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ImportancePain related to sickle cell disease (SCD) is complex and associated with social determinants of health. Emotional and stress-related effects of SCD impact daily quality of life and the frequency and severity of pain.ObjectiveTo explore the association of educational attainment, employment status, and mental health with pain episode frequency and severity among individuals with SCD.Design, setting, and participantsThis is a cross-sectional analysis of patient registry data collected at baseline (2017-2018) from patients treated at 8 sites of the US Sickle Cell Disease Implementation Consortium. Data analysis was performed from September 2020 to March 2022.Main outcomes and measuresElectronic medical record abstraction and a participant survey provided demographic data, mental health diagnosis, and Adult Sickle Cell Quality of Life Measurement Information System pain scores. Multivariable regression was used to examine the associations of education, employment, and mental health with the main outcomes (pain frequency and pain severity).ResultsThe study enrolled a total of 2264 participants aged 15 to 45 years (mean [SD] age, 27.9 [7.9] years; 1272 female participants [56.2%]) with SCD. Nearly one-half of the participant sample reported taking daily pain medication (1057 participants [47.0%]) and/or hydroxyurea use (1091 participants [49.2%]), 627 participants (28.0%) received regular blood transfusion, 457 (20.0%) had a depression diagnosis confirmed by medical record abstraction, 1789 (79.8%) reported severe pain (rated most recent pain crises as ≥7 out of 10), and 1078 (47.8%) reported more than 4 pain episodes in the prior 12 months. The mean (SD) pain frequency and severity t scores for the sample were 48.6 (11.4) and 50.3 (10.1), respectively. Educational attainment and income were not associated with increased pain frequency or severity. Unemployment (β, 2.13; 95% CI, 0.99 to 3.23; P

IntroductionSickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample.MethodsWe performed a multiple methods study consisting of surveys and interviews in three comprehensive SCD centers from March to June 2018. Interviews were transcribed and coded, exploring themes around barriers to care. Survey questions on the specific themes identified in the interviews were analyzed using summary statistics.ResultsWe administered surveys to 208 individuals and conducted 44 in-depth interviews. Barriers to care were identified and classified according to ecological level (i.e., individual, family/interpersonal, provider, and socio-environmental/organizational level). Individual-level barriers included lack of knowledge in self-management and disease severity. Family/interpersonal level barriers were inadequate caregiver support and competing life demands. Provider level barriers were limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider's lack of appreciation of the patient's SCD knowledge. Socio-environmental/organizational level barriers included limited transportation, lack of insurance, administrative barriers, poor care coordination, and reduced access to care due to limited clinic availability, services provided or clinic refusal to provide SCD care.ConclusionParticipants reported several multilevel barriers to SCD care. Strategies tailored towards reducing these barriers are warranted. Our findings may also inform interventions aiming to locate and link unaffiliated individuals to care.

Individuals with sickle cell disease (SCD) experience neurocognitive decline, low medication adherence, increased unemployment, and difficulty with instrumental activities of daily living (IADL). The relationship between self-perceived cognitive difficulties and IADLs, including employment, school enrollment, independence, engagement in leisure activities, and medication adherence is unknown. We hypothesized that self-reported difficulties across neurocognitive areas would predict lower IADL skills. Adolescent and adult participants of the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) (n = 2436) completed patient-reported outcome (PRO) measures of attention, executive functioning, processing speed, learning, and comprehension. Cognitive symptoms were analyzed as predictors in multivariable modeling. Outcome variables included 1) an IADL composite that consisted of employment, participation in school, reliance on others, and leisure pursuits, and 2) hydroxyurea adherence. Participants reported cognitive difficulty across areas of attention (55%), executive functioning (51%), processing speed (57%), and reading comprehension (65%). Executive dysfunction (p

BackgroundIndividuals living with sickle cell disease often require aggressive treatment of pain associated with vaso-occlusive episodes in the emergency department. Frequently, pain relief is poor. The 2014 National Heart, Lung, and Blood Institute evidence-based guidelines recommended an individualized treatment and monitoring protocol to improve pain management of vaso-occlusive episodes.ObjectiveThis study will implement an electronic health record-embedded individualized pain plan with provider and patient access in the emergency departments of 8 US academic centers to improve pain treatment for adult patients with sickle cell disease. This study will assess the overall effects of electronic health record-embedded individualized pain plans on improving patient and provider outcomes associated with pain treatment in the emergency department setting and explore barriers and facilitators to the implementation process.MethodsA preimplementation and postimplementation study is being conducted by all 8 sites that are members of the National Heart, Lung, and Blood Institute-funded Sickle Cell Disease Implementation Consortium. Adults with sickle cell disease aged 18 to 45 years who had a visit to a participating emergency department for vaso-occlusive episodes within 90 days prior to enrollment will be eligible for inclusion. Patients will be enrolled in the clinic or remotely. The target analytical sample size of this study is 160 patient participants (20 per site) who have had an emergency department visit for vaso-occlusive episode treatment at participating emergency departments during the study period. Each site is expected to enroll approximately 40 participants to reach the analytical sample size. The electronic health record-embedded individualized pain plans will be written by the patient's sickle cell disease provider, and sites will work with the local informatics team to identify the best method to build the electronic health record-embedded individualized pain plan with patient and provider access. Each site will adopt required patient and provider implementation strategies and can choose to adopt optional strategies to improve the uptake and sustainability of the intervention. The study is informed by the Technology Acceptance Model 2 and the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Provider and patient baseline survey, follow-up survey within 96 hours of an emergency department vaso-occlusive episode visit, and selected qualitative interviews within 2 weeks of an emergency department visit will be performed to assess the primary outcome, patient-perceived quality of emergency department pain treatment, and additional implementation and intervention outcomes. Electronic health record data will be used to analyze individualized pain plan adherence and additional secondary outcomes, such as hospital admission and readmission rates.ResultsThe study is currently enrolling study participants. The active implementation period is 18 months.ConclusionsThis study proposes a structured, framework-informed approach to implement electronic health record-embedded individualized pain plans with both patient and provider access in routine emergency department practice. The results of the study will inform the implementation of electronic health record-embedded individualized pain plans at a larger scale outside of Sickle Cell Disease Implementation Consortium centers.Trial registrationClinicalTrials.gov NCT04584528; https://clinicaltrials.gov/ct2/show/NCT04584528.International registered report identifier (irrid)DERR1-10.2196/24818.

