Cancer Support Groups Research Articles

Navigator utilization among African-American breast cancer patients at a Comprehensive Cancer Center.

Patient navigation has been demonstrated to improve access to standard-of-care oncologic therapy. However, many patients - particularly those of African-American race - often do not have access to navigation upon receiving a diagnosis of cancer. As the most common cancer among African-American women is breast cancer, we sought to assess the rate of patient navigation among African-American breast cancer patients at our institution, which resides in a regional ZIP code comprised of 46% African-American residents. African-American breast cancer patients who had been discussed at our weekly breast cancer multidisciplinary tumor board over a recent three-month period were assessed by a patient navigator representing the Navigator-Assisted Hypofractionation (NAVAH) program to determine their access to navigation in their cancer care. Responses were assessed from a breast cancer support group and culled to determine a baseline proportion of navigation utilization. A total of 18 women of African-American race having been diagnosed with breast cancer were identified and assessed. Of these a total of 4 noted that they had received navigation, yielding a navigation utilization percentage of 22.2% among African-American breast cancer patients at our institution. The rate of navigation utilization among African-American breast cancer patients is poor. Despite our center residing in a region comprised of increased African-Americans, such predominance has not translated into optimizing navigation access for African-American breast cancer patients. This 22% rate of navigation utilization serves as a starting benchmark for initiatives such as the NAVAH program to provide tangible improvement in this patient population.

User-Centered Development of a Mobile App to Assess the Quality of Life of Patients With Cancer: Iterative Investigation and Usability Testing.

The treatment for cancer can have a negative impact not only on physical well-being but also on mental health and the quality of life (QoL). Health apps enable the monitoring of different parameters, but to date, there are only few that support patients with cancer and none that focuses on the assessment of QoL. Furthermore, patients as stakeholders are often only integrated at the late stage of the development process, if at all. The aim of this research was to develop and evaluate a smartphone app (Lion-App) to enable patients with cancer to autonomously measure the QoL with an iterative, user-centered approach. Patients with cancer were involved in a 3-stage process from conceptualization to the point when the app was available on the tester's private device. First, focus groups with members (N=21) of cancer support groups were conducted to understand their expectations and needs. Thereafter, individual tests were performed. After developing a prototype that incorporated findings from the focus groups, a second test cycle was conducted, followed by a beta test lasting 2 months. In our app, the QoL can be assessed via a patient diary and an integrated questionnaire. Through all stages, usability was evaluated using the modular extended version of the User Experience Questionnaire (UEQ+), including the calculation of a key performance indicator (KPI). If possible, the impact of sex on the results was evaluated. As part of the beta test, usage rates as well as age-dependent differences were also assessed. A total of 21 participants took part in the initial 3 focus groups. In the subsequent usability testing (N=18), 17 (94%) participants rated their impression through the UEQ+, with a mean KPI of 2.12 (SD 0.64, range: -3 to 3). In the second usability test (N=14), the mean KPI increased to 2.28 (SD=0.49). In the beta test, the usage rate of 19 participants was evaluated, of whom 14 (74%) also answered the UEQ+ (mean KPI 1.78, SD 0.84). An influence of age on the number of questionnaire responses in Lion-App was observed, with a decrease in responses with increasing age (P=.02). Sex-dependent analyses were only possible for the first usability test and the beta test. The main adjustments based on user feedback were a restructuring of the diary as well as integration of a shorter questionnaire to assess the QoL. The iterative, user-centered approach for development and usability testing resulted in positive evaluations of Lion-App. Our app was rated as suitable for everyday use to monitor the QoL of patients with cancer. Initial results indicated that the sex and age of participants seem to play only a minor role.

