Patient Support Organisation Research Articles

Internet-based enrollment of a myositis patient cohort-a national experience.

Recruitment for idiopathic inflammatory myopathies (IIM) research is a challenge due to the rarity of the disease and the scarcity of specialized myositis centers. Online recruitment may be a feasible alternative to reach rare disease patients. We evaluated various online recruitment methods in a large longitudinal IIM cohort. The "Myositis Patient Centered Tele-Research" (My Pacer) is a prospective 6-month observational study of IIM, recruited online and through traditional clinic visits. We utilized diverse recruitment methods, such as physician referrals, social media, websites, direct emails, and partnerships with patient-support organizations. Participants self-enrolled and completed pre-screening, e-consenting, and release of medical information via the study-specific app or website. We compared the effectiveness of various recruitment and enrollment methods and the characteristics of the population recruited. A total of 841 participants completed the pre-screening; 408 completed e-consent and registration. From those, 353 (86.5%) were remotely recruited. Email (201; 49.26%) and social media (77; 18.87%) were important recruitment tools. Patient-support organizations were responsible for disseminating the study to 312 (75.46%) participants. The study app was used by 232 (65.72%) individuals for enrollment, with app users being slightly younger than website users (p = 0.001). Participants were mostly female 317 (77.76%), mean age of 54.84 years, White 328 (80.42%), Black 49 (12%), Asian 13 (3.26%), and non-Hispanic 378 (92.65%). Our study reached all U.S. regions and 45 (90%) U.S. states. Social media and partnerships with patient-support organizations lead to a high rate of recruitment, with a wide reach, and a reasonably diverse population.

Patient-centered development and dissemination of MTCEducate.org, an online educational aid for patients with a rare cancer.

e13655 Background: Patients with rare cancers are subject to clinical vulnerability due to limited access to expert clinicians, equivocal treatment options, and a lack of accessible, reliable information. Medullary thyroid cancer (MTC) is a rare cancer often characterized by an advanced, progressive, chronic disease state for which there is clinical equipoise in treatment decisions. In a previous needs assessment, we learned from MTC patients, their caregivers, and treating physicians about the desire for education at each disease stage and strategies to convey patients' priorities to clinicians. Here, we report the patient-centered development of a novel online educational resource and decision aid, MTCEducate.org, its dissemination, and an analysis of its usability and acceptability. Methods: Working with a stakeholder group of MTC patients, caregivers, and clinicians, we used our prior needs assessment results to guide development and refinement of MTCEducate.org, including storyboarding and iterative patient feedback. The finalized site was strategically promoted through patient support organizations, a patient-run Facebook group, the American Thyroid Association, multiple conferences, and a robust MTC Registry listserv. Site metrics were assessed via Google Analytics, and site usability and acceptability were evaluated via an online survey with Likert scale questions. Results: MTCEducate.org underwent 5 rounds of patient feedback with 11 patients total to achieve saturation and finalization. Over its first 9 months, the site had 1878 unique visitors; of these, 65% used a mobile device to visit the site, and 35% used a desktop computer or tablet. Visitors accessed the site most often via direct emails or newsletters (49%) and Facebook (49%). Seventy-one visitors fully completed the site usability and acceptability survey. Most respondents identified as women (76%) and as non-Hispanic White (91%). The majority were ≥45 years old (87%) and had an associate’s degree or higher (93%). Most were MTC patients or survivors (91.8%), and most responded correctly to MTC knowledge–based questions about tumor markers (96%), lymph node dissection (94%), and FDA-approved medications (71%). Most found the site easy to use (88%) and well-integrated (84%), and most could learn to use it quickly (86%) and confidently (81%). Conclusions: Patients, especially those with rare tumors, need trustworthy educational and decision aids that provide evidence-based, reliable information and support shared decision-making. Using a patient-centered approach, we created a product whose multipronged deployment reached a unique audience. The site’s visitors’ lack of racial and ethnic diversity as well as their advanced educational status underscores the need to understand preferred access, communication, and educational resources desired by underrepresented populations.

