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ABSTRACT: We assessed the feasibility to estimate illness burden in adults with SCD, investigated factors associated with health-related quality of life (HRQoL), and estimated societal burden. We recruited 32 participants and collected data on fatigue, HRQoL, and work productivity and activity impairment via patient survey. Health care utilization was abstracted for the 12 months before enrollment using medical chart review. Mean age was 36.7 years; 84.4% of participants had hemoglobin SS or Sßthal0 disease, and 81.3% reported chronic pain (experiencing pain on ≥3 days per week in the past 6 months). Mean EQ-5D-3L visual analogue scale score was 63.4 and the index score was 0.79. The mean fatigue score was 57.9. Higher fatigue score was correlated with lower EQ-5D index score (correlation coefficient r = -0.35; P = .049) and Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) scores, including pain (r = -0.47; P = .006), sleep (r = -0.38; P = .03), and emotion scores (r = -0.79; P < .0001). The number of hospitalizations was negatively correlated with HRQoL (all P < .05). Patients who reported chronic pain had significantly lower mean ASCQ-Me sleep scores (48.3 vs 57.1; P = .04) and EQ-5D index scores (0.72 vs 0.89; P = .002) than those without chronic pain. Mean estimated annual per person costs were $51 779 (median, $36 366) for total costs, $7619 ($0) for indirect costs (estimated from lost earnings of participants), and $44 160 ($31 873) for medical costs. Fatigue, SCD complications, hospitalization, and chronic pain negatively affected HRQoL. This sample experienced a high economic burden, largely from outpatient doctor visits.
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Anemia de Células Falciformes , Costo de Enfermedad , Calidad de Vida , Humanos , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/economía , Adulto , Proyectos Piloto , Masculino , Femenino , Persona de Mediana Edad , Fatiga/etiologíaRESUMEN
INTRODUCTION: The Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a patient-reported outcome tool that assesses quality of life and disease burden in people with haemophilia (PWH). AIM: To assesses the test-retest reliability of PROBE when completed using the mobile phone application. METHODS: We recruited PWH, including carriers, and individuals with no bleeding disorders who attended haemophilia-related workshops or via social media. Participants completed PROBE three times (twice on the app: T1 and T2, and once on the web, T3). Test-retest reliability was analysed for T1 versus T2 (app to app, time period one) and T2 versus T3 (app to web, time period two). RESULTS: We enrolled 48 participants (median age = 56 [range 27-78] years). Eighteen participants (37.5%) were PWH and seven (14.6%) were carriers. On general health domain questions, we found almost perfect agreement, except for a question on the frequency of use of pain medication in the last 12 months [Kappa coefficient (κ) .72 and .37 for time period one and two, respectively] and any use of pain medications (κ .75) for time period two. For haemophilia-related questions, we found substantial to perfect agreement, except for the questions on the number of joint bleeds in the previous 6 months for time period one (κ .49) and the number of bleeds in the previous two weeks for time period two (κ .34). CONCLUSIONS: The results demonstrate the reliability of the PROBE app. The app can be used interchangeably with the paper and web platforms for PROBE administration.
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Hemofilia A , Aplicaciones Móviles , Medición de Resultados Informados por el Paciente , Humanos , Adulto , Persona de Mediana Edad , Masculino , Anciano , Femenino , Hemofilia A/complicaciones , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Calidad de VidaRESUMEN
INTRODUCTION: The opioid overdose crisis in the United States has become a significant national emergency. Buprenorphine, a primary medication for individuals coping with opioid use disorder (OUD), presents promising pharmacokinetic properties for use in primary care settings, and is often delivered as a take-home therapy. The COVID-19 pandemic exacerbated the scarcity of access to buprenorphine, leading to dire consequences for those with OUD. Most existing studies, primarily focused on the immediate aftermath of the COVID-19 outbreak, highlight the challenges in accessing medications for opioid use disorder (MOUDs), particularly buprenorphine. However, these studies only cover a relatively short timeframe. METHODS: To bridge this research gap, in our study, we utilized 33 months of California's prescription drug monitoring program (PDMP) data to provide insights into real-world buprenorphine dispensing trends since the onset of the pandemic from 2018 to 2021, focusing on outcomes such as patient counts, prescription volumes, prescriber involvement, days' supply, and dosage. Statistical analysis employed interrupted time series analysis to measure changes in trends before and during the pandemic. RESULTS: We found no significant impact on patient counts or prescription volumes during the pandemic, although it impeded the upward trajectory of prescriber numbers that was evident prior to the onset of the pandemic. An immediate increase in days' supply per prescription was observed post-pandemic. CONCLUSION: Our findings differ in comparison to previous data regarding the raw monthly count of patients and prescriptions. The analysis encompassed uninsured patients, offering a comprehensive perspective on buprenorphine prescribing in California. Our study's insights contribute to understanding the impact of COVID-19 on buprenorphine access, emphasizing the need for policy adjustments.
