control and persistent PTSS each hinder recovery and long-term functioning, better understanding of interactions between acute pain and PTSS after injury is essential for improving screening, prevention, and early intervention efforts.


Asunto(s)
Analgésicos Opioides/uso terapéutico , Trastornos por Estrés Postraumático/tratamiento farmacológico , Heridas y Lesiones/tratamiento farmacológico , Lesiones Accidentales , Dolor Agudo/tratamiento farmacológico , Adolescente , Niño , Niño Hospitalizado , Femenino , Humanos , Estudios Longitudinales , Masculino , Manejo del Dolor , Dimensión del Dolor , Estudios Prospectivos , Factores de Riesgo , Estados Unidos
20.
J Pediatr Psychol ; 44(9): 1024-1033, 2019 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-31250896

RESUMEN

OBJECTIVE: To examine rate of registration for randomized controlled trials (RCTs) published in the Journal of Pediatric Psychology (JPP) and Journal of Clinical Child & Adolescent Psychology (JCCAP). Secondary aims were to investigate associations between trial characteristics and registration status and compare registered and published primary outcomes. METHODS: RCTs published in JPP or JCCAP between January 1, 2007 and December 31, 2017 were included. Secondary analyses of previously published RCTs, meta-analytic, systematic, and narrative reviews, and articles reporting primary aims related to intervention acceptability, feasibility, and/or cost-effectiveness were excluded. Trial registration status, primary registered and published outcomes, dates of registration, participant enrollment and publication, sample size, and country where the trial was conducted were extracted from articles and trial registries. RESULTS: Of 61 RCTs included, 48% were registered. Among registered trials, only 14% were registered before participant enrollment began. Most were registered late (i.e., retrospectively; 86%) in ClinicalTrials.gov (90%). Registration status did not differ based on journal, study sample size, or geographic region where the study was conducted. A greater proportion of trials published in 2013-2017 were registered (61%) relative to those published in 2007-2012 (32%), p = .03. Among registered trials, 57% had discrepancies between registered and published primary outcomes. CONCLUSIONS: Findings reveal low rates of prospective registration and considerable risk for incomplete or selective outcome reporting among RCTs published in JPP and JCCAP. Coordinated efforts from all stakeholders involved in the conduct and reporting of clinical child and pediatric psychology research are needed to improve transparent reporting of clinical trials.


Asunto(s)
Ensayos Clínicos como Asunto , Psicología Infantil , Adolescente , Niño , Humanos , Estudios Retrospectivos
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