IMPORTANCE Sickle cell disease (SCD) is the most common inherited red blood cell disorder in the United States, and previous studies have shown that individuals with SCD are affected by multiple health disparities, including stigmatization, inequities in funding, and worse health outcomes, which may preclude their ability to access quality health care. This needs assessment was performed as part of the Sickle Cell Disease Implementation Consortium (SCDIC) to assess barriers to care that may be faced by individuals with SCD. OBJECTIVE To assess the SCD-related medical care experience of adolescents and adults with SCD. DESIGN, SETTING, AND PARTICIPANTS This one-time survey study evaluated pain interference, quality of health care, and self-efficacy of 440 adults and adolescents (aged 15 to 50 years) with SCD of all genotypes and assessed how these variables were associated with their perceptions of outpatient and emergency department (ED) care. The surveys were administered once during office visits by trained study coordinators at 7 of 8 SCDIC sites in 2018. RESULTS The SCDIC sites did not report the number of individuals approached to participate in this study; thus, a response rate could not be calculated. In addition, respondents were not required to answer every question in the survey; thus, the response rate per question differed for each variable. Of 440 individuals with SCD, participants were primarily female (245 [55.7%]) and African American (428 [97.3%]) individuals, with a mean (SD) age of 27.8 (8.6) years. The majority of participants (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S β 0-thalassemia. Most respondents (361 of 437 [82.6%]) reported access to nonacute (usual) SCD care, and the majority of respondents (382 of 413 [92.1%]) noted satisfaction with their usual care physician. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Respondents were less pleased with their ED care than their usual care clinician, with approximately half (146 of 287 [50.9%]) being satisfied with or perceiving having adequate quality care in the ED. Participants also noted that when they experienced severe pain or clinician lack of empathy, this was associated with a negative quality of care. Age group was associated with ED satisfaction, with younger patients (<19 vs 19-30 and 31-50 years) reporting better ED experiences. CONCLUSIONS AND RELEVANCE These results suggested that a negative perception of care may be a barrier for patients seeking care. These findings underscore the necessity of implementation studies to improve access to quality care for this population, especially in the acute care setting.
Introduction: The American College of Surgeons Oncology Group Z0030 found no survival difference between patients with early stage NSCLC who had mediastinal nodal dissection or systematic sampling. However, a metaanalysis of 1980 patients in five randomized controlled trials from 1989 to 2007 associated better survival with nodal dissection. We tested the survival impact of the extent of nodal dissection in curative-intent resections for early stage NSCLC in a population-based observational cohort.Methods: Resections for clinical T1 or T2, N0 or nonhilar N1, M0 NSCLC in four contiguous United States Hospital Referral Regions from 2009 to 2019 were categorized into mediastinal nodal dissection, systematic sampling, and "neither" on the basis of of the evaluation of lymph node stations. We compared demographic and clinical characteristics, perioperative complication rates, and survival after assessing statistical interactions and confounding.Results: Of the 1942 eligible patients, 18% had nodal dissection, 6% had systematic sampling, and 75% had an intraoperative nodal evaluation that met neither standard. In teaching hospitals, nodal dissection was associated with a lower hazard of death than "neither" resections (0.57 [95% confidence interval: 0.41-0.79]) but not systematic sampling (0.74 [0.40-1.37]) after adjusting for multiple comparisons. There was no significant difference in hazard ratios at nonteaching institutions (p > 0.3 for all comparisons). Perioperative complication rates were not significantly worse after mediastinal nodal dissection or systematic sampling, compared with "neither," (p > 0.1 for all comparisons). Conclusions:In teaching institutions, mediastinal nodal dissection was associated with superior survival over lesscomprehensive pathologic nodal staging. There was no survival difference between teaching and nonteaching institutions, a finding that warrants further investigation.
Introduction We compared NSCLC treatment and survival within and outside a multidisciplinary model of care from a large community health care system. Methods We implemented a rigorously benchmarked “enhanced” Multidisciplinary Thoracic Oncology Conference (eMTOC) and used Tumor Registry data (2011–2017) to evaluate guideline-concordant care. Because eMTOC was located in metropolitan Memphis, we separated non-MTOC patient by metropolitan and regional location. We categorized National Comprehensive Cancer Network guideline-concordant treatment as “preferred,” or “appropriate” (allowable under certain circumstances). We compared demographic and clinical characteristics across cohorts using chi-square tests and survival using Cox regression, adjusted for multiple testing. We also performed propensity-matched and adjusted survival analyses. Results Of 6259 patients, 14% were in eMTOC, 55% metropolitan non-MTOC, and 31% regional non-MTOC cohorts. eMTOC had the highest rates of African Americans (34% versus 28% versus 22%), stages I to IIIB (63 versus 40 versus 50), urban residents (81 versus 78 versus 20), stage-preferred treatment (66 versus 57 versus 48), guideline-concordant treatment (78 versus 70 versus 63), and lowest percentage of nontreatment (6 versus 21 versus 28); all p values were less than 0.001. Compared with eMTOC, hazard for death was higher in metropolitan (1.5, 95% confidence interval: 1.4–1.7) and regional (1.7, 1.5–1.9) non-MTOC; hazards were higher in regional non-MTOC versus metropolitan (1.1, 1.0–1.2); all p values were less than 0.05 after adjustment. Results were generally similar after propensity analysis with and without adjusting for guideline-concordant treatment. Conclusions Multidisciplinary NSCLC care planning was associated with significantly higher rates of guideline-concordant care and survival, providing evidence for rigorous implementation of this model of care.
Introduction: Suboptimal pathologic nodal staging prevails after curative-intent resection of lung cancer. We evaluated the impact of a lymph node specimen collection kit on lung cancer surgery outcomes in a prospective, populationbased, staggered implementation study. Methods: From January 1, 2014, to August 28, 2018, we implemented the kit in three homogeneous institutional cohorts involving 11 eligible hospitals from four contiguous hospital referral regions. Our primary outcome was pathologic nodal staging quality, defined by the following evidence-based measures: the number of lymph nodes or stations examined, proportions with poor-quality markers such as nonexamination of lymph nodes, and aggregate quality benchmarks including the National Comprehensive Cancer Network criteria. Additional outcomes included perioperative complications, health care utilization, and overall survival. Results: Of 1492 participants, 56% had resection with the kit and 44% without. Pathologic nodal staging quality was significantly higher in the kit cases: 0.2% of kit cases versus 9.8% of nonkit cases had no lymph nodes examined; 3.2% versus 25.3% had no mediastinal lymph nodes; 75% versus 26% attained the National Comprehensive Cancer Network criteria (p < 0.0001 for all comparisons). Kit cases revealed no difference in perioperative complications or health care *Corresponding author. Disclosure: Dr. Osarogiagbon owns patents for the lymph node specimen collection kit; owns stocks in Eli Lilly, Gilead Sciences, and Pfizer; has worked as a paid research consultant for the American Cancer Society,
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