Patient Experience Research Articles

Patient Experience and Nurse Staffing Level in South Korea.

Patient experience has recently become a key driver for hospital quality improvement in South Korea, marked by the introduction of the Patient Experience Assessment (PXA) within its National Health Insurance (NHI) in 2017. While the PXA has garnered special attention from the media and hospitals, there has been a lack of focus on its structural determinants, hindering continuous and sustained improvement in patient experience. Given the relatively low number of practicing nurses per 1,000 population in South Korea and the significant variation in nurse staffing levels across hospitals, the staffing level of nurses in hospitals could be a crucial structural determinant of patient experience. This study examines the association between patient experience and hospital nurse staffing levels in South Korea. We used individual- and hospital-level data from the 2019 PXA, encompassing 7,250 patients from 42 tertiary hospitals and 16,235 patients from 109 non-tertiary general hospitals with 300 or more beds. The dependent variables were derived from the complete set of 21 proper questions on patient experience in the Nurse and other domains. The main explanatory variable was the hospital-level Nurse Staffing Grade (NSG), employed by the NHI to adjust reimbursement to hospitals. Multi-level ordered/binomial logistic or linear regression was conducted accounting for other hospital- and patient-level characteristics as well as acknowledging the nested nature of the data. A clear, positive association was observed between patient experience in the Nurse domain and NSG, even after accounting for other characteristics. For example, the predicted probability of reporting the top-box category of "Always" to the question "How often did nurses treat you with courtesy and respect?" was 70.3% among patients from non-tertiary general hospitals with the highest NSG, compared to 63.1% among patients from their peer hospitals with the lowest NSG. Patient experience measured in other domains that were likely to be affected by nurse staffing levels also showed similar associations, although generally weaker and less consistent than in the Nurse domain. Better patient experience was associated with higher hospital nurse staffing levels in South Korea. Alongside current initiatives focused on measuring and publicly reporting patient experience, strengthening nursing and other hospital workforce should also be included in policy efforts to improve patient experience.

Analysis of Factors That Influence The Level of Patient Satisfaction in Online Registration at The Ngancar Health Center, Kediri District

Patient assessments of health worker services come from the patient's experience. The patient experience aspect can be interpreted as a treatment or action from a nurse that is or has been experienced, felt and endured by someone who uses health services. The aim of this research is to analyze the influence of service quality and perception on the level of patient satisfaction in registering online at the Ngancar Community Health Center, Kediri Regency. The design of this research is quantitative observational research with a cross sectional approach with the focus of the research directed at analyzing the influence of service quality and perceptions on the level of patient satisfaction in carrying out online registration at the Ngancar Community Health Center, Kediri Regency with a population of 72 respondents and a sample of 53 respondents taken using techniques. Accidental Sampling. The findings showed that the majority of respondents had good service quality, 27 respondents (50.9%). Most respondents had a good category perception as many as 28 respondents (52.8%). Most respondents had satisfaction in the satisfied category, 30 respondents (56.6%). The results of research using the Logistic Regression Test show that with a p-value < 0.05, H1 is accepted so it can be concluded that simultaneously there is an influence of service quality and perception on the level of patient satisfaction in registering online at the Ngancar Community Health Center, Kediri Regency. It is hoped that respondents can provide input and constructive criticism so that the online registration service provided can be as expected.

Patient experiences of information-sharing and patient-centred care across the broad landscape of primary care practice and provision: a nationally representative survey of Australian adults

BackgroundAustralian government strategies and frameworks have been developed in recent years to encourage the integration and coordination of primary care delivery; including patient-centred approaches to clinical and preventative care, and health promotion. This study aims to explore patient experiences of information-sharing and patient-centred care across various primary care clinical settings, with a particular focus on clinical encounters with GPs, naturopaths, osteopaths and acupuncturists.MethodsData about healthcare utilisation and experiences from a 63-item cross-sectional survey obtained from a nationally representative sample of Australian adults aged ≥ 18 years were analysed. Chi-square and Kruskal-Wallis H tests were used to explore differences in the experiences of knowledge and information sharing during GP consultations among those who also consulted with a naturopath, osteopath or acupuncturist, compared those who had not. Logistic regression was used to investigate correlations between participants perceptions about GP consultation outcomes, and the GP’s information-sharing behaviour or perceived experience of patient-centredness.ResultsAcross 2354 participants, verbal explanation (76.3%) and/or individualised handouts (16.8%) were the most common type of information shared in GP consultations. Individuals who consulted with a GP and a naturopath, an osteopath, or an acupuncturist reported a lower rate of receiving a verbal explanation from their GP but higher rate of receiving other types of information sources including handouts. Over one quarter of study participants who visited a GP did not discuss any of their health information with their GP. Information sharing was lower for individuals who also visited a naturopath, osteopath or acupuncturist. Participants scored their consultations with a GP as patient-centred, but these scores were lower among participants who also consulted with at least one other primary care practitioner type included in the study.ConclusionsPublic health and health services researchers, policymakers and leaders of primary care professions have a role and responsibility to ensure practitioners are confident and competent in sharing health information with their patients that considers their health literacy needs, and the importance of patient-centred care. Research focussed on a more in-depth understanding of the differences and relationships observed across the primary care landscape in this study is recommended.

A clinical audit in a UK-based acupuncture private practice: assessing patient demographics, outcomes and experience.