Abstract PO4-09-08: Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian Cancer

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis. However, evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. We conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer, to understand their perceptions of their familial risk of HBOC and interest in genetic testing. In phase 1 of this study, participants were recruited from the networks of patient support organizations and historically Black sororities representing mostly highly educated and well insured patients. In phase 2, participants were recruited from a family medicine safety net clinic in Jacksonville, FL for socioeconomic diversity. Participants in both cohorts frequently expressed a lack of awareness about their family cancer history and identified many barriers to family disclosure of a cancer diagnosis. These include a culture of silence around medical issues and a belief that personal difficulties should be kept to oneself. Practical and cultural barriers to family history sharing were magnified among those with lower socioeconomic status. Many participants in both cohorts indicated a strong desire to understand their own risk of HBOC. They also expressed interested in genetic testing to proactively mitigate risk to themselves and future generations. Understanding of the potential relevance of HBOC testing to one’s personal health and post-test actionability was variable across both groups, although perceptions of genetic testing were generally favorable. These findings suggest that culturally tailored educational materials and alternative clinical modalities to collect family health history may be beneficial to improve timely identification of Black women who meet NCCN Guidelines for HBOC testing. Specifically, greater attention should be given to addressing barriers that led to underestimation of HBOC risk among patients experiencing disparities driven by adverse social determinants of health. Citation Format: Kirsten Riggan, Jane Yap, Ewan Cobran, Michele Halyard, Sarah James, Marion Kelly, Daphne Phillips, Megan Allyse. Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian 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 PO4-09-08.

Healthy Sleep Practices for Consumers of Home Total Parenteral Nutrition: A Mixed-Methods Community-Based Participatory Study

BackgroundConsumers of overnight home parenteral nutrition (HPN) often experience sleep disruption; however, existing healthy sleep recommendations are widely inapplicable to consumers. ObjectivesThe aim of this mixed-methods, community-based participatory research study was to develop tailored recommendations on healthy sleep practices for HPN consumers. MethodsThe multipart study involved the following: 1) an initial draft of sleep recommendations based on the evaluation of existing general sleep hygiene guidelines by an expert panel of clinicians and consumers with lived experience; 2) semi-structured focus groups with consumers and clinicians; 3) pre- and post-knowledge tests completed by consumers, and 4) final approval of the recommendations by the expert panel. ResultsThe literature synthesis resulted in 51 recommendations evaluated for relevance for HPN consumers. Focus groups with 20 HPN consumers and clinicians contributed additional recommendations based on lived experience. Ultimately, the final resource included recommendations spanning 4 sections: getting ready for bed, preparing the bedroom for sleep, daytime behaviors, and overall strategies for better sleep. Of the 36 recommendations, 58% were derived from existing general sleep hygiene guidelines, and the remaining 42% addressed sleep challenges experienced uniquely by consumers, including nocturnal polyuria, noise/light from medical equipment, and infusion schedules. Knowledge tests completed by 10 additional consumers indicated a modest increase in sleep health knowledge. ConclusionsThe curated healthy sleep resource tailored for HPN consumers was facilitated by a multidisciplinary expert panel, a strategic collaboration with members of the HPN community and their clinicians, and in partnership with patient advocacy and support organizations. The wide distribution of these resources may improve the overall well-being of HPN consumers.

The book is just being written: The enduring journey of parents of children with emerging- ultrarare disorders.