Disrupted identities, invisibility and precarious support: a mixed methods study of LGBTQI adolescents and young adults with cancer

BackgroundLesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) adolescents and young adults (AYAs) with cancer report higher levels of depression and anxiety and lower health related quality of life than non-LGBTQI AYAs with cancer, and LGBTQI adults with cancer. This mixed methods study examined LGBTQI AYAs' experiences of cancer and cancer care, to understand these health disparities.MethodsOnline surveys were completed by 95 LGBTQI AYAs with cancer (age 16–39 years); 19 AYAs took part in a one-to-one semi structured interview. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences; descriptive statistics performed on individual closed-ended survey items identified the percentage of AYAs reporting experiences identified in the qualitative analysis.Results63% of AYAs reported high or very high distress on the K10. Three themes were identified in the qualitative analysis: 1) “Identities in flux”, included subthemes “Cancer disrupts developing identities, and involvement with LGBTQI communities”; “Internalized prejudice impacts identities”; and “Cancer facilitates identities and embodiment”. 2) “Invisibility in cancer care”, included subthemes “Navigating disclosure amongst cis-heteronormative assumptions”, “Discrimination and paternalistic cancer care” and “ Cis-heteronormativity within cancer information”. 3) “Precarious social support for LGBTQI AYAs with cancer”, included subthemes “ Social support during cancer is helpful for LGBTQI AYAs”, “LGBTQI AYAs navigate limited support”, and“ Finding cancer peer support networks is difficult for LGBTQI AYAs”.ConclusionsLGBTQI AYAs with cancer experience psychosocial vulnerabilities related to identity development, experiences of care, and social support networks. These factors likely contribute to their previously evidenced elevated risk of distress, relative to both non-LGBTQI AYAs and LGBTQI older adults. AYAs affected by cancer may require additional, tailored supportive care, including targeted information resources, LGBTQI AYA specific cancer support groups, or partnerships and referrals to LGBTQI community organisations. Additionally, it is evident that health care professionals and cancer services have much work to do in ensuring LGBTQI AYAs receive affirming and appropriate care across paediatric and adult clinical settings. They must move beyond assuming all patients are cisgender, heterosexual and do not have intersex variations unless otherwise stated; work to signal inclusivity and facilitate disclosure; and be able to respond appropriately with tailored information and care, which is inclusive of LGBTQI partners, chosen family, and support systems.

Understanding Trust Determinants in a Live Chat Service on Familial Cancer: Qualitative Triangulation Study With Focus Groups and Interviews in Germany.

In dealing with familial cancer risk, seeking web-based health information can be a coping strategy for different stakeholder groups (ie, patients, relatives, and those suspecting an elevated familial cancer risk). In the vast digital landscape marked by a varied quality of web-based information and evolving technologies, trust emerges as a pivotal factor, guiding the process of health information seeking and interacting with digital health services. This trust formation in health information can be conceptualized as context dependent and multidimensional, involving 3 key dimensions: information seeker (trustor), information provider (trustee), and medium or platform (application). Owing to the rapid changes in the digital context, it is critical to understand how seekers form trust in new services, given the interplay among these different dimensions. An example of such a new service is a live chat operated by physicians for the general public with personalized cancer-related information and a focus on familial cancer risk. To gain a comprehensive picture of trust formation in a cancer-related live chat service, this study investigates the 3 dimensions of trust-trustor, trustee, and application-and their respective relevant characteristics based on a model of trust in web-based health information. In addition, the study aims to compare these characteristics across the 3 different stakeholder groups, with the goal to enhance the service's trustworthiness for each group. This qualitative study triangulated the different perspectives of medical cancer advisers, advisers from cancer support groups, and members of the public in interviews and focus group discussions to explore the 3 dimensions of trust-trustor, trustee, and application-and their determinants for a new live chat service for familial cancer risk to be implemented at the German Cancer Information Service. The results indicate that experience with familial cancer risk is the key trustor characteristic to using, and trusting information provided by, the live chat service. The live chat might also be particularly valuable for people from minority groups who have unmet needs from physician-patient interactions. Participants highlighted trustee characteristics such as ability, benevolence, integrity, and humanness (ie, not a chatbot) as pivotal in a trustworthy cancer live chat service. Application-related characteristics, including the reputation of the institution, user-centric design, modern technology, and visual appeal, were also deemed essential. Despite the different backgrounds and sociodemographics of the 3 stakeholder groups, many overlaps were found among the 3 trust dimensions and their respective characteristics. Trust in a live chat for cancer information is formed by different dimensions and characteristics of trust. This study underscores the importance of understanding trust formation in digital health services and suggests potential enhancements for effective, trustworthy interactions in live chat services (eg, by providing biographies of the human medical experts to differentiate them from artificial intelligence chatbots).

