Cancer Support Community Research Articles

Abstract B043: Improving quality of life for Hispanic breast cancer survivors: A culturally tailored education intervention

Abstract Purpose: To evaluate the effectiveness of the Breast Cancer Education Intervention (BCEI) program in increasing knowledge and awareness of survivorship topics among survivor advocates and survivors, and to assess the impact of survivorship care plans on quality of life. Breast cancer survivorship care is crucial for improving the quality of life among survivors. Hispanic/Latino women face greater challenges and disparities in accessing survivorship care due to cultural, socioeconomic, and systemic barriers. The BCEI program, adapted from the National Cancer Institute’s model, aims to address these disparities through culturally tailored survivorship education and support. Methods: The BCEI program was piloted with a group of 8 Hispanic/Latino breast cancer survivors, in collaboration with Cancer Support Community Arizona (CSCAZ). This six-month program, created and delivered in Spanish, consisted of bi- monthly in-person sessions and phone check-ins. The educational sessions featured topics such as emotional and physical changes, lifestyle behaviors, nutrition, exercise, and psychological distress along with the introduction of a personalized survivorship care plan. These sessions provided a sense of community and emotional support with essential knowledge and understanding of the cancer journey, addressing gaps caused by language barriers in clinical settings, and the lack of Spanish language support groups. Survivor advocates underwent specialized training to effectively support the survivor participants. Data for the BCEI program was collected through pre and post survey evaluations, participant check-ins, and qualitative feedback. Survivors were paired with bilingual Patient Navigators, who connected them to resources in the community. Results: Preliminary results show a significant improvement in survivors’ knowledge and satisfaction with survivorship care. Participants demonstrated an increased awareness of the importance of survivorship care plans and showed positive changes in lifestyle behaviors. The results highlighted the program’s cultural tailoring and sense of community as key success factors. Conclusion: The Breast Cancer Education Intervention program demonstrates potential in addressing health disparities in breast cancer survivorship among Hispanic/Latino women. Building on this success, we are expanding the BCEI program to include a second iteration focused on Black and African American breast cancer survivors, who also face similar challenges and disparities. The program will be implemented in collaboration with the Coalition of Blacks Against Breast Cancer (CBBC). Citation Format: Idali Cuellar, Farhia M. Omar. Improving quality of life for Hispanic breast cancer survivors: A culturally tailored education intervention [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B043.

Connected and supported: a scoping review of how online communities provide social support for breast cancer survivors.

To (i) assess how and to what extent online communities are used among breast cancer survivors (BCS) as a source of social support, (ii) describe the kind of support BCS access through online communities, and (iii) explore how these communities foster social support for BCS that promotes well-being and reduces the challenges of survivorship. We conducted a scoping review. A professional librarian performed a comprehensive search in multiple databases from January 2010 to May 2023. The review process adhered to the Johana Briggs Institute's method guidelines and the PRISMA-ScR reporting system. Fifteen studies were included. Participants used social media, cancer support communities, message boards, or websites for information and emotional support. Qualitative findings resulted in four themes: to reassure; to empower; to promote equity, diversity, and inclusion; and to demonstrate for BCS the drawbacks of online support. We underscore that a variety of internet websites and social media platforms are valuable for and appreciated by BCS, especially as a source of social support and human connectedness. Our study raises the existing gap in cultural/ethnic representation in this field and shows that institutional and organizational efforts are needed to address gaps in information regarding access to social support for multiethnic BCS women. This data synthesis will empower the BCS community by sharing how they can strengthen and support their peers and community via their participation in online communities that connect and support cancer survivors in healthcare spaces.

Interdisciplinary provider visits attenuate relationship between patient concerns and distress in older adults with cancer.

This study examined the relationship between multidimensional patient concerns and anxiety and depression in a national sample of older adults with cancer (OACs ≥ 65years) and the buffering effect of visiting providers across disciplines (e.g., oncology, allied health, primary care, mental health) on these relationships. Participants completed a cross-sectional survey through the Cancer Support Community's Cancer Experience Registry (CER), an online community-based research initiative. Eligible participants were 65years and older and diagnosed with cancer in the past five years. Participants completed self-report measures of (1) the severity of their concerns across multiple domains, (2) anxiety and depression, and (3) whether they received care for "symptoms and side effects" from various providers. The sample consisted of 277 OACs; 45% endorsed elevated anxiety and 31% endorsed elevated depression. The most severe concerns were in the domains of body image and healthy lifestyle and symptom burden and impact. More severe concerns were associated with higher levels of anxiety and depression. The relationship between concern severity and distress was weaker in OACs who saw a palliative care, mental health, physical or occupational therapy provider, pharmacist, or primary care provider relative to OACs who did not. A visit with an oncology provider did not moderate most relationships between concerns and distress. The relationship between OACs' concerns and distress was attenuated by treatment with a specialty provider. Interdisciplinary team care may be a vital component of comprehensive patient-centered care for OACs.

