An Ethically Supported Framework for Determining Patient Notification and Informed Consent Practices When Using Artificial Intelligence in Health Care.

Artificial intelligence (AI) is being used increasingly in health care, and without an ethically supportable, standard approach to knowing when patients should be informed about AI, hospital systems and clinicians run the risk of fostering mistrust among their patients and the public. Therefore, hospital leaders need guidance on when to tell patients about the use of AI in their care. In this article, we provide such guidance. To determine which AI technologies fall into each of the identified categories (no notification or no informed consent [IC], notification only, and formal IC), we propose that AI use-cases should be evaluated using the following criteria: (1) AI model autonomy, (2) departure from standards of practice, (3) whether the AI model is patient facing, (4) clinical risk introduced by the model, and (5) administrative burdens. We take each of these in turn, using a case example of AI in health care to illustrate our proposed framework. As AI becomes more commonplace in health care, our proposal may serve as a starting point for creating consensus on standards for notification and IC for the use of AI in patient care.

Reducing decisional conflict in decisions about prenatal genetic testing: the impact of a dyadic intervention at the start of prenatal care.

OBJECTIVES: Decisional conflict and regret about prenatal genetic screening and diagnostic tests may have important consequences in the current pregnancy and for future reproductive decisions. Identifying mechanisms that reduce conflict associated with the decision to use or decline these options is necessary for optimal patient counseling. METHODS: We conducted a cluster-randomized controlled trial of a shared decision-making tool (NEST) at the beginning of prenatal care. Enrolled patients completed follow-up surveys at the time of testing (QTT) and in the second-third trimester (QFF), including the Decision Conflict Scale (DCS). Total DCS scores were analyzed using a multivariate linear mixed-effect model. RESULTS: Of the total number of participants (n=502) enrolled, 449 completed the QTT and QFF surveys. The mean age of participants was 31.6±3.8, with most parous at the time of study participation (n=321; 71.7 %). Both the NEST (the intervention) and control groups had lower median total DCS scores at QFF (NEST 13.3 [1.7, 25.0] vs. control 16.7 [1.7, 25.0]; p=0.24) compared to QTT (NEST 20.8 [5.0, 25.0] vs. control 18.3 [3.3, 26.7]; p=0.89). Participants exposed to NEST had lower decisional conflict at QFF compared to control (ß -3.889; [CI -7.341, -0.437]; p=0.027). CONCLUSIONS: Using a shared decision-making tool at the start of prenatal care decreased decisional conflict regarding prenatal genetic testing. Such interventions have the potential to provide an important form of decision-making support for patients facing the unique type of complex and preference-based choices about the use of prenatal genetic tests.

Using Preanesthesia Clinic Visits to Improve Advance Directives Completion: An Interrupted Time Series Analysis.

BACKGROUND: Advance directives documentation can increase the likelihood that patient's wishes are respected if they become incapacitated. Unfortunately, completion rates are suboptimal overall, and disparities may exist, especially for vulnerable groups. We assessed whether implementing an initiative to standardize advance directives discussions during preanesthesia visits was associated with changes in rates of advance directives completion over time, and whether the association depends on race, insurance type, or income. METHODS: We conducted a before-after interrupted time series evaluation between January 1, 2015 and June 30, 2019 in a single-center, outpatient preanesthesia clinic. Participants were adults who visited the preanesthesia clinic at Cleveland Clinic and had >1 comorbidity before a noncardiac surgery of either medium or high risk. The intervention in March of 2017 consisted of training staff to help patients complete and witness advance directives documents during visits. We measured advance directives completion, by race, payor, and income (using the 2019 Federal Poverty Line). We assessed the confounder-adjusted association between intervention (pre versus post) and proportion of patients completing advanced directives over time using segmented regression to compare slopes between periods and assess changes at start of the intervention. We used similar models to assess whether changes depended on race, insurance type, or income level. RESULTS: We included 26,368 visits from 22,430 patients. We analyzed financial status for 16,788 visits from 14,274 patients who had address data. There were 11,242 (43%) visits preintervention and 15,126 (57%) visits postintervention. Crude completion rates for advance directives increased from 29% to 78%, with odds of completion an estimated 18 times higher than preintervention (odds ratio [95% CI] of 18 [16-21]; P < 0.001). Regarding race, Black patients had lower completion rates preintervention than White patients, although the gap steadily closed after the intervention ( P = .001). Postintervention, both race groups immediately increased, with no difference in amount of increase ( P = .17) or postintervention change in slope difference ( P = .17). Regarding insurance, patients with Medicaid had lower preintervention completion rates than those with private. Intervention was associated with increases in both groups, but the difference in slopes ( P = .43) or proportions ( P = .23) between the groups did not change after intervention. Regarding the Federal Poverty Line, the completion rate gap between those below (<100%) and above (139%-400%) narrowed by approximately half (0.51: 95% CI, 0.27-0.98; P = .04). CONCLUSIONS: Standardizing advance directives discussions during preanesthesia visits was associated with more patients completing advance directives, particularly in vulnerable patient groups.

