Cancer Support Groups Research Articles

Impact of pre-treatment counselling on decisional regret of prostate cancer survivors: Cross-sectional analysis of patient-reported experience following diagnosis or treatment.

Prostate cancer (PCa) impacts patient lives beyond oncologic concerns alone. PCa survivorship entails all impacts of PCa, from time of diagnosis to end of life. This may include decision regret (DR). We aimed to determine survivor experiences from a functional perspective throughout survivorship. Our cross-sectional survey was circulated to all members of the Manitoba Prostate Cancer Support Group. Questions explored patient understanding of functional impacts concerning treatment. Survey items included binary and Likert scale questions, and an open-answered question asking how care may be improved. Responses were used to identify predictors of DR. A total of 514 patients received our survey with a response rate of 23.7% (n=122). Most survivors were offered radical prostatectomy (RP) or radiation therapy, at 73.0% and 63.9%, respectively; 14.9% reported lacking understanding of treatment impact on erections. Similarly, 11.5% reported lacking understanding of treatment on urinary continence. Predictors of DR included treatment with RP and low pre-treatment understanding of potential erectile dysfunction (ED) and urinary incontinence. PCa survivors are at high risk of DR, particularly those who undergo treatment with RP and those who identify as having low pre-treatment understanding of potential ED and urinary incontinence. Virtual care did not impact DR. Results highlight the importance of thorough counselling on functional aspects of PCa management prior to treatment.

Abstract B004: Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates

Abstract Background: In America, Black metastatic breast cancer (MBC) patients are disproportionately underrepresented in clinical research, of which the majority of participants are white - leaving research less representative of Black patients. Interventions: To increase the sustainable participation of Black MBC patients in clinical research, Count Me In (CMI)—a cancer research initiative based at the Broad Institute of MIT and Harvard—partnered with the Tigerlily Foundation (TLF), a patient advocacy organization, to develop an equitable, collaborative approach connecting CMI researchers with Black MBC patients to create culturally relevant educational materials for the Black MBC community. Findings: Participating Black MBC patients developed the following materials: a tri-fold brochure, two types of informational postcards, and a social media digital toolbox. The patients co-developed and approved the materials' content and design elements. Materials were also translated into Spanish. Three iterations were drafted until materials were submitted to CMI’s IRB at Dana-Farber Cancer Institute (DFCI) for approval. The distribution strategy for materials to the larger Black MBC community was designed collaboratively with patients. This included sharing information and resources with their local oncology nurse navigators, placing printed materials in community practices, enclosing materials in folders distributed at initial diagnosis, and further connecting with other community-based breast cancer support groups and organizations. During the pilot distribution period - from August 2023 to February 2024 - CMI sent informational packages with materials to 8 different community contacts across the United States. Participating patients had shared contact information of those in their own social network. By the end of the pilot period, 38 new patients registered in CMI identified as having MBC, with 18% self-identifying as Black/African American and 24% self-identifying as Hispanic/Latino - both of which are overrepresentative when compared to the general population of those who self-identify as Black/African American and Hispanic/Latino. Conclusion: CMI and TLF utilized an equitable approach that included patients at the initial planning of a project to the final production and distribution of the materials. Two recommendations could be provided to researchers and organizations from this successful collaborative partnership and pilot. First, patient advocates desire to be involved in creating and sharing resources with their communities. Organizations can honor their commitment with financial and non-financial opportunities. Second, partnering appropriately with patient advocates will increase clinical study representation. The success of this pilot demonstrates how researchers and patients can collectively close the inequities gap and pave the path forward for more equitable cancer research. Citation Format: Colleen M. Nguyen, Eboney D. Thompson, Juanita Miller, Shanette Caywood, Tiana Russell, Sue Steele, Virginia Leach, Lizzie Wittig, Taisha Hendrickson, Kolbe Phelps, Priyanka Bhakhri. Reaching the Community: Collaborating with Black/African American Metastatic Breast Cancer Patients and Advocates [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 B004.

