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BACKGROUND: Engaging in physical activity (PA) throughout cancer treatment offers many benefits, but may be challenging due to cancer-related pain. Pain research in pediatric cancer has primarily focused on procedural pain, with fewer studies exploring how pain affects PA. The current study qualitatively investigated the impact of pain on PA in youth with acute lymphoblastic leukemia (ALL) using a biopsychosocial framework. PROCEDURE: As part of a larger study, caregivers (N = 17) of a child diagnosed with ALL and on treatment for less than 1 year completed a semi-structured interview about perceptions of their child's health behaviors during ALL treatment. This secondary analysis focused specifically on discussions about pain and its impact on PA. We followed Braun and Clarke's (2006) six-step thematic analysis framework to identify themes of pain-related barriers to PA. RESULTS: Key pain-related barriers endorsed by caregivers included: interactions among pain and treatment effects, caregiver distress around seeing their child in pain, and fear of interfering with medical equipment. Despite these barriers, caregivers found creative solutions to adapt activities for their child. Caregivers were reassured by PA advice from their medical team; however, advice varied between teams. CONCLUSION: The relationship between pain and PA during ALL treatment is influenced by an intricate system of biological (e.g., treatment effects), psychological (e.g., parental distress), and social (e.g., communication among families and medical teams) factors. Future directions include identifying evidence-based PA recommendations and exploring family-team communication dynamics. This study also highlights a need to prioritize ALL pain management and involve caregivers in behavioral treatment protocols to improve PA.
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Virtual reality (VR) is an innovative technology with the potential to enhance treatment for children with chronic pain and functional symptoms. Currently, little is known about patients' experiences of VR in the setting of intensive interdisciplinary pain treatment (IIPT). This study aimed to better understand how patients engage with and benefit from VR. This case report focuses on a 12-year-old female with amplified musculoskeletal pain syndrome and comorbid functional neurological disorder receiving treatment in inpatient IIPT. VR was incorporated into physical/occupational and recreational therapy sessions. A semi-structured interview was completed one-month post-discharge. Qualitative analysis revealed three major themes: Process of Change (VR was unique/immersive, reduced pain focus, challenged skepticism, and changed pain perception), Efficacy (VR increased movement, supported transitioning from a wheelchair to walking independently, and increased confidence, excitement, and surprise), and Engagement (VR aided in acknowledging progress, increased camaraderie, was fun, and challenged patient to extend treatment goals made in VR to real life). Therapist observations of the benefits and barriers to using VR in treatment are described. Overall, this report indicates that VR may be a helpful tool to use with existing IIPT interventions to enhance patient engagement in treatment and improve functionaloutcomes.
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OBJECTIVE: Racially minoritized youth with T1D are made vulnerable to disproportionately adverse health outcomes compared to White peers due to enduring systems of oppression. Thus, understanding modifiable psychosocial factors associated with diabetes-related outcomes in racially minoritized youth may help to buffer deleterious effects of racism. One factor meriting exploration is racial-ethnic identity. There is currently limited research on measures fit to assess ethnic identity in youth with chronic illnesses. This study's purpose is to examine the factor structure, reliability, and validity of the revised Multigroup Ethnic Identity Measure (MEIM-R) in a racially- and income-diverse sample of youth with T1D across sociodemographic and illness-related proxies for one's positionality in oppressive systems. METHOD: As part of a larger study examining resilience, 142 youth with T1D ages 12-18 (Mage = 14.66, SDage = 1.62, 55.6% Black/African-American, 44.4% White) completed the MEIM-R and various psychosocial measures. HbA1c levels and illness duration were extracted from medical records and caregivers reported income information. Confirmatory factor analyses compared the structural validity of competing MEIM-R models, and uniform and non-uniform differential item functioning (DIF) was explored across sociodemographic and illness-related factors. RESULTS: While a bifactor structure was supported, the MEIM-R was found to exhibit DIF by race and gender on multiple MEIM-R items and did not demonstrate linear bivariate relations with other psychosocial factors. CONCLUSIONS: Since different MEIM-R item response patterns were observed across racial/ethnic and gender groups, caution is warranted in using this measure in racially and gender diverse youth with T1D.