Virtual prenatal visits associated with high measures of patient experience and satisfaction among average-risk patients: a prospective cohort study.

BACKGROUND: Virtual visits have the potential to decrease barriers to prenatal care stemming from transportation, work, and childcare concerns. However, data regarding patient experience and satisfaction with virtual visits remain limited in obstetrics. To address this gap, we explore average-risk pregnant women's experiences with virtual visits and compare satisfaction with virtual vs. in-person visits as a secondary aim. METHODS: In this IRB-approved, prospective cohort study, we surveyed pregnant women after their first virtual visit between October 7, 2019 and March 20, 2020. Using heterogeneous purposive sampling, we identified a subset of respondents with diverse experiences and opinions for interviews. For comparison, Consumer Assessment of Healthcare Providers and Systems (CAHPS) satisfaction data were collected after in-person visits during the study timeframe from a control cohort with the same prenatal providers. Logistic regression controlling for age, previous pregnancies, and prior live births compared satisfaction data between virtual and in-person visits. Other quantitative survey data were analyzed through descriptive statistics. Free text survey responses and interview data were analyzed using content analysis. RESULTS: Ninety five percent (n = 165/174) of surveys and 90% (n = 18/20) of interviews were completed. Most participants were Caucasian, married, and of middle to high income. 69% (114/165) agreed that their virtual appointment was as good as in-person; only 13% (21/165) disagreed. Almost all (148/165, 90%) would make another virtual appointment. Qualitative data highlighted ease of access, comparable provider-patient communication, confidence in care quality, and positive remote monitoring experiences. Recognizing these advantages but also inherent limitations, interviews emphasized interspersing telemedicine with in-person prenatal encounters. CAHPS responses after in-person visits were available for 60 patients. Logistic regression revealed no significant difference in three measures of satisfaction (p = 0.16, 0.09, 0.13) between virtual and in-person visits. CONCLUSIONS: In an average-risk population, virtual prenatal visits provide a patient-centered alternative to traditional in-person encounters with high measures of patient experience and no significant difference in satisfaction. Obstetric providers should explore telemedicine to improve access - and, during the ongoing pandemic, to minimize exposures - using patients' experiences for guidance. More research is needed regarding virtual visits' medical quality, integration into prenatal schedules, and provision of equitable care for diverse populations.

Impact of Telehealth on the Delivery of Prenatal Care During the COVID-19 Pandemic: Mixed Methods Study of the Barriers and Opportunities to Improve Health Care Communication in Discussions About Pregnancy and Prenatal Genetic Testing.