Abstract B040: Building a lung cancer awareness event

Abstract Introduction: Lung cancer is the top cancer killer in the United States. Lung cancer screening (LCS) can decrease mortality of lung cancer, but current uptake is low. Concentrated effort during lung cancer awareness month has potential to positively impact uptake. Patient engagement and education are meaningful ways for medical students to make an impact. Methodology: We created a lung cancer awareness event during November (Lung Cancer Awareness Month) that aims to educate and engage regarding lung cancer and LCS. Prior to event day: 1. We secured buy-in from LCS leadership at the hospital, nurse navigators of the LCS program, leaders of nonprofit organizations and lung cancer support group leadership. 2. We recruited medical students to assist with creating informational materials, promoting the event and staffing day-of. All students attended a 1-hour training session on priority messages regarding lung cancer and LCS, engaging people in surveys and connecting eligible patients with LCS. 3. Informational materials and promotional flyers were sent to the lung cancer screening leadership to ensure messaging was in-line with messaging by the hospital and nonprofit organizations. Day-of event prep: 4. Tables with lung cancer educational materials were placed at the hospital entrances where foot traffic was greatest and staffed by medical students, nurse navigators and representatives from the nonprofits and lung cancer support groups. Educational and engagement materials at the table included lung cancer informational pamphlets, smoking cessation pamphlets and surveys to determine LCS eligibility. 5. Each table had a lung cancer and LCS trivia wheel with small give away items to attract and engage people at the tables. Event: 6. Medical students greeted people who approached the table and explained the purpose of the event (e.g. increasing lung cancer and LCS awareness and education). High priority messages regarding lung cancer and LCS (e.g. lung cancer is the top cancer killer, LCS can lower risk of dying from lung cancer, many eligible patients may not be getting screened) was conveyed by the student to the participant. 7. Participants were invited to complete the survey to determine LCS eligibility. 8. Participants were invited to answer a trivia question to win a lung cancer awareness t-shirt prize. After event: 9. Eligible patients identified by event surveys were followed-up by the nurse navigators to connect to LCS. Results: This lung cancer awareness event was successful in engaging people with lung cancer and lung cancer screening education. 73 people were recorded to have stopped by the table; 58 completed the survey in full. This event is within the power of medical students to do and can be set up easily with buy-in from faculty, hospital staff and local nonprofits. Conclusion: A student-run lung cancer awareness event is a feasible and impactful method to quickly engage patients in lung cancer screening. This event model can be translatable to future years and potentially expanded to other institutions and centers. Citation Format: Michelle Gomez-Guevara, Kristine Chin, Anthony Smith Jr., Masashi Azuma, Grace X. Ma, Cherie P Erkmen. Building a lung cancer awareness event [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 B040.

Breast Radiation Therapy Survivorship and Cancer Support Groups: an Opportunity for Community Engagement and Education Through the Addressing Breast Cancer Dermatologic Side Effects (ABCDEs) Program.

Breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer deaths in women in the USA. To serve under-insured breast cancer patients in South Texas, we designed a patient education program to improve health literacy of secondary dermatologic changes after completing radiation therapy.A needs assessment survey was distributed to better understand the patients' stage of treatment, experiences with radiation-induced dermatologic side effects, and over-the-counter skin products and home remedies used.Of the 33 patients that participated in this program, nearly all patients (93.94%, n = 31) are either currently undergoing treatment or have completed treatment. Of the 31 individuals, 74.19% of patients (n = 23) have completed treatment at least 9-12months ago, 22.58% (n = 7) are currently receiving chemotherapy, and 3.23% (n = 1) are currently undergoing radiation therapy. Among the dermatologic side effects, patients experienced changes to skin color, redness, and burns/burning sensation at the greatest severity. The top products used by survey participants were prescription-strength topical corticosteroids (65.63%) followed by oral analgesics (28.13%) and compression sleeves (25.00%). Aloe vera (15.63%) was the most used complementary and alternative therapeutic treatment. By surveying experiences of radiation-induced dermatologic side effects in predominantly under-resourced and minority communities, we can better tailor patient education programs to reflect patients' experiences. Overall, this program can enhance clinicians' insight on under-resourced patient experiences to improve health literacy and dispel common misconceptions surrounding breast cancer treatment, management, and survivorship.