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BACKGROUND: Pediatric hematopoietic stem cell transplantation (HCT) is an intensive medical procedure that places substantial financial and logistical burdens on families and is associated with significant health risks, such as graft-versus-host disease (GVHD), and infections. The influence of the social determinants of health (SDoH) on outcomes following pediatric HCT is understudied. This study aimed to examine whether SDoH predicts outcomes following pediatric HCT. PROCEDURE: Data were collected from 84 children who received HCT (Mage = 5.8 years, SD = 3.7) and their primary caregiver. Detailed demographic information was collected from caregivers at baseline, and child health information was extracted from the electronic medical records. Multivariate logistic regression was used to examine the association between SDoH and health outcomes within a 24-month period following pediatric HCT. RESULTS: After controlling for malignancy as reason for transplant and donor type, lower family income predicted the incidence of chronic GVHD. Neighborhood deprivation, total family income, public health insurance, caregiver relationship status, caregiver educational attainment, and perceived family financial difficulties did not predict acute GVHD or the number of infections. CONCLUSIONS: Total family income is a simple family indicator of SDoH that predicts chronic GVHD after pediatric allogeneic HCT. These findings provide further support for the importance of screening of child and family SDoH risks to ensure that fundamental needs can be met to mitigate potential health disparities for up to 2 years following pediatric HCT.
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Doença Enxerto-Hospedeiro , Transplante de Células-Tronco Hematopoéticas , Humanos , Criança , Pré-Escolar , Determinantes Sociais da Saúde , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/métodos , Doença Enxerto-Hospedeiro/epidemiologia , Doença Enxerto-Hospedeiro/etiologia , Doença Enxerto-Hospedeiro/patologia , Avaliação de Resultados em Cuidados de SaúdeRESUMO
PURPOSE: Apps have the potential to aid in cancer self-management, but there is limited guidance available for selecting among currently available options. The purpose of this study is to evaluate the behavior change techniques (BCTs) and quality of publicly available cancer self-management apps. METHODS: Cancer self-management apps were identified from the Apple and Google Play stores in April 2022. Trained study team members coded the BCTs included in each app and rated its quality using the Mobile App Rating Scale (MARS). BCTs supported by previous literature were coded as cancer management BCTs. RESULTS: The 39 apps meeting inclusion criteria included an average of 5.85 BCTs (standard deviation [SD], 3.49; range, 0-15) and 3.54 cancer management BCTs (SD, 1.90; range, 0-8). The most commonly included BCTs were educational or informational strategies: provide information about behavior-health link, provide instruction, and provide information on consequences. The overall app quality ranged from 1.69 to 4.20 (M, 3.29; SD, 0.67). CONCLUSION: No cancer self-management apps were of excellent quality, and less than half included multiple cancer management BCTs beyond education. Clinical implications are discussed, and opportunities to improve the content and quality of apps to address the critical self-management needs of patients diagnosed with cancer are highlighted.
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Aplicativos Móveis , Neoplasias , Autogestão , Humanos , Autogestão/métodos , Terapia Comportamental/métodos , Comportamentos Relacionados com a Saúde , Neoplasias/terapiaRESUMO
Background. Medication adherence is challenging after pediatric hematopoietic stem cell transplant (HCT), particularly after hospital discharge. Post-HCT medication adherence is important to manage morbidity and mortality risk. Designing interventions that are effective and acceptable to caregivers is key to improving post-HCT medication adherence. This study aimed to characterize caregiver preferences about medication adherence support from their child's medical team. Methods. Twenty-nine caregivers of children who received an HCT completed semi-structured qualitative interviews about their experience with, and recommendations for improving, medication adherence support provided by the medical team. Twenty-two caregivers also completed a card sort task to clarify the content of received support and caregiver recommendations for future HCT families. Results. Thematic analysis revealed eight themes grouped into two categories: Communication Is Key and Practical Medication Adherence Support. Caregivers emphasized the importance of communication in helping them manage their child's outpatient medications and provided suggestions to further strengthen communication. The types of practical medication adherence support used varied across caregivers highlighting the importance of tailoring adherence support to each family's needs. Caregivers also identified all the domains as potentially helpful for other families. Discussion. Findings suggest that caregivers prefer that efforts to improve outpatient medication adherence post-HCT prioritize the medical team initiating frequent, clear, and open communication about medications, and provide educational materials on adherence (e.g., handouts). Results also indicate that practical medication adherence supports should be offered based on family preferences but that families may particularly appreciate tips about addressing medication challenges based on other caregivers' lived experience.
