Patient Experience Survey Research Articles

When "virtual" works and when it doesn't: A survey of physician and patient experiences with virtual care during the COVID-19 pandemic.

To assess the experience of virtual care among both patients and physicians across a range of clinical scenarios during the COVID-19 pandemic. A web-based survey was disseminated to patients and physicians through a variety of media and healthcare communications from May 2020 to July 2021. Demographic details and attitudes across a range of virtual care domains were collected. Quantitative responses were analyzed descriptively. Open-text responses were gathered to contrast when a virtual visit was superior or inferior to an in-person one, and a thematic content analysis was used. There were 197 patients and 93 physician respondents, representing a range of demographic and practice characteristics. Patients noted several benefits of virtual care and felt it should continue to be available. Physicians felt they could do a lot of their care virtually. Common themes related to the superiority of virtual care were for "quick" visits, reviewing test results, chronic disease monitoring, and medication needs. Virtual care was less ideal when a physical exam was needed, and was not perceived as a good fit for an individual's cultural, language, or emotional needs. Certain conditions were identified as both ideal and non-ideal for the virtual format (e.g. mental healthcare). Certain situations are more amenable to virtual care with personal preferences among both patients and physicians. Future priorities should ensure that virtual care is effective across the range of clinical situations in which it may be used and that both virtual and in-person options are equally available to those who want them.

Does an “EZ” Survey Improve the Data Quality of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Survey 3.1?

Completing self-administered patient experience surveys is challenging for many patients. We randomized adult patients receiving care from an urban safety net provider to complete the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group Survey 3.1 (CG-CAHPS 3.1), or an “EZ” survey created using plain language principles. We compared response rates, item missingness, item-scale correlations, and reliability of patient experience scores based on 264 completed surveys (64% female, 66% Hispanic, 33% high school education or less). The CG-CAHPS 3.1 survey response rate was higher (20% vs 16%), and failure to follow skip instructions was more common for the EZ survey. Internal consistency reliability for multi-item scales was similar, but provider-level reliability was higher for the EZ than for the CG-CAHPS 3.1 survey measures. Cognitive interviews with patients are needed to assess whether the wording of the EZ survey is responsible for the lower response rates and more skip pattern errors. Future studies are also required to provide additional information about the psychometric properties of the CG-CAHPS 3.1 and EZ surveys.

How do Patients and Managers Value Gold Standard Elements in Primary Health Care.

The study explores how Primary Health Care Team managers in Catalonia assess the gold standard criteria for excellence in Primary Health Care and whether there are differences in evaluations between the best and worst-rated centers by patients in a patient experience survey included in the Catalan Satisfaction Survey Plan (PLAENSA). The researchers used mixed methods to analyze 12 interviews done to Primary Care Team (PCT) managers. Interviews were transcribed and analyzed, yielding three themes and 12 subthemes. A Likert-type questionnaire was also used to compare results. Scores were observed between 4.8 and 3.5 regarding a constant relationship with the patient (longitudinality), and patient's experience, respectively. All managers highlight accessibility, nursing management, and administrative support as essential to patient experience. No significant differences exist in PCT's scores or gold standard element application. Disposing of good accessibility, crucial in Primary Health Care management, an administrative team, and efficiently prepared and motivated professionals, are key elements to a patient's experience in Primary Health Care. Contrary to other studies, interviewees described better accessibility in rural centers, which is likely why they are better valued by patients.

Measuring Patient-Reported Use and Outcomes From Complementary and Integrative Health Therapies: Development of the Complementary and Integrative Health Therapy Patient Experience Survey.

