Patient Perspectives Research Articles

Pediatric Cancer Communication on Twitter: Natural Language Processing and Qualitative Content Analysis.

During the COVID-19 pandemic, Twitter (recently rebranded as "X") was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. This study aimed to examine pediatric cancer-related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer-related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer.

From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.

Tumor mutation profiling (MP) is often conducted on tissue from biopsies conducted for clinical purposes (diagnostic tissue). We aimed to explore the views of patients with cancer on who should own tumor biopsy tissue, pay for its storage, and decide on its future use; and determine their attitudes to and predictors of undergoing additional biopsies if required for research purposes. In this mixed methods, cross-sectional study, patients with advanced solid cancers enrolled in the Molecular Screening and Therapeutics Program (n = 397) completed a questionnaire prior to undergoing MP (n = 356/397). A subset (n = 23) also completed a qualitative interview. Fifty percent of participants believed they and/or relatives should own and control access to diagnostic tissue. Most (65.5%) believed the government should pay for tissue preparation. Qualitative themes included (1) custodianship of diagnostic tissue, (2) changing value of tissue across time and between cultures, (3) equity regarding payment, and (4) cost-benefit considerations in deciding on additional biopsies. Policy and regulation should consider patient perspectives. Extension of publicly funded health care to include tissue retrieval for clinical trials should be considered.

Healing Health Care Disparities: Development and Pilot Testing of a Virtual Reality Implicit Bias Training Module for Physicians in the Context of Black Maternal Health.

Grounded in communication models of cultural competence, this study reports on the development and testing of the first module in a larger virtual reality (VR) implicit bias training for physicians to help them better: (a) recognize implicit bias and its effects on communication, patients, and patient care; (b) identify their own implicit biases and exercise strategies for managing them; and (c) learn and practice communicating with BIPOC patients in a culture-centered manner that demonstrates respect and builds trust. Led by communication faculty, a large, interdisciplinary team of researchers, clinicians, and engineers developed the first module tested herein focused on training goal (a). Within the module, participants observe five scenes between patient Marilyn Hayes (a Black woman) and Dr. Richard Flynn (her obstetrician, a White man) during a postpartum visit. The interaction contains examples of implicit bias, and participants are asked to both identify and consider how implicit bias impacts communication, the patient, and patient care. The team recruited 30 medical students and resident physicians to participate in a lab-based study that included a pretest, a training experience of the module using a head-mounted VR display, and a posttest. Following the training, participants reported improved attitudes toward implicit bias instruction, greater importance of determining patients' beliefs and perspectives for history-taking, treatment, and providing quality health care; and greater communication efficacy. Participants' agreement with the importance of assessing patients' perspectives, opinions, and psychosocial and cultural contexts did not significantly change. Implications for medical education about cultural competency and implicit bias are discussed.

"You Take This Day by Day, Come What May": A Qualitative Study of the Psychosocial Impacts of Living with Duchenne Muscular Dystrophy.

Studies have reported health-related quality-of-life impacts of Duchenne muscular dystrophy (DMD); however, further research is needed to understand how those with DMD experience their condition and how psychosocial impacts evolve over time in response to disease progression. This qualitative study explores the social and emotional implications of key transitions, challenges and adaptations throughout the disease course from the perspective of patients and family caregivers. Semi-structured interviews were conducted with men and boys with DMD, and/or their caregivers, in the USA. Thematic analysis was used to examine patterns in data collected across the interviews. Nineteen participants were included. Three major themes were identified: (1) barriers to participation are multifaceted; (2) an emotional journey shaped by 'inevitable progression;' (3) family provides critical tangible and emotional support. This study illustrates that psychosocial impacts of DMD are shaped by knowledge of the condition's natural history alongside other factors including the extent of social barriers, personal growth and adaptation, and family support. Findings provide insight into the strength and resilience with which individuals and their families respond to daily challenges and major clinical milestones and highlight the relative importance of loss of upper limb function as a transition in DMD affecting health-related quality-of-life.

Evaluating the clinical benefit of pembrolizumab as a first-line agent in advanced solid tumors: A comprehensive review.

