Patient Counseling Research Articles

Impact of a Nutrition and Diabetes Continuing Education Program on Primary Care Provider's Knowledge, Attitude, and Clinical Practice.

Diet/nutrition is the first-line non-pharmacological therapy in the treatment of diabetes. Diet/nutrition counseling is infrequently provided by primary care providers (PCPs), who have limited nutrition education in both medical and advanced practice provider curricula. This quality improvement project aimed to improve knowledge and attitude, and frequency of diet/nutrition counseling by PCPs among patients with uncontrolled diabetes (glycosylated hemoglobin A1c ≥8%), by providing an online continuing medical education (CME) program on diabetes diet/nutrition. At a community health center in New England, PCPs attended a live 50-minute online CME program that was developed internally, which taught PCPs current diet/nutrition guidelines and recommendations related to diabetes. Knowledge was assessed prior to and two weeks following the program, utilizing a 10-question tool, the Nutrition Management of Diabetes Assessment (NMDA). Similarly, attitude was evaluated using two subscales of the Nutrition in Patient Care Survey (NIPS): Nutrition in routine care and Physician efficacy. Chart audits of patients with uncontrolled diabetes were evaluated to assess PCPs documentation of diet/nutrition counseling four weeks prior to and six weeks following the CME program. In September 2023, PCPs (n = 29) completed the CME program. There was an improvement in knowledge in the NMDA amongst PCPs (36% difference, p < 0.001). Attitude scores from two subscales of the NIPS were evaluated and both showed improvement, however only physician efficacy was significant (15% difference, p < 0.01). There was a positive difference in the trend of diet/nutrition counseling after the education program (p < 0.05). An online CME program improved diabetes diet/nutrition knowledge and attitude of PCPs and improved counseling practices for patients living with uncontrolled diabetes. The education program provided PCPs current standards of care guidelines/recommendations, which they can utilize when counseling patients with diabetes. PCPs would benefit from dedicated continuing education programs regarding diet/nutrition therapy for chronic illnesses.

Hip Surgery is Not More Painful Than Spine Surgery in Children With Cerebral Palsy.

Posterior spinal fusion (PSF) and hip reconstruction are commonly indicated surgeries in children with cerebral palsy (CP), particularly those functioning at GMFCS levels IV and V. These are large and often painful procedures, and previous literature suggests that hip surgery is more painful than spine surgery in this patient population. The purpose of this study is to investigate pain scores and opioid use following hip and spine surgery in a large cohort of children with CP, including many patients who have undergone both types of surgery. A retrospective chart review was performed to identify children with CP who underwent hip reconstruction and/or PSF at a tertiary children's hospital between 2004 and 2022. Charts were reviewed for demographic data, pain scores, pain medication usage, duration of hospital stay, and complications. Data were collected for 200 patients (101 male, 99 female) who met inclusion criteria. Eighty-seven patients underwent hip reconstruction, 62 spinal fusion, and 51 both hip and spine surgery asynchronously. Median (interquartile range) age at the time of surgery was significantly older for spinal fusion compared with hip surgery [13.1 (4.9) vs. 8.1 (5.7) y, P <0.0001]. Length of stay was significantly longer after PSF, with a median of 6 (4) days compared with 2 (1) days after hip surgery ( P <0.0001). Both maximum and average daily pain scores were similar following hip and spine surgery, with the exception that average pain scores for hip surgery were slightly higher on postoperative day 1, hip=1.73 vs. spine=1.0 ( P <0.0001). The amount of opioids used, expressed as morphine milligram equivalents (MME)/kg were similar in the hip and spine surgery groups; however, it was significantly lower in the hip surgery group on postoperative day 0, hip=0.06 versus spine=0.17 ( P <0.0001). For the 51 patients who underwent both hip and spine surgery, the amount of opioids used mirrored that for the entire group (similar MME/kg, though only statistically significantly less on POD 0 and 3), and pain scores were not significantly different between the 2 groups except in 2 circumstances. The 2 exceptions in these 51 patients both demonstrated lower pain scores in patients after hip surgery, including lower maximum pain scores on POD 1 ( P =0.041), and lower average pain scores on POD3 ( P =0.043). This is the largest series to date comparing postoperative pain in children with CP after hip and spine surgery, including 51 of 200 patients who underwent both types of surgery. The results of this study demonstrate that hip surgery is not more painful than spine surgery in children with CP, and conflict with the traditional belief that hip surgery is more painful. This is important information for health care providers when counseling patients and families regarding these surgeries in children with CP. Level 3.

Access to patient assistance programs for rural cancer patients in an NCI designated comprehensive cancer center: A retrospective cohort study.