Assessing the use and effectiveness of complementary and integrative health (CIH) therapies via survey can be complicated given CIH therapies are used in various locations and formats, the dosing required to have an effect is unclear, the potential health and well-being outcomes are many, and describing CIH therapies can be challenging. Few surveys assessing CIH therapy use and effectiveness exist, and none sufficiently reflect these complexities. In a large-scale Veterans Health Administration (VA) quality improvement effort, we developed the "Complementary and Integrative Health Therapy Patient Experience Survey", a longitudinal, electronic patient self-administered survey to comprehensively assess CIH therapy use and outcomes. We obtained guidance from the literature, subject matter experts, and Veteran patients who used CIH therapies in designing the survey. As a validity check, we completed cognitive testing and interviews with those patients. We conducted the survey (March 2021-April 2023), inviting 15,608 Veterans with chronic musculoskeletal pain with a recent CIH appointment or referral identified in VA electronic medical records (EMR) to participate. As a second validity check, we compared VA EMR data and patient self-reports of CIH therapy utilization a month after survey initiation and again at survey conclusion. The 64-item, electronic survey assesses CIH dosing (amount and timing), delivery format and location, provider location, and payor. It also assesses 7 patient-reported outcomes (pain, global mental health, global physical health, depression, quality of life, stress, and meaning/purpose in life), and 3 potential mediators (perceived health competency, healthcare engagement, and self-efficacy for managing diseases). The survey took 17minutes on average to complete and had a baseline response rate of 45.3%. We found high degrees of concordance between self-reported and EMR data for all therapies except meditation. Validly assessing patient-reported CIH therapy use and outcomes is complex, but possible.

Understanding Patients' Negative Experiences with Telehealth: A Content Analysis of Survey Data.

Understanding differences in how demographic groups experience telehealth may be relevant in addressing potential disparities in telehealth usage. We seek to identify and examine themes most pertinent to patients' negative telehealth experiences by age and race in order to inform interventions to improve patients' future telehealth experiences. We performed a content analysis of Press Ganey patient experience surveys from adult patients at 17 primary care sites of a large, public healthcare system with visits from April 30, 2020 to August 27, 2021. We used sentiment analysis to identify negative comments. We coded for content themes and analyzed their frequency, stratifying by age and race. We analyzed 745 negative comments. Most frequent themes differed by demographic categories, but overall, the most commonly applied codes were "Contacting the Clinic" (n = 97), "Connectivity" (n = 84), and "Webside Manner" (n = 79). The top three codes accounted for >40% of the negative codes in each race category and >35% of the negative codes in each age category. While there were common negative experiences among groups, patients of different demographics highlighted different aspects of their telehealth experiences for potential improvement.

Person-centred quality indicators are associated with unplanned care use following hospital discharge

ObjectivePerformance indicators are used to evaluate the quality of healthcare services. The majority of these, however, are derived solely from administrative data and rarely incorporate feedback from patients who receive...

Learning from patients: The impact of using patients' narratives on patient experience scores.

Enthusiasm has grown about using patients' narratives-stories about care experiences in patients' own words-to advance organizations' learning about the care that they deliver and how to improve it, but studies confirming association have not been published. We assessed whether primary care clinics that frequently share patients' narratives with their staff have higher patient experience survey scores. We conducted a 1-year study of 5,545 adult patients and 276 staff affiliated with nine clinics in one health system. We used multilevel models to analyze survey data from patients about their experiences and from staff about exposure to useful narratives. We examined staff confidence in own knowledge as a moderator because confidence can influence use of new information sources. Frequency of sharing useful narratives with staff was associated with patient experience scores for all measures, conditional on staff confidence in own knowledge ( p < .01). For operational measures (e.g., care coordination), increased sharing correlated with subsequently higher performance for more confident staff and lower performance or no difference for less confident staff, depending on measure. For relational measures (e.g., patient-provider communication), increased sharing correlated with higher scores for less confident staff and lower scores for more confident staff. Sharing narratives with staff frequently is associated with better patient experience survey scores, conditional on confidence in knowledge. Frequently sharing useful patient narratives should be encouraged as an organizational improvement strategy. However, organizations need to address how narrative feedback interacts with their staff's confidence to realize higher experience scores across domains.

