Patient Experience Survey Research Articles

Five-year retrospective analysis of Bakri balloon tamponade for obstetric haemorrhage and patient survey at a single tertiary centre.

Intrauterine balloon tamponade (IUBT), specifically the usage of Bakri balloon tamponade (BBT), is an effective conservative management technique for postpartum haemorrhage (PPH). The primary objective was to evaluate local guidelines and contribute to evidence regarding ideal duration for BBT. The secondary objectives were to consider impacts on maternal-foetal wellbeing, and optimise healthcare efficiency by reducing length of ICU admissions. This five-year retrospective case series analysed 132 cases of obstetric ICU admissions requiring Bakri balloon insertion for PPH within our centre. Additionally, a prospective patient experience survey was conducted over six-month period, involving 22 obstetric patients who required unplanned ICU admissions. Bakri balloon insertion was successful in 95%, whilst 5% experienced failure, necessitating further interventions (uterine artery embolisation) or return to theatre (hysterectomy). The success group demonstrated significant reductions in median blood loss (1.8 L vs. 2.5 L, p = 0.016) and difference in median duration of BBT (18.3 vs. 3.92 hours, p = 0.001). The prospective patient survey revealed a high level of satisfaction of care. Approximately 50% breastfed prior to discharge, on average commencing 23.4 hours post-delivery. This study demonstrates a high success rate of BBT, with failures typically occurring within median duration 3.9 hours. Considering the separation of mother from baby during the Bakri balloon's presence in ICU, we propose timely removal at around six hours, as failures are unlikely post this timeframe, or nursing these women in a neonatal care setting to facilitate earlier mother-baby bonding.

Telemedicine in Pediatric Neurology: A Survey of Patient and Provider Experience.

Over recent years there has been a shift in clinical practice to support care delivery via telemedicine. This study aims to highlight the patient and provider experience of telemedicine over 2.5 years within a Canadian Pediatric Neurology clinic. A REDCap survey was sent to all patients/parents and providers with a telemedicine appointment between March 2020 and September 2022. Seven providers and 272 patients responded. Ninety-one percent of patients and 100% of providers were satisfied with telemedicine. Ninety percent of patients and 100% of providers found telemedicine more convenient. Eighty-seven percent of patients and 100% of providers were interested in future telemedicine appointments. Main challenges were with performing a physical examination and technological issues. Our survey shows that the majority of patients and providers had highly positive experiences with telemedicine and were interested in continuing care via telemedicine. This study supports incorporating telemedicine into future pediatric neurology practice.

National surveys of patient experiences with addiction services in Norway: do employees use the results in quality initiatives and are results improving over time?

IntroductionThe experiences of patients receiving health care constitute an important aspect of health-care quality assessments. One of the purposes of the national program of patient-experience surveys in Norway is to support institutional and departmental improvements to the quality of local health-care services. This program includes national surveys of patients receiving interdisciplinary treatment for substance dependence performed four times between 2013 and 2017. The aims of this study were twofold: (i) to determine the attitudes of employees towards these surveys and their use of the survey results, and (ii) to identify changes in patient experiences at the national level from 2013 to 2017.Material and methodsEmployees were surveyed one week prior to conducting cross-sectional patient experience surveys. One-way ANOVA and chi-square tests were used to assess differences between years, and content analysis was applied to the open-ended comments.ResultsAround 400 employees were recruited in each of the four survey years, and the response rate varied from 61% to 79%. The employees generally reported a positive attitude towards patient-experience surveys, and 40%–50% of them had implemented quality initiatives based on the results of the patient surveys. The mean score for the question on usefulness was higher than 3 (on a Likert scale from 1 to 5 points) for all four surveys. Many employees provided details about the changes that had been made in open-ended comments. The results from the patient-experience surveys demonstrated positive changes over time.DiscussionThe employees had positive viewpoints towards patient-experience surveys, and around half of them had implemented quality initiatives. This implies that employees find such surveys important, and that patient-experience surveys are regarded as useful and actionable. The surveys of patients showed positive changes in their experiences over time. The most-common target areas reported by employees showed clear improvements in patient experiences at the national level.

