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  • 1
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 38, No. 15_suppl ( 2020-05-20), p. e19400-e19400
    Abstract: e19400 Background: The impact of ovarian cancer (OC) is wide-reaching; this study explored cancer-related financial burden related to cost of care in people ever diagnosed with OC. Methods: 64 OC patients enrolled in Cancer Support Community’s Cancer Experience Registry. Participants provided demographic and clinical history, and completed 1) CancerSupportSource, a validated 25-item tool with anxiety and depression risk subscales, and 2) the 11-item COmprehensive Score for financial Toxicity (COST). Descriptive statistics were calculated for responses; Pearson/Spearman correlations and one-way ANOVA (Tukey post-hoc) were used to explore bivariate associations between financial burden, depression/anxiety risk, and demographic/clinical variables. Results: Participants were 91% non-Hispanic White, mean age = 57 years, SD= 15. 55% were currently receiving treatment (47% chemotherapy); 33% ever experienced metastatic disease. 22% reported annual income of ≤$40,000; 19% were not-employed due to disability. 13% spent $500+/month on out-of-pocket costs; 63% reported that a health care team member did not discuss cost of care with them. 36% did not know if they had enough assets to cover cancer treatment costs; 1 in 10 (11%) reported they could not meet monthly expenses. 1 in 3 reported (“quite a bit” to “very much”) worry about future financial problems resulting from illness/treatment (39%) and frustration that they cannot work or contribute as much as usual (34%). Greater financial burden was associated with lower income ( r= -.40, p= .001), greater out-of-pocket costs ( r= .24, p= .03), and not working due to disability F(5,58) = 3.84, p= .01. Among respondents, 38% were at risk for clinical depression; 44% for anxiety; greater financial burden was related to depression risk ( r = .51, p 〈 .001) and anxiety risk ( r= .32, p= .012). Conclusions: Financial burden affects many people with ovarian cancer and is associated with poorer psychosocial outcomes. Ovarian cancer patients and survivors can benefit from access to comprehensive supportive care resources, including financial counseling. Cancer Support Community offers resources that may help, including a toll-free Helpline with a dedicated financial counselor. Future work will examine multivariate predictors of financial burden in ovarian cancer. Clinical trial information: NCT02333604 .
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2020
    detail.hit.zdb_id: 2005181-5
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  • 2
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2019
    In:  Journal of Clinical Oncology Vol. 37, No. 15_suppl ( 2019-05-20), p. e23136-e23136
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 37, No. 15_suppl ( 2019-05-20), p. e23136-e23136
    Abstract: e23136 Background: Lung cancer (LC) patients can face long-term symptom burden, quality of life concerns, and enduring distress. This study explored predictors of psychosocial distress among a community-based sample of LC survivors. Methods: 208 individuals with LC enrolled in Cancer Support Community’s Cancer Experience Registry, provided demographic/clinical background, and reported cancer-related distress using CancerSupportSource, a 25-item tool measuring level of concern ( 0-4) over 5 domains: emotional well-being (including 2-item depression and 2-item anxiety risk screening subscales), symptom burden and impact, body image and healthy lifestyle, health care team communication (HCTC), and relationships and intimacy. Using logistic regression, we estimate which domains influence anxiety and depression risk, controlling for significant demographic/clinical variables. Results: Participants were 68% female, 83% non-Hispanic White; mean ( SD) age = 61 (11) years; mean ( SD) years since diagnosis = 3.1 (4.5); 86% non-small cell lung cancer (NSCLC); 43% ever diagnosed as metastatic. 52% underwent surgery; 76% received chemotherapy, 65% radiation. 53% were at risk for clinically significant anxiety; 42% for clinically significant depression. Concerns about relationships and intimacy were associated with greater odds of anxiety risk ( OR= 1.70; p 〈 .01); a positive interaction suggested that anxiety risk among individuals with NSCLC varied by HCTC concerns, with greater concerns being associated with higher risk ( p 〈 .05). Concerns about symptom burden and impact ( OR= 1.21; p 〈 .01) and HCTC ( OR= 1.57; p 〈 .05) were significantly associated with greater odds of depression risk; these associations did not vary by LC type. Conclusions: Concerns around health care team communication, relationships and intimacy, and symptom burden and impact are important considerations in understanding risk for anxiety and depression among lung cancer patients and survivors. Additionally, type of lung cancer (NSCLC) can moderate the degree to which concerns about HCTC are associated with risk. Findings highlight the need for constructive patient-provider communication, particularly around relationships and intimacy and symptom burden. Clinical trial information: NCT02333604.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2019