An Orthopaedic perspective on developing a Patient Experience Survey tool

Introduction: Our program’s aim is to integrate patients' values and perceptions of quality care into clinical decision-making and integrated orthopaedic care models that are reflective of the community/population that is served. Our institution currently has limited patient experience data or standardized tools that would allow us to comprehensively understand patient perspective across our orthopaedic populations. To that end, we designed a survey to understand patients’ experiences and any gaps that would require actionable change in real-time.&#x0D; Objectives and Methodology: The goal was to develop a survey tool that can meaningfully capture patient needs and preferences that impact their experiences and help identify any gaps or areas of opportunity to address. An environmental scan was completed which identified two validated patient experience surveys used to inform our survey development: CIHI’s CPES-IC (Canadian Institue for Health Information Canadian Patient Experience Survey - Inpatient Care) and OHA (Ontario Hospital Association) Outpatient Experience Survey. The survey was tested across a multidisciplinary team via feedback surveys and focus groups: 6 Patient Partners, 1 Clinical Manager, 3 Advanced Practice Practitioners, 3 Orthopaedic Surgeons, 4 Researchers, and 2 Administrators. Findings were collated and used to iterate the survey content until consensus was reached on a final patient experience survey. &#x0D; Highlights or Results or Key Findings: The focus of the survey is on understanding the patient’s Outpatient experience with their care team in orthopaedic clinics from referral to assessment. The survey was designed to cover multiple orthopaedic populations including patients with Hip and Knee, Foot and Ankle, Shoulder, Elbow and Spine issues. It focuses on two key components of the patient journey: 1) Pre-appointment and 2) Post-appointment. The pre-appointment pathway was deemed to be important as patient experience is often captured once care is delivered and it was important to understand how patients perceive their pre-appointment experience defined as the time from referral through day of appointment up to the time patients are seen (arrival at hospital, checking in to clinic). Specifically, the pre-appointment survey has up to 42 questions that aim to capture the patients’ perspectives on the clinic’s communication practices, wait time to be contacted, wait time for an appointment, how prepared patients felt for their appointment, how they felt about access to the clinic, their experiences with care transitions, their thoughts on transportation and any education that they received, and their overall experience. The post-appointment survey has up to 41 questions focused on understanding the patients’ perspectives on care transitions, the clinic space; wait time to see the practitioner, expectations, engagement in decision making, communication practices, education they received, and any other factors impacting their experience (e.g. confidentiality, empathy, trust, dignity). &#x0D; Conclusion and Next Steps: The survey, reviewed with our patient partners and multidisciplinary team, was found to be comprehensive and have good face validity. The survey will be implemented and the data will be analyzed to understand themes around areas of success and areas of improvement to advance our integrated models of care in order to provide high quality patient-centered care.

Leveraging Patients' Creative Ideas for Innovation in Health Care.

Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.

Abstract A034: How we learn from Black TNBC patients to act for equitable and unbiased care

Abstract Background: Black women are at higher risk for early onset and increased breast cancer mortality, especially from the sub-type Triple-Negative Breast Cancer (TNBC), than their white peers. A patient experience survey has not been implemented or published for Black women diagnosed with TNBC. Tigerlily Foundation (TLF) conducted a TNBC survey of BIack women to understand the patient experience throughout the cancer continuum of care. Methods: The survey instrument received an IRB exception and included 40 questions organized by the following themes: Demographics, Self-Detection/Early Assessment, Screening to Diagnosis, Diagnosis to Treatment, Post Treatment and Palliative Care/Survivorship, Emotional Trauma and Mental Health, and Trust/Bias. Data collection occurred between December 2022 and January 2023. Two methodological approaches influenced this innovative study design: 1) a Health Literate and Culturally Sensitive approach and 2) a Trusted Outreach approach. The survey was sent to leaders of patient-based organizations who shared the TLF survey with their constituents. Results: All participants (N = 106) racially identified as Black women diagnosed with TNBC. The age of participants ranged from 25 – 71. Participants were not always given information to manage their expectations before or after the screening process, as 38% reported they did not receive such information, while 45% reported they did. The number of times participants required diagnostic imaging ranged from only once (24%), two-three times (41%), four-five times (17%), or greater than six times (11%). Biopsies also varied among participants from one (25%), two-three times (40%), four-five times (15%), or greater than six times (8%). Biomarker testing was not equitably offered to all participants, as 30% reported they were not given the opportunity, while 48% were given the choice. While most participants reported a good understanding of their prognosis and treatment options (59%), other participants shared that the information they received could have been better (26%). Others stated they were given zero information to work with (15%). Many participants experienced a diagnosis change, and 57% were initially diagnosed with a different breast cancer subtype, while 24% were initially diagnosed with TNBC. Conclusions: Prospective implementation science is needed to ensure equitable care standards are sustainably provided to Black women. It is imperative to understand the cancer care continuum from the perspective of the patients, what they think of the care received and what education, resources and care they would have liked to receive before or upon diagnosis. Health equity is not achieved based on EHR, county-level beneficiary data, or SEER data alone. Gathering patient experience information is a factor in achieving health equity. TLF successfully reached Black TNBC patients to share their authentic experiences and provided a framework for other research institutions and patient advocacy groups to do the same. Citation Format: Virginia Leach, Jeanne Regante, Maimah Karmo, Lizzie Wittig. How we learn from Black TNBC patients to act for equitable and unbiased care [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A034.

