Assessment of Barriers to Referral and Appointment Wait Times for the Evaluation of Spinal Muscular Atrophy (SMA): Findings from a Web-Based Physician Survey.

BACKGROUND: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggest early diagnosis and treatment are critical. The purpose of this study was to evaluate neurology appointment wait times for newborn screening identified infants, pediatric cases mirroring SMA symptomatology, and cases in which SMA is suspected by the referring physician. Approaches for triaging and expediting referrals in the US were also explored. METHODS: Cure SMA surveyed healthcare professionals from two cohorts: (1) providers affiliated with SMA care centers and (2) other neurologists, pediatric neurologists, and neuromuscular specialists. Surveys were distributed directly and via Medscape Education, respectively, between July 9, 2020, and August 31, 2020. RESULTS: Three hundred five total responses were obtained (9% from SMA care centers and 91% from the general recruitment sample). Diagnostic journeys were shorter for infants eventually diagnosed with SMA Type 1 if they were referred to SMA care centers versus general sample practices. Appointment wait times for infants exhibiting "hypotonia and motor delays" were significantly shorter at SMA care centers compared to general recruitment practices (p = 0.004). Furthermore, infants with SMA identified through newborn screening were also more likely to be seen sooner if referred to a SMA care center versus a general recruitment site. Lastly, the majority of both cohorts triaged incoming referrals. The average wait time for infants presenting at SMA care centers with "hypotonia and motor delay" was significantly shorter when initial referrals were triaged using a set of "key emergency words" (p = 0.036). CONCLUSIONS: Infants directly referred to a SMA care center versus a general sample practice were more likely to experience shorter SMA diagnostic journeys and appointment wait times. Triage guidelines for referrals specific to "hypotonia and motor delay" including use of "key emergency words" may shorten wait times and support early diagnosis and treatment of SMA.

Telemedicine Use, Comfort, and Perceived Effectiveness in the Spinal Muscular Atrophy Community.

Background: Telemedicine may increase access to clinical care, particularly for mobility-limited communities such as the spinal muscular atrophy (SMA) community. However, much of the information on exposure to and attitudes toward telemedicine in neuromuscular diseases generally and SMA specifically is anecdotal or from focus groups. Gaining greater insight into patient perspectives is important, given telemedicine's potential for expanding access to care and growing use of telemedicine as a result of technology advances and the COVID-19 pandemic. Methods: Cure SMA collected information on the SMA community's exposure to, comfort with, and perceived effectiveness of telemedicine through its 2021 Community Update Survey. The final analytic sample represented 463 SMA-affected individuals, resident in the United States. Descriptive analyses, correlations, and ordered logit regression models were used to characterize the sample and identify predictors of exposure, comfort, and perceived effectiveness. Data were analyzed on weighted and unweighted bases to account for differences between the survey sample and the SMA community. Stratified analyses were used to compare self-completed surveys with caregiver-completed surveys. Results: 463 individuals answered questions about telemedicine. Approximately four-fifths of these respondents had used telemedicine previously. Factors predicting greater likelihood of prior telemedicine use included male gender, increasing income, having received drug treatment for SMA, history of mental illness, and having non-neutral views regarding comfort and perceived effectiveness of telemedicine. Several factors were also significant predictors of comfort with and perceived effectiveness of telemedicine. Stratified analyses indicated differences between self-completed and caregiver-completed surveys. Conclusion: These results can provide insight into patient experiences with telemedicine and can inform approaches to its use by health care professionals and clinical trial sponsors.

Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights.

OBJECTIVE: As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. INTRODUCTION: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. METHODS: Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19's effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. RESULTS: A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. CONCLUSIONS: This research evaluates the pandemic's interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities.

Clinical and Research Readiness for Spinal Muscular Atrophy: The Time Is Now for Knowledge Translation.