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Primary care physicians (PCPs) play an indispensable role in providing comprehensive care and referring patients for specialty care and other medical services. As the COVID-19 outbreak disrupts patient access to care, understanding the quality of primary care is critical at this unprecedented moment to support patients with complex medical needs in the primary care setting and inform policymakers to redesign our primary care system. The traditional way of collecting information from patient surveys is time-consuming and costly, and novel data collection and analysis methods are needed. In this review paper, we describe the existing algorithms and metrics that use the real-world data to qualify and quantify primary care, including the identification of an individual's likely PCP (identification of plurality provider and major provider), assessment of process quality (for example, appropriate-care-model composite measures), and continuity and regularity of care index (including the interval index, variance index and relative variance index), and highlight the strength and limitation of real world data from electronic health records (EHRs) and claims data in determining the quality of PCP care. The EHR audits facilitate assessing the quality of the workflow process and clinical appropriateness of primary care practices. With extensive and diverse records, administrative claims data can provide reliable information as it assesses primary care quality through coded information from different providers or networks. The use of EHRs and administrative claims data may be a cost-effective analytic strategy for evaluating the quality of primary care.
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Benchmarking , COVID-19 , Humanos , Estados Unidos , COVID-19/epidemiología , Encuestas y Cuestionarios , Atención Primaria de Salud , AlgoritmosRESUMEN
INTRODUCTION: People with haemophilia rely on specialists for their care, yet the specific dosing regimens of treatments prescribed by these specialists have not been widely studied. AIM: The objective of this study is to describe trends in clinician prescribing practices for the management of haemophilia in the United States (US). METHODS: We administered surveys to members of the Hemostasis and Thrombosis Research Society via paper surveys at its in-person annual symposia in 1999 and 2015, and an online survey in 2021. The surveys collected information on haemophilia treatments including factor dosing, inhibitor therapy and gene therapy. RESULTS: Clinicians treating haemophilia for more than 50% of their practice time have increased from 37.5% of respondents in 1999 to 46.3% in 2021. Clinicians prescribing factor concentrates at >40 units/kg for routine bleeding events increased from 0% in 1999 to 29.3% in 2021 in haemophilia A (HA) and from 22.5% to 87.8% in haemophilia B (HB). In 2021, the clinicians reported prescribing emicizumab to treat HA patients (>89.5% paediatric, >85.7% adult) with or without inhibitors at least some of the time. Approximately 78.0% of respondents reported that they expected to recommend gene therapy at least some of time. CONCLUSION: These data indicate changing trends in prescribing practices among US haemophilia specialists during the past 22 years. Preference for high doses of factor (>40 units/kg) has increased during this period. Emicizumab prophylaxis has been prescribed for patients with and without HA inhibitors. Clinicians expect gene therapy to have value for some haemophilia patients.
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Anticuerpos Biespecíficos , Hemofilia A , Hemofilia B , Adulto , Humanos , Niño , Hemofilia A/tratamiento farmacológico , Hemofilia B/tratamiento farmacológico , Hemorragia/tratamiento farmacológico , Anticuerpos Biespecíficos/uso terapéutico , Factor VIII/uso terapéuticoRESUMEN
OBJECTIVE: We assessed sociodemographic and clinical characteristics associated with depression and anxiety in individuals with Von Willebrand disease (VWD) aged ≥12 years. METHODS: The study collected data on patients' sociodemographic, joint problems and health-related quality of life (HRQoL) using EQ-5D-3L, 8-item patient health questionnaire for depression and 7-item Generalized Anxiety Disorder Questionnaire from participants in seven geographically diverse US haemophilia treatment centres. RESULTS: Analyses included 77 participants. The rates of depression and anxiety were 63.6% and 58.3%, respectively. Persons with low VWF displayed higher rates of depression (86.7%) or anxiety (69.2%) compared to those with VWD (58.1%, p = .04 for depression, and 55.9%, p = .38 for anxiety). Logistic regression analyses demonstrated that having joint problems (odds ratio [OR] = 6.3, confidence interval [CI] = 2.0-20.1) was the most important variable associated with depression, followed by being single, divorced, widowed, or separated in adult participants or parents of participants age < 18 years (OR = 7.0, CI = 1.7-29.0. The most important variable associated with anxiety was being single or lacking a partner (OR = 10.8, CI = 2.5-47.5), followed by age 12-17 years old (OR = 6.7, CI = 1.6-26.9), or having worse health compared to 3-months ago (OR = 12.3, CI = 1.3-116.2). Mean covariates adjusted EQ visual analogue scale score was significantly lower among persons with depression (68.77 ± 3.15 vs. 77.58 ± 4.24, p = .03) than those without depression. CONCLUSIONS: Our study revealed concerning levels of depression and anxiety in this VWD sample. Lack of social support was determined an important factor associated with depression and anxiety in this sample. Mental health screening is critical in VWD clinical evaluation and care.
