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Addressing Physical Activity Needs of Survivors by Developing a Community-Based Exercise Program: LIVESTRONG® at the YMCA

Ann-Hilary Heston
Anna L. Schwartz
Haley Justice-Gardiner
Katherine H. Hohman
CJON 2015, 19(2), 213-217 DOI: 10.1188/15.CJON.213-217

Background: Although methods of cancer detection and treatment have improved, the side effects of treatment can cause profound debilitation that may linger years after treatment ends. Exercise during and after cancer treatment is safe, and it minimizes many of the deleterious physical and emotional side effects. With this evidence in mind, the LIVESTRONG Foundation and the YMCA of the USA collaborated to develop a community-based physical activity program for survivors, LIVESTRONG® at the YMCA.

Objectives: This article provides in-depth information about the development of the LIVESTRONG at the YMCA program and its subsequent spread to meet the physical activity needs of survivors across the country.

Methods: Participating YMCAs engage in regular data collection efforts to track progress on organizational change and program delivery. These efforts include a staff evaluation survey, functional assessment of participants, patient-reported health status assessment, and patient program evaluation.

Findings: From the time of its development, the LIVESTRONG at the YMCA program has served more than 29,000 survivors and trained more than 2,200 LIVESTRONG at the YMCA instructors. A national survey of more than 1,600 program participants demonstrates positive outcomes on health and well-being, as well as intent to continue exercising after the program’s end.

Because of advancements in the methods of early detection and treatment of cancer, about 14.5 million Americans with a history of cancer were alive on January 1, 2014; by January 1, 2024, estimates project that this number will increase to about 19 million (American Cancer Society [ACS], 2014). With slightly less than 1 in 2 men and a little more than 1 in 3 women predicted to be diagnosed with cancer in their lifetime (ACS, 2015), the need for services that focus on quality of life during and after treatment is becoming increasingly important. Cancer treatment can cause a person to lose as much as 35% of his or her physical ability, limiting participation in activities of daily living, negatively affecting social and emotional function, and spurring other physical problems (e.g., bone loss, weakened heart and lung function) (Justice-Gardiner & Heston, 2011; Schwartz, 2004). The adverse effects of cancer treatment may be immediate, resolving during a period of days or weeks, or they may be persistent, lasting years after treatment is completed (Schmitz et al., 2010).

Since the first research study on patients with cancer and exercise was conducted in 1986, a growing body of evidence has demonstrated that exercise during and after cancer treatment is safe and minimizes the adverse effects of treatment (Karvinen, Carr, & Stevinson, 2013; MacVicar & Winningham, 1986). Exercise has been shown to improve cardiovascular fitness, muscle strength, body composition, fatigue, anxiety, depression, self-esteem, happiness, and several components of quality of life (i.e., physical, functional, and emotional) in survivors (Courneya, 2003). For those who exercise during and after treatment, physical activity can help to attenuate treatment-related symptoms (Irwin & Ainsworth, 2004). Beyond mitigating several common treatment-related side effects and benefiting health-related quality of life, exercise has been shown to be well tolerated and safe among patients with cancer (Jones & Alfano, 2013; Mishra et al., 2012). As evidence of the benefits of exercise for survivors continued to grow, the need for a nationally disseminated physical activity program tailored to survivors in a community-based setting became clear.

The LIVESTRONG Foundation, a nonprofit organization with the goal of providing support to people affected by cancer, and the YMCA of the USA, a national resource center supporting more than 2,700 YMCAs located across the country, came together to address this need. The organizations aimed to develop a physical activity program that could be offered outside of the clinical setting in a supportive environment where individuals could heal after starting or completing cancer treatment. This article describes the development and spread of the resulting physical activity program for survivors, LIVESTRONG® at the YMCA, and provides results from participant and staff evaluations.

Methods

Development of the Program

To initiate the process of program development, in 2007, the two organizations convened a group of experts in cancer survivorship (i.e., researchers, academicians, and public and private practitioners and administrators). These experts helped to identify and define a series of gaps in service for survivors that YMCAs could fill. The gaps covered not only how and with what the YMCA should engage survivors but also the broader environmental context, including the need for new community partners. The gap areas and related goals are listed in Table 1.