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Cuidadores , Transplante de Células-Tronco Hematopoéticas , Criança , Humanos , Adesão à Medicação , Alta do PacienteRESUMO
OBJECTIVE: Taking medications as prescribed after hematopoietic stem cell transplant (HCT) is key for ensuring children's survival; however, suboptimal medication adherence is common. Development of evidence-based interventions to improve medication adherence post-HCT is contingent upon understanding what adherence facilitators (i.e., unique traits, characteristics, or resources inherent to the individual, medical treatment, or healthcare team) and strategies (i.e., tools caregivers or medical providers intentionally use) promote medication adherence in this population. Therefore, this study examined caregiver-perceived medication facilitators post-HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT within the past 2 years. RESULTS: Thematic analysis guided by grounded theory revealed 14 saturated themes that were grouped into 4 categories: family facilitators, medication facilitators, caregiver strategies, and multidisciplinary treatment team strategies. CONCLUSIONS: Overall, findings suggest that caregivers of children who received an HCT are highly resourceful and independently develop many strategies to assist them with medication management after their child's HCT. These facilitators and strategies varied between caregivers and over time. Despite prevalent facilitators and strategies, caregiver burden associated with medication adherence remains high. Caregivers may benefit from the multidisciplinary treatment team providing individualized and multicomponent (educational and behavioral) medication adherence supports to ease this burden particularly shortly after hospital discharge.
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Transplante de Células-Tronco Hematopoéticas , Adesão à Medicação , Humanos , Criança , Cuidadores , Inquéritos e Questionários , Pesquisa QualitativaRESUMO
OBJECTIVE: Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. METHOD: Fifty-one survivors of pediatric HCT (Mage = 14.3 years, standard deviation [SD] = 4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. RESULTS: Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.] = .23, p < .001) and HRQoL (Est. = -.2, p = .04), and direct effects of depressive symptoms on HRQoL (Est. = -.68, p < .001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est. = -.16, p = .006). CONCLUSIONS: Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.
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Transplante de Células-Tronco Hematopoéticas , Qualidade de Vida , Adolescente , Criança , Depressão/etiologia , Depressão/psicologia , Feminino , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Masculino , Dor/etiologia , Qualidade de Vida/psicologia , Sobreviventes/psicologiaRESUMO
OBJECTIVE: Medications are critical for reducing morbidity and mortality risk in pediatric hematopoietic stem cell transplant (HCT). Nonetheless, medication adherence is suboptimal in this population. Identifying and managing barriers to medication management (i.e., medication barriers) is a key component of supporting medication adherence. However, understanding how medication barriers uniquely impact the pediatric HCT population and which barriers characterize each treatment stage remain unclear. Therefore, this study examined caregiver-perceived medication barriers over the course of pediatric HCT. METHODS: Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT in the past 24 months and were either still admitted to, or had been discharged from, the hospital. RESULTS: Grounded methodology revealed 21 qualitative themes grouped into 6 hierarchical categories. Findings reflected barriers to be present across HCT treatment but to differ based on treatment stage with only child medication refusal being a consistent barrier across all stages. Barriers were particularly prevalent after hospital discharge post-HCT when caregivers assumed full responsibility for medication management. In addition, families approaching hospital discharge often lacked insight about these post-discharge barriers such that they did not report anticipating the range of barriers described by caregivers who had already been discharged from the hospital and taken on full responsibility for medication management. CONCLUSIONS: Findings support the benefit of medication barrier assessment across HCT treatment. These results suggest that families may benefit from intervention to address the specific barriers they experience around medication adherence especially during the post-HCT outpatient period.
