Search

Although it has been more than 30 years since enactment of the Americans with Disabilities Act, people with disabilities continue to face physical access barriers, notably inaccessible medical diagnostic equipment, in clinical settings. Access barriers affect breast cancer screening and treatment for women with disabilities. We used standard diagnosis codes and natural language processing to screen electronic health records (EHRs) in a digital data repository from a large health care delivery system for patients with a pre-existing mobility disability who had been diagnosed with breast cancer between 2005 and 2017. We reviewed EHRs of 20 patients, using conventional content analysis to examine breast cancer diagnosis and treatment experiences. Clinicians noted challenges positioning patients for routine procedures, including manual breast exam, screening mammography, and breast biopsies. Given challenges accommodating disability for adjuvant therapies, mastectomy was favored over breast-conserving options despite early stages of diagnosis. Notations contained little information about proactive problem-solving for arranging accommodations. Notations described physical access barriers for breast cancer detection and treatment, with limited planning for mitigating barriers. Despite 2017 promulgation of federal Standards for Accessible Medical Diagnostic Equipment, implementing these standards requires further rulemaking.

More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians' perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians' perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.

PURPOSE: Approximately 13% of the US population report mobility disability. People with mobility disability experience healthcare disparities, including lower rates of cancer screening and substandard cancer care compared with nondisabled people. We explored clinicians' reports of aspects of diagnosing and treating three common cancer types among persons with pre-existing mobility disability. METHODS: We used standard diagnosis codes and natural language processing to screen electronic health records (EHR) in the Research Patient Data Repository for patients with pre-existing chronic mobility impairment who were newly diagnosed with one of three common cancers (colorectal, prostate, and non-Hodgkin lymphoma) between 2005 and 2017. We eliminated numerous cases whose EHRs lacked essential information. We reviewed EHRs of 27 cases, using conventional content analysis to identify themes concerning their cancer diagnoses and treatments. RESULTS: Clinicians' notations coalesced around four major themes: (1) patients' health risks raise concerns about diagnostic processes; (2) cancer signs or symptoms can be erroneously attributed to the patient's underlying disabling condition, delaying diagnosis; (3) disability complicates cancer treatment decisions; and (4) problems with equipment accessibility and disability accommodations impede cancer diagnoses. DISCUSSION: Clinicians view patients with pre-existing mobility disability as often clinically complex, presenting challenges for diagnosing and treating their cancer. Nonetheless, these patients may experience substandard care because of disability-related problems. Given the growing population of people with mobility disability, further efforts to improve care quality and timeliness of diagnosis are warranted.

Objective To assess the utility of applying natural language processing (NLP) to electronic health records (EHRs) to identify individuals with chronic mobility disability. Design We used EHRs from the Research Patient Data Repository, which contains EHRs from a large Massachusetts health care delivery system. This analysis was part of a larger study assessing the effects of disability on diagnosis of colorectal cancer. We applied NLP text extraction software to longitudinal EHRs of colorectal cancer patients to identify persons who use a wheelchair (our indicator of mobility disability for this analysis). We manually reviewed the clinical notes identified by NLP using directed content analysis to identify true cases using wheelchairs, duration or chronicity of use, and documentation quality. Setting EHRs from large health care delivery system Participants Patients (N=14,877) 21-75 years old who were newly diagnosed with colorectal cancer between 2005 and 2017. Interventions Not applicable. Main Outcome Measures Confirmation of patients’ chronic wheelchair use in NLP-flagged notes; quality of disability documentation. Results We identified 14,877 patients with colorectal cancer with 303,182 associated clinical notes. NLP screening identified 1482 (0.5%) notes that contained 1+ wheelchair-associated keyword. These notes were associated with 420 patients (2.8% of colorectal cancer population). Of the 1482 notes, 286 (19.3%, representing 105 patients, 0.7% of the total) contained documentation of reason for wheelchair use and duration. Directed content analysis identified 3 themes concerning disability documentation: (1) wheelchair keywords used in specific EHR contexts; (2) reason for wheelchair not clearly stated; and (3) duration of wheelchair use not consistently documented. Conclusions NLP offers an option to screen for patients with chronic mobility disability in much less time than required by manual chart review. Nonetheless, manual chart review must confirm that flagged patients have chronic mobility disability (are not false positives). Notes, however, often have inadequate disability documentation.

Note: This statement is mandatory. Please provide.

BACKGROUND: Women with intellectual disability experience disparities in sexual and reproductive health care services. METHODS: To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practicing physicians and three video-based focus group interviews with an additional 22 practicing physicians, which reached data saturation. Interviews were transcribed verbatim. We used conventional content analysis methods to analyse transcripts. RESULT: Physicians indicated that intellectual disability can pose challenges to providing sexual and reproductive health care. Observations coalesced around four themes: (1) communication; (2) routine preventive care; (3) contraception and sterilization; and (4) conception and parenthood. Observations raised concerns about equity of access to reproductive care for women with intellectual disability. CONCLUSIONS: In our sample of physicians, we found attitudes that might compromise reproductive care for women with intellectual disability, suggesting that gaps remain in ensuring reproductive rights of women with intellectual disability.

Importance Despite documented disparities in health care for patients with significant vision impairments and legal mandates that patients with disability receive equitable care, little is known about the extent to which physicians practicing in the US accommodate these patients in outpatient clinical settings. Objective To empirically explore the extent of basic accommodations physicians practicing in the US provide to patients with significant vision limitations in outpatient care. Design, Setting, and Participants In this physician survey study, randomly selected physicians were surveyed throughout the US on their attitudes toward patients with disability. A total of 1400 randomly selected active board-certified physicians representing 7 specialties (family medicine, general internal medicine, rheumatology, neurology, ophthalmology, orthopedic surgery, and obstetrics-gynecology) were surveyed. Data were collected from October 2019 to June 2020. Main Outcomes and Measures Reported use of basic accommodations when caring for patients with significant vision limitations (defined here as blind or significant difficulty seeing even with glasses or other corrective lenses). Physicians’ accommodation performance was assessed based on whether they always or usually described the clinic space and always or usually provided printed material in large font. Use of Braille materials was reported too rarely to include in analyses. Results Of the 462 survey participants, 297 of 457 (65.0%) were male. The weighted response rate was 61.0%. Only 48 physicians (9.1%; 95% CI, 6.6-12.3) provided both accommodations (always or usually describing clinic spaces and providing large-font materials), while 267 (60.2%; 95% CI, 55.3-65.0) provided neither of these accommodations. Although 62.8% (95% CI, 57.5-67.8; n = 245) of nonophthalmologists did not provide either accommodation, 29.3% (95% CI, 20.1-40.7; n = 22) of ophthalmologists also did not do so; only 24.0% (95% CI, 15.6-35.0; n = 18) of ophthalmologists provided both accommodations compared with 8.4% (95% CI, 5.4-12.7) of other physicians. Conclusions and Relevance This survey study suggests that less than one-tenth of physicians practicing in the US who care for patients with significant vision limitations usually or always describe clinic spaces or provide large-font materials, and less than one-third of ophthalmologists do so. Actions to address this seem warranted.

