Action Items for Breast Cancer Awareness Month

This special issue introduction provides a brief history of Breast Cancer Awareness Month and focuses on patient populations often omitted from annual marketing campaigns. The importance of research is emphasized as a means to improve the outcomes of people with metastatic breast cancer and male breast cancer as well as to address health care inequities related to breast cancer diagnosis and treatment

A History of #BCSM and Insights for Patient-Centered Online Interaction and Engagement

Purpose: Participation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors. The aims of this study are to describe the growth and changes in this community and to discuss future directions and lessons that may apply to other online support communities. Methods: Symplur Signals was used to obtain all #BCSM Twitter data from January 1, 2011, to January 1, 2020 (00:00:00 Coordinated Universal Time for both). Hashtag use by selected stakeholder groups, user locations, weekly tweet chat activity, and topics were determined. Results: From year 1 (2011) to year 9 (2019), tweets using the #BCSM hashtag increased by 424%. Tweets by patient advocates increased by 226%, with a peak in 2016. Impressions, a measure of potential tweet views, by patient advocates increased by 517%. Tweets by doctors and nonphysician health care professionals increased by 693%. Weekly #BCSM tweet chat activity peaked in 2013, increasing by 58.1% from 2011. Chat topics have included survivorship, metastatic breast cancer, death and dying, advocacy, and highlights from national breast cancer meetings. Conclusions: #BCSM has experienced tremendous growth since 2011, although there are challenges to community sustainability. The weekly chats, as well as discussions utilizing the hashtag but occurring outside of scheduled chat times, serve as an important resource for patients and offer physicians an opportunity to both support and learn from patients

Male Breast Cancer Patient and Surgeon Experience: The Male WhySurg Study.

BackgroundLittle is known about the experience of the male breast cancer patient. Mastectomy is often offered despite evidence that breast-conserving surgery (BCS) provides similar outcomes.MethodsTwo concurrent online surveys were distributed from August to October 2020 via social media to male breast cancer (MBC) patients and by email to American Society of Breast Surgeon members. The MBC patients were asked their opinions about their surgery, and the surgeons were asked to provide surgical recommendations for MBC patients.ResultsThe survey involved 63 MBC patients with a mean age of 62 years (range, 31-79 years). Five MBC patients (7.9 %) stated that their surgeon recommended BCS, but 54 (85.7 %) of the patients underwent unilateral, and 8 (12.7 %) underwent bilateral mastectomy. Most of the patients (n = 60, 96.8 %) had no reconstruction. One third of the patients (n = 21, 33.3 %) felt somewhat or very uncomfortable with their appearance after surgery. The response rate was 16.5 % for the surgeons. Of the 438 surgeons who answered the survey, 298 (73.3 %) were female, 215 (51.7 %) were fellowship-trained, and 244 (58.9 %) had been practicing for 16 years or longer. More than half of surgeons (n = 259, 59.1 %) routinely offered BCS to eligible men, and 180 (41.3 %) stated they had performed BCS on a man with breast cancer. Whereas 89 (20.8 %) of the surgeons stated that they routinely offer reconstruction to MBC patients, 87 (20.3 %) said they do not offer reconstruction, 96 (22.4 %) said they offer it only if the patient requests it, and 157 (36.6 %) said they never consider it as an option.ConclusionsThe study found discordance between MBC patients' satisfaction with their surgery and surgeon recommendations and experience. These data present an opportunity to optimize the MBC patient experience

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients.

PurposeTo characterize current experiences with communication and decision-making practices when non-medical switching to a biosimilar trastuzumab is proposed or required by cancer center or insurer.MethodsWe developed and launched 60- and 51-item internet surveys to elicit US breast cancer patient and medical oncologist lived experiences with trastuzumab biosimilars and patient information needs and seeking practices. We recruited participants using social media and administered via REDCap in 2020-2021.Results143 breast cancer patients and 33 medical oncologists completed the surveys. 63.9% patients reported having switched to a trastuzumab biosimilar and 40.8% reported receiving no prior notification about switching. 44% of patients reported learning about biosimilars primarily through self-directed learning and 41% wanting more time to discuss with oncologist. None of the oncologists reported that the decision to switch a patient to a biosimilar was initiated by them, but rather more frequently by the insurer (45.2%). About 54.8% reported not receiving any pharmaceutical manufacturer material related to the selected biosimilar. Patients and oncologists diverged in their responses to items regarding patient opportunities to ask questions, adequacy of resources, effectiveness of treatment, patient worry, and magnitude of change.ConclusionThere is a need for tailored and effective patient and oncologist information and education on trastuzumab biosimilars, along with improved healthcare communication regarding switching. The discrepancy between patient-reported experiences and oncologist perceptions of the patient experience, suggests a lack of adequate information that may be a challenge not only to the uptake of trastuzumab biosimilars, but to the patient-oncologist relationship

Supplemental Material - Improving How Clinicians Communicate With Patients: An Integrative Review and Framework

Supplemental Material for Improving How Clinicians Communicate With Patients: An Integrative Review and Framework by Tracey S. Danaher, Leonard L. Berry, Chuck Howard, Sarah G. Moore, and Deanna J. Attai in Journal of Service Research.</p

Identifying and describing cancer survivors: Implications for cancer survivorship research and clinical care

BackgroundGathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross-sectional studies.MethodsUsing publicly available databases, the authors identified national cross-sectional surveys used in the United States within the past 15 years that included a question on self-reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis.ResultsThe authors identified 14 national cross-sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was "Have you ever been told by a doctor or other health professional that you had cancer?" Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included.ConclusionsThere is no standard method for assessing self-reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross-sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care