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Given the numerous opportunities and the wide knowledge gaps in pediatric heart failure, an international group of pediatric heart failure experts with diverse backgrounds were invited and tasked with identifying research gaps in each pediatric heart failure domain that scientists and funding agencies need to focus on over the next decade.
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Insuficiência Cardíaca , Humanos , Criança , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/terapia , Lacunas de EvidênciasRESUMO
BACKGROUND: Solid organ transplantation (SOT) offers improved long-term survival for youth with end-stage organ disease. From a neurodevelopmental, cognitive, and academic perspective, children with solid organ transplant have a number of unique risk factors. While cognitive functioning may improve post-transplantation, it is important to understand the trajectory of neurocognitive development starting in transplant candidacy to evaluate the implications of early deficits. AIM: The aim of this paper is to describe the neurocognitive risks and long-term implications for adolescent transplant recipients. METHOD: This paper provides an overview of neurocognitive functioning in youth with end-stage organ dysfunction with discussion of implications for adolescent transplant recipients. RESULTS: Post-transplant, adolescent, and young adult solid organ transplant recipients exhibit significant levels of executive dysfunction, with implications for decision-making, regimen adherence, and transition to adult transplant care. CONCLUSION: Transplantation may reduce the risk for poor long-term neurocognitive effects, yet adolescent transplant recipients remain at increased risk, particularly in executive functioning, which has implications for adherence and transition to adulthood. Baseline and follow-up assessments for youth with end-stage organ disease and transplant are important for the monitoring of neurocognitive development and may be used to mitigate risk for low adherence to post-transplantation treatment regimens and reduce barriers to transitioning to adult transplant care.
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Função Executiva , Transplante de Órgãos , Humanos , Adolescente , Transplantados , Fatores de Risco , Cognição , Transição para Assistência do Adulto , Adulto Jovem , Testes NeuropsicológicosRESUMO
OBJECTIVES: Dissatisfaction with one's body can be distressing; youth with inflammatory bowel disease (IBD) may be at increased risk for body image dissatisfaction given disease symptoms and treatment side effects. Yet, no studies have examined body image dissatisfaction over time in youth with IBD and whether depressive symptoms are associated with change in dissatisfaction. METHODS: Fifty-seven pediatric participants (8-17 years old) newly diagnosed with IBD were enrolled. Youth completed questionnaires assessing body image dissatisfaction and depressive symptoms shortly after diagnosis (Time 1) and 12 months later (Time 2). Multilevel longitudinal modeling was used to test the extent to which body image dissatisfaction changed across the first year of diagnosis and to test change in body image dissatisfaction as a function of depressive symptoms. RESULTS: Findings indicated significant between- and within-person variance in body image dissatisfaction over the 12 months, yet the sample as a whole did not report significant changes in dissatisfaction from Time 1 to Time 2. Children reporting depressive symptoms greater than their individual average over time reported greater body image dissatisfaction. Between-person variation in depressive symptoms demonstrated a significant interaction with time. As an individual's depressive symptoms exceeded the group average, their body image dissatisfaction increased, although less drastically as time since diagnosis progressed. CONCLUSIONS: Findings suggest that body image dissatisfaction is a complex and dynamic construct across youth and that interventions for pediatric IBD patients need to be tailored to the needs of individuals. Methods for assessing body image dissatisfaction efficiently and repeatedly across multiple visits are provided.
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Insatisfação Corporal , Doenças Inflamatórias Intestinais , Adolescente , Humanos , Criança , Doenças Inflamatórias Intestinais/complicações , Inquéritos e Questionários , Depressão/etiologia , Imagem CorporalRESUMO
OBJECTIVE: Culture and diversity-related training is critical to the development of competent pediatric psychologists. Evaluation of training efforts have been conducted at the program level, yet evaluation of trainee experiences in culture and diversity-related training remains unassessed. This trainee-led study was the first formal assessment of pediatric psychology trainee experiences of culture and diversity-related training and the impact of training on their own cultural humility. METHODS: Study overview and a survey link was distributed across 2 listservs associated with the American Psychological Association (Division 53, Division 54) and sent directly to directors of graduate, internship, and fellowship training programs with a request to share with trainees. Surveys assessing integration of cultural training and trainee cultural humility were completed. Trainees also provided qualitative feedback regarding their multicultural training and development. RESULTS: Pediatric psychology trainees (N = 90) reported inconsistent integration of culture and diversity topics into their training. Of the 34 training areas assessed, 10 were perceived as thoroughly integrated into formal training by at least half of the respondents. Trainees often sought independent cultural training outside of their programs, and no relationship was detected between perceived integration of cultural training and trainee cultural competence. DISCUSSION: Results indicate room for improvement regarding integration of cultural training and a need to better understand driving forces behind trainees independently seeking training outside of their formal training programs. Moreover, understanding the aspects of training that are most contributory to trainee development is needed given that no relationship between training and development emerged in the current study.
