Effect of the Communities that HEAL intervention on receipt of behavioral therapies for opioid use disorder: A cluster randomized wait-list controlled trial.

BACKGROUND: The U.S. opioid overdose crisis persists. Outpatient behavioral health services (BHS) are essential components of a comprehensive response to opioid use disorder and overdose fatalities. The Helping to End Addiction Long-Term® (HEALing) Communities Study developed the Communities That HEAL (CTH) intervention to reduce opioid overdose deaths in 67 communities in Kentucky, Ohio, New York, and Massachusetts through the implementation of evidence-based practices (EBPs), including BHS. This paper compares the rate of individuals receiving outpatient BHS in Wave 1 intervention communities (n = 34) to waitlisted Wave 2 communities (n = 33). METHODS: Medicaid data included individuals ≥18 years of age receiving any of five BHS categories: intensive outpatient, outpatient, case management, peer support, and case management or peer support. Negative binomial regression models estimated the rate of receiving each BHS for Wave 1 and Wave 2. Effect modification analyses evaluated changes in the effect of the CTH intervention between Wave 1 and Wave 2 by research site, rurality, age, sex, and race/ethnicity. RESULTS: No significant differences were detected between intervention and waitlisted communities in the rate of individuals receiving any of the five BHS categories. None of the interaction effects used to test the effect modification were significant. CONCLUSIONS: Several factors should be considered when interpreting results-no significant intervention effects were observed through Medicaid claims data, the best available data source but limited in terms of capturing individuals reached by the intervention. Also, the 12-month evaluation window may have been too brief to see improved outcomes considering the time required to stand-up BHS. TRIAL REGISTRATION: Clinical Trials.gov http://www. CLINICALTRIALS: gov: Identifier: NCT04111939.

Opioid Use Among Children and Adults With Sickle Cell Disease in North Carolina Medicaid Enrollees in the Era of Opioid Harm Reduction.

Adults and children with sickle cell disease (SCD) are predominantly African American, with pain-related health disparities. We examined opioid prescription fill patterns in adults and children with SCD and compared factors associated with fills in North Carolina Medicaid enrollees. Our retrospective cohort study included 955 enrollees diagnosed with SCD having at least one opioid fill. Associations were measured between two cohorts (12 and 24 mo of continuous enrollment) for the following characteristics: sex, age, enrollee residence, hydroxyurea adherence, comanagement, enrollment in Community Care North Carolina, prescription for short versus short and long-acting opioids, and emergency department reliance. The majority of individuals did not have an opioid claim over a 12 or 24-month period. Claims increased at ages 10 to 17, peaking at ages 18 to 30. The increased number of claims was associated with the following factors: increasing age, male, short versus long-acting opioids, and Medicaid enrollment for 24 versus 12 months. Community Care North Carolina enrollees in the 12-month cohort had higher opioid days of supply per month; the inverse was true of the 24-month cohort.

Performance of the 2016 ACR-EULAR myositis response criteria in juvenile dermatomyositis therapeutic trials and consensus profiles.

OBJECTIVES: The 2016 ACR-EULAR Response Criteria for JDM was developed as a composite measure with differential weights of six core set measures (CSMs) to calculate a Total Improvement Score (TIS). We assessed the contribution of each CSM, representation of muscle-related and patient-reported CSMs towards improvement, and frequency of CSM worsening across myositis response criteria (MRC) categories in validation of MRC. METHODS: Data from JDM patients in the Rituximab in Myositis trial (n = 48), PRINTO JDM trial (n = 139), and consensus patient profiles (n = 273) were included. Observed vs expected CSM contributions were compared using Sign test. Characteristics of MRC categories were compared by Wilcoxon tests with Bonferroni adjustment. Spearman correlation of changes in TIS and individual CSMs were examined. Agreement between physician-assessed change and MRC categories was evaluated by weighted Cohen's kappa. RESULTS: Of 457 JDM patients with IMACS CSMs and 380 with PRINTO CSMs, 9-13% had minimal, 19-23% had moderate and 41-50% had major improvement. The number of improved and absolute percentage change of CSMs increased by MRC improvement level. Patients with minimal improvement by MRC had a median of 0-1 CSM worsened, and those with moderate/major improvement had a median of zero worsening CSMs. Of patients improved by MRC, 94-95% had improvement in muscle strength and 93-95% had improvement in ≥1 patient-reported CSM. IMACS and PRINTO CSMs performed similarly. Physician-rated change and MRC improvement categories had moderate-to-substantial agreement (Kappa 0.5-0.7). CONCLUSION: The ACR-EULAR MRC perform consistently across multiple studies, supporting its further use as an efficacy end point in JDM trials.