Objective To explore attitudes and practices of physicians relating to accessible medical diagnostic equipment in serving patients with mobility disability. Design Open-ended individual telephone interviews, which reached data saturation. Interview recordings were transcribed verbatim for qualitative conventional content analysis. Setting Massachusetts, the United States, October 2017-January 2018. Participants Practicing physicians from 5 clinical specialties (N=20). Interventions Not applicable. Main Outcome Measures Common themes concerning physical accessibility. Results Mean ± SD time in practice was 27.5±12.5 years; 14 practices had height-adjustable examination tables; and 7 had wheelchair-accessible weight scales. The analysis identified 6 broad themes: height-adjustable examination tables have advantages; height-adjustable examination tables have drawbacks; transferring patients onto examination tables is challenging; rationale for examining patients in their wheelchairs; perceptions of wheelchair-accessible weight scales; and barriers and facilitators to improving physical accessibility. Major barriers identified by participants included costs of equipment, limited space, and inadequate payment for extra time required to care for persons with disability. Even physicians with accessible examination tables sometimes examined patients seated in their wheelchairs. Conclusions Even if physicians have accessible equipment, they do not always use it in examining patients with disability. Future efforts will need to consider ways to eliminate these access barriers in clinical practice. Given small sample size, results are not generalizable to physicians nationwide and globally.

Background Many factors contribute to the well-recognized health care disparities experienced by persons with disability, including failure of physicians to understand the lives of individuals with disability. Disability cultural competence considers physicians’ ability to meet the social, cultural, and linguistic needs of this population. Objectives To assess physicians’ understanding of disability cultural competence and attitudes towards patients with disability. Methods Qualitative analyses of open-ended individual interviews averaging 41 min with 20 Massachusetts physicians from 5 different subspecialties, in practice for 8–51 years. Interview recordings were transcribed verbatim for conventional content analysis. Results Most participants defined disability using medically-focused concepts rather than concepts that recognize how social factors contribute to disability. All participants used disability culturally-competent language, such as “person-first language,” at some points throughout their interviews. However, most participants also employed language that is now considered unacceptable or archaic, such as variations on the word “handicap,” “wheelchair-bound,” describing persons with disability as “suffering,” and calling persons by their health condition (e.g., “COPDer”). Participants mentioned persons with mental illness and intellectual disability as particularly challenging, especially around communication and performing even routine tests or examinations. Recommendations for improving care included better listening to patients with disability and seeking their views about their care. Conclusions In this exploratory study, most participants used language that is considered disability culturally competent at times but also employed many terms and concepts that are considered outdated and may be troubling to some persons with disability.

Americans generally want to remain in their homes even if they develop chronic health problems or disabilities that qualify them for nursing home care. While family members or friends provide the preponderance of home-based support, millions of Americans use paid personal assistance services (PAS). Inexorable demographic trends are increasing the numbers of people who need paid home-based PAS, with this need rapidly outstripping the capacity of the paid PAS workforce. While many factors contribute to this widening discrepancy, its roots reach back more than eighty years to asynchrony among various policies affecting home-based supports for people with functional impairments and policies affecting home-based PAS workers. Finding solutions to the growing gap between demand for the services and the PAS workforce requires policies that cut across societal sectors and align incentives for consumers, workers, and other key stakeholders.

Background Mobility limitations are the most common disability type among the 61 million Americans with disability. Studies of patients with mobility limitations suggest that inaccessible medical diagnostic equipment poses significant barriers to care. Methods The study team surveyed randomly selected US physicians nationwide representing seven specialties about their reported use of accessible weight scales and exam tables/chairs when caring for patients with mobility limitations. A descriptive analysis of responses was performed, and multivariable logistic regression was used to examine associations between accessible equipment and participants’ characteristics. Results The 714 participants (survey response rate = 61.0%) were primarily male, White, and urban, and had practiced for 20 or more years. Among those reporting routinely recording patients’ weights (n = 399), only 22.6% (standard error [SE] = 2.2) reported always or usually using accessible weight scales for patients with significant mobility limitations. To determine weights of patients with mobility limitations, 8.1% always, 24.3% usually, and 40.0% sometimes asked patients. Physicians practicing ≥ 20 years were much less likely than other physicians to use accessible weight scales: odds ratio (OR) = 0.51 (95% confidence interval [CI] = 0.26–0.99). Among participants seeing patients with significant mobility limitations (n = 584), only 40.3% (SE = 2.2) always or usually used accessible exam tables or chairs. Specialists were much more likely than primary care physicians to use accessible exam tables/chairs: OR = 1.96 (95% CI = 1.29–2.99). Conclusion More than 30 years after enactment of the Americans with Disabilities Act, most physicians surveyed do not use accessible equipment for routine care of patients with chronic significant mobility limitations.

Objective We explored the process of cancer care for patients with preexisting mobility disability, focusing on treatment decisions and experiences. Design We recruited 20 participants with preexisting mobility disability, requiring use of an assistive device or assistance with activities of daily living, subsequently diagnosed with cancer (excluding skin cancers). We conducted open-ended individual interviews, which reached data saturation and were transcribed verbatim for conventional content analysis. Results Concerns coalesced around 4 themes: disability-related healthcare experiences affect cancer treatment decisions; concerns about cancer treatment worsening functional impairments; access barriers; and limited provider awareness and biases about treating people with disability. Residual fear from previous medical interventions and concerns about exacerbating functional impairments influenced cancer treatment preferences. Participants also raised concerns that their underlying disability may be used to justify less aggressive treatment. Nevertheless, cancer treatment did exacerbate mobility difficulties for some participants. Inaccessible hospital rooms, lack of accessible medical equipment, and attitudinal barriers complicated treatments. Conclusions People with preexisting mobility disability experience barriers to cancer treatment, compromising quality of care and potentially outcomes. Further training and proactive planning for accommodating disability during cancer treatment and rehabilitation are warranted. To claim cme credits Complete the self-assessment activity and evaluation online at http://www.physiatry.org/JournalCME. Cme objectives Upon completion of the article, the reader should be able to: (1) Recognize inadequate accommodations that compromise the diagnosis and treatment of a new cancer in patients with preexisting disability; (2) Recommend involving rehabilitation specialists in the process of care and clinical decision making from the time of cancer diagnosis for patients with preexisting disability newly diagnosed with malignancy; and (3) In the setting of accessibility barriers, facilitate efforts to accommodate patients with preexisting disability to improve quality of care in diagnosing and treating cancer. Level Advanced. Accreditation The Association of Academic Physiatrists is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.The Association of Academic Physiatrists designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should only claim credit commensurate with the extent of their participation in the activity.