Head and neck cancer survivors: Long-term nutrition impact symptoms, eating problems, and barriers to care impact psychosocial health.

12044 Background: Head and neck cancer (HNC) survivors experience significant long-term side effects of their treatment, and health-related quality-of-life (HRQoL) assessments of HNC survivors are still early in development. This survey captured long-term nutrition impact symptoms, eating problems, psychosocial impact, and barriers to accessing health care of HNC survivors. Methods: The Cancer Support Community (CSC) conducted an online survey with participants from CSC, Head and Neck Cancer Alliance, and Support for People with Oral and Head and Neck Cancer (SPOHNC). 172 “long-term survivors” (LTS), at least 2 years past initial diagnosis completed the survey. Most respondents were white (94%) & female (58%). The average age was 64. The most common treatments reported were radiation (93%), surgery (66%), and chemotherapy (59%). Results: Physical and psychosocial issues are prevalent and persistent among LTS. Almost all (99%) LTS reported experiencing eating problems since diagnosis, and 92% had symptoms persist into the last 7 days. Dry mouth (85% ever/68% in last week) and problems swallowing (82%/62%) were most common. Prevalence of side effects was independent of stage of cancer and time since initial diagnosis. 42% of LTS reported still not eating a solid food diet (30% “soft” food; 9% feeding tube; 4% liquid or pureed food). 63% ever used a feeding tube. For those no longer using a feeding tube, 71% used it for ≤6 months. Current users had feeding tubes for a median of 39 months. Weaning from a feeding tube was most likely before 14 months. 62% of LTS reported still feeling self-conscious when eating, 45% feeling embarrassed about their eating habits, 44% having their daily activities affected by eating problems, 37% said they avoid going out in public when it involves eating or drinking. Despite this, 27% reported never seeing a health care professional (HCP) or mental health professional (MHP) to manage their eating problems & psychosocial impact. Only 11% of LTS ever met with MHPs to address their distress. Female LTS of younger age and those with Medicare insurance were more likely to meet with HCPs (except dentists for Medicare recipients) and MHPs. Financial, transportation, & logistical concerns were top barriers to receiving care. 19% reported cost of care as a moderate to great barrier to cancer treatment. LTS reported difficulty paying for dental work (29%), supplemental nutrition drinks (11%), and other products to manage eating problems (9%). Conclusions: Although HNC’S are generally considered “curable,” the nature of the disease and the required aggressive treatment regimens leave LTS with a broad range of common physical and psychosocial issues that are rarely addressed. Survey data highlight almost universal, long-term persistence of eating and nutrition problems which cause significant psychosocial impact over LTS’s lifetime.

Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry.

Individuals with metastatic cancer experience many medical, physical, and emotional challenges due to changing medical regimens, oscillating disease states, and side effects. The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables. This study utilized data from the Cancer Support Community's Cancer Experience Registry. Individuals were included if they self-reported a solid tumor metastatic cancer and completed CancerSupportSource, which evaluates five domains of concerns (emotional well-being, symptom burden, body image/healthy lifestyle, healthcare team communication, and relationships/intimacy). Multivariable linear regression examined associations between independent predictors of each survivorship concern domain. Of the 403 included participants, individuals reported a metastatic diagnosis of breast (43%), colorectal (20%), prostate (7%), lung (7%), gynecologic cancer (6%) and other. Nearly all (96%) reported at least one survivorship concern, with the most prevalent concern about cancer progression or recurrence. Survivorship concerns were higher across multiple domains for individuals unemployed due to disability. Individuals who were less than five years since diagnosis reported higher concerns related to emotional well-being, symptom burden, and healthcare communication compared to those more than five years since diagnosis. Individuals with metastatic cancer experience a variety of moderate-to-severe survivorship concerns that warrant additional investigation. As the population of individuals with metastatic cancer lives longer, future research must investigate solutions to address modifiable factors associated with survivorship concerns, such as unemployment due to disability.

"Living with Loss": A qualitative exploration of existential fears among people with advanced lung cancer in online lung cancer support groups.

With targeted therapies, people are surviving longer with advanced lung cancer and engaging in online lung cancer support communities. While these groups provide a sense of community, witnessing the death of peers can lead to emotional distress. This qualitative study aims to (1) explore the experience of witnessing death in online cancer support groups; (2) identify factors that contribute to the emotional struggles of witnessing the death of peers; and (3) identify strategies/options for dealing with losses in the cancer community. We conducted a cross-sectional analysis of qualitative interviews exploring existential concerns with participants (n = 25) from oncogene-specific online lung cancer support groups. The principal investigator conducted study interviews between August 2018 and March 2019 where participants were asked about their cancer experiences and existential concerns. We used thematic analysis and NVIVO 11 software to examine and store the de-identified interview data. Participants indicated that they had often witnessed their peers die and felt the pain of the loss. Factors that played a part in their struggle with witnessing others' death included the closeness of the relationship with the person, the age of the person who died, seeing oneself in the experience of the other dying, disparities in care, and losing touch in the final stages. Participants used varied coping strategies such as celebrating the life of the individual who died, engaging in advocacy efforts, not focusing on the loss, participating in therapy, and bringing self-preserving thoughts. Our study highlights the importance of addressing existential fears in online lung cancer support groups and incorporating conversations about death in spaces that deal with cancer.

