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Iowans Living Beyond Cancer: Thriving Through Survivorship The Iowa Cancer Survivorship Plan The Iowa Consortium for Comprehensive Cancer Control ...working together to conquer cancer. •••••••••••••••••••••••••••••••••••• ACKNOWLEDGEMENTS Iowans Living Beyond Cancer: Thriving Through Survivorship is the final report of the Lance Armstrong Foundation (LAF) planning grant received by the Iowa Department of Public Health - Comprehensive Cancer Control Program (IDPH - CCC). The Patient and Family Resources Implementation Group (IG) of the Iowa Consortium for Comprehensive Cancer Control (I4C) joined with the staff and tackled this project with enthusiasm and heart. With their efforts, this project came to fruition, so many thanks to their members. This project would have not happened without the efforts of the IDPH - CCC staff and especially LAF whose encouragement and support are an inspiration in itself. Most importantly, this project and report would not have happened without the incredible sharing, input and real life stories from the Iowa cancer survivors around the state. When we started the project, we had an idea of how it would unfold. At the same time, we were open to the process of hearing from survivors themselves and to see where they would take this project. Thank you to all who participated in and facilitated the January 2007 Iowa Communications Network (ICN) statewide forums and special thanks to those individuals who committed to serve on the LAF Steering Committee. They and Gilda’s Club Quad Cities have moved this LAF survivorship planning grant into a LAF mentorship implementation grant. We hope this report sheds new light on survivorship knowledge, needs, services and gaps in Iowa. Thank you all for your time, talent, energy and insight into helping Iowans Living Beyond Cancer AND Thriving Through Survivorship! Patient and Family Resources IG IDPH – CCC Staff Lance Armstrong Foundation Theresa Allen Keri Mercer Mary Ellen Carano Bridget Richmond Kathleen Fleming Michael Murray Kellee McCrory Karen Packer Wendy Sontag Melissa Wright Joan Felkner Kim Ivester Jolene Carver Sara Comstock Sarah Kitchell Jill Myers Geadelmann Holly Smith Kathryn Sprecher Schlonge Dermody Jennifer Long Amy Nunn Sue Potts LAF Steering Committee Ann Jones Carol Frazell Bianca Wolf Bonni Newton Anita Shaft Channon Timm Chris Bries Cara Duffy Dale Siska Darvi Fauble Mary Brown Elizabeth Hendrix Linda Muller Christine Carpenter Francie Crawford Karen Buechler Eric Fischer Kristie Roe Lori McFate Lorna Johns Mary Jane Fitch ••• Mary Jo Albee Michael Lin Michelle Juehring Nancy Andreesen Patricia Hendricks Paul Thomsen Tami Liston Teddy Crawford Tracey Jurgensmeier Margo Jerrick •••••••••••••••••••••••••••••••••••• This is dedicated to the thousands of cancer survivors and their families and friends across the state of Iowa. • • • •••••••••••••••••••••••••••••••••••• •••••••••••••••••••••••••••••••••••• Iowans Living Beyond Cancer: Thriving Through Survivorship History The Iowa Consortium for Comprehensive Cancer Control (I4C) was formed in 2001 to coordinate the efforts of those fighting cancer in the state of Iowa. Its mission is to “work together to conquer cancer” through the implementation of projects dealing with cancer prevention, screening and early detection, treatment, survivorship and research. The I4C consists of over 100 individuals representing 50 agencies and organizations— including researchers, legislators, insurance companies, health-care providers, faith-based organizations, hospice, cancer centers, cancer survivors, health systems, voluntary health organizations, state and local public health agencies, schools and others agencies with interest in cancer control. The I4C’s work is directed by the Iowa Comprehensive Cancer Control Plan, entitled Reducing the Burden of Cancer in Iowa: A Strategic Plan for 2006-2011. One of plan’s goals is to “assure that the quality of life for every cancer survivor is the best it can be.” The I4C’s Patient & Family Resources Implementation Group (IG) concentrates its efforts on the survivorship and quality of life strategies of this plan. Members of this IG include representatives from the American Cancer Society (ACS), Gilda’s Club Quad Cities, the Leukemia & Lymphoma Society (LLS), the National Cancer Institute’s (NCI) Cancer Information Service, the Holden Comprehensive Cancer Center at the University of Iowa, the Bliss Cancer Center at Mary Greeley Medical Center, and other cancer treatment facilities and resource centers. In 2006, the Patient & Family Resources IG implemented a Lance Armstrong Foundation (LAF) Planning Grant, called the Iowa Cancer Network for Follow up Care & Support. For this grant, the IG planned and facilitated a series of forums in 11 cities across the state to hear from survivors what they needed to improve their quality of life. The survivors’ responses led to the development of this Iowa Cancer Survivorship Plan and a steering committee to guide it. The following report and plan are the outcome of these