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Cuidadores , Transplante de Células-Tronco Hematopoéticas , Assistência ao Convalescente , Criança , Humanos , Adesão à Medicação , Alta do PacienteRESUMO
OBJECTIVE: Diabetes-specific psychological flexibility (the ability to engage in valued behaviors, be open to internal experiences, with present-moment awareness, while living with diabetes) is associated with HbA1c and health-related quality of life in youth with type 1 diabetes (T1D). Having brief diabetes-specific psychological flexibility assessments that perform equivalently across diverse individuals is important for research and clinical work addressing health disparities. The present study aimed to create 9-and 3-item short forms (DAASito-9 and -3) of the Diabetes Acceptance and Action Scale (DAAS-22), and evaluate their validity, reliability, and measurement invariance (MI). RESEARCH DESIGN AND METHODS: Youth with T1D (n = 179, Mage = 14.64, 50% female, 56% Black/African American) completed self-report measures at an endocrinology clinic visit. HbA1c was extracted from medical records. One-half of the sample was used to develop the DAASitos with the highest reliability, McDonald's ð ≥ 0.75, and convergent validity (r ≥ 0.90 to DASS-22). Confirmatory factor analyses evaluated structural validity. MI was assessed across demographic (race, gender, grade, household income) and disease characteristic (illness duration, HbA1c) groups. Correlations with measures of psychological flexibility assessed additional convergent validity, and latent mean differences across groups were evaluated after confirming MI. RESULTS: MI was supported. The DAASito-9 and -3 were correlated in expected directions with other psychological flexibility measures, HbA1c, and health-related quality of life. CONCLUSIONS: The psychometric properties of the DAASito-9 and -3 support their use in research and clinical care of diverse youth with T1D. Significant differences in psychological flexibility across race, income, and glycemic health warrant further research and clinical intervention.
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Diabetes Mellitus Tipo 1 , Adolescente , Diabetes Mellitus Tipo 1/complicações , Feminino , Humanos , Masculino , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
The Social and Emotional Assets and Resilience Scale (SEARS) is a promising instrument for prediction of resilience in youth; however, there is limited data to support its use. The purpose of the current study was to examine the factor structure, measurement invariance, internal consistency, and validity of the SEARS-Adolescent Report in youth 8 to 20 years of age. Two hundred and twenty-five childhood cancer survivors (Mage = 15.9, SD = 4.2; 51.4% male; 74.5% White) and 122 student controls without history of significant health problems (Mage = 14.2, SD = 3.5; 54.1% female; 79.5% White) 8 to 20 years of age completed the SEARS-A. The SEARS-A was found to have an adequate factor structure and model fit (χ2 = 1215.5, p < .001; root mean square error of approximation = .057; comparative fit index = .95; standardized root mean square residual = .06) and demonstrated invariance across domains of age, health status, gender, race, and socioeconomic status (Δ comparative fit index < -0.01). It also demonstrated excellent internal reliability, criterion validity, and current validity when compared with another well-established measure of psychological adjustment. As such, the SEARS-A has potential to be a useful, valid, and psychometrically sound tool for predicting social-emotional adjustment outcomes among at-risk youth 8 to 20 years of age.
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Emoções , Adolescente , Criança , Análise Fatorial , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Mobile health apps have the potential to promote adherence to headache management through the use of evidence-based behavior change techniques (e.g., self-monitoring). While many headache management apps exist, the extent to which these apps include behavior change techniques remains unknown. Thus, the present study systematically evaluated the content and quality of commercially available headache management apps. METHODS: Headache apps were identified using a systematic search in the Apple App and Google Play stores. A total of 55 apps were evaluated using the taxonomy of behavior change techniques and app quality using the Mobile App Rating Scale. RESULTS: Headache management apps included 0-14 behavior change techniques (Mean [M] = 5.89) and 0-8 headache management behavior change techniques (M = 4.29). App quality ranged from 2.84-4.67 (M = 3.73) out of 5.00. Three apps, Migraine Trainer, Easeday: Headache & Migraine, and PainScale, included the highest number of overall and headache management behavior change techniques along with good quality scores. CONCLUSIONS: While randomized controlled trials are necessary to determine the efficacy of individual headache apps, most existing apps include evidence-based headache management behavior change techniques. Headache apps often focus on either self-monitoring or stress management via relaxation training, suggesting that patients' needs should be used to inform app selection.