The aim of this clinical audit was to assess patient demographics, outcomes and experience with care in patients who received acupuncture in a private practice setting in the United Kingdom. Demographic and clinical data were extracted from patients' records over a 7-year period. The Measure Yourself Medical Outcomes Profile (MYMOP) questionnaire and an adapted Patient Global Impression of Change (PGIC) scale were used routinely to monitor patient outcomes over an 18-month period. Finally, a retrospective questionnaire was used to assess patient beliefs regarding treatment effectiveness, adverse events and overall experience with care. Patients not providing consent or known to be deceased were excluded. Data were collected for 306 patients presenting with 376 separate health complaints, 58% of which were musculoskeletal. Follow-up outcomes (MYMOP scores (n = 51) and PGIC scale responses (n = 50)) showed a clinically significant improvement compared to baseline for the majority of health complaints (93% of PGIC scores were 'improved' and 79% MYMOP demonstrated > 1 point change). Total mean MYMOP severity scores were reduced by almost 50% (p < 0.001) after 1-4 weeks, and this was sustained in the medium-to-long term. There was a strong negative correlation (r = -0.767, p < 0.001) between the MYMOP and PGIC scores. A total of 118 health complaints were reported by 85/255 patients who responded to a retrospective questionnaire. Over 84% of patients believed that the treatments they received were 'effective' at addressing their health complaints. Seven minor adverse events were reported and four patients experienced negative treatment outcomes. Although musculoskeletal conditions were the most common, this audit found that patients sought treatment for a wide range of predominantly chronic health complaints, for many of which there is a currently a lack of quality evidence to support the use of acupuncture. Overall, the small sample of patients who responded to outcome questionnaires reported clinically meaningful and sustained improvements.

Patient engagement in designing and publishing research in prostate cancer: a scoping review.

Patients with cancer have the unique ability of being able to offer valuable insights into how cancer therapeutics may impact the overall patient experience and improve clinical outcomes. Patient engagement could therefore contribute to tailoring treatment strategies and research design according to patient needs. This study evaluated patient engagement in prostate cancer research by identifying patient input in the prostate cancer literature. We performed a keyword cluster analysis of articles from multiple databases and congresses in which patients provided input on disease management or were involved in study design, manuscript authorship or presentation of results (patient voice). In total, 112 studies were included. Patients were involved in the design of 11studies and were credited as authors in four studies. This review suggests a lack of meaningful patient involvement in prostate cancer research and publications.

Single stage management of suspected gallbladder cancer guided by intraoperative frozen section analysis: A retrospective cohort study.

The management of radiologically suspected gallbladder cancers (GBC) that lack definitive radiological features usually involves performing a first-stage routine laparoscopic cholecystectomy, followed by an open second-stage liver resection (segments IVB and V) and hilar lymphadenectomy (extended cholecystectomy) if subsequent formal histology confirms a malignancy. Performing a cholecystectomy with an intraoperative frozen section to guide the need for conversion to an extended cholecystectomy as a single-stage procedure has multiple benefits compared to a two-stage approach. However, the safety and efficacy of this approach have not yet been evaluated in a tertiary setting. A retrospective cohort study was performed using a database of all consecutive patients with suspected GBC who had been referred to our tertiary unit. Following routine cholecystectomy, depending on the operative findings, the gallbladder specimen was removed and sent for frozen-section analysis. If malignancy was confirmed, the depth of tumour invasion was evaluated, followed by simultaneous extended cholecystectomy, when appropriate. The sensitivity and specificity of frozen section analysis for the diagnosis of GBC were measured using formal histopathology as a reference standard. A total of 37 consecutive cholecystectomies were performed. In nine cases, GBC was confirmed by intraoperative frozen section analysis, three of which had standard cholecystectomy only as their frozen section showed adenocarcinoma to be T1a or below (n=2) or were undetermined (n=1). In the remaining six cases, malignant invasion beyond the muscularis propria (T1b or above) was confirmed; thus, a synchronous extended cholecystectomy was performed. The sensitivity (95% CI 66.4%-100%) and specificity (95% CI 87.7%-100%) for identifying GBC using frozen section analysis were both 100%. The net cost of the single-stage pathway in comparison to the two-stage pathway resulted in overall savings of £3894. Intraoperative frozen section analysis is a reliable tool for guiding the use of a safe, single-stage approach for the management of GBC in radiologically equivocal cases. In addition to its lower costs compared to a conventional two-stage procedure, intraoperative analysis also affords the benefit of a single hospital admission and single administration of general anaesthesia, thus greatly enhancing the patient's experience and relieving the burden on waiting lists.

Financial assistance and payment plans for underinsured patients shopping for "shoppable" hospital services.

Recent price transparency laws are designed to better inform patients as they compare hospital options and "shop" for health care services. In addition to prices, underinsured patients seeking care need information on financial assistance, discounts, payment plans, and upfront payment requirements to compare the affordability of care across hospitals. Little is known about the availability of this information and the experience of prospective patients seeking it. We contacted a random sample of 10% of general short-term hospitals across the United States in this "secret shopper" telephone study to assess financial options and navigation challenges faced by underinsured patients in need of a non-emergency procedure. The administrative friction was substantial. Most hospitals have 3 siloed offices for (1) financial assistance, (2) payment plans and discounts, and (3) upfront payment requirements. All relevant offices were unreachable in 3 attempted calls at 18.1% of hospitals. Among hospitals with available information, the majority have financial options for patients: 86.7% of hospitals offer financial assistance and 97.0% of hospitals offer payment plans to underinsured patients for non-emergency care. The length and terms of payments plans varied widely for hospital-administered and third-party financing arrangements. Upfront payments were sometimes required, potentially posing barriers for patients without cash or credit access.

Inpatient or Outpatient: Does Initial Disposition Affect Outcomes in Trimalleolar Ankle Fractures?

