RESUMO
OBJECTIVES: To describe patterns of primary and specialty care delivery in pediatric patients with inflammatory bowel diseases (IBD), delineate which members of the healthcare team provided services, and identify gaps in care. STUDY DESIGN: Cross-sectional survey of parents of children (2-17 years) with IBD and adolescents with IBD (13-17 years) at a free-standing, quaternary children's hospital regarding healthcare receipt. RESULTS: There were 161 parents and 84 adolescents who responded to the survey (75% and 60% response, respectively). The mean patient age was 14 ± 3 years, 51% were male, 80% had Crohn's disease, 16% ulcerative colitis, and 4% IBD-unspecified. Most parents were white (94%), living in a suburban setting (57%). Sixty-nine percent of households had ≥1 parent with a bachelor's degree or higher. Most had private insurance (43%) or private primary with public secondary insurance (34%). Most patients received annual check-ups (70%), vaccinations (78%), and care for minor illnesses (74%) from their primary care provider. Check-ups for gastrointestinal symptoms, IBD monitoring, and changes in type/dosing of IBD treatment were provided by their gastroenterology provider (77%, 93%, and 86% of patients, respectively). Discussions about family/peer relationships, school/extracurricular activities, and mood were not addressed in 30%-40% of participants. Adolescents frequently reported that no one had talked to them about substance use (40%), sexual health (50%), or body image (60%); 75% of adolescents and 76% of their parents reported that no one had discussed transitioning to an adult provider. CONCLUSIONS: There were gaps in the psychosocial care of pediatric patients with IBD. Coordinated, comprehensive care delivery models are needed.
Assuntos
Colite Ulcerativa/terapia , Assistência Integral à Saúde/normas , Doença de Crohn/terapia , Adolescente , Criança , Pré-Escolar , Colite Ulcerativa/psicologia , Doença de Crohn/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pais/psicologia , Relações Profissional-Paciente , Inquéritos e QuestionáriosRESUMO
Shared decision making (SDM) is central to patient-centered medicine and has the potential to improve outcomes for pediatric patients with inflammatory bowel diseases. We surveyed specialists about their use of SDM in the decision to start a tumor necrosis factor-α inhibitor in pediatric patients. Results were compared between those who reported using SDM and those who did not. Of 209 respondents, 157 (75%) reported using SDM. Physician/practice characteristics were similar between users and nonusers. There were no statistically significant differences between groups in the components deemed important to the decision-making process nor the number of barriers or facilitators to SDM. Exploratory analyses suggested that physicians using SDM were more accepting of adolescent involvement in the decision-making process. Our results question the effectiveness of using reported barriers and facilitators to guide interventions to improve use of SDM, and suggest further work is needed to understand the adolescent role in decision making.
Assuntos
Artrite Juvenil/tratamento farmacológico , Tomada de Decisões , Doenças Inflamatórias Intestinais/tratamento farmacológico , Participação do Paciente , Fator de Necrose Tumoral alfa/uso terapêutico , Adolescente , Adulto , Idoso , Atitude do Pessoal de Saúde , Estudos de Casos e Controles , Feminino , Gastroenterologia/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Pais/psicologia , Relações Médico-Paciente , Reumatologia/métodos , Inquéritos e QuestionáriosRESUMO
UNLABELLED: The pathophysiology of atypical fractures is unknown. We compared characteristics of patients with atypical femoral fractures and hip fractures in typical locations of the femur. Patients with atypical fracture reported a longer duration of use of bisphosphonates, had higher body mass index, and higher total hip bone mineral density. Further studies are needed. INTRODUCTION: This study aims to describe the characteristics of patients with typical and atypical fractures of the femur assessed in a tertiary care osteoporosis center. METHODS: We abstracted clinical, laboratory, and radiographic data on subjects with a history of a low-impact fracture at the femur and/or hip (confirmed by review of radiograph and/or radiology report) from January 2008 to October 2011. Available radiographs were reviewed and fracture categorized as typical or atypical by a radiologist blinded to the original diagnosis. RESULTS: Radiology reports were available for 72 subjects: 40 hip fractures in typical locations (typical fracture), 16 atypical femoral fracture (atypical fracture), and 16 were excluded. While both those with typical and atypical fractures reported taking bisphosphonates at the time of fracture, duration of use was longer with atypical fractures (104.2±42.0 months) compared with typical (71.1±62.8 months) (p=0.04). Body mass index (BMI) was higher in patients with atypical fractures (26.2±3.2 kg/m2) than in those with typical (23.1±4.3 kg/m2) (p=0.006). Total bone mineral density (BMD) was higher in patients with atypical fracture (0.795±0.102) versus typical (0.686±0.130) (p=0.003) Previous history of cancer was reported by 7 of 16 patients with atypical and 7 of 40 patients with typical fracture (p=0.04). CONCLUSIONS: Compared to those with typical fractures, patients with atypical fracture report a longer duration of use of bisphosphonates, higher BMI, and higher total hip BMD. Future studies should examine if these differences contribute to the pathophysiology of atypical fractures.