.
Patients with multiple myeloma (MM), patient advocates, healthcare providers (HCPs), and industry sponsors gathered at 2 MM Health Equity Summits to discuss their experiences and perspectives on MM healthcare inequities in the US. Eight topics relevant to the patient experience were identified at the first summit, prioritized by participant survey, and aligned on by the entire group. Two topics were then selected for priority discussion in the follow-up summit, which led to the insights presented here and actionable steps for US HCPs, policy makers, and other stakeholders. The first topic centered around delivering precise information specific to a patient’s disease journey, emphasizing awareness and understanding. Lack of MM awareness and its symptoms among non-specialist HCPs and patients was identified as the primary cause for delayed diagnoses in patients with generalized symptoms. Participants suggested that enhancing HCP MM trainings and resources may aid timely diagnoses. Furthermore, using diverse communication channels and leveraging support groups and community health workers may improve MM education for patients, caregivers, and other family members and promote self-advocacy. The second topic focused on improving access to optimal care. Participants discussed how geographical, cultural, and financial factors influence access to specialized treatment. Proposed solutions included telehealth, reducing potential HCP biases in referrals, and using patient navigators to aid with insurance obstacles. Participants also discussed ways to improve perceptions of clinical trials. The MM Health Equity Summits allowed patients and patient advocates to discuss experiences and treatment access barriers. Actionable steps were recommended for HCPs and policymakers to improve treatment of disadvantaged patients, redressing historic inequities, and focusing on solutions to expand awareness, understanding, and access to healthcare.
Digital health technologies (DHTs) can quantify changes in physical activity in cachexia clinical studies. But what is a meaningful change? We estimated the meaningfulness to patients with cachexia and cancer of incremental changes in ability to perform physical activities of different intensity and time spent each day doing non-sedentary activity that can be measured with DHTs. An online survey was conducted with US adults with cachexia and cancer. Meaningfulness of 14 changes in ability to perform physical activities and 3 increases in daily time spent in non-sedentary activity were assessed on a 5-point rating scale (not at all meaningful to extremely meaningful). Subgroups (tumor type, cancer stage, ECOG performance status) were compared using chi-square (or Fisher’s exact) tests. Overall, 181 patients participated. All changes in physical activity intensity, and both a 14-min and a 30-min increase in time spent in non-sedentary activity/day, were at least moderately meaningful to most patients, regardless of tumor type, cancer stage, or ECOG performance status (Table). Some meaningfulness ratings differed significantly by tumor type (both walking pace and distance were less meaningful in NSCLC and sitting to standing was less meaningful in pancreatic) and performance status (walking pace was less meaningful in patients with ECOG 3-4). Majorities of patients, except for those with colorectal, rated a 4-min increase/day in non-sedentary activity as at least moderately meaningful. Patients with cancer and cachexia perceived even small changes in physical activities and time spent in non-sedentary activity as being at least moderately meaningful, suggesting that DHTs that measure changes in movement duration can be used to capture important patient-centric endpoints in clinical studies. Table Change in Ability to do Physicial Activities Proportion of Patients Rating Each Change as at Least Moderately Meaningful All Patients Tumor Type Cancer Stage Performance Status NSCLC Breast Colorectal Pancreatic Other Stage I-III Stage IV Higher Lower N=181 N=20 N=69 N=30 N=15 N=47 N=123 N=52 N=147 N=34 Cannot go walking outside to Able to walk a short distance 93.9% 95.0% 94.2% 93.3% 93.3% 93.6% 92.7% 98.1% 93.9% 94.1% Able to walk a short distance to Able to walk a long distance 90.6% 65.0%* 91.3%* 96.7%* 100.0%* 93.6%* 91.9% 88.5% 91.8% 85.3% Cannot walk, even at a slow pace to Able to walk at a slow pace 94.5% 100.0% 95.7% 93.3% 93.3% 91.5% 93.5% 98.1% 95.9% 88.2% Able to walk at a slow pace to Able to walk at an average walking pace 90.6% 70.0%* 92.8%* 93.3%* 100.0%* 91.5%* 89.4% 94.2% 93.2%* 79.4%* Able to walk at an average walking pace to Able to walk at a fast pace 79.6% 70.0% 78.3% 93.3% 93.3% 72.3% 79.7% 78.8% 80.3% 76.5% Cannot be up and about to Able to be up and about for <1 hour a day 93.9% 100.0% 92.8% 93.3% 100.0% 91.5% 94.3% 94.2% 94.6% 91.2% Able to be up and about for <1 hour a day to Able to be up and about 3 hours a day 96.1% 100.0% 94.2% 90.0% 100.0% 100.0% 95.1% 100.0% 