Background The repair of trimalleolar fractures can be challenging for surgeons and may be managed as an inpatient or an outpatient. However, it is often unclear whether these patients should be admitted immediately or sent home from the emergency department (ED). This study aims to evaluate trimalleolar fractures treated surgically in the inpatient or outpatient settings to evaluate differences in outcomes for these patients. Methods A retrospective chart review of 223 patients undergoing open reduction internal fixation of a trimalleolar ankle fracture was performed from January 2015 to August 2022.Patients were classified by whether the fixation was performed as an inpatient or outpatient. Outcomes of interest included time from injury to surgery, complications, ED returns, and readmissions within 90 days. Results Inpatients had significantly higher ASA scores, BMI, and rates of comorbidities. Inpatient treatment was associated with faster time to surgery (median 2.0 vs. 9.0 days) and fewer delayed surgeries more than seven days from injury (18.4 vs. 67.9%).There were no differences in complications, 90-day ED returns, readmissions, or reoperation between groups. Conclusions Inpatient admission of patients presenting with trimalleolar ankle fractures resulted in faster time to surgery and fewer surgical delays than outpatient surgery. Despite having more preoperative risk factors, inpatients experienced similar postoperative outcomes as patients discharged home to return for outpatient surgery. Less restrictive admission criteria may improve the patient experience by providing more patients with support and pain control in the hospital setting while decreasing the time to surgery.

The Reliability and Quality of YouTube Videos About Isotretinoin Treatment and Suicide.

Seeking health information online has drastically increased. Isotretinoin is one of the agents used to treat acne. In this study, we aimed to investigate the reliability and quality of YouTube videos related to acne treatment, which have been misconception to increase suicide. We used the terms "isotretinoin suicide" and "acne treatment suicide" to search YouTube videos. Videos that were not in English, irrelevant, or devoid of audio were not included. The information in the videos was primarily categorized as reliable or unreliable based on its scientific validation. DISCERN and the Global Quality Score were used to evaluate the videos' overall quality. 200 videos in total were examined. 112 videos were included in the study. 39 videos (34.8 %) were found to be reliable, and 73 videos (65.2%) were found to be unreliable. DISCERN values of videos uploaded by physicians or professional organizations and health information websites were found to be significantly higher. There was a statistically significant negative correlation between DISCERN score and video length and the length of time the video was on YOUTUBE, while a positive correlation was observed between DISCERN score and subscriber. Although videos created by dermatologists have become widespread in recent years, it is still insufficient. Patient experience videos mostly contain information which does not reflect the reality and emphasize that isotretinoin increases the risk of suicide without evidence. As the number of dermatologists posting videos on YouTube increases, the chances of people accessing correct information will increase.

Abstract PO4-17-02: A multicenter, prospective, observational study of patients receiving trastuzumab deruxtecan for the treatment of HER2-positive and HER2-low unresectable and/or metastatic breast cancer: DESTINY-Breast-RESPOND

Abstract Background: Approximately 20% of breast cancer (BC) cases are human epidermal growth factor receptor 2-positive (HER2+; immunohistochemistry [IHC] 3+, IHC 2+/in-situ hybridization [ISH]+), and up to ~50% of patients with primary or metastatic BC (mBC) have HER2-low tumors (IHC 1+, IHC 2+/ISH−), a new therapeutically targetable subset of BC. Trastuzumab deruxtecan (T-DXd) is a HER2-directed antibody-drug conjugate approved in the USA, EU, and other countries for the treatment of adult patients with unresectable or metastatic HER2+ BC who have received a prior anti-HER2-based regimen, or with unresectable or metastatic HER2-low BC who have received a prior chemotherapy (CTx) in the metastatic setting or developed disease recurrence during or within 6 months of completing adjuvant CTx. Approvals followed positive results from the DESTINY-Breast03 and DESTINY-Breast04 clinical trials. In DESTINY-Breast03, T-DXd improved median progression-free survival (mPFS) compared with trastuzumab emtansine (28.8 vs 6.8 months, respectively; P&amp;lt; 0.0001) in previously treated (prior trastuzumab and taxane) patients with HER2+ mBC. In DESTINY-Breast04, T-DXd significantly improved mPFS vs physician’s choice of CTx (9.9 vs 5.1 months, respectively; P&amp;lt; 0.001) in all randomized patients with HER2-low mBC who were previously treated with one or two lines of CTx. Alongside these efficacy benefits, T-DXd has demonstrated an acceptable and generally manageable safety profile. To optimize care and maximize treatment benefit, insights into real-world T-DXd use and safety events of interest, including patient management and experience, are needed. This study aims to describe the effectiveness and tolerability of T-DXd in patients with HER2+ or HER2-low unresectable and/or mBC in a real-world setting. Trial design: DESTINY-Breast-RESPOND (NCT05592483) is a multicenter (120 sites planned as of June 2023), multi-country (HER2+ cohort: several regions globally; HER2-low cohort: North America only), prospective, observational study characterizing real-world clinical use, effectiveness, tolerability, and patient experience among adults who initiated T-DXd monotherapy, per standard of care, for HER2+ (second line or earlier) and HER2-low unresectable and/or mBC (T-DXd not provided by study sponsor). The decision to initiate T-DXd will be made by the physician prior to, and independent from, participation in this study. Approximately 750 patients with HER2+ and 250 patients with HER2-low disease will be enrolled. Patients must have received prior treatment with a trastuzumab-containing regimen in the metastatic setting or have evidence of disease progression within 6 months of neoadjuvant or adjuvant treatment (HER2+ cohort), or prior CTx in the metastatic setting or have evidence of disease progression within 6 months of adjuvant CTx (HER2-low cohort). Data will be collected via chart abstraction, patient-reported outcome questionnaires on tolerability and safety (PGI-TT, NCI PRO-CTCAE, and EORTC IL19), and a daily patient nausea/vomiting symptom diary. Endpoints will be analyzed separately for HER2+ and HER2-low cohorts. The primary endpoint of interest is time to next treatment from T-DXd initiation, a measure of real-world effectiveness. Other important endpoints include treatment patterns, safety events of interest (nausea/vomiting, fatigue, alopecia, interstitial lung disease/pneumonitis, left ventricular ejection fraction decrease) and their management, time to T-DXd discontinuation, and patient-reported tolerability. Patients will be observed until end of study (~60% of patients receive subsequent treatment or have died), withdrawal from study, or loss to follow up, whichever occurs first. Citation Format: Joyce O'Shaughnessy, Reva Basho, Maryam Lustberg, Gary H Lyman, Manoj Prahladan, Gareth D. James, Della Varghese, Flavia Lujan, Hans Tesch. A multicenter, prospective, observational study of patients receiving trastuzumab deruxtecan for the treatment of HER2-positive and HER2-low unresectable and/or metastatic breast cancer: DESTINY-Breast-RESPOND [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-17-02.