94 Background: 35% of Oregon’s and 14% of Washington’s populations live in rural/frontier communities. These populations often experience a higher incidence of cancer disparities across the care continuum and a disproportionate burden of the high costs associated with cancer care compared to urban populations. Methods: The Oregon Health &amp; Science University (OHSU) Knight Cancer Institute (KCI) operates a multidisciplinary cancer program catering to Oregon and Southwest Washington from its Portland-based campuses. OHSU launched an enterprise Patient Assistance (PA) program partnership with Atlas Health which included an Artificial Intelligence (AI)-powered platform integrated with the electronic health record and 4 Patient Advocates who enrolled patients into matched PA programs. Rural patients receiving intravenous (IV) infusion therapy who benefited from PA programs were compared to the overall treated population at OHSU infusion centers to determine if rural patients who are at high risk for financial toxicity were identified and provided an effective intervention. Patient zip codes were used to designate residence in urban or rural/frontier counties. Results: A retrospective analysis reviewed unique patients treated in the OHSU KCI infusion centers, PA Enrolled, and PA Awarded patient cohorts. Conclusions: The Enterprise PA program partnership notably and proportionately benefited rural communities who are at high risk for financial toxicity and experience significant cost barriers to care. OHSU collected over 599,000 which reduced the risk of bad debt for the institution and cancer related medical debt for patients. Average PA award of 1,426 was significant due to 40% of Americans cannot afford a 1,000 emergency or unexpected medical bill. This underscores that an enterprise PA program may be considered a care delivery intervention to decrease health disparities. Further study is needed to determine if increasing rural cancer patients’ access to PA programs helps improve clinical access and treatment outcomes across the spectrum of cancer care services. Patient cohort comparison 12/15/2023-3/31/2024. Patient Cohort OHSU Infusion Center Cohort Patient Assistance Enrolled Cohort Patient Assistance Awarded Cohort Total Number of Patients 9,197 554 420 Total Number of Patients Residing in Oregon and Washington 9,064 552 418 Total Number of Patients Residing in Oregon and Washington Rural Counties 1,668 117 122 Percentage Rural Patients 18% 21% 29% Drug Manufacturer Co-Pay Programs - $ 590,785.70 $ 459,095.08 Charitable Co-Pay Assistance Programs - $ 96,024.70 $ 139,981.33 Total - $ 686,810.40 $ 599,076.41 Average Expected/Received Award Per Patient - $ 1,239.73 $ 1,426.37

Talk to Me: A social media campaign about clinical trials tailored to the needs of young adults with cancer.

67 Background: Among adolescents and young adults (AYAs; 15-39 years) with cancer, clinical trial enrollment (CTE) rates range from 3% to 14%. Patient-directed interventions to improve CTE are rare. Internet-based interventions, while feasible and acceptable to AYAs with cancer, often lack patient input and engagement that are critical to success. AYAs are digital natives and report that the internet and social media are the two most important sources of health-related information. We leveraged AYA engagement with social media and designed a mixed methods research study, "Talk to Me," to create targeted social media messages to increase awareness about CTE for AYAs with cancer. Methods: Our interdisciplinary study team includes clinicians, researchers, health educators, and AYA patient advocates. We conducted 5 focus groups among a demographically, clinically, and geographically diverse group of AYAs with cancer (n=35) to identify priority topics to 1) inform the development of social media message libraries to address informational gaps and dispel myths surrounding CTE and 2) guide implementation strategies of these messages. Design mock-ups and color palettes were co-designed and co-developed with focus group participants and patient advocates through iterative feedback. Results: Guided by qualitative findings, social media posts were categorized into "introduction", "knowledge dissemination", and "addressing social, cultural, emotional, and financial issues" related to CTE. Instagram was selected to host our messages as the demographics of users most closely matched that of our target audience. Hashtags were carefully chosen based on existing posts of related material on Instagram. Links to trusted sources for additional information were embedded in the post descriptions and housed in a linktr.ee bio-landing page. The campaign was officially launched on Instagram in April 2024. We posted 3 times a week in both English and Spanish and monitored metrics biweekly to assess engagement and reach. Over nearly 2 months, 42 messages were posted, 116 users followed the account, 656 accounts were reached, 108 accounts were engaged, and 432 visited our profile page. Engagement peaked in Week 2 with 238 accounts reached and in Week 6 with 119. Overall, there were 173 likes (English=128, Spanish=43). Conclusions: An interdisciplinary, patient-informed, iterative approach to developing a social media knowledge intervention demonstrates a robust, methodologic approach to developing acceptable information and messages for AYAs who may consider participating in clinical trials.

Patient, Care Partner, and Physician Voices in Treatment Decision-Making for Multiple Myeloma.

