Impact of community health workers on quality of life in adolescents and young adults with sickle cell disease: The SHIP-HU study.

Health-related quality of life (HRQoL) is an important outcome for patients with sickle cell disease (SCD). It is often poor compared with other chronic medical conditions or measured as a multidomain disease-specific construct. We previously reported outcomes in the Start Healing in Patients with Hydroxyurea (SHIP-HU) randomized controlled trial in adolescents and adults with SCD at six clinical sites. Besides the primary outcomes, we also measured HRQoL as a secondary outcome. Patients in the intervention arm were each assigned community health workers (CHWs) who provided case management services. CHW services were independent of medical management, and medical managers were blinded to the study arm. Patients in the control arm received only standard of care. We hypothesized that having a CHW would improve HRQoL in patients enrolled in SHIP-HU. We did not find significant differences between domains of HRQoL in the two study arms. Possible explanations include selection bias of enrolled versus unenrolled patients, selection bias of sites, medical providers and medical management, enforced blinding, and a lack of cooperation between medical managers and CHWs. The importance of CHWs and HRQoL is nonetheless recognized based on the literature. Future interventions on HRQoL in SCD should consider alternative study designs and multimodal interventions.

Satisfaction and access to care for adults and adolescents with sickle cell disease: ASCQ-Me quality of care and the SHIP-HU study.

A lack of adult sickle cell providers has long been blamed for poor satisfaction and access to specialty care for adults with sickle cell disease (SCD). We were interested in comparing how adolescent and adult patients already in established SCD centers perceived access and quality of care. Hydroxyurea-eligible patients aged 15 years and older were enrolled in the Start Healing in Patients with Hydroxyurea trial, which required them to be affiliated with a SCD specialist. Patients were seen in one of three adult-oriented specialty clinic sites or one of three pediatric-oriented sites. At baseline, patients completed the Adult Sickle Cell Quality of Life Measurement Information System measure as part of a survey battery. Patients treated at adult clinic sites reported being less able to get timely ambulatory appointments (p = .004). They reported emergency department (ED) wait times of >1 h far more often (47.7 vs. 19.3%, p = .0048). They reported less overall satisfaction with care (7.47 vs. 8.77, p < .0001), and less satisfaction with care in the ED (2.88 vs. 3.4, p = .0068. Ambulatory satisfaction was no different between pediatric site versus adult site patients. Poorer systems of care appeared to underlie reported differences, rather than differences in biopsychosocial determinants. Even among specialty-care-affiliated SCD patients, those seen in adult clinics reported worse access to care and lower satisfaction with care than patients seen in pediatric clinics. In addition to increasing the number of adult SCD providers and better preparing pediatric SCD patients to transfer to adult programs, SCD clinical caregivers must also improve aspects of adult care quality to meet reasonable patient expectations of timeliness and interpersonal aspects of care quality.

Development and validation of the sickle cell stress scale-adult.

Disease-specific stress can partly explain Sickle Cell Disease (SCD) healthcare utilization. We developed and validated two measures of adult SCD-specific stress for research and clinical care. A large cohort of adults with SCD completed both the 3-item Likert-scale adapted from a previous disease stress measure and a 10-item Likert-scale questionnaire drafted specifically to measure SCD stress. They concurrently completed a psychosocial and health-related quality of life scale battery, then subsequently daily pain diaries. Diaires measured: daily intensity, distress and interference of pain; self-defined vaso-occlusive crises (VOC), opioid use, and types of healthcare utilization for up to 24 weeks. Analyses tested Cronbach's alpha, correlation of the three-item and 10-item stress scales with the concurrent battery, with percentages of pain days, VOC days, opioid use days, and healthcare utilization days, and correlation of baseline stress and 6-month stress for the 10-item scale. Cronbach's alpha was high for both the 3-item (0.73) and 10-item (0.83) SCD stress scales, test-retest correlation of 0.55, expected correlation with the concurrent battery, and correlation with diary-measured healthcare utilization over 6 months. The correlations with the 3-item scale were stronger, but only statistically significant for depression-anxiety. The correlation between the two stress scales was 0.59. Both the 3-item and the 10-item stress scales exhibited good face, construct, concurrent, and predictive validity as well as moderate test-retest reliability. Further scale validation should determine population norms and response to interventions.