Abstract PO5-12-07: Analyzing Patient Experiences with Adjuvant Hormone Therapy for Early Breast Cancer Treatment via NLP/ML on Social Media: Symptoms and Their Mitigation

Abstract Understanding the early breast cancer (eBC) patient experience of disease and treatment is critical to addressing unmet patient needs, improving outcomes, and informing the next wave of drug development. Traditional approaches, such as interviews or focus group studies, are resource intensive and have limitations in reflecting the diverse experiences of patients with different disease characteristics, treatments, and sociodemographic backgrounds, and in detecting rare severe events that could potentially lead to therapy discontinuation. To overcome these limitations, we have developed a semi-automated approach utilizing Natural Language Processing (NLP) and Machine Learning (ML) methods in application to public patient forums to extract patient insights. Specifically, we analyzed 500,000 anonymized posts from the BreastCancer.org forum, utilizing Transformer-based methods to identify posts related to eBC patient experiences treated with standard hormonal therapies (HT). First, a novel ML-based model identified posts related to eBC adjuvant HT. For those, patient demographics, symptoms and their severity, and symptom management strategies such as exercise and yoga were subject to further analysis. Out of 362,074 relevant eBC posts, 32 symptoms and 9 impacts were significantly associated with at least one of the six hormonal therapies we considered. Hot flushes (relative risk [RR]: 6.70; 95% CI: 3.36–13.36), arthralgia (RR: 6.67; 95% CI: 3.53–12.59), weight increase (RR: 4.83; 95% CI: 3.20–7.28), mood swings (RR: 7.36; 95% CI: 5.75–9.42), insomnia (RR: 4.76; 95% CI: 3.14–7.22), and depression (RR: 3.05; 95% CI: 1.71–5.44) demonstrated the strongest associations. Severe headache, dizziness, back pain, and muscle spasms showed significant associations with ≥1 HT despite their low overall prevalence in eBC posts. Notably, posts contained a wide range of symptoms severity, including rarely seen symptoms in smaller patient pools, such as severe night hot flashes leading to treatment discontinuation. Symptoms/impacts mentioned in association with exercise and yoga as a way for symptom mitigation included hot flashes, arthralgia, fatigue, anxiety, depression, and pain. Of those posts, 53.3% to 82.5% reported positive or neutral sentiments for exercise, and 22.2% to 100.0% for yoga. For posts specifically mentioning the management of side effects of HT, between 50.0% and 63.5% had a positive sentiment associated with exercise concerning each of the symptoms/impacts with a lower positive impact related to yoga (between 11.1% and 43.0% of posts). Posts discussing pain management and exercise included a higher proportion of negative feedback, versus positive sentiment for depression. Posts related to yoga as an HT symptom mitigation strategy had a higher prevalence of negative sentiments for anxiety and depression. Our proposed ML/NLP-based approach to collecting patient feedback from publicly available forums complements standard qualitative methods by enabling the scalable extraction of insights from hundreds of thousands of online conversations that could span a broad diversity of symptoms and well-being reflections. Furthermore, our findings suggest the potential value of informing clinical outcome assessment (COA) measurement for clinical trials, alone and in combination with standard qualitative research approaches to guide the next clinical development. Overall, our study highlights the significant potential of NLP and ML to address the critical need to better understand the eBC patient experience of disease and treatment to improve outcomes for patients. Citation Format: Sameet Sreenivasan, Chao Fang, Emuella Flood, Natasha Markuzon, Jasmine Sze. Analyzing Patient Experiences with Adjuvant Hormone Therapy for Early Breast Cancer Treatment via NLP/ML on Social Media: Symptoms and Their Mitigation [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-12-07.

Abstract PO5-19-04: EVOLVE: An Ambispective, Patient-Centered, Real-World Early-Stage Breast Cancer Study in the United States

