Category V: Original Research on Survivorship Programs

August 2014 Vol 5, No 4

Breast Cancer Survivors Rockin’ for Health

Jane Metsker, RN, CBPN

St. Joseph Medical Center

Background: Women Embracing and Loving Life (WELL) is a healthy lifestyle program started in October 2010 based on research showing the benefits of exercise for breast cancer survivors, prevention and/or treatment of fatigue, improving functional status with upper-body limitations and lymphedema prevention or improvement. The Quality of Life Survey research study received institutional review board approval and was initiated in October 2011. Pre- and postprogram surveys were completed by participants to assess the impact of the program in regard to pain, physical and emotional health, daily activities, exercise, food choices, and coping ability.

WELL Fusion was added in October 2012 in response to participants who wanted to continue and who were physically ready to advance to more strenuous exercise. Fusion provides additional strength training, circuit training, and more advanced Zumba routines.

Research Goals: (1) Minimize or reduce the side effects of cancer treatment; (2) promote healing and recovery; (3) provide nutrition education and accountability; (4) engage in physical exercise in a group setting; and (5) improve mental health received from group support and sharing.

Research Questions: (1) Will participation in this program improve the quality of life for breast cancer survivors? (2) Do survivors feel empowered to move toward “wellness” through this program? and (3) Does diet and exercise reduce stress for breast cancer survivors?

Methods: WELL is an 8-week program for breast cancer survivors providing nutrition and fitness information. Participants are assisted in setting individual goals to foster commitment and encourage long-term success. A registered dietitian provides education on improving nutrition and weight management (when applicable). Participants can use food diaries to track food choices.

The fitness instructor is a Pink Ribbon certified instructor. The exercise program includes the Pink Ribbon Pilates program and Zumba, exposing women to a variety of exercise choices.

The program is being offered at no charge, and participants can join at any point during the 8-week session. This gives women the opportunity to feel supported at a critical time in their care. The coordinator of this program is a breast cancer survivor, nurse, and a certified breast patient navigator.

Results: Survey results demonstrated the following: (1) increased awareness in choosing nutritious foods; (2) increased participation in fitness/exercise; and (3) improved perception of life being back to normal.

Comments by Participants:

  • “After my surgery I didn’t know where to go or what to do next and WELL has provided encouragement and guidance.”
  • “My family has been very supportive, but sharing stories with other women who have experienced many of the same things I have has given me a sense of caring and understanding.”
  • “This is the first breast cancer support group that I have been involved in and in just a few weeks it has answered many of my questions. I’ve learned about the importance of nutrition and exercise.”

Conclusion: It is anticipated that the WELL program will benefit breast cancer survivors by improving their physical health through promoting healthy nutrition and rebuilding muscular strength and endurance, reducing fatigue, and regaining range of motion and flexibility. It may also benefit breast cancer survivors by improving their psychological health by allowing them to take a more active role in their recovery and the healing process and interact with other survivors.

A Not-for-Profit Model of Survivorship Care and Navigation to Facilitate Care Planning for Young Breast Cancer Survivors

Rochelle Shoretz, JD; Amy Mines, MS; Sharon Stahl, LMSW; Adina Fleischmann, LMSW


Background: By 2015, the American College of Surgeons Commission on Cancer’s accreditation standards will call for certified cancer centers to provide a treatment summary and follow-up plan to cancer survivors. There is a pressing need for the development of collaborative and cost-effective tools to facilitate the implementation of these survivorship care plans. Oncology nurses and patient navigators have a unique opportunity to develop and implement comprehensive, proactive survivorship care planning that will meet the Commission on Cancer’s guidelines for survivorship.

Objectives: To develop a breast cancer support program that includes survivorship care plans and personalized navigation for young breast cancer survivors (diagnosed age <45 years).

Methods: Clinicians engaged in a comprehensive review of the literature regarding young adult cancer survivors and relevant support programs. More than 1400 young breast cancer survivors were surveyed to better understand their unique, unmet needs and identify priority concerns. Four national focus groups of breast cancer survivors were conducted for feedback in creating a program to address these concerns.

Results: With the data collected, Sharsheret developed Thriving Again, a comprehensive survivorship program that includes (1) a kit of tools mailed to young breast cancer survivors (survivorship care plan, tailored resources, fitness DVD, and cookbook); (2) personalized survivor navigation with a member of Sharsheret’s clinical staff; and (3) teleconferences addressing key survivorship issues. More than 1200 Thriving Again kits have been distributed to young breast cancer survivors, and Sharsheret has conducted more than 700 individualized survivor navigation sessions to date. Additionally, Sharsheret has presented 4 survivorship teleconferences addressing priority concerns identified by young breast cancer survivors.