Performance of the 2016 ACR-EULAR Myositis Response Criteria in adult dermatomyositis/polymyositis therapeutic trials and consensus profiles.

OBJECTIVE: The ACR-EULAR Myositis Response Criteria (MRC) were developed as a composite measure using absolute percentage change in six core set measures (CSMs). We aimed to further validate the MRC by assessing the contribution of each CSM, frequency of strength vs extramuscular activity improvement, representation of patient-reported outcome measures (PROM), and frequency of CSM worsening. METHODS: Data from adult dermatomyositis/polymyositis patients in the rituximab (n = 147), etanercept (n = 14), and abatacept (n = 19) trials, and consensus patient profiles (n = 232) were evaluated. The Total Improvement Score (TIS), number of improving vs worsening CSMs, frequency of improvement with and without muscle-related CSMs, and contribution of PROM were evaluated by MRC category. Regression analysis was performed to assess contribution of each CSM to the MRC. RESULTS: Of 412 adults with dermatomyositis/polymyositis, there were 37%, 24%, 25%, and 14% with no, minimal, moderate, and major MRC improvement, respectively. The number of improving CSMs and absolute percentage change in all CSMs increased by improvement category. In minimal-moderate improvement, only physician-reported disease activity contributed significantly more than expected by MRC. Of patients with at least minimal improvement, 95% had improvement in muscle-related measures and a majority (84%) had improvement in PROM. Patients with minimal improvement had worsening in a median of 1 CSM, and most patients with moderate-major improvement had no worsening CSMs. Physician assessment of change generally agreed with MRC improvement categories. CONCLUSION: The ACR-EULAR MRC performs consistently across multiple studies, further supporting its use as an efficacy end point in future myositis therapeutic trials.

Pessoas com Deficiência e COVID-19 no estado do Espírito Santo, Brasil: entre a invisibilidade e a falta de Políticas Públicas / People with Disabilities and COVID-19 in the state of Espírito Santo, Brazil: between invisibility and lack of Public Policies

Resumo O objetivo deste artigo é analisar o perfil das pessoas com deficiência dentre os casos notificados pelo painel COVID-19 do Espírito Santo e possíveis associações com o resultado positivo do teste COVID-19. Estudo Transversal descritivo entre as pessoas com deficiência com testes positivos e negativos para o diagnóstico de COVID-19. Foram realizadas associações das variáveis epidemiológicas e clínicas, utilizando o teste qui-quadrado e modelos de regressão logística para se estimar o odds ratio. A letalidade por COVID-19 foi de 4,9% (175 casos) no grupo das pessoas com deficiência, e 3% (3.016) no grupo sem deficiência. Pessoas com deficiência do sexo masculino (OR=1,34; IC95% 1,22-1,47), raça/cor preta (OR=1,55; IC95% 1,09-2,20), e as que ficaram internadas (OR=2,27; IC95% 1,71-3,02) apresentaram associação com testes positivos para COVID-19. A pandemia enfatiza a necessidade de criar mecanismos legais de cuidados específicos e políticas públicas focalizadas para essa população.

Abstract This article aims to analyze the profile of people with disabilities among the cases notified by the COVID-19 panel of Espírito Santo and the possible associations with the positive result of the COVID-19 test. Descriptive cross-sectional study among people with disabilities with positive and negative tests for the diagnosis of COVID-19. Associations of epidemiological and clinical variables were performed using the chi-square test and logistic regression models to estimate the odds ratio. Lethality rate of COVID-19 was 4.9% (175 cases) in the group of people with disabilities, and 3% (3,016) in the group without disabilities. People with disabilities, male (OR=1.34; 95%CI 1.22-1.47), race/black color (OR=1.55; 95%CI 1.09-2.20), and those who were hospitalized (OR=2.27; 95%CI 1.71-3.02) were associated with positive tests for COVID-19. The pandemic emphasizes the need to create specific legal care mechanisms and targeted public policies for this population.

People with Disabilities and COVID-19 in the state of Espírito Santo, Brazil: between invisibility and lack of Public Policies. / Pessoas com Deficiência e COVID-19 no estado do Espírito Santo, Brasil: entre a invisibilidade e a falta de Políticas Públicas.