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Mental health (MH) is an important, yet understudied area of care for patients with congenital heart disease (CHD). Pediatric subspecialty fellows believe MH should be within their scope of practice, but few feel confident in their ability to appropriately screen, evaluate, manage, and make treatment referrals for youth with CHD and concurrent MH concerns. A 6-session, didactic-based curriculum was designed by an interprofessional team of experts. It was administered to pediatric cardiology fellows over 9 months during two academic years. Topics included the following: Introduction to MH and CHD, MH Screening and Clinic-Based Interventions, Psychopharmacology, Delirium, Trauma-Informed Care, and Adult CHD and Transitional Care. An investigator-designed survey was developed to assess fellow comfort with MH knowledge, screening, and treatment recommendation domains. Twenty-three fellows participated with 14 completing the pre-post survey (58% participation, 11/17 in year 1, 3/6 in year 2). Most participants were in their first year of training (9/14, 57%). Overall, fellow comfort with MH topics increased significantly (mean score 2.89 ± 0.46 vs. 3.4 ± 0.4, p = 0.0005), with improved comfort in the MH knowledge (p = 0.003) and treatment recommendation domains (p = 0.001). A didactic-based MH curriculum improves the comfort of pediatric cardiology fellows to address the MH concerns of their patients. The topics in this curriculum will continue to be refined over time and could be generalized to training programs, both nationally and across pediatric specialties, to improve MH care for high-risk populations.
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BACKGROUND: The study of psychological well-being and related resilient outcomes is of increasing focus in cardiovascular research. Despite the critical importance of psychological well-being and related resilient outcomes in promoting optimal cardiac health, there have been very few psychological interventions directed towards children with heart disease. This paper describes the development and theoretical framework of the WE BEAT Wellbeing Education Program, a group-based psychoeducation and coping skills training intervention designed to improve psychological well-being and resilience in adolescents with paediatric heart disease. METHODS: Program development was informed by patient and family needs and input gathered via large, international survey methods as well as qualitative investigation, a theoretical framework, and related resilience intervention research. RESULTS: An overview of the WE BEAT intervention components and structure of the programme is provided. CONCLUSIONS: The WE BEAT Wellbeing Education Program was developed as one of the first resiliency-focused interventions in paediatric heart disease with an overall objective to foster positive psychological well-being and resilient outcomes through a health promotion and prevention lens in an accessible format while providing access to safe, peer-to-peer community building. Feasibility pilot results are forthcoming. Future directions include mobile app-based delivery and larger-scale efficacy and implementation trials.
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BACKGROUND: Equitable access to pediatric organ transplantation is critical, although risk factors negatively impacting pre- and post-transplant outcomes remain. No synthesis of the literature on SDoH within the pediatric organ transplant population has been conducted; thus, the current systematic review summarizes findings to date assessing SDoH in the evaluation, listing, and post-transplant periods. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases. RESULTS: Ninety-three studies were included based on pre-established criteria and were reviewed for main findings and study quality. Findings consistently demonstrated disparities in key transplant outcomes based on racial or ethnic identity, including timing and likelihood of transplant, and rates of rejection, graft failure, and mortality. Although less frequently assessed, variations in outcomes based on geography were also noted, while findings related to insurance or SES were inconsistent. CONCLUSION: This review underscores the persistence of SDoH and disparity in equitable transplant outcomes and discusses the importance of individual and systems-level change to reduce such disparities.
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Transplante de Órgãos , Determinantes Sociais da Saúde , Criança , Humanos , Fatores de RiscoRESUMO
BACKGROUND: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants. METHODS: Fifty-three adolescents (Mage = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF. RESULTS: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001). CONCLUSIONS: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth.
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Função Executiva , Transplante de Órgãos/psicologia , Personalidade , Psicologia do Adolescente , Transtornos de Estresse Pós-Traumáticos/etiologia , Transplantados/psicologia , Adolescente , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: Adolescent and young adult (AYA) solid organ transplant recipients experience worsening medical outcomes during transition to adult healthcare. Current understanding and definitions of transition success emphasize first initiation of appointment attendance in adult healthcare; however, declines in attendance over time after transfer remain possible, particularly as AYAs are further removed from their pediatric provider and assume greater independence in their care. METHODS: The current study assessed health-care utilization, medical outcomes, and transition success among 49 AYA heart, kidney, or liver recipients recently transferred to adult healthcare. Differences in outcomes were examined along two transition success criteria: (1) initial engagement in adult healthcare within 6 or 12 months of last pediatric appointment and (2) retention in adult healthcare over 3 years following last pediatric appointment. Growth curve modeling examined change in attendance over time. RESULTS: Successful retention in adult healthcare was significantly related to more improved clinical outcomes, including decreased number and duration of hospitalizations and greater medication adherence, as compared to initial engagement. Significant declines in appointment attendance over 3 years were noted, and individual differences in declines were not accounted for by age at transfer or time since transplant. CONCLUSIONS: Findings underscore support for AYAs after transfer, as significant declines in attendance were noted after initiating adult care. Clinical care teams should examine transition success longitudinally to address changes in health-care utilization and medical outcomes. Attention to interventions and administrative support aimed at maintaining or increasing attendance and identifying risk factors and intervention for unsuccessful transition is warranted.