Disease-modifying therapies for spinal muscular atrophy (SMA) are rapidly changing the outlook for many individuals by substantially altering the clinical course, phenotypic expression, and functional outcomes. Physical therapists have played critical roles in the effective conduct and execution of clinical trials leading to the approval of these therapies. Given the treatment landscape, educating practicing clinicians to understand best practice is of great importance, and a timely call to action to facilitate knowledge translation from SMA researchers to clinicians is necessary. The SMA Clinical Trial Readiness Program engaged clinical and research centers, identified physical therapy knowledge gaps related to evaluation and outcomes assessment, and provided educational resources, including the development of a SMA Best Practices Clinical Evaluator Toolkit. Toolkit content synthesizes evidence and covers a breadth of issues relevant to practice, including background on SMA and the drug pipeline; therapist roles and responsibilities related to research; clinical and research evaluation; and useful materials and resources for additional education, training, and professional development. Surveys and telephone interviews were conducted with physical therapists managing individuals with SMA to determine their SMA practice experience and educational needs. Their recommendations, along with synthesized SMA research evidence, provided input into toolkit content development and assisted in identifying gaps important to address. Impact was assessed over time via utilization feedback surveys downloaded by clinicians across various settings. Open-ended feedback supported beneficial use of the toolkit for clinicians and researchers working with individuals with SMA. Next steps should include timely dissemination to bring this resource and others into practice in a systematic, efficacious, and engaging manner. As the treatment landscape for SMA evolves, the therapist's role in multidisciplinary care and research is of great importance, and a call to action for the development, implementation, evaluation and reporting of informed knowledge using evidence-based knowledge translation strategies is critical. IMPACT: Partnership among patient advocacy groups, industry collaborators, and key opinion leaders/experts can optimize essential resource development to address the knowledge gap for best practices in physical therapy. This partnership model can be replicated for other diseases, providing an efficient way to support clinical trial readiness and target early development of evidence-based content and resources related to both research and best practice clinical evaluation for physical therapist researchers, clinicians, and patients. While identifying knowledge gaps and resource development are initial steps toward change in SMA practice, a rapidly changing rehabilitation outlook warrants a call to action for enhanced efforts aimed at improving rehabilitation evaluation, assessment, and care for this population. It is critical to forge a timely path forward for development, implementation, and sustainability of effective knowledge translation to practice for SMA.

The Cure SMA Clinical Trial Experience Survey: A Study of Trial Participant Perspectives on Clinical Trial Management and Patient-Centric Management Practices.

INTRODUCTION: Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for recruitment and retention. This study sought to better understand clinical trial participant experiences and attitudes within spinal muscular atrophy (SMA), and how the evolving treatment landscape and participant characteristics may predict attitudes. METHODS: A survey was developed following a review of published literature and discussions with caregivers of SMA trial participants. This was distributed via email to known trial participants in Cure SMA's database, announcements in Cure SMA's newsletter, and emails to SMA clinical trial principal investigators. RESULTS: Seventy complete surveys reflecting unique clinical trial experiences were included in analysis. Responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. In regression analysis, participant gender, age, and race all emerged as significant predictors (p < 0.05) of motivators, concerns, stressors, and benefits, as did respondent type, knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. CONCLUSION: This research provides new perspective on patient experiences in SMA clinical trials. It underscores the importance of information and efforts to anticipate and accommodate participant needs. These findings may inform study design and interactions with research participants. They may become especially important in supporting recruitment and retention as more treatment options become available.

Clinical trials can be stressful experiences for patients and their caregivers, especially when participants are affected by serious diseases. By understanding trial participants' attitudes and experiences, researchers may be better able to accommodate their interests when designing and conducting research studies. This study sought insight into attitudes and experiences of spinal muscular atrophy (SMA) clinical trial participants by surveying people who participated in SMA clinical trials in the USA. The data used in analysis reflected 70 unique clinical trial experiences. Survey responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. Whether or not specific motivators, concerns, stressors, and benefits were important was predicted by participant gender, age, and race, as well as respondent type (participant or caregiver), knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. This research provides new perspective on patient experiences in SMA clinical trials, and may be used to inform future study design and interactions with research participants.

