Category II: Psychological Support

August 2015 Vol 6 No 4
  C1 Physician–Patient Discourse on Side Effects Related to Metastatic Breast Cancer Treatment: The “Make Your Dialogue Count” Survey
Adam M. Brufsky, MD, PhD1; Ivis Sampayo2; Stephen Jones, MD3; Patricia Gordon, CRNP1; Robyn Bell Dickson, BS4

1University of Pittsburgh Medical Center, PA; 2SHARE, New York, NY; 3Molecular Health, The Woodlands, TX; 4Harris Poll, New York, NY

Background: Approximately 5% of newly diagnosed breast cancers in the United States are metastatic, and up to 30% of women diagnosed with early-stage disease will develop metastatic breast cancer (mBC). Patient-centered communication and shared decision-making with the oncologist leads to improved care and quality of life in patients with mBC.

Objectives: The Make Your Dialogue Count survey probed potential gaps in physician–patient discourse to understand the needs of patients and to identify the areas of communication that need improvement.

Methods: The survey was conducted from June to August 2014 online, by paper, and by telephone, and included US women (age ≥21 years) with mBC and licensed US medical oncologists who treat ≥5 women with mBC monthly. Survey respondents were not necessarily associated with one another. Patient data were unweighted. Oncologist data were weighted by geographic region, number of years in practice, and sex, to match the actual proportions in the population. The significant differences between groups were determined using a standard t-test of column proportions and means at the 95% confidence interval level (marked by *).

Results: A total of 359 women (median age, 53 years) and 252 oncologists (median practice, 15 years) completed the survey. At the initial mBC diagnosis, 90% of oncologists reported it was important or very important to discuss side effect (SE) management, with oncologists practicing longer (≥15 years vs <15 years) more likely to have felt this way (95%* vs 84%). Only 58% of patients stated that SE management was actually discussed. At treatment change, oncologists perceived anxiety in their patients about managing treatment SEs (70%; 80%* vs 60% for oncologists practicing longer vs shorter), adjusting to a new regimen and its impact on their lifestyle (70%; 78%* vs 61%), and determination to treat their mBC without interfering with their daily life (46%; 56%* vs 36%). By contrast, at treatment change, 44% of patients stated that they felt anxious about managing their treatment SEs, 33% felt anxious about adjusting to a new treatment regimen and its impact on their lifestyle, and 41% were determined to manage their mBC without interfering with their daily life. Oncologists practicing longer were more likely to strongly agree that they desired to do more to help patients manage their SEs (53%* vs 34%) and were less likely to let emotions keep them from providing information to patients (17%* vs 29%). Nonetheless, oncologists practicing longer (31%) and shorter (24%) sometimes did not discuss with patients that mBC is incurable.

Conclusion: Our findings suggest that patients’ attitudes and emotions differ from those perceived by oncologists, especially oncologists who have been practicing longer. Nurse navigators must understand the potential differences in attitudes between patients and oncologists to preemptively act to minimize the effects of these gaps. Improved oncologist–patient dialogue ensures that physicians will address patient needs and that frank discussions of difficult and/or emotional topics will occur.

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  C2 Emotional and Psychological Characteristics of Women with Triple-Negative Breast Cancer: Results from Living Beyond Breast Cancer’s National Breast Cancer Assessment of Education and Support Needs
Janine Guglielmino, MA1; Kathleen Swiger, MPH, MA1; Jocelyn Sendecki, MSPH, MS2; Hope S. Rugo, MD3; Susan M. Domchek, MD4; Carey K. Anders, MD5; Carrie Tompkins Stricker, PhD, RN6; Hillary C.M. Nelson, PhD, MPH4; Arin Ahlum Hanson, MPH, CHES1; Hayley Dinerman, JD7; Catherine Creme Henry, MA1

1Living Beyond Breast Cancer, Bala Cynwyd, PA; 2Biostatistical Consultant, Philadelphia, PA; 3University of California, San Francisco; 4University of Pennsylvania, Philadelphia; 5University of North Carolina, Chapel Hill; 6Consultant, Philadelphia, PA; 7Triple Negative Breast Cancer Foundation, Norwood, NJ

Background: In late 2006, medical journals began publishing studies about triple-negative breast cancer (TNBC), a subtype of breast cancers that do not overexpress estrogen receptors, progesterone receptors, or HER2. In response to this newly described breast cancer subtype, Living Beyond Breast Cancer (LBBC) developed programs tailored to this diagnosis. Responses to a program evaluation suggested that women with TNBC wanted guidance on managing their emotional concerns. To address possible gaps in psychosocial services, LBBC began a comprehensive needs assessment of women diagnosed with TNBC in 2013.