Patient experiences of being advised by a healthcare professional to get pregnant to manage or treat endometriosis: a cross-sectional study

BackgroundThere is a lack of evidence that pregnancy reduces endometriotic lesions or symptoms, however studies indicate that people with endometriosis are commonly advised to get pregnant to manage or treat endometriosis. This study sought to examine the impact of this advice on patients with endometriosis when the advice was provided by healthcare professionals.MethodsThe Endometriosis Patient Experience Survey was a self-reported, community-based, cross-sectional online survey of people who had been medically diagnosed with endometriosis. Descriptive statistics were used to analyse the quantitative survey data and thematic analysis was undertaken for the qualitative survey data.Results1892 participants had received the advice to get pregnant or have a baby to manage or treat their endometriosis, with 89.4% of participants receiving this advice from healthcare professionals. In exploring the qualitative data, seven themes were contextualised relating to the impact of this advice in terms of health literacy, accepting the advice, rejecting the advice, major life decisions, healthcare interactions, mental health and relationships.ConclusionsThis study demonstrates profound and often negative patient impacts of the advice from healthcare professionals to get pregnant to manage or treat endometriosis. Impacts ranged from planning for pregnancy, hastening the making of major life decisions, eroding trust with healthcare professionals, worsening mental health and straining relationships. Providing evidence-based information on the treatment and management of endometriosis is essential. Pregnancy or having a baby should not be suggested as a treatment for endometriosis and the provision of this advice by healthcare professionals can have negative impacts on those who receive it.

Interim Analysis of Treatment Satisfaction from a Prospective Phase 4 Study in Adult Immune Thrombocytopenia (ITP) Subjects after Switching from Eltrombopag or Romiplostim to Avatrombopag