Ultra rare disorders are being diagnosed at an unprecedented rate, due to genomic sequencing. These diagnoses are often a new gene association, for which little is known, and few share the diagnosis. For these diagnoses, we use the term emerging-ultrarare disorder (E-URD), defined as <100 diagnosed individuals. We contacted 20 parents of children diagnosed with an E-URD through the Duke University Research Sequencing Clinic. Seventeen completed semi-structured interviews exploring parental perspectives (7/17 had children in publications describing the phenotype; 4/17 had children in the first publication establishing a new disorder). Data were analyzed using a directed content approach informed by an empowerment framework. Parents reported a range of responses, including benefits of a diagnosis and challenges of facing the unknown, some described feeling lost and confused, while others expressed empowerment. Empowerment characteristics were hope for the future, positive emotions, engagement, and confidence/self-efficacy to connect with similar others, partner with healthcare providers, and seek new knowledge. We identified a subset of parents who proactively engaged researchers, supported research and publications, and created patient advocacy and support organizations to connect with and bolster similarly diagnosed families. Other parents reported challenges of low social support, low tolerance for uncertainty, limited knowledge about their child's disorder, as well as difficulty partnering with HCPs and connecting to an E-URD community. An overarching classification was developed to describe parental actions taken after an E-URD diagnosis: adjusting, managing, and pioneering. These classifications may help genetic counselors identify and facilitate positive steps with parents of a child with an E-URD.

Literature review and protocol for a prospective multicentre cohort study on multimodal prediction of seizure recurrence after unprovoked first seizure

IntroductionEpilepsy is a common neurological disorder characterised by recurrent seizures. Almost half of patients who have an unprovoked first seizure (UFS) have additional seizures and develop epilepsy. No current predictive...

Beta thalassemia: Looking to the future, addressing unmet needs and challenges.

Thalassemia management has reached new milestones, with new therapies promising the dawning of a new era. However, conventional and new approaches require accessibility, affordability, acceptability/adherence by patients, and medical expertise from healthcare providers. Current treatments still do not offer the expected duration and quality of life, and inequalities in patient care are almost a universal phenomenon. To understand the requirements to achieve improved care, including the adoption of new therapies, for the maximum number of the global patient population, it is necessary to recognize the weaknesses that are experienced in the present so that future corrective action can be taken. Deficits in service provision are due to poor political and financial support, lack of prioritization during resource rationing, and absence of epidemiological information for policy making. These system weaknesses require improved resource management and would benefit from patient support organizations, improved psychosocial support and patient welfare, and an increase in professional expertise through educational programs. Medical products and technology must also be made affordable and widely available, and the curative treatments and cheaper approaches to technology must be recognized as resource saving. Improvements in the access to innovative and quality care, and even a cure, require concerted actions by all stakeholders, including physicians and the patient community.

Abstract A067: Perceptions and experiences of Black women on hereditary breast and ovarian cancer genetic testing

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis but evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. To understand Black women’s perspectives on HBOC genetic testing and potential factors influencing this decision, we conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer. Participants were recruited via the networks of patient support organizations and sororities as well as at a family medicine safety net clinic in Jacksonville, FL. Participants frequently expressed a lack of awareness about their family cancer history; many cancer patients stated that they only became aware of extensive family history upon their own diagnosis. Lack of family history sharing was attributed to a culture of silence around medical issues and a desire to protect family members from difficult information. However, most participants indicated a strong desire to understand their own risk of HBOC and were interested in genetic testing. Participants with a personal diagnosis were motivated to undergo HBOC genetic testing to reduce the risk for future generations. Clinical experiences with the offer of HBOC genetic testing were variable, with a few expressing that they had to make repeated inquiries from a provider to understand the relevance of the test to their own health. These findings suggest that investigation into alternative clinical modalities to collect family health history may be beneficial to identify Black women who meet NCCN Guidelines for HBOC testing. In contrast to the literature suggesting hesitancy for HBOC genetic testing, many participants perceived genetic results as having a positive impact for their medical decision-making and family's health. The development of patient materials and provider education on cultural and social factors that influence the uptake of HBOC genetic testing is also needed. Citation Format: Kirsten A. Riggan, Michele Halyard, Sarah E. James, Marion Kelly, Daphne Phillips, Megan A. Allyse. Perceptions and experiences of Black women on hereditary breast and ovarian cancer genetic testing [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A067.

