Experiences of distress and gaps in government safety net supports among parents of young children during the COVID-19 pandemic: a qualitative study.

BACKGROUND: The COVID-19 pandemic prompted rapid federal, state, and local government policymaking to buffer families from the health and economic harms of the pandemic. However, there has been little attention to families' perceptions of whether the pandemic safety net policy response was adequate, and what is needed to alleviate lasting effects on family well-being. This study examines the experiences and challenges of families with low incomes caring for young children during the pandemic. METHODS: Semi-structured qualitative interviews conducted from August 2020 to January 2021 with 34 parents of young children in California were analyzed using thematic analysis. RESULTS: We identified three key themes related to parents' experiences during the pandemic: (1) positive experiences with government support programs, (2) challenging experiences with government support programs, and (3) distress resulting from insufficient support for childcare disruptions. Participants reported that program expansions helped alleviate food insecurity, and those attending community colleges reported accessing a range of supports through supportive counselors. However, many reported gaps in support for childcare and distance learning, pre-existing housing instability, and parenting stressors. With insufficient supports, additional childcare and education workloads resulted in stress and exhaustion, guilt about competing demands, and stagnation of longer-term goals for economic and educational advancement. CONCLUSIONS: Families of young children, already facing housing and economic insecurity prior to the pandemic, experienced parental burnout. To support family well-being, participants endorsed policies to remove housing barriers, and expand childcare options to mitigate job loss and competing demands on parents. Policy responses that either alleviate stressors or bolster supports have the potential to prevent distress catalyzed by future disasters or the more common destabilizing experiences of economic insecurity.

Understanding Take-Up Of The Earned Income Tax Credit Among Californians With Low Income.

The Earned Income Tax Credit (EITC) is the largest poverty alleviation program for families with children in the US, and it has well-documented health effects. However, not all eligible families receive benefits. The Assessing California Communities' Experiences with Safety Net Supports (ACCESS) Study interviewed 411 EITC-eligible Californians with young children to understand low take-up of the federal EITC and California's supplemental CalEITC. Interviews were conducted in English and Spanish in 2020 and 2021 to gather information on sociodemographic characteristics, tax filing, and EITC receipt (verified via tax forms). Among those eligible for the EITC or CalEITC, 9 percent of participants did not file taxes; among those who did file taxes, about 84 percent received the EITC, and 83 percent received the CalEITC. Lower likelihood of federal EITC receipt among those eligible and filing taxes was associated with being younger, not speaking English, and not having prior knowledge of the EITC. Lower likelihood of CalEITC receipt among those eligible and filing taxes was associated with not speaking English. These findings can inform policies and community interventions to increase EITC take-up and thereby help address health equity.

Social and Economic Factors Related to Healthcare Delay Among Low-Income Families During COVID-19: Results from the ACCESS Observational Study.

Delayed medical care is a negative consequence of the COVID-19 pandemic for families with young children. Our study used data from the Accessing California Communities' Experiences with Safety net Supports (ACCESS) survey, a cross-sectional study that assessed experiences with safety-net programs among working families with low incomes (n=491). From August 2020 to May 2021, we conducted interviewer-administered surveys of low-income families with young children (ages zero to eight) in California and asked questions about whether participants had delayed medical care for their children or themselves. We found that delaying care for children was associated with lack of childcare and with the child having pre-existing conditions. Delaying parental medical care was associated with lack of childcare, experiences of racism, government mistrust, and perceptions of welfare stigma. These results suggest that health care access may be improved through a focus on supporting childcare systems and addressing structural racism.

Pandemic-related socioeconomic disruptions and adverse health outcomes: a cross-sectional study of female caregivers.