Financial toxicity among people with metastatic cancer: findings from the Cancer Experience Registry.

This study describes financial toxicity (FT) reported by people with metastatic cancer, characteristics associated with FT, and associations between FT and compensatory strategies to offset costs. Cancer Support Community's Cancer Experience Registry data was used to identify respondents with a solid tumor metastatic cancer who completed the Functional Assessment of Chronic Illness Therapy COmprehensive Score for Financial Toxicity (FACIT-COST) measure. Multivariable logistic regression analyses examined associations between respondent characteristics and FT, and FT and postponing medical visits, nonadherence to medications, and postponing supportive and/or psychosocial care. 484 individuals were included in the analysis; the most common cancers included metastatic breast (31%), lung (13%), gynecologic (10%), and colorectal (9%). Approximately half of participants (50.2%) reported some degree of FT. Those who were non-Hispanic White, Hispanic, or multiple races (compared to non-Hispanic Black), and who reported lower income, less education, and being less than one year since their cancer diagnosis had greater odds of reporting FT. Individuals with any level of FT were also more likely to report postponing medical visits (Adjusted Odds Ratio [OR] 2.58; 95% Confidence Interval [CI] 1.45-4.58), suboptimal medication adherence (Adjusted OR 5.05; 95% CI 2.77-9.20) and postponing supportive care and/or psychosocial support services (Adjusted OR 4.16; 95% CI 2.53-6.85) compared to those without FT. With increases in the number of people living longer with metastatic cancer and the rising costs of therapy, there will continue to be a need to systematically screen and intervene to prevent and mitigate FT for these survivors.

A summit on amplifying voices of patients, caregivers, and people with disabilities in Inflation Reduction Act drug price negotiations.

On September 18, 2023, Cancer Support Community convened patient and caregiver advocates, health care providers, policy experts, and health care innovators and thought leaders for a roundtable discussion on the need to ensure that patients, people with disabilities, and caregivers have a voice in defining "clinical benefit" for the purpose of Medicare Part D drug price negotiations and future health care policies that impact patients. The meeting featured presentations from Lara Strawbridge, Deputy Director for Policy at the Medicare Drug Rebate and Negotiations Group in the Center for Medicare, regulatory expert, Dr Monique Nolan, Counsel at Arnold and Porter, LLP, and 3 panel discussions: IRA Implementation-What Matters to Patients, a discussion of policies expected to impact patients and caregivers who are likely to rely heavily on high-cost drugs or biologics to treat cancer or other chronic illnesses, as well as the future development of novel therapies; The Science of Measuring Patient Experience, a discussion of current science of measuring patient experience and how it should be incorporated into the definition of clinical benefit; and Developing an Infrastructure for External Feedback, a discussion of actions and goals for patient engagement, advocacy opportunities, and how to best coordinate such efforts. This article represents an analysis of relevant resources as well as highlights from these sessions and subsequent discussions. It also outlines principles for engaging patient and provider advocacy organizations, whether in policy, media, or online discussions, surrounding the implementation of the Medicare Drug Price Negotiation Program.

Real-World Patient Experience With Pancreatic Enzyme Replacement Therapy in the Treatment of Exocrine Pancreatic Insufficiency.

This study aimed to provide patients insights on the management of exocrine pancreatic insufficiency (EPI) with pancreatic enzyme replacement therapy (PERT). A survey of 75 members of Inspire's Pancreatitis or Pancreatic Cancer Support communities was conducted. Eligibility included having EPI secondary to chronic pancreatitis, pancreatic cancer, pancreatic surgery, or acute pancreatitis, and current/past PERT experience. Patients were 73% female, 57% aged 50 to 69 years, and 85% White, with PERT prescribed by a gastroenterologist/pancreatologist for 64%. Only approximately half of respondents agreed that their healthcare provider provided detailed information about EPI (54%) or how PERT works to treat EPI (56%). Most respondents (83%) reported searching for information about EPI, 56% were taking PERT solely before or after eating, 36% reported taking suboptimal PERT doses, and 39% reported no follow-up. In addition, 24% decreased their PERT dosage without consulting their physician, and 21% reported purposely skipping PERT. This study reveals potential barriers to effective treatment of EPI with PERT, including lack of patient education, mainly how and when to take PERT, gaps in appropriate dosing, and lack of patient follow-up. Continued focus on patient and provider education is essential to address these gaps and optimize the treatment of EPI.