A randomised controlled provider-blinded trial of community health workers in sickle cell anaemia: effects on haematologic variables and hydroxyurea adherence.

Hydroxyurea (hydroxycarbamide) (HU) for sickle cell anaemia (SCA) is underutilised. Case management is an evidence-based health management strategy and in this regard patient navigators (PNs) may provide case management for SCA. We hypothesised that HU-eligible patients exposed to PNs would have improved indicators of starting HU and HU adherence. We randomised 224 HU-eligible SCA adults into the Start Healing in Patients with Hydroxyurea (SHIP-HU) Trial. All patients received care from trained physicians using standardised HU prescribing protocols. Patients in the Experimental arm received case management and education from PNs through multiple contacts. All other patients were regarded as the Control arm and received specialty care alone. Study physicians were blinded to the study arms and did not interact with PNs. At baseline, 6 and 12 months we assessed and compared laboratory parameters and HU adherence indicators. Experimental patients had higher 6-month mean fetal haemoglobin (HbF) levels than controls. But at 12 months, mean HbF was similar, as were white blood cell count, absolute neutrophil count, total haemoglobin, platelet count and mean corpuscular volume. At 12 months there were fewer experimental patients missing HU doses than controls (mean 1·8 vs. 4·5, P = 0·0098), and more recent HU prescriptions filled than for controls (mean 53·8 vs. 92 days, median 27·5 vs. 62 days, P = 0·0082). Mean HU doses were largely similar. We detected behavioural improvements in HU adherence but no haematological improvements by adding PNs to specialty care.

The aspartate aminotransferase/platelet count ratio index as a marker of dengue virus infection: Course of illness.

BACKGROUND: The usefulness of laboratory tests in the decision-making process with regard to early identification of dengue virus infection has not been widely reported, particularly the aspartate aminotransferase (AST)/platelet count ratio index during a patient's days of illness. The aim of this study was to examine the pattern of the ratio index over the course of illness and identify whether it is a marker of dengue virus infection in dengue patients, as well as to assess the role of other laboratory tests. METHODS: A chart review of 205 dengue patients was analyzed using available records of 845 laboratory results within different time intervals or exam dates during the course of illness. We used repeated measures mixed binary logistic regression analyses to model the dengue virus infection, defined as giving at least one positive antibody test (yes/no). RESULTS: The high risk of dengue virus infection in dengue patients was found in the male gender (adjusted OR=4.316, 95% CI: 1.285-14.498, P=0.018), in patients with a high AST/platelet count ratio index (adjusted OR=1.438, 95% CI: 1.057-1.957, P=0.021), in patients with a low MCV level (adjusted OR=0.815, 95% CI: 0.679-0.978, P=0.028), and in patients with a low ALT level (adjusted OR=0.996, 95% CI: 0.993-0.999, P=0.010). CONCLUSION: Laboratory markers, in particular the AST/platelet count ratio index, can be useful for clinicians to strengthen the decision-making process in primary care settings. Furthermore, our model revealed that low MCV and low ALT are predictors of the dengue virus infection, while being a male increases the risk of dengue virus infection. More studies are needed to evaluate the impact of the AST/platelet count ratio index on the severity of dengue fever infection during the onset of symptoms and course of treatment.

Prescription Opioid Misuse Index in sickle cell patients: A brief questionnaire to assess at-risk for opioid abuse.

OBJECTIVE: To develop a survey instrument to identify adult sickle cell disease (SCD) patients on chronic opioid therapy who are at-risk for opioid abuse. DESIGN: Prospective survey and interview. SETTING: Adult SCD clinic in a large urban teaching facility. PATIENTS/PARTICIPANTS: Convenience sampling of adult patients presenting to the sickle cell clinic. INTERVENTIONS: None. MAIN OUTCOME: Primary outcome was "at-risk for opioid misuse," defined as at least 3/8 "yes" answers (a positive composite score) on the Prescription Opioid Misuse Index (POMI) questionnaire. Secondary outcome was DSM-IV criteria for substance abuse using the DSM IV Diagnostic Interview Schedule. RESULTS: Of the 99 patients who completed the POMI, the mean age was 36 years; 58.6 percent were female, 48 percent were hemoglobin SS (47/99), and 26 percent were SC (26/99). Twenty-four percent (24/99) were identified as at-risk for opioid misuse using the POMI. There were no differences in demographic, SCD genotype, or socioeconomic variables for at-risk versus not-at-risk patients. CONCLUSION: Twenty-four percent of unselected adult SCD patients on opioids were identified as at-risk for opioid misuse using a quick survey. This may represent as much as 2.5-7 times the national misuse rate. This group of patients may benefit from additional diagnostic and therapeutic interventions to help understand and manage their opioid usage.