Background: Recently, the Thrombopoietin-Receptor Agonist (TPO-RA) Patient experience survey (TRAPeze) determined that the characteristics which influence preference towards TPO-RA treatments the most were the method of administration and drug-food interactions. Specifically, participants were more likely to select an oral tablet over a subcutaneous injection and a treatment without food restrictions rather than one with food restrictions (McDonald V, et al, 2021). A majority of patients in a real-world analysis who switched from eltrombopag (ELT) or romiplostim (ROMI) to avatrombopag (AVA) did so due to perceived convenience benefits (Al-Samkari H, et al, 2022). The ongoing AVA-ITP-401 prospective interventional study is evaluating treatment satisfaction and on-therapy convenience in patients immediately switching to AVA from either ELT or ROMI and aims to provide valuable patient-reported outcomes. Safety and platelet count (PC) response to AVA following a switch from the other two TPO-RAs are also being evaluated. In a separate abstract submission, the mean/median PCs are reported to either be improved or maintained with AVA treatment over 90 days. Methods: This is an interim analysis of a prospective, multi-center, open-label Phase 4 study being conducted in the US (NCT04638829) since March 2021. Subjects who have been receiving ELT or ROMI for ≥90 days prior to study entry are enrolled and immediately switched to AVA at a starting dose of 20 mg daily. Key inclusion criteria: age ≥18 years; subjects have been undergoing treatment for primary ITP with ELT or ROMI for ≥90 days prior to the screening visit; subjects have had a previous response to either ELT or ROMI. The primary endpoint is occurrence of adverse events and serious adverse events. A key secondary endpoint is the change from baseline in each of the 4 domains of the self-administered Treatment Satisfaction Medication Questionnaire (TSQM) Version 1.4 (convenience, global satisfaction, effectiveness, and side effects) to Day 90 (D90) or End of Study (EOS). An increase in domain mean score indicates an increased patient preference to a given therapy in that domain. Clinic Visits were mandated per protocol at Days 15 (D15), 30 (D30), 60 (D60), and 90/End of Study (D90/EOS) with PCs obtained at each timepoint. The TSQM was assessed at baseline (BL), D30, and D90/EOS. Results: As of April 1, 2023, 51 patients were screened with 47 enrolled. 35 completed the study, 3 dropped out, and 6 are on-going. The mean age at enrollment was 58 years, the median (min,max) time since ITP diagnosis was 2.88 years (0.2,31.0), 60% were female, 72% were Caucasian, and 11% had a previous history of splenectomy. 62% of patients were switched to AVA from ELT (median prior treatment duration 42 weeks (range 12 - 442); median daily dose 50 mg) and 38% from ROMI (median prior treatment duration 81 weeks (range 12 - 468); median weekly dose ≤3 µg). Safety results will be reported when the study is complete. TSQM individual domain BL, D30, and D90/EOS mean values and mean percent change from BL following the switch from either ELT or ROMI to AVA are summarized in Table 1. In the Total Population, scores at BL in all four domains were generally high reflecting patient satisfaction to their prior therapy. Following the switch to AVA, however, there was measurable improvement in satisfaction across all domains-most pronounced in the effectiveness, convenience, and global satisfaction domains. This improvement began at D30 and was maintained through D90/EOS. The increase in patient-reported satisfaction was greater in ELT-switchers than with ROMI-switchers; however, improvement in satisfaction was observed by EOS across all four domains in the ROMI-switching population as well. Summary/Conclusion: Despite high patient satisfaction scores at BL from prior therapy (ELT or ROMI), patients reported higher satisfaction following a switch to AVA across all domains of the TSQM (effectiveness, side effects, convenience, and global satisfaction) over 90 days. In a population of patients who were generally responding to TPO-RAs prior to a switch to AVA, mean/median PCs were also either improved or maintained with AVA treatment for the duration of the study (reported in a separate abstract submission), suggesting that some patients may experience sustained effectiveness paired with enhanced overall treatment satisfaction when switching from ELT or ROMI.

Global Perspectives of Lived Experience with CLL - Patient and Support Group Reported Insights of Access, Treatment, and Unmet Needs

