Costs and impact of disease in adults with sickle cell disease: a pilot study.

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.

Test-retest reliability of a mobile application of the patient reported outcomes burdens and experiences (PROBE) study.

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.

Real-World Dispensing of Buprenorphine in California during Prepandemic and Pandemic Periods.

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.

What quantifies good primary care in the United States? A review of algorithms and metrics using real-world data.

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.

Trends in prescribing practices for management of haemophilia: 1999-2021.

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.

Depression and anxiety in persons with Von Willebrand disease.

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.

Temporal trend of opioid and nonopioid pain medications: results from a national in-home survey, 2001 to 2018.

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.

Comorbidities, Health-Related Quality of Life, Health-care Utilization in Older Persons with Hemophilia-Hematology Utilization Group Study Part VII (HUGS VII).

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.

Evaluation of the sexual health in people living with hemophilia.

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.

Non-severe haemophilia: Is it benign? - Insights from the PROBE study.

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.

Descriptive analysis of real-world medication use pattern of statins and antiplatelet agents among patients with acute coronary syndrome in Hong Kong and the USA.

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.

Exploring regional variations in the cross-cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study.

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).

Test-retest properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire and its constituent domains.

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.

Psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.

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.

Real-world study of low-density lipoprotein cholesterol levels and cardiovascular outcomes in Chinese: A retrospective cohort study in post-percutaneous coronary intervention acute coronary syndrome patients.

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).

Economic Burden of Illness among Persons with Hemophilia B from HUGS Vb: Examining the Association of Severity and Treatment Regimens with Costs and Annual Bleed Rates.

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.

Advocacy coalitions involved in California's menu labeling policy debate: Exploring coalition structure, policy beliefs, resources, and strategies.

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.

Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status.

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.

Administration and Burden of Subcutaneous Immunotherapy for Allergic Rhinitis in U.S. and Canadian Clinical Practice.

Background: Allergy immunotherapy (AIT) is the only available treatment that alters the natural course of allergies and has possible disease-modifying effects. AIT is administered primarily via subcutaneous injection delivered in a physician's office. Few studies have been conducted in the United States or Canada to evaluate the costs of subcutaneous immunotherapy (SCIT).

Inside the Black Box: The Case Review Process of an Elder Abuse Forensic Center.

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.

Burden of illness: direct and indirect costs among persons with hemophilia A in the United States.

Objective: To examine the direct and indirect costs of hemophilia care among persons with hemophilia A in the US.

Methods: Observational data were obtained from HUGS-Va, a multi-center study from six federally supported hemophilia treatment centers (HTCs). Eligible individuals completed a standardized initial questionnaire and were followed regularly for 2 years to obtain information on work or school absenteeism, time spent arranging hemophilia care, and unpaid hemophilia-related support from caregivers.

Impact of mental health comorbidities on health care utilization and expenditure in a large US managed care adult population with ADHD.

Objective: To estimate the health resource use (HRU) and expenditure of adult patients with attention deficit/hyperactivity disorder (ADHD) subsequently diagnosed with one or more mental health (MH) comorbidities.

Methods: Using Kaiser Permanente Southern California electronic medical records (January 1, 2006, to December 31, 2009), we identified adults with at least one ADHD diagnosis and at least two subsequent prescriptions fills for ADHD medication. The date of first MH comorbidity diagnosis after the index ADHD diagnosis was defined as the index transition date.

Longitudinal changes in health-related quality of life for chronic diseases: an example in hemophilia A.

Background: Patients with well-managed rare chronic diseases such as hemophilia maintain a stable health state and health-related quality of life (HrQoL) that may be affected by acute events. Longitudinal HrQoL assessments analyzed using multivariate multilevel (MVML) modelling can determine the impact of such events on individuals (within-person effect) and identify factors influencing within-population differences (between-person effect).

Objectives: To demonstrate the application of MVML modelling in a longitudinal study of HrQoL in hemophilia A.

Prevalence and incidence of adult attention deficit/hyperactivity disorder in a large managed care population.

Objectives: To estimate longitudinal trends in prevalence and incidence rates of adult ADHD 2006-2009.

Research Design And Methods: Kaiser Permanente Southern California (KPSC) electronic medical records were analyzed to assess prevalence and incidence rates for adult ADHD. Trends over time were estimated and compared using three case definitions (ADHD diagnosis only [DX], ADHD DX and ≥2 FDA-approved ADHD prescriptions [DX + RX], and ADHD DX and ≥1 behavioral therapy visit [DX + BT]).

Multiple medication adherence and its effect on clinical outcomes among patients with comorbid type 2 diabetes and hypertension.

Objective: To investigate multiple medication adherence (MMA) and its impact on microvascular and macrovascular complications using instrumental variables (IVs).

Research Design: A retrospective observational study was conducted using administrative claims and electronic medical records from a large physician group in Southern California (N=2334).

Subjects: We identified individuals between January 2006 and June 2009 newly starting oral diabetes (DM) or hypertension (HTN) medications with preexisting comorbid HTN or DM prescription history.