Introduction Studies suggest that women with disability experience disparities in routine, high-value screening services, including mammograms and Papanicolaou (Pap) tests. However, few studies have explored whether women with disability have higher risks than other women of developing breast or cervical cancers. Methods The authors analyzed 2010, 2013, 2015, and 2018 National Health Interview Surveys, which involved civilian, noninstitutionalized US residents, and included supplemental surveys on cancer screening. The authors used self-reported functional status limitations to identify women without disability and women with movement difficulties (MDs) or complex activity limitations (CAL) predating breast or cervical cancer diagnoses. Multivariable models evaluated associations of disability status to cancer diagnosis, adjusting for other variables. Analyses used sampling weights, producing national estimates. Results The sample included 66,641 women; 24.4% reported MD and 14.5% reported CAL. Compared with women without disability, women with pre-existing MD or CAL had significantly higher rates of breast cancer (2.2% vs. 3.5% and 3.6%, respectively) and cervical cancer (0.6% vs. 0.8% and 1.0%, respectively). Women with disability had significantly lower recent mammography and Pap test rates than women without disability. After adjusting for all covariates, the values for odds ratio (95% confidence interval) of pre-existing CAL for cancer diagnoses were 1.21 (1.01-1.46; P=0.04) for breast cancer and 1.43 (1.04-1.99; P=0.03) for cervical cancer. Conclusions Pre-existing disability is associated with a higher likelihood of breast and cervical cancer diagnoses, raising the urgency of eliminating disability disparities in mammography and Pap testing. Further research will need to explore the causes of these higher cancer rates.

BACKGROUND: Mobility disability is the most common disability among adult Americans, estimated at 13.7% of the US population. Cancer prevalence is higher among people with mobility disability compared with the general population, yet people with disability experience disparities in cancer screening and treatment. OBJECTIVE: We explored experiences of patients with mobility disability with the process of cancer diagnosis. DESIGN: Open-ended individual interviews, which reached data saturation. Interviews were transcribed verbatim for conventional content analysis. PARTICIPANTS: We interviewed 20 participants with pre-existing mobility disability that required the use of an assistive device or assistance with performance of activities of daily living and who were subsequently diagnosed with cancer (excluding melanoma). KEY RESULTS: Concerns coalesced around five broad categories: inaccessibility of medical diagnostic equipment affecting the process of cancer diagnosis, attitudes of clinical staff about accommodating disability, dismissal of cancer signs/symptoms as emotional responses to chronic health conditions, misattributing cancer signs/symptoms to underlying disability, and attitudes about pursuing legal action for substandard care. Participants provided examples of how erroneous assumptions and potentially biased attitudes among clinicians interfered with the process of their cancer diagnosis, sometimes contributing to an insufficient workup and diagnostic delays. CONCLUSIONS: Physical and attitudinal barriers affect the process of cancer diagnosis in people with mobility disability. Though people with mobility disability may be clinically complex, clinicians should be aware of the risks of diagnostic overshadowing (i.e., the misattribution of cancer signs/symptoms to underlying disability) and other erroneous assumptions that may affect timeliness of cancer diagnosis and quality of care. Further efforts, including educating clinicians about challenges in caring for persons with disability, should be considered to improve the process of cancer diagnosis for this population. TRIAL REGISTRATION: N/A SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11606-020-06327-7.

Disability is relevant to almost all people at some point across their lifespan. Nonetheless, persons with disability are often marginalized and stigmatized in the USA, including in health care. Disparities in health and health care are increasingly documented, especially for certain subpopulations of persons with disability. Disabilities are heterogeneous; therefore, to perform various life activities, including receiving health care, individuals with disability require accommodations specific to their particular needs. Especially pertinent in educational settings, learning disabilities encompass a diverse range of experiences and accommodation requirements. Historically, health care professionals have been afraid to reveal disability for fear of being forced to leave practice or undergo extensive evaluation. Therefore, little is known about this largely invisible group of clinicians. Having more persons with disability in health care professions could potentially decrease disability-related health care disparities. However, welcoming persons with disability into these professional roles faces considerable challenges.

The Acute Community Care Program (ACCP) initiative sends specially trained paramedics to evaluate and treat patients with urgent care problems in their residences during evening hours. ACCP safety depends on making appropriate triage decisions from patients’ reports during phone calls about whether paramedics could care for patients’ urgent needs or whether they require emergency department (ED) services. Furthermore, after ACCP paramedics are on scene, patients may nonetheless need ED care if their urgent health problems are not adequately treated by the paramedic’s interventions. To train clinical staff participating in all aspects of ACCP, including these triage decisions, ACCP clinical leaders developed brief vignettes: 27 represented initial ACCP triage decisions and 10 the subsequent decision to send patients to EDs. This report describes findings from an online survey completed by 24 clinical staff involved with ACCP triage. Clinical vignettes could be useful for staff training and quality control in such paramedic initiatives.

Background Few U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives. Objective We aimed to engage youth ages 13–17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life. Methods Participants videoed and photographed their experiences following general guidelines from the researchers about topics of interest. Participants made their own choices about what they submitted. We used conventional content analysis to identify broad themes. Results The mean (standard deviation) age of the 10 participants was 15.2 (1.9) years; 5 were male; 9 participants were white. All 5 girls submitted multiple self-focused (selfie) videos made in their bedrooms; the 5 boys submitted more diverse data files. Several broad themes or topics emerged including: the effects of timing and trajectory of the parent's disability; perceptions of early maturity and responsibility; fears and frustrations relating to the parent's disability; support and emerging resilience; and sense of social justice. Participants generally felt their parents' disability made them become – compared to their peers – more mature, responsible, capable of performing household tasks, and aware of disability civil rights. Conclusions Participants raised many issues that health care providers should be aware of when youth have parents with mobility disability. A parent's mobility disability may be associated with resilience but also may pose challenges for youth. More research is needed to understand better adolescents' experiences and how clinicians might best assist these youth.

Background: The benefits of breastfeeding are well established, and breastfeeding is now widely practiced in the United States. Although increasing numbers of women with physical disabilities are having children, little information is available about breastfeeding practices among these women. Nonetheless, the children of women with physical disabilities should benefit from breastfeeding just as children of nondisabled mothers do. Research aim: This study aimed to explore the facilitators and barriers to breastfeeding among women with physical disabilities. Methods: This study involved semistructured telephone interviews with a convenience sample of women ( N = 25) with diverse physical disabilities from across the United States. All participants had given birth within the past 10 years. Interviews were audio-recorded, professionally transcribed, and analyzed using content analysis. Results: Analyses found four broad themes indicating facilitators to breastfeeding: (a) adaptations and equipment, (b) use of breast pump, (c) physical assistance from others, and (d) peer support. We also found five broad themes suggesting barriers to breastfeeding: (a) lack of supports, (b) disability-related health considerations, (c) limited information, (d) difficulties with milk production, and (e) difficulties latching. Conclusion: The need for greater supports for women with physical disabilities who desire to breastfeed as well as information for women and their clinicians about facilitating breastfeeding.

Women with physical disabilities increasingly aspire to become pregnant and bear children. Limited information about the potential interaction of their disabling conditions with pregnancy and childbirth exists to guide these women and their clinicians.The interview guide was created with questions on topics such as pregnancy complications and secondary conditions, the impact of prior surgeries, experiences with pain relief during labor, and the impact on women's independence and participation in life activities. Interviews were conducted by telephone with 25 women with physical disabilities. They were subsequently transcribed verbatim and analyzed by using Atlas TI.Women generally reported a relatively modest impact of disabling conditions on their pregnancies. Most women were satisfied with the mode of delivery, but they experienced challenges during the labor and delivery process. The women found that careful advanced planning was helpful in managing the impact of their disabling conditions. The involvement of clinicians with disability-related expertise was, in some cases, another factor that contributed to a positive outcome.The importance of advanced planning and the utility of involving clinicians with disability-related expertise suggest that the use of integrated, interdisciplinary team approaches could promote quality care by facilitating improved planning and management. Additional clinical research is needed to provide women and their clinicians with more information on potential complications and options for labor and delivery.