These gaps represented an opportunity for the YMCA to transform itself from a place that was typically focused on an already active population to one that was focused on survivors. In 2008 and 2009, two cohorts of 10 YMCAs sought ways to close these gaps. One way they did so was through piloting physical activity programs for survivors using the Institute for Healthcare Improvement’s (IHI’s) Breakthrough Series, which is an evidence-based model (IHI, 2003) designed to help organizations innovate to better meet the needs and interests of their constituents. Through this formal learning process, YMCA staff worked at their local facilities and collectively with the other cohort members to transform their respective organizations into supportive places for survivors and to respond to the lack of physical activity programs by creating and amending existing programs. Program development included consideration of guidelines regarding the development of exercise programs for survivors. These guidelines, created by the expert panel, featured exercise precautions and appropriate modifications, and they allowed YMCAs to develop programs that responded to their survivor community and partner needs and interests.

Upon completion of the pilots, staff at the YMCAs shared experiences and successes and harvested common program practices and components. Pilot YMCAs increased awareness about cancer prevention and survivorship, including survivors, their health risks, and appropriate physical activity. This was evidenced by enhanced partnerships with the oncology community and more referrals from healthcare providers, training program instructors, and YMCA staff. It also was shown by modifications to each YMCA’s facilities or operational practices to ensure that survivors had a safe, healthy, and comfortable environment. The experience of each pilot YMCA was shared with the expert panel and with other pilot YMCAs to ultimately inform the creation of a specific program model, curriculum, and training for the program.

The Program

LIVESTRONG at the YMCA is an evidence-informed physical activity program that draws on evidence showing the safety and benefits of physical activity for survivors (Courneya, 2003; Irwin & Ainsworth, 2004; Jones & Alfano, 2013; Mishra et al., 2012). The LIVESTRONG at the YMCA program adheres to American College of Sports Medicine guidelines for survivors engaging in physical activity (www.acsm.org/access-public-information/roundtables) (Schmitz et al., 2010). The goals of the LIVESTRONG at the YMCA program are to empower adult survivors to improve their functional capacity and to increase their quality of life through an organized program of fitness and strength. The program is a free 12-week, small-group physical activity program led by specially trained LIVESTRONG at the YMCA instructors. Groups typically range in size from 6–16 participants. Instructors are selected for having strong relationship-building skills (e.g., understanding, empathy, ability to develop relationships with and among survivors) and experience and expertise in exercise instruction. In addition, instructors must meet the following training requirements to achieve certification as a LIVESTRONG at the YMCA instructor.

• Engaging with Cancer Survivors E-Learning (one hour)

• Lymphedema webinar (one hour)

• CPR certification (two to five hours)

• Foundations of Group Exercise (eight hours) or Foundations of Strength and Conditioning (16 hours) or certification from another accredited and approved organization

• LIVESTRONG at the YMCA instructor training (16 hours)

Program instructors create a physical activity plan tailored to each LIVESTRONG at the YMCA participant based on his or her medical, social, and physical activity histories. As participants execute this plan by attending two classes a week for 12 weeks for a total of 24 sessions, they work toward improving aerobic fitness, building muscle mass and strength, and increasing flexibility and balance. In addition, using positive interactions and active listening, the instructors facilitate peer-to-peer support in each class by helping groups of survivors to share their stories and perspectives. Instructors aim to create communities of survivors who engage in safe physical activity while building relationships, reducing stress, and improving their quality of life.