Bowel cancer diagnosis experiences as a predictor of overall care rating: evidence from the English Cancer Patient Experience Survey

ObjectiveTo investigate whether and which negative diagnosis-related experiences of patients newly diagnosed with colorectal cancer (CRC) are associated with a poorer overall rating of care, to help prioritise interventions.MethodsA secondary...

A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs.

Alternative funding programs (AFPs) seek to reduce health plan sponsor costs, for example by excluding specialty drugs from a beneficiary's plan coverage and requiring patients to obtain medications through alternative sources (typically, the manufacturer's patient assistance programs) via an AFP vendor as a third-party. To describe patients' experiences and specialty medication access with AFPs. A survey method consisting of 26 optional single-choice and multiple-choice questions with branching logic divided across 5 sections (related to patient challenges with AFPs) was administered to patients recruited from an experienced AFP online patient panel and a patient advocacy group. The survey assessed patients' awareness of AFPs from their employers, experience with the patient assistance program application process via the AFP vendor, timeliness of medication access (if granted), and/or the health impact of delay in access. All descriptive and exploratory subgroup analyses were conducted by disease area and reported income levels; statistical analyses were carried out for the exploratory analyses. The final sample included 227 patients. Most patients (61% [136/223]) first heard of the AFP as part of their health benefit when trying to obtain their medication. Of 198 patients, 88% reported being stressed because of the medication coverage denial and the uncertainty of obtaining their medication. More than half of patients (54% [115/213]) reported being uncomfortable with the benefits manager from the AFP vendor. On average, patients reported waiting to receive their medication for 68.2 days (approximately 2 months); 24% (51/215) reported the wait for the medication worsened their condition and 64% (138/215) reported the wait led to stress and/or anxiety. Patients who indicated the wait time negatively affected them had considered a job change or left their job at a 3-5-fold higher rate than those who reported no impact from wait time. A significantly higher proportion of patients with hemophilia and other bleeding disorders reported receiving their prescribed medication less often than patients with other conditions (63% [19/30] vs 81% [52/64]; P = 0.022), whereas more patients with lower incomes (<$50,000 vs >$50,000) reported not receiving any medication (12% [7/57] vs 5% [7/129]; P = 0.657), although these differences were not significant. Most patients who obtain their specialty medicines via AFPs reported being uncomfortable with the process and experiencing treatment delays, which may have been linked to disease progression, worsened mental well-being, and consideration of a job change. Employers should be aware of the potential downstream impacts on employee health, retention, and the employee-employer relationship when considering implementing an AFP into their health plan.

Using the Candidacy Framework to understand individual, interpersonal, and system level factors driving inequities in women with breast cancer: a cross-sectional study

BackgroundPersistent inequities in breast cancer outcomes exist. Understanding women’s experiences along the care pathway is the first step to finding solutions to tackle these inequities.MethodsSecondary data analysis of the 2017/2018 English National Cancer Patient Experience Survey (n = 25,408) using logistic regression to explore inequities in care experience by sociodemographic factors (age, ethnicity, socioeconomic position, sexual orientation) across 59 survey questions. We used the Candidacy Framework to interpret and organise our findings.ResultsCompared to older (65–74) and White British women, young (35-44, OR = 0.55 [0.44, 0.69]), Asian (OR = 0.52 [0.41, 0.67]), Black (OR = 0.67 [0.46, 0.97]) and White Other (OR = 0.63 [0.49, 0.81]) women were more likely to rate their overall care experience less positively, respectively. Similar findings were observed along all domains of the cancer pathway. Through a candidacy lens, we identified multilevel factors related to this variation including prolonged help-seeking behaviours (individual), poor patient-provider communication (interpersonal), and variation in access to healthcare professionals and resources (system level).ConclusionMultilevel factors influence inequities in the experience of care along the breast cancer pathway for young women and women from minoritised groups. Interventions are necessary to ensure cancer care systems are responsive to women’s health needs and provide equity of care to all patients.

Cost barriers to medication access in Australia: an analysis of the Patient Experience Survey incontext.