This article aims to analyze the profile of people with disabilities among the cases notified by the COVID-19 panel of Espírito Santo and the possible associations with the positive result of the COVID-19 test. Descriptive cross-sectional study among people with disabilities with positive and negative tests for the diagnosis of COVID-19. Associations of epidemiological and clinical variables were performed using the chi-square test and logistic regression models to estimate the odds ratio. Lethality rate of COVID-19 was 4.9% (175 cases) in the group of people with disabilities, and 3% (3,016) in the group without disabilities. People with disabilities, male (OR=1.34; 95%CI 1.22-1.47), race/black color (OR=1.55; 95%CI 1.09-2.20), and those who were hospitalized (OR=2.27; 95%CI 1.71-3.02) were associated with positive tests for COVID-19. The pandemic emphasizes the need to create specific legal care mechanisms and targeted public policies for this population.

O objetivo deste artigo é analisar o perfil das pessoas com deficiência dentre os casos notificados pelo painel COVID-19 do Espírito Santo e possíveis associações com o resultado positivo do teste COVID-19. Estudo Transversal descritivo entre as pessoas com deficiência com testes positivos e negativos para o diagnóstico de COVID-19. Foram realizadas associações das variáveis epidemiológicas e clínicas, utilizando o teste qui-quadrado e modelos de regressão logística para se estimar o odds ratio. A letalidade por COVID-19 foi de 4,9% (175 casos) no grupo das pessoas com deficiência, e 3% (3.016) no grupo sem deficiência. Pessoas com deficiência do sexo masculino (OR=1,34; IC95% 1,22-1,47), raça/cor preta (OR=1,55; IC95% 1,09-2,20), e as que ficaram internadas (OR=2,27; IC95% 1,71-3,02) apresentaram associação com testes positivos para COVID-19. A pandemia enfatiza a necessidade de criar mecanismos legais de cuidados específicos e políticas públicas focalizadas para essa população.

The National Practitioner Database Malpractice Study of Severity of Alleged Malpractice Injuries Trends 2008-2018.

This research examined trends and severity of alleged injury in malpractice over a 10-year period. An understanding of the severity of patient outcomes is important to gauge improvements in care delivery. Analysis of the National Practitioner Database (NPDB) investigated malpractice payments from 2008 to 2018 by physicians, advanced nurse practitioners, and registered nurses and assessed the relationship of years of practice on the severity of alleged malpractice injury. Malpractice payments over the study period, primarily represented payments for significant permanent or major permanent injuries (25.97%) or death (32.74%). Claims overall have shown a decline, including claims by the severity of malpractice injury, for most outcomes. The clinicians represented in the NPDB with >15 years of practice have greater odds for severity of malpractice injuries classified as minor permanent injury and significant permanent injury than those clinicians represented in the NPDB with fewer years of practice. Top allegation categorizations for malpractice payment were diagnostics, treatment, and surgery related for 4 of the severities of alleged injury.

Changes in health and health care utilization following eviction from public housing.

OBJECTIVES: This study sought to (1) determine the number of persons evicted from the Durham Housing Authority (DHA) over a 5-year period, (2) explore changes in the number of persons with various medical diagnoses and health care utilization patterns before and after eviction, and (3) examine how many persons evicted from DHA became literally homeless. DESIGN: This was a pre/post cross-sectional quantitative study. SAMPLE: Heads of households evicted from DHA properties from January 1, 2013 through December 31, 2017 were included in the study. MEASUREMENTS: We matched people evicted by the DHA in a university health system electronic health record system to determine changes in diagnoses and health care utilization before and after eviction. We also matched the cohort in the homeless management information system to determine how many persons evicted became literally homeless. RESULTS: Findings indicate statistically significant increases in persons with medical diagnoses in five of ten categories, total hospital admissions, and emergency department visits after eviction. Of the 152 people included in the study, 34 (22%) became literally homeless. CONCLUSIONS: Health and health care utilization patterns were different before and after eviction. Implications for clinicians are explored.

Fast-Tracking Patients in an Academic Hospital to Increase Efficiency and Decrease Discharge Delays: A Process Improvement Plan.

PURPOSE: The purpose of this quality improvement project was to determine if implementing a Phase II postanesthesia care unit (PACU II) to fast-track patients following surgery in an academic hospital would decrease OR hold times and increase patient flow efficiency. DESIGN: An observational pre-post design was used to compare PACU bypass rates and recovery times for ambulatory surgery (AS) patients before and after implementation of a patient fast-tracking program. METHODS: A PACU II was instituted and a fast-tracking program using the White Fast-Track Scoring tool was adopted. Nursing staff as well as anesthesia providers were educated to assess patients using the tool as well as the appropriate patient population to be transferred to the new PACU II. FINDINGS: Following implementation of the new unit and the fast-tracking program, a PACU bypass rate of 30% was achieved and there was a significant decrease in PACU length of stay for AS patients. CONCLUSIONS: The results suggest that fast-tracking is a suitable intervention to decrease inefficiencies in an academic setting despite higher acuity patient populations.