    detail.hit.zdb_id: 2005181-5
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  • 3
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 15_suppl ( 2018-05-20), p. e22131-e22131
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 15_suppl ( 2018-05-20), p. e22131-e22131
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 4
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 6_suppl ( 2018-02-20), p. 42-42
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 6_suppl ( 2018-02-20), p. 42-42
    Abstract: 42 Background: Recruitment into cancer clinical trials (CCTs) remains challenging despite efforts to enhance patient understanding of and access to CCTs. We examined perceptions of CCTs among prostate cancer (PC) survivors. Methods: 86 PC survivors enrolled in Cancer Support Community’s Cancer Experience Registry online research platform, provided demographic and disease history, and rated their agreement (0 = strongly disagree; 4 = strongly agree) with 8 CCT statements. We examined bivariate associations between CCT counseling and individual factors via Spearman’s rank correlation and chi-square tests. Results: Participants were 95% White; mean (SD) age = 65 (7) years; time since diagnosis 4 (4) years. 24% had surgery, 34% underwent radiation, 20% both; 31% currently and 18% previously received hormone therapy. 32% were diagnosed 5+ years ago; 22% reported recurrence, 31% metastatic disease. 33% reported that their health care team spoke to them about participating in a CCT, with a non-significant trend for lower prevalence if all or part of care was received at a community hospital/cancer center (24%) vs. at an academic or comprehensive cancer center or private oncology practice (47%; χ 2 = 3.03, p = .082). 25% did not receive information about CCTs from the health care team prior to making a treatment decision. 21% reported there was a CCT available to them; 35% considered a CCT for treatment; 11% participated in a CCT. Regarding beliefs about CCTs (% agree or strongly agree): 64% felt uncomfortable with treatment random assignment; 52% feared receiving a placebo; 40% feared treatment side effects; 23% believed health insurance would not cover a CCT; 16% believed no clinical trials are available in their community; 16% felt mistrust and fear of being used as a “guinea pig” for research; 11% had concern about logistical barriers, e.g., transportation; 6% did not understand what CCTs are. Conclusions: Many prostate cancer survivors are uncomfortable with random assignment to treatment in a CCT and fear receiving a potentially ineffective placebo. Our findings underscore the need for comprehensive treatment decision counseling and patient education via health care providers and patient advocacy organizations.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 5
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 30_suppl ( 2018-10-20), p. 84-84
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 30_suppl ( 2018-10-20), p. 84-84
    Abstract: 84 Background: In the era of value-based cancer care, identifying what is important to cancer survivors, and their perceived control over these experiences, can inform shared decision-making and support quality care. We examined cancer patient priorities and control to guide the development of a new measure of patient value, Valued Outcomes in the Cancer Experience (VOICE). Methods: 459 cancer patients completed an online survey and rated level of importance and control over 54 value items (0 = not at all; 4 = very much). Items of most and least importance, items with most and least control, and rating discrepancies (importance-control) were identified. Bivariate associations with socio-demographics were examined. Results: Participants were 86% non-Hispanic White; mean age = 60 years, SD= 10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis = 6.5 years, SD= 6; 22% metastatic. Items of highest importance (quite a bit to very much) included, “Having your health care team (HCT) talk to you in a way that makes sense to you” (99% of participants); “Making decisions for yourself” (99%); “Talking honestly with your HCT about your illness” (99%). Participants reported the most control over, “Talking honestly with your HCT about your illness” (89%); “Making decisions for yourself” (88%), “Understanding your illness” (84%). Greatest discrepancies were, “Having your illness not get worse or come back” (96% Important; 27% Control); “Having energy to do things that are important to you (98% Important; 41% Control); “Being able to afford medical expenses” (96% Important; 49% Control); “Having a death free from suffering” (91% Important; 40% Control); “Having your medical providers communicate with each other about your care” (94% Important; 44% Control). Greater importance/control discrepancies were associated with lower income, unemployment due to disability, and poorer health ( ps 〈 .05). Conclusions: Cancer patients experience notable discrepancies between personal priorities and their ability to control these experiences, suggesting key areas for intervention and support. Next steps include psychometric assessment to refine the VOICE scale to guide clinical and research efforts to improve patient care outcomes.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 6