efforts. • • • •••••••••••••••••••••••••••••••••••• of screening and early detection services, as well as new research innovations in cancer care and treatment have improved the outcomes for cancer survivors. Currently, it is estimated 66% of adults and around 80% of children survive five years after diagnosis. What is Cancer Survivorship? The American Cancer Society estimates that cancer affects one in three individuals in their lifetime, either through their own diagnosis and treatment or through that of a friend or a loved one. According to the National Coalition for Cancer Survivorship, from the moment of diagnosis through the balance of life, an individual diagnosed with cancer is a survivor. Recognizing that family members, friends, and caregivers are also impacted by the survivorship experience, they are survivors as well. Other cancer survivorship facts: How many cancer survivors are there? The National Cancer Institute estimates there are 10.5 million cancer survivors now alive five years after their diagnosis. Increased cancer prevention, higher utilization • • • The majority (61%) of cancer survivors are aged 65 and older; An estimated one of every six people over age 65 is a cancer survivor; Seventy-nine percent of childhood cancer survivors will be living five years after diagnosis and nearly 75% will be living 10 years following diagnosis. Source: CDC and NCI Estimated Number of Cancer Survivors in the United States from 1971 to 2003 12,000,000 1 in 2 men 1 in 3 women Number 10,000,000 Will Willbe bediagnosed diagnosedwith withcancer cancer 8,000,000 6,000,000 4,000,000 66% of adults survive 2,000,000 93 19 95 19 97 19 99 20 01 20 03 91 19 89 19 87 19 19 85 83 19 19 81 79 19 19 77 75 19 73 19 19 19 71 80% of children survive Year Data source: NCI Division of Cancer Control and Population Sciences: Retrieved from http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html#survivor on March 28, 2007. • • • •••••••••••••••••••••••••••••••••••• Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Site (N = 10.5M) 23% 17% Female Breast Other 3% Lung 6% Melanoma 7% Hematologic (HD, NHL, Leukemia) 19% Prostate 6% Other GU (Bladder & Testis) 9% 10% Gynecologic Colorectal Data source: NCI Office of Cancer Survivorship: htttp://cancercontrol.cancer.gov/ocs/ Iowa’s Cancer Survivors The Iowa Cancer Registry estimates there are 100,000 61. 7% cancer1993-97 survivors currently in the state. These survivors 56.3% 1988-92 are strong and resilient; the graphs below denote the 1983-87 48.0% change in 5-year relative survival rates for males and 1978-82 44.6% females. 5-Year Relative Survival Rate, All Sites, Females, All Ages 5-Year Relative Survival Rate, All Sites, Males, All Ages Years This group 0% is also hopeful about 60% their future willing 20% 80% and 40% 100% Percent to help others. The 2007 LIVESTRONG™ Survey for Post-Treatment Cancer Survivors showed 95% of Iowa survivors who completed the survey appreciated life more because of having cancer. Over 80% felt cancer helped them recognize what is important in life. However, the survey showed 57% of Iowa cancer survivors wished they had more follow-up support after completing treatment. On a positive note, 67% of respondents say they have helped others through their cancer experience and 89% say they would like to do more to help other survivors. 1973-77 40.0% 1993-97 Years 59.3% 1978-82 57.0% 1973-77 20% 40% 60% 48.0% 1983-87 1978-82 44.6% 1973-77 55.7% 0% 56.3% 1988-92 80% 40.0% 0% 100% Percent 20% 40% 80% 60% Percent Graphs from the State Health Registry of Iowa, Iowa Cancer Registry http://www.public-health.uiowa.edu/shri/ 1993-97 1988-92 • • • Years Years 1983-87 61. 7% 1993-97 64. 0% 62.7% 1988-92 1983-87 1978-82 1973-77 64. 0% 62.7% 59.3% 57.0% 55.7% 100% •••••••••••••••••••••••••••••••••••• Statewide Survivorship Forums In order to address the needs of the growing number of survivors in the state, the Iowa Department of Public Health (IDPH) - Iowa Comprehensive Cancer Control Program applied for a one year planning grant from the LAF in 2006. The LAF funded the project and the Iowa Cancer Network for Follow-up Care & Support was created. For this grant, the Patient & Family Resources Implementation Group of the I4C planned and facilitated a series of forums in 11 cities across the state to hear from survivors what they needed to improve their quality of life. Appendix A shows the invitation distributed through our I4C network. The grant allowed IDPH and the I4C to take a comprehensive look at cancer survivorship by broadening the network of cancer stakeholders, conducting a statewide assessment of survivorship activities/services and developing a plan to address gaps and unidentified needs. survivor Mary Jo Albee of Marshalltown. She spoke of her experiences in cancer treatment and survivorship. After a brief introduction of the project and its key partners, the forum facilitators broke off into separate discussions about what participants felt cancer survivors needed to have to live a full and healthy life. During the discussion, facilitators and/or an assistant recorder noted comments and