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 >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.

Measuring Social Toxicity in Acute Myeloid Leukemia

Background: AML is an aggressive and costly cancer to treat, which often results in lower quality of life, including worse and more frequent depression and anxiety, physical strains, and financial toxicity. AML can also have a considerable impact on social well-being, including personal and work domains. While individual social impacts of cancer are often considered, we propose that social toxicity is a unique construct-much like financial toxicity-that should be measured as such. This study aims to (1) determine the feasibility of creating a composite measure of social toxicity and (2) examine the prevalence of social toxicity in AML patients and survivors and its relationship to other patient reported outcomes. Methods: 109 AML patients and survivors enrolled in the Cancer Support Community's online survey, the Cancer Experience Registry, between Jan-Mar 2023 and completed at least 50% of items pertinent to social toxicity. First, six indices were coded (1=Yes; 0=No) based on negative social impact: PROMIS Social Function T-score (1=<40); three items from CancerSupportSource including changes to work, school, or home life, problems in your relationship with your spouse/partner, and feeling lonely or isolated (1=moderately to very seriously concerned); employment (1=unemployed due to disability/other), and medication interfering with daily life (1=agree or strongly agree). Then, a social toxicity composite score was calculated by summing the number of indicators present (possible range = 0-6; higher scores = more social toxicity). Lastly, we investigated the relationship between social toxicity and patient reported outcomes, including anxiety and depression (PROMIS-29 4-item T-scores) and financial toxicity (11-item FACIT-COST). Results: Among the sample, 63(58%) were women and 91(84%) were Non-Hispanic White, with a mean(SD) age of 63.6(13.3) years (range: 29-86). Median time since diagnosis was 2 years; 57(52%) participants reported that they were currently receiving treatment. The most frequently endorsed indicator of social toxicity was changes in work, school, or home life (46%), followed by PROMIS social function (28%), employment status (27%), feeling lonely or isolated (23%), relationship problems with spouse/partner (17%), and medication interference (6%). Individual indices moderately correlated with financial toxicity, anxiety, and depression (average rs=-.36, .39, and .45, respectively). The largest percentage of the sample (39%) had a social toxicity composite score of 0 (M=1.5; SD=1.5), with the remaining score distribution as follows:1(18%), 2(17%), 3(13%), 4(10%), 5(2%), 6(<1%). PROMIS anxiety (M=54.2; SD=10.8) and depression (M=50.8; SD=9.6) significantly correlated (p<.001) with social toxicity (r=.62 and .71, respectively), such that great social toxicity was related to greater anxiety and depression symptom burden. Social toxicity was also correlated with FACIT-COST (M=21.6; SD=13.0; r=-.60), such that greater social toxicity was related to worse financial well-being. Between groups analysis reveals more social toxicity among those aged 18-64 (n=46; M=1.8; SD=1.7) vs. those aged 65+ (n=63; M=1.2; SD=1.4; t=1.975, p<.05) as well as those who are currently receiving treatment (n=57; M=1.6; SD=1.4) vs. not (n=48; M=1.2; SD=1.7; t=1.311, p<.10). Conclusions: The current findings suggest that social toxicity-negative social impact due to cancer diagnosis or treatment-can be assessed using a composite score of indices that reflect individuals' social activity and well-being across multiple life domains. While 39% of the sample reported no social toxicity, 69% had at least one of the selected indices, with the most frequent being changes in work, school, or home life. Social toxicity was significantly related to other patient reported outcomes with a larger magnitude correlation than that observed for individual indices, including anxiety, depression, and financial toxicity, thus indicating its potential importance in the larger cancer landscape, especially for those younger than 65 and those currently receiving treatment. Social toxicity is particularly important to investigate for patients dealing with aggressive and costly cancers, such as AML, and methods of measurement for assessing social toxicity should continue to be explored in additional clinical populations to better align individuals with tailored support resources.

Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer

The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Perspectives on therapeutic alliance. Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population.

The interplay of financial toxicity, health care team communication, and psychosocial well-being among rural cancer patients and survivors.