Background Childbirth is widely acknowledged as one of the most painful experiences most women will undergo in their lifetimes. Alleviating labor and delivery pain for women with physical disabilities can involve an additional level of complexity beyond that experienced by most women, but little research has explored their experiences. Objective The purpose of this study was to explore the experiences of women with physical disabilities with respect to pain relief during labor and delivery with the goal of informing their care. Methods Data were collected using semi-structured interviews with twenty-five women with physical disabilities from across the United States. Results Women expressed specific preferences for the method of pain relief. Some confronted systemic barriers in exploring their options for pain relief, while others were given a choice. At times, anesthesiologists lacked knowledge and experience in caring for women with disabilities. Conversely, some women described how the administration of anesthesia was meticulously planned and attributed their positive labor and delivery experiences to this careful planning. Conclusions Advanced, individualized planning and evaluation of their options for pain relief was most satisfying to women and enabled them to make an informed choice. This approach is consistent with the recommendations of clinicians who have successfully provided pain relief during labor to women with complex physical disabilities. Clinicians who have successfully delivered babies of women with these and similar disabilities emphasize the importance of a team approach where the anesthesiologist and other specialists are involved early on in a woman's care.

Background Although many women with physical disabilities report poor quality reproductive health care, little research has addressed labor, delivery, and anesthesia experiences of these women. This study was conducted to explore these experiences in women with significant mobility disabilities. Methods A qualitative descriptive study was conducted with 22 women from the United States who had delivered newborns within the prior 10 years. All had significant mobility disabilities. Two-hour, in-depth telephone interviews were conducted using a semistructured, open-ended interview protocol, which addressed many topics, including labor, delivery, and anesthesia experiences. We recruited most participants through social networks, interviewing women from 17 states. Conventional content analysis, facilitated by NVivo software, was used to identify major themes. Results The mean age of women was 34.8 ± 5.3 years. Most women were white, college educated, and used wheeled mobility aids. Four key themes emerged from participants’ narratives of laboring and giving birth with a disability. These included women's preferences for type of delivery, clinicians and some women expected no labor pain, fears prompting active advocacy, and positive experiences. As participants discussed their experiences with anesthesia, four additional themes were identified: importance of consultation with the anesthesia team, decisions about epidural/spinal vs general anesthesia, failed epidural with repeated efforts, and fear of injury related to anesthesia. Conclusions The responses of women in this study suggest that there is need to make intrapartum care better for women with physical disabilities and to improve their experiences with labor, birth, and obstetric anesthesia care.

Background When assessing results of health care delivery system reforms targeting persons with disability, quality metrics must reflect the experiences and perspectives of this population. Objective For persons with disability and researchers to develop collaboratively a survey that addresses critical quality questions about a new Massachusetts health care program for persons with disability dually-eligible for Medicare and Medicaid. Methods Persons with significant physical disability or serious mental health diagnoses participated fully in all research activities, including co-directing the study, co-moderating focus groups, performing qualitative analyses, specifying survey topics, cognitive interviewing, and refining survey language. Several sources informed survey development, including key informant interviews, focus groups, and cognitive testing. Results We interviewed 18 key informants from key stakeholder groups, including disability advocates, health care providers, and governmental agencies. We conducted 12 total English- and Spanish-language focus groups involving 87 participants (38 with physical disability, 49 with mental health diagnoses). Although some details differed, focus group findings were similar across the two disability groups. Analyses by collaborators with disability identified 29 questions for persons with physical disability and 38 for persons with mental health diagnoses. After cognitive testing, the final survey includes questions on topics ranging from independent living principles to health care delivery system concerns. Conclusions The Persons with Disabilities Quality Survey (PDQ-S) captures specific quality concerns of Massachusetts residents with physical or mental health disability about an integrated health plan. PDQ-S requires further testing elsewhere to determine its value for quality assessment more generally and to other populations with disability.

Background Although growing numbers of women with mobility disability are becoming pregnant and desiring motherhood, relatively little is known about their pregnancy experiences or what they might recommend to other women with mobility disability contemplating pregnancy. Methods Using a semistructured, open-ended interview protocol, we conducted 2-hour telephone interviews with 22 women who had a significant mobility disability before becoming pregnant and had delivered babies within the prior 10 years. We recruited most interviewees through online social networks. We used NVivo software to sort interview transcript texts and performed conventional content analyses to identify major themes. Results Participants’ mean ± standard deviation age was 34.8 ± 5.3 years; most were White, well-educated, and middle income and 18 used wheeled mobility aids. Recommendations for other women with mobility disability coalesced around five themes: recognizing the possibility of giving birth, advocacy and support, being informed, approaches toward obstetrical practitioners, and managing fears about losing custody of their child. Lacking information about what to expect during their pregnancy was a significant problem. Women got information about pregnancy from diverse sources, but questions arose about accuracy and relevance of this information to individual circumstances. Women urged their peers to advocate for their preferences and needs with obstetrical practitioners. Conclusions Women with mobility disability who had delivered babies offered constructive advice for their peers who desire pregnancy. Increasing availability of accurate and relevant information about pregnancy among women with mobility disability is critically important, as is training obstetrical practitioners to provide patient-centered care to these women during pregnancy.

Accessibility of Medical Diagnostic Equipment In December, the U.S. Department of Justice halted efforts on a national level to make medical diagnostic equipment accessible to people with disabilit...

Background: Approximately 61 million Americans have a disability. Little research has explored whether disability is associated with subsequent diagnosis of cancer, the second-leading cause of death in the United States. The objective of this study was to explore associations between cancer and disability, focusing on 4 cancers that may present with nonspecific symptoms that could be conflated with aspects of disability, thus delaying cancer diagnoses. An analysis of a nationally representative survey using sampling weights to produce national estimates was performed. Methods: Civilian, noninstitutionalized US residents responding to the 2010–2017 National Health Interview Surveys totaling 259,392 Sample Adult Core survey respondents were included. We used self-reported functional status limitations to identify persons with movement difficulties (MD), complex activity limitations (CAL), and no disability. Multivariable regressions predicting cancer diagnosis included sociodemographic characteristics, tobacco use, body mass index, access to care indicators, and disability status. Results: Persons with preexisting disability had significantly higher rates of cancer (ranging from 0.40 [SE, 0.05] for ovarian to 3.38 [0.14] for prostate) than did those without disability (0.20 [0.02] and 1.26 [0.04] for the same cancers; all PConclusions: Our population-based analyses suggest that persons with disability may constitute a high-risk population, with higher cancer incidence. Optimizing appropriate screening and fully investigating new signs and symptoms are therefore critical for patients with disability.

