Care Delivery Research Articles

Optimizing Care Across the Continuum for Older Adults with Lung Cancer: A Review

Older adults with lung cancer experience inferior clinical outcomes compared to their younger counterparts. This review provides the scaffolding to address these disparities by delineating (1) the distinct and varied care needs of older adults with lung malignancies, (2) evidence-based measures for identifying subgroups within this population meriting tailored approaches to care, (3) age-specific considerations for the selection of cancer-directed therapy, and (4) opportunities for future work to enhance clinical outcomes and care delivery.

Abstract 4138246: Differences in Major Adverse Cardiovascular and Lower Limb Events and Guideline-Directed Medical Therapy Among Males and Females Within an Integrated Healthcare System

Background: Health disparities based on gender have been recognized as having a detrimental impact on care delivery and early identification of disease processes. Peripheral arterial disease (PAD) is the third leading cause of atherosclerotic disease mortality. It is unclear what role, if any, gender plays in the diagnosis, treatment, and outcomes of PAD. Hypotheses: Females are less likely to have guideline-directed medical therapy (GDMT) and more likely to have major adverse cardiovascular events (MACE) and major adverse lower limb events (MALE) than males. Methods: The Intermountain Health electronic database was queried for patients meeting the following criteria: ≥18-years of age, PAD diagnosis between Jan 2006 to Dec 2021, seen at least once within the 18-months following initial PAD diagnosis, and had a symptom of PAD (see table). Follow-up GDMT, based on the 2016 AHA/ACC PAD guidelines, was determined by medication and procedures. Time to outcomes of MACE (all-cause death, MI, stroke, or unstable angina hospitalization) and MALE (limb ischemia, limb revascularization, or limb amputation) were examined using Cox-proportional hazard adjusted for GDMT, age, and prior CAD. Results: A total of 7522 patients had a symptomatic PAD diagnosis, with 38% female and 62% male. Females tended to be older (70.1±13.0 vs 68.6±11.7), more likely to be obese (25% v 21%), and less likely to have Afib (21% v. 24%), CAD (30% v 41%), MI (11% v 16%), renal failure (19% v 22%) but more likely to have a bleeding history (30% v 26%) (all p<0.01). Females were slightly less likely to have all the GDMT and yet had similar rates of referrals to specialists but higher rates to primary care providers (Table). After adjustment, females were less likely to have MACE (HR=0.94; 95% CI: 0.88, 0.99) and MALE (HR=0.85; 95% CI: 0.80, 0.92). Conclusion: Females had lower rates of MALE, driven by lower limb revascularization or amputation rates, and slightly lower rates, after adjustment, for MACE. This was observed despite the high rates of GDMT for both females and males (~80% in any category), with females having slightly less GDMT.

Developing a Statewide Strategic Plan for Prevention, Early Identification, and Treatment of Psychosis.

Access to evidence-based programs that address early psychosis is a substantial public health concern. The authors describe the community-engaged, data-driven process that informed the development of the Massachusetts Strategic Plan for Early Psychosis, an effort to identify actionable priorities to build a system of prevention and care that responds to the needs of individuals who experience psychosis and their caregivers. A multiphase, mixed-methods approach was used to gather knowledge from young adults experiencing early psychosis and their caregivers, including two symposia with diverse stakeholders. Six overarching goals were identified, each with possible action steps and stigma reduction strategies: connecting and supporting individuals who experience psychosis and their families, promoting early identification of and intervention for psychosis through community education, providing specialized support to key community members, providing specialized support to medical and behavioral health care professionals, supporting specialized treatment teams in the delivery of evidence-based care, and developing a statewide system of psychosis services. Next steps for and operationalization of the statewide strategic plan for psychosis in Massachusetts will require a population health approach that engages the community through intersectoral and multisectoral strategies.

Barriers to and Facilitators of Effective Behavioral Health Crisis Care Services.