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Transtornos de Enxaqueca , Aplicativos Móveis , Telemedicina , Terapia Comportamental/métodos , Cefaleia/terapia , HumanosRESUMO
OBJECTIVE: Youth with craniopharyngioma experience weight gain, fragmented sleep, excessive daytime sleepiness (EDS), fatigue, and psychosocial problems that negatively impact their overall health-related quality of life (HRQoL). Greater hypothalamic tumor involvement (HI) may be associated with higher rates or severity of these impairments; however, the direct and indirect impact of HI on the physical and psychosocial consequences associated with pediatric craniopharyngioma remain unclear. The purpose of the current study was to examine relations between HI, body mass index (BMI), fragmented sleep, EDS, fatigue, psychosocial problems, and HRQoL among youth with craniopharyngioma. METHODS: Eighty-four youth with craniopharyngioma (Mage = 10.27 ± 4.3 years, 53.6% female, 64.3% White) were assessed with actigraphy, nocturnal polysomnography, and multiple sleep latency tests prior to proton therapy, when indicated. Caregivers completed measures of fatigue, psychosocial functioning, and HRQoL. RESULTS: Hypothalamic tumor involvement was associated with greater BMI (Est. = 2.97, p = 0.003) and daytime sleepiness (Est. = 2.53, p = 0.01). Greater fatigue predicted more psychosocial problems (Est. = 0.29, p < 0.001) and lower HRQoL (Est. = 0.23, p = 0.001). Psychosocial problems also predicted lower HRQoL (Est. = -0.34, p = 0.004). Fragmented sleep (Est. = 0.03, p = 0.04) and fatigue (Est. = 0.10, p = 0.02) indirectly predicted lower HRQoL through psychosocial problems. CONCLUSIONS: Youth with craniopharyngioma with greater HI may benefit from weight reduction interventions and management of excessive sleepiness. Patients should be prospectively monitored for sleep problems, fatigue, and psychosocial problems, as these patients may benefit from interventions targeting fatigue and psychosocial health to improve HRQoL.
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Craniofaringioma , Distúrbios do Sono por Sonolência Excessiva , Neoplasias Hipotalâmicas , Neoplasias Hipofisárias , Adolescente , Criança , Pré-Escolar , Craniofaringioma/complicações , Craniofaringioma/patologia , Craniofaringioma/terapia , Distúrbios do Sono por Sonolência Excessiva/complicações , Fadiga/complicações , Fadiga/epidemiologia , Feminino , Humanos , Neoplasias Hipotalâmicas/complicações , Masculino , Obesidade/complicações , Neoplasias Hipofisárias/complicações , Neoplasias Hipofisárias/psicologia , Qualidade de Vida , SonoRESUMO
OBJECTIVE: The COVID-19 pandemic has been difficult for families across the world due to fears about infection risk, increased social isolation, and significant changes in family roles and routines. Families with a child undergoing pediatric hematopoietic stem cell transplant (HCT) may be at even greater risk for poor adjustment during COVID-19 given their child's increased risk for infection. The purpose of the current study was to qualitatively examine the impact of COVID-19 on family adjustment during pediatric HCT to inform clinical care. METHODS: Twenty-nine caregivers of children (≤12 years) who underwent an HCT within the past 2 years completed semi-structured qualitative interviews and demographic questionnaires in the first 4 months following initial COVID-19 quarantine. RESULTS: Twenty-two themes emerged from the interviews using grounded theory methodology. Although nearly half of caregivers described COVID-19 as a stressor, 69% of caregivers reported adequate adjustment to COVID-19. Caregivers generally attributed their positive adjustment to HCT preparing the family for COVID-19 and more difficult adjustment to increased physical or social isolation and COVID-19 amplifying germ fears. The child's HCT treatment status also had important implications on family adjustment to COVID-19. CONCLUSIONS: Results suggest that families undergoing pediatric HCT are uniquely prepared to cope with the impacts of a global pandemic; however, families experiencing certain risk factors (e.g., more recent transplant, impaired access to social support, reduced access to coping tools) may experience poorer adjustment during pandemics such as COVID-19 and may benefit from increased psychosocial support from their healthcare team.