Introduction Being deaf or hard of hearing can be marginalizing and associated with inequitable health outcomes. Until recently, there were no U.S. population-based studies of pregnancy outcomes among deaf or hard of hearing women. In light of inconsistent findings in the limited available literature, this study sought to conduct a more rigorous study using population-based, longitudinal linked data to compare pregnancy complications, birth characteristics, and neonatal outcomes between deaf or hard of hearing and non-deaf or hard of hearing women. Methods Researchers conducted a retrospective cohort study in 2019 using the Massachusetts Pregnancy to Early Life Longitudinal data system. This system links all Massachusetts birth certificates, fetal death reports, and delivery- and nondelivery-related hospital discharge records for all infants and their mothers. The study included women with singleton deliveries who gave birth in Massachusetts between January 1998 and December 2013. Results The deaf or hard of hearing women had an increased risk of chronic medical conditions and pregnancy complications including pre-existing diabetes, gestational diabetes, pre-eclampsia and eclampsia, and placental abruption. Deliveries to deaf or hard of hearing women were significantly associated with adverse birth outcomes, including preterm birth, low birth weight or very low weight, and low 1-minute Apgar score or low 5-minute Apgar score. No significant differences were found in size for gestational age, fetal distress, or stillbirth among deaf or hard of hearing women. Conclusions Findings from this 2019 study indicate that deaf or hard of hearing women are at a heightened risk for chronic conditions, pregnancy-related complications, and adverse birth outcomes and underscore the need for systematic investigation of the pregnancy- and neonatal-related risks, complications, costs, mechanisms, and outcomes of deaf or hard of hearing women.

Disability civil rights laws require equitable treatment of the approximately sixty-one million Americans with disability. However, federal reports and numerous research studies indicate that this diverse and growing population often experiences health care disparities. To examine one possible contributing factor, we interviewed practicing physicians to explore their knowledge of their obligations to accommodate patients with disability under federal civil rights law. Interviewees reported having had little formal training about, and demonstrated superficial or incorrect understanding of, their obligations in three potentially problematic areas: deciding which accommodations their practices should implement, refusing patients with disability, and holding patients accountable for costs of accommodations. The fact that practicing physicians might not fully understand their legal responsibilities when caring for people with disability may contribute to persisting inequity in their care, and it suggests that further education in the Americans with Disabilities Act and other disability civil rights laws may be warranted.

Background Disease-modifying therapies benefit individuals with relapsing forms of multiple sclerosis, but their utility remains unclear for those without relapses. Objective To determine disease-modifying therapy use and costs in 2009, compare use in 2009 and 2000, and examine compliance with evidence-based guidelines. Methods We determined the extent and characteristics of disease-modifying therapy use by participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study (Slifka) in 2000 ( n=2156) and 2009 ( n=2361) and estimated out-of-pocket and total (payer) costs for 2009. Two multivariable logistic regressions predicted disease-modifying therapy use. Results Disease-modifying therapy use increased from 55.3% in 2000 to 61.5% in 2009. In 2009, disease-modifying therapy use was reported by 76.5% of participants with relapsing-remitting multiple sclerosis, 73.2% with progressive-relapsing multiple sclerosis, 62.5% with secondary progressive multiple sclerosis, and 41.8% with primary progressive multiple sclerosis. Use was significantly associated with relapsing-remitting multiple sclerosis, shorter duration of illness, one to two relapses per year, non-ambulatory symptoms, using a cane, younger age, higher family income, and having health insurance. Average annual costs in 2009 were US$939–3101 for patients and US$16,302–18,928 for payers. Conclusion Use rates were highest for individuals with relapsing-remitting multiple sclerosis, but substantial for those with progressive courses although clinical trials have not demonstrated significant benefits for them.

Background Given the growing population of U.S. adults with obesity and mobility disability, physicians will need to accommodate these patients. Objective To explore attitudes and practices of US physicians related to caring for patients with obesity and mobility disability. Methods Three open-ended, semi-structured, web-based focus group interviews with practicing physicians in selected specialties, which reached data saturation. Interviews were video recorded and transcribed for qualitative, conventional content analysis. Measurements included commonly expressed themes around caring for patients with obesity. Results Physicians recognized obesity as a disability that poses challenges to high quality, safe, and efficient patient care. Observations coalesced around four themes: (1) difficulty routinely tracking weight; (2) reluctance to transfer obese patients to exam tables; (3) barriers to diagnostic testing; and (4) weight stigma. Physicians described difficulties accurately assessing weight, performing complete physical examinations, arranging diagnostic imaging, and providing prenatal care for obese patients. Lack of accessible medical diagnostic equipment impeded care for patients with obesity. Other participants did not contest comments of individual participants’ that suggested weight stigma. Conclusions Our findings suggest that important gaps may remain in providing equitable access to care for patients with obesity, requiring additional training and accessible medical diagnostic equipment to safely accommodate these patients.

INTRODUCTION: The purpose of this study is to estimate the national occurrence of deliveries in women with hearing loss and to compare their birth outcomes to women without hearing loss. METHODS: This study examined the 2008–2011 Nationwide Inpatient Sample of the Healthcare Cost and Utilization Project in 2015 to compare birth outcomes in women with hearing loss and without. Birth outcomes included preterm birth and low birth weight. Multivariate regression analyses compared birth outcomes between women with and without hearing loss, controlling for maternal age, racial and ethnic identity, type of health insurance, comorbidity, region of hospital, location and teaching status of the hospital, ownership of the hospital, and median household income for mother’s ZIP code. RESULTS: Of an estimated 17.9 million deliveries, 10,462 occurred in women with hearing loss. In adjusted regression analyses controlling for demographic characteristics, women with hearing loss were significantly more likely than those without hearing loss to have preterm birth (OR=1.28, 95% CI=1.08, 1.52, p

Background Women with disabilities are at risk for poor birth outcomes. Little is known about specific potentially disabling health conditions and their effects on pregnancies. Using hospital claims, we identified women at risk for disability and evaluated the relationship between disability risk and demographic characteristics, pregnancy risks, and infant and maternal outcomes. Methods The 2006 through 2009 Massachusetts Pregnancy to Early Life Longitudinal data system linked birth certificate and hospital claims one year pre-pregnancy through delivery. Access Risk Classification System categorized International Classification of Diseases, Ninth Revision, Clinical Modification /Current Procedural Terminology codes into disability risk groups (no/limited vs. medium/high). Generalized estimating equations evaluated the association between disability risk and infant and maternal outcomes. Results Of 221,867 women, 14,701 (6.6%) were at medium or high risk of disability. Health conditions were classified as circulatory (23%), musculoskeletal (10%), nervous system/sensory (13%), other physical (19%), two or more physical (5%), mental illness (24%), and comorbid mental/physical (6%). Women at risk of disability were more likely than others to have socioeconomic and pregnancy risks, and adverse infant and maternal outcomes. Socioeconomic and risk profile varied by health condition category. Adjusted risk ratios for preterm birth ranged from 1.2 (95% confidence interval [CI], 1.1–1.4) for women with nervous system/sensory diagnoses to 1.6 (95% CI, 1.4–1.9) for women with two or more physical diagnoses; risk ratios for maternal delivery hospitalization for more than 5 days ranged from 1.5 (95% CI, 1.2–1.9) for women with musculoskeletal diagnoses to 3.0 (95% CI, 2.5–3.6) for women with comorbid mental/physical diagnoses. Conclusions Disability risk identified through claims is associated with poor infant and maternal outcomes. Risk profiles vary by underlying health condition.