Expanded funding to support care across the crisis continuum is intended to improve behavioral health outcomes. A greater understanding of how to effectively implement and integrate local crisis care systems has been identified as a research and policy priority. The aim of this study was to explore provider perceptions of the barriers and facilitators associated with implementing effective behavioral health crisis services. The authors conducted semistructured qualitative interviews with personnel from 15 behavioral health crisis care programs across California. Purposive sampling was used to ensure adequate representation of peer specialists, clinicians, mental health workers, and program leaders. Interview transcripts were analyzed via an inductive approach to thematic analysis. On the basis of patterns identified in the data, initial codes were developed, reviewed, and combined into overarching preliminary themes and subthemes. Twenty-nine crisis care personnel participated. Facilitators of effective crisis care included an optimal crisis service structure, a client-centered approach, engagement with clients' support systems, and collaboration with community partners to link clients to services and enable safe delivery of crisis care. Barriers at the client, program, and system levels were identified, with solutions proposed for each. The participants identified features of crisis care that could improve program implementation and effectiveness or could help mitigate identified barriers. As states and local municipalities work to implement an integrated system of care across the crisis care continuum, input from frontline providers can be used to support the development of new programs, refine existing services, and inform future directions for research.

A Mobile Craniofacial Surgery Unit: Reconstructing Casualties of War in Ukraine.

This paper describes the development and implementation of a mobile craniofacial surgical unit designed to address complex posttraumatic craniofacial deformities in both civilian and military casualties resulting from Russia's invasion of Ukraine. Restricted air space, limited possibilities for transportation of personnel and equipment, frequent interruption of power and water supply, and constant threat of injury to patients and medical personnel from missile and drone strikes, precludes reliable and safe delivery of tertiary care. The Canada Ukraine Surgical Aid Program (CUSAP) addressed these challenges by establishing a mobile craniofacial surgery unit, operating just outside of the war zone. The following report characterizes the civilian and military casualties, highlights the barriers to the provision of adequate tertiary care locally, and provides a detailed description of the measures that were taken to organize the mobile unit. The effectiveness of this program is documented, and specific challenges are illustrated through case examples. We believe this model serves as a template for delivering surgical aid to victims of any global disaster where care cannot be provided locally.

Survivor Health Connection Project: Understanding Experiences of Accessing Health Care Among Those Affected by Intimate Partner Violence During the COVID-19 Pandemic.

Intimate partner violence (IPV) has short- and long-term health effects, including physical injuries and traumatic brain injury, as well as sexual, reproductive, and mental health issues. However, accessing necessary health care is often challenging for IPV survivors and became even more difficult during the COVID-19 pandemic. We examined access to health care among those affected by IPV during the COVID-19 pandemic to better connect survivors to health and social support services. The Health Resources and Services Administration's Office of Women's Health partnered with its Bureau of Primary Health Care, the Administration for Children and Families' Office of Family Violence Prevention and Services, and the National Domestic Violence Hotline (Hotline) on the 2-year Survivor Health Connection Project. The Hotline administered 2 surveys to its contacts: a 2-question postinteraction survey from March 29, 2021, through September 30, 2022, and a longer focused survey in 2021 and 2022 that measured barriers and restrictions to accessing health care, telehealth safety, and interactions with health care providers. Of 9918 respondents to the postinteraction survey, 6173 (62.2%) reported current health needs related to their abusive experience. Nearly half of 242 respondents to the 2021 survey (n = 106, 43.8%) indicated that the frequency or intensity of abuse increased during the COVID-19 pandemic, and 157 of 338 respondents to the 2022 survey (46.4%) reported that their partner had controlled and/or restricted their access to health care. Participants described barriers to accessing health care, including finances, health insurance coverage, and transportation. Findings illuminate opportunities to further support the health and social needs of those experiencing IPV, including continued coordination of efforts across health care and social service delivery partners.

Residential medication management reviews: a call for improved collaboration and systems integration in aged care

Purpose Residential Medication Management Reviews (RMMR) are a key component of safe, high-quality aged care service delivery. The RMMR is an interdisciplinary approach to medication management that relies on collaboration, communication and integration of systems. Acting as an improvement opportunity, the purpose of this paper is to present findings from a regional study, aimed at assessing the impact of RMMR on falls and hospital admissions and identifies barriers to impactful research in this area. Design/methodology/approach A three-year retrospective quantitative longitudinal practice audit was conducted in a regional state-managed high-care residential facility in Queensland, Australia. Data was collected pre-RMMR and six months post-RMMR. Findings The data collected was insufficient to achieve statistical significance or demonstrate the impact of RMMR on health outcomes. Factors impeding the research included limited ability to collect the data due to the lack of integration of information systems and limited stakeholder engagement resulting in poor recruitment. This highlights the need for improvement in RMMR processes and practices, and indeed wider research collaboration in the aged care sector. Research limitations/implications Thís paper acts as a call to action to improve research and interprofessional collaboration in Australian aged care. Originality/value The aged care industry needs high-quality research to drive practice improvement and collaborative care and service delivery. This paper advocates for improvements in the aged care sector with respect to research engagement and communication pathways between service providers. Advancement in systems integration for information sharing, recruitment of participants and stakeholder engagement will support evidence-based practice and process change.