Challenges and Strategies for Improving Access to Cancer Drugs in Malaysia: Summary of Opinions Expressed at the 2nd MACR International Scientific Conference 2022.

Considerable progress has been made in cancer drug development in recent decades. However, for people in low- and middle-income countries, including Malaysia, many of these drugs are not readily available. During the 2nd Malaysian Association for Cancer Research (MACR) International Scientific Conference, a forum discussion was held to address these challenges and explore strategies to improve access to cancer medicines in the country. This paper presents the results of the said forum discussion. A few challenges to cancer drug access were highlighted, including lengthy approval and regulatory practices, cost of medicines, and manufacturing barriers. Besides, a few strategies for mitigating some of these challenges were proposed, such as mechanisms for cost reduction, uptake of biosimilars and generics, local manufacturing, public-private partnerships, strengthening the role of insurance companies, funding and regulation, and advocacy for fair pricing, by drawing examples from cancer medicines access initiatives in Malaysia and initiatives for different disease groups. Overall, this paper provides a comprehensive overview of the challenges and strategies for improving access to cancer medicines in Malaysia and provides valuable insights for policymakers, healthcare providers, the pharmaceutical industry, cancer patients, cancer support groups, and other stakeholders working on this important issue.

‘It’s communication between people who are going through the same thing’: experiences of informal interactions in hospital cancer treatment settings

PurposeIn hospital settings, patients, visitors, and staff engage in many interactions outside formal clinical encounters. Whilst many of these may be inconsequential, others contribute significantly to how patients and their carers experience cancer and its treatment. This article aims to explore the experiences and significance of interactions that occur outside formal clinical encounters in hospital cancer treatment settings.MethodsSemi-structured interviews were conducted with cancer patients, carers, and staff recruited from two hospital sites and cancer support groups. Hermeneutic phenomenology informed lines of questioning and data analysis.ResultsThirty-one people participated in the study: 18 cancer patients, four carers, and nine staff members. The experiences of informal interactions were grouped into three themes: connecting, making sense, and enacting care. The participants described how these encounters allowed connection with others in the hospital spaces, facilitating a sense of belonging, normality, and self-worth. Through these interactions, individuals participated in making sense of their experiences, to better anticipate the decisions and challenges that might lie ahead. By connecting with other individuals, they cared for others and felt cared for themselves, and were able to learn from, teach, and support each other.ConclusionsOutside the confines of the clinical discourses participants negotiate terms of engagement, sharing of information, expertise, and their own personal stories that they may employ to contribute to the individuals around them. These interactions occur within a loose and evolving framework of social interactions, an ‘informal community’, in which cancer patients, carers, and staff members play active and meaningful roles.

Experiences and management of urinary incontinence following treatment for prostate cancer: Disrupted embodied practices and adapting to maintain masculinity.

This article explores men's experiences of and management strategies for urinary incontinence (UI) following treatment for prostate cancer. Qualitative interviews with 29 men, recruited from two prostate cancer support groups, explored their post-treatment experiences. Drawing on a conceptual toolkit connecting theories of masculinities, embodiment, and chronic illness, this paper identifies older men's experiences and strategies for managing UI and explores how these are shaped by their masculinities. This article identifies interdependence between managing stigma for UI and maintaining masculinity. Men's embodied practices for engaging in activities in public, crucial to masculine identity, were disrupted. In response, they adopted new reflexive body techniques to manage and resolve their UI, and thereby address the threat to their masculine identities, characterised in three strategies: monitoring, planning, and disciplining. The new embodied practices men described suggest three factors as important components for adopting new reflexive body techniques: routine, desire, and unruliness.