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Enfermedades de von Willebrand , Adulto , Humanos , Niño , Adolescente , Enfermedades de von Willebrand/complicaciones , Enfermedades de von Willebrand/epidemiología , Enfermedades de von Willebrand/diagnóstico , Factor de von Willebrand/análisis , Depresión/complicaciones , Depresión/epidemiología , Calidad de Vida , Ansiedad/complicaciones , Ansiedad/epidemiología , Trastornos de Ansiedad/complicaciones , Trastornos de Ansiedad/epidemiologíaRESUMEN
Purpose: We compare the impact of hemophilia on comorbidities, joint problems, health-related quality of life (HRQoL) and health-care utilization between two age groups: 40-49 years and ≥50 years. Patients and Methods: The HUGS VII study recruited persons with hemophilia A or B age ≥40 years. Participants completed surveys to collect data on sociodemographic and clinical characteristics, hemophilia treatment regimen, pain, joint problems, comorbidities, HRQoL, depression and anxiety, at baseline and 6-months later. Clinical chart reviews documented hemophilic severity and treatment. Results: The sample includes 69 males, 65.2% aged ≥50 years, 75.4% with hemophilia A. Individuals ≥50 years were more likely to have mild or moderate hemophilia (68.9% vs 41.7%, P = 0.03) than those 40-49 years old. Among persons with mild/moderate hemophilia, those ≥50 years old reported a higher rate of joint pain (83.9% vs 70.0%, P = 0.34 at baseline, 91.3% vs 57.1%, P = 0.06 at follow up) or range of motion limitation (73.3% vs 60.0%, P = 0.43 at baseline, 73.9% vs 28.6%, P = 0.04 at follow up) than the younger group. Compared to the younger group, the older group reported fewer emergency room visits (4.5% vs 21.7%, P = 0.03), and physical therapy visits (15.9% vs 43.5%, P = 0.01) at baseline. The sample depression rate was 85.7%, but the differences among the age groups were not significant. The mean covariate-adjusted EQ-5D index score was lower in older persons (0.77 vs 0.89, P = 0.02). Conclusion: Older persons with hemophilia in this sample are over-represented by individuals with mild/moderate disease, potentially due to premature death among those with severe disease. Although this group included a larger proportion of individuals with mild disease than the younger group, they experienced lower quality of life, more comorbidities both of aging and of hemophilic arthropathy, and lower rates of health-care utilization.
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Introduction: The opioid epidemic persists in the United States. The use of opioid medications is often assessed by claims data but potentially underestimated. Objectives: We evaluated the temporal trend in the use of opioid and nonopioid pain medications from a national survey. Methods: Using data from the 2001 to 2018 National Health and Nutrition Examination Survey (NHANES), we examined the current use of prescription analgesics in the past 30 days among 50,201 respondents aged 20 years or older. Joinpoint regressions were used to test statistically meaningful trends of opioid vs nonopioid analgesics. Results: The mean percentage of people who had pain medications in the past 30 days was 6.4% (5.3%-7.1%) for opioid and 11.3% (9.0%-14.8%) for nonopioid analgesics. The availability of opioid and nonopioid prescriptions at home has remained stable, except for the slight decline of opioids among cancer-free patients in 2005 to 2018. The most frequently used opioid analgesic medications included hydrocodone/acetaminophen, tramadol, and hydrocodone. Conclusion: We uniquely measured the proportion of people who had opioid and nonopioid pain medications at home in the United States and supplemented the previous knowledge of prescription rates mainly obtained from claims data.