Abstract 4115816: Enhancing Cardiogenic Shock Management: Insights from MCS utilization and Patient Outcomes

Cardiogenic shock (CS) remains a challenge with high mortality rates despite advances in treatment modalities. This study investigates the utilization and impact of mechanical circulatory support (MCS) devices, including intra-aortic balloon pump (IABP), Impella, and Extracorporeal Membrane Oxygenation (ECMO) on patient outcomes in CS management. A retrospective analysis was performed using National Inpatient Sample data (2017 to 2019). Inclusion criteria included patients aged ≥18 years with primary diagnosis of CS using ICD10(R570). Multivariate regression analysis was used to assess MCS duration, mortality, length of stay (LOS), and costs. Among 462,685 included patients, 38% were female, with a mean age of 66 years. Majority were White (67%), followed by Black (16.5%), and Hispanic (9%). IABP was utilized in 13% of cases, Impella in 6%, and ECMO in 0.9%. No significant difference was observed in MCS placement between weekdays vs weekends. However, weekend admissions showed higher mortality rates with an odd ratio (OR) of 1.06(p <0.00, CI 1.03-1.09), particularly among females OR 1.25(p<0.00, CI 1.22 – 1.289). Urban non-teaching hospitals exhibited highest mortality rate, followed by Urban teaching. ECMO was associated with highest mortality OR 2.08(p < 0.00, CI 1.93-2.82), followed by Impella OR of 1.47 (p < 0.00, CI 1.37 – 1.59), and IABP OR 0.723 (p < 0.00, 0.685-0.765). LOS was lowest in Impella group, followed by IABP, while ECMO showed non-significant LOS increase. Mean total charge varied among MCS groups with ECMO being highest. The findings highlight several important aspects of CS management. Elevated mortality rates during weekend admissions suggest potential disparities in care access or delivery, necessitating investigation and interventions to ensure consistent quality of care throughout the week. Increased mortality among females, variations across different hospital settings, impact of MCS devices on LOS and costs emphasize the need for tailored approaches to enhance patient outcomes and resource utilization efficiency.

Abstract 4133161: Variation in Prevalence, Treatment, and Outcomes in Heart Failure with Improved Ejection Fraction by Race and Ethnicity

Background: Racial and ethnic disparities exist in heart failure with reduced ejection fraction (HFrEF), but little is known about how race and ethnicity relate to patients with HF with improved EF (HFimpEF). Research Question: Do the epidemiology, treatment, and outcomes vary by race and ethnicity in patients with HFimpEF? Aim: To describe the relationship between race and ethnicity and HFimpEF within a large, integrated health care delivery system. Methods: We identified adults aged ≥18 years with incident HFrEF (LVEF≤40%) from 2013-2018 within Kaiser Permanente Northern California. HFimpEF was defined as LVEF>40% within 12 months after incident HFrEF. Self-reported race and ethnicity were classified as non-Hispanic White, non-Hispanic Black, Asian American/Native Hawaiian/Pacific Islander (AANHPI), Hispanic, and other. Incidence rates of worsening HF (WHF) events (i.e., HF hospitalization, ED visit, or urgent outpatient WHF visits) or all-cause death were compared across patients with HFimpEF and persistent HFrEF using Cox proportional hazard models adjusted for age, sex, and LVEF at incident HFrEF, stratified by race and ethnicity. Results: Among 12,639 adults with incident HFrEF, 7,562 (59.8%) were White, 1,481 (11.7%) were AANHPI, 1,385 (11.0%) were Black, and 1,537 (12.2%) identified as Hispanic. Rates of HFimpEF following incident HFrEF was lowest among Black patients (26%), but similar among other race and ethnicities (36%, 34%, 30%, and 30% for AANHPI, White, Hispanic, and other, respectively, chi-squared p<0.01). Medication use was similar across groups at time of HFimpEF, but generally declined thereafter (Panel A) . Among patients with HFimpEF, Black and Hispanic patients had significantly higher crude rates of WHF or death compared to White patients (34 and 30 compared to 23 per 100 person-years, p<0.01 for each). Despite these differences in absolute rates, relative associations between HFimpEF (vs. persistent HFrEF) and WHF or death remained similar across all race and ethnicities (AANHPI: aHR=0.52 [95%CI 0.42-0.65], Black: aHR=0.70 [95%CI 0.56-0.87], Hispanic: aHR=0.60 [95%CI 0.49-0.73], White: aHR=0.53 [95%CI 0.48-0.58], p interaction =0.13) (Panel B) . Conclusions: HFimpEF is common within 12 months after incident HFrEF, and HF medication adherence declines in the years following. HFimpEF is associated with improved clinical outcomes across race and ethnicity, but occurs less frequently in Black patients despite similar HF medical therapy use.