BACKGROUND: The COVID-19 pandemic and efforts to mitigate transmission resulted in sudden and widespread socioeconomic disruptions including school and child care closures, unemployment and underemployment, and housing precarity. Understanding the extent to which these disruptions may have contributed to adverse health outcomes is critical for establishing policy priorities that can mitigate further harm. METHODS: We explored the associations between pandemic-related child care, employment, and housing disruptions with depressive symptoms, self-rated health, and food security status among a sample of economically disadvantaged and racially diverse female caregivers of young children (n=464). Data were derived from the Assessing California Communities' Experiences with Safety Net Supports (ACCESS) study, which conducted survey-based interviews with California caregivers with low-income from August 2020 - May 2021. We implemented a series of multivariable Poisson regressions with robust standard errors to assess the potency of each exposure, independently and within the context of one another. RESULTS: Most caregivers experienced disruptions to child care (70%) and employment (63%); few experienced major housing disruptions (8%). Women that experienced child care and housing disruptions had greater depressive symptoms, lower self-rated health, and greater food insecurity, although the relationships for housing and depressive symptoms were modified by the timing of participants' interviews. Employment disruptions were not associated with any of the examined adverse health outcomes. CONCLUSION: In the wake of socioeconomic stressors brought about by the COVID-19 pandemic, attending to structural deficits in the child care system and increasing housing supports may be critical for protecting the health of caregivers.

Diagnostic Trajectories in Primary Care at 12 Months: An Observational Cohort Study.

BACKGROUND: Little is known about the epidemiology of diagnosis in primary care. METHODS: A prospective observational cohort study was conducted of adults presenting between August and December 2018 to primary care clinics across two health systems with an undiagnosed medical problem. Primary outcomes were (1) likelihood of a definitive diagnosis by 12 months and (2) time to diagnosis. Multivariate logistic regression was used to assess for factors associated with the likelihood of reaching a diagnosis, and multivariable Cox regression was used to assess for factors associated with time to diagnosis. Bivariate models were used to explore unadjusted relationships between the cases' organ systems and likelihood of and time to diagnosis. RESULTS: Among 410 cases in a diverse patient population, 206 (50.2%) reached a final diagnosis within 12 months, with a median time to diagnosis of 5 days (interquartile range = 0-46). Among these cases, 32.4% reached a diagnosis within the first month. A majority of cases not diagnosed within a month of the first presentation remained undiagnosed at 12 months. The likelihood of diagnosis and time to diagnosis did not differ by clinician or patient characteristics, clinicians' level of diagnostic uncertainty, chronicity of the medical issue, or visit type. There were no significant associations between organ system and likelihood of time to diagnosis. CONCLUSION: Patients presenting with new or unresolved problems in ambulatory primary care often remain undiagnosed after a year. There were no provider or patient-level variables associated with such lack of diagnosis. The causes, contributors, and consequences of lack of timely diagnosis and potential solutions require further research.

Cancer patient perspectives on survivorship goals from the Smart Patients online community.

BACKGROUND: Cancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers. PATIENTS AND METHODS: Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. RESULTS: Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. CONCLUSION: Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

Impact of digitally acquired peer diagnostic input on diagnostic confidence in outpatient cases: A pragmatic randomized trial.

OBJECTIVE: The study sought to evaluate if peer input on outpatient cases impacted diagnostic confidence. MATERIALS AND METHODS: This randomized trial of a peer input intervention occurred among 28 clinicians with case-level randomization. Encounters with diagnostic uncertainty were entered onto a digital platform to collect input from ≥5 clinicians. The primary outcome was diagnostic confidence. We used mixed-effects logistic regression analyses to assess for intervention impact on diagnostic confidence. RESULTS: Among the 509 cases (255 control; 254 intervention), the intervention did not impact confidence (odds ratio [OR], 1.46; 95% confidence interval [CI], 0.999-2.12), but after adjusting for clinician and case traits, the intervention was associated with higher confidence (OR, 1.53; 95% CI, 1.01-2.32). The intervention impact was greater in cases with high uncertainty (OR, 3.23; 95% CI, 1.09- 9.52). CONCLUSIONS: Peer input increased diagnostic confidence primarily in high-uncertainty cases, consistent with findings that clinicians desire input primarily in cases with continued uncertainty.