Controlling for confounding via propensity score methods can result in biased estimation of the conditional AUC: A simulation study.

In the medical literature, there has been an increased interest in evaluating association between exposure and outcomes using nonrandomized observational studies. However, because assignments to exposure are not random in observational studies, comparisons of outcomes between exposed and nonexposed subjects must account for the effect of confounders. Propensity score methods have been widely used to control for confounding, when estimating exposure effect. Previous studies have shown that conditioning on the propensity score results in biased estimation of conditional odds ratio and hazard ratio. However, research is lacking on the performance of propensity score methods for covariate adjustment when estimating the area under the ROC curve (AUC). In this paper, AUC is proposed as measure of effect when outcomes are continuous. The AUC is interpreted as the probability that a randomly selected nonexposed subject has a better response than a randomly selected exposed subject. A series of simulations has been conducted to examine the performance of propensity score methods when association between exposure and outcomes is quantified by AUC; this includes determining the optimal choice of variables for the propensity score models. Additionally, the propensity score approach is compared with that of the conventional regression approach to adjust for covariates with the AUC. The choice of the best estimator depends on bias, relative bias, and root mean squared error. Finally, an example looking at the relationship of depression/anxiety and pain intensity in people with sickle cell disease is used to illustrate the estimation of the adjusted AUC using the proposed approaches.

Choosing between the BP and BN sequential strategies.

Cost and burden of diagnostic testing may be reduced if fewer tests can be applied. Sequential testing involves selecting a sequence of tests, but only administering subsequent tests dependent on results of previous tests. This research provides guidance to choosing between single tests or the believe the positive (BP) and believe the negative (BN) sequential testing strategies, using accuracy (as measured by the Youden Index) as the primary determinant. Approximately 75% of the parameter combinations examined resulted in either BP or BN being recommended based on a higher accuracy at the optimal point. In about half of the scenarios BP was preferred, and the other half, BN, with the choice often a function of the value of the ratio of standard deviations of those without and with disease (b). Large values of b for the first test of the sequence tended to be associated with preference for BN as opposed to BP, while small values of b appear to favor BP. When there was no preference between sequences and/or single tests based on the Youden Index, cost of the sequence was considered. In this case, disease prevalence plays a large role in the selection of strategies, with lower values favoring BN and sometimes higher values favoring BP. The cost threshold for the sequential strategy to be preferred over a single, more accurate test, was often quite high. It appears that while sequential strategies most often increase diagnostic accuracy over a single test, sequential strategies are not always preferred.

Modeling risk assessment for breast cancer in symptomatic women: a Saudi Arabian study.

BACKGROUND: Despite the continuing increase in the breast cancer incidence rate among Saudi Arabian women, no breast cancer risk-prediction model is available in this population. The aim of this research was to develop a risk-assessment tool to distinguish between high risk and low risk of breast cancer in a sample of Saudi women who were screened for breast cancer. METHODS: A retrospective chart review was conducted on symptomatic women who underwent breast mass biopsies between September 8, 2015 and November 8, 2017 at King Abdulaziz Medical City, Riyadh, Saudi Arabia. RESULTS: A total of 404 (63.8%) malignant breast biopsies and 229 (36.2%) benign breast biopsies were analyzed. Women ≥40 years old (aOR: 6.202, CI 3.497-11.001, P=0.001), hormone-replacement therapy (aOR 24.365, 95% CI 8.606-68.987, P=0.001), postmenopausal (aOR 3.058, 95% CI 1.861-5.024, P=0.001), and with a family history of breast cancer (aOR 2.307, 95% CI 1.142-4.658, P=0.020) were independently associated with an increased risk of breast cancer. This model showed an acceptable fit and had area under the receiver-operating characteristic curve of 0.877 (95% CI 0.851-0.903), with optimism-corrected area under the curve of 0.865. CONCLUSION: The prediction model developed in this study has a high ability in predicting increased breast cancer risk in our facility. Combining information on age, use of hormone therapy, postmenopausal status, and family history of breast cancer improved the degree of discriminatory accuracy of breast cancer prediction. Our risk model may assist in initiating population-screening programs and prompt clinical decision making to manage cases and prevent unfavorable outcomes.