BackgroundAlthough cancer research has advanced at a rapid pace, a gap remains between what is known about how to improve cancer prevention and control (CPC) and what is implemented as best practices within health care systems and communities. The Cancer Prevention and Control Research Network (CPCRN), with more than 10 years of dissemination and implementation research experience, aims to accelerate the uptake and use of evidence-based CPC interventions.MethodsThe collective work of the CPCRN has facilitated the analysis and categorization of research and implementation efforts according to the Interactive Systems Framework for Dissemination and Implementation (ISF), providing a useful heuristic for bridging the gap between prevention research and practice. The ISF authors have called for examples of its application as input to help refine the model.ResultsWe provide examples of how the collaborative activities supported by the CPCRN, using community-engaged processes, accelerated the synthesis and translation of evidence, built both general and innovation-specific capacity, and worked with delivery systems to advance cancer control research and practice.ConclusionsThe work of the CPCRN has provided real-world examples of the application of the ISF and demonstrated that synthesizing and translating evidence can increase the potential that evidence-based CPC programs will be used and that capacity building for both the support system and the delivery system is crucial for the successful implementation and maintenance of evidence-based cancer control.ImpactAdoption and implementation of CPC can be enhanced by better understanding ISF systems and intervening to improve them.

Introduction: Use clinician perceptions to estimate the impact of a health information exchange (HIE) on emergency department (ED) care at four major hospital systems (HS) within a region. Use survey data provided by ED clinicians to estimate reduction in Medicare-allowable reimbursements (MARs) resulting from use of an HIE.Methods: We conducted the study during a one-year period beginning in February 2012. Study sites included eleven EDs operated by four major HS in the region of a mid-sized Southeastern city, including one academic ED, five community hospital EDs, four free-standing EDs and 1 ED/Chest Pain Center (CPC) all of which participated in an HIE. The study design was observational, prospective using a voluntary, anonymous, online survey. Eligible participants included attending emergency physicians, residents, and mid-level providers (PA & NP). Survey items asked clinicians whether information obtained from the HIE changed resource use while caring for patients at the study sites and used branching logic to ascertain specific types of services avoided including laboratory/microbiology, radiology, consultations, and hospital admissions. Additional items asked how use of the HIE affected quality of care and length of stay. The survey was automated using a survey construction tool (REDCap Survey Software © 2010 Vanderbilt University). We calculated avoided MARs by multiplying the numbers and types of services reported to have been avoided. Average cost of an admission from the ED was based on direct cost trends for ED admissions within the region.Results: During the 12-month study period we had 325,740 patient encounters and 7,525 logons to the HIE (utilization rate of 2.3%) by 231 ED clinicians practicing at the study sites. We collected 621 surveys representing 8.25% of logons of which 532 (85.7% of surveys) reported on patients who had information available in the HIE. Within this group the following services and MARs were reported to have been avoided [type of service: number of services; MARs]: Laboratory/Microbiology:187; $2,073, Radiology: 298; $475,840, Consultations: 61; $6,461, Hospital Admissions: 56; $551,282. Grand total of MARs avoided: $1,035,654; average $1,947 per patient who had information available in the HIE (Range: $1,491 - $2,395 between HS). Changes in management other than avoidance of a service were reported by 32.2% of participants. Participants stated that quality of care was improved for 89% of patients with information in the HIE. Eighty-two percent of participants reported that valuable time was saved with a mean time saved of 105 minutes.Conclusion: Observational data provided by ED clinicians practicing at eleven EDs in a mid-sized Southeastern city showed an average reduction in MARs of $1,947 per patient who had information available in an HIE. The majority of reduced MARs were due to avoided radiology studies and hospital admissions. Over 80% of participants reported that quality of care was improved and valuable time was saved. [West J Emerg Med. 2014;15(7):–0.]