Predisposing Factors in Preventing The Transmission of Drug-Resistant TBC: A Qualitative Study in Jember

Drug-Resistant Tuberculosis (DR TB) is a form of tuberculosis caused by Mtb bacteria resistant to anti-tuberculosis drugs (OAT). The prevalence of DR TB in Jember has significantly increased over the years, and many still refuse treatment. These individuals actively spread the bacteria to people at home or in the workplace. This research aims to identify predisposing factors in preventing the transmission of DR TB based on knowledge, attitudes, and beliefs. It is a qualitative case study involving primary subjects, DR TB patients, additional information from patient support organizations, and health department officials in Kab. Jember. The criteria for research subjects are residing in Kab. Jember, undergoing treatment, and willing to participate. The subject selection technique uses purposive sampling, resulting in 10 individuals. Data collection techniques involve in-depth interviews and observations. Data presentation follows the guidelines of Milles and Huberman, employing Thematic Content Analysis (TCA) for analysis. Data validity checks use credibility and dependability tests with source and technique triangulation. The research results indicate varying knowledge among subjects regarding DR TB prevention, with most obtaining information from healthcare professionals and patient support. In terms of attitude perspectives, all subjects show a positive response, expressing willingness to prevent DR TB transmission. Belief perspectives reveal diverse actions in DR TB transmission prevention. Most trust advice from healthcare professionals and patient support, while a minority still believe in herbal treatments and the culture of "tirah" to support TB treatment. In conclusion, knowledge, attitude, and belief perspectives are positive, but there is room for improvement in the behavior of implementing DR TB transmission prevention measures.

Communication That Enables Shared Decision-Making in Myelodysplastic Syndrome Is Suboptimal: Early Results from the Cancer Experience Registry

Background: Myelodysplastic Syndromes (MDS) are a heterogeneous group of marrow failure diseases whose prognosis and treatments are guided by marrow morphology, degrees of cytopenias, and genetic changes. Due to the complexity of the disorder, combined with the advanced age and frailty of most patients, conveying crucial information for shared decision-making poses challenges. Despite efforts designed to enhance communication, there is limited understanding of these initiatives' effectiveness. Methods: The Cancer Experience Registry® is an ongoing online research study conducted by the Cancer Support Community that seeks to uncover the emotional, physical, practical, and financial impact of cancer from the patient's perspective. In association with the MDS Foundation, this observational, cross-sectional study enrolls patients with MDS who provide socio-economic and clinical history, supplemented with information related to their MDS diagnosis. Frequencies and descriptive statistics are presented. Results: Between December 2021 and February 2023, 140 MDS patients joined the registry. By self-report, the study population was 51% female and 91% non-Hispanic white with a median age 61 (range 34-93). Like other cancer disease cohorts in the online registry, the MDS population was highly educated (81% attending college and 31% obtaining advanced degrees). 18% reported gross annual incomes less than $40,000 but 29% reported incomes above $80,000 (with 25% not responding). 70% were retired, 15% were still employed and 11% considered themselves unemployed due to disability. 41% of the patients were newly diagnosed (disease duration less than 1 year) and an additional 19% had MDS for less than 2 years. Interestingly, 24% carried a diagnosis of MDS for more than 6 years (including 11% reporting &amp;gt;10 years duration). 51% were in active treatment, 18% were between therapies, and 26% had never received any MDS-directed therapy. 76% self-reported a primary MDS diagnosis and 7% secondary MDS, with the remainder unsure. 33% of the respondents did not know their WHO morphologic subtype with 13% stating that they were never informed and 16% unsure if they were told this information. Similarly, although the IPSS-R is a critical determinant of prognosis and informs treatment decisions, 23% could not recall this score with 11% stating that they were not told their IPSS-R and 9% not sure if they were informed. Among 118 respondents, only 18% could remember their genetic testing results. 120 participants answered questions regarding whether they received additional assistance with MDS-related information and when this was provided. By patient recall, general information about MDS was provided to 78% at the time of diagnosis and an additional 5% after starting treatment. Help in understanding the WHO subtype and IPSS-R was remembered by 41% and 52%, respectively, at the time of diagnosis, and 8% and 9% after starting treatment. A third could not recall being informed about genetic mutational testing. Information about the possibility of MDS transforming into AML was not recalled by 21%. Information about transfusion support was remembered by 46% at the time of diagnosis and 17% after starting treatment (with 29% stating that they had not received information about transfusions and 8% unable to recall). A discussion about transplant options was remembered by 67%. Although a quarter of patients have never received therapy, 32% stated that they had never had a discussion of treatment options and an additional 6% were unsure if a discussion had occurred. A discussion about specific MDS medications was remembered by 51% at the time of diagnosis and 19% only after the start of therapy, with 30% not recalling any assistance in understanding medication options. Conclusions: Based on the early results of the Cancer Experience Registry® derived from a cohort of highly educated and motivated MDS patients, it appears that effective communication about MDS and treatment options is suboptimal. A significant proportion of respondents were unable to recall information about their diagnosis critical to informed shared decision-making. Given the complexities of an MDS diagnosis, additional efforts to educate patients are necessary. Patient support organizations, such as the Cancer Support Community and the MDS Foundation, can serve as valuable educational resources.