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BACKGROUND: Knowledge about sexual health, difficulty with sexual activity and intimacy (sexual difficulty), in people with hemophilia is little understood. OBJECTIVES: The objectives were to determine the prevalence of sexual difficulty in people living with hemophilia (PWH) compared to people with no bleeding disorders (PWNoBD), and to determine factors associated with it. METHODS: This was an analysis of the PROBE study. We recruited individuals who had hemophilia A or B (PWH) and PWNoBD who were 18 years old or older. We calculated proportions of participants with sexual difficulty and odds ratios (ORs) adjusted for sex and age with 95% confidence intervals. RESULTS: There were 2007 PWH and 1972 PWNoBD. Mean (standard deviation) age was 41 (15) years in PWH and 42 (13) years in PWNoBD. Sexual difficulty was reported in 302 (15.1%) PWH and 79 (4.0%) PWNoBD. The odds of sexual difficulty were significantly higher in PWH (OR 3.82, 95% CI 2.85, 5.11). Among PWH, older age, experiencing acute or chronic pain in the past 12 months, bleeds within the past two weeks, ≥3 spontaneous joint bleeds (past six months), limitation of range of motion of any joints, and any life- or limb-threatening bleeds in the past 12 months were associated with sexual difficulty. CONCLUSIONS: Sexual difficulty is more prevalent in people living with hemophilia and associated with markers of disease severity. Sexual health issues should be incorporated in comprehensive hemophilia care, future research, and hemophilia related health policy.
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Hemofilia A , Hemofilia B , Salud Sexual , Adolescente , Adulto , Anciano , Hemartrosis , Hemofilia A/complicaciones , Hemofilia B/complicaciones , Hemofilia B/epidemiología , Humanos , Rango del Movimiento ArticularRESUMEN
INTRODUCTION: There are limited data on the impact of haemophilia on health status and health-related quality of life (HRQL) in people with non-severe (mild and moderate) haemophilia. AIM: To evaluate the health status of people living with mild or moderate haemophilia. METHODS: Data on respondents with no bleeding disorder (NoBD), mild and moderate haemophilia patients were drawn from the PROBE study. Respondents were enrolled using network patient organizations. This analysis was performed as a cross-sectional study. Primary outcomes were reported bleeding, acute and chronic pain, activities of daily living and HRQL. RESULTS: A total of 862 respondents with NoBD (n = 173), mild (n = 102) and moderate (n = 134) haemophilia were eligible, with a median age of 33, 42 and 43, respectively. In relation to haemophilia-related sequalae, 53% of male and 29% of female patients with mild and 83% of males with moderate haemophilia had more than 2-3 bleeds in the last 12 months. Reporting of acute and chronic pain is less in those with NoBD compared to the mild and moderate cohorts for both genders. Multivariate analysis demonstrates significant reductions in quality of life using VAS, EQ-5D-5L and PROBE for males with mild and moderate haemophilia (P ≤ .001) with only PROBE indicating a significant reduction for females with mild (P = .002). CONCLUSION: People affected by mild or moderate haemophilia report a significant HRQL impact due to haemophilia-related bleeding. Future research is needed to identify the optimal care management of patients with mild and moderate haemophilia.
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Hemofilia A , Actividades Cotidianas , Estudios Transversales , Femenino , Estado de Salud , Hemofilia A/complicaciones , Humanos , Masculino , Calidad de VidaRESUMEN
OBJECTIVES: The objective was to explore the differences in medication use pattern of lipid-lowering drug (LLD) and antiplatelet agents among post-percutaneous coronary intervention patients with acute coronary syndrome aged <65 in Hong Kong (HK) and the USA. DESIGN: Retrospective study. SETTING: This study used deidentified claims data from Clinformatics Data Mart database (OptumInsight, Eden Prairie, Minnesota, USA) and electronic health records from HK Hospital Authority Clinical Data Analysis and Reporting System database. PARTICIPANTS: We used 1 year prescription records of LLDs and antiplatelet agents among 1013 USA patients and 270 HK Chinese patients in 2011-2013. PRIMARY AND SECONDARY OUTCOME MEASURES: Continuity was investigated on the assumption that one defined daily dose represented 1 day treatment. Medication possession ratio method was used to evaluate the adherence. Multivariate-adjusted logistic regressions were constructed to compare the good continuity and adherence levels in the merged database with the cutoffs set at 80%, and Cox proportional hazard models were built using the time to discontinuation as the dependent variable, to assess the persistence level. RESULTS: HK Chinese patients were less adherent (67.41% vs 84.60%, adjusted odds ratio (AOR) for Americans over Chinese=2.23 (95% CI=1.60 to 3.12), p<0.001) to antiplatelet agents compared with American patients but better adherent to statins (90.00% vs 78.18%, AOR=0.37 (0.23 to 0.58), p<0.001). The discontinuation with statins was more common in American patients (13.33% vs 34.25%, adjusted hazard ratio (AHR)=2.95 (2.05 to 4.24), p<0.001). Low-to-moderate potency statins and clopidogrel were favoured by our HK local physicians, while American patients received higher doses of statins and prasugrel. CONCLUSIONS: We seemed to find HK physicians tended to prescribe cheaper and lower doses of statins and antiplatelet agents when compared with the privately insured patients in the USA, though the adherence and persistence levels of HK patients with statins were relatively good.