Conclusions: The Thriving Again model can be used to advance cost-effective survivorship care through multilevel collaboration. The methods and data used to develop Thriving Again can inform the development of other programs for survivors of breast and other cancers. Healthcare professionals can cobrand survivorship kits or survivor care plans, or create new kits and care plans based on the Thriving Again model. Working collaboratively with support organizations like Sharsheret, oncology nurse and patient navigators can also refer patients for survivorship navigation to provide comprehensive survivorship planning and support.

The Impact of Exercise on Cancer-Related Fatigue

Staci Oertle, ANP-BC, MSN, OCN

Inspira Health Network Frank and Edith Scarpa Regional Cancer Pavilion

Background: Cancer-related fatigue (CRF) is one of the most common symptoms experienced by patients with cancer and may persist for months to years after completion of treatment. CRF is a stressor that causes a ripple effect on patients and their daily routines, and often results in poor quality of life (QOL). CRF is an internal stressor that causes an imbalance in the 5 dimensions of self: physiological, psychological, sociocultural, developmental, and spiritual, as described by nurse theorist Betty Neuman. Although there have been numerous studies published in recent years citing exercise as a safe and effective intervention for CRF, this particular stressor continues to be a challenge for both patients and healthcare providers.

Objectives: This study encompasses the Neuman Systems Model and utilizes exercise as a patient-centered intervention to decrease CRF and facilitate overall improvement in patients’ QOL.

Methods: This study utilized a supervised 60-day physician-referred exercise program (PREP) as an intervention for CRF, and evaluated the outcome of exercise on patients’ self-reported fatigue and QOL. The Brief Fatigue Inventory (BFI) scale was used to measure fatigue, and the Quality-of-Life Questionnaire (QLQ-C30) was used to measure QOL. A convenience sample of 70 predominantly low-income and minority cancer survivors who completed their treatment at Inspira Health Network Frank and Edith Scarpa Regional Cancer Pavilion were recruited to participate in this study.

Results: Forty patients who were eligible and enrolled in this study completed the PREP program. Pre- and posttest exercise comparisons using the BFI and QLQ-C30 revealed that study participants experienced a significant reduction in self-reported fatigue as well as a significant improvement in QOL (all P <.05).

Conclusions: Effective nursing management is essential for assessment, interventions, and successful outcomes for patients experiencing CRF. Findings suggest that oncology nurses and navigators can be instrumental in the assessment and early recognition of CRF to initiate exercise as an effective intervention to reduce fatigue and to improve QOL in cancer survivors.

Dyadic End-of-Treatment Challenges in Head and Neck Cancer: Development of a Head and Neck Cancer Survivorship Program

Ashley Laursen, BSN, RN1; Terrance Day, MD1; Jane Zapka, ScD2; Amy McEachin Buchanan, MPH2; Katherine Regan Sterba, PhD, MPH2

1Department of Otolaryngology - Head & Neck Surgery, Medical University of South Carolina; 2Public Health Sciences, Hollings Cancer Center, Medical University of South Carolina

Introduction: Head and neck cancer (HNC) is a severely debilitating disease significantly affecting quality of life for both patients and their caregivers. Head and neck cancer survivorship research is limited and has often overlooked the dyadic challenges faced at the end of treatment. Potentially unique patient and caregiver end-of-treatment needs should be identified to improve HNC survivorship care. Objectives: To evaluate and compare challenges and unmet needs in HNC dyads 6 months following diagnosis, and explore implications for the development of a specialized survivorship care program.

Methods: Patients (n = 66; 73% male; average age, 60 years) with newly diagnosed HNC and their primary caregivers (n = 69; 51% partners; 24% male; average age, 58 years) were recruited in an HNC cancer clinic and completed separate surveys to evaluate unmet needs 6 months after diagnosis. Key elements for an HNC survivorship program were identified.

Results: Survivors and caregivers reported similar unmet needs. The most prevalent needs in both dyad members included wanting up-to-date information about the cancer and its treatment (>45%) and wanting to feel more like part of the team managing their health (>35%). Dyads also commonly reported needing reassurance about their care coordination and their multidisciplinary providers’ communication (>35%). In addition, survivors and caregivers reported needing help with ongoing symptom management (>30%). Common unmet needs unique to survivors included persistent pain (52%), financial concerns (43%), and a desire to speak with other survivors (35%). Approximately one-third of the survivors also needed help with feelings of uncertainty, weight loss, adjusting to posttreatment life, and defining a new sense of normal. Needing more emotional support and help dealing with the impact their cancer had on relationships were also reported (>30%). Caregivers uniquely reported needing help reducing stress (30%). Lastly, 24% of survivors reported continued use of tobacco products.

Conclusions: This study highlighted common persistent physical, emotional, and social concerns of HNC survivors and caregivers. Findings indicate that a comprehensive survivorship program is needed to prepare dyads for the posttreatment period. In addition to addressing physical and emotional recovery concerns, programs should also help dyads manage concerns about life after treatment, identify those with high-risk behaviors, and help dyads understand their follow-up care schedule plan.

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