Rheumatology Patients' Experiences of a Mandatory Nationwide Transition to an Adalimumab Biosimilar.

Transitions to biosimilars are common to reduce the cost burden of biologics. While brand changes can be daunting for patients, few studies have explored patients' experiences with the transitioning process. This study examined rheumatology patients' experiences with a mandatory nationwide brand change to an adalimumab biosimilar. People with rheumatic diseases involved in the adalimumab transition in Aotearoa New Zealand completed a nationwide online survey. Participants (n = 117, 48% with rheumatoid arthritis) reported their satisfaction with the biosimilar, logistics and supply, information and communication, and availability of support. They also reported what did and did not go well during the transition and provided recommendations for future transitions. The mean [SD] satisfaction score with the transition was 6.2 [3.2] on a 0-10 scale, with 10 indicating high satisfaction. Participants were the least satisfied with the support and information from patient support organizations, and training for the device during the transition. Participants were most satisfied with the biosimilar supply, support from pharmacists, and how early they were informed before the transition occurred. After the transition, participants were less satisfied with the device quality, patient support program, biosimilar safety and efficacy, and the provision of alcohol wipes and sharps bins (p < 0.05 for all). Satisfaction with training for the biosimilar device (B = .25, p = .036) predicted overall satisfaction. Participants appreciated less injection pain and the ease of the biosimilar device. The lack of alcohol wipes and loss of the bio-originator support program were viewed negatively. Future biosimilar transitions should ensure the availability of alcohol wipes, sharps bins, and a comparable patient support program. Patient support organizations could be involved in providing information to patients about the change.

An analysis of Plan, Do, Study, Act for a supportive care program for patients with metastatic breast cancer.

376 Background: Patients with metastatic cancer have unique survivorship needs. Recent studies show patients with advanced cancer have unmet needs in the following categories: health information (31%), psychosocial support (27%), symptom management and general wellness support (23%) (Hart, et al., 2022). The Living Well with Advanced Breast Cancer Clinic (LWABC) was established in 2017 to address these unmet needs. This multidisciplinary clinic provides the patient and caregiver(s) an individual visit with a medical oncologist, integrative medicine physician, palliative medicine physician, dietitian, and nurse navigator. The patient is provided in-depth education and personalized supportive care plans. Methods: Over recent years, clinic staff have utilized the Plan, Do, Study, Act (PDSA) (Taylor, et al., 2014 ) methodology to refine operations and improve patient care. In 2021, the plan phase was initiated with incorporation of a nurse navigator and program manager for the clinic. Nurse navigation services have been shown to improve patient and caregiver knowledge as well as quality of life and was deemed an important addition to the program (Oncology Nursing Society, 2018). At the beginning of calendar year 2022, in the “do” phase, the nurse navigator/program manager was hired and implemented pre-visit phone calls as well as navigation services for patients. These services include assessment of needs, patient education, provision of community resources, and assistance with scheduling referrals. At the beginning of calendar year 2023, use of the NCCN distress thermometer and problem list was initiated. The current phase, “study,” includes development of a dashboard for monitoring clinic operations. Review and assessment of distress thermometer data is ongoing. Results: When comparing calendar year 2021 to 2022, the clinic has seen increases in referrals (40 in 2021 to 65 in 2022), number of patients seen (31 in 2021 to 46 in 2022), and unique patient zip codes (28 in 2021 to 42 in 2022). There was also a reduction in late cancellation rates from 15.9% (2021) to 7.2% (2022). Late cancellation is defined as any appointment cancelled 24 hours or less prior to scheduled visit. Conclusions: Utilizing the PDSA cycle clinic staff have seen operational improvements over the last two years. Currently, this supportive care program remains in a “study” phase and will continue to evaluate progress and patient outcomes. Results from the act phase will be utilized to continue expansion of the clinic and services in the future. Further aiding this endeavor is an embedded patient advocate and ongoing outreach and collaboration with patient support organizations.