AAAPT Diagnostic Criteria for Acute Sickle Cell Disease Pain.

Acute pain episodes are the most common complication in patients with sickle cell disease (SCD). Classically attributed to vaso-occlusion, recent insights suggest that chronic pain may also contribute to the pathogenesis of acute pain episodes, which adds complexity to their diagnosis and management. A taxonomy, or classification system, for acute pain in patients with SCD would aid research efforts and enhance clinical care. To meet this need, the Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks public-private partnership with the U.S. Food and Drug Administration, the American Pain Society, and the American Academy of Pain Medicine formed the Analgesic, Anesthetic, and Addiction Clinical Trial Translations, Innovations, Opportunities, and Networks-American Pain Society-American Academy of Pain Medicine Pain Taxonomy initiative. One of the goals of this initiative was to develop taxonomies for acute pain disorders, including SCD. To accomplish this, a working group of experts in SCD and pain was convened. Based on available literature and expert opinion, the working group used a 5-dimenional structure (diagnostic criteria, common features, modulating factors, impact/functional consequences, and putative mechanisms) to develop an acute pain taxonomy that is specific to SCD. As part of this, a set of 4 diagnostic criteria, with 2 modifiers to account for the influence of chronic pain, are proposed to define the types of acute pain observed in patients with SCD. PERSPECTIVE: This article presents a taxonomy for acute pain in patients with SCD. This taxonomy could help to standardize definitions of acute pain in clinical studies of patients with SCD.

Improving risk prediction for pancreatic cancer in symptomatic patients: a Saudi Arabian study.

BACKGROUND: Imaging tests used in our center are usually inadequate to confirm the high risk for pancreatic cancer. We aimed to use a combination of potential predictors including imaging tests to quantify the risk of pancreatic cancer and evaluate its utility. METHODS: This was a retrospective cohort study of patients who were suspected as having pancreatic cancer and underwent biopsy examination of pancreatic mass at King Abdulaziz Medical City, Riyadh, Saudi Arabia, between January 1, 2013, and December 31, 2016. We retrieved data on demographics, clinical history, imaging tests, and final pancreatic diagnosis from medical records. RESULTS: Of the 206 who underwent pancreatic biopsies, the mean age was 63.6 years; 54.4% were male. Of all the biopsies, 57.8% were malignant and 42.2% were benign masses. Nine factors contributed significantly to the risk of pancreatic cancer and were noted: older age (adjusted odds ratio [aOR] =1.048; P=0.010), male gender (aOR =4.670; P=0.008), weight loss (aOR =14.810; P=0.001), abdominal pain (aOR =7.053; P=0.0.001), blood clots (aOR =20.787; P=0.014), pancreatitis (aOR =4.473; P=0.021), jaundice (aOR =7.446; P=0.003), persistent fatigue (aOR =22.015; P=0.015), and abnormal imaging tests (aOR =67.124; P=0.001). The model yielded powerful calibration (P=0.953), excellent predictive utility (area under the receiver operating characteristic curve 96.3%; 95% CI =94.1, 98.6), with optimism-corrected area under the curve bootstrap resampling of 94.9%. An optimal cut-off risk probability of 0.513 yielded a sensitivity of 94% and specificity of 84.7% for risk classification. CONCLUSION: The study developed and validated a risk model for quantifying the risk of pancreatic cancer. Nine characteristics were associated with increased risk of pancreatic cancer. This risk assessment model is feasible and highly sensitive and could be useful to improve screening performance and the decision-making process in clinical settings in Saudi Arabia.

Emergency department 72-hour revisits among children with chronic diseases: a Saudi Arabian study.