Increasing Clinical Trial Participation of Black Women Diagnosed with Breast Cancer

Despite racial disparities in breast cancer mortality, Black women remain underrepresented in clinical trials. In this mixed methods research, 48 Black women were engaged via focus group discussions and in-depth interviews to better understand the lived experience of women with breast cancer. The results of this qualitative study informed the development of a subsequent online survey to identify barriers, motivators, and other factors that influence decision-making by Black women diagnosed with breast cancer when considering clinical trial participation. Among the 257 Black survey participants, most (95%) were aware of clinical trials; of those, most viewed them as lifesaving (81%) and/or benefiting others (90%). Negative perceptions such as serious side effects (58%), not receiving real treatment (52%), or risk of potential harm (62%) were indicated. Barriers included financial expenses (49%), concerns that their condition could be made worse (29%), that they would receive a placebo (28%), or that treatment was unapproved (28%). Participants were more likely than their health care providers (HCPs) to initiate discussions of clinical trials (53% versus 33%), and 29% of participants indicated a need for more information about risks and benefits, even after having those conversations. The most trustworthy sources of information on clinical trials were HCPs (66%) and breast cancer support groups (64%). These results suggest that trusted communities are key for providing education on clinical trials. However, there is also a need for HCPs to proactively discuss clinical trials with patients to ensure that they are adequately informed about all aspects of participation.

Association of psychological distress with arm morbidity symptoms in breast cancer survivors: outcomes from the use of PHQ-9 and GAD-7 questionnaires.

Although higher survival rates of breast cancer are achieved these days, breast cancer survivors are challenged with unwanted side effects from treatment or management that affect physical, functional, and psychological well-being of an individual. This study aimed to assess psychological distress status in Malaysian breast cancer survivors and factors that affected the condition. A cross-sectional study design was conducted on 162 breast cancer survivors from various breast cancer support groups in Malaysia. Psychological distress status was assessed based on depression and anxiety scores by applying the Malay version of Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder (GAD-7). Both instruments were self-administered along with a set of questionnaires comprising demographic, medical history, quality of life, and upper extremity function assessment. Outcomes from the PHQ-9 and GAD-7 were analyzed for severity level of psychological distress, and its association with relevant variables, arm morbidity symptoms, as well as the duration of cancer survivorship. The univariate analysis showed that breast cancer survivors with arm morbidities after breast surgery had a higher score of depression (5.0 vs 4.0, p = 0.011) and anxiety (3.0 vs 1.0, p = 0.026) than those who did not. Besides that, receiving fewer post-rehabilitation treatments (p = 0.049) and having a family history of cancer (p = 0.022) were correlated with higher anxiety level. The level of depression and anxiety was inversely proportionate with quality of life and positively correlated with greater disability of the arm function (p < 0.05). Subsequent analysis showed that arm morbidity symptoms including difficulties in finding a t-shirt that fits and pain in the arm area after breast cancer surgery were positively associated with ahigher level of psychological distress. Our study demonstrated the association between psychological distress with arm morbidities in breast cancer survivors. Given that arm morbidities can affect not only physical, but psychological well-being, continuous or serial assessment on both aspects during cancer treatment may effectively help to address mental health issue experienced by this cancer population.

Therapist Feedback and Implications on Adoption of an Artificial Intelligence-Based Co-Facilitator for Online Cancer Support Groups: Mixed Methods Single-Arm Usability Study.