Background Chronic lymphocytic leukemia (CLL) is the most common leukemia in the Western world, with patients facing years of monitoring and treatment. The CLL Advocates Network (CLLAN) was interested in exploring the experience of patients and support organisations to access of treatment and care. The analysis was based on the results of two surveys: the CLL Patient Advocacy and Support Survey(CLL-PAGS)conducted by CLLAN in 2021, and the Global Leukemia Patient Experience Survey (GPES) conducted in the same year in collaboration with Acute Leukemia Advocates Network and CML Advocates Network. CLL-specific data were extracted from the latter survey. Methodology The CLL-PAGSexplored the services provided by organisations for patients and their views on healthcare in their respective countries. The GPES provided data from questions completed by patients on their experience across their CLL journey. The surveys were available in 7 (CLL-PAGS) and 10 (GPES) languages and online only. Global recruitment through patient organisations, email, online forums, newsletter, and social media. Survey design was developed through literature review, patient advisory session and expert panel insights. The fieldwork of theCLL-PAGS was conducted for 12 weeks closing in August 2021. The GPES was open between September and November 2021. Building on analysis of socio demographics of age and gender, countries were segmented into High income (HIC) and Low-and-middle-income countries (LMIC), as per the Organisation for Economic Co-operation and Development´s (OECD) classification. Results 57 organisations from 40 countries (19 from LMIC and 38 from HIC) responded to the CLL-PAGS. The GPES received a total of 2,646 responses from 40 countries, 45% of whom (n=1,202 in 30 countries) corresponded to CLL. 1118 patients from HIC and 11 patients from 8 countries responded within the LMIC cohort. 73 respondents did not report a country. Because of the difficulty retrieving significant patient information from LMIC, we believe there's value in the results from our small sample. Age distribution in the GPES was similar to previous studies, with CLL predominantly in older people. 19 patients were aged 35-44 years with 2% &amp;lt;35 years. There was higher representation in LMIC of younger people (90% 35-64 years). 65% of respondents from HIC were &amp;gt;65 years. Geographical region demonstrated clear differences with HIC (34%) respondents being asymptomatic at diagnosis and all respondents from LMIC being symptomatic. Of those who sought investigation of symptoms, 36% of HIC and 33% of LMIC were diagnosed after first consult. LMIC compared to HIC had delay with 33% diagnosed within 3 and 33% within 5 or more visits. There was a difference between LMIC and HIC in treatment start. All respondents from LMIC commenced treatment within two years (42% in HIC) which may be attributed to the symptomatic presentation. Access to CLL specialist care differed as per figure 1. Variance in current treatment with 75% of LMIC on chemotherapy, while HIC reported receiving oral targeted therapy (59%) or immunotherapy (21%). Gaps were shared globally with 52% reporting they had no choice in treatment decision. LMIC were less likely at 60%. Scaled ranking identified only 54% of respondents (30% in LMIC) felt completely involved in treatment decisions. 3/4 of patients globally reported provision of information by treating team about their most recent treatment. This was lower in LMIC (50%). Further divide on patient literacy with 71% of HIC patients and only 40% in LMIC reporting information provision as well understood. 54% reported not being given the option to participate in trials. This was higher in LMIC (70%) than HIC (53%). Preference of being offered a clinical trial is shown in figure 2. Of those who had participated in a trial, 86% found this a positive experience, indicating an opportunity for the research community. Conclusion Overall, patients would like more choice in treatment decisions, increased access to clinical trials and better information. The survey responses and wider literature around CLL suggest that education for patients and HCPs around clinical trials would be beneficial, as would new methods of communicating and engaging with LMIC patients. There is opportunity to improve partnerships between patient organisations and treating teams to address the gaps. The emerging trends from the surveys merit further research.

Evaluating Patient Experience in a Multidisciplinary Breast Cancer Clinic: A Prospective Study.

Background: Multidisciplinary clinics (MDCs) are a care model in which patients see several physicians across specialties and/or other allied health professionals in a single appointment in a shared space. This study sought to better understand patients' experiences with breast cancer (BC) MDC. Methods: A total of 429 patients diagnosed with BC and seen in a MDC between November 2020 and November 2021 were invited to participate in a patient experience survey. Results: In total, 116 patient respondents (27%) with representative demographics described their experience. Most patients report feeling "somewhat prepared" for the BC MDC experience (67%, median = 3.7, interquartile range [IQR] = 1.9), but with variability. The major areas of positive feedback were that the MDC was convenient (89.3%), efficient use of time (65.2%), and a good way to get questions answered (65.2%). Major criticisms included that the MDC was overwhelming (16.1%) and/or too long (4.5%). When asked to rate the top three satisfaction areas of MDCs, patients chose seeing multiple providers during a single visit (80.4%), communication about the process before and throughout the MDC (48.2%), and inclusivity of their support system (38.4%). The highest rated dissatisfiers were the volume of information presented (42.9%) and patients' emotional comfort (anxiety/stress) during MDC appointment (30.2%). Overall, 83% of patients with BC rate the MDC experience as excellent (median = 4.8, IQR = 0.9) and would be "very likely" to recommend BC MDC (median = 4.8, IQR = 0.9). Conclusion: Patients value seeing multiple providers simultaneously in an environment inclusive of their support systems, which is described as convenient and efficient. Improving emotional distress is a key opportunity to improve patient experience.

