Abstract Purpose To examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains. Methods Participants ( N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare. Results Higher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02–1.10, 95% CI range [1.004–1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58–3.28 95% CI range [1.18–4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46–0.64, 95% CI range [0.34–0.86]). Conclusions Study results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes.
Abstract Objective Population-level data on sickle cell disease (SCD) are sparse in the United States. The Centers for Disease Control and Prevention (CDC) is addressing the need for SCD surveillance through state-level Sickle Cell Data Collection Programs (SCDC). The SCDC developed a pilot common informatics infrastructure to standardize processes across states. Materials and Methods We describe the process for establishing and maintaining the proposed common informatics infrastructure for a rare disease, starting with a common data model and identify key data elements for public health SCD reporting. Results The proposed model is constructed to allow pooling of table shells across states for comparison. Core Surveillance Data reports are compiled based on aggregate data provided by states to CDC annually. Discussion and Conclusion We successfully implemented a pilot SCDC common informatics infrastructure to strengthen our distributed data network and provide a blueprint for similar initiatives in other rare diseases.
This article examines a potential unintended consequence of the mandated Medicaid citizenship verification requirements of the 2005 Deficit Reduction Act (DRA). We investigate whether or not these new rules led to an increase in the Medicaid exit rate among enrollees using state administrative data from Georgia. We do this by comparing the exit rate for children enrolled in Medicaid whose first coverage recertification occurs just after implementation of the DRA (which we refer to as a “high impact” first recertification) with those whose first recertification occurs just prior (which we refer to as a “low impact” first recertification). Our analysis suggests that children in the high‐impact first recertification group were about 2 percentage points more likely to exit Medicaid than those in the low‐impact group. Furthermore, these additional exits occurred in racial and ethnic groups more likely to be citizens than noncitizens and prereform estimates suggest that there were very few (roughly 0.10%) noncitizen Medicaid enrollees to begin with. Taken together, our results suggest that the DRA ‐enhanced citizenship verification rules led to an increase in Medicaid disenrollment, and thus a reduction in coverage, among citizens. ( JEL I18, I38, J13)
This cohort study assesses the level of opioid use, number of vaso-occlusive crises, and days’ supply of opioids among opioid-naive pediatric patients.
Oncology teams are challenged by BO, which may be alleviated by meaningful recognition. In this study, firgun-altruistic acknowledgment-was implemented on a pediatric hematopoietic cell transplant unit to evaluate its impact on staff and work environment.In this longitudinal, mixed-methods pilot study, interdisciplinary inpatient hematopoietic cell transplant providers received web-based firgun education. Electronic administration of validated surveys occurred at baseline and 8 weeks, including Perceived Stress Scale, Professional Quality of Life Scale, Maslach Burnout Inventory, Workplace Civility Index, Areas of Work Life Survey, and WHO-5. Weekly e-mails reminded participants to practice and log firgun. Wilcoxon signed test for paired data compared pre/post results. Interviews conducted at project completion were coded using MaxQDA software.Forty-two participants enrolled; 25 completed pre/post surveys; eight were interviewed. At study end, participants reported feeling less nervous and stressed (P = .008), and less difficulty coping (P = .01; Perceived Stress Scale), while noting increased acknowledgment of others' work (P = .04) and seeking constructive feedback (P = .04; Workplace Civility Index). Marked BO was not evident overall on the Maslach Burnout Inventory; however, emotional exhaustion subscale mean (SD) scores improved from pre (19.4 [8.6]) to post (16 [6.3; P = .02]) and individual items illustrated decreased fatigue (P = .008), frustration (P = .04), and feeling "at the end of my rope" (P = .001). Postintervention participants noted increased receipt of recognition (P = .02; Areas of Work Life Survey), decreased feeling "bogged down" (P = .02), decreased affective stress (P = .04), and negative pre-occupations (P = .04; Professional Quality of Life Scale). Qualitative analysis revealed themes of improved confidence at work and enhanced feelings of trust and teamwork.Firgun is a tool that can potentially reduce BO and stress in interdisciplinary providers, facilitate teamwork, and promote positive work environments in clinical oncology and beyond.
Objective . This study compared preventive medical and dental visits of Georgia children in foster care with other children enrolled in Medicaid to determine if utilization differed. Methods . Two logistic regressions estimated the likelihood of an annual Health Check screening and the likelihood of at least one dental visit. Results . Compared with children in foster care, children in the adoption assistance ([AOR] .37, 95% confidence interval [CI] = 0.35-0.40), SSI (AOR .37, 95% CI = 0.35-0.38) and low-income (AOR .40, 95% CI = 0.39-0.42) Medicaid categories were less likely to receive an annual Health Check screening. Children in adoption assistance were also less likely to have a dental visit during the study period. Conclusion . Policies require a Health Check visit upon placement into foster care and annual check-ups consistent with pediatric guidelines; we found more Early and Periodic Screening, Detection, and Treatment screenings for foster care children in Georgia than for other children receiving Medicaid.
Sickle cell disease (SCD) is an inherited blood disorder that affects the shape and function of red blood cells. It is most common among people of African descent and affects one of every 365 Afric...
Many states require prescribers to check a prescription drug monitoring program (PDMP) database before prescribing controlled substances, which may affect access and health outcomes for individuals with sickle cell disease (SCD). Our study objective was to examine acute care trends before and after PDMP implementation among people with SCD. We carried out a retrospective longitudinal cohort study of 13,698 individuals with confirmed or probable SCD in the Georgia Sickle Cell Data Collection program from 2010-2019. Primary outcomes were monthly rates of emergency department (ED) visits per 1,000 people with SCD; 3-day ED revisits per 1,000 visits; inpatient discharges per 1,000 people with SCD; 30-day readmissions per 100 discharges; and patient days hospitalized per 100 discharges. We observed that, at the start of the PDMP mandate, the volume of ED visits was 12.7% lower during the mandatory PDMP period (RR=0.873 [95% CI, 0.843-0.904]) compared to what pre-PDMP trends would have predicted. Three-day ED revisits followed a similar pattern. No associations were observed with inpatient hospitalization rate. There was a 0.7% monthly increase in readmissions during the PDMP mandate (IRR=1.007, 1.002-1.013]) compared to 0.1% before the PDMP (IRR=1.001 [1.000-1.001]). The volume of patient days was higher during the PDMP phase-in period but no different during the mandate. ED use by people with SCD decreased after PDMP implementation, and there was an uptick in the monthly rate of increase in 30-day readmissions after the PDMP mandate. Further research into the impact of opioid control policies on people with SCD is warranted.
Population-based surveillance data from California and Georgia for years 2004 through 2008 were linked to state death record files to determine the all-cause death rate among 12,143 patients identified with sickle cell disease (SCD).