Assessing perspectives of disease burden and clinically meaningful changes using the Spinal Muscular Atrophy Health Index in adolescents and young adults.

INTRODUCTION/AIMS: Spinal muscular atrophy (SMA) treatment may increase survival and improve physical function among adolescents and young adults. Validated patient-reported outcome measures are needed to understand which treatment benefits are clinically meaningful and to develop targeted resources for this population. To date, use of the SMA Health Index (SMA-HI) in pediatric and young adult populations has been limited. Here, we report results from a survey of adolescents and young adults with SMA to quantifiably understand individuals' perceptions of disease burden. METHODS: Participants aged 12-25 y with a self-reported diagnosis of SMA completed an online survey containing demographic questions and the SMA-HI, a patient-reported outcome measure that assesses individuals' perceptions of disease burden in 15 symptomatic areas. RESULTS: Eighty-eight participants completed the survey. Total SMA-HI scores and SMA-HI subscale scores including shoulder and arm function; back, chest, and abdominal function; activity participation; hand and finger strength; swallowing function; gastrointestinal function; respiratory function; mobility and ambulation, and total disease burden were significantly higher (greater disease burden) in patients with poorer motor function and severe SMA. SMA-HI total and subscale scores were generally lower in adolescents (12-17 y old) versus adults (18-25 y old), suggesting a possible progression of symptomatic disease burden over time. DISCUSSION: This study demonstrates the utility of the SMA-HI for measuring clinically relevant disease burden in adolescents and young adults with SMA. This study demonstrates how disease burden varies by age, SMA type, and other demographics.

Awareness screening and referral patterns among pediatricians in the United States related to early clinical features of spinal muscular atrophy (SMA).

BACKGROUND: Spinal Muscular Atrophy (SMA), a leading genetic cause of death in infants, is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. While early diagnosis of SMA is critical to modifying disease progression and improving outcomes, serious diagnostic delays persist. There is a need to improve SMA awareness, screening, and referral patterns. METHODS: Two online surveys, developed by Cure SMA for general pediatricians, were distributed by Medscape Education via email (September 2018, n = 300, December 2019, n = 600). The surveys asked about adherence to the American Academy of Pediatrics (AAP) developmental screening and surveillance guidelines, comfort with identification of early signs of neuromuscular disease (NMD), familiarity with SMA, and barriers to timely referral. RESULTS: In 2018, 70.3% of survey respondents indicated comfort in identifying early signs of NMD and 67.3% noted familiarity with SMA. 52.7% correctly indicated the need for genetic testing to make a definitive diagnosis of SMA, 74.0% meet or exceed developmental screening recommendations, and 52.0% said they would immediately refer to a specialist. In 2019, with a larger sample, 73.0% adhere to developmental screening guidelines, and awareness of the genetic testing requirement for SMA was significantly lower by 7.7% (p < 0.03). Specialist wait times emerged as a barrier to referral, with 64.2% of respondents citing wait times of 1-6 months. CONCLUSIONS: Many pediatricians underutilize developmental screening tools and lack familiarity with diagnostic requirements for SMA. Continuing efforts to expand awareness and remove barriers to timely referral to SMA specialists, including reducing appointment wait times, are needed.

"I have SMA, SMA doesn't have me": a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA.

BACKGROUND: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. RESULTS: Eighty-five individuals-6 type Is, 58 type IIs, and 21 type IIIs-completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a variety of challenges, including but not limited to forming or maintaining close relationships, experiencing feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, notably in the survey, 39% of respondents requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. CONCLUSION: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.

Acidotoxicity via ASIC1a Mediates Cell Death during Oxygen Glucose Deprivation and Abolishes Excitotoxicity.