Shaping Patient Loyalty through Quality Care: Analyzing Patient Satisfaction in Public Hospitals in Ghana

Public hospitals in Ghana face challenges such as limited resources and inconsistent care delivery, which impact patient satisfaction and loyalty. In this context, enhancing service quality is crucial for retaining patients and improving healthcare outcomes. This study investigates the role of service quality in shaping patient loyalty and explores patient satisfaction as a mediator in selected public hospitals in Ghana using the SERVQUAL model. A survey was conducted among 200 outpatients from five public health facilities in Kumasi, Ghana, between January and February 25, 2024. A quantitative methodology was applied to evaluate how patients' perceptions of service quality influence their loyalty toward public healthcare providers. In order to analyze the data, SPSS and the smart partial least square (PLS) software version 3.0 were used for structural equation modeling (SEM). The findings revealed that communication, the physical environment, and responsiveness significantly affect patient loyalty, whereas factors such as privacy, safety, and a customer-friendly atmosphere do not. Additionally, this study confirmed that patient satisfaction mediates the relationship between service quality and patient loyalty, underscoring the importance of service quality in enhancing both satisfaction and loyalty in health care. Based on these insights, this study recommends that health care institutions improve their service quality to strengthen public healthcare systems. The significance of this paper extends beyond regression analysis, as it also addresses the delayed effects of service quality on patient loyalty, considering both direct and indirect influences in the regression models.

Delivery of Supported Self-Management in Primary Care Asthma Reviews: Insights From the IMP2ART Programme.

Supported self-management (SSM) for asthma reduces the risk of asthma attacks and improves asthma control and quality of life. SSM optimally includes patient-centred communication and behaviour change support, however, the extent to which this occurs in routine primary care is unclear. This project was nested within the IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) programme; a UK-wide trial evaluating an implementation strategy (including healthcare professional (HCP) training on behaviour change strategies and patient-centred care) to improve support for asthma self-management. To provide an understanding of how healthcare professionals deliver SSM in UK clinical practice; through assessing time spent on SSM strategies, how and to what extent patient-centred care and behaviour change discussions are delivered, and to explore whether factors such as mode of review or implementation support influence delivery. We conducted an observational study using video-recordings of 12 HCPs delivering routine face-to-face and telephone asthma reviews (n = 64) in a sample of general practices participating in the IMP2ART trial (implementation n = 4; control n = 6). Analytical methods included: ALFA Toolkit Multi-Channel Video Observation (to code and quantify tasks undertaken); the Patient-Centred Observation Form; and The Behaviour Change Counselling Index (to assess patient-centeredness and behaviour change counselling used by HCPs). HCPs mostly spent time during routine asthma reviews discussing: an individual's asthma condition and management (average of 27.8% of consultation time); collaboratively reviewing and completing a personalised asthma action plan (6.3%) and training for practical self-management activities (5.4%). Areas of patient-centred care delivery and behavioural discussions included: creating and maintaining relationships, discussing asthma action plans and medication reconciliation. Professionals in IMP2ART implementation group practices delivered more SSM strategies. Comparison of face-to-face and remote consultations found no significant differences in HCP delivery of SSM. HCPs in UK primary care spent half the time in both face-to-face and remote asthma reviews delivering components of SSM suggesting that either mode of delivery may be acceptable. Reviews carried out in IMP2ART implementation group practices demonstrated more behaviour change and collaborative SSM strategies compared to those in the control group. Asthma UK Centre for Applied Research (AUKCAR) PPI members were involved throughout, including project conception, providing feedback on participant-facing documents, and discussing implications of study findings.