The study evaluates the first-line application of pembrolizumab in metastatic non-small-cell lung cancer (mNSCLC), head and neck squamous cell cancer (HNSCC), gastric cancer, and renal cell carcinoma. Utilizing the European Society for Medical Oncology Magnitude of Clinical Benefit Scale (ESMO-MCBS) and the American Society of Clinical Oncology Value Framework (ASCO-VF), the analysis incorporates data from pivotal KEYNOTE trials. The study systematically assessed the clinical benefit of pembrolizumab in advanced solid malignancies through nine randomized controlled trials, one of which comprised two experimental arms. Data extraction from primary sources was conducted from PubMed, ASCO, and ESMO publications. Utilizing ESMO-MCBS and ASCO-VF forms, the evaluation focused on clinical benefit, toxicity, and bonus points, with discrepancies resolved through consensus discussions. Nine first-line indications for pembrolizumab received Food and Drug Administration approval for metastatic solid tumors between 2018 and 2023. Notable distinctions in ESMO-MCBS grades revealed seven trials with substantial clinical benefit (grades 5 to 4) and three with moderate to negligible benefit (grades 3 to 1). Bonus points, primarily based on the tail of the curve, were allocated to three trials for overall survival, one for progression-free survival, and one for a significant improvement in quality of life. Our evaluation of pembrolizumab across diverse cancers, especially in mNSCLC and HNSCC, revealed varied outcomes and challenges in clinical benefit interpretation. The assessment of clinical benefit, incorporating quantitative and qualitative endpoints, underscores the need to consider survivorship outcomes and patient perspectives for a comprehensive understanding.

Patient perspectives in adverse event reporting after vaginal apical prolapse surgery.

Many clinical trials use systematic methodology to monitor adverse events (AE) and determine grade (severity), expectedness, and relatedness to treatments as determined by clinicians. However, patient perspective in the process remains lacking. To compare clinician versus patient grading of AE severity in a urogynecologic surgical trial. Secondary objectives were to estimate the association between patient grading of AEs with decision-making and quality of life outcomes and to determine if patient perspective changes over time. This was a planned supplementary study, "Patient-Perspectives in Adverse Event Reporting" (PPAR), to a randomized trial comparing 3 surgical approaches to vaginal apical prolapse. In the parent trial, AEs experienced by patients were collected per a standardized protocol every 6 months where clinicians graded AE severity (mild, moderate, severe/life threatening). In this sub-study, we obtained additional longitudinal patient perspectives for 19 predetermined "PPAR AEs". Patients provided their own severity grading (mild, moderate, severe/very severe/ life threatening) at initial assessment and at 12 and 36 months postoperatively. Clinicians and patients were masked to each other's reporting. The primary outcome was the interrater agreement (kappa statistic, κ) for AE severity between the initial clinician and patient assessment, combining patient grades of mild and moderate. Association between AE severity and the Decision-Regret Scale (DRS), Satisfaction with Decision Scale (SDS), the Short-Form Health Survey-12 (SF-12), and Patient-Global Impression of Improvement (PGI-I) scores were assessed utilizing Spearman's correlation coefficient (ρ) for continuous scales, Mantel-Haenszel chi-squared test for PGI-I, and T-tests or chi-squared tests comparing assessments of severe vs other grades. To describe patient perspective changes over time, the intra-observer agreement was estimated for AE severity grade over time using weighted kappa-coefficients. Of 360 patients randomized, 219 (61%) experienced a total of 527 PPAR AEs (91% moderate and 9% severe/life threatening by clinician grading). Mean patient age was 67 years, 87% were White, and 12% Hispanic. Of patients reporting any PPAR event, the most common were urinary tract infection (61%), de novo urgency urinary incontinence (35%), stress urinary incontinence (22%), and fecal incontinence (13%). Overall agreement between clinician and participant grading of severity was poor (κ=0.24 (95%CI 0.14, 0.34). Of 414 AEs clinicians graded as moderate, patients graded 120 (29%) mild, and 80 (19%) severe. Of 39 AEs graded severe by clinicians, patients graded 15 (38%) mild or moderate. Initial patient grading of the most severe reported AE was mildly correlated with worse DRS (ρ=0.2, p=0.01), SF-12 (ρ=-0.24, p<0.01) and PGI-I (p<0.01). There was no association between AE severity and SDS. Patients with an initial grading of "severe" had more regret, lower quality of life, and poorer global impressions of health than those whose worst severity grade was mild (p<0.05). Agreement between the patients' initial severity and later timepoints was fair at 12 months (κ=0.48 (95% CI 0.39, 0.58)) and 36 months (κ=0.45 (95% CI 0.37, 0.53)). Clinician and patient perceptions of AE severity are discordant. Worse severity from the patient perspective was associated with patient-centered outcomes. Including the patient perspective provides additional information for evaluating surgical procedures.

Patient satisfaction and sexual issues in vulvar lichen sclerosus treatment: a monocentric certified dysplasia unit survey analysis.