Ischemic reperfusion (I/R) injury is associated with a complex and multifactorial cascade of events involving excitotoxicity, acidotoxicity, and ionic imbalance. While it is known that acidosis occurs concomitantly with glutamate-mediated excitotoxicity during brain ischemia, it remains elusive how acidosis-mediated acidotoxicity interacts with glutamate-mediated excitotoxicity. Here, we investigated the effect of acidosis on glutamate-mediated excitotoxicity in acute hippocampal slices. We tested the hypothesis that mild acidosis protects against I/R injury via modulation of NMDAR, but produces injury via activation of acid sensing ion channels (ASIC1a). Using a novel microperfusion approach, we monitored time course of injury in acutely prepared, adult hippocampal slices. We varied the duration of insult to delay the return to preinsult conditions to determine if injury was caused by the primary insult or by the modeled reperfusion phase. We also manipulated pH in presence and absence of oxygen glucose deprivation (OGD). The role of ASIC1a and NMDAR was deciphered by treating the slices with and without an ASIC or NMDAR antagonist. Our results show that injury due to OGD or low pH occurs during the insult rather than the modeled reperfusion phase. Injury mediated by low pH or low pH OGD requires ASIC1a and is independent of NMDAR activation. These findings point to ASIC1a as a mediator of ischemic cell death caused by stroke and cardiac arrest.

Maternal stress exposures, reactions, and priorities for stress reduction among low-income, urban women.

INTRODUCTION: Maternal psychosocial stress has been associated with adverse maternal-child outcomes. Vulnerable women's experiences with stressors during pregnancy and their desires and priorities for appropriate and useful stress reduction interventions are not well understood. METHODS: Qualitative interviews with low-income, urban women explored their stress exposures and reactions during pregnancy, ways that stressors overlapped and interacted, and their priorities for stress reduction. Quantitative measures (Perceived Stress Scale; My Exposure to Violence Instrument Danger Assessment; Center for Epidemiologic Studies of Depression Scale, Revised; and Posttraumatic Stress Disorder Checklist-Civilian) supplemented qualitative descriptions of women's stress exposures and reactions. Analyses explored relationships between stressors and women's priorities for stress intervention. Lay advisors from the sample population reviewed qualitative interview guides for appropriateness, completeness, and language prior to interviews and reviewed study findings for validity. Study findings were returned to the community in newsletter form. RESULTS: Twenty-four low-income, urban women participated in interviews. Women in the sample reported high stress, lifetime violence exposure, depression, and posttraumatic stress disorder symptoms. The most common stressors reported were financial strain, violence exposure, and feelings of intense isolation and loneliness. Few participants reported having discussed psychosocial stressors with prenatal care providers. Participants in this study described connections with other women as desirable to relieve their stress and provided input on ways health care providers could facilitate such connections. DISCUSSION: Clinical and research implications of findings are discussed, including approaches that health care providers may find useful to facilitate connections among vulnerable pregnant women.

Prevalence of interpersonal violence against community-living adults with disabilities: a literature review.

OBJECTIVE: To review the empirical literature on the prevalence of interpersonal violence (IPV) against people with disabilities. METHOD: The authors searched for, obtained, and reviewed 6,000 abstracts published between January, 2000 and August, 2010 via searches in PsycINFO and PubMed. Subsequently, 177 potentially applicable full-text articles were independently assessed for inclusion; 22 articles describing 21 individual studies were included in this review. RESULTS: The prevalence of IPV varied depending on the time frame, the definition and type of violence, perpetrator, and disability. Prevalence of any type of IPV among women with disabilities ranged from 26.0%-90.0% for lifetime; 4.9%-29.1% for the past 5 years; and 2.0%-70.0% for the past year. In some studies, when compared to women without disabilities, women with disabilities experienced more lifetime, 5 year, and past year physical and sexual IPV. Prevalence of any IPV in men with disabilities ranged from 28.7%-86.7% for lifetime; 24.9% for the past 5 years; and 36.7% for the past year. CONCLUSIONS/IMPLICATIONS: IPV occurs at elevated and disproportionate rates among women and men with disabilities, especially when assessed over the course of their lives. Future research that relies on standard definitions of disability and violence, uses accessible measurement, and examines IPV in diverse populations of people with disabilities will strengthen future reviews and better inform research and policy priorities on disability and violence.