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COVID-19 , Transplante de Células-Tronco Hematopoéticas , Cuidadores , Criança , Família , Humanos , Pandemias , SARS-CoV-2RESUMO
Inflammatory Bowel Disease (IBD) is a chronic, costly, and burdensome disease that is typically diagnosed during adolescence. Despite the use of effective treatments, rates of relapse and intestinal inflammation remain high and put patients at risk for long term physical and psychosocial health complications. Given the costs associated with IBD, it is critical to examine potential risk factors of poor health-related quality of life (HRQoL) among patients for the enhancement and further development of interventions. As such, the aim of the current study was to examine how sociodemographic and disease characteristics, psychosocial problems, and adherence behaviors impact HRQoL among a sample of youth with IBD. 107 adolescents with IBD and their caregiver completed self- and parent-report measures as part of a psychosocial screening service. Medical records were reviewed to obtain information regarding diagnosis, insurance, medication use, illness severity, and disease activity. Results revealed lower HRQoL scores among adolescents with more psychosocial problems (Est. = -3.08; p < .001), greater disease severity (Est. = -.40; p = .001), and those who identified as Black (Est. = -.38; p < .05). Greater disease severity (Est. = .13 p = .004), use of nonpublic insurance (Est. = .32 p = .004), and fewer psychosocial problems (Est. = -.13 p = .04) were associated with greater adherence behaviors. These findings suggest that implementing individually tailored, evidence-based psychological interventions focused on coping with psychosocial problems and symptoms may be important in enhancing adherence behaviors and HRQoL among adolescents with IBD.
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Doenças Inflamatórias Intestinais , Qualidade de Vida , Adaptação Psicológica , Adolescente , Humanos , Fatores de Risco , Índice de Gravidade de DoençaRESUMO
AIM: To examine the impact of clinical factors, cognitive deficits, and sleepiness on health-related quality of life (HRQoL) among young people with craniopharyngioma. METHOD: Seventy-eight patients (67% White; 41 males, 37 females; mean age 10y 8mo, SD 3y 11mo, range 6-20y) with craniopharyngioma were assessed for tumor extent and diabetes insipidus. All patients underwent overnight polysomnography and multiple sleep latency tests after surgical resection. Executive functioning was assessed using parent-reported measures. Patients and their parents completed measures of HRQoL. None had a history of previous radiation therapy. RESULTS: Path analysis was used to test hypothesized relations while controlling for demographic and disease characteristics. Analyses revealed poorer parent-reported HRQoL among young people with greater executive functioning symptoms (estimate -0.83; p<0.001). Direct and indirect effects were found among diabetes insipidus, executive functioning, and parent-reported HRQoL. Diabetes insipidus directly predicted greater global executive functioning impairment (estimate 5.15; p=0.04) and indirectly predicted lower HRQoL through executive functioning impairment (estimate -4.25; p=0.049). No significant effects were found between excessive daytime sleepiness, tumor hypothalamic involvement, diabetes insipidus, executive functioning, and patient-reported HRQoL. INTERPRETATION: These findings suggest that young people with craniopharyngioma presenting with diabetes insipidus may benefit from targeted neurocognitive and psychosocial screening to inform interventions. What this paper adds Children with craniopharyngioma and executive functioning impairment are more likely to have poorer health-related quality of life (HRQoL). Diabetes insipidus, a complication associated with surgery, predicted greater executive functioning impairment. Diabetes insipidus indirectly predicted lower parent-reported HRQoL through executive functioning impairment.
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Craniofaringioma/fisiopatologia , Função Executiva/fisiologia , Neoplasias Hipofisárias/fisiopatologia , Qualidade de Vida/psicologia , Sono/fisiologia , Adolescente , Criança , Craniofaringioma/psicologia , Feminino , Humanos , Masculino , Neoplasias Hipofisárias/psicologia , Adulto JovemRESUMO
OBJECTIVE: Following the Journal of Pediatric Psychology's special edition on health disparities, calling for Phase 2 research exploring mechanisms of racial groups in health disparities, this study aims to explore social information processing predictors of longitudinal hemoglobin A1c (HbA1c) trajectories in a racially diverse group of adolescents. The social information processing model of glycemic control in type 1 diabetes (T1D) posits that adolescents who make negative attributions about reactions of friends are likely to find adherence difficult in social situations, have increased stress, and have suboptimal glycemic control. METHODS: One hundred eighty-four youth with T1D completed self-report measures and HbA1c at three time points within 1 year was extracted from medical records. Growth mixture modeling empirically derived classes of HbA1c trajectories and explored predictive relationships of social information processing variables, demographics, and diabetes characteristics. RESULTS: Three classes emerged: High Decelerating, Mid-High Accelerating, and Near-Optimal Accelerating. Black/African American participants were highly likely to be in the High and Mid-High groups. Higher anticipated adherence difficulties in social situations predicted increased odds of being in the Mid-High versus Near-Optimal HbA1c group. Increased diabetes stress predicted increased odds of being in the High versus Near-Optimal and Mid-High groups. CONCLUSIONS: Continuing research on mechanisms behind this health disparity is necessary with more representation from varied racial and ethnic groups. Equal access to diabetes technology and psychosocial treatments are recommended and implications for clinical intervention development are discussed.