Background Despite concerns raised in the literature on the adverse pregnancy outcomes of women with physical disabilities, there is little information about unmet needs of women with physical disabilities during pregnancy and childbirth. Objective This article provides an in-depth examination of unmet health care needs during and around the time of pregnancy among a sample of women with physical disabilities. It also offers recommendations to other women with physical disabilities who are considering pregnancy. Methods Twenty-five phone interviews were conducted with women with physical disabilities from across the United States who had a baby in the past ten years. Individual semi-structured qualitative interviews lasting about 2 h were conducted. Interviews were audio-recorded, transcribed, and analyzed using an iterative, interpretive process. Results Women reported a wide range of disabling conditions. Analysis revealed three broad themes related to unmet needs during pregnancy among women with physical disabilities. They included (1) clinician knowledge and attitudes, (2) physical accessibility of health care facilities and equipment, (3) need for information related to pregnancy and postpartum supports. The women also provided recommendations to other women with disabilities who are currently pregnant or thinking of becoming pregnant. Recommendations related to finding a clinician one trusts, seeking peer support, self-advocating, and preparing oneself for the baby. Conclusions This study sheds light on the unmet needs and barriers to care of women with mobility disabilities during pregnancy and childbirth. The study findings highlight the need for policy and practice recommendations for perinatal care of women with mobility disabilities.

Introduction Data from 20 years ago—shortly after passage of the Americans with Disabilities Act—showed that women with significant mobility disability had 40% lower Pap test rates than other women. Methods To examine whether disability disparities in Pap test rates have diminished over time, this study analyzed National Health Interview Survey responses from selected years between 1998 and 2010 from women aged 21–65 years without histories of cervical cancer or hysterectomy. Seven chronic disability types were identified using self-reported functional impairments or participation limitations. Self-reported Pap testing within the previous 3 years was studied. Bivariable analyses and multivariable logistic regression analyses controlling for sociodemographic variables were conducted in 2014. Results Rates of all chronic disability types increased over time. Pap test rates remained relatively constant over time for all women, holding around 84%–87%. Bivariable analyses found statistically significantly lower rates of Pap testing for women with disability compared with nondisabled women. Multivariable analyses failed to find consistent evidence of lower Pap test rates among women across disability types compared with nondisabled women. In 2010, the AOR for reporting Pap testing for women noting the most severe movement difficulty compared with nondisabled women was 0.35 (95% CI=0.15, 0.79). However, the AOR for this disability type varied over time. Conclusions Little has changed over time in Pap test rates for all women. Women with certain disabilities continue to experience disparities compared with nondisabled women in receipt of this important screening test.

This cross-sectional study applies natural language processing to electronic health records from a large health care delivery system to examine performance status documentation among patients newly diagnosed with colorectal cancer.

Background The 21st Century Cures Act, enacted in 2016, mandates that Medicaid programs must implement Electronic Visit Verification (EVV) for home-based personal assistance services (PAS) and home health care (HHC) by January 2020. EVV involves real-time tracking of arrival and departure times, locations, and sometimes activities of PAS and HHC workers for home-based consumers. Objective We examined the views and perceptions of consumers with disability and paid PAS workers about EVV. Methods Our qualitative study consisted of in-depth interviews with 21 home-based PAS consumers with significant disability and 20 PAS workers. Thirteen consumers and 10 workers commented on EVV. We audio-recorded interviews and had these recordings transcribed verbatim by a professional transcription service. We used conventional content analysis to identify key themes from the interviews. Results Qualitative interviews suggest that EVV is intrusive, reduces flexibility from the consumer-worker relationship, has technical difficulties, but may help certain consumers. Our results suggest that EVV interferes with the standard way PAS is provided and raises fears about EVV negatively affecting recruitment and retention of PAS workers. Conclusions Policymakers should consider these perspectives and concerns as states implement EVV. Policymakers will need to monitor the effects of EVV on both PAS consumers and workers over time to ensure that EVV is not negatively affecting provision of these essential services.

The Acute Community Care Program (ACCP), otherwise known as mobile integrated health, which is based at Commonwealth Care Alliance (CCA) in Massachusetts uses specially trained paramedics to respond to urgent care calls to evaluate and treat patients, as appropriate, within their home or institutional residences (e.g., nursing homes) with the goal of avoiding unnecessary emergency department visits and potential hospital admissions. The population served by ACCP at CCA are clinically complex, socio-economically disadvantaged patients with heavy burdens of multimorbidity and physical and mental health disability. Funded by PCORI, we used in-depth, open-ended interviews to examine the training and skills, workplace experiences, and satisfaction of paramedics. We interviewed 23 people who are either ACCP paramedics or non-ACCP paramedics. Using a thematic analysis approach for qualitative analysis, we found important themes around Interpersonal skills and attributes of paramedics along with challenges of the profession. In particular, we found that paramedics: (1) report frequently working with patients with psychiatric needs; (2) report having inadequate behavioral health training; and (3) have many challenges in managing patients with psychiatric needs where they rely heavily on their experience and/or strong interpersonal skills, not training to address the needs of this population. This data indicates that there is a gap in paramedic training related to behavioral health. It is important to build the competencies of paramedics working in mobile integrated health so this workforce can appropriately respond to patients with psychiatric needs in order to better serve this population.

Background Despite limitations in their clinical content, claims data from administering health plans can provide important insights about service use and outcomes across large populations. However, using claims data to investigate care and outcomes among persons with disability is challenging because standard diagnosis, procedure, and medication codes provide little information about functional impairments or disability. Objective To explore whether supportive services claims provide useful information for predicting health care outcomes among persons with chronic disease and disability. Methods We used administrative data from a nonprofit, Massachusetts health plan, including members who were 21 years of age and older and dually-eligible for Medicare and Medicaid. With procedure codes, we identified long-term services and supports and ventilator and percutaneous endoscopic gastrostomy supplies. Data from calendar year 2015 were used to predict deaths and hospitalizations in 2016. Hazards ratio analyses predicted these outcomes adjusting for age, sex, disease burden, and amount of personal assistance and homemaker services used (proxy functional status measure). Results In bivariate analyses, all four predictors were statistically significant for both outcomes. In the full model, the proxy functional status measure did not statistically significantly predict hospitalization or death. After eliminating disease burden from the model, the proxy functional status measure became statistically significant, with hazards ratios of 1.006 for hospitalization (p = 0.0011) and 1.014 (p = Conclusions Claims for supportive services could be proxies for disability in analyses using administrative data, but additional research must demonstrate their usefulness for predicting health care outcomes.