BACKGROUND: The COVID-19 pandemic brought significant changes in health care, specifically the accelerated use of telehealth. Given the unique aspects of prenatal care, it is important to understand the impact of telehealth on health care communication and quality, and patient satisfaction. This mixed methods study examined the challenges associated with the rapid and broad implementation of telehealth for prenatal care delivery during the pandemic. OBJECTIVE: In this study, we examined patients' perspectives, preferences, and experiences during the COVID-19 pandemic, with the aim of supporting the development of successful models to serve the needs of pregnant patients, obstetric providers, and health care systems during this time. METHODS: Pregnant patients who received outpatient prenatal care in Cleveland, Ohio participated in in-depth interviews and completed the Coronavirus Perinatal Experiences-Impact Survey (COPE-IS) between January and December 2021. Transcripts were coded using NVivo 12, and qualitative analysis was used, an approach consistent with the grounded theory. Quantitative data were summarized and integrated during analysis. RESULTS: Thematic saturation was achieved with 60 interviews. We learned that 58% (35/60) of women had telehealth experience prior to their current pregnancy. However, only 8% (5/60) of women had used both in-person and virtual visits during this pregnancy, while the majority (54/60, 90%) of women participated in only in-person visits. Among 59 women who responded to the COPE-IS, 59 (100%) felt very well supported by their provider, 31 (53%) were moderately to highly concerned about their child's health, and 17 (29%) reported that the single greatest stress of COVID-19 was its impact on their child. Lead themes focused on establishing patient-provider relationships that supported shared decision-making, accessing the information needed for shared decision-making, and using technology effectively to foster discussions during the COVID-19 pandemic. Key findings indicated that participants felt in-person visits were more personal, established greater rapport, and built better trust in the patient-provider relationship as compared to telehealth visits. Further, participants felt they could achieve a greater dialogue and ask more questions regarding time-sensitive information, including prenatal genetic testing information, through an in-person visit. Finally, privacy concerns arose if prenatal genetic testing or general pregnancy conversations were to take place outside of the health care facility. CONCLUSIONS: While telehealth was recognized as an option to ensure timely access to prenatal care during the COVID-19 pandemic, it also came with multiple challenges for the patient-provider relationship. These findings highlighted the barriers and opportunities to achieve effective and patient-centered communication with the continued integration of telehealth in prenatal care delivery. It is important to address the unique needs of this population during the pandemic and as health care increasingly adopts a telehealth model.

The Impact of Outpatient Prenatal Care Visitor Restrictions on Pregnant Patients and Partners During the COVID-19 Pandemic.

Introduction: During the early months of the COVID-19 pandemic, several health care facilities enacted visitor restrictions to help reduce the spread of SARS-CoV-2 among patients, front-line workers in health care systems, and communities. The impact and burden of policy updates on visitor restrictions put forth by the COVID-19 pandemic can be seen on patients and families, most often in the acute care setting and skilled nursing facilities. Yet, the effects of visitor restrictions in the prenatal care setting were unknown. We conducted a study to investigate the impact of these policies on pregnant patients who received outpatient prenatal care. Methods: We conducted a qualitative study to explore pregnant patients' experiences with prenatal health care delivery between May and July 2020. In-depth interviews were conducted with pregnant patients in the first and second trimester of pregnancy, who received their prenatal care at the onset of the pandemic in the United States. Results: Participants noted increased maternal concern, anxiety, and mental health concerns stemming from the lack of in-person partner support. They noted disappointment and lost experiences for the patient during pregnancy, seeking support from her partner during pregnancy, experiences felt to be critical for postpartum health and wellbeing. There was also concern about the negative impact of restrictions on prenatal care quality and experience. Conclusions: This study demonstrates the impact of visitor restrictions on patients' prenatal care experience and perception of health care quality during the COVID-19 pandemic. Future public health strategies should be individualized to different patient populations addressing knowledge, health literacy, and socioeconomic status, and developed in conjunction with pregnant patients as key stakeholders in the delivery of prenatal health care.

The Successes and Challenges of Implementing Telehealth for Diverse Patient Populations Requiring Prenatal Care During COVID-19: Qualitative Study.