Treatment decision-making for multiple myeloma (MM) is complex. Individuals involved in decision-making may value treatment attributes differently based on their role as a patient, care partner, or physician. This study describes those attributes, and what is most important by role. We conducted a cross-sectional online survey with consenting adult patients with MM, MM care partners, and physicians treating MM. Respondents were recruited from US panels (Inspire and M3 Global Research) between September and December 2022. Survey items were informed by a targeted literature review, qualitative interviews, and a steering committee comprising clinical experts, a patient advocate, patient, and care partner. Descriptive statistics were generated and reported in aggregate. Email invitations were sent to 8071 Inspire members interested in or posting about MM. Of these, 4427 viewed the invitation, 941 responded, and 156 patients and care partners completed the survey (17% of respondents). For physicians, 5588 were invited via Email by M3 Global Research, with 761 viewing the invitation, 214 accessing the survey link, and 137 completing the survey (64% of respondents). Duration of response, side effects, and patients' quality-of-life (QoL) were the top three treatment attributes selected across the three cohorts; alignment of these attributes was consistent among patients regardless of disease severity. Separately, patients rated QoL and the amount of caregiving needed during/after treatment as the most important factors for future treatment decisions. If more effective MM treatments were offered, care partners were more willing to assume greater family burden (77%) compared to patients (49%), and patients were more accepting of potential serious side effects (50%) than were care partners (34%). Patients with MM, care partners, and physicians consider and value various treatment decision-making factors. Recognizing and addressing these differences is critical to meeting patients' preferences, needs, and optimizing patient outcomes.

A TED Talk style patient video education intervention to improve care coordination for rural patients with early-stage cancer: A feasibility study.

236 Background: Effective care coordination is a key component of high-quality, patient-centered cancer care. However, cancer patients residing in rural areas often experience substantial barriers to care and suboptimal care coordination. To date, there is a paucity of interventions to improve care coordination for rural cancer patients. In this pilot trial, we assessed the feasibility and preliminary efficacy of a remote, tablet-based patient video education intervention focused on cancer care coordination among rural patients in Hawaii. Methods: We conducted a single-arm pilot study to assess the preliminary effects of a novel, TED-talk style patient video education intervention presented by clinicians and a patient advocate. Video content focused on cancer basics, care coordination, and self-advocacy. Eligible participants were newly diagnosed with early-stage cancer (I-III), within one month of starting adjuvant chemotherapy, able to speak/read English, and residing in rural areas (defined as RUCA ≥ 4). We assessed the feasibility and patient-reports of acceptability and satisfaction using semi-structured interviews. Validated instruments were administered at baseline and post-intervention and used to assess the preliminary effects of the intervention on patients’ perceptions of care coordination (CCI; Care Coordination Instrument) and self-advocacy (adapted Cancer Self-Advocacy Scale; Hagan et al. 2018). Descriptive statistics were used to assess study outcomes. Results: From 01/2022 to 12/2022, 19 patients enrolled on the study (21 approached); 74% were female, 42.1% identified as two or more races, 26.3% Asian, and 21.1% White. Mean age was 52.2. The majority of participants were receiving treatment for breast cancer. Five patients became ineligible after enrolling on the study (disease progression, relocation). 71.4% of eligible patients completed all assessments. No changes were observed in the overall perceptions of care coordination. Improved scores were observed for the CCI communication domain (+4.5; Cohen’s d = -0.76, 95% CI: -1.45, -0.03). For self-advocacy, there was an overall trend for improved scores for the informed decision making and connected strengths subscales. All participants reported high satisfaction with the intervention. Conclusions: Results support the preliminary feasibility, satisfaction, and acceptability of this intervention for rural patients. Although the effects on the overall perceptions of care coordination are unclear, preliminary data suggest that the intervention may improve communication aspects of care coordination and self-advocacy. Further study is needed to evaluate the intervention in other rural areas. Funding support: The HOPE Foundation for Cancer Research/SWOG. Clinical trial information: NCT05162404 .

Reimagining fertility preservation guidance for AYA patients: A quality improvement initiative.

283 Background: Infertility can be a devastating consequence for adolescent or young adult (AYA) patients, posing distinct challenges for healthcare providers striving to deliver high-quality, equitable cancer care. The rising incidence of cancer and growing population of AYA cancer survivors necessitates innovative, streamlined, and efficient processes to promote fertility preservation. While guidelines from organizations like American Society of Clinical Oncology (ASCO) and Agency for Healthcare Research and Quality (AHRQ) provide valuable recommendations, ensuring consistent adherence to these standards remains an ongoing challenge. Methods: The aim of this quality improvement project was to increase fertility preservation counseling and documentation, by 20% within 6 months without delaying chemotherapy start for newly diagnoses AYA patients (age 18-39) within a large academic medical center. Utilizing a Define, Measure, Analyze, Improve, Control (DMAIC) methodology, interventions were conducted through a series of Plan-Do-Study-Act (PDSA) cycles that included provider and staff education, referral process standardization, implementation of a best practice advisory (BPA) within the electronic health record (EHR), revision of organizational policy, and establishment of nurse touchpoints to facilitate communication. Results: The percentage of counseling and documentation in AYA cancer patients (n=83) increased by 52%, exceeding the project aim. Statistical significance was calculated using a chi-square test. Contrary to initial concerns of potential delays in beginning chemotherapy while awaiting preservation, the average time to starting chemotherapy decreased by 43%. Conclusions: Fertility preservation counseling is a critical aspect of quality outcomes for AYA cancer patients. Strategic planning of automated methods to facilitate documentation and referral was an ideal method of building quality into a large healthcare system. Establishing methods of process improvement engrained best practices, allowing for enrichment of data collection, while driving continuous quality improvement. Increased utilization of the BPA facilitated tracking of quality metrics, while promoting a patient-centered approach to fertility preservation. Interdisciplinary collaboration between physicians, nurses, and reproductive specialists fosters holistic care to enhance long-term survivorship. Fertility preservation counseling and documentation Results. Month Month Count (%) QuarterlyCount (%) 95% CI Change 95% CI P Mean days to begin chemotherapy Baseline 17 of 41 (41%) 17 of 41 (41%) 0.27 to 0.58 42 October 19 of 20 (95%) November 10 of 12 (83%) December 9 of 14 (64%) 38 of 46 (83%) 0.68 to 0.92 0.41 0.20 to 0.62 &lt;0.001 January 10 of 12 (83%) February 7 of 7 (100%) March 12 of 12 (100%) 29 of 31 (94%) 0.77 to 0.99 0.52 0.32 to 0.72 &lt;0.001 24 April 6 of 6 (100%)