Vulvar lichen sclerosus (VLS) is an underestimated chronic disease. It can cause significant symptom burden and sexual dysfunction. This study aimed to evaluate patient satisfaction and current challenges in the management of VLS in a certified dysplasia unit, particularly during the COVID-19 pandemic. This survey analyzed patients who had been diagnosed with VLS and treated at our DKG-certified dysplasia unit. The study was conducted during the COVID-19 pandemic in the Department of Gynecology and Obstetrics at the University of Aachen. The questionnaire contained 43 questions on general treatment, diagnostic delays, disease education, psychologic and sexual issues, and specific questions regarding the COVID-19 pandemic. The questionnaires were distributed between January 2021 and September 2023. This study included 103 patients diagnosed with VLS, who were treated at our certified dysplasia unit. Overall, 48% of the patients were satisfied with the success of the therapy. Most participants reported psychologic problems (36.8%), fear of cancer (53.3%), or sexual restrictions (53.3%). Among the patients, 38% were bothered by the regular application of topical cortisone. However, 72% were willing to undergo treatment for more than 24months. The COVID-19 outbreak in March 2020 had a significant negative impact on general VLS care from the patient's perspective (3.83/5 before vs. 3.67/5 after; p = 0.046). There was a general request for booklets to inform and educate the patients about their disease. Furthermore, the respondents demanded a telephone hotline to answer the questions and wished for follow-up visits via e-mail to cope better with their current situation. This study highlights the need for more effective treatments for VLS and an increased awareness of psychologic and sexual distress. To ensure patient well-being and satisfaction, it is imperative to offer individualized care with adequate disease education in a team of specialists from various disciplines.

Interprofessional follow-up of patients with cancer in France (the SINPATIC study): a preliminary, qualitative study of the patient's perspective.

In 2020, 19.2 million people were diagnosed with cancer, and nearly 10 million cancer patients died worldwide. An effective cancer care pathway must be based on coordination, multidisciplinarity, a personalized approach, and collaboration between stakeholders. Follow-up can be improved by good collaboration and communication between GPs and the cancer care team at a common level of organization. To study patients with solid cancers and assess their perceptions of the care pathway, the roles of the healthcare professionals involved, and interprofessional collaboration. In a preliminary, qualitative study (part of the SINPATIC study of general practitioners, oncologists, nurses, and patients), adult patients with cancer in the Paris area of France were interviewed between January and April 2018. Using purposive sampling, 10 patients were recruited from hospital departments and primary care. An interview guide explored 3 themes: the care pathway, the stakeholders' roles in follow-up, and interprofessional collaboration. For patients, dealing with cancer is a complex process of awareness, care provision, decision-making, task assignment, a lack of clarification of professional roles, a piecemeal announcement of the diagnosis of cancer by several stakeholders, organizational and administrative difficulties, non-formal collaboration in inertia (tending towards collaboration under construction), and with cancer follow-up that was usually parallel, sometimes shared, rarely sequential. This SINPATIC substudy provided us a better understanding of the complexity of the patient care pathway. Looking forward, the present findings might stimulate thoughts on the design and development of interventional studies.

Abstract PO2-26-03: Patient decision making and preferences regarding neoadjuvant chemotherapy in Mexican women with early breast cancer