Facilitators and barriers to disclosing abuse among women with disabilities.

An anonymous audio computer-assisted self-interview (A-CASI) designed to increase awareness of abuse was completed by 305 women with diverse disabilities. Data were also collected about lifetime and past year abuse; perpetrator risk characteristics; facilitators and barriers to disclosing abuse; abuse disclosure to a health provider, case manager, or police officer; and whether a health provider had ever discussed abuse or personal safety. A total of 276 (90%) women reported abuse, 208 (68%) reported abuse within the past year. Women who reported the most abuse experiences in the past year and the most dangerous perpetrators endorsed fewer facilitators and more barriers, but were also more likely to have ever disclosed abuse. Only 15% reported that a health provider had ever discussed abuse and personal safety.

Efficacy of a computerized abuse and safety assessment intervention for women with disabilities: a randomized controlled trial.

OBJECTIVE: To evaluate the effects of a computerized disability-specific abuse assessment intervention on abuse awareness, safety self-efficacy, and safety promoting behaviors of women with diverse disabilities. RESEARCH DESIGN: A randomized control group design was used, with the intervention group completing the assessment intervention both at Time 1 (T1) and 3 months later at Time 2 (T2) and control participants completing it for the first time at T2. Analyses compared intervention and control groups at T2 and evaluated change over time in intervention group participants. The relationship between outcome variables (abuse awareness, safety self-efficacy, safety behaviors) was also explored. RESULTS: The intervention group had greater abuse awareness than the control group at T2, and abuse awareness increased from T1 to T2 among women in the intervention group, particularly among women who had experienced little or no abuse in the past year. Both abuse awareness and safety self-efficacy were significantly related to safety behaviors. CONCLUSIONS: The computerized program offers promise as a nonthreatening method of conducting abuse assessments among women with disabilities while also serving as an intervention to enhance abuse awareness.

Experiences of mistreatment among women with cerebral palsy.

Abuse and mistreatment of women with disabilities is a complex problem that affects their health and well-being. Previous studies have focused on heterogeneous groups of women with disabilities, with only small numbers of women with cerebral palsy included, but different disabilities may play specific roles in relation to abuse. Exploring mistreatment of women with cerebral palsy is important in determining the relationship between mistreatment and a specific disability. The aim of this article was to describe experiences and meanings of mistreatment among women with cerebral palsy. The feminist biographical method was used to provide an in-depth exploration of women's storied lives, uncover the meaning of women's lives from their own perspective, and provide understanding of women whose stories are seldom told. A sample of eight participants participated in two in-depth, audio-recorded interviews. Two major themes and five subthemes emerged. The meaning of mistreatment included participants' definition of mistreatment and their explanation for mistreatment. Outcomes of mistreatment were divided into emotional, social, and physical outcomes. Health care providers need to understand the meaning and outcomes of mistreatment in their patients' lives to begin to address mistreatment, listen to patients, advocate when needed, and provide appropriate health care.

Development of measures of abuse among women with disabilities and the characteristics of their perpetrators.

Three hundred and five women with diverse disabilities completed an anonymous audio computer-assisted self-interview designed to increase women's awareness of abuse. Data were also collected regarding abuse experienced in the past year and the risk characteristics of their perpetrators. Overall, 68% reported some type of abuse. Preliminary evidence for the validity and reliability of questions to assess abuse and perpetrator risk characteristics was found. Latent class analysis revealed four distinct classes of abuse experiences: sexual abuse, physical abuse, multiple forms of abuse, and minimal abuse and three classes of perpetrator risk characteristics: controlling characteristics, noncontrolling characteristics, and minimal risk characteristics.

Interpersonal violence and women with disabilities: analysis of safety promoting behaviors.