Cost barriers to medication access in Australia: an analysis of the Patient Experience Survey incontext.

EP.16B.02 Lung Cancer Patients' Preferred Methods of Receiving Information from their Treatment Teams: Insights from a Global Patient Experience Survey

EP.16B.02 Lung Cancer Patients' Preferred Methods of Receiving Information from their Treatment Teams: Insights from a Global Patient Experience Survey

Use of Telemedicine in a Sports Medicine Clinic: An Investigation of Patient Satisfaction

Objective: Compare patient satisfaction between telemedicine and in-office visits and between providers post-operatively in an orthopedics setting with athletic trainers and physicians. Design: Cross-sectional study Methods: Patients from a Sports Medicine Clinic that received an orthopedic surgical intervention from March 2020-September 2021, and engaged in telemedicine, or an in-office visit post-operatively. Provider type included full-time athletic trainers, resident athletic trainers, physician (MD) resident/fellows, and float athletic trainers. Press-Ganey Patient Experience Surveys were collected at the time of follow up visit, with focus on items, “likelihood to recommend” and “how well staff worked together.” Results: There was a total of 255 patients (age=50±17 years). Providers included the attending physician with full-time athletic trainers (n=134, 52.3%), resident athletic trainers (n=77, 30.1%), MD residents/fellows (n=38, 14.8%), or float athletic trainers (n=6, 2.3%). No significant difference was found with patient satisfaction between in-office (n=175, 68.4%), or telemedicine visits (n=80, 31.3%), (p&gt;.44). Patients were more satisfied with care provided by the full-time athletic trainers compared to MD residents/fellows (p.18). Conclusions: This study demonstrates no significant differences with patient satisfaction between in-office or telemedicine visits. Patients seeing full-time athletic trainers had the highest patient satisfaction, demonstrating the capability of athletic trainers to effectively use telemedicine in a physician practice.

Patient Experiences With Hospitalization Due to Diabetes in Alberta, Canada: A Cohort Study Using Survey and Administrative Data

ObjectivesIndividuals living with diabetes are often hospitalized. Despite this, little is known about their experiences with hospital care. In this study we examined the comprehensive experiences of patients hospitalized due to diabetes in Alberta, Canada, and compared them with those of patients hospitalized for other chronic conditions. MethodsWe conducted a retrospective cohort study that linked survey data with inpatient records. Survey data were collected using the Canadian Patient Experiences Survey–Inpatient Care (CPES-IC) instrument. Results from 37 questions were classified as percent in “top box,” which reflects the most positive answer choice. We also examined the association between overall experience and demographic and clinical factors among those living with diabetes. ResultsOver a 7-year period, 12,593 surveys (2,288 with diabetes and 10,305 other chronic conditions) were obtained. Patients hospitalized due to diabetes had lower “top-box” scores on 24 questions, higher scores on 3 questions, and the remaining 10 questions showed no difference between groups. Those hospitalized due to diabetes indicated potential areas for improvement. These included receiving information about their condition and about the admission process, the nighttime quietness of their hospital room, being informed about possible side effects of new medications, and pain control. Overall experience was also shown to vary according to demographic and clinical factors. ConclusionsWe found that individuals hospitalized due to diabetes reported lower experience scores than those hospitalized due to other chronic conditions. Our findings may be used to develop strategies to improve the patient experience among this cohort.

Development and implementation of a digital remote symptom monitoring program (RESPONSe) to support patients undergoing IV chemotherapy at a community ambulatory cancer clinic in Richmond, BC, Canada.