Abstract Background: Neoadjuvant therapy in breast cancer is considered standard treatment for the majority of patients with locally advanced breast cancer. Its use has been extended to early breast cancer aiming to downstage the extent of disease and surgery in the breast and/or axillary lymph nodes, to provide information regarding effectiveness of systemic therapy (which might guide adjuvant treatment recommendations), to provide prognostic information, as well as to extend time for appropriate genetic testing and planning breast reconstruction. However, little is known about patient decision making and preferences in this scenario. We aimed to describe patients’ preferences regarding neoadjuvant chemotherapy (NAC) for early breast cancer, patient decision-making patterns, and satisfaction with their decisions. Methods: Single arm prospective study at the Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán in Mexico City. We included patients aged ≥18 years with recent localized and operable breast cancer diagnosis. Electronic preferences and decision-making questionnaires were completed by each patient before NAC was started. A decision regret scale was completed within the first month after surgery was performed. Demographic and clinico-pathologic characteristics were extracted from the electronic medical records. Results: From March 2020 to April 2023, 29 women were enrolled. Mean age was 49.2 (SD 16.2), 55.5% (n=16) were married or had a partner, 79.3% (n= 23) had at least one child, 58.6% (n=17) had high school or higher education, and 48.2% (n=14) were housewives. 75.8% of women answered that they were proposed to be treated with NAC because of the tumor size, 55.1% due to positive lymph nodes, 72.4% to obtain a conserving surgery and 72.4% to obtain prognostic information. In 75.8% of the cases the oncologist made the decision of NAC and in 96.5% the chemotherapy schedule was explained to patients and their families. 82.7% of women answered that it was important for them to have a breast conserving surgery, 93.1% were worried about adverse events, 79.3% thought that there were possibilities to disappear the tumor with the chemotherapy and 31% thought that if the tumor disappear, they would not require surgery. After surgery was performed 96.1% answered that the decision of NAC was the right one, 7.6% would not make the same choice, and 23% felt that the decision to receive NAC caused them harm. Conclusion: Our study suggests that the reason to make a treatment decision related to NAC for early breast cancer was discussed and explained to the majority of the patients. However, physicians’ opinion was the most powerful to influence decision. A significant proportion of patients desire to have a conserving surgery and were worried about adverse events. Perspectives of patients’ preferences regarding NAC should be considered in treatment decision making to improve their decision satisfaction. Citation Format: Yanin Chavarri-Guerra, Haydee Cristina Verduzco-Aguirre, Roberto Gonzalez-Salazar, Ilana de la Puente Tawil, Paulina Quiroz-Friedman, Alejandro Alfaro-Goldaracena, Sofia Sanchez-Roman, Zuleyma Nieto-Garcia. Patient decision making and preferences regarding neoadjuvant chemotherapy in Mexican women with early breast cancer [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 PO2-26-03.

Abstract PO1-10-06: Understanding clinical meaningfulness in metastatic breast cancer treatment decision-making: experiences and perspectives of patients, caregivers, and clinicians

Abstract Background: While many clinical and non-clinical factors inform metastatic breast cancer (mBC) treatment recommendations; patient preferences, values, and care goals also influence how treatment options are weighed, deliberated, and decided upon. Additionally, in the mBC care setting, clinical meaningfulness and clinically meaningful outcomes (e.g., survival, quality-of-life) are important factors to consider along the care continuum. However, the extent to which patients and their oncology care team align on the interpretation and use of these concepts during treatment decision-making has not been well elucidated. This study examined perspectives on the concepts of (i) clinical meaningfulness and (ii) clinically meaningful outcomes associated with mBC treatment among five key stakeholder groups: patients, caregivers, oncologists, advanced practice providers (APPs), and oncology nurses. Methods: Qualitative semi-structured in-person and web-based focus groups were conducted between March and June 2023 among: (i) people living with mBC; (ii) unpaid or informal caregivers to people with mBC; and providers involved in the care of patients with mBC, including (iii) oncologists, (iv) APPs (i.e., physician assistants and nurse practitioners), and (v) oncology nurses. Discussion guides were developed to elicit stakeholder perspectives on clinical meaningfulness and clinically meaningful outcomes to help identify areas of convergence and divergence between and within stakeholder groups. All discussions were audio recorded and transcribed. The constant comparative approach was used to identify key themes. Results: Twenty-two focus groups were conducted with 50 patients, 24 caregivers, 8 oncologists, 13 APPs, and 17 oncology nurses. Overall, patients and caregivers were unfamiliar with the concepts of clinical meaningfulness and clinically meaningful outcomes, underscoring the critical need for using accessible and patient-friendly terminology in treatment decision-making discussions. While some providers were familiar with these concepts, they reported not using these terms when discussing treatment recommendations with patients. Although some provider participants thought clinical meaningfulness described quantitative endpoints (e.g., additional months of survival), participants across all stakeholder groups described patients’ abilities to achieve life goals (e.g., participation in milestone events and social activities, ability to travel) as paramount. Recommendations for improving treatment decision-making discussions included taking a patient-centered approach, with inclusive, dynamic patient-provider discussions and continuous evaluation of patient priorities across the care continuum, not just at diagnosis. Meaningful outcomes beyond overall survival need to be considered, including quality of life, progression-free survival, minimal or manageable side effects, and improvement in symptom burden and functioning. Across all stakeholders, participants stressed that outcomes considered meaningful are highly individualized and dynamic, evolving over time as patients move through the treatment journey and life stages. Conclusions: Clinical meaningfulness is poorly understood and not often considered in the clinical setting when making mBC treatment decisions, highlighting a need for accessible and patient-friendly terminology in mBC treatment decision-making conversations. While participants valued overall survival, the importance of meaningful outcomes that support patients’ quality of life was emphasized. Study findings can be used to inform both practice and clinical research to better capture meaningful outcomes for patients. Citation Format: Stephanie Graff, Emily Freeman, Meaghan Roach, Rozanne Wilson, Ricki Fairley, Mary Gullatte, Jeanne Stemland, Becky Chan, Paulina Wochal, Julie Katz, Suepattra May-Slater. Understanding clinical meaningfulness in metastatic breast cancer treatment decision-making: experiences and perspectives of patients, caregivers, and clinicians [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 PO1-10-06.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives

BackgroundMotor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.MethodsA UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.ResultsSome participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.ConclusionsThe study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Abstract PS04-09: Patient-Reported Benefit of Resources Designed to Assist with the Financial Toxicity of Breast Cancer

Abstract Background: A breast cancer (BC) diagnosis can cause financial stress, which may worsen disease outcomes and create financial instability. Tailored interventions are urgently needed, but the patient perspective on the utility of financial resource options is limited. Methods: From 6-7/2022, Breastcancer.org community members consented to an online survey in English or Spanish. Eligibility included:US resident, age ³ 18, and BC diagnosis within 10 years. Survey assessed burden of out-of-pocket expenses and perceived benefit of available (1 “Not at all” to 5 “Very much”) and potential (ranked choice) resources. Results: 1,437 participated. Mean age and time since diagnosis was 46 and 2 years, respectively; 75% were in active treatment for non-metastatic (89%) or metastatic (11%) disease. Patients were 60% White, 27% Hispanic, 8% Black, and 4% other race; 94% were women. 47% had either “significant” or “catastrophic” financial burden due to BC, with higher burdens in those with metastatic disease (61% vs 45%, p&amp;lt; 0.001). Direct assistance programs (e.g., reduced cost medications, grants, transportation) were rated the most helpful to respondents (Table). A grant list, a provider question checklist, and access to professional advice were most often ranked as 1st choice for potential resources. There were significant differences by race/ethnicity and disease status. Conclusions: Almost one-half of surveyed patients had significant financial burden due to BC. Patient-centered solutions to lessen financial burdens and optimize patient outcomes should consider direct assistance and patient education to improve knowledge, communication, and self-advocacy. How helpful were/are each of these resources in helping you cope with the financial burdens of BC? Overall Mean Disease Status Race/Ethnicity Non-metastatic Metastatic White Black Hispanic Other Patient assistance programs offered by pharma or medical test companies 2.9 2.9 3.1* 2.9* 2.6 3.1* 2.6 (n=1,107) (n=975) (n=132) (n=618) (n=94) (n=357) (n=38) Nonprofits that provide grants to help cover expenses of people with cancer 2.8 2.8 2.7 2.8 2.6 3.1* 2.4 (n=1,113) (n=991) (n=122) (n=611) (n=100) (n=358) (n=44) Financial assistance department at the cancer center or hospital 2.8 2.8 2.7 2.7* 2.7 3.1* 2.2 (n=1,176) (n=1,046) (n=130) (n=669) (n=103) (n=362) (n=42) Coupons and savings cards to reduce the cost of prescription drugs 2.8 2.8 2.7 2.7 2.5 3.0* 2.5 (n=1,140) (n=1,008) (n=132) (n=648) (n=92) (n=358) (n=42) Programs that provide free or low-cost transportation to medical appointments 2.7 2.8* 2.4 2.6 2.5 3.0* 2.3 (n=1,042) (n=934) (n=108) (n=556) (n=93) (n=356) (n=37) Clinical trials 2.7 2.7* 2.5 2.6* 2.3 3.0* 2.1 (n=1,032) (n=928) (n=104) (n=557) (n=84) (n=357) (n=34) Professional medical billing advocates 2.7 2.7* 2.3 2.5* 2.4 3.0* 2.1 (n=1,105) (n=994) (n=111) (n=612) (n=94) (n=358) (n=41) Social worker or case manager 2.7 2.7 2.6 2.6* 2.3 2.9* 2.4 (n=1,146) (n=1,027) (n=119) (n=644) (n=99) (n=360) (n=43) Nonprofits that provide advice and education about financial issues 2.7 2.7 2.5 2.6* 2.3 3.0* 2.0 (n=1,100) (n=983) (n=117) (n=607) (n=96) (n=359) (n=38) Financial navigator 2.6 2.6 2.5 2.5 2.5 2.9* 2.1 (n=1,087) (n=976) (n=111) (n=598) (n=94) (n=356) (n=39) Which of the following programs and resources would have been (or would be) most useful to you in navigating the financial burdens of BC? Total Non-metastatic Metastatic White Black Hispanic Other (n=1,282) (n=155) (n=686) (n=121) (n=384) (n=64) A list of financial grants people diagnosed with BC can apply for 18% 18% 19% 19%* 24%* 14% 25%* A checklist of questions to ask your healthcare team to help you minimize the financial burdens of BC 15% 16% 12% 16% 17% 15% 9% Access to free or reduced-price professionals to help with medical billing, financial, benefits, and/or legal issues 13% 13% 8% 11% 8% 15%* 20%* * p&amp;lt; 0.001 Citation Format: Fumiko Chino, Sam Meske, Muath Giaddui, Donna-Marie Manasseh, Bridgette Thom, Marisa Weiss. Patient-Reported Benefit of Resources Designed to Assist with the Financial Toxicity of Breast Cancer [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 PS04-09.