Improving vaccination counseling rates in first time patients with cancer: A multi-disciplinary approach.

315 Background: ASCO guidelines 2024 recommend that “clinicians determine vaccination status and ensure that adults newly diagnosed with cancer about to initiate treatment are up to date on seasonal vaccines as well as age- and risk-based vaccines.” Prior to the study, Baylor Scott and White Hematology Oncology Round Rock (BSWHRR) clinic lacked a formalized process for vaccine education. The primary aim of this study was to increase vaccination counseling for first-time cancer patients with solid tumors or hematologic malignancies. The secondary endpoint was to optimize vaccination status for this group of patients. Methods: Inclusion criteria were patients 18 years or older with initial diagnosis of solid tumor or hematologic malignancy, receiving chemotherapy and/or immunotherapy for the first time, and treated within BSWHRR. Exclusion criteria were patients with subsequent malignancy, malignancy requiring second line chemotherapy and/or immunotherapy, or deceased. Patients meeting these criteria n=57 were collected during the pre-intervention period October 15-December 15. Post-intervention data n=52 was collected 6 weeks following the initiation of the intervention from February 18 – April 18. The intervention included a 2-sided handout containing current recommendations for vaccination schedules in immunocompromised adults. These handouts were provided along with counseling at 2 separate encounters (during the initial consult and during chemotherapy education). The handout included instructions for scheduling vaccines with the Baylor Scott and White Pharmacy and/or their PCP. This multi-disciplinary approach included nurse navigators, triage nurses, pharmacists, and physicians. A standardized documentation process was initiated and utilized for both consult and chemotherapy education encounters. Results: Following the introduction of vaccine education handouts and standardized documentation, vaccine counseling rates during the consult visit improved from 0% to 49%. Vaccine counseling rates during chemotherapy education visits increased from 0% to 71%. Overall, the number of patients that attended and were counseled during at least one of these visits increased from 0% to 70%. The secondary endpoint of increasing vaccination rates showed that non-seasonal vaccination rates improved. Pneumococcal vaccination rates improved from 33% to 42%, a 27% increase. Shingles coverage improved from 16% to 25%, a 56% increase. Conclusions: This study showed that a multidisciplinary approach, utilization of patient/physician education handouts, and standardization of documentation was effective in achieving a substantial increase in vaccination counseling rates for patients with newly diagnosed malignancy. The intervention was also effective in achieving the secondary endpoint of increasing pneumococcal and shingles vaccinations.

Patients with fibromyalgia have increased risk of 90-day postoperative adverse events following arthroscopic rotator cuff repair

BackgroundArthroscopic rotator cuff repair (RCR) is a common surgical intervention for symptomatic rotator cuff tears when conservative management fails. Understanding the potential correlation of short- and longer-term outcomes associated with defined comorbidities can help with patient selection, counseling, and related care pathways. The association of fibromyalgia, one potential comorbidity, with outcomes following RCR has not been reported in the literature. MethodsPatients with and without fibromyalgia diagnosed prior to undergoing RCR were identified from the PearlDiver Mariner161 database between 2016 and April 30, 2022, using Current Procedural Terminology (CPT) codes. Exclusion criteria were age less than 18 years, a diagnosis of neoplasm, trauma, or infection within 90 days prior to surgery, and postoperative records of fewer than 90 days. Patients with and without fibromyalgia were matched 1:4 based on age, sex, and Elixhauser Comorbidity Index (ECI).Ninety-day adverse events were assessed. Severe adverse events were defined as the occurrence of sepsis, surgical site infection, cardiac events, deep vein thrombosis, or pulmonary embolism. Minor adverse events were defined as the occurrence of wound dehiscence, urinary tract infection, pneumonia, transfusion, hematoma, or acute kidney injury. Also identified was the occurrence of any adverse event, emergency department (ED) visits, and readmission. These outcomes were compared with multivariate analysis. One-year revisions were assessed with Kaplan-Meier curves and compared with the log-rank test. ResultsIn total, 295,169 RCR patients were identified, of which fibromyalgia was noted for 12,366 (4.2%). Following matching, the final cohort sizes for those with and without fibromyalgia were 11,387 and 45,354 respectively.Diagnosis of fibromyalgia was independently associated with increased risk of all individual adverse events as well as aggregated incidence of severe, minor, and any adverse events (p<0.0001 for all). Additionally, patients with fibromyalgia had independently 90-day increased odds of ED utilization (p<0.0001). There was no statistically significant difference in reoperation between the cohorts within 1 year of surgery. Discussion and ConclusionFibromyalgia was associated with significantly increased 90-day postoperative adverse events and ED visits. These findings are relevant in surgical planning but are also balanced by a lack of difference in one-year revisions.