Spread of the Program

Upon the successful completion of the pilot cohorts, a national infrastructure was developed to facilitate the spread of the LIVESTRONG at the YMCA program. This infrastructure consists of technical advisors who support learning cohorts; an institutionalized LIVESTRONG at the YMCA instructor training that can be accessed through the YMCA’s national training system; program materials, including a curriculum guide; recruitment materials; data collection forms and systems; and, at times, grant support for program startup. As new cohort opportunities arise, YMCAs wanting to become LIVESTRONG at the YMCA providers must demonstrate their readiness and commitment to offering the program. A simple and reliable readiness assessment is used to ensure that a YMCA’s staff team has the understanding, knowledge, and skills to support survivors. YMCAs must complete the readiness assessment that is then scored by two independent reviewers using a standardized scale. If the YMCA receives a score indicating sufficient capacity to become a program provider and if its staff commit to delivery expectations (i.e., participating in a learning cohort, training YMCA staff as program instructors, and collecting data), it can move forward with becoming a LIVESTRONG at the YMCA provider.

Learning Cohort

• YMCAs participate in a six-month onboarding and learning process. During this time, YMCAs follow a monthly work plan focused on tasks, including

• Assessing the YMCA’s facilities and operations to ensure that survivors experience a safe, healthy, and comfortable environment

• Distributing LIVESTRONG Foundation resources (e.g., the LIVESTRONG Guidebook) and referring participants who require one-on-one help to the LIVESTRONG Foundation’s cancer navigation services

• Enhancing partnerships in the oncology community to spread awareness of the program and generate referrals from healthcare providers

• Interviewing and conducting focus groups with survivors in their communities to increase their understanding of cancer and its impact.

Throughout the six-month learning process, YMCAs are supported by a technical advisor from the national office who engages the participating YMCAs in in-person meetings, cohort calls, and one-on-one support to ensure that they are progressing along in their work plan.

Instructor Training

YMCAs are required to appropriately prepare staff to deliver the LIVESTRONG at the YMCA program. All potential instructors must fulfill training requirements for LIVESTRONG at the YMCA instructors; this includes 28–39 hours of training. YMCAs must also train all other YMCA staff to anticipate and properly respond to program-related questions from survivors and YMCA members.

Data Collection

YMCAs engage in regular data collection efforts that track progress on organizational change and program delivery. A staff evaluation survey is used to assess the YMCA staff members’ understanding of the YMCA’s focus on survivorship and to ensure that they can provide adequate support for inquiries about LIVESTRONG at the YMCA. This brief survey is designed to be sent to all staff electronically and asks them to rate their competency and confidence in supporting survivors and to suggest opportunities for education and improvement. YMCAs report the number of survivors served through the program quarterly. Instructors conduct functional assessments of participants to measure aerobic fitness, strength, and flexibility and balance at the beginning and end of the program. In addition, participants complete the Patient-Reported Outcomes Measurement Information System 29-item Health Profile (PROMIS-29), which measures health status for physical, mental, and social well–being at the beginning and end of the program (Cella et al., 2010). At the end of the 12-week program, participants are asked to complete a program evaluation to report their satisfaction with the program. The 11-question evaluation can be administered online via email or printed and handed out to participants. It asks participants to rate their experiences with and suggestions for the LIVESTRONG at the YMCA program. Only staff evaluations, the number of participants served, and participant program evaluations are collected at the national level by YMCA of the USA.

Results

Since the program’s launch in 2008, LIVESTRONG at the YMCA has spread to 174 YMCA associations and is delivered at 416 sites in 37 states across the country. To date, the YMCA has served more than 29,000 participants who, on average, attend 19 of the 24 sessions, according to program providers. In addition, the YMCA has trained more than 2,200 LIVESTRONG at the YMCA instructors.

The staff evaluation survey, which is used to assess a staff member’s understanding of the YMCA’s focus on survivorship and to ensure that he or she can provide adequate support to survivors, has been completed by 1,591 staff (representing staff from 34% of provider YMCAs). Staff completing this survey include front-line support staff, staff in other program areas (e.g., aquatics, child care), senior-level leaders, and LIVESTRONG at the YMCA instructors. In all, 68% of staff report having a part-time position at the YMCA, and 30% report being full time. Staff members’ time working for the YMCA varies: 23% have been working at the YMCA for less than one year, 37% have been working at the YMCA for one to four years, and the remaining 40% have been working at the YMCA for five or more years. Staff report understanding the YMCA’s focus on supporting survivors (87% strongly agree or agree) and having confidence in being able to help direct survivors to appropriate program information (79% strongly agree or agree) (see Table 2). If any YMCA has a high percentage of staff indicating a lack of understanding or confidence in serving survivors, they are asked to address this issue in their work plan and to learn from their peers on cohort calls about tactics other YMCAs are using to successfully ensure staff competency. These YMCAs are also supported by a technical advisor from the national office.