BACKGROUND: Emergency Department (ED) revisits have often been used as an indicator of medical care quality. This study aimed to quantify the frequency of ED revisits within 72 h of discharge and identify its factors among children with chronic diseases. METHODS: We designed a retrospective cohort study of children with at least one chronic disease who were also under 18 years of age and had attended and were discharged from the ED at King Abdullah Specialist Children's Hospital (KASCH-RD), Riyadh, Saudi Arabia between April 19, 2015 and July 29, 2017. The outcome measure was the frequency of ED revisits during a period of 72 h after discharge. RESULTS: The study included 11,057 ED discharges of children with at least one chronic disease. Their revisit rate was 1211 (11%), with 83 (6.9%) having had a second ED revisit within 72 h of ED discharge. According to ICD-10 codes, the most common causes of ED revisits were respiratory, digestive, genitourinary, symptoms, and external causes. Factors of frequent ED revisits within 72 h were young age, institutional health insurance coverage, year of new health information system (2015), external causes, and genitourinary. CONCLUSION: The rate of 72-h ED revisits after discharge of children with chronic diseases treated at KASCH-RD was relatively high, and was associated with young age, institutional health insurance coverage, year of a new health information system implementation, and external causes of ED visit. These study findings amplify the need for intervention to reduce the rate of early ED revisits among children with chronic diseases.

Predictive Ability of Intermittent Daily Sickle Cell Pain Assessment: The PiSCES Project.

Background: Pain diary assessment in sickle cell disease (SCD) may be expensive and impose a high respondent burden. Objective: To report whether intermittent assessment could substitute for continuous daily pain assessment in SCD. Design: Prospective cohort study. Setting: Academic and community practices in Virginia. Patients. A total of 125 SCD patients age 16 years or older in the Pain in Sickle Cell Epidemiology Study. Measurements. Using pain measures that summarized all diaries as the gold standard, we tested the statistical equivalence of four alternative strategies that summarized diaries only from the week prior or the month prior to study completion; one week per month; or one day per week (random day). Summary measures included percent pain days, percent crisis days (self-defined), mean pain (0-9 Likert scale) on all days, and mean pain on pain days. Equivalence tests included comparisons of means, regression intercepts, and slopes, as well as measurement of R2. Results: Compared with the gold standard, the one-day-per-week and one-week-per-month strategies yielded statistically equivalent means of six summary pain measures, and the week prior and month prior yielded equivalent means as some of the measures. Regression showed statistically equivalent slopes and intercepts to the gold standard using one-day-per-week and one-week-per-month strategies for percent pain days and percent crisis days, but almost no other equivalence. R2 values ranged from 0.64 to 0.989. Conclusions: It is possible to simulate five- to six-month daily assessment of pain in SCD. Either one-day-per-week or one-week-per-month assessment yields an equivalent mean and fair regression equivalence.

The prevalence of abnormal leukocyte count, and its predisposing factors, in patients with sickle cell disease in Saudi Arabia.

INTRODUCTION: High white blood cell (WBC) count is an indicator of sickle cell disease (SCD) severity, however, there are limited studies on WBC counts in Saudi Arabian patients with SCD. The aim of this study was to estimate the prevalence of abnormal leukocyte count (either low or high) and identify factors associated with high WBC counts in a sample of Saudi patients with SCD. METHODS: A cross-sectional and retrospective chart review study was carried out on 290 SCD patients who were routinely treated at King Fahad Hospital in Hofuf, Saudi Arabia. An interview was conducted to assess clinical presentations, and we reviewed patient charts to collect data on blood test parameters for the previous 6 months. RESULTS: Almost half (131 [45.2%]) of the sample had abnormal leukocyte counts: low WBC counts 15 (5.2%) and high 116 (40%). High WBC counts were associated with shortness of breath (P=0.022), tiredness (P=0.039), swelling in hands/feet (P=0.020), and back pain (P=0.007). The mean hemoglobin was higher in patients with normal WBC counts (P=0.024), while the mean hemoglobin S was high in patients with high WBC counts (P=0.003). After adjustment for potential confounders, predictors of high WBC counts were male gender (adjusted odds ratio [aOR]=3.63) and patients with cough (aOR=2.18), low hemoglobin (aOR=0.76), and low heart rate (aOR=0.97). CONCLUSION: Abnormal leukocyte count was common: approximately five in ten Saudi SCD patients assessed in this sample. Male gender, cough, low hemoglobin, and low heart rate were associated with high WBC count. Strategies targeting high WBC count could prevent disease complication and thus could be beneficial for SCD patients.

Comorbidity, Pain, Utilization, and Psychosocial Outcomes in Older versus Younger Sickle Cell Adults: The PiSCES Project.