Abstract Background: While survival for patients with early breast cancer (eBC) has greatly improved with earlier detection and modern treatments, the risk of recurrence and long-term/late treatment-related adverse events (AEs) remain concerns for many patients. Contemporary real-world data are needed to understand current diagnostic pathways, treatment patterns and toxicities, quality of life, and patient experience to better characterize eBC care and knowledge gaps and establish important hypotheses to test in prospective trials, with the ultimate goal to improve both treatment and outcomes for patients with eBC. Study design: PicnicHealth and AstraZeneca are collaborating to build a real-world observational eBC cohort composed of de-identified medical records data supplemented with patient-reported outcomes (PROs), including patient-reported social determinants of health (SDoH). Patients recruited from multiple channels, such as digital marketing and community partnerships, will consent to participate and sign HIPAA authorization for PicnicHealth to collect their medical records from all providers and sites of care in the United States. All available retrospective medical records in any format will be retrieved, and records will continue to be collected for patients prospectively following enrollment. Disease-specific information will be abstracted using PicnicHealth’s human-in-the-loop machine learning abstraction platform. Patients will have access to their records in the form of a searchable and shareable digital timeline. Additional data, including but not limited to symptoms, quality of life and treatment experience will be collected through surveys. The first patient was enrolled in May 2023. Patients will be followed for ≥8 years or until withdrawal or death, whichever occurs first. Eligibility criteria: Patients with stage I-III breast cancer diagnosed ≤3 years before enrollment, who onboard to the PicnicHealth platform, consent to participate, sign HIPAA authorization for medical record collection, and provide ≥1 provider/care site for record retrieval will be included in the cohort. Specific aims: The cohort aims to generate contemporary real-world data relevant to understanding demographic and clinical characteristics, SDoH, diagnostic/testing pathways, treatment patterns, and clinical outcomes, including AEs and AE management. Specifically, demographic and SDoH differences in management, outcomes, and the patient experience during and following eBC diagnosis and treatment will be evaluated. The cohort design and the data collected will evolve as the eBC landscape evolves to continuously address new research questions around diagnosis, management, outcomes, and patient experience. Statistical methods: The demographics, SDoH, clinical characteristics, treatments, healthcare resource utilization, eBC outcomes, such as recurrence and progression, and patient experience will be summarized for the cohort overall and by pre-determined subgroups using descriptive statistics. Additional analyses include, but are not limited to, evaluating the impact of key exposures, such as SDoH, on treatment and diagnostic pathways, treatment compliance, clinical outcomes, and PROs. All analyses will be prespecified in study-specific statistical analysis plans. Present accrual and target accrual: At least 3,000 patients will be enrolled in the PicnicHealth eBC Cohort. As of July 2023, 843 patients have onboarded to the PicnicHealth platform and will be screened for eligibility into the eBC registry cohort. Contact information for people with a specific interest in the study: For additional information, please contact breastcancer@picnichealth.com. Citation Format: Haley Friedler, Meghan Tierney, Melinda Baker, Gillian Hanson, Josefa Briceno, Karen Smith, Michele Baber, Kara Glover, Xiaoqing Xu, Kellie Ryan, Zulikhat Segunmaru, Clara Lam, Maryam Lustberg, N. Lynn Henry, Rachel Greenup, Marianna Chavez, Joseph Unger, Alice Ho, Deborah Collyar. EVOLVE: An Ambispective, Patient-Centered, Real-World Early-Stage Breast Cancer Study in the United States [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-19-04.

Abstract PO4-12-07: INSTITUTIONAL EXPERIENCE IN PATIENTS WITH EARLY BREAST CANCER WHO RECEIVED CARDIOTOXIC THERAPY IN CARDIONCOLOGY UNIT

Abstract Introduction: Early breast cancer (eBC) is the most frequent malignancy diagnosed in women worldwide; fortunately, survival is increasing related to early diagnosis and the incorporation of new drugs. In this scenario, preventing long-term toxicities become essential. Cardiac adverse events related to anthracyclines or trastuzumab such as reduction in left ventricular (LV) systolic function and clinical heart failure (HF), are well known and are the leading cause of morbidity in breast cancer survivors. Cardioprotective strategies and early diagnoses of asymptomatic cardiac dysfunction are essential to optimized management and prevention of overt cardiovascular (CV) disease. We made a specific cardiac assessment within an Oncocardiology multidisciplinary Unit in patients receiving anticancer therapies. We present the experience in patients with eBC treated with anthracyclines, trastuzumab or both in the past five years. Materials and Methods: We conducted an institutional, interventional, prospective study in patients who received anthracyclines, trastuzumab or both according to the standard of care (SoC) in eBC. Basal CV risk stratification included lipid profile, glycated haemoglobin, high-sensitive troponin T (hs-TnT) and N-terminal ProB-type natriuretic peptide (NT-ProBNP) was done. Image assessment was done by echocardiogram (echo), including myocardial deformation assessed by speckle tracking (STRAIN). Follow-up was done according to anthracycline or trastuzumab therapy with echo and cardiac biomarkers during the systemic therapy and at the end of anticancer treatment, 1, 2 and 5 years after. Patients with uncontrolled CV risks factors according to local protocol, asymptomatic cardiac dysfunction defined as decreased strain (&amp;gt;15% compared with baseline) or increased cardiac biomarkers (Hs-TnT &amp;gt;14 at baseline or x3 basal value during the follow-up; NT-ProBNP &amp;gt; 300 in patients with &amp;lt; 50y; &amp;gt; 600 in patients between 50-75-y or &amp;gt;900 in patients &amp;gt; 75 years or older) or patients who develop heart failure during the treatment or follow-up were referred to cardiologist. Results: between 2018 and 2022, 1125 patients were diagnosed with eBC in our institution, and 435 patients received systemic treatment with anthracyclines, trastuzumab or both. During the study period, 165 of these patients were referred to the cardio-oncologist. 60% received treatment with anthracyclines, 36% with trastuzumab and 4.1% with both. The median age was 58(±23.2), 60% had previous CV risk factors. The main reason to refer patients to the cardio-oncologist was asymptomatic cardiac dysfunction and uncontrolled CV risk factors. (Table 1). 60% of patients initiated angiotensin-converting-enzyme inhibitors or Beta-blockers, and only two patients stopped anticancer therapy due to severe cardiac dysfunction. The period of high risk of developing cardiotoxicity was the first year after the end of treatment. Conclusion: multidisciplinary evaluation within a cardio-oncology unit is useful to optimize CV risk factors and to detect asymptomatic cardiac dysfunction in patients receiving cardiotoxic drugs. Table 1. Main reasons to refer patients to cardiologist. Citation Format: Tamara Martos, Laia Carla Belarte-Tornero, Mireia Ble, Eva Gimeno, Laura Sanhauja, Felicidad Martines-Medina, Maria Martinez-García, Maria Castro-Henriques, Joan Albanell, Sonia Servitja. INSTITUTIONAL EXPERIENCE IN PATIENTS WITH EARLY BREAST CANCER WHO RECEIVED CARDIOTOXIC THERAPY IN CARDIONCOLOGY UNIT [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-12-07.