406 Background: We identified delays in accessing symptom management during treatment as an existing care gap at the Richmond Cancer Clinic. Patient-reported outcome measures (PROMs) have been demonstrated to communication, quality of life, and reduce symptom burden and acute care utilization. The RESPONSe program was initiated to address this gap by implementing a digital remote symptom monitoring (RSM) system paired with a supporting Symptom Management Nurse (SMN). Methods: We designed a digital RSM system to collect PROMs at specific timepoints during the first 6 months of IV chemotherapy initiation, with automated triaging logic to flag symptoms of concern that would result in a phone call from the SMN. Routine surveys include baseline, health-checks on days 3 and 10 post-chemotherapy, and pre-doctor’s-appointment; with optional health checks available anytime. Through competitive procurement, SeamlessMD was selected as the technology partner. From Aug 2023 to Jan 2024, multiple design cycles with dry run testing were held to incorporate branching logic, COSTARS oncology symptom specific questionnaires, automatic triaging flags, immediate self—management tips and links to educational resources. Concurrent development of SMN clinical workflows included in-person patient enrolment, digital dashboard monitoring and integration with the clinical chart. Results: From Jan 22-Apr 30, 2024, 32 patients have been enrolled with 42% over the age of 70. 90% of patients completed the baseline survey, 79% of patients completed at least 1 post-treatment health check and 45% completed at least 1 pre-doctors’-appointment survey. An average of 22 library resources were accessed per patient. Through the system, 19 severe and 34 moderate symptoms were identified. The dashboard prompted 63 telephone calls from the SMN, with a further 28 follow-up calls required. Early 3-month patient experience surveys (n=8) indicate high satisfaction, with 100% of patients saying they would recommend the program to others undergoing treatment. 87.5% of patients felt the system was very helpful in communicating their issues to the clinical team, with 100% reporting very high/extreme satisfaction with the support provided by the SMN. Additionally, 67% of patients felt very satisfied with the RESPONSe program overall. Conclusions: The RESPONSe program demonstrates the potential of digital RSM systems in improving patient-centered care and assisting with symptom reporting and management. Initial results suggest high engagement and patient satisfaction, showing this is a feasible approach in community oncology settings. We will be reviewing acute care utilization to assess the impact of the RESPONSe program on emergency room visits and hospitalization.

EP.16F.03 Lung Cancer Patients' Preferred Methods of Involvement with their Treatment Teams: Insights from a Global Patient Experience Survey

EP.16F.03 Lung Cancer Patients' Preferred Methods of Involvement with their Treatment Teams: Insights from a Global Patient Experience Survey

Assessing the Response Results of an mHealth-Based Patient Experience Survey Among People Receiving HIV Care in Lusaka, Zambia: Cohort Study.

This pilot study evaluates the effectiveness of mobile talk-time incentives in maintaining participation in a longitudinal mobile health (mHealth) data collection program among people living with HIV in Lusaka, Zambia. While mHealth tools, such as mobile phone surveys, provide vital health feedback, optimal incentive strategies to ensure long-term engagement remain limited. This study explores how different incentive levels affect response rates in multiple survey rounds, providing insights into effective methods for encouraging ongoing participation, especially in the context of Zambia's prepaid mobile system and multi-SIM usage, a common practice in sub-Saharan Africa. This study aimed to assess the response rate success across multiple invitations to participate in a care experience survey using a mobile phone short codes and unstructured supplementary service data (USSD) model among individuals in an HIV care setting in the Lusaka, Zambia. Participants were recruited from 2 study clinics-1 in a periurban setting and 1 in an urban setting. A total of 2 rounds of survey invitations were sent to study participants on a 3-month interval between November 1, 2018, and September 23, 2019. Overall, 3 incentive levels were randomly assigned by participant and survey round: (1) no incentive, (2) 2 Zambian Kwacha (ZMW; US $0.16), and (3) 5 ZMW (US $0.42). Survey response rates were analyzed using mixed-effects Poisson regression, adjusting for individual- and facility-level factors. Probability plots for survey completion were generated based on language, incentive level, and survey round. We projected the cost per additional response for different incentive levels. A total of 1006 participants were enrolled, with 72.3% (727/1006) from the urban HIV care facility and 62.4% (628/1006) requesting the survey in English. We sent a total of 1992 survey invitations for both rounds. Overall, survey completion across both surveys was 32.1% (637/1992), with significantly different survey completion between the first (40.5%, 95% CI 37.4-43.6%) and second (23.7%, 95% CI 21.1-26.4) invitations. Implementing a 5 ZMW (US $0.42) incentive significantly increased the adjusted prevalence ratio (aPR) for survey completion compared with those that received no incentive (aPR 1.35, 95% CI 1.11-1.63). The cost per additional response was highest at 5 ZMW, equivalent to US $0.42 (72.8 ZMW [US $5.82] per 1% increase in response). We observed a sharp decline of almost 50% in survey completion success from the initial invitation to follow-up survey administered 3 months later. This substantial decrease suggests that longitudinal data collection potential for a care experience survey may be limited without additional sensitization and, potentially, added survey reminders. Implementing a moderate incentive increased response rates to our health care experience survey. Tailoring survey strategies to accommodate language preferences and providing moderate incentives can optimize response rates in Zambia. Pan African Clinical Trial Registry PACTR202101847907585; https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=14613.