Finding my tribe: a qualitative interview study of how people living with metastatic breast cancer perceive support groups.

This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC. Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis. Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks. MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC. MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.

Artificial Intelligence-Based Co-Facilitator (AICF) for Detecting and Monitoring Group Cohesion Outcomes in Web-Based Cancer Support Groups: Single-Arm Trial Study.

Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence-based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. The aim of this study was to develop a method to train and evaluate AICF's capacity to monitor group cohesion. AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. RR2-10.2196/21453.

A Mixed-Methods Feasibility Study Linking a Community-Based Weight Loss Program with an African American Breast Cancer Support Group.

A Mixed-Methods Feasibility Study Linking a Community-Based Weight Loss Program with an African American Breast Cancer Support Group.

Revising sense of community to understand typical and extremist virtual communities

Virtual communities are online groups organized around a shared interest within which members exchange information and socio-emotional support. Some virtual communities are positive (e.g., cancer support groups) or at least neutral (e.g., cooking groups). Others, like extremist virtual communities, focus on spreading misinformation and supporting violence. Theory and research have not adequately addressed the creation, maintenance, and face-to-face consequences of pro-social, neutral, or extremist virtual communities. One reason is because the research relies on a definition and model of sense of community for which empirical validation is deficient. Following examples in the organizational sciences and social psychology, I revise the sense of community construct to focus on its core meaning: literally, a person’s perception that a group is a community. Then using entitativity and social identity theories, I develop a new model of sense of community and propose theoretical boundaries (e.g., membership, identity, and self-categorization) to explain why prosocial and extremist virtual communities differ. I end with the challenges facing a research program studying extremist virtual communities.

Abstract PO3-28-02: BODY-IMAGE DISTRESS IN BREAST CANCER SURVIVORS AND THEIR EVALUATION OF MEDICAL TATTOOING FOLLOWING SURGERY

Abstract A review of the literature reveals a high incidence of body-image distress among breast cancer survivors who have undergone surgery, which is a natural response to the significant changes in their appearance. Reconstructive surgery, utilizing implants or flaps, may be employed to restore breast size and shape. Medical tattooing can recreate the nipple-areola complex and decorative appliques can conceal scars and skin color variations. Both reconstructive surgery and medical tattoos are associated with patient-reported satisfaction, yet further research is necessary to understand their combined impact on body-image distress. To investigate this, a survey was distributed among national breast cancer support groups and advocacy organizations, yielding 207 responses from individuals meeting the study's criteria. The participants were categorized into two groups: those who received post-surgical medical tattoos (n = 61) and those who did not (n = 146). The study also examined how participants evaluated the cosmetic and decision satisfaction of patients who made various surgical and cosmetic intervention choices. This was accomplished by having participants rate images of patients who had received three types of intervention: mastectomy and reconstruction only, mastectomy and medical tattooing only, and mastectomy, reconstruction, and medical tattooing. Using linear regression and multilevel modeling that controlled for demographic and clinical factors associated with body-image distress, the findings demonstrated that participants with medical tattoos reported significantly lower levels of body-image distress, depressive symptoms, and perceived stress compared to those without medical tattoos. Furthermore, participants rated images of patients who underwent both reconstruction and medical tattooing post-mastectomy as having significantly higher cosmetic and decision satisfaction ratings than images of patients who received reconstruction or medical tattooing alone. This research expands on our understanding of body-image distress in survivors as a multidimensional construct and may serve to indicate potential means for intervention. Enhancing our understanding of how breast cancer treatment and surgery affects survivors' body-image distress may aid healthcare professionals in offering additional psychoeducation and recommendations. Furthermore, presenting information about medical tattooing as a complementary cosmetic option early in the treatment process allows patients the opportunity to consider it within the context of their overall treatment plan. Table. Linear regression results using BIBCQ as the outcome variable and medical tattoo group as the predictor variable with covariates included. Note. PHQ9 = Patient Health Questionnaire-9. PSS = Perceived Stress Scale. Citation Format: Miranda Proctor, Jeffrey Cassisi. BODY-IMAGE DISTRESS IN BREAST CANCER SURVIVORS AND THEIR EVALUATION OF MEDICAL TATTOOING FOLLOWING SURGERY [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-28-02.