A Needs Assessment of Persons With Sickle Cell Disease in a Major Medical Center in North Carolina.

BACKGROUND Sickle cell disease (SCD) is a complex disease associated with many complications and a shortened lifespan. In 2016, the National Heart, Lung and Blood Institute funded 8 centers in the United States to form the Sickle Cell Disease Implementation Consortium, with the goal of improving SCD care. The aim of our study was to describe SCD self-efficacy, pain interference, and barriers to care from the perspective of persons with SCD in the North Carolina center.METHODS Persons with SCD, aged 15 and older were recruited from a large SCD center in North Carolina. Surveys, focus groups, and interviews were completed.RESULTS Fifty-one people completed a survey, and 14 people completed an interview or focus group. Barriers identified in the survey included self-care barriers, misconceptions related to hydroxyurea (an oral medication that reduces rates of pain crisis), limited provider knowledge, and stigma. Concerning self-efficacy, participants reported that they were able to manage their pain symptoms most of the time. Pain interfered most with the ability to participate in social and day-to-day activities.Common themes from the focus groups and interviews included misconceptions about hydroxyurea, pain, provider knowledge, stigma, co-management, transportation, and insurance. Recommendations to improve care included the use of case managers, utilization of treatment guidelines, individualized pain protocols, and effective co-management by providers.LIMITATIONS Participants were recruited from 1 SCD center and may not be representative of the entire SCD population in North Carolina.CONCLUSIONS Participants described many perceived barriers to care, and their responses suggest a need for improvements in patient hydroxyurea education, provider knowledge, and care coordination.

Molecular Characterization of Xyloglucanase cel74a from Trichoderma reesei.

BACKGROUND: The filamentous fungus Trichoderma reesei is used on an industrial scale to produce enzymes of biotechnological interest. This fungus has a complex cellulolytic system involved in the degradation of lignocellulosic biomass. However, several aspects related to the regulation of the expression of holocellulolytic genes and the production of cellulases by this fungus are still understood. METHODS: Here, we constructed a null mutant strain for the xyloglucanase cel74a gene and performed the characterization of the Δcel74a strain to evaluate the genetic regulation of the holocellulases during sugarcane bagasse (SCB) cultivation. RESULTS: Our results demonstrate that the deletion of xyloglucanase cel74a may impact the regulation of holocellulase expression during SCB cultivation. The expression of cellulases cel7a, cel7b, and cel6a was reduced in Δcel74a strain, while the hemicellulases xyn1 and xyn2 were increased in the presence of SCB. The cel74a mutation also affected the xyloglucan hydrolysis patterns. In addition, CEL74A activity was modulated in the presence of calcium, suggesting that this ion may be required for efficient degradation of xyloglucan. CONCLUSIONS: CEL74A affects the regulation of holocellulolytic genes and the efficient degradation of SCB in T. reesei. This data makes a significant contribution to our understanding of the carbon utilization of fungal strains as a whole.

Eviction as a Disruptive Factor in Health Care Utilization: Impact on Hospital Readmissions and No-show Rates.

BACKGROUND: Residential eviction is a component of housing instability that negatively affects physical and mental health, but the effect of eviction on health care utilization, specifically hospital readmissions and outpatient no-show rates, is not known. METHODS: We conducted a retrospective review of health care utilization of individuals evicted from public housing between January 2013 and December 2017, investigating hospital readmissions and no-show rates one year before and after eviction. RESULTS: 131 individuals who had been evicted had one year of data pre-and post-eviction. The majority were African American (97.7%) and female (80.9%). There was no significant change in 30-, 60-, and 90-day hospital readmissions (p>.05). No-show rate decreased from 27.57 per person per year to 20.13 (p=.05). CONCLUSIONS: For our study population, health care utilization was not disrupted. The decreased no-show rate represents an opportunity for health systems to engage with patients on social factors affecting their health post-eviction.

Longitudinal Investigation of Pubertal Milestones and Hormones as a Function of Body Fat in Girls.