Developing a Family Medicine Program in Jordan: appraisal of trainees and trainers and final assessment outcomes

Introduction Curriculum development in medical education, particularly in family medicine, is essential for preparing healthcare professionals to meet evolving patient needs. This article examines the development of a Family Medicine program in Jordan, focusing on challenges, methodologies, and outcomes. Methods The curriculum was developed through collaboration between Jordanian and European universities, emphasizing core family medicine principles, evidence-based practice, and local context. Two cohorts of trainees participated in the one-year program, which used a 'whole task learning model' covering communication, clinical knowledge, and community health. Feedback was gathered through focus group interviews with trainers and trainees, and pre- and post-test data were analyzed to assess effectiveness. Results Feedback indicated positive perceptions among trainers and trainees. Trainees valued the transition to Arabic-led lectures, improved primary care understanding, and trainer engagement. Strengths included evidence-based guidelines and patient interaction emphasis. Areas for improvement included more face-to-face training and practical opportunities. Trainers suggested enhancing practical skills training and increasing Arabic materials. Despite pretest score variations, both cohorts showed significant improvement. Challenges such as non-participation and cheating highlighted the need for regular attendance and academic integrity. Conclusion The research underscores the importance of feedback from trainees and trainers in curriculum development. Continuous improvement, comprehensive assessment, and prioritizing linguistic and cultural relevance are crucial for enhancing primary care delivery in Jordan.

Innovating Diabetes Care in Pregnancy: Do group care models improve outcomes and equity?

Shared medical appointments (SMAs) for diabetes and group prenatal care (GPC) for pregnant patients, have emerged as innovative care delivery models. They have the potential to transform diabetes care by overcoming many of the time limitations of traditional one-on-one clinical visits. There is compelling evidence that SMAs improve glycemic control for non-pregnant patients with diabetes, GPC reduces Black/White health disparities in preterm birth, and Diabetes Group Prenatal Care increase postpartum glucose tolerance test uptake among patients with gestational diabetes mellitus. GPC models standout as one of few interventions that reduce racial health disparities, which we hypothesize occurs because they inadvertently exert their effect on both the patient and clinician through a 20+ hour meaningful shared experience. This Perspective explores the evidence for SMA and GPC in diabetes and pregnancy, theoretical underpinnings of the models, their potential to promote more equitable care, and future directions from my Perspective, as a high-risk obstetrician and 2019 ADA Pathway Accelerator award recipient.

Sociodemographic and Health-Related Risk Factors Associated With Planned and Emergency Cesarean Births in Mexico.

Cesarean delivery is a contributing factor to many delivery care and postpartum maternal morbidities, especially when a cesarean delivery is unnecessary. Mexico has one of the highest cesarean birth rates in Latin America, and as such, our objective was to identify the sociodemographic, reproductive, maternal care, and health-related characteristics associated with the prevalence of planned and emergency cesarean births in Mexico. Using nationally representative data from a Mexican probabilistic survey (ENSANUT 2021), we examined and developed a cross-sectional analysis of women aged 12 to 19 with a live-birth and women 20 to 49 years who had their last live-birth within five years before the survey (n = 1330). We used multinomial logistic regression analysis to examine predictors associated with planned and emergency cesarean births. The live-births within our sample included 50.7% vaginal, 27.5% emergency cesarean births, and 21.8% planned cesarean births. Younger age groups at delivery, speaking an indigenous language, and receiving delivery care at open public services are negatively associated with having any cesarean birth. Receiving delivery care at private institutions and having hypertension during pregnancy increases the odds of having both planned and emergency cesarean births. Emergency cesarean births are positively associated with tertiary education and negatively correlated with the parity of three or more children, while planned cesarean births are more likely for women with a parity of two. Efforts to reduce unnecessary cesarean births should include evidence-based medicine recommendations, actions to avoid the first cesarean birth, and providing pregnant women with counseling to support informed decisions.

Interprofessional collaboration between hospital-based palliative care teams and general healthcare workers: A realist review protocol.