Answering an “SOS”: A 12-Month Review of An Urban Pathfinder Service

Abstract Background The Pathfinder service is a collaboration between the National Ambulance Service (NAS) and acute hospital Physiotherapists (PT) and Occupational Therapists (OT). The service aims to safely treat over-65s who have called 999 with low-acuity problems at home. It offers safe alternative care pathways to traditional Emergency Department (ED) attendance to older adults within our hospital catchment area (Bernard et al. 2021). Methods A retrospective review of the service database for 2023 was completed. A patient experience survey was conducted over a 4-week period in Quarter 4 of 2023. The survey consisted of both Likert scale and open-ended questions. Service statistics and Likert data were analysed in Microsoft Excel, while open-ended responses were analysed thematically. Results A total of 598 calls were received by our Pathfinder service in 2023: live 999 calls (n=407), and “Special Services” (SS) calls from Dublin Fire Brigade (n=191). 55% of live 999 call referrals attended by Pathfinder were safely kept at home. Of 191 SS referrals, 35% (n=66) had a review by the Pathfinder team. Of the 66 assessed, 94% (n=62) were safely kept at home. A total of 1,392 follow-up interventions (home visits, phone calls, onward referrals) were completed by PT and OT. Service user feedback was overwhelmingly positive, with 100% (n=20) of respondents stating they would be happy to see the Pathfinder team again if calling 999. General feedback highlighted the responsiveness, thorough assessment, and friendliness and professionalism of the team. Areas for development included increasing staffing and increasing to a 7-day service. Conclusion The Pathfinder service is effective in an urban setting. Over a 12-month period, 55% of patients assessed by Pathfinder were safely treated at home, with follow-up support from Pathfinder PT and OT. Service users report positive experiences and would be happy to see the team in the future when calling 999.

Quality of care after a horizontal merger between two large academic hospitals

BackgroundHospital mergers remain common, but their influence on healthcare quality varies. Data on effects of European hospital mergers are ill defined, and academic hospitals in particular. This case study assesses early quality of care changes in two formerly competing Dutch academic hospitals that merged on June 6, 2018. MethodsStatistical process control and interrupted time series analysis were performed. All adult, non-psychiatric patients, admitted between 01-03–2016 and 01-10-2022 were eligible for analysis. Primary outcome measure was all cause in-hospital mortality (or hospice), secondary outcomes were unplanned 30-day readmissions to same hospital, length of stay, and patients’ hospital rating. Data were obtained from electronic health records, and patient experience surveys. FindingsThe mean (SD) age of the 573 813 included patients was 54·3 (18·9) years. The minority was female (277 817, 48·4 %), and most admissions were acute (308 597, 53·8 %). No merger related change in mortality was found in the first 20 months post-merger (limited to the pre-Covid-19 era). For this same period, the 30-day readmission incidence changed to a downward slope post-merger, and the length of stay shortened (immediate level-change −3·796 % (95 % CI, −5·776 % to −1·816 %) and trend-change −0·150 % per month (95 % CI, −0·307 % to 0·007 %)). Patients’ hospital ratings seemed to improve post-merger. InterpretationIn this quality improvement study, a full- and gradual post-merger integration strategy for a Dutch academic hospital merger was not associated with changes in in-hospital mortality, and yielded slight improved results for secondary quality of care outcomes.