Very little information exists related to the interpersonal violence safety promoting behaviors of women with disabilities. Information about women's use of safety promoting behaviors was gathered from 305 disabled and deaf women who completed an anonymous Audio Computer-Assisted Self-Interview. Exploratory factor analyses revealed factors related to seeking abuse-related safety information, building abuse-related safety promoting skills, using relationship support, planning for emergencies, taking legal action, and managing safety in personal assistance relationships. Four of these factors demonstrated significant relationships to women's experience of different forms of abuse and their perpetrator's characteristics.

Development of an accessible Audio Computer-Assisted Self-Interview (A-CASI) to screen for abuse and provide safety strategies for women with disabilities.

To increase safety and minimize the risk of interpersonal violence, it is critical that women with disabilities and Deaf women have an opportunity to identify whether or not abuse is happening in their lives. Awareness and knowledge of what constitutes abusive behaviors is an essential first step in addressing interpersonal violence. This article includes a description of the development and evaluation of the Safer and Stronger Program (SSP), an audio computer-assisted self-interview program, which was created for women with disabilities and Deaf women for the purposes of increasing awareness of abuse, encouraging safety-planning behaviors, and providing information about community resources.

Abuse and psychosocial stress as factors in high utilization of medical services during pregnancy.

High utilization of medical services during pregnancy has not been described as most studies have focused on women who receive inadequate or no prenatal care. This paper describes the characteristics and medical utilization data of 500 pregnant women enrolled in a prospective study. High utilizers (HU), who had a mean of 7.8 utilizations (SD = 3.2), were significantly more likely to be nonwhite, low income, and younger than low utilizers (LU) who had a mean of 0.99 utilizations (SD = 1.1). HU reported a 32% rate of recent abuse compared to 9% for LU. HU also reported significantly more stress, lower self-esteem, and more ambivalence about the pregnancy. Consistent with their higher utilization, they were more likely to be diagnosed with preterm labor, hyperemesis, and gestational diabetes. HU had a higher proportion of complaints of nausea, vomiting, diarrhea, and pain and more mental health diagnoses than LU. Overall, HU were a vulnerable group characterized by recent abuse, economic disadvantage, psychosocial stress, and mental health issues. Their high utilization of medical services may have been due in large part to unmet psychosocial needs.

Abuse disclosure in privately and medicaid-funded pregnant women.

Disclosure of abuse by pregnant women can vary depending on whether the woman is assessed directly by a trained interviewer versus written questionnaires, and if she is asked repeatedly during the course of pregnancy. One thousand pregnant women were enrolled in a randomized clinical trial designed to assess the effects of a nursing case management intervention on the mental and physical well-being of pregnant women experiencing or at risk for abuse. Thirteen percent of the total study participants reported current abuse and/or abuse within the past year, with only 2% of those reporting that the abuse occurred during pregnancy. The incidence of reported abuse was much higher among Medicaid-funded women (28.9%) than privately insured women (8.7%). Regardless of source of payment, women reporting abuse were significantly younger, less educated, nonwhite with lower income, and had significantly higher stress and lower self-esteem than women not reporting abuse. A high incidence of women reporting intimate partner violence described being choked on the Danger Assessment Screen (34%). We strongly urge that choking be added to routine screening questions used during pregnancy and that the Danger Assessment tool is used for further evaluation of women who screen positive. In addition, we believe another barrier to reporting abuse was fear of being reported to child protective services, contributing to the overall low rate of abuse disclosure.

Abuse during pregnancy: current theory and new contextual understandings.

This study used Landenburger's theory, a process of leaving and recovering from an abusive relationship, as a framework to interview 35 pregnant women identified as being at high risk for abuse. Results are reported on 18 women who disclosed active abuse during the study. Landenburger's model was not a good fit. Our participants became trapped and endured violent relationships if they perceived this was the best situation for their unborn child. Additionally the chaos, instability, and lack of resources experienced by these women likely contributed to their inability to complete the four phases described by Landenburger's model for non-pregnant women.