Associations Among Medical Therapy, SelfAdministered Exercise, and Characteristics of Ménière's Disease.

The aim of the current study was to explore the associations among different therapeutic procedures, self-administered exercise, and characteristics of Ménière's disease. The study used a retrospective design and included 539 people with Ménière's disease who were focusing on self-administered exercise. The mean age and history of Ménière's disease among these participants were 61.9 years and 15.6 years, respectively. Of the participants, 79.5% were female. The data were collected by an electronic questionnaire that focused on symptoms of Ménière's disease, exercise and training habits, balance problems, impacts of the complaints, quality of life, medical treatment, physiotherapy, and psychotherapy. Of the participants, 79.3% used medical treatment. Betahistine (56.8%) was the most popular followed by periodical anti-emetic use (41.0%) and diuretics (22.4%). Of the participants 70% were doing some self-administered training. The frequency of training depended on age, severity of balance problems, vestibular drop attacks, and gait problems. The type of training depended on age, quality of life, vestibular drop attacks, and gait problems. No association was found between vertigo and frequency/type of balance training. The use or effect of therapeutic procedures for Ménière's disease patients was not related to symptoms experienced. Most participants with Ménière's disease used training programs that aimed to alleviate their condition, especially balance-, gait-, and vestibular drop attack-associated problems. Patient support organizations should be working to help characterize the types of balance disorders people are dealing with in order to individually tailor a rehabilitation program to the patient's needs.

Anti-epileptic shortages are ‘concerning’, patient support organisations say

Anti-epileptic shortages are ‘concerning’, patient support organisations say

A Qualitative Study of the Impact of the COVID-19 Pandemic on Metastatic Breast Cancer Care.

The COVID-19 pandemic substantially impacted the delivery of oncology care, particularly for individuals with metastatic cancers. The objective of this study was to qualitatively evaluate the impacts of COVID-19 on metastatic breast cancer (MBC) care among patients. This study consisted of 36 semi-structured qualitative interviews conducted virtually with people living with MBC, who were members of a patient support organization called Project Life. Project Life is an MBC patient-led, web-based wellness community. Responses were analyzed using Phronetic Iterative Analysis. Interviews were conducted from March 14, 2022, to May 31, 2022. Analysis from 36 individual in-depth qualitative interviews revealed the following themes during COVID-19: (1) variable preferences for telehealth (2) disruptions to care, (3) virtualization of social care. Wide variations existed in preferences surrounding telehealth, centered around ideas of convenience. Disruptions to care included delays to diagnostic care, isolation from caregivers, and interruptions associated with COVID-19 infection. These results call for adaptability in oncology care given wide-ranging preferences on telehealth and the shifting of available support services.