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 15_suppl ( 2018-05-20), p. e21618-e21618
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 15_suppl ( 2018-05-20), p. e21618-e21618
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 7
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2020
    In:  Journal of Clinical Oncology Vol. 38, No. 6_suppl ( 2020-02-20), p. 57-57
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 38, No. 6_suppl ( 2020-02-20), p. 57-57
    Abstract: 57 Background: Treatment by a multidisciplinary healthcare team can improve patient outcomes, but not all prostate cancer (PC) patients may access multiple providers. This study explored whether differences in healthcare team at treatment were associated with PC treatment type and decision-making. Methods: Of 311 PC patients enrolled in the Cancer Support Community’s Cancer Experience Registry online, 160 (32% ever metastatic, 28% had recurrence, median 3 years since diagnosis) indicated which specialists comprised their healthcare team during treatment (urologist versus a specialist team including 2-5 doctors, 70% of which included urologists). We examined PC treatment decision-making using chi-square tests, independent sample t-tests, and linear regression. Results: The majority were not experiencing symptoms of PC at diagnosis (69%); 58% were diagnosed after a routine check-up. More PC patients with advanced disease at diagnosis had a team of specialists, whereas those diagnosed at stages 1 or 2 typically only saw a urologist ( p 〈 0.01). Most first received care at a private urology practice (44%) compared to 27% for current treatment. Treatment discussions varied by treatment for urologist-only (28%) versus a team of specialists (72%): chemotherapy (16% vs 36%, p=.01), surgery (89% vs 65%, p 〈 .01), radiation (82% vs 80%, p=.75), hormones (36% vs 75%, p 〈 .001), and active surveillance (51% vs 23%, p 〈 .001). More patients who had seen only a urologist had surgery (95% vs 43%, p 〈 .001); those seeing a specialty team tended to undergo other treatments, such as chemotherapy (4% vs 30%, p=.001), radiation (12% vs 83%, p 〈 .001), and hormones (27% vs 77%, p 〈 .001). After controlling for stage at diagnosis, those treated only by a urologist had lower treatment regret ( β=0.22, p 〈 .01). Conclusions: Advanced PC patients more often treated by a specialist team and discuss different treatment options vs. those followed by a urologist only. While effects were small, care provider type was associated with treatment regret and confidence. Healthcare teams could improve the patient experience by increasing communication surrounding navigating myriad treatment options. Clinical trial information: NCT02333604.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2020
    detail.hit.zdb_id: 2005181-5
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  • 8
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2021
    In:  Journal of Clinical Oncology Vol. 39, No. 15_suppl ( 2021-05-20), p. e18716-e18716
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 15_suppl ( 2021-05-20), p. e18716-e18716
    Abstract: e18716 Background: The COVID-19 pandemic has uniquely impacted the lives of people with cancer, but the specifics of these impacts are not fully understood. We examined: 1) the impact of COVID-19 on cancer-related health care, and 2) patients’ most prominent COVID-related concerns. Methods: From Sept-Dec 2020, 502 cancer patients completed an online survey about disruptions in cancer-related health care (types and causes of disruptions and length of health care delays). COVID-related concerns (e.g., accessing basic and medical needs, financial concerns, psychosocial impact) were assessed via 25 items rated not at all to extremely concerning, or not applicable. Group differences were examined with Pearson Chi-Square. Sample: 75% women, 82% White, age range 20-88 years (M = 60, SD = 12.1); 61% in remission, 16% experiencing cancer relapse, 13% experiencing cancer for the first time; current stage: 40% metastatic, 25% localized, 35% no stage/don’t know; time since diagnosis range 0-36 years (M = 8.8, SD = 7.0); primary cancer diagnoses: 29% breast, 27% blood cancers, 6% prostate, 5% lung, 5% colorectal, and 28% other; 47% currently in treatment. 