BACKGROUND: Patient-centered care for people with disability requires effective communication and compliance with the Americans with Disabilities Act (ADA). OBJECTIVE: To understand physicians’ perspectives on communication experiences with people with disability. DESIGN: Twenty semi-structured individual interviews. Interview recordings were transcribed verbatim for analysis. SETTING: Massachusetts, October 2017–January 2018. PARTICIPANTS: Twenty physicians ranging from 8 to 51 years in practice in primary care or 4 other specialties. MEASUREMENTS: Commonly expressed themes around communication with people with disability. RESULTS: Concerns coalesced around 4 broad categories: communication experiences with people who are deaf or hard of hearing, communication with people who are blind or have vision impairment, communication with people who have intellectual disability, and recommendations for improving communication. Although participants in this study reported various efforts to communicate effectively with patients with hearing or vision loss or intellectual disability, many gaps appear to remain, as well as instances where physicians’ preferences run counter to patients’ wishes and the ADA. Examples include physicians’ preferences for remote, online sign language interpreters despite patients desiring in-person interpreters and suggesting that patients arrange for their own interpreters. Few educational materials are available in braille, and electronic medical records may not allow documents to be printed in large font for persons with low vision. Communicating with patients with intellectual disability raised particular concerns, with participants often preferring to interact with caregivers and minimal efforts to involve patients. CONCLUSIONS: Effective communication is necessary for ensuring the quality of health care for people with disability, and it is legally required under the ADA. Our results suggest that important gaps may remain in ensuring effective communication, and some practicing physicians could benefit from formal training in effective methods for communicating with patients with disability. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-019-04911-0) contains supplementary material, which is available to authorized users.

There is a paucity of information concerning adaptive parenting strategies utilised by mothers with physical disabilities, particularly during early motherhood. The purpose of this study is to describe the adaptive strategies used by mothers with physical disabilities during early motherhood. This qualitative study included semi-structured telephone interviews between January and March 2014 with US mothers with a range of physical disabilities who had a baby within the past 10 years (N = 25). Interviews were audio-recorded, professionally transcribed, and coded using content analysis. Analysis revealed five broad themes indicating important adaptive parenting strategies for mothers with physical disabilities caring for infants and toddlers: They are as follows: (a) acquiring or modifying baby-care equipment, (b) adapting the home environment, (c) accessing information and supports, (d) developing communication strategies to facilitate safety, and (e) receiving assistance from others. This study indicates that mothers with physical disabilities employ a variety of adaptive strategies during early motherhood. The findings from the study suggest the need for more availability of supports and equipment for mothers with physical disabilities as well as information for prospective mothers with disabilities. In addition, healthcare and social work professionals must receive training about adaptive parenting strategies.

Background In October 2013, Massachusetts initiated the One Care demonstration, which enrolls beneficiaries ages 21 to 64 dually-eligible for Medicare and Medicaid. Local disability advocates argued that persons with disability should assess their own One Care quality. Objectives To test the comparative effectiveness for improving patient-reported health care experiences of two informational interventions in a 12-month period: (1) “YESHealth: Your Experience, Speak up for better health care,” in which disability advocates developed brief topical surveys and gathered information from One Care enrollees with significant physical disability or serious mental illness; and (2) the Persons with Disability Quality Survey (PDQ-S), developed collaboratively with persons with disability. Methods This cluster randomized controlled trial randomly assigned 27 primary care practices with ≥50 One Care members to three study arms differing by information provided to practice directors and primary care providers (PCPs): (1) quarterly YESHealth reports plus results from baseline administration of PDQ-S to 720 enrollees before YESHealth implementation; (2) PDQ-S results only; and (3) no study information. We administered PDQ-S again one year later and used difference-in-differences analyses of results across the two years to assess intervention outcomes. Results Disability advocates conducting YESHealth reported substantial difficulties contacting practices and engaging PCPs. With few exceptions, no differences were found across the three study arms in enrollee-reported outcomes. Conclusions Providing consumer-designed and generated quality information to PCPs had no measurable effect on enrollees' perceptions of One Care quality. Barriers to PCPs engaging with disability advocates could have contributed to YESHealth's failure to improve care.

Dangers of Diagnostic Overshadowing Though Michael’s primary progressive multiple sclerosis was diagnosed when he was 42 and forced him to retire at 50, he continued to live a rich life. But like m...

Objectives The objective of this study is to describe the maternal characteristics, pregnancy complications, and birth outcomes among a representative sample of Rhode Island women with disabilities who recently gave birth. Methods Data from the 2002-2011 Rhode Island Pregnancy Risk Assessment Monitoring System survey were analyzed. Results Approximately 7% of women in Rhode Island reported a disability. Women with disabilities reported significant disparities in their health care utilization, health behaviors, and health status before and during pregnancy and during the postpartum period. Compared with nondisabled women, they were significantly more likely to report stressful life events and medical complications during their most recent pregnancy, were less likely to receive prenatal care in the first trimester, and more likely to have preterm births (13.4%; 95% CI, 11.6-15.6 compared with 8.9%; 95% CI, 8.5-9.3 for women without disabilities) and low-birth-weight babies (10.3%; 95% CI, 9.4-11.2 compared with 6.8%; 95% CI, 6.8-6.9). There was no difference in the rates of cesarean section between women with and without disabilities. Conclusions These findings support the need for clinicians providing care to pregnant women with disabilities to be aware of the increased risk for medical problems during pregnancy and factors that increase the risk for poor infant outcomes.

Study design Cross-sectional study Objective To examine prevalence of pregnancy and associations with sociodemographic and clinical factors among women with spinal cord injury (SCI) Setting U.S. National Spinal Cord Injury Database, an SCI registry that interviews participants 1, 5, and then every 5 years post-injury. Data include SCI clinical details, functional impairments, participation measures, depressive symptoms, and life satisfaction. Women ages 18-49 are asked about hospitalizations in the last year relating to pregnancy or its complications. Data represent 1,907 women, who completed 3,054 interviews. Methods We used generalized estimating equations to examine bivariable associations between pregnancy and clinical and psychosocial variables and to perform multivariable regressions predicting pregnancy. Results Across all women, 2.0% reported pregnancy during the prior 12 months. This annual prevalence differed significantly by years elapsed since injury; the highest rate occurred 15 years post-injury (3.7%). Bivariable analyses found that younger age at injury was significantly associated with current pregnancy (P < 0.0001). Compared with nonpregnant women, those reporting current pregancy were significantly more likely to be married or partnered, have sport-related SCI, have higher motor scores, and have more positive psychosocial status scores. Multivariable analyses found significant associations between current pregnancy and age, marital status, motor score, and mobility and occupation scale scores. Conclusions Current pregnancy rates among reproductive-aged women with SCI are similar to rates of other U.S. women with chronic mobility impairments. More information is needed about pregnancy experiences and outcomes to inform both women with SCI seeking childbearing and clinicians providing their care.

Given that over 24% of women in the United States have a disability and approximately 6% of Americans use mobility aids [1], a significant number of breast cancer survivors will likely have mobility impairments [2]. Physical disability can affect body image, and women with physical disabilities hold more negative body image perceptions than other women [3]. Body image concerns are also common among breast cancer survivors [4]. Breast cancer treatment can result in decreases in body satisfaction, potential breast disfigurement, and bodily changes [5]. Research has not examined body image among women with preceding disability and breast cancer; we thus sought to explore body image perceptions among women with chronic, pre-existing physical disability who developed early-stage breast cancer.