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Diabetes Mellitus Tipo 1 , Adolescente , Negro ou Afro-Americano , Glicemia , Criança , Diabetes Mellitus Tipo 1/terapia , Amigos , Hemoglobinas Glicadas/análise , Humanos , Grupos RaciaisRESUMO
OBJECTIVE: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. METHODS: One seventy nine youth with type 1 diabetes (ages 12-18 years) and caregivers completed the DFCS-Revised as well as assessments of adherence, psychosocial functioning, and diabetes-related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. RESULTS: Confirmatory factor analyses in the validation sample supported the use of a six-item short form (DFCS-SF) either as a total score (6-items) or a direct (3-item) and indirect (3-item) score. Variations of the DFCS-SF (three items of the 6-item short form) also had acceptable model fit. The short-form questionnaires had acceptable internal consistency and convergent validity (6-item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3-item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS-SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS-SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes-related stress, and more psychosocial concerns. CONCLUSIONS: The DFCS-SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non-optimal adherence, diabetes-related stress, and psychological distress.
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Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Conflito Familiar , Adolescente , Adulto , Criança , Diabetes Mellitus Tipo 1/sangue , Análise Fatorial , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Masculino , Cooperação do Paciente , Psicometria , Funcionamento Psicossocial , Reprodutibilidade dos Testes , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Inquéritos e Questionários , Adulto JovemRESUMO
Type-1 Diabetes (T1D) is a prevalent and costly disorder associated with substantial morbidity that differentially impacts low-income and/or minority adolescents and their families. The primary study objective was to develop a guiding model to inform culturally humble interventions for Mid-southern youth with T1D presenting with multiple correlates of suboptimal glycemic control and their families. In order to develop a clinic specific guiding model, conceptualizations of health, the need/type of intervention thought to be most helpful, the optimal structure, and strategies to improve the cultural/regional fit was ascertained from (A) youth with T1D (n = 13) and caregivers (n = 11) via qualitative interviews and, (B) pediatric endocrinologists and nurse practitioners (n = 6), and (C) nurses, diabetes educators, dietitians, and social workers (n = 9) via focus groups. Qualitative themes were synthesized to guide the treatment development model whereby Quality of Life and Glycemic Control would be directly enhanced by interventions to promote Coping, Support, Education, and Improved Psychosocial Functioning and indirectly through improved Adherence and T1D Autonomy delivered in a culturally humble way that affirms youths' T1D identify. These finding suggest that existing evidence-based treatments may provide a great fit for low-income, and/or minority youth with T1D and their families living in the mid-south, provided these interventions are delivered in culturally humble manner.
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Diabetes Mellitus Tipo 1 , Qualidade de Vida , Adaptação Psicológica , Adolescente , Cuidadores , Criança , Diabetes Mellitus Tipo 1/terapia , Controle Glicêmico , HumanosRESUMO
OBJECTIVE: To determine reliability and validity of the acceptance and action diabetes questionnaire (AADQ) and the diabetes acceptance and action scale for children and adolescents (DAAS), measures of diabetes-specific psychological flexibility. METHODS: One hundred and eight-one youth with type 1 diabetes completed the AADQ, DAAS, and measures of mindfulness, cognitive fusion, and health-related quality of life. HbA1c was extracted from medical records. Confirmatory factor analysis (CFA) was used to cull items and evaluate the factor structures of the AADQ and DAAS. Bivariate correlations were conducted between all measures to explore content validity. RESULTS: CFAs supported a one-factor structure of the AADQ (for youth and parent report) and a second-order DAAS solution with a total score indicated by avoidance, values impairment, and avoidance subscales. All scales and subscales displayed strong internal consistency (α = .86-.95). The AADQ and DAAS evidence good content validity based on associations with other measures. CONCLUSIONS: The AADQ and DAAS are reliable, valid measures of diabetes-specific psychological flexibility.