Abstract PO3-16-06: Perceptions and experiences of patients and healthcare providers on genetic testing and treatment of early breast cancer: qualitative findings

Abstract Background: Olaparib is approved as adjuvant therapy for high-risk HER2-negative early breast cancer (eBC) patients with germline BRCA mutations (BRCAm). Understanding patients’ preferences for genetic testing and treatment in the context of shared decision-making is needed to support optimal care in eBC. This study elicited the perspectives of patients with eBC and healthcare providers (HCP) treating eBC regarding treatment decision-making, and drivers and barriers to BRCA testing. Methods: Semi-structured interviews were conducted in the United States from Jan-Feb 2023 with women (n=12) diagnosed with eBC from 2017-2021. Community and academic oncologists treating eBC (n=12) and genetic counselors (GCs; n=8) were also interviewed. Patients who were tested (n=7) and untested (n=5) for BRCAm were included. A content and thematic analysis was performed which identified key factors from the data; these analyses provided both a range and common responses that may influence BRCA testing and treatment decisions. Results: BRCA-tested patients considered testing beneficial. In choosing to receive testing, &amp;gt;50% of patients reported HCP recommendation (n=7) and the opportunity to have “all of the information” about their eBC (n=7) as strong influencers. Patients declined genetic testing noting fear around negative impact to their insurance coverage (n=2) or mental health (n=3), or if they did not have family who would benefit from the information. Cost did not strongly influence testing choice. In choosing a treatment, patients sought to maintain their quality of life (QoL) with fewer side effects while minimizing chance of recurrence. They expressed the dual goals of normalcy during treatment, including curtailing side effects that impact QoL, and returning to normalcy after treatment (n=7). Patients were willing to accept unpleasant side effects to have a more effective treatment if those side effects do not severely impact their QoL and the treatment is highly effective (n=9). Side effects that may lead to hospitalization were the least accepted as they disrupt normalcy. HCPs reported that patients eagerly accept testing and face minimal familial or access barriers to testing. HCPs observed that among their non-Medicare patients, testing is usually covered by insurance with minimal out-of-pocket costs, thus alleviating financial constraints observed in previous years. HCPs believe BRCA testing is driven by updated hereditary cancer testing guidelines (e.g., NCCN), lower testing costs, closer collaborations of physicians and genetic counselors, and greater awareness among patients. HCPs reported that they embrace patient-led decision-making in eBC, especially as it relates to patients with BRCAm considering additional prophylactic surgery, and GCs further emphasized patient autonomy. Oncologists mentioned that they discuss risk status starting at diagnosis and these conversations evolve over the patient journey as new information emerges. In HR+ eBC, oncologists offered most patients with BRCAm adjuvant olaparib, which they perceive as well tolerated. In triple-negative eBC, oncologists opted for neoadjuvant Keytruda regimen prior to considering adjuvant olaparib for gBRCAm patients. Conclusions: Patients value information that empowers them to achieve their goals of normalcy and remission that can be achieved by addressing QoL, side effects, and patients' goals of living “normally”. Though prior research highlighted insurance coverage and costs as significant barriers to BRCA testing, results from this study suggest that cost was not a major factor in testing decisions. Prior barriers to testing access have been mitigated making it more available and affordable than in the past, which could be broadly communicated to patients and HCPs to minimize misperception. Citation Format: Jagadeswara Earla, Emily Mulvihill, Josh Lankin, Lauren Howell, Alex Kissling, Weiyan Li, Jaime Mejia. Perceptions and experiences of patients and healthcare providers on genetic testing and treatment of early breast cancer: qualitative findings [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-16-06.

Qualitative service evaluation of a rural midwife-led ultrasound service: listening to women

Background/Aims Patient experience is needed to understand if a service is meeting the needs of the population it serves. In rural areas, accessing maternity services can be challenging for women. Local provision should be explored and consistently reviewed to adapt to changing social requirements and expectations. The aim of this study was to examine a rural midwifery-led ultrasound service 5 years after implementation and post COVID-19, to ascertain if the service provides a positive service user experience. Methods A qualitative service evaluation was carried out using semi-structured interviews with four service users. Data were analysed using content analysis. Results Positive aspects of the service included continuity of care, communication, time to care, financial benefits and inclusivity in care and care decisions. It was noted that the ultrasound service was in the opposite direction from their homes to the obstetric service if participants needed to be referred for consultant opinion the same day. The significant underlying theme was the positive impact on mental wellbeing and patient experience in pregnancy when attending the service. Conclusions There was a high level of satisfaction with the service. Engagement of a broader spectrum of women would provide deeper insight into the service and robust evidence for any service development.

