Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies.

INTRODUCTION/AIMS: Duchenne and Becker muscular dystrophies (DBMD) are X-linked neuromuscular disorders characterized by progressive muscle weakness, leading to decreased mobility and multisystem complications. We estimate productivity costs attributable to time spent by a parent caring for a male child under the age of 18 y with DBMD, with particular focus on female caregivers of boys with Duchenne muscular dystrophy (DMD) who have already lost ambulation. METHODS: Primary caregivers of males with DBMD in the Muscular Dystrophy Surveillance and Research Tracking Network (MD STARnet) were surveyed during 2011-2012 on family quality of life measures, including labor market outcomes. Of 211 respondents, 96 female caregivers of boys with DBMD were matched on state, year of survey, respondent's age, child's age, and number of minor children with controls constructed from Current Population Survey extracts. Regression analysis was used to estimate labor market outcomes and productivity costs. RESULTS: Caregivers of boys with DBMD worked 296 h less per year on average than caregivers of unaffected children, translating to a $8816 earnings loss in 2020 U.S. dollars. Caregivers of boys with DMD with ≥4 y of ambulation loss had a predicted loss in annualized earnings of $23,995, whereas caregivers of boys with DBMD of the same ages who remained ambulatory had no loss of earnings. DISCUSSION: Female caregivers of non-ambulatory boys with DMD face additional household budget constraints through income loss. Failure to include informal care costs in economic studies could understate the societal cost-effectiveness of strategies for managing DMD that might prolong ambulation.

Intimate Partner Violence: Barriers to Action and Opportunities for Intervention Among Health Care Providers in São Paulo, Brazil.

Health care providers (HCPs) who directly interact with women play a critical role in intimate partner violence (IPV) prevention and response. The aim of this study was to identify the structural and interpersonal barriers to IPV response among HCPs working in public health clinics in Santo André, Brazil. Eligible participants included all HCPs providing direct care to individuals at three public health clinics. Participants self-administered an adapted Knowledge, Attitudes, and Practices survey on IPV. Data were analyzed using Epi Info 7 and SAS 9.4. 114 HCPs completed surveys. Less than half of HCPs (41%, n = 34) reported ever having asked a woman about abuse in the past year. HCPs who perceived fewer barriers were more likely to report asking about IPV. The top three reported barriers to asking women about IPV included the following: few opportunities for one-on-one interaction (77%, n = 65), a lack of privacy (71%, n = 60), and fear of offending women (71%, n = 60). Fewer providers who perceived the barriers of lack of privacy asked about IPV (50.8%, n = 33 compared with 84.2%, n = 16; p < .05); less providers who perceived few opportunities for private patient interactions asked about IPV (48.3%, n = 29 compared with 75.0%, n = 18; p < .05). Our results support the need for a systems approach of institution-wide reforms altering the health care environment and avoiding missed opportunities in IPV screening and referring women to appropriate resources or care. Two of the most frequently reported barriers to asking IPV were structural in nature, pointing to the need for policies that protect privacy and confidentiality. Within the Brazilian context, our research highlights the role of HCPs in the design and implementation of IPV interventions that both strengthen health systems and enable providers to address IPV.

The Validity and Reliability of Available Intimate Partner Homicide and Reassault Risk Assessment Tools: A Systematic Review.

At least one in seven homicides around the world is perpetrated by intimate partners. The danger of intimate partner homicide (IPH) associated with intimate partner violence (IPV) has led to the development of numerous IPV reassault and IPH risk assessment tools. Using 18 electronic databases and research repositories, we conducted a systematic review of IPH or IPV reassault risk assessment instruments. After review, 43 studies reported in 42 articles met inclusion criteria. We systematically extracted, analyzed, and synthesized data on tools studied, sample details, data collection location, study design, analysis methods, validity, reliability, and feasibility of use. Findings indicate that researchers in eight countries have tested 18 distinct IPH or IPV reassault risk assessment tools. The tools are designed for various professionals including law enforcement, first responders, and social workers. Twenty-six studies focused on assessing the risk of male perpetrators, although eight included female perpetrators. Eighteen studies tested tools with people in mixed-sex relationships, though many studies did not explicitly report the gender of both the perpetrators and victims/survivors. The majority of studies were administered or coded by researchers rather than administered in real-world settings. Reliable and valid instruments that accurately and feasibly assess the risk of IPH and IPV reassault in community settings are necessary for improving public safety and reducing violent deaths. Although researchers have developed several instruments assessing different risk factors, systematic research on the feasibility of using these instruments in practice settings is lacking.

A Review of MD STAR net's Research Contributions to Pediatric-Onset Dystrophinopathy in the United States; 2002-2017.

Population studies of rare disorders, such as Duchenne and Becker muscular dystrophies (dystrophinopathies), are challenging due to diagnostic delay and heterogeneity in disorder milestones. To address these challenges, the Centers for Disease Control and Prevention established the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STAR net) in 2002 in the United States. From 2002 to 2012, MD STAR net longitudinally tracked the prevalence, clinical, and health care outcomes of 1054 individuals born from 1982 to 2011 with pediatric-onset dystrophinopathy through medical record abstraction and survey data collection. This article summarizes 31 MD STAR net peer-reviewed publications. MD STAR net provided the first population-based prevalence estimates of childhood-onset dystrophinopathy in the United States. Additional publications provided insights into diagnostic delay, dystrophinopathy-specific growth charts, and health services use. Ongoing population-based surveillance continually improves our understanding of clinical and diagnostic outcomes of rare disorders.

Improving surveillance for the hidden half of fetal-infant mortality: a pilot study of the expansion of the Pregnancy Risk Assessment Monitoring System to include stillbirth.

PURPOSE: In the United States, stillbirths (fetal deaths ≥ 20 weeks' gestation) are now more common than infant deaths. Nationally available data are limited, and little is known about women's experiences around the time of a loss. The Pregnancy Risk Assessment Monitoring System (PRAMS), a state-based survey of women with a recent live birth, could be expanded to include women who experienced a stillbirth. We aimed to determine whether women with a recent stillbirth would be amenable to a PRAMS-like survey. METHODS: Eligible women were Georgia residents aged ≥18 years with a reported stillbirth from December 1, 2012-February 28, 2013 identified through fetal death certificates. Women received a handwritten sympathy card, followed by a mailed questionnaire about their health and experiences around the time of the loss. Nonresponders received two additional mailings and up to three phone calls. RESULTS: During the study period, 149 eligible women had a reported stillbirth. Forty-nine (33%) women responded. Excluding women with invalid contact information (n = 26) yields an adjusted response rate of 40%. Response differed by race and/or ethnicity, but not by fetal, delivery, or other maternal characteristics. CONCLUSIONS: Women appear willing to respond to a survey regarding a recent stillbirth. Further studies of the expansion of PRAMS to include stillbirth are warranted.