helped organize them into broader categories. After the discussion ended, participants traveled around the room and ranked their priorities using stickers. This collaborative process ensured each survivor ranked the importance of the comments they made during the discussion. These comments and the resulting priorities are listed in Appendix B. Members of the Patient & Family Resources IG of the I4C and other I4C partners facilitated the discussions, using a facilitation guide developed by the project team. The facilitators were trained during a conference call the week before the forums. Materials used at the forums were mailed to all facilitators including sign in sheets, demographic information sheets, information packets, handouts and additional resources. The forums were held on January 25, 2007 in Council Bluffs, Creston, Davenport, Des Moines, Dubuque, Fort Dodge, Iowa City, Mason City, Ottumwa, Sioux City, and Waterloo. These multiple sites linked via the Iowa Communications Network (ICN) so that all participants could hear the opening welcome and introductions. The forums were kicked off by keynote speaker and cancer LYON OSCEOLA DICKINSON WINNEBAGO EMMET WORTH MITCHELL HOWARD Mason City SIOUX O’BRIEN CLAY PALO ALTO CHEROKEE BUENA VISTA POCAHONTAS KOSSUTH WINNESHIEK HANCOCK CERRO GORDO FLOYD WRIGHT FRANKLIN BUTLER CHICKASAW HUMBOLDT PLYMOUTH Sioux City IDA Dubuque Waterloo GRUNDY HAMILTON WEBSTER CALHOUN SAC CLAYTON FAYETTE BREMER Ft. Dodge WOODBURY ALLAMAKEE DELAWARE BUCHANAN BLACK HAWK DUBUQUE HARDIN JACKSON JONES MONONA CRAWFORD CARROLL STORY BOONE GREENE MARSHALL BENTON TAMA Des Moines HARRISON SHELBY AUDOBON POLK DALLAS GUTHRIE LINN Iowa City POWESHIEK JASPER IOWA CLINTON CEDAR SCOTT JOHNSON MUSCATINE Council Bluffs POTTAWATTAMIE CASS MADISON ADAIR MARION WARREN Creston MILLS MONTGOMERY ADAMS UNION KEOKUK MAHASKA WASHINGTON LOUISA Ottumwa CLARKE LUCAS MONROE WAPELLO JEFFERSON HENRY FREMONT PAGE TAYLOR RINGGOLD DECATUR WAYNE APPANOOSE DAVIS VAN BUREN LEE • • • Davenport DES MOINES •••••••••••••••••••••••••••••••••••• Forum Participants There were 63 participants spread throughout the forum sites. Creston did not have any participants. General forum participant demographic information is listed below: • 50 women, 79% ; 13 men, 21% • 60 Caucasian, 95%; 1 Asian, 1.6% and 1 Other, 1.6%; 1 did not identify • 6 < age of 30, 9.5%; 11 age 31-40, 17.25%; 13 age 41-50, 21%; 14 age 51-60, 22%; 8 age 61-70, 13%; 11 age 71+ , 17.25% Forum Results These forums showed cancer survivors in Iowa face unique issues. As residents of a rural state, Iowa’s survivors may have difficulty connecting with other cancer survivors who face similar issues. A major theme discussed at these forums was cancer survivors’ need for psychosocial support. Survivors repeatedly spoke about the need to be connected with other peers who have experienced what they have, who have “traveled the road” of survivorship and can provide additional support, advice, and information as they navigate their own cancer journey. While there are many active groups that provide support to cancer survivors, there are some cancer survivors that feel left out. Survivors report barriers such as time and distance keep them from accessing necessary support services; others feel the groups they visited did not discuss issues that were pertinent to them. One young man voiced his concern that all support groups he attended targeted older female breast cancer survivors. He was unable to find someone with a similar diagnosis or age, and with issues, questions, and challenges that matched his; therefore he was unable to find the support he needed. Survivors also reported they often do not know the right questions to ask and can be overwhelmed by the wealth of information that is presented by their healthcare providers. With trained mentors providing individualized support, cancer survivors will have a guide walking alongside them as new questions and concerns arise. This need is echoed in the National Action Plan for Cancer Survivorship and the President’s Cancer Panel 20032004 Report, Living Beyond Cancer, which emphasizes the value of being matched with a “cancer guide” who can “help collect and explain information and assist the patient and family in coping and undertaking initial steps in the care process.” Steering Committee and Next Steps As a result of these forums, a steering committee was formed to provide guidance and help create the Iowa Cancer Survivorship Plan. This group consists of 15 participants who were interested in continuing their participation with the project. The steering committee first met on April 12, 2007, to discuss the forum results. They also began to form strategies to address the needs and ranked priorities identified at the community forums. This draft plan is included as Appendix C. The steering committee will continue to refine this plan in the future. Though the Cancer Survivorship Plan is still in development, the Steering Committee moved forward with a project related to these activities. Since a major theme of survivors’ responses at the forums was a lack of