Patient experiences and needs in cancer care– results from a nationwide cross-sectional study in Germany

BackgroundPatient-centredness has become a central quality indicator for oncology care. Elements include shared decision-making, patient navigation and integration of psychosocial care, which impact patient-reported and clinical outcomes. Despite efforts to promote patient-centred care in Germany in recent decades, implementation remains fragmented. Further, research on patient experiences with cancer care and its determinants is limited. Therefore, this study examines which patient- and facility-specific factors are associated with patient-centred quality care delivery.MethodsA cross-sectional study was conducted among 1,121 cancer patients in acute treatment, rehabilitation, and aftercare for different cancer entities across Germany. A participatory developed questionnaire was used. Outcome measures were the quality of physician-patient interaction and provision of psychosocial care during acute care. Predictors comprised patient-specific characteristics and treatment facility-specific factors. Multiple linear regression and multivariate binary logistic regression analyses were performed. In addition, a content analysis of open-ended comments on the patients’ overall cancer care needs was applied.ResultsMultiple linear regression analysis showed recent diagnosis (β=−0.12, p = < 0.001), being male (β=−0.11, p = 0.003), and having a preference for passive decision-making (β=−0.10, p = 0.001) to be significantly associated with higher interaction quality, but not age, education and health insurance type. An overall low impact of patient characteristics on interaction quality was revealed (adj. R2 = 0.03). Binary logistic regression analysis demonstrated the availability of central contact persons (OR = 3.10, p < 0.001) followed by recent diagnosis (p < 0.001), having breast cancer (p < 0.001) and being female (OR = 1.68, p < 0.05) to significantly predict offering psycho-oncological counselling to patients in acute care facilities. The availability of peer support visiting services (OR = 7.17, p < 0.001) and central contact persons (OR = 1.87, p < 0.001) in the care facility, breast cancer diagnosis (p < 0.001) and a higher level of education (p < 0.05) significantly increased the odds of patients receiving information about peer support in the treatment facility. Despite relatively satisfactory quality of physician-patient interactions in cancer care (M = 3.5 (± 1.1)), many patients expressed that better patient-centred communication and coordinated, comprehensive cancer care are needed.ConclusionThe findings reflect effective developments and improvements in cancer care and suggest that patients’ social characteristics are less decisive for delivering patient-centred quality care than systemic factors surrounding the care facilities. They can serve to inform oncology care in Germany.

Abstract PO4-10-07: Understanding Psychological distress in patients prior to breast cancer diagnosis:Mixed Methods Study

Abstract Purpose:While the association between diagnosis of breast cancer and post-diagnosis psychological distress has been well documented, data regarding pre-diagnosis psychological distress in the breast cancer population are limited. The purpose of the current study is to measure the distress levels of patients prior to breast cancer diagnosis, to identify the categories of distress they have, and describe the experience of distress of patients before diagnosis. Methods: This study uses a mixed research method of cross-sectional survey and qualitative interviews. In the quantitative part, a cross-sectional survey of 118 patients with completed breast biopsies awaiting pathological diagnosis was conducted using the National Comprehensive Cancer Network’s (NCCN’s) Distress Thermometer(DT) and Problem List (PL), In the qualitative part, 15 patients were invited using convenient and purposive sampling. Data was collected using a semi-structured face-to-face interview and recorded. The transcribed text was analyzed using Colaizzi's phenomenological method. Results: The results reveal that 63.6% of patients reported a higher level of psychological distress (n=75, scoring≥4).Most patients had emotional (98%) or physical (64%) problems. Among these, worry or anxiety (47.5%), fear (33.1%), finances (21.2%), sadness and depression(18.6%), and grief or loss(15.3%) were the most frequently reported problems. Multivariate logistic regression analysis showed that the factors associated with psychological distress before the diagnosis of breast cancer patients were age, education level. The experience of patients before diagnosis emerged five themes: Very high psychological distress index; Strong uncertainty; The demand of information; Guilt for the family; Hoped for psychological support from the health care team. Conclusions: Psychological distress is prevalent prior to breast cancer diagnosis and may merit early intervention. Understanding patients’ distress may help guide future psychosocial needs assessments and interventions to promote patient quality of life. Table 1 Sample characteristics (n=118). Table 2 Univariate analysis of predictors associated with psychological distress Table 3 The binary logistic regression model of psychological distress Citation Format: Yan Gao, Jinnan Gao. Understanding Psychological distress in patients prior to breast cancer diagnosis:Mixed Methods Study [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-10-07.

Abstract PO5-10-04: Rare to Care: Assessing Awareness and Health Disparity Factors Related to Inflammatory Breast Cancer in the Primary Care Setting

Abstract Background: The diagnosis of inflammatory breast cancer (IBC) is life-changing as it is a rare, highly aggressive breast cancer variant designated by NIH as a cancer health disparity. Given the unique presentation of diffuse tumor cell spread in the absence of a solid mass, which is not easily detected by self-breast exams or mammograms, IBC patients often face delays in diagnosis and treatment. Therefore, an individualized and a multifaceted approach that addresses the unique needs of the patient with input from both providers and the community is an unmet need. To address this, we are investigating the current knowledge and perspectives of providers and public related to rare cancers like IBC in primary care practices. Methods: Researchers and advanced practice providers collaboratively drafted and piloted the initial surveys with guidance from a Community Advisory Board, comprising of members from academic institutions, primary care practices in urban and rural setting, topical experts, and patient advocates, in order to assess primary care providers (PCPs) and general public knowledge, attitudes and health seeking practices related to rare cancer like IBC. Results: The surveys are currently being administered statewide specific to PCPs or public via cognitive interviews and/or using an online survey tool within North Carolina as a model of a large state (100 counties) with a range of population densities, race, ethnicities, and environmental burdens. Challenges elaborated at the PCP level include communicating rare cancer information, gaps in confidence in diagnosing IBC, timely follow-up with patients, and accessing specialty care and an unmet need for developing PCP educational modules to improve guideline-concordant care. Public data analyzed to date is from a Duke Outpatient Clinic, an urban ambulatory care teaching practice serving primarily low-income, medically complex patients in Durham (n=14) included 69% Black, 93% female, with 68% in households earning under $50,000 annually). 71% had not heard of IBC; 64% did not identify high BMI as a risk factor; 36% did not know there is differential race-related incidence; 74% did not recognize IBC-specific symptoms. 50% noted lack of insurance, transportation, religious reasons, or difficulty or fear of talking to a physician contributed in general delay in seeking health care. Most importantly, 93% expressed feeling comfortable sharing information about IBC with others. Majority expressed that adding visual aids and providing educational materials about IBC at the time of survey would be helpful. Conclusions: The results highlight the role of PCPs, including physicians, physician assistants, and nurse practitioners, who are often the first point of contact when patients begin to notice signs or symptoms. The general public and the patients with common breast cancer subtypes can provide valuable insight into their own health care experiences, what works for them and what barriers they face in their communities, which can be used to compare with experience of patients with IBC and other rare cancers. Overall, the lessons from this study inform the development of effective tools to educate PCPs and patients for this understudied cancer that contributes to disparities in clinical and survival outcomes in minoritized and marginalized populations. Support in part from the Duke Cancer Institute pilot as part of the P30 Cancer Center Support Grant (P30CA014236) and Duke School of Medicine Behavioral Health and Survey Research Core Facility Award (GRD, ANT); Duke Advanced Practice Provider Leadership Institute scholarship (VK, GRD), Department of Surgery (GRD); Duke Ahead Education grant; NIH/NCI RO1CA264529-01 (GRD); ACS Mission Boost grant MBG-20-141-01-MBG (GRD), Nakayama Public Service Scholar Award (AB). Citation Format: Gayathri R Devi, Lawrence Greenblatt, Rashmi Saincher, Valerie Keck, Beau Blass, Sarah Weaver, Alexandra Bennion, Anh Tran. Rare to Care: Assessing Awareness and Health Disparity Factors Related to Inflammatory Breast Cancer in the Primary Care Setting [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-10-04.