What Safety Events Are Reported For Ambulatory Care? Analysis of Incident Reports from a Patient Safety Organization.

INTRODUCTION: Health care staff document patient safety events using incident reporting systems, which are compiled within Patient Safety Organization databases. Researchers sought to describe the patterns and characteristics of incident reporting behaviors for ambulatory care from in-situ reporting systems from the United States. METHODS: The team analyzed safety reports in ambulatory settings collected from a Patient Safety Organization comprising 400 hospital members in 10 states, from May 2012 to October 2018. All events involving moderate harm, severe harm, and death were included, as well as subsamples of events with missing harm, no harm, and mild harm. The team deductively coded incident types and if patient or caregiver challenges were involved. A multivariate logistic regression was conducted to identify predictors of higher harm (severe harm and death) among safety events reported. RESULTS: Of 2,701 events, there were 51 deaths, 159 severe harm events, 1,180 moderate harm, 926 mild harm, 384 no harm, and 1 unknown. Most were from outpatient subspecialty care, while 5.2% were from home/community, and 2.1% were from primary care. Medication-related events were most common (45.3%). In multivariate analysis, diagnostic errors (adjusted odds ratio [aOR] 11.5), patient/caregiver challenges (aOR 2.2), and events in the home/community (aOR 2.0) and in psychiatric settings (aOR 5.0) were associated with higher harm. CONCLUSION: Outpatient reporting systems are limited for primary care and home/community settings, but ambulatory care systems report more harmful events related to diagnosis and patient and caregiver challenges. Improved standardization of reporting, focus on diagnosis, and novel approaches of safety reporting that engage patients will be necessary to improve capture of preventable events affecting patients and to develop system-level solutions.

Advancing Cancer Control in San Francisco: Cancer Screening in Under-Represented Populations.

INTRODUCTION: Cancer risk and screening data are limited in their ability to inform local interventions to reduce the burden of cancer in vulnerable populations. The San Francisco Health Information National Trends Survey was developed and administered to assess the use of cancer-related information among under-represented populations in San Francisco to provide baseline data for the San Francisco Cancer Initiative. METHODS: The survey instrument was developed through consultation with research and community partners and translated into 4 languages. Participants were recruited between May and September 2017 through community-based snowball sampling with quotas to ensure adequate numbers of under-represented populations. Chi-square tests and multivariate logistic regression were used between 2018 and 2019 to assess differences in screening rates across groups and factors associated with cancer screening. RESULTS: One thousand twenty-seven participants were recruited. Asians had lower rates of lifetime mammogram (p=0.02), Pap test (p<0.01), and prostate-specific antigen test (p=0.04) compared with non-Asians. Hispanics had higher rates of lifetime mammogram (p=0.02), lifetime Pap test (p=0.01), recent Pap test (p=0.03), and lifetime prostate-specific antigen test (p=0.04) compared with non-Hispanics. Being a female at birth was the only factor that was independently associated with cancer screening participation (AOR=3.17, 95% CI=1.40, 7.19). CONCLUSIONS: Screening adherence varied by race, ethnicity, and screening type. A collaborative, community-based approach led to a large, diverse sample and may serve as a model for recruiting diverse populations to add knowledge about cancer prevention preferences and behaviors. Results suggest targeted outreach efforts are needed to address disparate cancer screening behaviors within this diverse population.

Evaluation of a Health Information Technology-Enabled Collective Intelligence Platform to Improve Diagnosis in Primary Care and Urgent Care Settings: Protocol for a Pragmatic Randomized Controlled Trial.