individualized psychosocial support, the group decided to focus on a project that addressed that need. Consequently, the Patient & Family Resources Implementation Group of the Iowa Consortium for Comprehensive Cancer Control (ICCCC) applied for a two year Implementation Grant from the Lance Armstrong Foundation. The project, Iowa Cancer MAPS (Mentors Assisting & Preparing Survivors), will pilot an individualized peer mentorship program for cancer survivors and/or their loved ones who are searching for psychosocial support that fits their specific needs. This program will match these survivors with mentors—“veteran” cancer survivors—who have been trained to provide emotional, • • • •••••••••••••••••••••••••••••••••••• educational, and social support. This patient navigation program will empower both mentors and mentees to take an active role in their cancer treatment and survivorship by helping each to “Live Strong” and walk together along the cancer journey. This project’s many partners include the American Cancer Society, Gilda’s Club Quad Cities, the Iowa Department of Public Health - Comprehensive Cancer Control Program, the NCI Cancer Information Service, the Leukemia & Lymphoma Society, cancer treatment centers and cancer survivors. Iowa Cancer MAPS is truly a statewide effort that will help cancer survivors navigate their way through the unfamiliar terrain of life after cancer. The letter of intent for this project is included in this report in Appendix D. In October 2007, the LAF notified Gilda’s Club Quad Cities (the fiscal agent), the MAPS project was approved and funded for a 2 year implementation grant. Survivorship Services in Iowa To assess and update cancer services/resources available in Iowa, the project team developed an online survey. Several 14C members personally contacted and asked 15 American College of Surgeons (ACoS)/cancer hospitals to complete the survey online. Nine of the 15 eligible hospitals completed the survey. Appendix E details their responses. Appendix F is a list of selected resources used for this report. • • • •••••••••••••••••••••••••••••••••••• APPENDIX A — INVITATION Iowans Living Beyond Cancer: Thriving Through Survivorship You are cordially invited to join the discussion, share your views and make an impact on the quality of life for Iowa’s cancer survivors. January 25, 2007 3:00-4:30 p.m. Please plan to attend at the location most convenient for you listed below. Sponsored by the Iowa Department of Public Health – Comprehensive Cancer Control Program This meeting is made possible by the Lance Armstrong Foundation. ...working together to conquer cancer. Council Bluffs – Iowa Western Community College, 2700 College Rd., Looft Hall, #024 Creston – Southwestern Community College, 1501 W. Townline Rd., Room #107 Davenport – Eastern Iowa Community College, 326 W. 3rd St., Kahl Educ. Center, Room #300 Des Moines – Lucas State Office Building, 321 E. 12th St. in ICN Room, 6th Floor Dubuque – Carnegie-Stout Public Library, 360 W. 11th St. – as Reference Desk for directions Fort Dodge – Trinity Regional Hospital, 802 Kenyon Rd., ICN Room Iowa City – Iowa City Public Library, 123 S. Linn St., Meeting Room D Mason City – North Iowa Community College, 500 College Dr., Room #106 Ottumwa – Ottumwa Regional Health Center, 1003 Pennsylvania Ave., Conference Room A Sioux City – Trospar-Hoyt County Services Bldg., 822 Douglas St., ICN Room, 4th Floor Waterloo – Hawkeye Community College, 1501 E. Orange Rd., Room #110 Please RSVP to Sarah Kitchell, Partnership Program Coordinator 319-356-4285 or [email protected] by January 18, 2007 with your name, address, email address, telephone number and the ICN location you plan to attend. We HOPE to see you there! • • • •••••••••••••••••••••••••••••••••••• APPENDIX B FORUM RESPONSES Education Audience: Cancer survivors, caregivers, health care providers, decision makers, general public # of votes Comment Categories • Type of information: Side effects of treatment............................................................................. 27 Fatigue Sexuality Managing side effects Risks/benefits of different treatments e.g., side effects, Quality of Life (QoL) Nutrition • Quality of Information................................................................................................................. 24 Age-appropriate Gender-appropriate (men’s information) Consistency Understandable Individualized Amount—often overwhelming, need filter When information is received, timing Accuracy Delivery: sensitivity of physicians, cultural competence • Type of information: Follow-up care, late effects, recurrence...................................................... 17 • Type of Information: Benefits, insurance, etc............................................................................... 11 FMLA policies at workplace COBRA, other insurance coverage What services insurance covers—complementary services, prosthesis Disability benefits • Type of Information: Coping....................................................................................................... 