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Transplante de Órgãos , Transição para Assistência do Adulto , Adolescente , Criança , Humanos , Adesão à Medicação , Transplantados , Adulto JovemRESUMO
OBJECTIVE: A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. METHODS: Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. RESULTS: Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to -0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02-3.01). Significant variability and declines in parenting stress were observed across time (ts = -2.28 and -3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = -2.98 and -5.97). CONCLUSION: Caregivers' parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child's HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.
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Doenças Inflamatórias Intestinais , Poder Familiar , Adolescente , Criança , Feminino , Humanos , Poder Familiar/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Cuidadores/psicologia , Pais/psicologia , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/psicologia , Doença CrônicaRESUMO
Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre-established inclusion criteria. Main findings and study quality were reviewed. Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well-being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health-related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. Patients and families on VAD therapy experience significant difficulties in psychological well-being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long-term VAD therapy.
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Insuficiência Cardíaca/cirurgia , Coração Auxiliar/psicologia , Qualidade de Vida/psicologia , Adolescente , Cuidadores/psicologia , Criança , Pré-Escolar , Família/psicologia , Indicadores Básicos de Saúde , Insuficiência Cardíaca/psicologia , Humanos , Lactente , Apoio Social , Estresse Psicológico/etiologia , Resultado do TratamentoRESUMO
OBJECTIVE: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. METHODS: The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). RESULTS: Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. CONCLUSION: Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.
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Adesão à Medicação , Personalidade , Transplantados , Adolescente , Feminino , Humanos , Masculino , Autorrelato , Adulto JovemRESUMO
OBJECTIVE: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants. METHODS: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.
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Cuidadores , Adesão à Medicação , Transplante de Órgãos , Adolescente , Adulto , Criança , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Parents and siblings of children with chronic illnesses are at increased risk for experiencing psychosocial difficulties. Therapeutic recreation camps have become increasingly popular among these families. The current systematic literature review provides a synthesis of research on how these camps impact the parents and siblings of children facing a variety of chronic health conditions. METHODS: Databases searched: PubMed, PsycInfo, SportDISCUS, and Health Source Nursing/Academic Edition. Inclusion criteria included publication in a peer-reviewed journal between January 2000 and May 2018, written in the English language, and assessment of parent, sibling, or family outcomes. RESULTS: Twenty-one studies were included. Results indicated that camp attendance relates to positive changes in parent and sibling psychosocial outcomes. Additionally, parents report camp to be a place of social support and respite from daily life, and siblings find camp to be enjoyable and a place of belonging. Given the limited number of methodologically sound studies examining family functioning, it is not yet clear the extent to which camp influences family-level outcomes. CONCLUSION: Overall, camp appears to have a positive impact on parents and siblings across chronic illness populations. Future research should specifically assess family outcomes, including communication and family functioning, and the impact of incorporating well-defined interventions and education programming into the traditional therapeutic recreation camp experience.
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Doença Crônica/psicologia , Doença Crônica/reabilitação , Pais/psicologia , Recreação/psicologia , Irmãos/psicologia , Apoio Social , Adolescente , Criança , Família/psicologia , Feminino , HumanosRESUMO
Across pediatric organ transplant populations, patient and family psychosocial functioning is associated with important health-related outcomes. Research has suggested that pediatric heart transplant recipients and their families are at increased risk for adverse psychosocial outcomes; however, recent investigation of psychosocial functioning in this population is lacking. This study aimed to provide a contemporary characterization of psychosocial functioning in pediatric heart transplant recipients and their families. Associations between psychosocial function, demographic variables, and transplant-related variables were investigated. Fifty-six parents/guardians of pediatric heart transplant recipients completed a comprehensive psychosocial screening measure during transplant follow-up clinic visits. Descriptive statistics, correlational analyses, and independent samples t tests were performed. Forty percent of pediatric heart transplant recipients and their families endorsed clinically meaningful levels of total psychosocial risk. One-third of patients presented with clinically significant psychological problems per parent report. Psychosocial risk was unassociated with demographic or transplant-related factors. Despite notable improvements in the survival of pediatric heart transplant recipients over the past decade, patients and families present with sustained psychosocial risks well beyond the immediate post-transplant period, necessitating mental health intervention to mitigate adverse impact on health-related outcomes.