BACKGROUND: Diagnostic error in ambulatory care, a frequent cause of preventable harm, may be mitigated using the collective intelligence of multiple clinicians. The National Academy of Medicine has identified enhanced clinician collaboration and digital tools as a means to improve the diagnostic process. OBJECTIVE: This study aims to assess the efficacy of a collective intelligence output to improve diagnostic confidence and accuracy in ambulatory care cases (from primary care and urgent care clinic visits) with diagnostic uncertainty. METHODS: This is a pragmatic randomized controlled trial of using collective intelligence in cases with diagnostic uncertainty from clinicians at primary care and urgent care clinics in 2 health care systems in San Francisco. Real-life cases, identified for having an element of diagnostic uncertainty, will be entered into a collective intelligence digital platform to acquire collective intelligence from at least 5 clinician contributors on the platform. Cases will be randomized to an intervention group (where clinicians will view the collective intelligence output) or control (where clinicians will not view the collective intelligence output). Clinicians will complete a postvisit questionnaire that assesses their diagnostic confidence for each case; in the intervention cases, clinicians will complete the questionnaire after reviewing the collective intelligence output for the case. Using logistic regression accounting for clinician clustering, we will compare the primary outcome of diagnostic confidence and the secondary outcome of time with diagnosis (the time it takes for a clinician to reach a diagnosis), for intervention versus control cases. We will also assess the usability and satisfaction with the digital tool using measures adapted from the Technology Acceptance Model and Net Promoter Score. RESULTS: We have recruited 32 out of our recruitment goal of 33 participants. This study is funded until May 2020 and is approved by the University of California San Francisco Institutional Review Board until January 2020. We have completed data collection as of June 2019 and will complete our proposed analysis by December 2019. CONCLUSIONS: This study will determine if the use of a digital platform for collective intelligence is acceptable, useful, and efficacious in improving diagnostic confidence and accuracy in outpatient cases with diagnostic uncertainty. If shown to be valuable in improving clinicians' diagnostic process, this type of digital tool may be one of the first innovations used for reducing diagnostic errors in outpatient care. The findings of this study may provide a path forward for improving the diagnostic process. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13151.

Health Information-seeking Behaviors and Preferences of a Diverse, Multilingual Urban Cohort.

INTRODUCTION: In order to address health disparities, it is important to understand how vulnerable individuals seek information. This study used an adapted version of the Health Information National Trends Survey (HINTS) administered in English, Spanish, and Chinese to describe the behaviors and preferences of a diverse group of vulnerable urban residents. METHODS: We administered a modified HINTS survey in English, Spanish, and Chinese and used purposive sampling to ensure 50% were non-English speakers evenly divided between Spanish and Chinese speakers, and 50% of English-speakers identified as Black. We used multivariable logistic regression to determine characteristics associated with sources used for health information and preferences for delivery of health information. RESULTS: Among 1027survey respondents (514 English, 256 Spanish, 260 Chinese), 55% had adequate health literacy, and 50% reported household income <$20,000, but 77% reported owning a smartphone. A plurality sought health information on the Internet (39%) or from a health care provider (36%). In multivariable analyses, smartphone ownership predicted higher odds of seeking health information on the Internet [odds ratio, (OR) 2.98; 95% confidence interval (CI), 1.81-4.91]. Participants most preferred email (41%) and brochures (40%) for delivery of health information, but non-English survey respondents were less likely to prefer email: Spanish (OR, 0.30; 95% CI, 0.11-0.83) and Chinese (OR, 0.25; 95% CI, 0.09-0.71). Smartphone ownership predicted an email preference (OR, 2.19; 95% CI, 1.43-3.36). CONCLUSIONS: Among vulnerable populations, smartphone ownership and language preferences impact preferences for seeking and receiving health information. These preferences need to be considered in designing health messages.

A Randomized Trial to Train Vulnerable Primary Care Patients to Use a Patient Portal.