The recent onset of the COVID-19 pandemic and the social distancing requirement have created an increased demand for virtual support programs. Advances in artificial intelligence (AI) may offer novel solutions to management challenges such as the lack of emotional connections within virtual group interventions. Using typed text from online support groups, AI can help identify the potential risk of mental health concerns, alert group facilitator(s), and automatically recommend tailored resources while monitoring patient outcomes. The aim of this mixed methods, single-arm study was to evaluate the feasibility, acceptability, validity, and reliability of an AI-based co-facilitator (AICF) among CancerChatCanada therapists and participants to monitor online support group participants' distress through a real-time analysis of texts posted during the support group sessions. Specifically, AICF (1) generated participant profiles with discussion topic summaries and emotion trajectories for each session, (2) identified participant(s) at risk for increased emotional distress and alerted the therapist for follow-up, and (3) automatically suggested tailored recommendations based on participant needs. Online support group participants consisted of patients with various types of cancer, and the therapists were clinically trained social workers. Our study reports on the mixed methods evaluation of AICF, including therapists' opinions as well as quantitative measures. AICF's ability to detect distress was evaluated by the patient's real-time emoji check-in, the Linguistic Inquiry and Word Count software, and the Impact of Event Scale-Revised. Although quantitative results showed only some validity of AICF's ability in detecting distress, the qualitative results showed that AICF was able to detect real-time issues that are amenable to treatment, thus allowing therapists to be more proactive in supporting every group member on an individual basis. However, therapists are concerned about the ethical liability of AICF's distress detection function. Future works will look into wearable sensors and facial cues by using videoconferencing to overcome the barriers associated with text-based online support groups. RR2-10.2196/21453.

Abstract 37: Exploring the Impact of Metastatic Breast Cancer Support Group in Nigeria

Abstract Purpose: Over 70% of breast cancer patients in Nigeria present metastatic/advanced breast cancer (MBC). An estimated 90% of breast cancer deaths are a result of metastatic disease, either at diagnosis or recurrence. MBC is associated with a severe burden to the patient, family, healthcare delivery system and society at large. Women living with MBC face many challenges ranging from poor access to MBC information, untreated pain, frequent breakdown of radiotherapy machines and absence of peer support. Methods: In this research, we set up the first metastatic breast cancer support group in Abuja. The group meet once every month on a face-to-face basis and also uses WhatsApp group for regular meaningful engagement. We explored the impact of the group on the patient’s quality of life (QoL) using a focused group discussion (FGD). Eighteen (18) patients participated in the two sessions of FGD. We also conducted a follow-up semi-structured interview with 8 MBC patients. Results: Many of the patients report that the support group provides a culture of love and strength over their death anxiety, especially meeting other patients who have lived with MBC longer. They also report having found peer support on the online WhatsApp group. Citation Format: Runcie C.W. Chidebe, Mary-Gloria A. Orji, Theodora Zitta-Nwosu, Khadijat Banwo-Fatai, Agha A. Agha, Darlingtina K. Esiaka, Tochukwu C. Orjiakor. Exploring the Impact of Metastatic Breast Cancer Support Group in Nigeria [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 37.

When can cancer patient treatment nonadherence be considered intentional or unintentional? A scoping review.