Objectives: To identify the unique educational, psychological, and support needs of women with TNBC, and to disseminate these findings to patients, survivors, healthcare professionals, advocates, and breast cancer organizations.

Methods: In an 80-question online survey, respondents self-reported their breast cancer subtype and rated their emotions at diagnosis and during and after treatment on a scale of “none,” “low,” “moderate,” and “high.” Responses from 656 women with TNBC (25.1%) were compared with 1954 women without TNBC (74.9%). Differences between women with and without TNBC were assessed at each time point using logistic regression. Using generalized logistic modeling, differences in score changes were categorized by cancer subtype as decreased, same, or increased.

Results: At all time points in an unadjusted analysis, women with TNBC reported more fear, anxiety, and worry than women without TNBC; this finding was only statistically significant for fear and anxiety at diagnosis (high fear, 67% vs 62%; P = .046; high anxiety, 68% vs 64%; P = .046). Between treatment and posttreatment, women with TNBC were significantly less likely to report a decrease in negative emotion (fear, 58% vs 66%; anxiety, 54% vs 65%; worry, 53% vs 63%; P <.001 for all).

Conclusion: Women with TNBC, especially those diagnosed at stage II or higher, experience greater fear, anxiety, and worry than women without TNBC from diagnosis though posttreatment. These data support the development of interventions specific to the emotional needs of patients with TNBC, including referral to a mental health or social work professional to provide the healthcare team with a complete understanding of the total patient. Better understanding of the differences between patients with TNBC and other patients allows oncology nurses to address the unique needs of women with TNBC, enhance patient experience, and potentially improve outcomes.

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  C3 Navigating Adolescents and Young Adults Through the Cancer Continuum: A Peer Support Program at Nationwide Children’s Hospital
Paula Sanborn, RN, BSN, CPN1; Anthony N. Audino, MD2

1Nationwide Children’s Hospital, Columbus, OH; 2Nationwide Children’s Hospital, The Ohio State University, Columbus

Background: As many as 70,000 adolescents and young adults (AYAs) between the ages of 15 and 39 years are diagnosed with cancer annually. AYAs are at a unique developmental stage in their lives where peers and social acceptance are extremely important, and cancer can disrupt this important time. Many AYA patients and survivors verbalize their difficulties in developing and maintaining relationships with peers during or after their cancer treatment. Being socially isolated during this time has been shown to affect health outcomes. Offering support through organized group activities or one-on-one peer mentorship helps to create an environment for newly diagnosed AYA patients and survivors to establish relationships with someone who understands them.

Objectives: To (1) create a setting where AYA patients and survivors feel comfortable talking about cancer-related issues; (2) create developmentally appropriate quarterly events to promote bonding among participants; (3) include educational presentations related to age-appropriate wellness and living with cancer; (4) promote positive bonding relationships that continue throughout treatment and survivorship; (5) initiate open dialogues between patients and survivors about diagnosis, building relationships, dating, fertility, alternative medicine, education, and sexuality; (6) create monthly “coffee talks” outside the hospital for patients to talk with a clinical social worker or psychologist; (7) allow participants to bring a friend or an age-appropriate sibling to the events (no parents); and (8) match new patients with on-therapy or off-therapy patients with similar hobbies and diagnosis.

Methods: The presentation will discuss the importance of peer support to the AYA population. Although outcomes are anecdotal and subjective, positive participant satisfaction and feedback on peer support have indicated that the AYA population is able to communicate more easily and build relationships with each other. The AYA participants provide feedback through surveys and evaluations of what educational needs or topics they want to discuss, as well as what types of events they prefer. The team includes 2 oncologists, a nurse practitioner, nurse navigator, social worker, events coordinator, and psychologist who meet biweekly.

Results: The participants’ ages ranged from 15 to 33 years. All AYAs felt there was the right amount or too few events. Suggestions for future events included rafting and canoeing, sporting events, and amusement parks. Participants were interested in the topics of survivorship, alternative medicine, research, and fertility. Quotes included, “Great to relate to others that can understand your circumstances,” and, “It helped me meet new friends!”

Conclusion: Our program offers age-appropriate education while facilitating social interactions outside the hospital, providing a healthy outlet for open discussions among AYAs.

