Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

BACKGROUND: For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. METHODS: We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. RESULTS: Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. CONCLUSIONS: IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Paging "Dr. Google": does technology fill the gap created by the prenatal care visit structure? Qualitative focus group study with pregnant women.

BACKGROUND: The prenatal care visit structure has changed little over the past century despite the rapid evolution of technology including Internet and mobile phones. Little is known about how pregnant women engage with technologies and the interface between these tools and medical care, especially for women of lower socioeconomic status. OBJECTIVE: We sought to understand how women use technology during pregnancy through a qualitative study with women enrolled in the Women, Infants, and Children (WIC) program. METHODS: We recruited pregnant women ages 18 and older who owned a smartphone, at a WIC clinic in central Pennsylvania. The focus group guide included questions about women's current pregnancy, their sources of information, and whether they used technology for pregnancy-related information. Sessions were audiotaped and transcribed. Three members of the research team independently analyzed each transcript, using a thematic analysis approach. Themes related to the topics discussed were identified, for which there was full agreement. RESULTS: Four focus groups were conducted with a total of 17 women. Three major themes emerged as follows. First, the prenatal visit structure is not patient-centered, with the first visit perceived as occurring too late and with too few visits early in pregnancy when women have the most questions for their prenatal care providers. Unfortunately, the educational materials women received during prenatal care were viewed as unhelpful. Second, women turn to technology (eg, Google, smartphone applications) to fill their knowledge gaps. Turning to technology was viewed to be a generational approach. Finally, women reported that technology, although frequently used, has limitations. CONCLUSIONS: The results of this qualitative research suggest that the current prenatal care visit structure is not patient-centered in that it does not allow women to seek advice when they want it most. A generational shift seems to have occurred, resulting in pregnant women in our study turning to the Internet and smartphones to fill this gap, which requires significant skills to navigate for useful information. Future steps may include developing interventions to help health care providers assist patients early in pregnancy to seek the information they want and to become better consumers of Internet-based pregnancy resources.