Patient Experience Survey as a Tool to Support Quality Improvement of a Geriatric Service in the Emergency Department (ED)

Abstract Background The aim of this survey was to valuate patient’s satisfaction with a Frailty Intervention Therapy Team (FITT) and gain insight into their thoughts about the service. Patients’ feedback is a vital component in monitoring and improving the quality of care. The data collected will help develop the service ensuring it’s patient centred and tailored to their needs. Methods A qualitative approach was taken in the form of a patient satisfaction survey. To limit bias responses, non-patient facing clerical facilitated the completion of the questionnaire with the patient. Results 27 surveys were administered over a 5-week period with an 81% response rate (n=22). 91% of patients surveyed felt the purpose of the FITT service was clearly explained to them, the team member had clearly introduced themselves and the team used both written and verbal information well –indicating an effective and efficient style of communication. 100% of patients reported that FITT treated them with dignity and respect. 18% of patients reported they were not involved in decision making relating to the care they received. The ED environment was rated as poor by 14% of patients, long wait time to be seen was also a concern. While some areas of patient concerns cannot be directly targeted by the team alone, we have a duty of care to highlight these concerns to the wider ED staff and hospital group. Conclusion A ‘what matters to you’ question has been incorporated into the assessment paperwork, to ensure patients’ wishes are being formally captured and placed centrally within care management planning. Communication to the patient was supported by providing a FITT information leaflet. Additional seating was procured by FITT to promote improvements in comfort and facilitate safe transfers of older patients in the ED. Patient feedback was presented to the ED governance group, including major themes of patient concern.

Using Patient Experience Surveys to Identify Potential Diagnostic Safety Breakdowns: A Mixed Methods Study.

One in 20 outpatients in the United States experiences a diagnostic error each year, but there are no validated methods for collecting feedback from patients on diagnostic safety. We examined patient experience surveys to determine whether patients' free text comments indicated diagnostic breakdowns. Our objective was to evaluate associations between patient-perceived diagnostic breakdowns reported in free text comments and patients' responses to structured survey questions. We conducted an exploratory mixed methods study using data from patient experience surveys collected from adult ambulatory care patients March 2020 to June 2020 in a large U.S. health system. Data analysis included content analysis of qualitative data and statistical analysis of quantitative data. In 2525 surveys with negative comments, 619 patients (24.5%) identified diagnostic breakdowns, including issues with accuracy (n = 282, 46%), timeliness (n = 243, 39%), or communication (n = 290, 47%); some patients (n = 181) reported breakdowns in multiple categories. Patients who gave a low average score (50 or less on a 100-point scale) on provider questions were almost seven times more likely to perceive a diagnostic breakdown than patients who scored their provider higher. Similarly, patients who gave a low average score on practice-related questions were twice as likely to perceive a diagnostic breakdown. Patient feedback in routinely collected patient experience surveys is a valuable and actionable information source on diagnostic breakdowns in the ambulatory setting. The more easily monitored structured survey data provide a screening method to identify encounters that may have included a patient-perceived diagnostic breakdown and therefore require further examination.

Survey of patient experience and management of vasomotor symptoms due to menopause from the PatientsLikeMe community.

This study aimed to describe menopause and treatment experiences of women with vasomotor symptoms due to menopause in the United States. A cross-sectional survey was administered to women 40-65 years of age recruited from PatientsLikeMe, a dedicated online platform for patients. A total of 196 women (mean age 55.7 years; 81.2% White) completed the survey and were included in the analyses. The majority (87.2%) reported experiencing bothersome symptoms; 54.3% (100/184) had daytime hot flashes, and 59.2% (109/184) had nighttime sweats and hot flashes, up to 5 times per day on average. Mean postmenopause duration was 10.8 years. Although most (68.5%, 126/184) reported having vasomotor symptoms for less than 5 years, some (14.1%, 26/184) had symptoms for more than a decade. Only 35.2% (69/196) were treated for their symptoms; the most frequently reported prescription treatment was hormone therapy (58%; 40/69), which was administered for less than 3 years in most cases (67.5%, 27/40). Although women were generally satisfied with their interactions with healthcare providers, 23.0% reported inadequate support. Sleep, personal relationships, and physical, emotional, and mental well-being were the most affected by vasomotor symptoms. Healthcare professionals with training in women's health were the most valued resource for dealing with the symptoms associated with menopause. Not all women with symptoms were treated. In those whose concerns were addressed by providers, a reluctance to pursue treatment was still observed. A need persists to ensure that this population has the resources and support needed to effectively manage symptoms.