Background. Patients with SCD now usually live well into adulthood. Whereas transitions into adulthood are now often studied, little is published about aging beyond the transition period. We therefore studied age-associated SCD differences in utilization, pain, and psychosocial variables. Methods. Subjects were 232 adults in the Pain in Sickle Cell Epidemiology Study (PiSCES). Data included demographics, comorbidity, and psychosocial measures. SCD-related pain and health care utilization were recorded in diaries. We compared 3 age groups: 16-25 (transition), 26-36 (younger adults), and 37-64 (older adults) years. Results. Compared to the 2 adult groups, the transition group reported fewer physical challenges via comorbidities, somatic complaints, and pain frequency, though pain intensity did not differ on crisis or noncrisis pain days. The transition group utilized opioids less often, made fewer ambulatory visits, and had better quality of life, but these differences disappeared after adjusting for pain and comorbidities. However, the transition group reported more use of behavioral coping strategies. Conclusion. We found fewer biological challenges, visits, and better quality of life, in transition-aged versus older adults with SCD, but more behavioral coping. Further study is required to determine whether age-appropriate health care, behavioral, or other interventions could improve age-specific life challenges of patients with SCD.

Effect of a Home-Based Palliative Care Program on Healthcare Use and Costs.

OBJECTIVES: To evaluate the nonclinical outcomes of a proactive palliative care program funded and operated by a health system for Medicare Advantage plan beneficiaries. DESIGN: Observational, retrospective study using propensity-based matching. SETTING: A health system in southern California. PARTICIPANTS: Individuals who received the intervention between 2007 and 2014 (n = 368) were matched with 1,075 comparison individuals within each of four disease groups: cancer, chronic obstructive pulmonary disease, heart failure, and dementia. All were known to be dead at the time of the retrospective study, were Medicare Advantage beneficiaries, and had 2 years of usage data before death. Median age at death for each disease group was older than 80. INTERVENTION: Home- and clinic-based palliative care (PC) services provided by a multidisciplinary team. MEASUREMENTS: Outcomes included hospital costs, other healthcare costs, readmission rates, hospital admissions and bed days, intensive care unit use in final 30 days of life, and death within 30 days of an admission. RESULTS: Intervention participants in all four disease groups had less hospital use and lower hospital costs nonintervention participants, which drove lower overall healthcare costs. In the final 6 months of life, healthcare costs for the intervention groups stayed largely the same from month to month, whereas costs for comparison participants increased dramatically. CONCLUSION: In the context of an alternative payment model in which the provider was "at risk" of bearing the costs of care, a proactive PC program helped to avoid the escalation in hospital use and costs commonly seen in the final months of life.

Saudi SCD patients' symptoms and quality of life relative to the number of ED visits.

BACKGROUND: Individuals living with sickle cell disease (SCD) have significantly increased emergency department (ED) use compared to the general population. In Saudi Arabia, health care is free for all individuals and therefore has no bearing on increased ED visits. However, little is known about the relationship between quality of life (QoL) and frequency of acute care utilization in this patient population. METHODS: A cross-sectional study was conducted on 366 patients with SCD who attended the outpatient department at King Fahad Hospital, Hofuf, Saudi Arabia. Data were collected through self-administered surveys, which included: demographics, SCD-related ED visits, clinical issues, and QoL levels. We assessed the ED use by asking for the number of SCD-related ED visits within a 6-month period. RESULTS: The self-report survey of ED visits was completed by 308 SCD patients. The median number of SCD-related ED visits within a 6-month time period (IQR) was four (2-7 visits). According to the unadjusted negative binomial model, the rate of SCD-related ED visits increased by (46, 39.3, 40, and 53.5 %) for patients with fever, skin redness with itching, swelling, and blood transfusion, respectively. Poor QoL tends to increase the rate of SCD-related ED visits. Well education and poor general health positively influenced the rate of SCD-related ED visits. Well education tends to increase the rate of SCD-related ED visits by 50.2 %. The rate of SCD-related ED visits decreased by 1.4 % for every point increase in general health. CONCLUSION: Saudi patients with sickle cell disease reported a wide range of SCD-related ED visits. It was estimated that six of 10 SCD patients had at least three ED visits within a 6-month period. Well education and poor general health resulted in an increase in the rate of SCD-related ED visits.

Health-related quality of life in patients with sickle cell disease in Saudi Arabia.