Treatment nonadherence in cancer patients remains high with most interventions having had limited success. Most studies omit the multi-factorial aspects of treatment adherence and refer to medication adherence. The behaviour is rarely defined as intentional or unintentional. The aim of this Scoping Review is to increase understanding of modifiable factors in treatment nonadherence through the relationships that physicians have with their patients. This knowledge can help define when treatment nonadherence is intentional or unintentional and can assist in predicting cancer patients at risk of nonadherence and in intervention design. The scoping review provides the basis for method triangulation in two subsequent qualitative studies: 1. Sentiment analysis of online cancer support groups in relation to treatment nonadherence; 2. A qualitative validation survey to refute / or validate claims from this scoping review. Thereafter, framework development for a future (cancer patient) online peer support intervention. A Scoping Review was performed to identify peer reviewed studies that concern treatment / medication nonadherence in cancer patients-published between 2000 to 2021 (and partial 2022). The review was registered in the Prospero database CRD42020210340 and follows the PRISMA-S: an extension to the PRISMA Statement for Reporting Literature Searches in Systematic Searches. The principles of meta-ethnography are used in a synthesis of qualitative findings that preserve the context of primary data. An aim of meta-ethnography is to identify common and refuted themes across studies. This is not a mixed methods study, but due to a limited qualitativevidence base and to broaden findings, the qualitative elements (author interpretations) found within relevant quantitative studies have been included. Of 7510 articles identified, 240 full texts were reviewed with 35 included. These comprise 15 qualitative and 20 quantitative studies. One major theme, that embraces 6 sub themes has emerged: 'Physician factors can influence patient factors in treatment nonadherence'. The six (6) subthemes are: 1. Suboptimal Communication; 2. The concept of Information differs between Patient and Physician; 3.Inadequate time. 4. The need for Treatment Concordance is vague or missing from concepts; 5. The importance of Trust in the physician / patient relationship is understated in papers; 6. Treatment concordance as a concept is rarely defined and largely missing from studies. Treatment (or medication) nonadherence that is intentional or unintentional is often attributed to patient factors-with far less attention to the potential influence of physician communication factors. The differentation between intentional or unintentional nonadherence is missing from most qualitative and quantitative studies. The holistic inter-dimensional / multi-factorial concept of 'treatment adherence' receives scant attention. The main focus is on medication adherence / nonadherence in the singular context. Nonadherence that is unintentional is not necessarily passive behaviour and may overlap with intentional nonadherence. The absence of treatment concordance is a barrier to treatment adherence and is rarely articulated or defined in studies. This review demonstrates how cancer patient treatment nonadherence is often a shared outcome. An equal focus on physican and patient factors can increase understanding of the two main types of nonadherence (intentional or unintentional). This differentation should help improve the fundamentals of intervention design.

Abstract 1982: Exploring the impact of metastatic breast cancer support group in Nigeria

Abstract Background: Over 70% of breast cancer patients in Nigeria present metastatic/advanced breast cancer (MBC). An estimated 90% of breast cancer deaths are as a result of metastatic disease, either at diagnosis or recurrence. MBC is associated with severe burden to the patient, family, healthcare delivery system and the society at large. Women living with MBC face many challenges ranging from poor access to MBC information, untreated pain, frequent break-down of radiotherapy machines and absence of peer support. Method: In this research, we set up the first metastatic breast cancer support group in Abuja. The group meet once every month on a face-to-face basis and also uses WhatsApp group for regular meaningful engagement. We explored the impact of the group on the patient’s quality of life (QoL) using a focused group discussion (FGD). Eighteen (18) patients participated in the two sessions of FGD. Result: Many of the patients report that the support group provides a culture of love and strength over their death anxiety, especially meeting other patients who have lived with MBC longer. They also report to have found peer support on the online WhatsApp group. Citation Format: Runcie C. Chidebe, Theodora Nwosu-Zitta, Mary-Gloria A. Orji, Khadijat Banwo-Fatai, Agha A. Agha, Darlingtina K. Esiaka, Tochukwu C. Orjiakor. Exploring the impact of metastatic breast cancer support group in Nigeria [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 1982.

The mediating effect of environmental reward on activity restriction and depressive mood in cancer survivors: a cross-sectional study