Immigrant and ethnic minority patients` reported experiences in psychiatric care in Europe – a scoping review

BackgroundThere is little evidence on experiences in psychiatric care treatment among patients with immigrant or ethnic minority background. Knowledge about their experiences is crucial in the development of equal and high-quality services and is needed to validate instruments applied in national patient experience surveys in Norway. The aim of this scoping review is to assess and summarize current evidence on immigrant and ethnic minorities` experiences in psychiatric care treatment in Europe.MethodsGuidelines from the Joanna Briggs Institute were followed and the research process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. The literature search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, and APA PsychInfo, up to Dec 2022, for articles on immigrant patients` experiences in psychiatric care. Reference lists of included articles were screened for additional relevant articles. Titles and abstracts were screened, and potentially relevant articles read in full-text, by two researchers. Evidence was extracted using an a priori extraction form and summarized in tables and text. Any disagreement between the reviewers regarding inclusion of articles or extracted information details were resolved through discussion between authors.ResultsWe included eight studies in the scoping review. Immigrant and ethnic minority background patients did not differ from the general population in quantitative satisfaction questionnaires. However, qualitative studies showed that they experience a lack of understanding and respect of own culture and related needs, and difficulties in communication, which do not seem to be captured in questionnaire-based studies.ConclusionRaising awareness about the importance of respect and understanding for patients` cultural background and communication needs for treatment satisfaction should be addressed in future quality improvement work.

A prrt patient experience survey - what really matters to patients?

A prrt patient experience survey - what really matters to patients?

Real-World Experience of People with Hemophilia A Receiving Turoctocog Alfa Pegol (N8-GP): Results from a Patient Experience Survey.

Turoctocog alfa pegol (N8-GP) is an extended half-life recombinant factor VIII molecule used for the treatment of hemophilia A (HA). The purpose of this study was to investigate real-world experiences of patients with HA treated with N8-GP. A 25-minute online survey was completed by adults (≥18 years) and caregivers of adolescents (12-16 years) with HA receiving N8-GP across six countries (Germany, Italy, Portugal, Spain, UK and US). Patients were recruited using a multichannel approach through recruitment panels, referrals from healthcare professionals and patient associations. The survey comprised a questionnaire with metrics including satisfaction and preferences for N8-GP, quality of life (QoL) and long-term impact. A total of 62 participants (98% male [n=61], mean age 29 years) comprising 46 patients and 16 caregivers completed the survey. Patients (60% non-severe [n=37] and 40% severe [25]) were on N8-GP for a mean period of 1.4 years. Patients expressed satisfaction (95%vs 42%, p<0.001) and preference (91% vs 9%, p<0.001) for N8-GP vs their previous treatments. Most patients with severe HA (87%, p=0.038) and patients on prophylaxis (84%, p<0.001) stated lower frequency of injections as their main reason for satisfaction, while improved QoL drove satisfaction for non-severe patients (81%, p=0.053). Overall, patients perceived that QoL score improved (74.8 vs 65.9, p=0.01) with N8-GP treatment compared with previous treatments. Flexibility to store at room temperature was one of the key convenience factors driving satisfaction. Patients believed that N8-GP can offer a long-term impact in areas such as ability to perform day-to-day activities (68%), independence to live like a person without hemophilia (63%), ability to travel (60%) with a feeling of optimism and hopefulness (82%). Lower frequency of injections, storage flexibility and improved QoL drove satisfaction and preference for N8-GP over previous treatments among patients with HA.