Improving the quality of psychiatric residency training in Isfahan University of Medical Sciences by learning teams and changing curriculum implementation: An action research study

BACKGROUND: The deficiencies in the training of psychiatric residents in Isfahan, including the segregation of residency programs by year, the confinement of training to hospital departments, and the residents’ limited exposure to the perspectives of other faculty members, had not been given significant attention. However, the inevitable alterations in the Department of Psychiatry and the impact of the coronavirus disease 2019 pandemic have brought these issues to the forefront, highlighting the need for program modifications. The objective of this study is to enhance the quality of psychiatric residency training by changing the implementation of the curriculum. METHODS AND MATERIALS: This proactive action research was conducted in six steps. In the first step, the expectations of a new action were identified. In the second step, the new action – creating learning teams – was designed and implemented; thus, eight learning teams comprising experienced professors, novice professors, and residents from various academic levels were created, who collectively engaged in patient visits, psychotherapy, counseling, and educational sessions. Additionally, the portfolio was used in the training and evaluation of the residents. Steps 3 to 6 involved evaluation using a researcher-made questionnaire, analysis and interpretation of results, and reflection and making decisions for future actions. RESULTS: Step 1 resulted in preparing a list of department expectations from new action. The second step yielded the design of a new action. The survey results showed that more than 60% of respondents agreed that the program had a positive impact on 12 out of 15 items in the questionnaire, particularly in enhancing teamwork skills, facilitating discussions about patients, and fostering residents’ accountability. However, in items related to portfolio, this percentage ranged from 40% to 53%. CONCLUSION: The implementation of learning teams as the main action in the current study has yielded positive outcomes; however, the portfolio intervention requires some adjustments. Hence, it is advisable to employ learning teams in comparable circumstances. The research team anticipates that these outcomes will enhance the quality of psychiatric residency training, positioning the country among the leading and influential nations in the region.

Measuring what really matters: Advocacy-led co-creation and accrual of a pan-cancer QoL survey.

240 Background: Implementing co-creation methods in research may provide vital input to improve accrual, retention, and research value. Advocates for Collaborative Education (ACE), a global coalition of patient, community, research, and policy advocates, used co-creation methodology with patients, survivors, and metavivors to Design, Develop , and Deploy a survey to define and quantify QoL impacts across a large sample of individuals with a diagnosis or history of cancer. Methods: With a defined primary objective to “gain insight into challenges faced by individuals with a history or diagnosis of cancer and how these challenges impact their life and quality of life,” a co-creation team of individuals with lived experience in early stage or metastatic cancers was established. In the Design phase, co-creation team members were interviewed and engaged in discussions on side effect measurement and impact. They were asked a variety of questions, including what side effects they believed were most impactful to QoL, what elements they felt were missing in conversations around QoL, and how accurately they felt QoL was measured in the clinical setting. In the Develop phase, survey questions were developed and vetted with the co-creation team. In the Deploy phase, co-creation team members, advocate members of the ACE community, and aligned advocacy groups, were key to recruiting a broad audience via electronic distribution and social media platforms. Results: Efforts resulted in the co-creation of a six-section, 93 question, IRB-exempt survey. The co-creation team identified 17 treatment-related side effects that were incorporated into the survey. Survey questions asked respondents about perceived severity of side effects, how well informed they felt about possibilities of experiencing these side effects, access to supportive care, side effects of supportive care therapies, and personal preferences for receiving cancer-related information. A unique measurement scale was shaped by the co-creation team to be more reflective of side effect impact on QoL. In five weeks, the survey accrued over 500 responses across a variety of cancer types (15+), stages (0 - IV), ages, statuses, and racial groups. Conclusions: Co-creation methods were used in Design to identify side effect experiences in cancer treatment and validate what matters most to individuals with cancer; in Develop to validate a pan-cancer survey examining what mattered to the audience of interest; and in Deploy to rapidly accrue a large and diverse set of responses through advocacy partnerships. Co-creation also identified layers of side effect management challenges that cannot be reflected in current rubrics for QoL measurement. While co-creation may seem daunting, this study provides a template for effective, quality partnerships between study teams, advocates, and advocacy groups for implementing co-creation methods in the cancer setting.