Financial toxicity contributes to psychosocial distress among cancer patients and survivors. Yet, contextual factors unique to rural settings affect patient experiences, and a deeper understanding is needed of the interplay between financial toxicity and health care team communication and its association with psychosocial well-being among rural oncology patients. We examined associations between financial toxicity and psychosocial well-being among rural cancer patients, exploring variability in these linkages by health care team communication. Using data from 273 rural cancer patients who participated in Cancer Support Community's Cancer Experience Registry, we estimated multivariable regression models predicting depression, anxiety, and social function by financial toxicity, health care team communication, and the interplay between them. We demonstrate robust associations between financial toxicity and psychosocial outcomes among our sample of rural cancer patients and survivors. As financial toxicity increased, symptoms of depression and anxiety increased. Further, financial toxicity was linked with decreasing social function. Having health care team conversations about treatment costs and distress-related care reduced the negative impact of financial toxicity on depressive symptoms and social function, respectively, in rural cancer patients at greatest risk for financial burden. Financial toxicity and psychosocial well-being are strongly linked, and these associations were confirmed in a rural sample. A theorized buffer to the detrimental impacts of financial toxicity-health care team communication-played a role in moderating these associations. Our findings suggest that health care providers in rural oncology settings may benefit from tools and resources to bolster communication with patients about costs, financial distress, and coordination of care.

The impact of COVID-19 on a stand-alone cancer support community.

e24203 Background: The COVID-19 pandemic altered cancer care delivery, notably through a rise in telemedicine. Patients of racial minority, low income, or older age are less likely to engage in virtual platforms. Support services are effective ways to combat negative effects of both a cancer diagnosis and a pandemic. However, research is limited regarding the impact of COVID-19 on support-based organizations. We aimed to identify variations in participant demographics and resource utilization at The Gathering Place (TGP), a cancer support community, prior to and during the COVID-19 pandemic, as the platform of program delivery shifted from all in person (IP), to virtual (V), to a hybrid (H) in person/virtual setting. Methods: Deidentified, retrospective data was gathered from three distinct six month time periods: 01/01-06/30/2019 (IP), 01/01-06/30/2021 (V) and 01/01-06/30/2022 (H). Participant data including participant type (diagnosed with cancer or affected by cancer), age, sex, race, residential zip code (translated to projected household income), cancer type and programs utilized were collected and analyzed. Baseline demographics were compared among IP, V and H platforms using the Wilcoxon test (for age) and chi-square tests for other variables. Statistical significance was set at two-sided P values < 0.05. Results: Among participants with cancer, there was a greater percentage of females and racially white vs. black individuals. Sex, race and projected income did not change significantly over time. However, age significantly decreased from IP to V/H settings. The percentage of participants engaging in support, exercise, art and mind/body programs significantly decreased from IP to V/H settings, whereas educational engagement increased. Similar results were recognized among participants affected by cancer. Conclusions: The change in median age at TGP as a result of the COVID-19 pandemic, and subsequent shift in program delivery, mirrors the disparity in telemedicine utilization among the older population. While race and projected median household income did not change over time, the 2019 data suggests that participation is already highly skewed towards white and higher income participants compared to the local demographic distribution. Moving from IP to V/H delivery, program utilization with more interpersonal camaraderie and social bonding decreased, while programs involving less of these qualities remained the same or increased over time. This data highlights important gaps in utilization and underscores the gravity of in person interaction that has been altered by the COVID-19 pandemic. [Table: see text]

Abstract P5-07-10: Symptom and Functional Status for Individuals with Triple Negative Breast Cancer and Palliative Care Utilization: Findings from the Cancer Experience Registry

Abstract Background: Triple negative breast cancer (TNBC) can spread quickly and has a higher rate of recurrence than other breast cancers. Due to TNBC’s aggressive nature and treatment, patients can experience adverse symptoms and side effects. Palliative care (PC) is intended to improve health-related quality of life (HRQOL) for patients with serious disease at any stage of their illness. However, PC is often conflated with end-of-life care which can affect its rates of utilization. The goals of this study were to explore how TNBC patients characterize their HRQOL by time since diagnosis and describe the rate of utilization in the past year of PC providers for symptom and side effect management. Methods: Data was collected through Cancer Support Community’s Cancer Experience Registry® (CER). From Jan 2015 to Aug 2021, 209 individuals with TNBC enrolled in the CER and completed the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29 v2.0) profile measure. Five domains assess symptoms with higher scores corresponding to worse symptomology (depression, anxiety, pain interference, fatigue, and sleep disturbance) and two domains assess function with lower scores corresponding to worse functioning (physical and social). Scale scores were converted to standardized T scores and compared against the U.S. population (M=50, SD=10) and reference values for newly diagnosed patients with all types of breast cancer. We considered a group score difference of 3 points clinically meaningful. Moderate to severe impairments are reported as percentages of the sample that have PROMIS scores >1SD from M=50. Of the 209 TNBC patients, 66 (32%) participated after Nov 2018 and answered newer survey items about utilization of PC providers in the past year. Results: Participants were mainly Non-Hispanic White (81%); resided in suburban/urban areas (84%); reported household income >$40K (64%); Mean age=53y (SD=10; range 28-77). Median time since diagnosis was 2y. 25% reported advanced or metastatic disease; 41% were currently receiving treatment. TNBC patients reported elevated symptoms and deficits in functioning relative to the U.S. population (score difference>3) for all PROMIS subscales except depression (M=51.9) and social function (M=48.8). Fatigue and anxiety scores were highest (M=55.3 and M=56.2, respectively) exceeding the threshold for mild severity. About one-third of participants reported moderate to severe levels of symptom impairment for fatigue (36%), anxiety (36%), and pain interference (32%). Newly diagnosed participants reported higher levels of symptom severity and functional deficits which improved over time; however, survivors’ PROMIS scores remained worse than the U.S population for fatigue and anxiety. Compared to reference values for breast cancer patients, newly diagnosed (< 2y) TNBC participants (n=83) reported elevated symptoms for fatigue, anxiety, and depression and worse social function (score differences, 4.0, 9.1, 5.3, and 3.9, respectively). In the past year, 69% saw an oncology provider for symptom and side effect support, 44% saw a primary care provider, and 9% a PC provider. Some participants sought care for symptom and side effect management from allied and psychosocial providers such as pharmacists (28%), counselors (25%), and physical therapists (24%). Conclusions: Among TNBC patients, we observed higher levels, on average, of fatigue, anxiety, and depression, and lower social function compared to reference values for breast cancer patients and the U.S. population. Symptom severity and functional deficits were highest among individuals newly diagnosed with TNBC suggesting the importance of incorporating PC into cancer care early in the disease course. TNBC patients and survivors most frequently rely on primary care and oncology care teams for management of symptoms. Future research should examine access barriers to PC providers. Citation Format: Madyson L. Popalis, Heather Badt, Kara Doughtie, Caroline Lawrence, Melissa F. Miller. Symptom and Functional Status for Individuals with Triple Negative Breast Cancer and Palliative Care Utilization: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-07-10.

