A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.

OBJECTIVE: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center. METHODS: We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. RESULTS: We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. CONCLUSIONS: Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.

Comprehensive Curriculum for Internal Medicine Residents on Primary Care of Patients Identifying as Lesbian, Gay, Bisexual, or Transgender.

Introduction: Significant gaps remain in the training of health professionals regarding the care of individuals who identify as lesbian, gay, bisexual, and transgender (LGBT). Although curricula have been developed at the undergraduate medical education level, few materials address the education of graduate medical trainees. The purpose of this curriculum was to develop case-based modules targeting internal medicine residents to address LGBT primary health care. Methods: We designed and implemented a four-module, case-based, interactive curriculum at one university's internal medicine residency program. The modules contained facilitator and learner guides and addressed four main content areas: understanding gender and sexuality; performing a sensitive history and physical examination; health promotion and disease prevention; and mental health, violence, and reproductive health. Knowledge, perceived importance, and confidence were assessed before and after each module to assess curricular effectiveness and acceptability. General medicine faculty delivered these modules. Results: Perceived importance of LGBT topics was high at baseline and remained high after the curricular intervention. Confidence significantly increased in many areas, including being able to provide resources to patients and to institute gender-affirming practices (p < .05). Knowledge improved significantly on almost all topics (p < .0001). Faculty felt the materials gave enough preparation to teach, and residents perceived that the faculty were knowledgeable. Discussion: This resource provides an effective curriculum for training internal medicine residents to better understand and feel confident addressing LGBT primary health care needs. Despite limitations, this is an easily transferable curriculum that can be adapted in a variety of curricular settings.

Drug-resistant epilepsy in children with partial onset epilepsy treated with carbamazepine.

OBJECTIVE: To evaluate the outcome, including drug-resistant epilepsy (DRE) in children with newly diagnosed partial onset epilepsy treated with carbamazepine (CBZ). METHODS: A retrospective medical records review and telephone questionnaire were undertaken on a total of 100 subjects. RESULTS: Long-term follow-up was obtained on 79 children with a mean duration of 7.1 years from CBZ initiation. A total of 66 (83.5%) subjects achieved 2-year seizure remission, 48 (72.7%) subjects did so with CBZ monotherapy. Seven (10.6%) had seizure recurrence after 2-year seizure remission. DRE was diagnosed in seven (8.9%) subjects and five subjects had epilepsy surgery. The mean duration from seizure onset to epilepsy surgery was 5.3 (±2.1) years. Contributing factors for the prolonged duration from seizure onset to epilepsy surgery were identified including: relapsing-remitting course of seizure, family reluctance for epilepsy surgery and uncontrolled psychological problems. CONCLUSIONS: Over 80% of children with newly diagnosed partial onset epilepsy who were initially treated with CBZ achieved 2-year seizure remission, and more than 70% of this group did so with CBZ monotherapy. The majority of these patients maintained seizure remission overtime. However, 8.9% of this population met the criteria for DRE and most of them had epilepsy surgery. The duration from seizure onset to epilepsy surgery is an important potential area for improvement in DRE patient care.