Palliative care, vital for patients with advanced, life-limiting or life-threatening illnesses, faces an increasing global demand due to aging populations and rising non-communicable diseases. Specialized palliative care teams (PCTs) within hospitals significantly impact patient outcomes, which requires effective interprofessional collaboration with general healthcare workers. Therefore, We will conduct a realist review to explore the contextual factors, mechanisms and outcomes related to the interprofessional collaboration between PCTs and general healthcare workers. Grounded in the third generation Cultural-Historical Activity Theory, this review will follow 5-step iterative process. First, a preliminary literature search will define the review scope. Second, based on the preliminary searches an initial program theory will be developed. Third, systematic searches across PubMed, Embase, CINHAL, Web of Science, and Scopus will be caried out. Fourth, data extraction of included studies will be conducted. Simultaneously, relevance and rigour of individual studies will be evaluated. Lastly, data analysis and synthesis will be conducted in which identified individual Context-Mechanism-Outcome (CMO) configurations will be combined in chains of inference through which hypotheses can be formulated. In summary, this realist review will refine an initially developed program theory, producing a framework elucidating how interprofessional collaboration works between PCTs and general healthcare workers. This review aims to provide crucial insights into interprofessional collaboration between PCTs and general healthcare workers, informing optimized palliative care delivery in acute care hospitals for diverse stakeholders.

The Relationship Between Leadership Characteristics and Services Provided Among IHS Urban Indian Health Programs.

The Urban Indian Health Program was created by the Indian Health Service to establish a culturally appropriate health care delivery model for Native Americans who relocate to urban areas. The 31 community-based Indian Health Programs under the Office of Urban Indian Health Program vary in culture, socioeconomic, and patient mix. Strategic decision-making by these community-based Indian Health Programs depends upon various factors, including leaders' characteristics, organizational characteristics, and service area market factors.

The Role of Nursing in Managing Chronic Illness: A Review of Patient Outcomes and Quality of Life

The management of chronic illness is a growing priority in healthcare, with nursing playing a critical role in improving patient outcomes and quality of life. This review explores the various nursing interventions that support chronic illness management, including patient education, symptom monitoring, and emotional support. By providing personalized care and fostering self-management skills, nurses contribute to reduced hospital readmissions, improved medication adherence, and enhanced physical and mental health outcomes. Additionally, nursing care significantly influences patients' quality of life, offering emotional support that positively impacts their mental well-being and overall satisfaction. Despite the benefits, challenges such as limited resources, time constraints, and nursing burnout remain barriers to effective care. This review emphasizes the need for continued support for nursing roles in chronic illness management, policy adjustments to address resource limitations, and integration of technology to enhance care delivery. Overall, a strengthened nursing role in chronic illness management not only benefits patient outcomes but also enhances patients' quality of life, underscoring the importance of investment in nursing care to meet the demands of chronic illness in healthcare.

DISP-13. TELEHEALTH UTILIZATION IN NEURO-ONCOLOGY: EXPERIENCE AFTER THE COVID-19 PANDEMIC

Abstract BACKGROUND Central nervous system (CNS) tumors are frequently characterized by physical disabilities, and treatment is often associated with side effects, as well as financial toxicity and loss of income owing to disease-related neurological deficits. Treatment at centers with specialized neuro-oncology care is associated with an overall survival benefit. However, access to such centers can be limited for many patients. Telehealth services represent an option for improving access to specialized care. During the COVID-19 pandemic public health emergency (PHE), regulatory and reimbursement changes provided patients improved access to neuro-oncology by telehealth. METHODS We retrospectively analyzed our institutional utilization of telehealth visits in the neuro-oncology vs solid tumor oncology practice after the COVID-19 pandemic. RESULTS Between July 2020 and April 2021, telehealth represented 24.1% of all neuro-oncology visits compared to 13.3% for all solid tumor groups. Between May 2021 and April 2023, telehealth visits remained frequent in neuro-oncology compared to solid tumor groups (34.6% vs 15.2%). Utilization rates declined across the practice in the year following expiration of the COVID-19 PHE in May 2023, though remained high for neuro-oncology at 34.1% vs 15.2% for solid tumor groups. Overall, telehealth visit utilization for neuro-oncology has remained more than double that of the oncology practice as a whole. CONCLUSIONS The striking difference between telehealth visit utilization in neuro-oncology compared with general medical oncology indicates that patients with CNS tumors, and those that provide care for these patients, have come to depend on this mode of care delivery. Even after expiration of the COVID-19 PHE, telehealth use remains high in neuro-oncology at our institution. Prospective evaluation to determine the safety of and clinical outcomes associated with telehealth visits for individuals with CNS tumors are critically needed. Such data may promote regulatory and reimbursement reform enabling broader adoption, service sustainability, and improved access to specialized care.