11 Coping, spirituality How to talk to children Role as a survivor: everything has changed Caregivers • Type of Information: Treatment, clinical..................................................................................... 11 Current research/participation in clinical trials Prevention/Risk to self, children Complementary therapies • Type of Information: Knowledge of existing resources in community.......................................... 10 Support groups • Access to Information................................................................................................................... 8 Internet Small towns lack of information, lack of access to cancer resource centers and to Internet • Knowledge/what questions to ask................................................................................................. 7 • 10• • •••••••••••••••••••••••••••••••••••• Services Audience: Cancer survivors, caregivers, friends/family # of votes Comment Categories • Psychosocial Support..................................................................................................................... 27 Support groups for patients Support groups for families, caregivers Spiritual support (church groups) One on one mentorship with others with similar treatment/diagnosis Support for rarer cancers Lack of young adult support systems Men’s cancer groups • Care Coordination & Planning..................................................................................................... 17 (treatment coordination, navigation, case management) Follow up care with patient & primary care provider Navigator during treatment, transition • “Quality of Life” services.............................................................................................................. 12 Exercise, nutrition, lymphedema care, complementary therapy (yoga, massage) Camps Discounts at local restaurants Financial counseling Child care Gyms, rehabilitation Survivor reunions “After care” for recovering patients (errands, home health services) • Transportation................................................................................................................................ 6 Road to Recovery volunteers • Pain Management, managing side effects........................................................................................ 4 • Screening/Preventive Services for Survivors..................................................................................... 2 Survivorship care clinic ● • 11• • •••••••••••••••••••••••••••••••••••• Advocacy/Empowerment Audience: Cancer survivors, friends/family/caregivers, decision-makers, government officials, insurance companies, workplaces/employers Comment Categories # of votes • Insurance......................................................................................................................................55 Concern over future insurability, loss of insurance Out of pocket expenses/ high deductibles, poor reimbursement Maze navigation: paperwork, difficult forms, replication Coverage for complementary services, prostheses, lodging, gas Cost of medications (not covered, too high) Stress/anxiety as a result Obtaining life insurance Education to insurance companies about effectiveness of covering preventive services • Access to treatment, screening/preventive care...............................................................................17 Coverage for uninsured Wait times, scheduling Physical space (parking) • Workforce......................................................................................................................................18 Loss of benefits or income due to cancer treatment Stigma/discrimination by employer or colleagues Added stress during treatment Accommodation at work during treatment • Empowering Survivors...................................................................................................................28 Identity Survivorship acceptance/affirmation Informed decision-making Advocates/family assistance • Public Understanding/Other...........................................................................................................14 Discrimination/stigma/curiosity Smoke-free environments/other risks Disability assistance • 12• • •••••••••••••••••••••••••••••••••••• APPENDIX C STEERING COMMITTEE RESPONSES AND DRAFT STRATEGIES FOR THE IOWA CANCER SURVIVORSHIP PLAN Education/Awareness: Type, Quality, Access In the forums, survivors said they needed: • Information about side effects of treatment –Fatigue, sexuality, management of side effects, nutrition • Information quality – Age, gender, culturally appropriate materials; consistent, accurate & understandable; manageable amount and at an appropriate time • Information about follow-up care, late effects, and recurrence • Information about insurance/workplace benefits and disability • Information about coping, spirituality, family interaction • Information about treatment • Information about resources in their communities • Access to information, especially in smaller towns • Knowing what questions to ask Steering