A QUALITATIVE EXPLORATION OF THE EFFECT OF A METASTATIC BREAST CANCER DIAGNOSIS ON PHYSICAL ACTIVITY AND QUALITY OF LIFE

BACKGROUND Physical activity is beneficial for people living with metastatic breast cancer, a cancer that has spread to other body parts such as liver, lungs and lymph nodes, but less is known about patient views on supporting them in an active lifestyle. Through a qualitative scope this study aimed to investigate the effect of a metastatic breast cancer diagnosis on physical activity and quality of life aiming to capture exercise motivators, barriers, and preferences to inform and introduce feasible and effective physical activity in treatment plans. METHODS This study involved semi-structured interviews with eight female participants from the local Metastatic Breast Cancer Support Group in Portsmouth. RESULTS Reflexive thematic analysis was conducted on the data, and five higher order themes were developed: (i) Life is affected by diagnosis and treatment, (ii) Limitations to being more physically active, (iii) Physical activity’s impact on quality of life, (iv) Factors supporting/enhancing physical activity and quality of life, and (v) Actions to support physical activity and quality of life. Generally, participants reported that living with metastatic breast cancer had negatively altered their quality of life, including their ability to be physically active. Perceptions of the introduction or continuation of physical activity were welcomed. Despite the benefits and factors found to support physical activity engagement several barriers were identified, such as treatment focus and exercise misconceptions. CONCLUSION Metastatic breast cancer impacts quality of life and the ability to be physically active, being active is generally perceived to be beneficial, and social and environmental support is important to being physically active.

The Not-So-Good Cancer: Psychosocial Challenges for YA Thyroid Cancer Patients and Survivors and the Creation of a YA Thyroid Cancer Support Group.

Thyroid cancer (TC) has been deemed "the good cancer" owing to its slow growth, availability of targeted treatment, and low mortality rates. Inconsistent with this name, survivors of TC have similar or poorer quality of life than individuals with other types of cancer. Furthermore, young adults (YAs; age 18-35) with TC are at risk for additional psychosocial challenges. Support groups have been identified as a mechanism for improving quality of life among other YAs with cancer. A YA TC group is warranted given the unique experiences of TC survivors. Discussion points from a newly developed YA TC support group are reviewed.

Experiences and management of uncertainty following treatment for prostate cancer

This article explores men’s experiences and management of uncertainty following treatment for prostate cancer. Qualitative interviews with 29 men, recruited from two prostate cancer support groups (PCSGs) in the Southeast of England, explored prostate cancer and post-treatment experiences of uncertainty. Data were analysed thematically using a constructivist grounded theory approach. Four common uncertainties were identified: (1) fear of cancer recurrence from continued biomedical monitoring following treatment; (2) fear of cancer recurrence from unexplained bodily symptoms; (3) concerns about post-treatment side effects; and (4) concern with having made the ‘right’ treatment choice. Three strategies for how men managed these uncertainties were also identified: (1) interpreting biomedical knowledge; (2) planning for future uncertain events; and (3) engaging with support groups that served as vigilance networks. Nuanced strategies of vigilance are identified, of reinterpreted pasts and imagined futures to manage uncertainties. These strategies temporally displace the uncertain present and are employed individually and communally as part of vigilance networks. This article adds to theoretical resources for understanding uncertainty management and evidences the chronicity of men’s post-treatment experiences of prostate cancer.