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Síndrome Coronario Agudo/tratamiento farmacológico , Inhibidores de Hidroximetilglutaril-CoA Reductasas/uso terapéutico , Cumplimiento de la Medicación/estadística & datos numéricos , Inhibidores de Agregación Plaquetaria/uso terapéutico , Administración Oral , Anciano , Clopidogrel/uso terapéutico , Bases de Datos Factuales , Quimioterapia Combinada , Femenino , Hong Kong , Humanos , Masculino , Persona de Mediana Edad , Minnesota , Evaluación del Resultado de la Atención al Paciente , Intervención Coronaria Percutánea , Clorhidrato de Prasugrel/uso terapéutico , Modelos de Riesgos Proporcionales , Estudios Retrospectivos , Ticlopidina/uso terapéuticoRESUMEN
BACKGROUND: The Patient Reported Outcomes Burdens and Experience (PROBE) study has developed and validated the PROBE questionnaire for assessing patient-reported outcomes in people with haemophilia and participants without bleeding disorders. OBJECTIVE: To explore the regional variations in the international implementation of the PROBE questionnaire. METHODS: Data were collected from participants in four regions (Western Pacific, South America, North America and Europe). Participants were able to choose English or translated versions of the PROBE questionnaire into their first language. We used analysis of variance methods and multivariable regression to determine the relative contribution of the variance explained by region controlling for haemophilia diagnosis, age group and levels of educations. We also explored interactions between region and the other components. RESULTS: We used 862 questionnaires from 14 countries. Mean age of participants was 40.03 years (standard deviation 13.89), and 73.67% were male. After adjusting, region contributed 0.44%-7.98% of the variance component in subitem scores and 0.26% in the PROBE score. Years of education contributed 0.34% in the PROBE score. Age and haemophilia diagnosis contributed 3.42% and 22.42% of the PROBE score. CONCLUSIONS: The results demonstrate that the PROBE questionnaire is valid to implement for assessing health status among patients with haemophilia and participants without bleeding disorders across regions.
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Comparación Transcultural , Hemofilia A/epidemiología , Internacionalidad , Medición de Resultados Informados por el Paciente , Adulto , Femenino , Hemofilia A/etnología , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
BACKGROUND: The Patient Reported Outcomes, Burdens and Experiences (PROBE) study aims to develop and validate questionnaire for assessing health status in patients with haemophilia and participants without bleeding disorders. OBJECTIVE: To investigate the test-retest properties of the PROBE questionnaire. METHODS: The PROBE questionnaire covers four domains and is comprised of 29 questions. People with haemophilia (PWH) and participants without bleeding disorder were invited to participate in this study. All participants were asked to complete the PROBE questionnaire three times (paper-based survey on two consecutive days: T1 and T2 and then a web-based version: T3). Test-retest properties and percentage agreement were analysed. RESULTS: A total of 63 participants were enrolled in this study with a median age of 50 (range: 17-76) years. Of these, 30 (47.6%) were PWH. On the questions common to PWH and participants without bleeding disorder, Kappa coefficients ranged from 0.69 to 1.00, indicating substantial to almost perfect agreement (T1 vs T2). For haemophilia-related questions (T1 vs T2), Kappa coefficients ranged from 0.5 to 1.0. Of these, 5 of 11 items were in perfect agreement (Kappa = 1.0). The web-based questionnaire (T3) showed substantial to almost perfect agreement with the paper version (T1 test-retest properties were comparable between PWH and individuals without a bleeding disorder). CONCLUSIONS: The results suggest that PROBE is a reliable tool to assess patient-reported outcomes for PWH and benchmark data in participants without bleeding disorder. The web-based questionnaire and the standard paper-based version can be used interchangeably.