Committee Responses: Additional items of importance • Appropriate timing of information is important –Receiving the bulk of the information up front is not always appropriate. People may feel overwhelmed. –Need information at different points along care journey –Need information in different ways/formats (learning styles) –Need information repeated • Information received at appropriate times may ensure patient is more receptive, especially with information pertaining to: –Fertility –Genetic Tests –Clinical trials—availability and accessibility • Information may be more accessible if delivered by a mentor/peer –Social interaction, nurturing/supportive, “partner in the process,” someone who has walked a similar journey, friendship/connections • Attitude/outlook is important to survival; understanding that it is okay to throw yourself a “pity party” once in awhile—it is better to deal with emotions and work through them than deny them. Also, there is a lot of value to surrounding oneself with positive people. • There is some confusion about “navigators”—it is a term used by many different people and there are no uniform criteria or consistency of follow-up, etc. • Patients don’t know what they don’t know—knowing what questions to ask is difficult • Coordinated referral to support/auxiliary services is not consistent within and among treatment facilities. Some patients are not “plugged into” all referral services such as nutrition services and/ or support groups. • Caregivers are often left out of the equation—they are sometimes the “information brokers” and have a better perspective on what the patient needs. Often the patient is too overwhelmed or affected by treatment to know what their informational needs are. This can be true for other loved ones, such as a spouse and/or adult children (who can often live out-of-state). • Patients can be frightened of discussions of palliative care since that can signal “hospice”or “giving up” to them. Working on definition/understanding of palliative care so that people under- stand it addresses QoL and comfort during and after treatment. • 13• • •••••••••••••••••••••••••••••••••••• STRATEGIES: Education/Awareness The overarching theme for this section was “information for the patient on their own terms.” This encourages a patient-centered approach where the patient is in charge. Strategy 1: Information “inventory” that monitors the patient’s needs and tracks their progress. Identifies areas of need and allows for individualized information/education. Additional informataion: Helpful to discuss these needs outside a clinical setting; done by someone who is not a healthcare provider, but is trained and/or certified (volunteer/mentor/employee?). Can also be done by a care coordinator, nurse coordinator, and/or navigator. Strategy 2: A “distress thermometer” to determine patient’s psychosocial needs and identify what resources/information are necessary and connect to resources as appropriate. Adapt to needs, conduct periodically in order to reconnect. Adapt for caregivers, loved ones and family. [could be coupled with #1] Additional information: A tool was developed by National Comprehensive Cancer Network (NCCN) in cooperation with the ACS. Find the tool at: http://www.nccn.org/patients/patient_gls/_english/ _distress/contents.asp Strategy 3: Mentor/additional level of support that offer another partner in care (volunteer trained/ certified?). Could also be navigator model for consistency and care coordination. Strategy 4: Orientation sessions, classes, workshops for newly diagnosed. “Survivorship University.” It could be modeled on diabetes classes (teaching about side effects, dealing with your cancer). Additional information: There are currently symptom management classes offered in Des Moines, and survivorship classes are being planned at the University of Iowa, Holden Comprehensive Cancer Center. Strategy 5: Coordinated, consistent referral to services/resources within and outside a patient’s treatment facility. Strategy 6: Information packets appropriate for caregivers, adult children, spouses. Strategy 7: Information sharing that gives information to the patient at different times throughout treatment. • 14• • •••••••••••••••••••••••••••••••••••• Services/Resources: Psychosocial Support, Coordination of Care, Quality of Life/Side effects In forums, survivors said they needed: • Psychosocial support –Support groups, particularly for men, young adults, and rarer cancers, spiritual support, mentorship • Care coordination & planning –Follow-up care, navigation of treatment • Services to improve quality of life and managing side effects –Exercise, nutrition, lymphedema care, complementary therapies, camps, discounts at stores, financial counseling, child care, “after care,” reunions, physical rehabilitation • Access to transportation • Pain management services • Screening/Preventive services –Survivorship clinic Steering Committee Responses: Additional items of importance • • • • • • Palliative Care services are important; help patients realize that they are not only hospice services, but can improve