BACKGROUND: Although telehealth appears to have been accepted among some obstetric populations before the COVID-19 pandemic, patients' receptivity and experience with the rapid conversion of this mode of health care delivery are unknown. OBJECTIVE: In this study, we examine patients' prenatal care needs, preferences, and experiences during the COVID-19 pandemic, with the aim of supporting the development of successful models to serve the needs of pregnant patients, obstetric providers, and health care systems during this time. METHODS: This study involved qualitative methods to explore pregnant patients' experiences with prenatal health care delivery at the onset of the COVID-19 pandemic. We conducted in-depth interviews with pregnant patients in the first and second trimester of pregnancy who received prenatal care in Cleveland, Ohio, from May to July 2020. An interview guide was used to probe experiences with health care delivery as it rapidly evolved at the onset of the pandemic. RESULTS: Although advantages of telehealth were noted, there were several concerns noted with the broad implementation of telehealth for prenatal care during the pandemic. This included concerns about monitoring the pregnancy at home; the need for additional reassurance for the pregnancy, given the uncertainties presented by the pandemic; and the ability to have effective patient-provider discussions via a telehealth visit. The need to tailor telehealth to prenatal health care delivery was noted. CONCLUSIONS: Although previous studies have demonstrated that telehealth is a flexible and convenient alternative for some prenatal appointments, our study suggests that there may be specific needs and concerns among the diverse patient groups using this modality during the pandemic. More research is needed to understand patients' experiences with telehealth during the pandemic and develop approaches that are responsive to the needs and preferences of patients.

Informed or anxious: patient preferences for release of test results of increasing sensitivity on electronic patient portals.

Worldwide, governments and healthcare systems are moving towards increased transparency to improve care quality, increase patient engagement, and decrease costs. For example, the American 21st Century Cures Act Final Rule requires providers to grant patients access to their electronic medical record. Unfortunately, limited research guides release of test results to online patient portals, especially concerning emotionally sensitive information. To address this gap, we surveyed the largest patient sample published to date. This cross-sectional survey project was conducted by the Market Research & Insights and Office of Patient Experience departments at a large academic medical center. Data were analyzed in SPSS using descriptive statistics and Z-tests. Of 8030 respondents, 74% and 57% accepted first learning their results online for cholesterol and strep throat tests, respectively. Most prefer in-person appointments for more serious tests detecting cancer (54%) and fetal miscarriage (53%). Excluding sexually transmitted disease (STD) testing, there are no clinically significant differences in preference between respondents previously diagnosed with the condition in question and respondents without such experience. When weighing the possibility of a 3-week wait to hear from their provider, most patients want automatic release of cholesterol (94%), strep throat (90%), genetic (68%), and STD (60%) test results, but the majority say it is unacceptable to receive Alzheimer's (52%), fetal miscarriage (51%), and cancer (59%) test results this way. Electronic results release is acceptable for less serious tests, but not for more consequential tests. Providers should consider patient preferences when developing policies to increase healthcare transparency. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12553-021-00628-5.

Use of Direct-to-Consumer Telemedicine to Access Mental Health Services.

BACKGROUND: The coronavirus disease 2019 pandemic has contributed to growing demand for mental health services, but patients face significant barriers to accessing care. Direct-to-consumer(DTC) telemedicine has been proposed as one way to increase access, yet little is known about its pre-pandemic use for mental healthcare. OBJECTIVE: To characterize patients, providers, and their use of a large nationwide DTC telemedicine platform for mental healthcare. DESIGN: Retrospective cross-sectional study. SETTING: Mental health encounters conducted on the American Well DTC telemedicine platform from 2016 to 2018. PARTICIPANTS: Patients and physicians. MAIN MEASURES: Patient measures included demographics, insurance report, and number of visits. Provider characteristics included specialty, region, and number of encounters. Encounter measures included wait time, visit length and timing, out-of-pocket payment, coupon use, prescription outcome, referral receipt, where care otherwise would have been sought, and patient satisfaction. Factors associated with five-star physician ratings and prescription receipt were assessed using logistic regression. KEY RESULTS: We analyzed 19,270 mental health encounters between 6708 patients and 1045 providers. Visits were most frequently for anxiety (39.1%) or depression (32.5%), with high satisfaction (4.9/5) across conditions. Patients had a median 2.0 visits for psychiatry (IQR 1.0-3.0) and therapy (IQR 1.0-5.0), compared to 1.0 visit (IQR 1.0-1.0) for urgent care. High satisfaction was positively correlated with prescription receipt (OR 1.89, 95% CI 1.54-2.32) and after-hours timing (aOR 1.18, 95% CI 1.02-1.36). Prescription rates ranged from 79.6% for depression to 32.2% for substance use disorders. Prescription receipt was associated with increased visit frequency (aOR 1.95, 95% CI 1.57-2.42 for ≥ 3 visits). CONCLUSIONS: As the burden of psychiatric disease grows, DTC telemedicine offers one solution for extending access to mental healthcare. While most encounters were one-off, evidence of some continuity in psychiatry and therapy visits-as well as overall high patient satisfaction-suggests potential for broader DTC telemental health use.

Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?

BACKGROUND: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient's preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. METHODS: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. RESULTS: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. CONCLUSION: Patients' baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients' decision-making commensurate with advances in prenatal genomics.

Ophthalmology Provider Ratings and Patient, Disease, and Appointment Factors.

The purpose of the current study is to examine how nonmodifiable sociodemographic, disease, appointment, management, and survey factors correlate with provider rating. This was a retrospective cross-sectional study conducted on 29 857 patient Clinician and Group Consumer Assessment of Healthcare Providers and Systems surveys collected from January 2017 to January 2019 at a tertiary eye center. We included surveys of patients aged 18 years or older, who answered at least 4 of 6 subfield questions, and completed the survey within 90 days of the appointment. The main outcome was the odds of receiving top box score (TBS) of 10/10 on the survey question regarding overall provider rating. The results showed that the variables with higher odds of TBS included higher overall appointment attendance (odds ratio [OR]: 2.66 [95% CI: 1.23-5.75], P = .013); older patient age (OR 2.44 [95% CI: 2.08-2.87], P < .001]; higher percentage of survey questions completed (OR: 2.02 [95% CI: 1.79-2.27], P < .001); better best corrected visual acuity (OR: 1.85 [95% CI: 1.3-2.64], P = .001); optometry clinic visit (OR: 1.25 [95% CI: 1.15-1.36], P < .001); having procedures (OR: 1.19 [95% CI: 1.04-1.36], P = .013), surgery scheduled (OR: 1.18 [95% CI: 1.03-1.36], P = .020], or refraction done (OR: 1.16 [95% CI: 1.08-1.25], P < .001); being seen by male providers (OR: 1.11 [95% CI: 1.04-1.17], P = .001); and having additional eye testing performed (OR: 1.06 [95% CI: 1.00-1.13], P = .048). Variables associated with lower odds of TBS included longer time to complete survey (OR: 0.42 [95% CI: 0.3-0.58], P = .001); new patient encounter (OR: 0.62 [95% CI: 0.58-0.65], P < .001); and glaucoma (OR: 0.66 [95% CI: 0.59-0.75], P < .001), cornea (OR: 0.79 [95% CI: 0.71-0.87], P < .001), or comprehensive clinic visits (OR: 0.86 [95% CI: 0.79-0.94], P < .001). Thus, nonmodifiable factors may affect the provider rating, and these factors should be studied further and accounted for when interpreting the results of patient experience surveys.

Categorizing and Rating Patient Complaints: An Innovative Approach to Improve Patient Experience.

The Ombudsman Office at a large academic medical center created a standardized approach to manage and measure unsolicited patient complaints, including methods to identify longitudinal improvements, accounting for volume variances, as well as incident severity to prioritize response needs. Data on patient complaints and grievances are collected and categorized by type of issue, unit location, severity, and individual employee involved. In addition to granular data, results are collated into meaningful monthly leadership reports to identify opportunities for improvement. An overall benchmark for improvement is also applied based on the number of complaints and grievances received for every 1000 patient encounters. Results are utilized in conjunction with satisfaction survey results to drive patient experience strategies. By applying benchmarks to patient grievances, targets can be created based on historical performance. The utilization of grievance and complaint benchmarking helps prioritize resources to improve patient experiences.

Patient Experience in Virtual Visits Hinges on Technology and the Patient-Clinician Relationship: A Large Survey Study With Open-ended Questions.