95.9% 97.1% Able to be up and about 3 hours a day to Able to be up and about 6 hours a day 92.3% 80.0% 89.9% 93.3% 100.0% 97.9% 90.2% 98.1% 92.5% 91.2% Cannot move from sitting to standing to Able to move from sitting to standing with effort 89.0% 95.0%* 91.3%* 100.0%* 60.0%* 85.1%* 88.6% 92.3% 89.8% 85.3% Able to move from sitting to standing with effort to Move from sitting to standing easily 95.0% 100.0% 94.2% 100.0% 100.0% 89.4% 95.1% 96.2% 95.9% 91.2% Cannot do any activities, even while sitting to Able to do activities while sitting 95.0% 95.0% 92.8% 100.0% 100.0% 93.6% 94.3% 98.1% 95.2% 94.1% Able to do activities while sitting to Able to do light activities 96.1% 100.0% 94.2% 93.3% 100.0% 97.9% 97.6% 94.2% 97.3% 91.2% Able to do light activities to Able to do moderate activities 91.2% 95.0% 87.0% 93.3% 93.3% 93.6% 91.1% 92.3% 92.5% 85.3% Able to do moderate activities to Able to do vigorous activities 75.7% 60.0% 75.4% 80.0% 86.7% 76.6% 78.9% 67.3% 78.2% 64.7% Able to do non-sedentary activities for an additional 4 minutes per day 65.2% 65.0%* 75.0%* 48.1%* 86.7%* 60.9%* 70.0% 62.7% 66.4% 69.7% Able to do non-sedentary activities for an additional 14 minutes per day 76.2% 80.0% 77.9% 66.7% 93.3% 80.4% 79.2% 76.5% 79.0% 75.8% Able to do non-sedentary activities for an additional 30 minutes per day 85.6% 90.0% 89.7% 85.2% 100.0% 82.6% 88.3% 88.2% 88.8% 84.8% * indicates statistically significant differences (P<0.05) in proportion among subgroups Carrie Northcott, Abigail Newell, Soohyun Hwang, Josh Coulter, Lewis Kopenhafer, Mar Santamaria, Isik Karahanoglu, Martine C. Maculaitis, Joseph C. Cappelleri, Kathleen Beusterien, Maria Gonzalo, Erica Fortune, Claire Saxton, Elif Andac-Jones, Brett Hauber. Meaningful change in the ability to perform physical activities for patients with cachexia and cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 2517.
11154 Background: Lung cancer is the second most common cancer and the leading cause of cancer-related deaths. Non-small cell lung cancer (NSCLC), which comprises ~85% of cases, is aggressive, often diagnosed late, and associated with significant symptom burden, and poor health-related quality of life (HRQoL) overall, as well as poor prognosis. However, the factors contributing to variation in HRQoL among NSCLC patients are poorly understood. This study aims to assess the role metastatic status and treatment history play in HRQoL. Methods: We conducted a retrospective analysis of Cancer Support Community’s Cancer Experience Registry (CER) survey data collected between Feb 2015 – Nov 2023. The sample included 279 U.S. adults with NSCLC. HRQoL, specifically physical and psychological symptom burden and function, was assessed using the 7 domains of PROMIS29v2.0: anxiety, depression, pain, fatigue, sleep disturbance, physical function, and social function. Preliminary analyses (not shown here) found that non-metastatic patients were more likely to report higher pain, fatigue, and physical and social impairments compared to metastatic patients. We hypothesized that treatment history could partially explain this outcome: 62% of nonmetastatic patients reported history of surgery vs. 31% of metastatic patients. Thus, an interaction term (metastatic status x surgery) was created for further analysis in backward elimination linear regression models. Results: Participants were 68% women and 88% Non-Hispanic White, with a mean age of 64 (SD=10 years). The mean time since initial diagnosis was 5 years (SD=7). 16% were nonmetastatic with no history of surgery and 27% with a history of surgery; 39% were metastatic with no surgery and 18% with surgery. After adjusting for sociodemographic and clinical variables, treatment history showed associations with HRQoL, though findings were inconsistent in most groups. Those who were nonmetastatic without surgery reported more sleep disturbance (b = 3.58), those with clinical trial history reported less anxiety (b = -3.61), and those with immunotherapy reported less depression (b = -2.55). Metastatic individuals without surgery reported less pain (b = -3.75) and fatigue (b = -3.06) and better physical (b = 3.67) and social functioning (b = 4.19). Metastatic surgery group was not significant for any domains. Conclusions: Results underscore the complex factors that contribute to HRQoL in those with NSCLC. The findings emphasize the importance of a holistic, value-based care approach, considering not just survival but also patients' preferences and quality of life. A full understanding of treatment side effects and their implications for HRQoL is essential to aligning care with patient preferences. Future research should investigate how treatment history impacts HRQoL outcomes.
PURPOSE: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.METHODS: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.RESULTS: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.CONCLUSIONS: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.