Patterns of Corticosteroid Prescriptions among Patients at Community Pharmacies in Lahore, Pakistan

Background: Corticosteroids are a class of steroid hormones produced by the adrenal gland and are used to treat many diseases, including autoimmune diseases and inflammatory diseases. Besides their role in many diseases, long-term use, misuse, and overuse cause side effects including hypertension, diabetes mellitus, and osteoporosis. Objective: The aim of current study is to evaluate the prescription pattern of corticosteroids in different community pharmacies, among patients, in Lahore. Methods: The cross-sectional stratified convenient study performed using a validated questionnaire to analyse the prescription pattern of corticosteroids in patients at different community pharmacies in Lahore. Total 92 patients are participating in this study. Results: A total of 92 patients take part in the study. In this research 67.4% females are participated. The average age of patients is above 30 years. Asthma is the most common reason for corticosteroids administration (19.6%) followed by rheumatoid arthritis (12.0%) whereas in inflammatory bowel disease they are least prescribed (1.1%). Prednisolone is the most prescribed drug (33.7%) and Oral route is the frequently given route. Conclusion: Our data shows that the prescription pattern of corticosteroid must be improved. Health care providers should pay attention to counseling of patients and guide them about dose tapering to avoid adverse effects.

Call to quit: Results of a remote, longitudinal tobacco cessation program.

356 Background: Tobacco cessation counseling remains suboptimal for patients with cancer. The current iteration of the Dana-Farber Cancer Institute Tobacco Cessation Program was established in 2021 to provide virtual, longitudinal tobacco session counseling to patients with cancer. Here, we report the Program’s experience. Methods: The DFCI Tobacco Cessation Program data from 2021 to 2023 was analyzed. Descriptive statistics summarized demographics and tobacco cessation experiences from baseline and follow-up visits. Results: Of 227 patients referred to the Program and included in the analysis (Table 1), 161 declined participation. 63 participants attended a baseline visit, of whom the median age for first cigarette was 15 years (range: 10-32) and the median age for regular tobacco use was 17 years (range: 10-61). Prior to baseline, most participants (n=43) indicated using tobacco daily; the median number of daily cigarettes was 11-15. Many (n=41) reported smoking within 30 minutes of waking up, and most considered tobacco use to be an addiction (n=50). Though a considerable number of participants (n=27) reported quitting smoking to be extremely important to them, confidence in quitting varied; the most frequently selected confidence level was 5/10 (n=14). Past use of tobacco cessation drugs was reported by one-third of participants (n=22); past use of nicotine replacement therapy was reported by nearly half (n=30). The most frequently reported perceived benefit of quitting smoking was better health (n=48). 51 participants had at least one follow-up visit (median: 4, range: 1-23). At the time of first follow-up, 10 reported decreasing the number of cigarettes smoked per day, 20 reported no change, and 3 reported an increase. However, among 24 participants who attended a fifth visit, 8 reported a decrease and 6 reported no change. Of 11 patients who had attended at least 10 visits, 5 reported decreasing their number of daily cigarettes. 13/63 (20.6%) of all participants reported quitting smoking after enrolling, with a median time from baseline assessment to smoke-free status of 34 days. Conclusions: Remote, longitudinal tobacco cessation programs provide an effective way to increase access to tobacco cessation counseling for patients with cancer. However, limitations include high decline rates and loss to follow up. Future analysis of our program will help better understand tobacco cessation efforts. Demographics Approached (n=227) Attended Baseline (n=63) Median Age 60 62 Sex Female 130 (57.3%) | Male 94 (41.4%) |Prefer not to say/Unknown 3 (1.3%) Female 36 (57.1%) |Male 26 (41.3%) |Prefer not to say 1 (1.6%) Cancer Lung 80 (35.2%) |Breast 46 (20.3%) |Head &amp; Neck 27 (11.9%) |GI 24 (10.6%) Lung 22 (34.9%) |Breast 9 (14.3%) |Head &amp; Neck 11 (17.5%) |Lymphoma 6 (9.5%) Race: White 191 (84.1%) 52 (82.5%) Black 17 (7.5%) 4 (6.3%) Asian 4 (1.8%) 1 (1.6%) Other/Prefer not to say 15 (6.6%) 6 (9.5%) Hispanic 8 (3.6%) 3 (5.1%)

Nutritional counseling for patients cured of breast cancer. the 5-year experience of a food therapy service

Nutritional counseling for patients cured of breast cancer. the 5-year experience of a food therapy service

Austrian consensus statement on the diagnosis and management of hypertrophic cardiomyopathy.