BACKGROUND: Patient satisfaction with in-person medical visits includes patient-clinician engagement. However, communication, empathy, and other relationship-centered care measures in virtual visits have not been adequately investigated. OBJECTIVE: This study aims to comprehensively consider patient experience, including relationship-centered care measures, to assess patient satisfaction during virtual visits. METHODS: We conducted a large survey study with open-ended questions to comprehensively assess patients' experiences with virtual visits in a diverse patient population. Adults with a virtual visit between June 21, 2017, and July 12, 2017, were invited to complete a survey of 21 Likert-scale items and textboxes for comments following their visit. Factor analysis of the survey items revealed three factors: experience with technology, patient-clinician engagement, and overall satisfaction. Multivariable logistic regression was used to test the associations among the three factors and patient demographics, clinician type, and prior relationship with the clinician. Using qualitative framework analysis, we identified recurrent themes in survey comments, quantitatively coded comments, and computed descriptive statistics of the coded comments. RESULTS: A total of 65.7% (426/648) of the patients completed the survey; 64.1% (273/426) of the respondents were women, and the average age was 46 (range 18-86) years. The sample was geographically diverse: 70.2% (299/426) from Ohio, 6.8% (29/426) from Florida, 4.2% (18/426) from Pennsylvania, and 18.7% (80/426) from other states. With regard to insurance coverage, 57.5% (245/426) were undetermined, 23.7% (101/426) had the hospital's employee health insurance, and 18.7% (80/426) had other private insurance. Types of virtual visits and clinicians varied. Overall, 58.4% (249/426) of patients had an on-demand visit, whereas 41.5% (177/426) had a scheduled visit. A total of 41.8% (178/426) of patients had a virtual visit with a family physician, 20.9% (89/426) with an advanced practice provider, and the rest had a visit with a specialist. Most patients (393/423, 92.9%) agreed that their virtual visit clinician was interested in them as a person, and their virtual visit made it easy to get the care they needed (383/421, 90.9%). A total of 81.9% (344/420) of respondents agreed or strongly agreed that their virtual visit was as good as an in-person visit by a clinician. Having a prior relationship with their virtual visit clinician was associated with less comfort and ease with virtual technology among patients (odds ratio 0.58, 95% CI 0.35-0.98). In terms of technology, patients found the interface easy to use (392/423, 92.7%) and felt comfortable using it (401/423, 94.8%). Technical difficulties were associated with lower odds of overall satisfaction (odds ratio 0.46, 95% CI 0.28-0.76). CONCLUSIONS: Patient-clinician engagement in virtual visits was comparable with in-person visits. This study supports the value and acceptance of virtual visits. Evaluations of virtual visits should include assessments of technology and patient-clinician engagement, as both are likely to influence patient satisfaction.

Incorporating Stakeholder Perspectives on Scarce Resource Allocation: Lessons Learned from Policymaking in a Time of Crisis.

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work.

The impact of the emergence of COVID-19 on women's prenatal genetic testing decisions.

OBJECTIVE: We conducted a study to examine the impact of COVID on patients' access and utilization of prenatal genetic screens and diagnostic tests at the onset of the COVID-19 pandemic in the United States. METHODS: We conducted telephone interviews with 40 patients to examine how the pandemic affected prenatal genetic screening and diagnostic testing decisions during the initial months of the pandemic in the United States. An interview guide queried experiences with the ability to access information about prenatal genetic testing options and to utilize the tests when desired. Audio recordings were transcribed and coded using NVivo 12. Analysis was conducted using Grounded Theory. RESULTS: The pandemic did not alter most participants' decisions to undergo prenatal genetic testing. Yet, it did impact how participants viewed the risks and benefits of testing and timing of testing. There was heightened anxiety among those who underwent testing, stemming from the risk of viral exposure and the fear of being alone if pregnancy loss or fetal abnormality was identified at the time of an ultrasound-based procedure. CONCLUSION: The pandemic may impact patients' access and utilization of prenatal genetic tests. More research is needed to determine how best to meet pregnant patients' decision-making needs during this time.

Patient-reported experience with patient-reported outcome measures in adult patients seen in rheumatology clinics.