QOL-20. NATIONAL BRAIN TUMOR SOCIETY BRAIN TUMOR QUALITY OF LIFE RESEARCH AGENDA

Abstract BACKGROUND QoL is a critical aspect of health care outcomes, particularly in the context of brain tumor treatment and survivorship. There are evidence gaps in optimal strategies for improving QoL among brain tumor patients and care partners. Understanding the multifaceted dimensions of QoL and identifying key areas for brain tumor QoL research can significantly enhance patient care and support. Engaging the brain tumor community in defining QoL outcomes and determining research priorities can help orient research resources to community needs and perspectives. OBJECTIVE To summarize the process and outcomes of an NBTS-led collaborative effort to co-design a comprehensive research agenda on QoL for brain tumor patients and care partners, as outlined in the “Brain Tumor QoL Research Agenda.” METHODS The agenda was developed through a collaborative effort involving experts in neuro-oncology, patients, care partners, patient advocacy groups, and healthcare professionals over a two-year period. A review of existing literature, patient experiences, and expert opinions informed the identification of key research priorities. A multistakeholder advisory group held monthly meetings where brain tumor QoL was defined. In 2023, we conducted two “Research Roundtables” for adults and pediatric/AYA. The World Cafe method captured data and a survey consensus process to validate findings. RESULTS The QoL research agenda delineates a multifaceted framework encompassing domains crucial for understanding and improving QoL in brain tumor patients. Key focus areas include symptom management, psychosocial support, care burden, treatment decision-making, survivorship issues, and health care delivery models. An RFP was released by NBTS with input from stakeholder advisors in April 2024. CONCLUSION The Brain Tumor QoL Research Agenda created a roadmap for advancing research efforts aimed at enhancing the QoL of individuals affected by brain tumors. By addressing the identified research priorities, healthcare stakeholders can work towards implementing effective interventions and policies to optimize patient outcomes and well-being. This program was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).

QOL-06. OPTIMIZING NEUROFIBROMATOSIS CARE: A COMPREHENSIVE ECONOMIC EVALUATION OF A SPECIALIZED EXPERTISE CENTER’S IMPACT ON PATIENT OUTCOMES

Abstract Neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2) and other schwannomatoses represent a spectrum of genetic disorders characterized by the development of tumors on nerve tissues, profoundly impacting patients’ quality of life and posing complex challenges. Recognizing the imperative for comprehensive care delivery, we undertook to implement a Neurofibromatosis Expertise Center (CE) at the Centre hospitalier de l’Université de Montréal (CHUM), Quebec, Canada. Employing a robust analysis framework, we aimed to assess the economic viability of the CE by quantifying the Quality-Adjusted Life Years (QALYs) gained through centralized multidisciplinary neurofibromatosis care (cost-utility ratio = CAD/QALY gained). Leveraging data from validated questionnaires including the SF-6D, our preliminary analysis revealed significant enhancements in patients’ quality of life across diverse domains, including physical pain, visible cutaneous lesions, cognitive dysfunction, hearing loss, malignancies, psychiatric comorbidities, unemployment, physical disability, and social isolation. Notably, among the respondents (N = 115), patients receiving CE services reported a 12% increase in general health compared to a 25% decline among those without CE services. Moreover, 28% of CE patients reported improved overall health compared to 12% of those without CE services. Using the Work Productivity and Activity Impairment questionnaire (WPAI-GH), we found that cohorts followed in CE for ≥ 1 year (N = 45) experienced less work productivity losses compared to the most recent cohort (N = 32), which presented scores exceeding 6 on a 1-to-10 scale. We hypothesize that the establishment of the CE will yield profound improvements in patient health outcomes and alleviate financial strains on the Ministère de la Santé et des Services Sociaux du Québec (MSSS). Therefore, our next steps include discussing a strategy for funding application to the MSSS to ensure the accessibility of necessary care for patients. Continuing data collection and analysis will also provide a more comprehensive overview of patient characteristics and needs.