Abstract P4-05-01: Cancer-Related Distress and Unmet Needs Among Triple Negative Breast Cancer Patients: Findings from the Cancer Experience Registry

Abstract Background: Cancer patients and survivors experience distress related to physical, psychological, social and financial concerns. Individuals diagnosed with triple negative breast cancer (TNBC) may be at increased risk of distress due to the aggressive nature of the illness and high rates of recurrence. The aim of the present study was to describe how TNBC patients characterize cancer-related distress and concerns and identify factors associated with distress. Methods: Cancer Support Community’s Cancer Experience Registry® (CER) is an online research initiative examining the physical, emotional, practical, and financial impact of cancer. The CER measures cancer-related distress using CancerSupportSource™ (CSS), a 25-item validated distress screening tool in which participants rate their level of concern (0=Not at all; 4=Very seriously) across five key domains: (1) emotional well-being (EWB; 8 items, α=.91); (2) symptom burden and impact (SYM; 8 items, α=.90); (3) body image and healthy lifestyle (BHL; 4 items, α=.80); (4) healthcare team communication (HCC; 2 items, α=.74); (5) relationships and intimacy (REL; 2 items, α=.71). CSS subscale scores were calculated as the average item rating. For item analysis, the proportion indicating moderate to very serious concern was reported. From January 2015 to August 2021, a total of 195 US residents with a history of TNBC took part in the CER and completed CSS. Multiple linear regression analysis was used to estimate the relationships between CSS subscales and socio-demographic variables (age, low-income status, employment status) and clinical history (time since diagnosis, advanced or metastatic disease, and currently receiving treatment). Results: The sample was 82% Non-Hispanic White, 7% Non-Hispanic Black, 5% Hispanic, and 7% Non-Hispanic other/multiracial. 17% reported annual household income <$40K. 44% was employed full-time, 12% part-time, 18% retired, and 24% unemployed due to disability or other reason. Mean age was 53 (SD=10) years; 11% were < 40 years. 14% of participants were < 1 year of cancer diagnosis, 27% 1 to < 2 years, 34% 2 to < 5 years, and 25% ≥5 years. 41% were currently receiving treatment, and 27% were diagnosed with advanced or metastatic disease. The mean distress subscale score was highest for concerns about BHL (1.61), followed by EWB (1.29), SYM (1.27), REL (1.04), and HCC (0.83). With regard to concerns about BHL, over half were moderately to very seriously concerned with eating and nutrition (55%) and exercise (55%). Regarding EWB, the items of greatest distress were worrying about the future (53%) and worrying about family (39%). For SYM, over half (53%) were concerned about thinking clearly, and 49% were concerned about fatigue. Participants reported moderate to very serious concern about intimacy, sexual function, and/or fertility (36%) and relationships (22%). Regarding HCC, 24% reported concern related to treatment decisions, while 22% reported concern about communicating with their doctor. In multivariate analysis, time since diagnosis was inversely associated with concerns about EWB (B=-0.03, p=.030), such that distress was higher closer to diagnosis. TNBC patients with advanced or metastatic disease status had significantly higher distress related to SYM (B=0.40, p=.009) and HCC (B=0.61, p=.001). Younger age was associated with concerns about BHL (B=-0.02, p=.011) and REL (B=-0.02, p=.006). Finally, unemployment was associated with higher distress related to EWB (B=0.57, p=.001), SYM (B=0.63, p<.001), BHL (B=0.42, p=0.03), and REL (B=0.70, p<.001). Conclusions: In this sample, average levels indicated slight distress across multiple domains. Many TNBC patients reported concerns that were physical and future-oriented, highlighting critical areas of unmet need. Factors of less time since cancer diagnosis, advanced/metastatic disease, younger age, and unemployment were predictors of higher levels of distress. Citation Format: Caroline Lawrence, Erica E. Fortune, Heather Badt, Kara Doughtie, Madyson L. Popalis, Melissa F. Miller. Cancer-Related Distress and Unmet Needs Among Triple Negative Breast Cancer Patients: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-05-01.