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Trastornos de la Coagulación Sanguínea Heredados/psicología , Costo de Enfermedad , Medición de Resultados Informados por el Paciente , Adolescente , Adulto , Anciano , Trastornos de la Coagulación Sanguínea Heredados/economía , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVE: To assess the psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. METHODS: This study was a cross-sectional, multinational study. Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disorder. Participants were invited through non-governmental patient organisations in 21 countries between 01/27/2016 and 02/23/2017. The following psychometric properties: missing data, floor and ceiling effects, exploratory factor analysis and internal consistency reliability were examined. A PROBE Score was derived and assessed for its convergent and known groups validity. RESULTS: The study analysed the data on 916 participants with median age of 37.0 (IQR 27.0 to 48.0) years, 74.8% male. In the domain assessing patient-reported outcomes (PROs), more than 15% of participants presented a ceiling effect for all items but two, and a floor effect for one item. Factor analysis identified three factors explaining the majority of the variance. Cronbach's alpha coefficient indicated good internal consistency reliability (0.84). PROBE items showed moderate to strong correlations with corresponding EuroQol five dimension 5-level instrument (EQ-5D-5L) domains. The PROBE Score has a strong correlation (r=0.67) with EQ-5D-5L utility index score. The PROBE Score has a known groups validity among various groups. CONCLUSIONS: The results of this study suggest that PROBE is a valid questionnaire for evaluating PROs in people with haemophilia as well as control population. The known-group property of PROBE will allow its use in future clinical trials, longitudinal studies, health technology assessment studies, routine clinical care or registries. Additional studies are needed to test responsiveness and sensitivity to change. TRIAL REGISTRATION NUMBER: NCT02439710; Results.
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Medición de Resultados Informados por el Paciente , Adulto , Trastornos de la Coagulación Sanguínea/psicología , Trastornos de la Coagulación Sanguínea/terapia , Costo de Enfermedad , Estudios Transversales , Análisis Factorial , Femenino , Hemofilia A/psicología , Hemofilia A/terapia , Humanos , Masculino , Psicometría , Encuestas y CuestionariosRESUMEN
AIM: The recommended low-density lipoprotein cholesterol (LDL-C) levels of the guideline may be appropriate for Caucasian patients but not for other ethnic groups. METHODS: A cohort study was conducted in Hong Kong, and acute coronary syndrome (ACS) patients who received percutaneous coronary intervention (PCI) between 2005 and 2015 were enrolled. The primary outcomes of interest were the total cost of care and cardiovascular-related cost during one-year follow-up. The cost difference by lipid goal attainments was analyzed by Poisson regression with multivariate treatment effects. The clinical outcomes achieved by lipid goal attainments in terms of major adverse cardiovascular events were analyzed by multivariate Cox regression. RESULTS: Among the 4638 patients, 79.50%, 48.64%, and 36.14% attained the LDL-C goals of ï¼2.6, ï¼2.0, and ï¼1.8 mmol/L for one year, respectively. Only about 16% patients achieved the ≥50% reduction from baseline. None of these lipid goals was associated with a significant reduction in the total cost of care. We only identified the clinical benefits associated with the lipid goal of ï¼2.6 mmol/L. Other more stringent lipid goals seemed to bring a significant economic burden on cardiovascular-related cost, but their clinical benefits were uncertain. CONCLUSIONS: Lowering LDL-C to achieve the guideline-recommended target levels for post-PCI ACS patients may lead to fewer cardiovascular events, but it may not necessarily lead to economic benefits within one year of follow-up.