CONTEXT: Epidemiologic studies have demonstrated that overweight/obese girls (OW/OB) undergo thelarche and menarche earlier than normal weight girls (NW). There have been no longitudinal studies to specifically investigate how body weight/fat affects both clinical and biochemical pubertal markers in girls. OBJECTIVE: To investigate the effect of total body fat on reproductive hormones and on the maturation of estrogen-sensitive tissues during puberty in girls. METHODS: Ninety girls (36 OW/OB, 54 NW), aged 8.2 to 14.7 years, completed 2.8 ±â€…1.7 study visits over 4 years. Visits included dual-energy x-ray absorptiometry to calculate total body fat (TBF), Tanner staging, breast ultrasound for morphological staging (BMORPH; A-E), pelvic ultrasound, hormone tests, and assessment of menarchal status. The effect of TBF on pubertal markers was determined using a mixed, multistate, or Cox proportional hazards model, controlling for baseline BMORPH. RESULTS: NW were older than OW/OB (11.3 vs 10.2 years, P < .01) at baseline and had more advanced BMORPH (P < .01). Luteinizing hormone, estradiol, and ovarian and uterine volumes increased with time with no effect of TBF. There was a time × TBF interaction for follicle-stimulating hormone, inhibin B, estrone, total and free testosterone, and androstenedione: Levels were initially similar, but after 1 year, levels increased in girls with higher TBF, plateaued in girls with midrange TBF, and decreased in girls with lower TBF. Girls with higher TBF progressed through BMORPH stage D more slowly but achieved menarche earlier than girls with lower TBF. CONCLUSION: In late puberty, girls with higher TBF demonstrate differences in standard hormonal and clinical markers of puberty. Investigation of the underlying causes and clinical consequences of these differences in girls with higher TBF deserves further study.

Patient Perspectives of Sickle Cell Management in the Emergency Department.

Sickle cell disease (SCD) is a common genetic blood disorder predominantly affecting African Americans in the United States. The objective of this study was to use a multimethods approach to describe how patients with SCD in North Carolina perceive the care they receive in emergency departments (EDs). Fourteen participants completed an interview (n = 10) or 2 focus groups (n = 2 per focus group) and 51 completed surveys. Sixty percent of participants with pain attack "very much" or "quite a bit" avoided going to the ED for care because of prior bad experiences and 50% of participants reported waiting 120 minutes or more in the ED for treatment of their sickle cell pain. Participants reported that stigma associated with provider perception of drug-seeking behavior is a persistent problem in the ED. Participant recommendations warrant further investigation to address persistent SCD quality-of-care concerns in the ED.

CRZ1 regulator and calcium cooperatively modulate holocellulases gene expression in Trichoderma reesei QM6a.

Trichoderma reesei is the main filamentous fungus used in industry to produce cellulases. Here we investigated the role of CRZ1 and Ca2+signaling in the fungus T. reesei QM6a concerning holocellulases production. For this, we first searched for potential CRZ1 binding sites in promoter regions of key genes coding holocellulases, as well as transcriptional regulators and sugar and calcium transporters. Using a nearly constructed T. reeseiAcrz1 strain, we demonstrated that most of the genes expected to be regulated by CRZ1 were affected in the mutant strain induced with sugarcane bagasse (SCB) and cellulose. In particular, our data demonstrate that Ca2+ acts synergistically with CRZ1 to modulate gene expression, but also exerts CRZ1-independent regulatory role in gene expression in T. reesei, highlighting the role of the major regulator Ca2+ on the signaling for holocellulases transcriptional control in the most part of cellulases genes here investigated. This work presents new evidence on the regulatory role of CRZ1 and Ca2+ sensing in the regulation of cellulolytic enzymes in T. reesei, evidencing significant and previously unknown function of this Ca2+sensing system in the control key transcriptional regulators (XYR1 and CRE1) and on the expression of genes related to sugar and Ca2+ transport.

Surface Contamination With Antineoplastic Drugs on Two Inpatient Oncology Units.