Hypertrophic cardiomyopathy (HCM) is the most common inherited heart disease that is characterized by left ventricular hypertrophy unexplained by secondary causes. Based on international epidemiological data, around 20,000-40,000 patients are expected to be affected in Austria. Due to the wide variety of clinical and morphological manifestations the diagnosis can be difficult and the disease therefore often goes unrecognized. HCM is associated with asubstantial reduction in quality of life and can lead to sudden cardiac death, especially in younger patients. Early and correct diagnosis, including genetic testing, is essential for comprehensive counselling of patients and their families and for effective treatment. The latter is especially true as an effective treatment of outflow tract obstruction has recently become available in the form of afirst in class cardiac myosin ATPase inhibitor, as anoninvasive alternative to established septal reduction therapies. The aim of this Austrian consensus statement is to summarize the recommendations of international guidelines with respect to the genetic background, pathophysiology, diagnostics and management in the context of the Austrian healthcare system and resources, and to present them in easy to understand algorithms.

Italian report on RARE epilepsies (i-RARE): A consensus on multidisciplinarity.

Rare and complex epilepsies encompass a diverse range of disorders characterized by seizures. We aimed to establish a consensus on key issues related to these conditions through collaboration among experienced neurologists, neuropediatricians, and patient advocacy representatives. Employing a modified Delphi method, a scientific board comprising 20 physicians and 4 patient advocacy representatives synthesized existing literature with their expertise to formulate statements on contentious topics. A final 32-member expert panel, representing diverse regions of Italy, validated these statements through a two-round voting process, with consensus defined as an average score ≥7. Sixteen statements reached a consensus, emphasizing the necessity for epidemiological studies to ascertain the true prevalence of rare epilepsies. Etiology emerged as a crucial factor influencing therapeutic strategies and outcome prediction, with particular concern regarding prolonged and tonic-clonic seizures. The importance of early implementation of specific drugs and non-pharmacological interventions in the treatment algorithm for developmental and epileptic encephalopathies (DEEs) was underscored. Multidisciplinary care involving experts with diverse skills was deemed essential, emphasizing non-seizure outcomes in adolescence and adulthood. This national consensus underscores the imperative for personalized, comprehensive, and multidisciplinary management of rare epilepsies/DEEs. It advocates for increased research, particularly in epidemiology and therapeutic approaches, to inform clinical decision-making and healthcare policies, ultimately enhancing patients' outcomes. The modified Delphi method is broadly used to evaluate debated topics. In this work, we sought the consensus on integrated and social care in epilepsy management. Both representatives of high-level epilepsy centers and patients' caregivers were directly involved.

Leveraging a geographic information system (GIS) to identify lung cancer care disparities and opportunities in rural Appalachia.

78 Background: The Rural Appalachian Lung Cancer Screening Initiative is led by the Association of Cancer Care Centers (ACCC) and patient advocacy partners. Recognized by the White House Cancer Moonshot, this initiative seeks to improve lung cancer screening rates by partnering with health systems in rural Appalachia to develop and implement interventions. An 11-county region bordering West Virginia, Virginia, and Kentucky has significantly higher mortality and lung cancer incidence rates than the national rates of 35.0 and 54.0 per 100,000 people, respectively (Table 1). This region was identified as the focus area for the initiative with participation from health systems in Pike County, KY, and Buchanan County, VA. Methods: To understand availability of local resources, ACCC developed an interactive GIS tool that identifies screening and referral locations as well as essential services in the region. Lung cancer screening sites, oncology services, mammography locations, critical access hospitals, NCI-designated cancer centers, federally qualified health centers (FQHCs) and look-alikes, rural health clinics, and primary care/general health services were identified from publicly available data and data requested from state departments of health. Facilities were contacted to verify services when unclear. STATA 18 was used to combine and clean data for upload to Google MyMaps, creating an interactive map. Results: Of the 11 counties, all contain at least 1 FQHC or primary care site. However, 5 of the counties do not have lung cancer screening sites and 7 of the counties do not have oncology service sites (Table). The closest NCI-designated cancer centers to the participating sites are over 140 miles away. Conclusions: While there is a notable presence of primary care, access to lung cancer screening and oncology care is limited. Sites can utilize this map to inform development of interventions by considering potential geographical challenges, identifying referral sites, outreach opportunities, and partners to facilitate lung cancer screening and education. Further, these methods are replicable, and can be used to inform current access to care and improve equitable delivery of lung cancer screening in regions across the U.S. Distribution of lung cancer mortality, incidence, and infrastructure within initiative focus region. Region Mortality*(per 100,000) Incidence*(per 100,000) # Lung Cancer Screening Sites # Oncology Services Sites KY (1 county) 70 109.3 2 2 VA (6 counties) 45.0 – 61.4 42.9 – 68.6 4 3 WV (4 counties) 57.6 – 74.8 100.4 – 111.5 1 0 *Lung &amp; Bronchus, 2016-2020 age-adjusted death rates (KY, VA, WV) and incidence rates (KY, WV). Lung &amp; Bronchus, 2015-2019 age-adjusted incidence rate (VA). Source: statecancerprofiles.cancer.gov.

Oncology nurses’ assessment of providing equitable care for patients with developmental disabilities.