How do others cope? Extracting coping strategies for adverse drug events from social media

Patients advise their peers on how to cope with their illness in daily life on online support groups. To date, no efforts have been made to automatically extract recommended coping strategies from online patient discussion groups. We introduce this new task, which poses a number of challenges including complex, long entities, a large long-tailed label space, and cross-document relations. We present an initial ontology for coping strategies as a starting point for future research on coping strategies, and the first end-to-end pipeline for extracting coping strategies for side effects. We also compared two possible computational solutions for this novel and highly challenging task; multi-label classification and named entity recognition (NER) with entity linking (EL). We evaluated our methods on the discussion forum from the Facebook group of the worldwide patient support organization ‘GIST support international’ (GSI); GIST support international donated the data to us. We found that coping strategy extraction is difficult and both methods attain limited performance (measured with F1 score) on held out test sets; multi-label classification outperforms NER+EL (F1=0.220 vs F1=0.155). An inspection of the multi-label classification output revealed that for some of the incorrect predictions, the reference label is close to the predicted label in the ontology (e.g. the predicted label ‘juice’ instead of the more specific reference label ‘grapefruit juice’). Performance increased to F1=0.498 when we evaluated at a coarser level of the ontology. We conclude that our pipeline can be used in a semi-automatic setting, in interaction with domain experts to discover coping strategies for side effects from a patient forum. For example, we found that patients recommend ginger tea for nausea and magnesium and potassium supplements for cramps. This information can be used as input for patient surveys or clinical studies.

OP012: Perceptions of breast and ovarian cancer risk and genetic testing among Non-Hispanic Black women

Non-Hispanic Black (NHB) women experience health disparities from familial and hereditary breast and ovarian cancer (HBOC) compared to other racial and ethnic groups, including 40% higher mortality from breast cancer compared to non-Hispanic White women. One potential factor in these disparities includes lower uptake of HBOC genetic testing. This study explores potential factors for the lower use of HBOC genetic testing in NHB women and their families. Understanding these factors is critical to improving uptake of HBOC testing in the NHB community and improving HBOC racial and ethnic health disparities. A national sample of NHB women with personal or family history of HBOC were recruited through patient support organizations, historically Black colleges and university sororities, professional organizations for women of African descent, and snowball sampling. Participants were interviewed using an interview guide developed by content experts and a community advisory board. Interviews were audio recorded and transcribed verbatim. Interview transcripts were qualitatively analyzed using NVivo12 according to the principles of grounded theory. Sixty-one NHB women with personal (n=37, breast; n=6, ovarian) or family history (n=14, breast; n=2, ovarian; n=2 breast/ovarian) of HBOC participated in a qualitative interview. Participants reported on their own awareness of their family history of HBOC prior to their own diagnosis and how this informed their assessment of their pre-diagnostic risk of HBOC. The impact of family culture and cohesion, including perceptions of a familial ‘culture of silence’ around the sharing of personal or family medical history were also identified as potential barriers to awareness of HBOC risk. Thirty participants with a personal history and seven participants with family history received HBOC genetic testing upon recommendation of their provider or following their own request. Those that declined HBOC genetic testing described misperceptions of HBOC inheritance or expressed a belief that such testing would not be personally beneficial. Participants were also asked to describe family members’ interest in cascade testing and their reasons for accepting or declining HBOC genetic testing. Many participants felt that their daughters would be interested in HBOC genetic testing, but that siblings and other extended family members would decline out of belief that the results would have limited personal utility to themselves and/or their offspring or that a potential positive result would result in distress and life-long worry. Family members’ education status and views on healthcare were also thought to be important factors in their decision. This study is the largest qualitative study of its kind in NHB women with a personal or family history of breast and/or ovarian cancer. These findings suggests that there are significant barriers to HBOC genetic testing in the NHB community, including cultural factors influencing risk perception and the uptake of cascade testing. Culturally sensitive community outreach on the disparate impact of breast and ovarian cancer and how genetic testing may improve NHB cancer outcomes may improve uptake of HBOC genetic testing among at-risk NHB families.