OBJECTIVES: To measure surface contamination with antineoplastic drugs on inpatient oncology units and to characterize nursing staff personal protective equipment (PPE) use and factors that predict this use. SAMPLE & SETTING: A descriptive pilot study of two inpatient oncology units at Duke University Hospital in Durham, North Carolina, administering etoposide and cyclophosphamide. METHODS & VARIABLES: Surfaces in four patient rooms and select shared areas were swabbed with methanol, acetonitrile, and water. Samples were analyzed by liquid chromatography tandem mass spectrometry. Nursing staff (N = 27) answered questions about their demographics, PPE use, and factors that influence PPE use via online survey. RESULTS: Contamination with cyclophosphamide and etoposide was detectable and quantifiable in 61% and 31% of surfaces tested, respectively. Nursing staff reported suboptimal use of PPE when administering, disposing, and handling excreta of patients. Workplace safety climate was predictive of PPE use. IMPLICATIONS FOR NURSING: The potential for contamination with antineoplastic drugs in inpatient oncology units presents exposure risks for healthcare workers, patients, family members, and visitors. Future research and interventions to limit exposure and increase routine surface sampling should focus on those areas of greatest contamination, including toilet seats, a prominent finding from the current study.

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use.

BACKGROUND: Sickle-cell disease (SCD) causes significant morbidity, premature mortality, and high disease burden, resulting in frequent health care use. Comanagement may improve utilization and patient adherence with treatments such as Hydroxyurea. The purpose of this study was to describe acute-care utilization in Medicaid-enrolled patients with SCD, patient factors associated with comanagement, and adherence to Hydroxyurea. METHODS: Data from 2790 patients diagnosed with SCD, age 1 to 65+ years, enrolled at least 1 month in North Carolina Medicaid between March 2016 and February 2017, were analyzed. Outpatient visits were categorized as primary care, hematologist, and nonhematologist specialist. Nurse practitioners or physician assistants with unidentified specialty type or family practice were categorized separately. Comanagement was defined as a minimum of 1 primary care and 1 hematologist visit/patient during the study period. RESULTS: There were notable age-related differences in utilization of health care services. Only 34.82% of the sample was comanaged. Comanagement was higher in the 1-to-9-year-old (44.88%) and 10-to-17-year-old groups (39.22%) versus the 31-to-45-year-old (30.26%) and 65+-year-old (18.75%) age groups. Age had the greatest influence (AUC = 0.599) on whether or not a patient was comanaged. Only a third of the sample (32.24%) had at least 1 Hydroxyurea (HU) prescription. Age was the most predictive factor of good HUadherence (AUC = 0.6503). Prediction by comanagement was minimal with an AUC = 0.5615. CONCLUSION: Comanagement was a factor in predicting HUadherence, but further studies are needed to identify the frequency and components of comanagement needed to increase adherence and reduce acute care utilization.

Nursing Assistants' Use of Personal Protective Equipment Regarding Contact With Excreta Contaminated With Antineoplastic Drugs.

PURPOSE: To examine the feasibility of observing and interviewing nursing assistants about handling of antineoplastic drugs contaminated with excreta, acceptability of a measure of personal protective equipment (PPE) use with nursing assistants, and predictors of PPE use. PARTICIPANTS & SETTING: 27 nursing assistants in an inpatient hematology-oncology unit at an academic medical center in the southeastern United States. METHODOLOGIC APPROACH: This was an exploratory, multimethod study using observation, verbally administered questionnaires, and interviews. Research variables included recruitment rates, acceptability of observation, and understandability of a safe-handling instrument. FINDINGS: Observed use of double gloves, chemotherapy gowns, and face shields was low; use of plastic-backed pads when flushing excreta was high. IMPLICATIONS FOR NURSING: Nursing assistants are willing to participate in research. Standardized training and education about PPE use are needed.

A pilot test of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Jenerette Self-Care Assessment (J-SAT) Tools in adults with sickle cell disease.

BACKGROUND: The purpose of this study was to pilot test two sickle cell-specific instruments, the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and Jenerette Self-Care Assessment Tool (J-SAT), to determine recruitment rate, percent completion of the instrument battery, and patient perceptions of health-related quality of life outcomes and self-care activities in a convenience sample of adults with sickle cell disease (SCD). METHODS: A cross-sectional pilot study was conducted. Participants were recruited from a sickle cell clinic and conference on SCD. Subjects completed self-administered assessments including demographic and clinical characteristics, ASCQ-Me, and the J-SAT. RESULTS: Twenty of 22 participants completed the instruments (2 refusals) and most instruments had 100% completion rates. Participants reported average to healthier status on ASCQ-Me measures than a normative referent population of 556 individuals with SCD. Participants also reported high disease severity and high J-SAT scores (mean = 30.2), indicating frequent participation in self-care activities. CONCLUSIONS: There was good participation, low refusal rates, and subjects completed the instruments and items without difficulty. Based on this work, a multi-method, multi-site study in Jamaica and the USA will be conducted to understand the relationships between health-related quality of life, stigma, and self-management in adults with SCD.