Abstract Background: Activity restriction is known as a predictor of depressive mood in cancer survivors. However, there is inconsistent evidence about precisely how this takes place. Environmental reward is a state where a person senses mastery or pleasure because of their activity, and this is known to be a possible mediator of the activity restriction effect on depressive mood. We sought to investigate that the mediating effect environmental reward could have on the relationship between activity restriction and depressive mood when moderated by cancer-related fatigue. Methods: Cancer survivors (n = 94; mean age, 60.07 years) recruited through cancer support groups in Japan participated in this study. They completed a battery of questionnaires, including demographic and clinical information about the respondents, the Activity Restriction Scale for Cancer Patients—Revised, the Environmental Reward Observation Scale, the Cancer Fatigue Scale, and the Hospital Anxiety and Depression Scale. Results: Moderated mediation analysis revealed that high levels of activity restriction predict a decrease in environmental reward, and a decrease in environmental reward exacerbates depressive mood. The full mediating effect (when the indirect effect is statistically significant and there is no direct effect from the antecedent to outcome) of environmental reward was observed when cancer-related fatigue was moderated by ±1 SD of the mean score. This implies that, regardless of the level of fatigue cancer survivors experience, it is not the activity restriction per se that predicts depressive mood but rather the inability to experience pleasurable emotions because of the activity restriction that leads to the exacerbation of depressive mood. Conclusion: From these results, environmental reward was found to be a possible mediator of activity restriction on depressive mood, consistent with behavioral models of depression. These results could explain the inconsistent findings about the direct effect of activity restriction on depressive mood and provide theoretical evidence for the effectiveness of psychological treatments for cancer survivors that focus on positive affect, such as behavioral activation interventions.

90 - Every breath: the benefits of a lung cancer support group

90 - Every breath: the benefits of a lung cancer support group

Cancer Survivors' Experiences With and Preferences for Medical Information Disclosure and Advance Care Planning: An Online Survey Among Indonesian Cancer Support Groups.

To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.

Patient opinions on controversies: In regard to low-risk prostate cancer, is Gleason 6 the old Gleason 5?

329 Background: In 2005, the International Society of Urologic Pathology effectively eliminated Gleason patterns 1 and 2, thus removing Gleason grades 2-5 as a cancer diagnosis. Today, patients with low-risk Gleason 6 prostate cancer, prostate cancer clinicians, guideline writers, and policymakers are facing issues about whether Gleason 6 lesions should be reclassified as noncancer. Some of the issues being discussed among urologists, radiation oncologists, and pathologists focus on whether to reclassify low-risk Gleason 6 prostate lesions as a noncancer with the goal of reducing patient anxiety and financial toxicity. We also asked about biopsy methods, which affects both the low-risk and favorable intermediate-risk populations, that have been a major topic in support organizations over the past two years. We conducted this survey of patients on active surveillance to determine where patients stand on these issues to help guide clinicians, policymakers, and guideline writers. Methods: We conducted a survey in October 2022 asking patients their views on these issues. We invited patients on active surveillance or previously on active surveillance for low-risk prostate cancer to respond to a 40-question survey to share their views on a range of topics related to the diagnosis of Gleason grade 6 lesions as cancer, as well as complementary issues related to innovations in biopsy and active surveillance. We had access to email lists containing ~2,500 names from the AnCan Foundation’s Active Surveillance Virtual Support Group, Active Surveillance Patients International, Prostate Cancer Support Canada, and The Active Surveillor newsletter. Other major prostate cancer support groups also distributed links to the questionnaire posted on SurveyMonkey. Results: At the deadline for placeholders for abstracts, the survey is underway. Questions for patients include: Have you experienced distress (anxiety or depression) because of the cancer label from Gleason 6? Have you experienced financial toxicity, including cancellation of insurance policies or an increase in rates, because of the cancer diagnosis? If Gleason 6 was reclassified as a noncancer, would you stop surveillance? What will you prefer as a next biopsy--transperineal to avoid the risk of sepsis and other infections or transrectal which may cause less immediate pain? Conclusions: We intend that the results will inform decision making as to the classification of Gleason 6 diagnoses.

Discrimination of Sexual and Gender Minority Patients in Prostate Cancer Treatment: Results from the Restore-1 Study.