Abstract P4-11-17: Return to work after breast cancer: Disparities among patients treated in public and private hospitals in Brazil

Abstract Background: In North America and Europe return to work (RTW) rates vary among breast cancer(BC) survivors from 24-66% and 53-82% after 06 and 36 months of diagnosis, respectively. In 2017an observational study evaluated return to work among Brazilian patients treated in one publichospital in São Paulo, and described RTW rates of 30.3 and 60.4%, after 12 and 24 months of BCdiagnosis, respectively. The aim of the present study was to evaluate RTW rates among a broaderpopulation of Brazilian patients with BC, including patients treated in private hospitals, and todescribe factors associated with this outcome.Patients and Methods: Patients with BC registered on the portal of the NGO Instituto Oncoguia, oneof the largest Brazilian cancer patient support organization, and patients treated in one of the cancercenters from the Oncoclínicas group in Bahia, Rio de Janeiro or São Paulo. Patients received anemail invitation to participate in this study by answering an online survey. Inclusion criteria:Women with BC, diagnosed with stage I-IV within 12 to 36 months from survey date, age 18-65,with paid work before BC, who answered question related to returning to work after the diagnosis.The Institutional Review Board (IRB) of the Hospital Santo Antônio/Obras Sociais Irmã Dulce, inSalvador- Bahia, approved the study.Results: 124 women fulfilled all inclusion criteria and agreed to participate on this online survey.Most patients were white (71.8%), had college degree or higher education (74.2%) and were fromthe southeast region in Brazil (67.7%). Overall, 70.2% of patients returned to work after BCdiagnosis; 21.8% stayed away from work for &amp;lt; 6 months, 26.6% for 6-12 months, 22.6% for 12-24months, 19.3% for more than 24 months and 9.7% did not answer this question. Most participantswere treated in private hospitals/clinics (82%), reported they liked their job (64.5%) and receivedsupport from employer (56.4%), but only 33.1% indicated had been offered work adjustments aftercancer diagnosis. From the 29.8% that did not RTW, 78.4% declared they wished to return. Only19.3% said that they had no difficulties in returning to work. Most common difficulties to RTWwere difficulty concentrating (34.7%) and adjusting to working hours (19.3%). In the multivariateanalysis, factors associated with positive RTW outcomes included being treated in a private versuspublic hospital (OR: 13.74, CI95% 1.76-106.96; p = 0.012) and job satisfaction (OR: 4,69,CI95% 1.10-19.98; p = 0.036). Factors associated with negative RTW outcomes included &amp;gt; 24. months away from work (OR: 0.02, IC95% 0.01-0.32; p = 0.004) and depression diagnosed afterBC (OR: 0.13, IC95% 0.01-0.91; p = 0.04). A limitation of this study is the use of a conveniencesample, thus, the associations found are limited to the participating women .Conclusion: Differences in RTW rates in private versus public hospitals may explain the betterRTW rate found in this cohort, in contrast with previous study conducted with Brazilian patientstreated in a public hospital in São Paulo. Ultimately, identifying patients who will likely experiencedifficulties to RTW (patients who developed depression after BC and those not satisfied with theirjobs) can hopefully trigger patient support strategies. Organizations and government should betterassist patients in the rehabilitation work process and with possible career transitions. Citation Format: Luciana Landeiro, Luciana Holtzde Camargo Barros, Lycia TramujasVasconcellos Neumann, André Marques Santos, Anna Carolina Arena Siqueira, Rafael Kaliks. Return to work after breast cancer: Disparities among patients treated in public and private hospitals in Brazil [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P4-11-17.

25 - The continued impact of the COVID-19 pandemic on patient advocacy and support organisations in the UK and Ireland: results from the second Global Lung Cancer Coalition (GLCC) survey

25 - The continued impact of the COVID-19 pandemic on patient advocacy and support organisations in the UK and Ireland: results from the second Global Lung Cancer Coalition (GLCC) survey

MA05.03 Considering the Continued Impact of the COVID-19 Pandemic on Patient Advocacy and Support Organisations

Over the last year, COVID-19 has been the primary focus for health systems around the world, impacting the diagnosis, treatment, and care of patients, including lung cancer patients. During this time, patient advocacy and support organisations have played an essential role in offering advice and support to patients. A year after the first lockdowns were announced in most countries, the Global Lung Cancer Coalition (GLCC) surveyed its members to understand how the pandemic has affected organisations and the support they offer to patients, and if experiences have evolved throughout the pandemic.