Abstract PO5-10-09: Capturing Experiences: Navigating Breast Cancer Treatment of Nigerian Patients and Healthcare Providers Using Qualitative Interviews

Abstract Introduction A notable shift has occurred in medical relationships, placing greater emphasis on the role of patients within the healthcare system. A nascent body of literature in the US captures the experiences of patients following a diagnosis, but this is lacking in Nigeria. We used Systems Engineering Initiative for Patient Safety (SEIPS 2.0) as a theoretical framework from the discipline of human factors that serves as a guide for characterizing complex sociotechnical systems comprised of factors, work processes, and outcomes - with the patient and clinicians at the center. We specifically focused on the patient work network, which refers to individuals and communities that play role in supporting patient work. The objective of this study was to elicit the experiences of Nigerian breast cancer patients and healthcare providers by qualitative interviews and characterize productive and counterproductive activities of the patient work network. Methods The study was approved by the IRB. We used snowball sampling and social media to recruit Nigerian breast cancer patients and health care providers with experience treating breast cancer. One researcher conducted interviews that lasted 30–60 min using teleconferencing technology and an interview guide developed for this study. Questions for both patients and healthcare providers covered topics such as patient response to diagnosis, barriers and facilitators to care including people and communities within the patient’s network. We calculated descriptive statistics for demographics. Using thematic analysis, we carried out the analysis in the following stages: data review, category coding and data extraction, and synthesis and integration of findings. Results We interviewed 18 female patients (29-67 yrs old) and 6 healthcare providers (31-42 yrs old; 3 males). Twelve patients received treatment in urban areas and 6 in rural. Four patients had a bachelor's degree. Healthcare providers included primary, specialty, palliative, treatment, diagnostic care. We highlight a subset of the dataset with focus on productive versus unproductive work conducted by family and by religious community, with unproductive defined as potentially having negative impact on the patient and their experience (Table 1). Providers stated that patients who receive family support exhibit better health outcomes compared to those who do not. Providers shared that religious community can perpetuate patient denial in their diagnosis. Both patients and providers discussed an inclination towards seeking traditional care. Despite recognizing the challenges and pressures faced by patients, providers lacked in-depth understanding of the specific experiences patients encountered. Conclusion Our findings highlight the role of family and religious community in conducting activities that are both productive and unproductive facilitating productive activities and its influence on the decision-making process of patients. Alternatively, both family and religious community engage in activities counterproductive to the patient and their illness. Findings emphasize the importance of comprehensive support systems, education, and targeted interventions to improve the experiences and outcomes of Nigerian breast cancer patients. Effective strategies should address cultural beliefs, empower patients to make informed decisions, and enhance provider knowledge regarding the unique challenges faced by patients within the identified barriers. Table. Productive versus unproductive work conducted by family and by religious community Citation Format: Blessing Nwachukwu, Elizabeth Papautsky. Capturing Experiences: Navigating Breast Cancer Treatment of Nigerian Patients and Healthcare Providers Using Qualitative Interviews [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-10-09.

Leveraging Decentralized Clinical Trial Management Systems (dCTMS) to Advance Science: Exploring Challenges Related to the Diffusion of Innovation and Its Execution.

Decentralized clinical trials (DCTs) recently gained attention in research necessary for drug development. While the COVID-19 pandemic proved to be a challenging time in this arena, drug development was a critical area of emphasis in the rapid advancement of vaccines. The DCTs were necessary to allow research activities to occur across many locations. The use of DCTs can profoundly impact reshaping healthcare by enabling participants to partake in clinical trials remotely; however, implementation challenges must be considered as technology expands. A working group of participants was assembled during an interactive learning exercise at the Conv2X conference (2023) to explore challenges related to the diffusion of innovation among key stakeholders. Pain points experienced with using and implementing technologies were identified, and an innovative solution using a blockchain-anchored option was presented. Participants were divided into three stakeholder groups: patients, payers, and pharmaceutical sponsors. After a time of discussion, the groups reconvened for review. Several themes that can be supported by blockchain technology emerged. These include enhanced efficiencies, patient experience, and demographic diversity, as well as data integrity, privacy, security, and cost-effectiveness. Future research might focus on strategies to facilitate the adoption of the idea across key stakeholder groups.