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ImportanceHealth care systems focus on delivering routine cancer screening to eligible individuals, yet little is known about the perceptions of primary care practitioners (PCPs) about barriers to timely follow-up of abnormal results.ObjectiveTo describe PCP perceptions about factors associated with the follow-up of abnormal breast, cervical, colorectal, and lung cancer screening test results.Design, Setting, and ParticipantsSurvey study of PCPs from 3 primary care practice networks in New England between February and October 2020, prior to participating in a randomized clinical trial to improve follow-up of abnormal cancer screening test results. Participants were physicians and advanced practice clinicians from participating practices.Main Outcomes and MeasuresSelf-reported process, attitudes, knowledge, and satisfaction about the follow-up of abnormal cancer screening test results.ResultsOverall, 275 (56.7%) PCPs completed the survey (range by site, 34.9%-71.9%) with more female PCPs (61.8% [170 of 275]) and general internists (73.1% [201 of 275]); overall, 28,7% (79 of 275) were aged 40 to 49 years. Most PCPs felt responsible for managing abnormal cancer screening test results with the specific cancer type being the best factor (range, 63.6% [175 of 275] for breast to 81.1% [223 of 275] for lung; P Conclusions and RelevanceIn this survey study of PCPs, important deficiencies in systems for managing abnormal cancer screening test results were reported. These findings suggest a need for comprehensive organ-agnostic systems to promote timely follow-up of abnormal cancer screening results using a primary care–focused approach across the range of cancer screening tests.

These past months of the coronavirus disease-2019 (COVID-2019) pandemic have given us ample opportunity to reflect on the US health-care system. Despite overwhelming tragedy, it is an opportunity for us to learn and to change. As we postpone routine visits because of the pandemic, we worry about risks for patients who delay cancer screening. We use cervical cancer screening and prevention as an example of how we can use some “lessons learned” from the pandemic to prevent “collateral losses,” such as an increase in cancers. COVID-2019–related health-system changes, like the more rapid evaluation of diagnostic tests and vaccines, the transition to compensated virtual care for most counseling and education visits, and broadened access to home services, offer potential benefits to the delivery of cervical cancer screening and prevention. While we detail the case for cervical cancer prevention, many of the issues discussed are generalizable to other preventative measures. It would be a tragedy if the morbidity and mortality of COVID-2019 are multiplied because of additional suffering caused by delayed or deferred cancer screening and diagnostic evaluation—but maybe with creativity and reflection, we can use this pandemic to improve care.

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 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 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.

Caregiving roles of children18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ≥21 years who as children (age 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.

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.

Little is known about current societal attitudes toward women with significant mobility disability who are visibly pregnant.To use qualitative descriptive analysis methods to examine perceptions of women with significant mobility disability about how strangers reacted to their visible pregnancies.In late 2013, we conducted 2-h telephone interviews with 22 women with significant mobility difficulties who had delivered babies within the prior 10 years. The semi-structured, open-ended interview protocol addressed wide-ranging pregnancy-related topics, including statements from strangers. Most participants were recruited through social networks, coming from 17 states nationwide. We used NVivo to sort the texts for content analysis.The women's mean (standard deviation) age was 34.8 (5.3) years; most were white, well-educated, and higher income, although half had Medicaid during their pregnancies; and 18 used wheeled mobility aids. Eighteen women described memorable interactions with strangers relating to their pregnancies or newborn babies. Strangers' statements fell into six categories: (1) curious; (2) intrusively and persistently curious; (3) hostile, including concerns that taxpayers would end up supporting the mother and child; (4) questioning woman's competence as a potential parent; (5) oblivious, not recognizing visible pregnancy or motherhood; and (6) positive. Many women reported strangers asking how their pregnancy had happened. The women doubted that visibly pregnant women without disabilities evoke the same reactions from strangers.Women with mobility disability who are visibly pregnant may perceive reactions from strangers that appear intrusive. Planning ahead for handling such encounters could reduce the stresses of these interactions.

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 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 The number of US women of childbearing age who have chronic physical disabilities (CPD) is increasing. However, little is known about their reproductive experiences. Historically, women with physical disabilities have confronted stigmatized attitudes about becoming pregnant. Objectives To explore the national prevalence of current pregnancy among women with and without CPD; examine differences in current pregnancy prevalence between these 2 groups of women. Research design Bivariable and multivariable analyses of cross-sectional, nationally representative National Health Interview Survey data from 2006 to 2011. Subjects Forty-seven thousand six hundred twenty-nine civilian, noninstitutionalized women aged 18-49 years. Measures National Health Interview Survey asks women ages 18-49 if they are currently pregnant; it also asks about various movement difficulties. We used responses from 8 movement difficulty and other questions to identify women with CPD. Results Six thousand forty-three (12.7%) sampled women report CPD. Compared with other women, women with CPD are significantly: older; more likely to be black and less likely to be Asian or Hispanic; more likely to be divorced or separated; more likely to have less than a high school education; less likely to be employed; and have much lower incomes. Across all women, 3.5% report being currently pregnant: 3.8% of women without CPD and 2.0% with CPD. Controlling for sociodemographic factors, the adjusted odds ratio (95% confidence interval) of current pregnancy is 0.83 (95% confidence interval, 0.65-1.05; P=0.12) for women with CPD compared with nondisabled women. Conclusions Women with CPD do become pregnant, and their numbers will likely grow. Obstetrical practitioners therefore require training about the special needs of these women.