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Família/psicologia , Transplante de Coração/psicologia , Transtornos Mentais/etiologia , Complicações Pós-Operatórias , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , Transtornos Mentais/diagnóstico , Complicações Pós-Operatórias/diagnóstico , Qualidade de Vida/psicologia , Medição de Risco , Fatores de Risco , Adulto JovemRESUMO
The process of pediatric solid organ transplantation (SOT) places new and increased stressors on patients and family members. Measures of family functioning may predict psychological and health outcomes for pediatric patients and their families, and provide opportunity for targeted intervention. This systematic review investigated parent and family functioning and factors associated with poorer functioning in the pediatric SOT population. Thirty-seven studies were identified and reviewed. Studies featured a range of organ populations (eg, heart, liver, kidney, lung, intestine) at various stages in the transplant process. Findings highlighted that parents of pediatric SOT populations commonly report increased stress and mental health symptoms, including posttraumatic stress disorder. Pediatric SOT is also associated with increased family stress and burden throughout the transplant process. Measures of parent and family functioning were associated with several important health-related factors, such as medication adherence, readiness for discharge, and number of hospitalizations. Overall, findings suggest that family stress and burden persists post-transplant, and parent and family functioning is associated with health-related factors in SOT, highlighting family-level functioning as an important target for future intervention.
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Cuidadores , Família , Transplante de Órgãos/psicologia , Pais/psicologia , Estresse Psicológico , Criança , Saúde da Família , Feminino , Hospitalização , Humanos , Masculino , Adesão à Medicação , Poder Familiar , Alta do Paciente , Período Pós-Operatório , Transtornos de Estresse Pós-Traumáticos/epidemiologiaAssuntos
Transplante de Órgãos , Crescimento Psicológico Pós-Traumático , Criança , Família , HumanosRESUMO
The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.
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Transplante de Coração , Transplante de Órgãos , Criança , Humanos , Neuropsicologia , Qualidade de Vida/psicologia , Transplante de Órgãos/efeitos adversos , Transplante de Órgãos/psicologia , Ajustamento SocialRESUMO
OBJECTIVE: Youth newly diagnosed with inflammatory bowel diseases (IBD) may be physically impacted by their disease and experience increased psychological stress. Stress is known to relate to greater reported IBD symptoms, but little is known about the longitudinal experience of stress and clinical symptoms of youth newly diagnosed with IBD. METHODS: Fifty-seven children (Mage = 14.26, range 8-17 years) diagnosed with IBD completed measures assessing psychological stress (PROMIS Psychological Stress Experiences), depressive symptoms (Children's Depression Inventory-2), and clinical disease symptoms (Self-Report Disease Activity) within 45 days of diagnosis and at 6-month and 1-year follow-ups. Group-based trajectory modeling was used to describe trajectory patterns of psychological stress over the first year of diagnosis and logistic regression identified predictors of group membership. RESULTS: Two distinct groups of psychological stress trajectories were identified: 1) low prevalence over the first year of diagnosis (51%) and 2) moderate and increasing prevalence (49%). Membership in the moderate and increasing psychological stress group was associated with female sex and greater IBD symptoms at diagnosis. CONCLUSION: Findings suggest roughly half of youth newly diagnosed with IBD would likely benefit from multidisciplinary assessment and intervention to promote adaptive stress management, given moderate and increasing stress levels. Future research is needed to evaluate specific intervention techniques most helpful to youth with IBD.
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Depressão , Doenças Inflamatórias Intestinais , Criança , Humanos , Feminino , Adolescente , Depressão/diagnóstico , Depressão/psicologia , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Modelos Logísticos , AutorrelatoRESUMO
Objective: Most of the transition literature examines adolescents and young adults with special healthcare needs, though many youth will eventually transition to adult healthcare providers, regardless of medical complexity. This study addresses this gap by examining transition needs and experiences specifically within a college student sample of emerging adults without complex medical needs. Methods: 108 college students (Mage=20.93 years, SD=1.14) completed interviews and questionnaires regarding transition. The most difficult and easiest aspects of healthcare self-management were thematically coded. Differences in questionnaires were assessed across sources of transition education. Results: 52% of college students reported receiving education about managing healthcare from medical providers versus 95% from caregivers. Notably, 57% desired more support. Those receiving medical provider education reported higher responsibility. Students reported most difficulty managing health insurance. Results were similar across racial and ethnic groups and genders. Conclusions: Gaps in transition preparation include low rates of medical provider education and support regarding health insurance. College students receiving education from medical providers reported greater healthcare responsibility. Provider-led transition education is needed for college students without complex medical needs. Implications for Impact Statement: This study suggests that college students without complex medical conditions experience gaps in transition preparation. Although half reported talking to their medical provider about transition to adult care, many desired more support, with the greatest difficulty reported in learning to manage health insurance.