164 Background: Access to quality health care can be challenging, especially for people with developmental disabilities (PwDD). Developmental Disabilities (DD) occur before age 22 and include physical, learning, language, or behavioral impairments. Studies of training and experience of oncology nurses (RNs) who care for PwDD are limited. The purpose of this study was to explore to what extent RNs working in a community oncology practice are prepared to provide quality patient-centered care to patients with DD. Methods: As no tool exists to capture oncology RNs experiences caring for PwDD, a survey was developed with input from a group of oncology nurse experts. Both academic IRB and Privacy Board approvals were completed prior to recruitment. A Qualtrics survey link was shared with RNs and Advanced Practice RNs via email. Questions about nurses’ background, perceptions of clinic resources and accommodation and referral to clinical trials were included in the survey. Nurses were also presented with 3 scenarios of oncology patients who have either been blind since birth, have autism or cerebral palsy. RN respondents were asked how to care for them, what challenges might be encountered, and what resources would be available to them. Results: Usable surveys were completed by 122 RNs. 77 RNs cared for PwDD in a statewide Oncology practice, 81 RNs had previously cared for PwDD in any setting and 54 RNs have friends or family members with DD. Only 7 RNs reported no experience with PwDD. Seven nurses knew of PwDD who had participated in clinical trials. Themes identified through the qualitative analysis include Accommodations, Strategies, Communication and Referrals. Conclusions: This study provides an initial step in understanding how to reduce disparities for oncology patients with DD. Key elements revealed additional training needs, standardized facility accommodation needs, and advocacy for clinical trials participation. Through a team approach and engagement with patient advocacy groups, the challenge of engaging PwDD in clinical trials will be tackled. More training and resource education for RNs and staff regarding care of PwDD will be built and disseminated through a standardized process to bridge gaps to impact delivery of care.

Colorectal Cancer Alliance: Promoting prevention and early detection with screening navigation and a personalized recommendation via a digital screening quiz tool for colorectal cancer.

38 Background: Evaluating the effectiveness of a Colorectal Cancer screening navigation model delivered in a digital platform offered by a patient advocacy organization. Designed as a digital screening quiz tool and live navigation to promote CRC screening, the Colorectal Cancer Alliance’s Screening Quiz is a risk stratification tool that connects respondents to live certified cancer care navigators delivering evidence-based interventions to increase CRC screening, education and patient and family support. The framework utilizes small and mass media, one-on-one education and patient navigation services to help address and reduce barriers to care. Critical interventions which research shows that on-time screening for CRC leads to better outcomes. Methods: The Screening Quiz has been promoted through social sharing, community outreach, media, including influencer campaigns to increase outreach to at-risk communities. Questions assess personal and family history, hereditary syndromes, and demographics to provide a CRC screening recommendation based on current USPSTF guidelines. Respondents overdue for screening are triaged to the Alliance’s patient navigation team. This interaction includes phone calls and emails for symptomatic individuals/ high risk for CRC, telephonic and email for average-risk uninsured, and emails for average-risk insured. At-risk individuals are connected to resources, such as financial assistance, free at-home screening tests, and colonoscopy scheduling services. Results: July 2022 to March 2024, the Screening Quiz provided over 45,000 screening recommendations. The median age of respondents was 47; 32% of respondents were between the ages of 45 to 64. Of the respondents, 29% were male and 71% were female. Most were White (75.6%), nearly half of those who opted into navigation identified as BIPOC, including 14.7% Black/AA, 17.8% Hispanic or Latino, 6.1% Asian, and 2.0% AI/AN. Additionally, 9.7% of respondents identified as ethnically Hispanic/Latino with another race. Most respondents were symptomatic (67.4%) but 6.4% were asymptomatic high-risk. These two groups represented 89% of 1,599 respondents triaged to patient navigation. Conclusions: This digital screening tool and live navigation framework may serve as a key solution in driving CRC screening compared to other interventions. Providing access to live navigation, educational resources, and support services for CRC screening and diagnosis. The Alliance is uniquely positioned with its national network of volunteers, partners, and community presence to effectively reach at-risk communities. Aligning with the science of evidence-based interventions, the Alliance will continue to leverage the Screening Quiz in partnership with healthcare and community stakeholders to close Colorectal Cancer screening gaps.

Position paper of the Austrian Society for Rheumatology and the Austrian Society for Pneumology on the diagnosis and treatment of sarcoidosis 2024

In many cases sarcoidosis is a multisystemic disease that requires interdisciplinary medical cooperation in the diagnostics, treatment and medical care during follow-up. Due to the often chronic course, it is of utmost importance to include patients with their priorities and wishes at an early stage and extensively in disease management and to establish a shared decision making whenever possible. In the process of writing this joint position paper, the expert group on interstitial and orphan lung diseases of the Austrian Society for Pulmonology and the working group on rheumatological lung disorders of the Austrian Society for Rheumatology and Rehabilitation sought to include patient advocacy groups as well as experts for rare organ manifestations of sarcoidosis. This position paper is not only meant to reflect current scientific and clinical standards but should also focus the national expertise and by networking and exchange to be a first step to strengthen cooperation between stakeholders to ultimately improve care for patients with sarcoidosis.