Cancer survivorship: understanding the patients’ journey and perspectives on post-treatment needs

Background Cancer treatments have many adverse effects on patient’s health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation.Methods The current study aimed to collect information on the post-treatment needs of cancer patients including barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. Cancer survivors living in the Republic of Ireland were recruited from the University Hospital Galway, community-based cancer centres, cancer support groups and social media platforms to participate in the study and attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics selected. The topics were developed in consultation with a patient and public involvement (PPI) group supporting the study. The topics list was circulated to all participants prior to the focus group. The interviews were audio recorded and transcribed verbatim. Focus group transcripts were analysed subjected to a thematic framework analysis using NVivo.ResultsThirty-six participants took part in 9 focus groups. Our analysis uncovered two main themes. The first theme ‘cast adrift with no direction’ was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme ‘everybody is different’ was clustered into two sub-themes: side effects get in the way; and personalised exercise program.ConclusionThe study highlighted the lack of information and support needed by patients living with and beyond cancer. The study also highlighted the need for a personalised exercise programme designed to target the individual patient symptoms that would be ideal for the mitigation of long term symptoms and in improving QOL.

Perceptions of Telehealth-Based Cancer Support Groups at a Rural Community Oncology Program.

Cancer peer support groups are crucial in improving quality of life outcomes and extending cancer survival. Using the Health Belief Model (HBM) and Theory of Planned Behavior (TPB) as guiding frameworks, this study examined perceptions of telehealth-based cancer support groups among individuals treated for cancer at a rural oncology program. We distributed online surveys to 34 survivors or individuals undergoing cancer treatment who actively participated in virtual cancer support groups, achieving a 79.4% response rate (27 participants). The survey, blending quantitative and qualitative methodologies, assessed demographic characteristics, overall telehealth satisfaction, satisfaction with telehealth-based peer support, and perceived social support. Quantitative data were analyzed using descriptive statistics, while qualitative responses were examined through template analysis, focusing on the HBM and TPB constructs. Participants expressed general satisfaction with telehealth and indicated a willingness to use telehealth services again. Participants cited ease of use and broader access to cancer support groups with telehealth approaches. Barriers to telehealth included the lack of interpersonal connection, internet access, and technical difficulties. The findings underscore the nuanced perceptions of telehealth-based cancer support groups in a rural oncology setting. Despite acknowledging telehealth's limitations, participants appreciated its role in facilitating access to support. The findings provide valuable insights for optimizing digital health interventions, emphasizing the need for a balanced approach that considers both the potential and the challenges of telehealth in cancer care. This study offers critical guidance in optimizing digital health interventions and ensuring accessible, effective support for cancer patients in rural areas.

"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.

Investigating the Needs and Concerns of Lesbian, Gay, Bisexual, Transgender, Queer, or Questioning Cancer Patients

ABSTRACT The needs and concerns of lesbian, gay, bisexual, transgender, queer, or questioning (LGBTQ+) patients with cancer remain poorly understood. This is important as LGBTQ+ patients have an elevated risk of developing certain cancers and have poorer oncologic outcomes compared to non-LGBTQ+ patients. The lack of research may be linked to the complexity of studying the needs and concerns of this patient population. This review aimed to describe the evidence that sought to identify the needs and concerns of LGBTQ+ cancer patients. Studies were extracted using keywords such as “LGBTQ” and “Oncology.” Patient participants were excluded if they did not identify as LGBTQ+ and if they did not have cancer or were not cancer survivors. Healthcare professionals were excluded if they were not oncology specific. A total of 22 studies met our inclusion criteria. LGBTQ+ cancer patients expressed concerns surrounding heteronormative assumptions made by healthcare professionals, a lack of LGBTQ±specific cancer support groups, and psychosexual concerns such as erectile dysfunction following cancer treatment. Oncology healthcare professionals lacked the knowledge and education that are required to manage this patient cohort. Further research is required to investigate the needs and concerns of LGBTQ+ cancer patients specifically in the radiation oncology setting.