Abstract P6-05-29: Experience of Financial Toxicity and Distress Among Individuals Diagnosed with Triple Negative Breast Cancer: Findings from the Cancer Experience Registry

Abstract Background: Financial toxicity associated with cancer and its treatment can negatively impact treatment adherence and quality of life. Individuals with triple negative breast cancer (TNBC) may be at increased risk for financial toxicity due to the aggressive nature of the disease and high rate of recurrence. The objective of this study was to characterize financial experiences of TNBC survivors, their descriptions of communication with providers concerning treatment costs, and correlations between financial toxicity and psychosocial distress. Methods: From July 2017 to August 2021, 94 individuals with TNBC took part in Cancer Support Community’s Cancer Experience Registry® (CER). Participants completed items related to financial distress, including COmprehensive Score for Financial Toxicity (COST), an 11-item (0=Not at all, 4=Very much) measure of financial well-being (range 0-44; lower scores indicate worse financial well-being), dichotomous (yes or no) items assessing patient-provider communication, and Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29 v2.0). Bivariate relations were assessed using Pearson’s correlation. Results: Participants were 81% non-Hispanic White, 6% Black, and 6% Hispanic. Mean age was 52 years (SD=11.3); 14 (15%) reported household income <$40K. Median time since diagnosis was 2 years; 15% (n=14) reported metastatic breast cancer and 36% were currently receiving treatment. Concerning out-of-pocket cancer-related costs, 56% of our sample reported spending >$250 per month; 32% >$500; 13% >$1000. To reduce costs, 23% sometimes, often, or always postponed seeking psychological support, 19% delayed follow-up on recommendations, 6% postponed doctor’s appointments, and 5% skipped medication. The mean COST score was 23.0 (SD=12.3), indicating mild financial distress overall. Less than half of the sample (46%) indicated no financial toxicity (scores >25), 29% mild financial toxicity (scores 14-25), 22% moderate (score 1-13), and 3% severe (score of 0). The frequency of individual COST items showed 61% reported (somewhat, quite a bit, or very much) worry about future financial problems due to treatment costs; 14% were unable to meet monthly expenses; 49% reported concern about keeping their job or income; 47% reported frustration that they could not work or contribute as usual. COST scores were inversely correlated to PROMIS anxiety (r=-.45, p<.001), depression (r=-.44, p<.001), and sleep disturbance subscales (r=-.48, p<.001), such that lower financial well-being related to more symptomology. COST scores were positively associated with the social function subscale (r=.46, p<.001), so that better financial well-being related to higher social functioning. Regarding patient-provider communication, 70% reported their health care team did not discuss costs, 62% did not discuss impact of TNBC and treatment on work, and 59% did not discuss financial concerns. One-third (34%) wished they received more financial advice and assistance. Conclusion: In this sample of TNBC patients, average levels of financial toxicity were in the mild range. However, many reported moderate to severe toxicity (25%). Greater financial toxicity related to increased symptoms of anxiety, depression, sleep disturbance, and worse social functioning. Despite this, results indicate there is little patient-provider discussion about financial burden, with more than half of our sample reporting their health care team did not discuss costs, impact on work, or financial distress. One-third of participants indicated desire for more financial advice and assistance highlighting an opportunity to better serve TNBC patients, who may be at an increased risk of financial toxicity. Citation Format: Kara Doughtie, Erica E. Fortune, Heather Badt, Caroline Lawrence, Madyson L. Popalis, Melissa F. Miller. Experience of Financial Toxicity and Distress Among Individuals Diagnosed with Triple Negative Breast Cancer: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-29.

Cancer care beyond the clinic: An analysis of participation at The Gathering Place, a stand-alone cancer support community.