Mental health patients' preferences regarding restrictive interventions: An integrative review.

INTRODUCTION: The use of restrictive interventions is a violation of patients' rights that causes physical and psychological harm and which is a well-known challenge globally. Mental health law and legislative principles and experts agree that when restrictive interventions are applied, the least restrictive alternative should be used. However, there is no consensus on what is the least restrictive alternative, especially from the patient perspective. To investigate the literature on mental health patients' preferences regarding restrictive interventions applied during admission to a psychiatric hospital. An integrative review informed by the PRISMA statement and thematic analysis were undertaken. There were tendencies towards patients preferring observation and, for the majority, mechanical restraint was the least preferred restrictive intervention. Factors such as environment, communication and duration were found to influence patients' preferences. There is a lack of agreement on how best to measure patients' preferences and this complicates the choice of the least restrictive alternative. Nonetheless, our findings show that staff should consider environment, communication and duration when applying restrictive interventions. More research on restrictive interventions and the least restrictive alternative is warranted, but agreement is needed on standard measures, and a standard global definition of restrictive interventions.

Abstract PO4-11-12: Patient Reported Outcomes from a multi-site, prospective Pivotal study evaluating pegulicianine fluorescence guided surgery (pFGS) for breast cancer lumpectomy procedures using the Lumicell Direct Visualization System (DVS)

Abstract Background: In pegulicianine fluorescence guided surgery (pFGS), a standard of care lumpectomy procedure is performed, and additional tissue is taken from cavity walls at sites of high pFGS signal. This approach been shown to reduce 2nd surgeries and remove additional tumor left by standard surgery, but may remove more tissue, potentially worsening cosmetic outcomes. Patient breast satisfaction surveys were used to assess cosmesis after pFGS. Methods: A prospective Pivotal trial of pFGS in women undergoing lumpectomy surgery for stage 0-III breast cancer was conducted at 14 US sites (NCT03686215). We assessed the safety and efficacy of the Lumicell DVS in identifying and removing residual cancer from the lumpectomy cavity in real time. Patient Reported Outcome Measures (PROM) data was collected as an exploratory endpoint. The BREAST-Q, a validated tool that measures patient perspectives after different breast procedures, was used to collect PROM data. An 11-question BREAST-Q survey was used to measure patients’ breast satisfaction at baseline (pre-surgery) and at multiple timepoints through 6-months post lumpectomy. Descriptive statistics of participating patients’ responses were collected and analyzed. Survey results were analyzed by the distribution of patient ratings for each question and the change in the distribution of ratings over time, with comparison of baseline to post-lumpectomy. Comparison of patient satisfaction with or without additional pFGS-directed tissue removal was performed with Item Response Theory assuming all items equally discriminative of responding patients. For each timeframe, responses to BREAST-Q items were used to create a response score for each patient. Scaled factor scores (0-100) were compared between groups with and without additional tissue removed during pFGS. Results: Of the 357 patients evaluated for efficacy in the primary Pivotal study analysis, 255 patients agreed to participate in the PROM surveys (71%). Approximately 60% of the participating respondents completed a pre- and initial post-lumpectomy survey while only 34% of the participating patients completed a pre- and 6-month post-lumpectomy survey. Most patients responded either “Very Satisfied” or “Somewhat Satisfied” across all surveyed timeframes. No significant difference in patient breast satisfaction was found at any time point between the groups with and without additional pFGS-guided shaves removed (p &amp;gt;0.05). There were 4 patients with scores of 3 or higher pre-surgery but 2 or lower post-surgery. Among these, 1 had no pFGS-guided shaves taken. The remaining 3 had had pFGS-guided shaves taken, but 2 required a second lumpectomy surgery and 1 underwent mastectomy, these additional surgeries likely accounting for decreased cosmetic outcomes. Discussion: Patient perspective of breast satisfaction was not decreased by the amount of extra tissue removed by pFGS. These data suggest that pFGS using the Lumicell DVS does not significantly decrease breast cosmesis. Three of 4 patients with decreased satisfaction had 2nd surgeries, confirming the importance of finding approaches to decrease 2nd surgeries. This data was collected during the COVID-19 pandemic, which may have adversely impacted the compliance rate of survey completion. Studies in larger cohorts with longer follow up are required to better assess the relative impact of 2nd surgeries, radiation, and systemic therapy on breast satisfaction PROM scores after lumpectomy. Citation Format: Kelly Hunt, Irene Wapnir, E Shelley Hwang, David Carr, Peter Blumencranz, Kate Smith, Manna Chang, Jorge Ferrer, Barbara Smith. Patient Reported Outcomes from a multi-site, prospective Pivotal study evaluating pegulicianine fluorescence guided surgery (pFGS) for breast cancer lumpectomy procedures using the Lumicell Direct Visualization System (DVS) [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 PO4-11-12.