Routine prenatal care includes physical examinations and weight measurement. Little is known about whether access barriers to medical diagnostic equipment, such as examination tables and weight scales, affect prenatal care among pregnant women with physical disabilities.We conducted 2-hour, in-depth telephone interviews with 22 women using a semistructured, open-ended interview protocol. All women had significant mobility difficulties before pregnancy and had delivered babies within the prior 10 years. We recruited most participants through social networks. We sorted interview transcript texts using used NVivo software and conducted conventional content analyses to identify major themes.Interviewee's mean (standard deviation) age was 34.8 (5.3) years. Most were white, well-educated, and higher income; 8 women had spinal cord injuries, 4 cerebral palsy, and 10 had other conditions; 18 used wheeled mobility aids. Some women's obstetricians had height adjustable examination tables, which facilitated transfers for physical examinations. Other women had difficulty transferring onto fixed height examination tables and were examined while sitting in their wheelchairs. Family members and/or clinical staff sometimes assisted with transfers; some women reported concerns about transfer safety. No women reported being routinely weighed on an accessible weight scale by their prenatal care clinicians. A few were never weighed during their pregnancies.Inaccessible examination tables and weight scales impede some pregnant women with physical disabilities from getting routine prenatal physical examinations and weight measurement. This represents substandard care. Adjustable height examination tables and wheelchair accessible weight scales could significantly improve care and comfort for pregnant women with physical disabilities.

Growing numbers of reproductive-age US women with chronic physical disabilities (CPD) raise questions about their pregnancy experiences. Little is known about the health risks of women with versus without CPD by current pregnancy status. We analyzed cross-sectional, nationally-representative National Health Interview Survey data from 2006 to 2011, which includes 47,629 civilian, noninstitutionalized women ages 18–49. NHIS asks about specified movement difficulties, current pregnancy, and various health and health risk indicators, including tobacco use and body mass index (BMI). We used responses from eight movement difficulty and other questions to identify women with mobility difficulties caused by chronic physical health conditions. Across all women regardless of CPD, women reporting current pregnancy are significantly less likely to currently smoke tobacco and report certain mental health problems. Among currently pregnant women only, women with CPD are more likely to smoke cigarettes every day (12.2 %) versus 6.3 % for pregnant women without CPD (p ≤ 0.001). Among currently pregnant women, 17.7 % of women with CPD have BMIs in the non-overweight range, compared with 40.1 % of women without CPD (p ≤ 0.0001). Currently pregnant women with CPD are significantly more likely to report having any mental health problems, 66.6 % compared with 29.7 % among women without CPD (p ≤ 0.0001). For all women, currently pregnant women appear to have fewer health risks and mental health concerns than nonpregnant women. Among pregnant women, women with CPD have higher rates than other women of health risk factors that could affect maternal and infant outcomes.

Objective Little is known about how functional impairments might affect the pregnancies of women with mobility disability. We aimed to explore complications that arise during pregnancy that are specifically related to physical functional impairments of women with significant mobility disabilities. Design Qualitative descriptive analysis. Setting Telephone interviews with women from 17 USA states. Sample 22 women with significant mobility difficulties who had delivered babies within the prior 10 years; most participants were recruited through social networks. Methods We conducted 2-h, in-depth telephone interviews using a semi-structured, open-ended interview protocol. We used NVIVO software to sort interview transcript texts for conventional content analyses. Main outcome measures Functional impairment-related complications during pregnancy. Results The women's mean (standard deviation) age was 34.8 (5.3) years. Most were white, well-educated, and higher income; eight women had spinal cord injuries, four cerebral palsy, and 10 had other conditions; 18 used wheeled mobility aids; and 14 had cesarean deliveries (eight elective). Impairment-related complications during pregnancy included: falls; urinary tract and bladder problems; wheelchair fit and stability problems that reduced mobility and compromised safety; significant shortness of breath, sometimes requiring respiratory support; increased spasticity; bowel management difficulties; and skin integrity problems (this was rare, but many women greatly increased skin monitoring during pregnancy to prevent pressure ulcers). Conclusions In addition to other pregnancy-associated health risks, women with mobility disabilities appear to experience problems relating to their functional impairments. Pre-conception planning and in-depth discussions during early pregnancy could potentially assist women with mobility disabilities to anticipate and address these difficulties.

Anecdotal evidence suggests that growing numbers of American women with chronic physical disabilities (CPD) are becoming pregnant.1 Recent analyses of national survey data found that approximately 163,700 U.S. women with CPD are pregnant at some point each year, including nearly 44,200 women reporting severe physical disabilities.2 In coming decades, the population of reproductive-age women with CPD will increase,3–6 likely resulting in rising numbers of pregnancies. Therefore, learning more about the obstetrical needs of women with CPD is critical. Here we define CPD as chronic functional impairments of upper or lower extremities that limit mobility. These functional impairments may themselves affect pregnancy outcomes. In addition, the health conditions causing the impairments might contribute to obstetrical risks. For example, during pregnancy, healthy women with spinal cord injury might need specific services (e.g., intensive monitoring of skin integrity in ischial areas), which differ from those of ambulatory pregnant women with multiple sclerosis initially taking powerful disease-modifying drugs. In anticipating their specific clinical needs, understanding the nature of disabling health problems among pregnant women with CPD is essential. Few data sets contain information on current pregnancy and women’s disabling health conditions. The federal, cross-sectional National Health Interview Survey (NHIS) includes self-reported “current” pregnancy, mobility-related functional limitations, and self-reported causes of these functional limitations. Using NHIS data, we address two primary research questions: (1) What are the self-reported causes of their functional impairments for reproductive-age U.S. women with CPD? (2) and What are the associations between these underling causes and current pregnancy among women with CPD? Although these data are only descriptive, they offer an important starting point for understanding potential clinical needs of pregnant women with CPD.