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  C4 Online Video Support Group Pilot: A Novel Method of Connecting Young Women Diagnosed with Breast Cancer
Medha Sutliff, MS1; Stacy Lewis, CHES1; Michelle Esser, JD, MBA1; Lori Atkinson2; Jean Rowe, LCSW, OSWC, CJT3; Jennifer Stanley1; Nicole Taylor1; Christina Stephens, MSW3

1Young Survival Coalition, New York, NY; 2Young Survival Coalition, Indianapolis, IN; 3Young Survival Coalition, Atlanta, GA

Background: In its 17-year tenure, the Young Survival Coalition (YSC) has provided resources, connections, and outreach to young women. Young women diagnosed with breast cancer have a strong desire to connect in-person with other young survivors. YSC launched its Face 2 Face (F2F) Network program on April 1, 2013. This program allows a young survivor, located anywhere in the country, to start her own F2F network and connect with young survivors in her community. However, not all young women can participate in-person in F2F for a variety of reasons, including location, timing of meetings, and illness.

Objectives: To create a web-based initiative where young women diagnosed with breast cancer can connect online and by video to “see” and support each other, as well as reduce their sense of isolation.

Methods: YSC initiated an 8-month online video support group pilot, with 6 groups meeting monthly. Two groups focused on specific populations—women under age 30 years and young women with metastatic breast cancer. A YSC staff person provided technology support at the start of each meeting. A paid facilitator or a peer volunteer led each meeting. A variety of technology platforms were used, with being the most reliable and the most commonly used platform.

Results: Approximately 29 young women participated regularly across the 6 groups. Postmeeting and postpilot evaluations were strongly positive. A total of 80% of participants felt their concerns were addressed during the meetings, and that being able to “see” other young women helped to build their community and add to the support they received. Sixty-seven percent of survey respondents remained in the same group throughout the pilot. The top reason for participating in the support group was to connect with other young survivors (70%). The topics of most interest were sex and intimacy and anxiety (tied), followed by side effects. More than half of the respondents (54%) reported that they wanted a facilitator to lead the groups instead of a peer, and 73% said that they would participate in online video support groups again if they were offered. A text message reminder of the upcoming support group meeting, received the day before the meeting, was preferred over an e-mail reminder.

Conclusion: YSC’s online support group program is a viable and innovative method of connecting young women affected by breast cancer, providing the opportunity to give and receive support in the comfort of their own homes.

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  C5 The Use of Music Therapy to Promote Relaxation and Reduce Pain and Anxiety in Patients During Infusion
Regina Kenner, RN

Mary Washington Healthcare Regional Cancer Center, Fredericksburg, VA

Background: The Mary Washington Healthcare Regional Cancer Center (MWHC RCC) is an accredited program with the American College of Surgeons Commission on Cancer. An integrative medicine program was developed for the center in 2012 to offer additional patient resources for improving patients’ quality of life and function. Music therapy services are offered to patients receiving treatment at MWHC RCC’s outpatient infusion center. This service is grant-funded by the Mary Washington Hospital Foundation and is provided at no cost to patients. The music therapist began treating patients at the MWHC RCC in January 2014.

Objectives: To measure the effectiveness of using evidence- based practices of music therapy to promote relaxation and reduce pain and anxiety levels in patients during infusion therapy.

Methods: After the patient consents to a music therapy session, the therapist engages the patient in a presession survey. At the completion of the session, the therapist engages the patient in a postsession survey. A standardized pre- and posttreatment survey designed by the Integrative Medicine Program Coordinator rates the patient’s level of relaxation, pain, and anxiety on a scale of 1 to 5. The music therapy surveys were evaluated at 6 months and again at 18 months.

Results: The January to June 2014, July 2014 to June 2015, and 18-month average scores for presession relaxation were 4.1, 4.2, and 4.1, respectively, and the postsession relaxation average scores were 1.5, 1.3, and 1.4, respectively. There was a 65.9% improvement in the level of relaxation after music therapy. The presession pain level average scores were 3.3, 1.4, and 2.4, respectively, and the postsession pain level average scores were 2.4, 1.2, and 1.8, respectively. The level of pain after music therapy was reduced by 33%. The presession anxiety level average scores were 3.8, 2.5, and 3.1, respectively, and the postsession anxiety level average scores were 1.4, 0.6, and 1.0, respectively. There was a 67.8% reduced level of anxiety after music therapy.

Conclusion: Patients with cancer are seeking out opportunities to enhance their wellness and quality of life during treatment. Integrative therapies, such as music, provide options, allow for more personalized support, and actively engage patients in improving their health status. Based on our analysis of the surveys, music therapy has proved to be effective in increasing patients’ level of relaxation and decreasing their levels of pain and anxiety during infusion therapy. Music therapy demonstrates the ability to enhance quality of life for patients with cancer and is a beneficial resource for emotional and psychological support.

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Last modified: August 10, 2023

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