Perspectives from the Inaugural "Spinal CSF Leak: Bridging the Gap" Conference: A Convergence of Clinical and Patient Expertise.

The inaugural "Spinal CSF Leak: Bridging the Gap" Conference was organized to address the complexities of diagnosing and treating spinal CSF leaks. This event aimed to converge the perspectives of clinicians, researchers, and patients with a patient-centered focus to explore the intricacies of spinal CSF leaks across 3 main domains: diagnosis, treatment, and aftercare. Physician and patient speakers were invited to discuss the varied clinical presentations and diagnostic challenges of spinal CSF leaks, which often lead to misdiagnosis or delayed treatment. Patient narratives were interwoven with discussions on advanced radiologic techniques and clinical assessments. Treatment-focused sessions highlighted patient experiences with various therapeutic options, including epidural blood patches, surgical interventions, and percutaneous and endovascular therapies. The intricacies of immediate and long-term postprocedural management were explored. Key outcomes from the conference included the recognition of the need for increased access to specialized CSF leak care for patients and heightened awareness among health care providers, especially for atypical symptoms and presentations. Discussions underscored the variability in individual treatment responses and the necessity for personalized diagnostic and treatment algorithms. Postprocedural challenges such as managing incomplete symptom relief and rebound intracranial hypertension were also addressed, emphasizing the need for effective patient monitoring and follow-up care infrastructures. The conference highlighted the need for adaptable diagnostic protocols, collaborative multidisciplinary care, and enhanced patient support. These elements are vital for improving the recognition, diagnosis, and management of spinal CSF leaks, thereby optimizing patient outcomes and quality of life. The event established a foundation for future advancements in spinal CSF leak management, advocating for a patient-centered model that harmonizes procedural expertise with an in-depth understanding of patient experiences.

Potential causes of delays in paediatric perforated appendicitis: A prospective interview study.

Delays in care may be a driver of inequities in perforated appendicitis rates. The goal of this study was to explore potential causes of delay in care for children with perforated appendicitis. We conducted an interview study of caregivers of children admitted with perforated appendicitis to a children's hospital between December 2022 and March 2023. Semi-structured interviews based on an iteratively revised interview guide were conducted in-person during the child's admission. All interviews were transcribed, coded and underwent a process of thematic analysis. We reached thematic saturation after 12 interviews. The median age for children was 13.5 years, 50% were male, 83% of caregivers self-identified as White, and one interview required an interpreter. Through thematic analysis, four major themes for potential causes of delay emerged. The first theme of symptom recognition includes delays related to recognising the symptoms, their severity and the need for medical evaluation. The second theme - accessing care - describes delays that occur after a decision was made to seek care until the child was evaluated. The third theme includes delays that occur in making the diagnosis after evaluation. The last theme captures potential delays in definitive treatment after a diagnosis of appendicitis is made. We identify four major themes from the patient and family perspective, each with multiple sub-themes, for potential delays in definitive care for children with perforated appendicitis. Additional research is needed to further characterise these potential delays and quantify their role in contributing to inequities in perforation rates.

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.