Background Previous research has found breast and cervical cancer screening disparities between women with and without disabilities, and between women living in rural versus urban areas. Living in a rural area may add to the barriers women with disabilities experience when attempting to obtain screening for breast and cervical cancer. The purpose of this study was to examine the combination of disability status and rurality in association with receipt of breast and cervical cancer screening among women age 18 to 64 in the United States. Methods We conducted cross-sectional analyses of data from the Medical Expenditure Panel Survey, using pooled annual data files from 2002 through 2008. We compared recent receipt of breast and cervical cancer screening among four groups: 1) urban women without disabilities, 2) urban women with disabilities, 3) rural women without disabilities, and 4) rural women with disabilities. Findings Overall, women with disabilities were less likely to be up to date with mammograms and Pap tests compared with women with no disabilities. Similarly, women in rural areas were less likely to have received breast or cervical cancer screening within recommended timeframes. Women who both had a disability and lived in a rural area were the least likely to be current with screening. Conclusions Our findings suggest that living in rural regions compounds disparities in receipt of cancer screening among women with disabilities. Increased attention is needed to improve receipt of cancer screening among rural women with disabilities.

Objectives . Develop and pilot test the Health in Community Survey (HCS), to collect patients’ perceptions of care integration between traditional care providers and community-based services that address social determinants of health. Research design . Interviews of working-age, English-or Spanish-speaking patients with multiple chronic conditions to identify survey domains; cognitive interviews and pilot test of HCS Version 1. Results . Preliminary interview subjects identified diverse care concerns. From these findings, we designed six HCS domains. Cognitive interviews identified problems relating to patients’ perceptions about limited function and disability. Nearly one-third of pilot test subjects reported they did not definitely have enough resources for food, transportation, doctor and hospital bills, and medications; 41.6% said their clinicians only sometimes or never knew about their resource problems. Conclusions . Although it requires further validation, the HCS offers insights into patients’ perceptions of care integration between traditional health care providers and services addressing social determinants of health.

Background Women with physical disabilities (WPD) experience major barriers to care during pregnancy. Lack of education about disability in health professionals' education is a pervasive barrier to quality care. In an effort to explore this issue, this study examined the issue from the perspective of obstetric clinicians who provide care to WPD. Objective This qualitative descriptive study explored perspectives of obstetric clinicians who provide perinatal care for WPD to inform the educational preparation of clinicians to care for women with disabilities. Method We contacted 33 obstetric clinicians who care for pregnant WPD. Thirteen obstetricians and one nurse midwife participated in semi-structured telephone interviews. Interview transcriptions were content analyzed to identify initial themes. Investigators discussed and revised the themes as additional transcripts were reviewed and new themes were identified. Results Themes identified from transcript analyses included: lack of education at any level including during postgraduate residency and fellowship on care of pregnant WPD, unplanned career pathway, educating other clinicians, and positive and negative experiences providing obstetrical care to women with physical disability. Several clinicians provided this care because of requests from other clinicians and did not begin their careers with the goal of providing obstetric care to women with physical disabilities. None had received formal education or training including during their residencies or fellowships. The clinicians described very rewarding experiences caring for WPD. Conclusions The experiences reported by this study's participants suggest the need to include disability in undergraduate and postgraduate education and training to improve obstetric care to WPD.

The adverse consequences of postpartum depression on the health of the mother and her child are well documented. However, there is little information on postpartum depression among mothers with disabilities. This study examines the patterns of depression and depressive symptoms before, during and after pregnancy and the association between depression before and during pregnancy and postpartum depression symptomatology (PPD) among women with and without disabilities. Data from the 2009–2011 Rhode Island Pregnancy Risk Assessment Monitoring System (PRAMS) were analyzed in 2013. Almost 30 % (28.9 %; 95 % CI 22.8–35.8) of mothers with disabilities reported often or always feeling down, depressed or sad after childbirth compared to 10 % of those without disabilities (95 % CI 8.9–11.3). Compared to other women in the study, women with disabilities had a greater likelihood for PPD symptoms (RR 1.6, 95 % CI 1.1–2.2) after accounting for sociodemographics, maternal characteristics related to PPD, and depression before and during pregnancy. Adjusting for other covariates, self-reported prenatal diagnosis of depression was not associated with symptoms of PPD and depression during pregnancy was marginally associated with PPD symptomatology for women with disabilities. Women with disabilities are at a greater risk of experiencing symptoms of postpartum depression than other women. Screening for PPD among new mothers with disabilities and timely referral of those with PPD diagnosis are vital to the health of mothers with disabilities and their children.

Background Although increasing numbers of reproductive-age U.S. women with chronic physical disabilities (CPD) are becoming pregnant, little is known about their general health or comorbid health conditions. Objectives To explore general health and comorbid health conditions among women with and without CPD by current pregnancy status. Methods We analyzed responses of 47,629 civilian, noninstitutionalized women ages 18–49 from the 2006–2011 National Health Interview Surveys. The survey asks about: various movement difficulties; selected adult health conditions; self-reported general health; and current pregnancy. We identified women with CPD using responses from 8 movement difficulty questions. Results 6043 (12.7%) women report CPD. Among nondisabled women, 3.8% report current pregnancy, as do 2.0% of women with CPD. Among currently pregnant women with CPD, 29.1% report fair or poor health, compared with only 3.2% of nondisabled pregnant women. Currently pregnant women both with and without CPD are significantly less likely to report coexisting health conditions than nonpregnant women. Nonetheless, among currently pregnant women with CPD, only 24.5% report no coexisting conditions, while 28.7% report 1, 22.8% report 2, 13.2% report 3, and 10.8% report 4–6 health conditions. In a multivariable regression controlling for age category, health status, and health conditions, CPD is not statistically significantly associated with current pregnancy. Conclusions According to national survey data, it appears that pregnant women with CPD may have a complex mix of health problems and often experience fair or poor health. Better understanding the obstetrical and subspecialty needs of these women with multimorbidities requires additional investigation.

Background Prior research has noted disparities between women with and without disabilities in receipt of timely screening for breast and cervical cancer. Some studies suggest greater disparities for women with more severe disabilities, but the research to date has yielded inconsistent findings. Our purpose was to further examine differences in receipt of breast and cervical cancer screening in relation to severity of disability. Methods We analyzed Medical Expenditure Panel Survey annual data files from 2002 to 2008. Logistic regression analyses examined whether Pap smears and mammograms had been received within the recommended timeframe according to U.S. Preventive Services Task Force Guidelines. We compared four groups of women aged 18 to 64 years, categorized by presence and complexity of disability: 1) No limitations, 2) basic action difficulties only, 3) complex activity limitations only, and 4) both basic and complex activity limitations. Findings Women both with and without disabilities fell short of Healthy People 2020 goals for breast and cervical cancer screening. Overall, women with disabilities were less likely to be up to date with both mammograms and Pap tests. The magnitude of disparities was greater for women with complex limitations. Disparities in Pap testing, but not mammography, remained significant when controlling for demographic, geographic, and socioeconomic factors. Conclusions Women with more complex or severe disability were less likely to be up to date with breast and cervical cancer screenings. Targeted efforts are needed to reduce barriers to breast and cervical cancer screening for women with significant disabilities, especially those who also experience other socioecological disadvantages.