BACKGROUND: There is a lack of research concerning health-related quality of life (HRQoL) in Saudi patients with sickle cell disease (SCD), particularly among adult populations. The aim of the current study was to describe the characteristics of SCD patients and their impact on their quality of life (QoL). METHODS: Six hundred twenty-nine adult SCD patients who attended King Fahad Hospital in Hofuf and King Fahad Central Hospital in Jazan were included in the analysis. Demographic/clinical data were collected and an Arabic version of the Medical Outcomes 36-Item Short-Form Health Survey (SF-36) questionnaire was used to assess QoL. RESULTS: SCD patients who hold a university degree reported positive impacts on the following domains of SF-36: physical role function, vitality, emotional well being, social function, pain reduction, and general health (P = .002, P = .001, P = .001, P = .003, P = .004, and P = .001, respectively). In general, patients with fever, skin redness, swelling, or history of blood transfusion tended to impair the health status of the SF-36. A multivariate analysis revealed that patients with a university degree tended to report high scores of physical role functions, emotional role function, and vitality. Patients with regular exercise tend to increase vitality, social function, general health, and reduce pain. Unemployment tends to lessen vitality and worsen pain. On average, pain, social function, and physical function scores tended to worsen in patients with swelling or history of blood transfusion. CONCLUSIONS: This study highlighted that poor education, fever, skin redness, and swelling were negatively associated with specific components of SF-36. SCD patients with a history of blood transfusion found their QoL poorer, whereas regular exercise tended to improve QoL.

Daily home opioid use in adults with sickle cell disease: The PiSCES project.

BACKGROUND: Although opioid prescribing in sickle cell disease (SCD) can be controversial, little is published about patterns of opioid use. OBJECTIVE: To report on home opioid use among adults with SCD. DESIGN: Cohort study. PARTICIPANTS: Adults with SCD (n=219) who completed daily pain diaries for up to 6 months and had at least one home pain day. MAIN MEASURES: Use of long-acting or short-acting opioids, other analgesics, or adjuvants; the proportion of home days, home pain days, and home crisis days with opioid use; these two outcomes according to patient characteristics. KEY RESULTS: Patients used opioids on 12,311 (78 percent) of 15,778 home pain days. Eighty-five patients (38.8 percent) used long-acting opioids with or without short-acting opioids and 103 (47.0 percent) used only short-acting opioids. Twenty-one (9.6 percent) patients used only non-opioid analgesics and 10 (4.6 percent) used no analgesics. Both pain intensity and pain frequency were higher among opioid users (analysis of variance [ANOVA], p<0.0001). Opioid users used hydroxyurea more often than nonusers, even when controlling for mean pain on pain days. Among all patients, significant relationships were found between any opioid use and somatic symptom burden, SCD stress, negative coping, and physical and mental quality of life (QOL); the relationship with SCD stress and physical QOL remained when controlled for mean pain. Among opioid users, similar associations were found between frequency of opioid use and some disease-related and psychosocial variables. CONCLUSIONS: In this adult SCD sample, opioids were used by the majority of patients. Pain was the overwhelming characteristic associated with use, but disease-related and psychosocial variables were also associated.

Global Outcome and Late Seizures After Penetrating Versus Closed Traumatic Brain Injury: A NIDRR TBI Model Systems Study.

BACKGROUND: If and how much dural penetration influences long-term outcome after traumatic brain injury (TBI) is understudied, especially within the civilian population. OBJECTIVES: Using the large TBI Model Systems cohort, this study assessed and compared penetrating TBI (PTBI) and closed TBI with respect to global outcome and late seizures 2 years after injury. METHODS: After performing unadjusted PTBI versus closed TBI comparisons, multivariate regression models were built and analyzed for both outcomes by including the following additional predictors: length of unconsciousness, posttraumatic amnesia duration, hospital length of stay, age, gender, race, marital status, education level, problem substance abuse, and preinjury employment status. RESULTS: The collapsed Glasgow Outcome Scale model (n = 6111) showed significant secondary effects of PTBI with employment status. When employed before injury, individuals with PTBI were 2.62 times more likely (95% confidence interval, 1.92-3.57) to have a lower Glasgow Outcome Scale category. The final model for late seizures (n = 6737) showed a significant main effect for PTBI. Adjusting for other predictors, individuals with PTBI were 2.78 times more likely (95% confidence interval, 1.93-3.99) than those with closed TBI to be rehospitalized for a seizure. CONCLUSION: This study empirically demonstrates that penetrating injury mechanism has important prognostic implications.