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Background Children with sickle cell anemia are at risk for stroke. Ischemic stroke risk can be identified among children ages 2–16 years with sickle cell anemia using transcranial Doppler ultrasound. Despite strong recommendations for transcranial Doppler screening in guidelines released by the National Heart, Lung, and Blood Institute, implementation of transcranial Doppler screening in sickle cell anemia remains suboptimal. The purpose of this study was to identify barriers and facilitators to transcranial Doppler screening in a large national consortium to inform subsequent implementation interventions. Methods A qualitative descriptive approach was used to conduct 52 semi-structured interviews with a sample of patients with sickle cell anemia, their parents or primary caregivers, and healthcare providers dispersed across the United States. Interviews took place from September 2018 through March 2019. Directed content analysis was conducted with an adapted version of the Multilevel Ecological Model of Health as an initial coding framework, completed July 2019. Frequency analysis was conducted to determine predominant barrier and facilitator themes. Results Fourteen barrier themes and 12 facilitator themes emerged representing all levels of the ecological framework. Two barrier themes (Logistical Difficulties and Competing Life Demands and Gaps in Scheduling and Coordination), and 5 facilitator themes (Coordination, Scheduling and Reminders; Education and Information; Provider and Staff Investment and Assistance; Positive Patient Experience; and Convenient Location) were predominant. Conclusions Barriers and facilitators to transcranial Doppler screening in children with sickle cell anemia are complex and occur across multiple ecological levels. One barrier theme and 3 facilitator themes were found to be optimal to address in subsequent implementation interventions.

Background Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the unavailability of descriptions of the selection process and copies of final data collection tools, coupled with incomplete representation of the SCD population hampers further research progress. This manuscript describes the SCDIC (Sickle Cell Disease Implementation Consortium) Registry development and makes the SCDIC Registry baseline and first follow-up data collection forms available for other SCD research efforts. Results Study data on 2400 enrolled patients across eight sites was stored and managed using Research Electronic Data Capture (REDCap). Standardized data collection instruments, recruitment and enrollment were refined through consensus of consortium sites. Data points included measures taken from a variety of validated sources (PHENX, PROMIS and others). Surveys were directly administered by research staff and longitudinal follow-up was coordinated through the DCC. Appended registry forms track medical records, event-related patient invalidation, pregnancy, lab reporting, cardiopulmonary and renal functions. Conclusions The SCDIC Registry strives to provide an accurate, updated characterization of the adult and adolescent SCD population as well as standardized, validated data collecting tools to guide evidence-based research and practice.

Hormone receptor-positive (HR+) cancers account for most breast cancer diagnoses and deaths. Among survivors with HR + breast cancers, endocrine therapy (ET) reduces 5-year risk of recurrence by up to 40 %. Observational studies in Medicare- and privately-insured survivors suggest underutilization of ET. We sought to characterize ET use in a low-income Medicaid-insured population in North Carolina. Medicaid claims data were matched to state cancer registry records for survivors aging 18–64 diagnosed with stage 0–II HR + breast cancer from 2003 to 2007, eligible for ET, and enrolled in Medicaid for at least 12 of 15 months post-diagnosis. We used multivariable logistic regression to model receipt of any ET medication during 15 months post-diagnosis controlling for age, race, tumor characteristics, receipt of other treatments, comorbidity, residence, reason for Medicaid eligibility, involvement in the Breast and Cervical Cancer Control Program (BCCCP), and diagnosis year. Of 222 women meeting the inclusion criteria, only 50 % filled a prescription for ET. Involvement in the BCCCP and earlier year of diagnoses were associated with significantly higher odds of initiating guideline-recommended ET (adjusted odds ratio [AOR] for the BCCCP 3.76, 95 % confidence interval [CI] 1.67–8.48; AOR for 2004 relative to 2007 2.80, 95 % CI 1.03–7.62; AOR for 2005 relative to 2007 2.11, 95 % CI 0.92–4.85). Results suggest substantial underutilization of ET in this population. Interventions are needed to improve timely receipt of ET and to better support survivors taking ET. Low-income survivors should be counseled on the importance of ET and offered support services to promote initiation and long-term adherence.

Dissemination of evidence-based programs and policies is a critical final step in reducing the burden of cancer in the general public. Yet, we have not been fully successful to date in improving clinical or public health practice by disseminating programs found to be effective in research. Therefore, research is needed into the dissemination process and outcomes to enable better efforts in the future. This paper explores the definitions and models used for dissemination, the designs of dissemination studies, and possible research questions in dissemination research, all focused on cancer prevention and control. We hope that this paper will encourage dissemination research in our field.