Abstract PO1-11-04: Breast cancer patient perspectives on the need for psychotherapy and the roll of physician referrals for improved quality of life during and post treatment

Abstract Objective: The purpose of this mixed methods study was to examine what factors may influence emotional suppression and emotional expression in breast cancer patients and how coping styles relate to beliefs about physician-driven referrals to therapy during the cancer treatment process to improve quality of life during and after breast cancer treatment. Methods: A mixed method research design consisting of quantitative methods including a demographics survey, the Courtauld Emotional Control Scale and treatment preference questionnaires followed by optional participation in a semi-structured interview. Sixty-nine participants who met the inclusion criteria were selected as the quantitative study sample and 27 participated in interviews to further discuss their personal views on therapy during breast cancer treatment, beliefs about physician-driven referrals and experiences of coping throughout and post-cancer treatment. Results: Demographic variables including age, marital status, income, and experience of psychotherapy prior to breast cancer diagnosis are statically significant factors that influence CECS scores and coping styles. Thematic narrative analysis of interviews revealed both Expressers and Suppressors recounted experiencing the ‘Elsa effect’, a term coined to describe emotional concealment as a form of emotionally protecting self and others and reported that a physician driven referral to therapy would have been helpful in terms with coping and improving quality of life. Participants universally believed that there should be some level of psychotherapy referrals for supportive mental health care during and after the treatment process. Types of supports to which they wanted to be referred, how referrals are made, why referrals are needed, language used when making referrals, what medium through which therapeutic support should be offered, and whether or not therapy referrals should be mandated were all discussed. Physician stigma related to psychotherapy was also suggested as a possible barrier. Conclusions: Overwhelmingly, participants who fell into either category of emotional suppressor or emotional expresser believed that there should be physician driven referrals to therapy during the breast cancer treatment process as part of best practices for improved quality of life. Both those identified as suppressors and expressers indicated high rates of concealing one’s true emotional experience. This highlights the need for psychological therapy referrals to be integrated as a best practice, regardless of patient’s identified coping style or demographic identities. Referral sources should be mindful of language used, patient ability to access to services and other factors as part of the referral process. Citation Format: Joyce Williams, Beth Counselman-Carpenter, William Burak. Breast cancer patient perspectives on the need for psychotherapy and the roll of physician referrals for improved quality of life during and post treatment [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 PO1-11-04.

New horizons in undergraduate geriatric medicine education.

Current projections show that between 2000 and 2050, increasing proportions of older individuals will be cared for by a smaller number of healthcare workers, which will exacerbate the existing challenges faced by those who support this patient demographic. This review of a collection of Age and Ageing papers on the topic in the past 10years explores (1) what best practice geriatrics education is and (2) how careers in geriatrics could be made more appealing to improve recruitment and retention. Based on these deeper understandings, we consider, as clinician educators, how to close the gap both pragmatically and theoretically. We point out paradigm shifting solutions that include innovations at the Undergraduate level, use of simulation, incorporation of learner and patient perspectives, upskilling professionals outside of Geriatrics and integration of practice across disciplines through Interprofessional Learning. We also identify an education research methodological gap. Specifically, there is an abundance of simple descriptive or justification studies but few clarification education studies; the latter are essential to develop fresh insights into how Undergraduate students can learn more effectively to meet the needs of the global ageing challenge. A case of improving understanding in delirium education is presented as an illustrative example of a new approach to exploring at greater depth education and outlines suggested directions for the future.

Author namesCancer patients’ perceptions of nursing: Expectations & realities, a phenomenological study

PurposeDetermining the perception and expectations of cancer patients will inform nurses’ understanding of how to conduct nursing care to meet patients' needs. Studies have mainly used quantitative methods to understand nursing image from the perspective of the public and the profession, and there are no recent studies to date on nursing image from the perspective of cancer patients. The aim of this qualitative study was to explore cancer patients’ experiences and perceptions of nursing within the conceptual framework of Watson's Human Care Theory. MethodsIn total, 19 phenomenological semi-structured interviews were conducted with cancer patients between November 2022 and January 2023. Data were analyzed using Assarroudi et al.'s content analysis. ResultsThree themes emerged from the phenomenological analysis of the interviews: (1) nursing image, (2) expectations, and (3) realities. Patients stated that nurses act as assistants and that health services cannot be provided without them. Under the main theme of ‘expectations,’ five subthemes emerged: psychosocial care, physical care, ethics, individual characteristics, and no expectations with the theme of ‘realities’ contained two subthemes: (1) satisfaction with nurse behaviors, and (2) dissatisfaction with nurse behaviors. ConclusionsOur study provides important insight for nurses working with cancer patients in the management of patient care and treatment. Empowering cancer nurses will increase patient care satisfaction. We recommend the implementation of programs designed to support nurses and improve nursing communication skills. We also recommend that the technical and psychosocial aspects of nursing care should be considered as a whole.