This study is the first to quantify experiences of discrimination in treatment undertaken by sexual and gender minority prostate cancer patients. Participants were 192 gay and bisexual and one transgender prostate cancer patients living in the US recruited from North America's largest online cancer support group. In this online survey, discrimination in treatment was measured using the Everyday Discrimination Scale (EDS), adapted for medical settings. Almost half (46%) endorsed at least one item, including 43% that the provider did not listen, 25% that they were talked down to, 20% that they received poorer care than other patients, 19% that the provider acted as superior, and 10% that the provider appeared afraid of them. While most (26.3%) rated the discrimination as "rare" or "sometimes" (EDS=1-3), 20% reported it as more common (EDS≥4). Most attributed the discrimination to their sexual orientation, or to providers being arrogant or too pushed for time. Discrimination was significantly associated with poorer urinary, bowel, and hormonal (but not sexual) EPIC function and bother scores, and with poorer mental health (SF-12). Those who had systemic/combined treatment (versus either radiation only or surgery only) were more likely to report discrimination. This study provides the first evidence that discrimination in prostate cancer treatment, including micro-aggressions, appear a common experience for gay and bisexual patients, and may result in poorer health outcomes.

A qualitative exploration of the lived experiences and perceived impact of a supportive-expressive group therapy on men living with gastrointestinal cancer

Abstract Background: This study seeks to understand the functioning of a gastrointestinal (GI) men-only Supportive-Expressive Group Therapy (SEGT) program over time by exploring (1) men's lived experiences with group process and (2) perceived group impact relevant to supportive/expressive goals. Methods: A convenience sample of patients with GI cancer attending an ongoing, men-only GI cancer SEGT was interviewed at 3 and 6 months from enrollment. A qualitative study design with mixed inductive and framework thematic analysis was used. Open-ended, semistructured interviews directed the exploration of group experiences over time. SEGT goals framed the inquiry toward exploring the perceived impact of the group. Results: Twenty-three men were interviewed at 3 months and 13 men at 6 months of intervention. Men pointed to an overall global satisfaction with group process and subjects discussed. The SEGT model provided a sex sensitive, safe, and mutually supportive outlet for expressing and normalizing participants' feelings and emotions. Three central themes emerged relevant to group experiences: (1) the role of social comparison, (2) the role of supportive-expressive exchanges, and (3) the role of the group format, composition, and facilitation. Feeling heard and validated accelerated a sense of belonging and facilitated emotional disclosure. SEGT contributed to re-evaluation of life values/goals, mitigation of existential anxiety, and mood improvement. Conclusions: Group participants perceived the SEGT as effective in addressing and mitigating emotional and existential concerns. Perceived benefits were consistent with SEGT goals. The findings offer groundwork for developing men-centered cancer support groups that foster emotional exploration and expressive disclosure through validation and acceptance.

Status of Using Complementary and Alternative Medicine among Patients with Cancer in Korea: an Online Survey of Online Cancer Support Groups (KCSG PC21-20).

An increasing number of patients with cancers are interested in complementary and alternative medicine (CAM), which lacks scientific evidence. This study aimed to determine how CAM was used and how media affected patients in online cancer support groups (OCSG). Between August 18 and September 12, 2021, an online survey was conducted among the members of OCSG. The survey consisted of five parts: baseline characteristics, attitudes toward and experience with CAM, source of information and reliabilities, experience with anthelmintics, and online health information literacy and usage. Among the 644 responders, a total of 221 patients with cancer completed the survey, and 78.2% (173/221) used CAM. The users' median age was 52 years; 46.8% were males, and 43.9% had metastatic disease. Fifty-three CAM users (30.6%) discussed their physicians about CAM. In addition, 16.2% (28/173) of CAM users had the experience of anthelmintics. The use of anthelmintics in patients with cancers was associated with younger age (odds ratio [OR], 0.89; 95% confidence interval [CI], 0.84 to 0.95), metastatic disease (OR, 10.88; 95% CI, 3.39 to 34.86), previous exposure to CAM information (OR, 5.57; 95% CI, 1.01 to 30.72), experience with more types of CAM (OR, 1.98; 95% CI, 1.29 to 3.05), and side effects (OR, 5.10; 95% CI 1.46 to 17.75). Use of anthelmintics, a CAM of which information is widespread online, is affected by several factors. This study will provide essential information for developing a CAM management strategy in this digital age.