Program evaluation data from 1,668 participants have been captured in the national data collection system, representing 7% of program participants. The most frequently cited source of referral is a doctor or other healthcare professional (27%), followed by a friend or family member (22%). Overall, 78% of participants were not YMCA members when they started the program, but once the program ended, about half (51%) indicated that they had already joined or planned to join the YMCA. Participants reported being pleased with the environment of the YMCA and their participation in the program.

Implications for Nursing Practice

Despite evidence-based guidelines and a plethora of research demonstrating the benefits of exercise for survivors, most patients do not receive clear instruction to exercise (Demark-Wahnefried, Aziz, Rowland, & Pinto, 2005; Wolin, Schwartz, Matthews, Courneya, & Schmitz, 2012). Nurses and other healthcare professionals need to recommend exercise to all of their patients and refer them to appropriate programs (Rock et al., 2012). Nurses should engage patients in a dialogue about exercise at each visit (Wolin et al., 2012). Oncology nurses cannot be expected to be experts in exercise prescription, but they do need to be knowledgeable about the benefits of exercise during and following treatment, as well as referral resources in their community (Jones & Alfano, 2013) (see Figure 1).

For patients with specific physical problems, initial referral to physical therapy may be appropriate. However, for the vast majority of survivors, direct referral to a program, such as LIVESTRONG at the YMCA, is fitting and promotes healthy survivorship (Mishra et al., 2012). Oncology nurses may refer to a searchable map of all LIVESTRONG at the YMCA program sites (www.livestrong.org/what-we-do/our-actions/programs-partnerships/livestro...) to see if their community YMCA offers the program. If so, they can use the listed contact information to reach out to YMCA staff, who can provide informational material and help to determine a patient referral strategy. If a nearby YMCA does not offer the program, nurses are encouraged to register their interest in the program with local YMCA leaders (e.g., executive director, health and wellness director), who can contact YMCA of the USA about opportunities to become a provider.

Conclusion

Evidence clearly demonstrates the many benefits of exercise for survivors. Clinicians need to familiarize themselves with survivor exercise guidelines and dedicate a few minutes of every clinic visit to discussing the importance of regular exercise. They should also refer survivors to appropriate, affordable, and acceptable exercise programs, such as LIVESTRONG at the YMCA. Community-based organizations like the YMCA, which have transformed their organizations to accommodate the survivor community, can be seen as key partners in the continuum of care for survivors.

The authors gratefully acknowledge Megan Heavrin for writing assistance and the participants and local YMCA providers of the LIVESTRONG at the YMCA program. The authors also thank members of the expert panel convened by the LIVESTRONG Foundation and the YMCA of the USA: Wesley Alles, PhD, Tim Byers, MD, MPH, Kerry S. Courneya, PhD, Colleen Doyle, MS, RD, Angelina Esparza, MPH, RN, Michael Goldstein, PhD, James S. Gordon, MD, Genné McDonald, PT, Alexander Ng, PhD, Julia H. Rowland, PhD, Carole Schneider, PhD, Kathryn H. Schmitz, PhD, MPH, Anna Schwartz, PhD, FNP, FAAN, and Kerri Winters-Stone, PhD.

References

American Cancer Society. (2014). Cancer treatment and survivorship facts and figures 2014–2015. Retrieved from http://www.cancer.org/acs/groups/content/@research/documents/document/ac...

American Cancer Society. (2015). Cancer facts and figures 2015. Retrieved from http://www.cancer.org/acs/groups/content/@editorial/documents/document/a...

Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., . . . Hays, R. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63, 1179–1194. doi:10.1016/j.jclinepi.2010.04.011

Courneya, K.S. (2003). Exercise in cancer survivors: An overview of research. Medicine and Science in Sports and Exercise, 35, 1846–1852. doi:10.1249/01.mss.0000093622.41587.b6

Demark-Wahnefried, W., Aziz, N.M., Rowland, J.H., & Pinto, B.M. (2005). Riding the crest of the teachable moment: Promoting long-term health after the diagnosis of cancer. Journal of Clinical Oncology, 23, 5814–5830. doi:10.1200.JCO.2005.01.230

Institute for Healthcare Improvement. (2003). The Breakthrough Series: IHI’s collaborative model for achieving breakthrough improvement. Retrieved from http://www.ihi.org/resources/Pages/IHIWhitePapers/TheBreakthroughSeriesI...

Irwin, M.L., & Ainsworth, B.E. (2004). Physical activity interventions following cancer diagnosis: Methodologic challenges to delivery and assessment. Cancer Investigation, 22, 30–50.

Jones, L.W., & Alfano, C.M. (2013). Exercise-oncology research: Past, present, and future. Acta Oncologica, 52, 195–215. doi:10.3109/0284186X.2012.742564

Justice-Gardiner, H., & Heston, A. (2011). Delivering a community-based physical activity program for cancer survivors [Abstract]. Psycho-Oncology, 20(Suppl. 2), 68–69.

Karvinen, K.H., Carr, L.J., & Stevinson, C. (2013). Resources for physical activity in cancer centers in the United States. Clinical Journal of Oncology Nursing, 17, E71–E76. doi:10.1188/13.CJON.E71-E76

MacVicar, M.G., & Winningham, M.L. (1986). Promoting the functional capacity of cancer patients. Cancer Bulletin, 38, 235–239.

Mishra, S.I., Scherer, R.W., Geigle, P.M., Berlanstein, D.R., Topaloglu, O., Gotay, C.C., & Snyder, C. (2012). Exercise interventions on health-related quality of life for cancer survivors. Cochrane Database of Systematic Reviews, 8, CD007566. doi:10.1002/14651858.CD007566.pub2

Rock, C.L., Doyle, C., Demark-Wahnefried, W., Meyerhardt, J., Courneya, K.S., Schwartz, A.L., . . . Gansler, T. (2012). Nutrition and physical activity guidelines for cancer survivors. CA: A Cancer Journal for Clinicians, 62, 242–274. doi:10.3322/caac.2114

Schmitz, K.H., Courneya, K.S., Matthews, C., Demark-Wahnefried, W., Galvão, D.A., Pinto, B.M., . . . Schwartz, A.L. (2010). American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Medicine and Science in Sports and Exercise, 42, 1409–1426. doi:10.1249/MSS.0b013e3181e0c112

Schwartz, A.L. (2004). Cancer fitness: Exercise programs for patients and survivors. New York, NY: Fireside.

Wolin, K.Y., Schwartz, A.L., Matthews, C.E., Courneya, K.S., & Schmitz, K.H. (2012). Implementing the exercise guidelines for cancer survivors. Journal of Supportive Oncology, 10, 171–177. doi:10.1016/j.suponc.2012.02.001

About the Author(s)

Ann-Hilary Heston, MPA, is a senior manager of Chronic Disease Prevention Programs at the YMCA of the USA in Chicago, IL; Anna L. Schwartz, PhD, FNP-BC, FAAN, is an associate professor in the School of Nursing at Northern Arizona University in Flagstaff; Haley Justice-Gardiner, MPH, CHES, is a director of Program Services at the March of Dimes Texas Chapter in Austin; and Katherine H. Hohman, MPH, is a senior manager of Quality Improvement at the YMCA of the USA. The authors take full responsibility for the content of the article. The authors did not receive honoraria for this work. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the authors, planners, independent peer reviewers, or editorial staff. Heston can be reached at ann-hilary.heston@ymca.net, with copy to editor at CJONEditor@ons.org. (Submitted May 2014. Revision submitted June 2014. Accepted for publication June 17, 2014.)