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Biomarcadores/sangre , Enfermedad Coronaria/sangre , Enfermedad Coronaria/economía , Lípidos/sangre , Intervención Coronaria Percutánea/economía , Anciano , Estudios de Cohortes , Enfermedad Coronaria/terapia , Femenino , Estudios de Seguimiento , Humanos , Masculino , PronósticoRESUMEN
BACKGROUND: This study aimed to assess the effect of low-density lipoprotein cholesterol (LDL-C) goal attainments (of <2.6mmol/L and <1.8mmol/L) on first major adverse cardiovascular events (MACEs) for acute coronary syndrome (ACS) patients who underwent percutaneous coronary intervention (PCI). METHODS: A retrospective cohort study was conducted using case reviews of post-PCI ACS patients at an acute public hospital in Hong Kong between January 2009 and August 2015. Patients were followed from the date of PCI procedure until the first documented MACE (including all-cause death, myocardial infarction, heart failure, documented unstable angina, revascularization, and stroke) or to the end of the first year. Kaplan-Meier estimates were used to evaluate the impact of LDL-C goal attainments prior to the event on event-free time. RESULTS: A total of 1684 patients were identified (79.0% males). At one-year endpoint, 658 (39.1%) attained the LDL-C goal of <1.8mmol/L, 727 (43.2%) had the LDL-C level between 1.8mmol/L and 2.6mmol/L, and 299 (17.8%) had the LDL-C level≥2.6mmol/L. About 10% experienced a MACE within one year. After adjustment for other available risk factors, attainment of LDL-C goal <2.6mmol/L was significantly associated with lower rates of MACEs during the one-year follow-up; and those who achieved the LDL-C level of 1.8mmol/L did not seem to carry any incremental clinical benefits. CONCLUSIONS: Among post-PCI ACS patients, we merely observed a high correlation between the lipid goal attainment of <2.6mmol/L and MACEs through one-year follow-up, but not for the goal of <1.8mmol/L.
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Síndrome Coronario Agudo/sangre , Síndrome Coronario Agudo/epidemiología , Pueblo Asiatico , LDL-Colesterol/sangre , Intervención Coronaria Percutánea/tendencias , Síndrome Coronario Agudo/diagnóstico , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Estudios Transversales , Femenino , Estudios de Seguimiento , Hong Kong/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Estudios Retrospectivos , Resultado del TratamientoRESUMEN
OBJECTIVES: To determine US societal burden of illness, including direct and indirect costs and annual bleed rate (ABR), for persons with hemophilia B (HB), a rare and debilitating genetic disorder, and to examine associations of hemophilia severity and treatment regimens with costs and ABR. METHODS: From 2009 to 2014, the Hemophilia Utilization Group Studies Part Vb collected prospective data from 10 US hemophilia treatment centers. Participants with HB completed initial surveys on sociodemographic characteristics, clinical characteristics, and treatment patterns. During the 2-year follow-up, participants reported bleeding episodes, work absenteeism, and caregiver time quarterly. These data were used to calculate ABR and indirect costs. Direct costs were calculated using 1-year clinical chart records and 2-year dispensing records. RESULTS: Of the 148 participants, 112 with complete medical records and one or more follow-up survey were included. Total mean annual per-person costs were $85,852 (median $20,160) for mild/moderate HB, $198,733 (median $147,891) for severe HB, and $140,240 (median $63,617) for all participants without inhibitors (P < 0.0001). Mean ABR for participants with severe HB on prophylaxis (5.5 ± 7.9 bleeds/y) was almost half that of those treated episodically. Clotting factor and indirect costs accounted for 85% and 9% of total costs, respectively. Compared with episodic treatment, prophylaxis use was associated with 2.5-fold higher clotting factor costs (P < 0.01), low but significantly more missed parental workdays (P < 0.0001) and clinician (P < 0.001) or nursing visits (P < 0.0001), less part-time employment and unemployment, and lower hospitalizations costs (P = 0.17) and ABR (P < 0.0001). CONCLUSIONS: HB is associated with high economic burden, primarily because of clotting factor costs. Nevertheless, prophylaxis treatment leads to clinical benefits and may reduce other nonfactor costs.