“Fear of raising the problem without a solution”: a qualitative study of patients’ and healthcare professionals’ views regarding the integration of routine support for physical activity within breast cancer care

ObjectiveThe benefits of physical activity across the cancer continuum for many adult cancers are well established. However, physical activity is yet to be routinely implemented into health services throughout the world. This study aims to explore patients’ and healthcare professionals’ views about integrating conversations and support for physical activity into routine care during treatment for breast cancer.MethodsHealthcare professionals and patients from across the UK living with or beyond breast cancer were invited to take part in semi-structured interviews that were conducted online. Recruitment for the study was advertised on social media, in cancer support groups and newsletters. Data were analysed using inductive thematic analysis.ResultsThree themes captured perceptions of integrating support for physical activity in routine breast cancer care among 12 health care professionals (who deliver breast cancer care) and 15 patients. Themes between healthcare professionals and patients overlapped, and therefore, combined themes are presented. These were: (1) current practice; (2) implementation in care and (3) training needs.ConclusionMany healthcare professionals who offer cancer care are reluctant to raise the topic of physical activity with patients, yet patients have suggested that they would like additional support to be physically active from their medical team. Providing healthcare professionals with education regarding the benefits of physical activity to reduce the risk of recurrence along with evidence based low-cost, remote interventions would allow them to integrate conversations about physical activity within routine cancer care for all patients.

Changing Care Journey for Patients with Multiple Myeloma in the United States

BACKGROUND Management of the hematologic malignancy multiple myeloma (MM) requires a sequence of treatment decisions across the course of the disease to extend survival and maximize quality of life (QoL). With the introduction of novel and increasingly effective therapies and the consequent evolution of treatment paradigms, these decisions have become more complex and personalized. This study aimed to explore how patients living with MM are navigating a rapidly changing care journey. METHODS A non-interventional, qualitative study was conducted in adult patients with MM in the United States. Individuals were recruited through the Gryt Health Cancer Community and social media. Data collection centered on a virtual semi-structured interview. Participants were assigned to a group based on refractoriness to at least one proteasome inhibitor, immunomodulatory drug, and/or anti-CD38 monoclonal antibody (non-refractory; single or double refractory; triple refractory). Qualitative data were coded and analyzed for salient themes. This study was reviewed and approved by an Institutional Review Board. RESULTS Thirty-two participants (12 non-refractory; 10 single or double refractory; 10 triple refractory) completed the study (Table). Participants were diagnosed between 1998 and 2021 (median: 2017); 38% had been diagnosed within the past 5 years. Data related to the care journey clustered around four key environments: treatment, healthcare, social/cultural, and personal factors (Figure). Important shifts were observed in the treatment environment. Notably, 34% (N = 11) of participants were currently off treatment (5 non-refractory; 1 double refractory; 5 triple refractory). Participants with double and triple refractory disease had chimeric antigen receptor (CAR) T-cell therapy-induced remission; however, those with non-refractory disease were off maintenance therapy stating they wanted relief from treatment toxicities and ‘to give my body a break’. This suggests that patients and physicians are attaching increased importance to QoL in making treatment decisions. Within the healthcare environment, participants discussed sites of care and who was delivering care. At least 75% of participants had received care and/or treatment from a National Cancer Institute (NCI)-designated cancer center at some point since diagnosis. Participants with non-refractory disease were least likely to have interacted with an NCI-designated cancer center. Nearly all participants had received guidance from a MM specialist at some point in their care. Reasons for seeking guidance from a MM specialist included referral from a doctor, recommendation from advocacy organizations or support groups, the need for MM-specific expertise, and to ensure the best care in special circumstances (e.g., age at diagnosis, comorbidities). In the social/cultural environment, an active MM community has arisen aided by advocacy organizations and support groups. All participants mentioned interacting with organizations or groups, which played a meaningful role in quickly dispersing current trusted information, empowering patients to advocate for themselves, and often served as an informal way to learn from MM specialists. A combination of personal factors specific to each patient (e.g., demographics, disease aggressiveness, comorbidities) also factor into the care journey. Although not a focus of this study, there is growing momentum to improve access to care for patients. Participants acknowledged challenges to accessing expertise and care; challenges included travel logistics, out-of-pocket costs, care responsibilities for loved ones, insurance barriers, and wait times to coordinate care. Participants mentioned plans to access expertise or additional expertise if their disease progressed or if they relocated. CONCLUSIONS This study identified specific areas within four key environments (treatment; healthcare; social/cultural; personal factors) that are impacting the MM care journey. Of note were changes to the treatment paradigm and changing patterns of access to expert care. Participants reported that MM specialists, NCI-designated cancer centers, advocacy organizations, and support groups played an important role in pursuit of personalized care. Understanding the evolving care journey is necessary to support patients with MM in a changing landscape and to optimize treatment success.