214 Background: A wealth of published data exists highlighting the benefits of alternative and supportive therapies when used in combination with traditional medical approaches for individuals diagnosed with cancer. Many physical and emotional symptoms, along with quality of life, can be improved through exercise, artistic expression, mind-body practices and support group participation. While many of these services are offered through healthcare systems or large national foundations, fewer community-run organizations exist. The Gather Place (TGP) uniquely serves the Greater Cleveland area at two stand-alone locations. A wide variety of programs and services are offered, free-of-charge, to those affected by cancer. Since spring of 2020, most services have been provided virtually due to the COVID-19 pandemic. While few studies have evaluated predictors of support group utilization, there is limited data on the demographics of participants at individual support communities. Methods: De-identified, retrospective data was gathered from 04/01/2021 to 03/31/2022. Participant data including age, gender, ethnicity, residential zip code, cancer type, treatment center, date of first attendance, programs attended, and frequency of program attendance were collected and analyzed. Results: 1,494 participants with cancer utilized services at TGP with varying rates of unknown data among each category. Educational opportunities, support groups and one-on-one emotional support sessions were most frequently attended. Female involvement was greater than males (83.9% v. 15.7%), with higher participation among Caucasians compared to African Americans (79.5% v. 16.2%). 67.1% of participants resided in zip codes above the median household income of Cuyahoga County. Participants with breast and gynecologic cancers made up the majority (44.3% & 10.1%), while those with cutaneous, head/neck and hepatobiliary malignancies comprised the smallest distribution (1.6%, 1.7% & 1.8%). Conclusions: TGP is a unique organization unaffiliated with a major healthcare system providing nutrition, fitness, healing arts, education and individual/group support programs. Despite a high incidence of prostate and lung cancer diagnoses in Northeast Ohio, participants with these malignancies were a small percentage of total attendees, differing from the high disease incidence and program participation seen in patients with breast cancer. As information was gathered solely during the COVID-19 pandemic when program delivery shifted to the virtual setting, racial or income disparities reported here may reflect similar disparities seen in tele-health during the pandemic. The gaps in utilization we identified highlight opportunities for targeted areas of improved education and referral.

Current Unmet Needs in Penile Cancer: The Way Forward?

In collaboration with the world's largest online penile cancer support group, the authors created a simple, anonymous survey to highlight and discuss some of the current problems experienced globally by men who have been diagnosed and treated for penile cancer over the last 5-10 years. The world's largest online penile cancer support community group, https://www.facebook.com/groups/penilemelanoma/, was used. There are several problematic areas in providing psychological and peer support for patients with penile cancer, which could be improved by a collaborative approach from health care professionals and third-sector organizations. A patient-led insight into some of the current unmet needs of men treated for penile cancer for clinical practice.

Understanding barriers and facilitators to clinical trial participation among Black patients with multiple myeloma.

12137 Background: Currently, Black patients make up 20% of people living with multiple myeloma, yet they represent only 6% of participants in clinical trials.1 The underrepresentation of Black patients in clinical trials can contribute to outcome disparities thereby negatively impacting health equity in cancer treatment and outcomes.2 This project examined attitudes towards clinical trials among Black multiple myeloma patients and caregivers. Findings will inform the development of programs aimed at increasing clinical trial participation in this population. Methods: In 2021, the Cancer Support Community conducted an online survey to gain insights on barriers, facilitators, and perceptions of clinical trials among Black multiple myeloma patients and caregivers/care partners. Survey questions were informed by insights from prior focus groups. 94 patients and 101 caregivers were surveyed. Results: Most participants were male (62%) and African American (90%). 5% identified as African Caribbean and 5% as Black and Hispanic. The average age was 46 years. Just over half (51%) currently or previously participated in clinical trials. Of those who chose not to participate in a trial, the most common reasons were fear of side effects (46%) and fear of receiving a placebo (38%). Another barrier to participation reported was discomfort with being randomly assigned to a treatment (56%). Participants reported a significant level of distrust in medical research and doctors, saying that it was “very or somewhat likely” that doctors provide treatment as part of an experiment without patient consent (41%) and that they might be used as a “guinea pig” (25%). Of note, 57% of respondents said COVID had changed their attitude towards participating in clinical trials. 14 of 16 factors mentioned in our focus groups were affirmed by more than half of respondents as facilitating participation in a clinical trial. The top factors were: Understanding potential side effects (66%) My health care team speaks to me about trials (65%) Compensation offered for transportation, childcare, or time off work (62%) My family/community support my decision (61%). Conclusions: These findings are consistent with previous research which found that cancer patients reported the biggest attitudinal barriers to clinical trial participation were fear of side effects, distrust in medical research, and random assignment to clinical trial groups.3 Our study highlights that Blacks and African Americans living with multiple myeloma value multifactorial efforts to increase clinical trial participation: logistical and financial interventions, patient/provider communication, and culturally sensitive support and education programs. These programs can also work to improve health equity by reducing barriers to overall care and encouraging Blacks and African Americans living with multiple myeloma to be active members of their health care team.