MA07.08 Patient Involvement in Decision-Making Around Their Treatment and Care: Findings from a Global Patient Experience Survey

MA07.08 Patient Involvement in Decision-Making Around Their Treatment and Care: Findings from a Global Patient Experience Survey

8.G. Workshop: Developments in patient experience surveys: how do we maintain relevance and maximise impact?

Abstract Background Patient and service-user experiences of healthcare are a vital component of the monitoring and assessment of the quality and performance of health and social care services and systems, as well as an important predictor of patient outcomes. The National Care Experience Programme (NCEP) is a partnership between the Irish health and social care regulator (Health Information and Quality Authority, HIQA), the national public healthcare provider (Health Service Executive, HSE), and policy makers (Department of Health). The NCEP conducts national care experience surveys with the aim of learning from people's experiences in order to improve the quality of health and social care services in Ireland. The programme includes surveys of acute hospital inpatient, maternity, maternity bereavement, nursing home and end-of-life care. Additional surveys of cancer care and mental health services are currently in development. Objectives Regular review and adaptation of existing surveys, expansion into new areas of care, and development of new methods of data collection, analysis and dissemination of survey findings and stakeholder engagement are required in order to remain agile and responsive to evolving health and social care landscapes and the changing needs of stakeholders, as well as harnessing technological advances and ensuring sustainability. The aim of this workshop is to bring together experts in patient experience from across the health system to stimulate discussion, knowledge sharing and cross-fertilisation of ideas. Presentations will focus on international developments and trends in patient experience, as well as considerations for surveying bereaved parents and families on their experiences of maternity bereavement and end-of-life care. The use of new technologies, including computational text analytics and predictive modelling to facilitate qualitative data analysis and maximise the use of survey findings will be outlined, followed by case studies of how care experience data are used to inform health and social care legislation, policy and practice in Ireland. Experiences from other jurisdictions and potential implications will be discussed with the audience. The workshop will contribute to a better understanding of the value and impact of collecting patient experience feedback and explore how new technologies can be used to generate insights and maximise the use of survey data. Format of the workshop The workshop will include a brief introduction on patient experience and the Irish National Care Experience Programme, followed by five presentations with time for audience contributions and questions after each speaker. The workshop will conclude with a discussion with the audience and presenters. Key messages • Patient experiences are a key component of the monitoring and assessment of the quality and performance of health and social care services and systems. • Regular review and adaptation of surveys and development of new methods are required to remain responsive to evolving health and social care landscapes and ensure sustainability.

Learning from experience: Integrating patient experience survey responses with other key metrics to understand and improve care quality and patient safety

Abstract Issue The Irish National Care Experience Programme (NCEP) collects rich qualitative and quantitative data on patient and service-user experiences of healthcare. These survey data are not routinely triangulated with other quality and safety datasets for patient safety surveillance. Description of the problem The Irish Health Service Executive has commenced development of a quality and patient safety surveillance system called Quality and Safety Signals (QS Signals). This programme seeks to optimise the use of existing data to reduce variability in quality and safety of services, identify risks and signals of concern, as well as learnings from signals of excellence. Patient experience data is a rich source of insight into quality and safety of care but currently, it is not routinely considered alongside other quality and safety measures. Results As a proof of concept, the Quality and Safety Signals programme is collaborating with the National Women and Infants Health Programme (NWIHP) to develop a composite profile of quality and safety for maternity and neonatal services. A Clinical Advisory Group (CAG) has been established with multi-disciplinary clinical representation from Ireland's six Maternity Networks. To reach agreement amongst the CAG on the indicators relevant to the measurement of quality and safety, a series of interviews, workshops and a Delphi Survey are being conducted. The co-design process seeks consensus on the themes and classification structure appropriate for a composite profile of quality and safety. Lessons The implementation of a patient safety surveillance system challenges the Irish health system to reflect on how available data can best be harnessed. Person-centredness is a core domain of healthcare quality. Capturing the person's experience of care through the NCEP surveys is vital to ensuring the development of a comprehensive profile and guiding quality improvements.