QoL Connect patients to good resources and giving credible/accurate/up-to-date information to access them Offer caregiver resources, respite opportunities Offer a family component—counseling about cancer risk, prevention Help people “Live Strong” from diagnosis on—helping them realize it is important to do “normal” things like hobbies and spending time with friends. Discouraging a “cancer-centric” world view, so cancer does not take over their life Offer post-treatment resources—especially important—when there is finally space and “emotional energy” to deal with some of the fears and finally process information. Offering services at this time would be effective and helpful. STRATEGIES: Services/Resources The overarching theme for this section was connecting people to existing resources—being careful not to duplicate existing services, but to better coordinate services and connect people to those resources. Strategy 1: Connect survivors to existing services; expand an up-to-date list/directory of resources on the Web site. Strategy 2: Offer an exercise/rehabilitation program similar to cardiac rehabilitation for cancer survivors which would provide wellness, nutrition, and physical activity counseling. Additional Information: Gilda’s Club currently has an exercise room in their facility with weight machines, trainers, and other counseling available. This is popular because many people do not feel comfortable going to the gym, do not have time, and do not know what to do to exercise. Strategy 3: Create a one-page summary on cancer (specific to each type of cancer) that would list the five most important points and additional resources. Strategy 4: Encourage development of notebook/template of information/resources given to cancer patients during and after treatment. Include information and referrals to services in their community. Collect best practices from treatment facilities doing similar projects to create a template for other facilities. • 15• • •••••••••••••••••••••••••••••••••••• Additional Information: Access online and offline resources, tie-in with inventory of informational needs referenced earlier. Keep information and referrals consistent. Use distress scale as well? Include information about post-treatment resources. Strategy 5: Offer exercise groups, social support as well as prevention and wellness education for cancer survivors. The Wellness Community is one possible model to follow. Additional information: There is a walking group program in Ames where participants’ physical changes are monitored (blood pressure, etc). Strategy 6: Offer an “exit interview” for cancer survivors as they leave treatment. Sharing next steps, preparing for post-treatment, assessing of needs, connecting to resources and addressing concerns/ anxiety. • 16• • •••••••••••••••••••••••••••••••••••• Advocacy/Empowerment: Insurance issues, Access to treatment, Workplace Issues, Empowerment, Public Understanding In forums, survivors said they needed: • Assistance with insurance issues –Future insurability, out-of-pocket expenses/high deductible, amount of paperwork, replicated forms, confusing forms, coverage for services such as lodging and gas, cost of medications too high/not covered, stress & anxiety due to insurance concerns, inability to get life insurance, difficulty getting preventive services • Access to treatment & screening/preventive care –Coverage for uninsured, wait times/scheduling, space • Assistance with issues in the workplace –Loss of benefits, stigma/discrimination, added stress, accommodation during treatment • Empowerment as cancer survivors –Identify, accepting/affirming survivorship, informed decision-making, advocates/family assistance • Information for the public and to create a better environment –Addressing public stigma and/or curiosity, smoke-free environments, disability assistance/ accommodation Steering Committee Responses: Additional items of importance • • • • • Physician/healthcare provider interaction with patient is important because the health care provider is working for them. Patients need to know they can ask for a second opinion or request a new provider when there is a difference in personality. Treatment and survival are most important—the patient and the provider are working together in a team (informed decision-making). Patient advocates can be caregivers, friends, family, or the patient themselves. Help train/teach advocates to walk alongside patients on their journey. Patient Assistance programs exist, but connecting patients to them is often difficult and navigating the requirements/procedures can be cumbersome. The elderly often have trouble navigating insurance benefits/coverage, especially knowing how to find answers. Insurance is very complex and patients often can get derailed. It feels like a “battle” to get past unclear or confusing messages. Financial planning/orientation to financial issues, important as they are, may not have been addressed or are only addressed during and after treatment. STRATEGIES: Advocacy/Empowerment The overarching theme for this section was empowering the patient; helping