A pilot randomized controlled trial of a mind-body resiliency program for fear of cancer recurrence: Qualitative findings.

503 Background: Up to 70% of cancer survivors have elevated fear of cancer recurrence (FCR). Behavioral approaches are promising for managing FCR but lack testing in a scalable, synchronous, remotely-delivered, group format. This NCCIH-funded pilot RCT tested an adapted mind-body resiliency program (IN FOCUS) in comparison to a usual care control (UC; referral to virtual, cancer support groups). Methods: Adult survivors of any non-metastatic cancer (N=64) were recruited from two Boston-area academic medical centers (July 2021-March 2022). Inclusion criteria included primary treatment, elevated FCR (FCR Inventory severity≥16), English fluency, no undertreated serious mental illness, and access to Zoom. Survivors were randomized (1:1) to either 8 sessions of IN FOCUS or UC. Individual exit interviews were conducted virtually with high rates of completion (91% IN FOCUS, 94% UC). Open-ended questions probed survivors on study enjoyableness, convenience, helpfulness, odds of future skill use, satisfaction, and FCR. Interviews were recorded, transcribed, and analyzed using hybrid deductive/inductive coding by three coders (MM, ET, DH) with a senior coder (GY) for resolving discrepancies. Themes were iteratively collapsed and expanded through consensus. Results: Survivors randomized to IN FOCUS found group delivery (i.e., hearing insights from others, sharing similar cancer experiences) and learning a variety of new skills (i.e., positive psychology such as appreciations and humor, relaxation/breathing, CBT and health behaviors) as the most enjoyable and helpful aspects. Some survivors voiced challenges with scheduling, limited time for group discussion, and length of sessions. Homework was helpful yet challenging for survivors to implement independently. Virtual delivery and electronic materials were identified as most convenient, but some wished the manual was less dense and printed as a hard copy. Survivors valued the group facilitator’s rapport, empathy, and group diversity in terms of cancer diagnosis, but desired more diversity in age, race, and gender. IN FOCUS survivors described reductions in FCR, primarily attributed to cognitive (i.e., self-efficacy, changed perspective) and health behavior changes. However, several IN FOCUS survivors reported having no change in FCR, due to needing more time to incorporate skills or recent health events. UC survivors described benefits from reading study surveys, which prompted survivors to reflect on their psychosocial functioning, and coping skills. Conclusions: The IN FOCUS intervention and study materials were well-received and participants appreciated the integration of a variety of skills, in particular positive psychology followed by relaxation, CBT, and health behavior skills. Findings will guide future optimization and efficacy testing with heterogenous cancer survivors with FCR. Clinical trial information: NCT04876599 .

The Relationship Between Yoga Practice Dosage and Perceived Stress, Anxiety, and Self-reported Health Among Breast Cancer Survivors Who Practice Yoga.

The aim of this anonymous online study was to explore the yoga practice of breast cancer survivors to determine if yoga dosage (frequency and duration of practice) was related to stress, anxiety, and self-reported health in female survivors. Participants were recruited from online breast cancer support groups during a 3-month period (June-September 2019). Demographic information, stage and treatment of breast cancer, and frequency of yoga participation, including a home yoga practice were reported. Measures include the Perceived Stress Scale, State-Trait Anxiety Inventory, and self-reported health. Cumulative yoga dosage was calculated. Thirty-five women participated (mean age = 55 years) and were divided into low and high yoga dosage groups based on the sample distribution. Low dosage of yoga was operationally defined as a cumulative dosage that fell within the lowest quartile (≤25%). Findings indicated no difference between the low-dosage group compared with the high-dosage group for perceived stress and self-reported health; but the high dosage yoga group had lower state anxiety scores (P < .05). All participants reported good self-reported health. These findings contribute to our knowledge of the psychosocial aspects of breast cancer survivorship and raise questions for further research quantifying the therapeutic dosing of yoga practice.