49% were tested for COVID-19, 3% tested positive. Results: 40% (n = 200) reported a disruption in cancer-related health care: of these, 34% reported disruption in imaging services, 30% lab service, 26% routine screening, 25% supportive services, 12% treatment session (including 46% chemotherapy, 13% radiation, 13% hormone therapy, 4% surgery), and 14% other disruption, with 10% reporting delay in cancer diagnosis. Nearly half with care delays reported a delay of 2-3 months (18%) or 3+ months (30%), with 3+ months delays occurring most often for routine screenings (40%) and supportive services (37%). Primary causes for disruptions included clinicians recommending the delay (46%) and patient fear of contracting COVID-19 via in person care (31%). The top 3 areas of COVID-19-related concerns ( somewhat to extremely concerned) were: 1) others not following safety recommendations e.g., wearing masks (85%), 2) getting COVID-19 due to a weakened immune system (76%), and 3) worrying about loved ones’ health (73%). Those in remission less frequently experienced delay in care (35%) than those with first time cancer (50%) or relapse (51%, χ 2 = 10.5, p 〈 .05), and those in current treatment more frequently experienced delay in care (44%) than those not in treatment (36%, χ 2 = 3.5, p 〈 .10). Conclusions: Findings highlight the substantial impact of COVID-19 on cancer care, across various forms of care needs and health services. Patients experiencing cancer for the first time, a cancer relapse, or those undergoing treatment reported high levels of delays, with many delays in excess of 3 months. Given the unique impact of COVID-19 to cancer patients, these results highlight opportunities for care service delivery improvements as the health care community navigates competing priorities of patient safety and care quality.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
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    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2021
    detail.hit.zdb_id: 2005181-5
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  • 9
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 7_suppl ( 2018-03-01), p. 138-138
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 7_suppl ( 2018-03-01), p. 138-138
    Abstract: 138 Background: Unintentional weight loss (WL) can be a disruptive symptom of cancer, yet its psychosocial impact is not well understood. We examined cancer survivors’ experiences with unintentional WL. Methods: 320 cancer survivors completed an online survey, provided demographic, health, and unintentional WL history, and rated (0 = not at all; 4 = extremely) 19 statements about WL outcomes. We examined bivariate associations between weight status, unintentional WL, and WL outcomes. Results: Participants were 90% White; mean age = 58.8 years, SD= 11; 41% breast cancer, 23% blood cancer, 8% prostate cancer, mean time since diagnosis = 6.0 years, SD= 5; 18% metastatic, 22% current recurrence/relapse, 51% remission. 55 participants (17%) reported unintentional WL in the past 6 months (mean = 16lbs; range = 2-70; mean BMI = 27.6, SD= 6.3). These participants were less likely to be in disease remission ( p 〈 .05). Participants with unintentional WL tended to underestimate their weight category (e.g., of BMI-classified healthy weight participants, 26% believed they were underweight); κ = -.17, p 〈 .01. 51% of participants felt (somewhat to extremely) positive about WL, 49% said their health care team was supportive of WL; these statements were more strongly endorsed by people describing themselves as overweight ( ps 〈 .05). 27% believed WL caused physical weakness, 23% said WL resulted in lost control over nutrition/eating, 16% said WL made them feel like a burden, 14% said WL caused them to lose their identity; these statements were more strongly endorsed by people describing themselves as underweight ( ps 〈 .01). 20% viewed their WL as a sign of approaching end of life, 13% believed WL meant they would not be able to continue treatment; these views did not differ by perceived weight status. Conclusions: Many cancer survivors experience unintentional weight loss and associate their weight loss with negative outcomes. Survivors also often underestimate their weight status, which is notable given that personal views of one’s weight status, not BMI-derived weight status, is associated with beliefs about the impact of unintentional weight loss. Our findings suggest that people believe unintentional WL meaningfully affects their quality of life.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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  • 10
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2018
    In:  Journal of Clinical Oncology Vol. 36, No. 15_suppl ( 2018-05-20), p. e16037-e16037
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 36, No. 15_suppl ( 2018-05-20), p. e16037-e16037
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2018
    detail.hit.zdb_id: 2005181-5
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