OBJECTIVES: Patient-reported outcome measures (PROMs) are increasingly utilized in the evaluation of patients with rheumatic diseases. The aim of our study was to assess the patient experience with completing PROMs within rheumatology clinics, and identify patient characteristics associated with a more positive experience. METHODS: We conducted a retrospective cross-sectional study of adult patients seen in rheumatology clinics between 1/1/2017 and 6/30/2017. Patients were included in the study if they completed at least one patient-reported experience question following completion of PROMs. Patient characteristics associated with more positive experiences were identified through multivariable proportional odds models. RESULTS: 12,597 adult patients (mean age 59 ± 15; 76% female; 84% white) completed PROMs, as well as questions on their experience completing PROMs. Patients agreed/strongly agreed that PROM questions were easy to understand (97%), useful (84%), helped their physician understand their health (78%), improved communication with their provider (78%) and improved control over their own care (70%). Predictors of better experience with PROMs included being younger, non-white, having lower income, and being a new patient. Worse self-reported health also predicted better experience with PROMs. CONCLUSION: Our study found a positive patient experience with PROMs, which is a crucial component of their successful implementation and utilization. Findings from this study suggest PROMs may be particularly beneficial in new patients, minorities, those with lower income, and worse self-reported quality of life. Collecting PROMs could provide opportunities to improve patient-provider communication and enhance control over care for rheumatology patients who could most benefit.

The influence of collecting patient-reported outcome measures on visit satisfaction in rheumatology clinics.

OBJECTIVES: Patient-reported outcome measures (PROMs) can direct patient-centred care and increase patient satisfaction with the visit. The objective of this study was to assess the relationship between the collection of PROMs and visit satisfaction, as measured by the Clinician and Group Practice Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) survey. METHODS: An electronic platform for collection of patient-reported information was implemented in rheumatology clinics between August and September 2016. Adult patients were included in the study if they completed CG-CAHPS after an ambulatory visit. The pre-implementation cohort consisted of patients seen between January and June 2016; the post-implementation cohort consisted of patients seen between January and June 2017. The CG-CAHPS scores were compared between cohorts. Mixed effect models were constructed to identify predictors of visit satisfaction. RESULTS: Characteristics were similar between the 2117 pre- and 2380 post-implementation patients. Visit satisfaction was high in both cohorts but did not differ [odds ratio = 0.97 (95% CI: 0.79, 1.19)]. Predictors of improved satisfaction included being an established patient, being male, older age and reporting higher quality of life. However, sensitivity analyses in the post-implementation cohort suggested that implementing PROMs might convey benefits for new patients, in particular. CONCLUSION: Collection of PROMs had no effect on visit satisfaction in rheumatology clinics, although there might be benefits for new patients. These largely null findings might be attributable to high satisfaction levels in our cohorts or to lack of provider review of PROM data with patients. Further research is indicated to determine the impact of provider communication of PROM results to patients on different domains of visit satisfaction.

Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes.

BACKGROUND: In order to provide patient center care, our multiple sclerosis (MS) clinic assesses patient concerns before clinical encounters, first by asking the optional qualitative question "What is the most important thing you what your health-care provider to know today" (most important concern of the patient [MIPC]) and then completing quantitative patient-reported outcome measures (PROMs) including Quality of Life in Neurological Disorders (Neuro-QoL). Both sets of questions are designed to facilitate encounters that address patients' values and preferences. OBJECTIVE: Determine whether the qualitative MIPC responses provided unique information not included in PROMs or clinical assessments. METHODS: We randomly selected 400 first-time MIPC responders and 400 first-time MIPC nonresponders from 2788 participants in our database. We categorized MIPC responses by content and number of unique concerns and appended them to the Neuro-QoL framework. Nonresponders were compared to those who provided 1 and 2 or more responses. RESULTS: Several MIPCs MS symptoms categories were added to the Neuro-QoL Physical domain. Most important concern of the patients work and cost-of-care categories were added to the Social Domain. Domains regarding treatment satisfaction and disease management were added. Two hundred thirty (58%) MIPC respondents reported 1 concern, 140 (35%) expressed 2 to 6 concerns, and 30 (7%) reported MS-unrelated concerns and not analyzed. Physical symptoms were the most common MIPC (69.9%). Respondents with more concerns were more likely African American, lacked private insurance, and worse disability. CONCLUSIONS: Importantly, MIPC responders described idiosyncratic symptoms, disease management, and social concerns not included in the PROMS, suggesting the MIPC question offered patients a unique opportunity to share specific concerns with their providers.