BACKGROUND: Patient portals are becoming ubiquitous. Previous research has documented substantial barriers, especially among vulnerable patient subgroups such as those with lower socioeconomic status or limited health literacy (LHL). We tested the effectiveness of delivering online, video-based portal training to patients in a safety net setting. METHODS: We created an online video curriculum about accessing the San Francisco Health Network portal, and then randomized 93 English-speaking patients with 1+ chronic diseases to receive 1) an in-person tutorial with a research assistant, or 2) a link to view the videos on their own. We also examined a third, nonrandomized usual care comparison group. The primary outcome was portal log-in (yes/no) 3 to 6 months post-training, assessed via the electronic health record. Secondary outcomes were self-reported attitudes and skills collected via baseline and follow-up surveys. RESULTS: Mean age was 54 years, 51% had LHL, 60% were nonwhite, 52% were female, 45% reported fair/poor health, and 76% reported daily Internet use. At followup, 21% logged into the portal, with no differences by arm (P = .41), but this was higher than the overall clinic rate of 9% (P < .01) during the same time period. We found significant prepost improvements in self-rated portal skills (P = .03) and eHealth literacy (P < .01). Those with LHL were less likely to log in post-training (P < .01). CONCLUSIONS: Both modalities of online training were comparable, and neither mode enabled a majority of vulnerable patients to use portals, especially those with LHL. This suggests that portal training will need to be more intensive or portals need improved usability to meaningfully increase use among diverse patients.

Meaningful use in the safety net: a rapid ethnography of patient portal implementation at five community health centers in California.

OBJECTIVE: US health care institutions are implementing secure websites (patient portals) to achieve federal Meaningful Use (MU) certification. We sought to understand efforts to implement portals in "safety net" health care systems that provide services for low-income populations. MATERIALS AND METHODS: Our rapid ethnography involved visits at 4 California safety net health systems and in-depth interviews at a fifth. Visits included interviews with clinicians and executives ( n = 12), informal focus groups with front-line staff ( n = 35), observations of patient portal sign-up procedures and clinic work, review of marketing materials and portal use data, and a brief survey ( n = 45). RESULTS: Our findings demonstrate that the health systems devoted considerable effort to enlisting staff support for portal adoption and integrating portal-related work into clinic routines. Although all health systems had achieved, or were close to achieving, MU benchmarks, patients faced numerous barriers to portal use and our participants were uncertain how to achieve and sustain "meaningful use" as defined by and for their patients. DISCUSSION: Health systems' efforts to achieve MU certification united clinic staff under a shared ethos of improved quality of care. However, MU's assumptions about patients' demand for electronic access to health information and ability to make use of it directed clinics' attention to enrollment and message routing rather than to the relevance and usability of a tool that is minimally adaptable to the safety net context. CONCLUSION: We found a mismatch between MU-based metrics of patient engagement and the priorities and needs of safety net patient populations.

Online patient websites for electronic health record access among vulnerable populations: portals to nowhere?

OBJECTIVE: With the rapid rise in the adoption of patient portals, many patients are gaining access to their personal health information online for the first time. The objective of this study was to examine specific usability barriers to patient portal engagement among a diverse group of patients and caregivers. MATERIALS AND METHODS: We conducted interviews using performance testing and think-aloud methods with 23 patients and 2 caregivers as they first attempted to use features of a newly launched patient portal. RESULTS: In navigating the portal, participants experienced basic computer barriers (eg, difficulty using a mouse), routine computer barriers (eg, mistyping, navigation issues), reading/writing barriers, and medical content barriers. Compared to participants with adequate health literacy, participants with limited health literacy required 2 additional minutes to complete each task and were more likely to experience each type of navigational barrier. They also experienced more inaccuracies in interpreting a test result and finding a treatment plan within an after-visit summary. DISCUSSION: When using a patient portal for the first time, participants with limited health literacy completed fewer tasks unassisted, had a higher prevalence of encountering barriers, took longer to complete tasks, and had more problems accurately interpreting medical information. CONCLUSION: Our findings suggest a strong need for tailored and accessible training and support to assist all vulnerable patients and/or caregivers with portal registration and use. Measuring the health literacy of a patient population might serve as a strong proxy for identifying patients who need the most support in using health technologies.