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Factores de Coagulación Sanguínea/administración & dosificación , Costo de Enfermedad , Costos de la Atención en Salud/estadística & datos numéricos , Hemofilia B/terapia , Hemorragia/terapia , Absentismo , Adolescente , Adulto , Factores de Coagulación Sanguínea/economía , Cuidadores/estadística & datos numéricos , Niño , Preescolar , Empleo/estadística & datos numéricos , Femenino , Estudios de Seguimiento , Hemofilia B/economía , Hemofilia B/fisiopatología , Hemorragia/economía , Hemorragia/etiología , Hospitalización/economía , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios , Estados Unidos , Adulto JovenRESUMEN
Advocacy coalitions often play an important role in the state health policymaking process, yet little is known about their structure, composition, and behavior. In 2008, California became the first state to enact a menu labeling law. Using the advocacy coalition framework, we examine different facets of the coalitions involved in California's menu labeling policy debate. We use a qualitative research approach to identify coalition members and explore their expressed beliefs and policy arguments, resources, and strategies by analyzing legislative documents (n = 87) and newspaper articles (n = 78) produced between 1999 and 2009. Between 2003 and 2008, six menu labeling bills were introduced in the state's legislature. We found the issue received increasing media attention during this period. We identified two advocacy coalitions involved in the debate-a public health (PH) coalition and an industry coalition. State organizations acted as coalition leaders and participated for a longer duration than elected officials. The structure and composition of each coalition varied. PH coalition leadership and membership notably increased compared to the industry coalition. The PH coalition, led by nonprofit PH and health organizations, promoted a clear and consistent message around informed decision making. The industry coalition, led by a state restaurant association, responded with cost and implementation arguments. Each coalition used various resources and strategies to advance desired outcomes. PH coalition leaders were particularly effective at using resources and employing advocacy strategies, which included engaging state legislators as coalition members, using public opinion polls and information, and leveraging media resources to garner support. Policy precedence and a local policy push emerged as important policymaking strategies. Areas for future research on the state health policymaking process are discussed.
Asunto(s)
Defensa del Consumidor/psicología , Etiquetado de Alimentos/legislación & jurisprudencia , Federación para Atención de Salud/organización & administración , Formulación de Políticas , Restaurantes/legislación & jurisprudencia , California , Defensa del Consumidor/normas , Etiquetado de Alimentos/métodos , Etiquetado de Alimentos/normas , Política de Salud/legislación & jurisprudencia , Humanos , Salud Pública/legislación & jurisprudencia , Salud Pública/métodos , Investigación Cualitativa , Restaurantes/tendenciasRESUMEN
OBJECTIVE: Preliminary evidence suggests that elder abuse forensic centers improve victim welfare by increasing necessary prosecutions and conservatorships and reducing the recurrence of protective service referrals. Center team members gather information and make decisions designed to protect clients and their assets, yet the collective process of how these case reviews are conducted remains unexamined. The purpose of this study is to present a model describing the interprofessional approach of investigation and response to financial exploitation (FE), a frequent and complex type of abuse of vulnerable adults. METHODS: To develop an understanding of the case review process at the Los Angeles County Elder Abuse Forensic Center (Center), a quasi-Delphi field study approach was used involving direct observations of meetings, surveying team members, and review from the Center's Advisory Council. The goal of this iterative analysis was to understand the case review process for suspected FE in Los Angeles County. RESULTS: A process map of key forensic center elements was developed that may be useful for replication in other settings. The process map includes: (a) multidisciplinary data collection, (b) key decisions for consideration, and (c) strategic actions utilized by an interprofessional team focused on elder justice. DISCUSSION: Elder justice relies on a complex system of providers. Elder abuse forensic centers provide a process designed to efficiently address client safety, client welfare, and protection of assets. Study findings provide a process map that may help other communities replicate an established multidisciplinary team, one experienced with justice system outcomes designed to protect FE victims.
Asunto(s)
Abuso de Ancianos , Administración Financiera , Agencias Gubernamentales/organización & administración , Jurisprudencia , Anciano , Anciano de 80 o más Años , Técnica Delphi , Humanos , Los AngelesRESUMEN
Improvements in hemophilia care over the last several decades might lead to expectations of a near-normal quality of life for young adults with hemophilia. However, few published reports specifically examine health status indicators in this population. To remedy this knowledge gap, we examined the impact of hemophilia on physical and social functioning and quality of life among a national US cohort of 141 young men with hemophilia aged 18-34 years of age who received care at 10 geographically diverse, federally funded hemophilia treatment centers in 11 states between 2005 and 2013 and enrolled in the Hemophilia Utilization Group Studies. Indicators studied included educational achievement, employment status, insurance, health-related quality of life, and prevalence of the following comorbidities: pain, range of motion limitation, overweight/obesity, and viral status. The cohort was analyzed to compare those aged 18-24 to those aged 25-34 years. When compared to the general US adult population, this nationally representative cohort of young US adults with hemophilia experienced significant health and social burdens: more liver disease, joint damage, joint pain, and unemployment as well as lower high-school graduation rates. Nearly half were overweight or obese. Conversely, this cohort had higher levels of health insurance and equivalent mental health scores. While attention has typically focused on newborns, children, adolescents, and increasingly, on older persons with hemophilia, our findings suggest that a specific focus on young adults is warranted to determine the most effective interventions to improve health and functioning for this apparently vulnerable age group.