Universal screening of colorectal tumors for lynch syndrome: a survey of patient experiences and opinions

BackgroundLynch syndrome represents the most common hereditary cause of both colorectal and endometrial cancer. It is caused by defects in mismatch repair genes, as well as EPCAM. Universal screening of colon tumors for Lynch syndrome via microsatellite instability (MSI) and/or immunohistochemistry (IHC) can identify patients and families at risk to develop further cancers and potentially impact surveillance and treatment options. The approach to implementation of universal screening, taking ethical considerations into account, is critical to its effectiveness, with patient perspectives providing valuable insight.MethodsPatients whose colon tumors underwent universal screening at Penn State Hershey Medical Center over a period of 2.5 years were mailed a survey on universal screening in 2017. Along with the survey, they received a recruitment letter and a summary explanation of research. The survey included both multiple choice and free-response questions that covered topics including respondent knowledge of Lynch syndrome, attitudes toward universal screening and experiences with the screening protocol as implemented.ResultsSixty-six of 297 possible patients (22.2%) responded to the survey, including 13 whose screening results raised concern for Lynch syndrome. 75.8% of respondents supported universal tumor screening without informed consent. 92.4% preferred receiving screening results regardless of outcome. Respondents described benefits to screening for themselves and their families.ConclusionsWhile broadly supporting universal tumor screening without informed consent, respondents also wanted more information shared about the screening policy, as well as their results. These patient preferences should be one of many factors considered when implementing universal screening and can also inform practices regarding both tumor profiling and universal genetic testing, which is becoming more prevalent.

Unbiased care, unequal outcomes: a nursing telehealth intervention reveals systematic inequities in COVID-19 care delivery

BackgroundThe Covid Connected Care Center (C4), a low-barrier telephone nurse hotline, was developed at an academic medical center to increase access to healthcare information and services across the state of Oregon, including to those without a usual source of care. Other studies have demonstrated that telephone triage services can positively influence health behaviors, but it is not known how this effect is maintained across racial/ethnic groups. The objective of this study was to show that the C4 reached throughout the state of Oregon, was valuable to callers, and that recommendations given affected callers’ subsequent health-related behaviors.MethodsThis mixed-methods study, informed by the RE-AIM (Reach, Effectiveness, Addoption, Implementation and Maintenance) framework, assessed caller demographics and clinical care from March 30 2020 until September 8, 2021. Descriptive statistics, multivariable risk models and Zou’s modified Poisson modeling were applied to electronic health record and call system data; An inductive approach was used for patient and staff experience surveys and semi-structured interviews. Approval was obtained from the OHSU Institutional Review Board (Study 00021413).Results145,537 telephone calls and 92,100 text-based contacts (61% and 39%, respectively) were included. Callers tended to not have a usual source of primary care and utilized recommended services. Emergency department utilization was minimal (1.5%). Racial or ethnic disparities were not detected in the recommendations, but Black (RR 0.92, CI 0.86–0.98) and Multiracial (RR 0.90 CI 0.81–0.99) callers were less likely than non-Hispanic white callers to receive a COVID-19 test. Participants in the post-call survey (n = 50) would recommend this service to friends or family. Interviews with callers (n = 9) revealed this was because they valued assistance translating general recommendations into a personalized care plan. C4 staff interviewed (n = 9) valued the opportunity to serve the public. The C4 was a trusted resource to the public and reached the intended audiences. However, disparities in access to COVID-19 testing persisted.ConclusionsNursing triage hotlines can guide caller behavior and be an effective part of a robust public health information infrastructure.