 

References 

American Cancer Society. (2014). Cancer treatment and survivorship facts and figures 2014–2015. Retrieved from http://www.cancer.org/acs/groups/content/@research/documents/ document/acspc-042801.pdf

American Cancer Society. (2015). Cancer facts and figures 2015. Retrieved from http://www.cancer.org/acs/groups/content/@editorial/documents/document/a...

Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., . . . Hays, R. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63, 1179–1194. doi:10.1016/j.jclinepi.2010.04.011

Courneya, K.S. (2003). Exercise in cancer survivors: An overview of research. Medicine and Science in Sports and Exercise, 35, 1846–1852. doi:10.1249/01.mss.0000093622.41587.b6

Demark-Wahnefried, W., Aziz, N.M., Rowland, J.H., & Pinto, B.M. (2005). Riding the crest of the teachable moment: Promoting long-term health after the diagnosis of cancer. Journal of Clinical Oncology, 23, 5814–5830. doi:10.1200.JCO.2005.01.230

Institute for Healthcare Improvement. (2003). The Breakthrough Series: IHI’s collaborative model for achieving breakthrough improvement. Retrieved from http://www.ihi.org/resources/Pages /IHIWhitePapers/TheBreakthroughSeriesIHIsCollaborative ModelforAchievingBreakthroughImprovement.aspx

Irwin, M.L., & Ainsworth, B.E. (2004). Physical activity interventions following cancer diagnosis: Methodologic challenges to delivery and assessment. Cancer Investigation, 22, 30–50.

Jones, L.W., & Alfano, C.M. (2013). Exercise-oncology research: Past, present, and future. Acta Oncologica, 52, 195–215. doi:10 .3109/0284186X.2012.742564

Justice-Gardiner, H., & Heston, A. (2011). Delivering a community-based physical activity program for cancer survivors [Abstract]. Psycho-Oncology, 20(Suppl. 2), 68–69.

Karvinen, K.H., Carr, L.J., & Stevinson, C. (2013). Resources for physical activity in cancer centers in the United States. Clinical Journal of Oncology Nursing, 17, E71–E76. doi:10.1188/13 .CJON.E71-E76

MacVicar, M.G., & Winningham, M.L. (1986). Promoting the functional capacity of cancer patients. Cancer Bulletin, 38, 235–239.

Mishra, S.I., Scherer, R.W., Geigle, P.M., Berlanstein, D.R., Topaloglu, O., Gotay, C.C., & Snyder, C. (2012). Exercise interventions on health-related quality of life for cancer survivors. Cochrane Database of Systematic Reviews, 8, CD007566. doi:10.1002/14651858.CD007566.pub2

Rock, C.L., Doyle, C., Demark-Wahnefried, W., Meyerhardt, J., Courneya, K.S., Schwartz, A.L., . . . Gansler, T. (2012). Nutrition and physical activity guidelines for cancer survivors. CA: A Cancer Journal for Clinicians, 62, 242–274. doi:10.3322/caac.2114

Schmitz, K.H., Courneya, K.S., Matthews, C., Demark-Wahnefried, W., Galvão, D.A., Pinto, B.M., . . . Schwartz, A.L. (2010). American College of Sports Medicine roundtable on exercise guidelines for cancer survivors. Medicine and Science in Sports and Exercise, 42, 1409–1426. doi:10.1249/MSS.0b013e3181e0c112

Schwartz, A.L. (2004). Cancer fitness: Exercise programs for patients and survivors. New York, NY: Fireside.

Wolin, K.Y., Schwartz, A.L., Matthews, C.E., Courneya, K.S., & Schmitz, K.H. (2012). Implementing the exercise guidelines for cancer survivors. Journal of Supportive Oncology, 10, 171–177. doi:10.1016/j.suponc.2012.02.001