them find their voice and realize they can be in charge to advocate to improve their quality of life or the lives of others. Strategy 1: Encourage “cancer teams” at insurance companies and best practices for assisting cancer patients and families. Educate insurance companies to understand barriers/difficulties cancer patients face. One potential model could be Principal Financial. Strategy 2: Offer financial counseling for cancer survivors. Many have drained their life savings and need to know what to do for retirement, college savings, children, etc. Strategy 3: Encourage the “CEO Gold Standard” for employers for cancer care. Work with large employers/health plans to improve cancer experience. Potential models include the CEO Roundtable by C-Change and Wellmark/Farm Bureau colorectal cancer screening. • 17• • •••••••••••••••••••••••••••••••••••• Strategy 4: Encourage insurance companies and large employers to promote wellness and cancer prevention in the workplace. Strategy 5: Participate in forums with the Health Access Partnership, promoted by ACS in the initiative announced by John R. Seffrin, CEO of ACS last spring. • 18• • •••••••••••••••••••••••••••••••••••• APPENDIX D: LETTER OF INTENT FOR IOWA CANCER MAPS Organization: Gilda’s Club of the Quad Cities Project Title: Iowa Cancer MAPS (Mentors Assisting & Preparing Survivors) Grant Type: Implementation Subject Area: Emotional Support, Practical Issues of Survivorship NARRATIVE: The Iowa Consortium for Comprehensive Cancer Control (ICCCC) was formed in 2001 to coordinate the efforts of those fighting cancer. The Consortium consists of 100 individuals representing 50 agencies and organizations across Iowa. In 2006, the ICCCC’s Patient & Family Resources Implementation Group partnered with the Iowa Department of Public Health to develop the Iowa Cancer Network for Follow-up Care & Support, funded by a Lance Armstrong Foundation planning grant. As part of that project, the Implementation Group organized a series of forums in 11 cities throughout Iowa to hear from cancer survivors, caregivers, and health care professionals regarding what survivors need to live a full and healthy life. These forums led to the development of a steering committee and an Iowa Survivorship Plan. A common theme discovered was cancer survivors’ need for emotional support through a direct connection with another survivor with similarities such as age, gender, cancer diagnosis and treatment. Cancer survivors emphasized the importance of being matched with another survivor. To address this unmet need in Iowa, the Patient & Family Resources Implementation Group and its fiscal agent, Gilda’s Club Quad Cities, propose to develop the Iowa Cancer MAPS (Mentors Assisting & Preparing Survivors) Project with a two-year Implementation Grant from the LAF. TARGET COMMUNITY: According to the Iowa Cancer Registry, over half of those diagnosed with cancer survive it. With longer survival rates, it is imperative to develop programs and services that enhance the quality of life for those faced with a cancer diagnosis and their loved ones. This project aims to connect cancer survivors and caregivers with one another to assist them in coping with the emotional and practical issues in learning to live with cancer. The Iowa Cancer MAPS Project will target survivors and family members who have identified the need to be matched with a mentor according to their individual requirements. NEED: Cancer survivors in Iowa face unique challenges. As residents of a rural state, survivors have difficulty connecting with other cancer survivors who face similar issues. In the Survivorship Forums survivors repeatedly spoke about the need to be connected with other survivors as a system of support as they navigate their cancer journey. Cancer survivors acknowledged that there are support groups available, but that the existing groups do not always provide the type of support they require or are not accessible to them due to where they live and/or receive treatment. One young man voiced his concern that all support groups he attended seemed to target older female breast cancer survivors. He was unable to find someone with a similar diagnosis, similar age, and with issues, questions, and challenges that matched his and therefore was unable to find the support he needed. This need is echoed in the National Action Plan for Cancer Survivorship and the President’s Cancer Panel 20032004 Report, Living Beyond Cancer, which emphasizes the value of being matched with a “cancer guide” who can “help collect and explain information and assist the patient and family in coping with the diagnosis and undertaking initial steps in the care process.” • 19• • •••••••••••••••••••••••••••••••••••• PROGRAM DESIGN: The Iowa Cancer MAPS Project will address both emotional and practical issues of survivorship. The project team will create a statewide network of cancer survivor mentors not to be limited by geographic location or other specific circumstances. Mentors will be recruited, trained, and supported by the project team. The mentor program will then be promoted to cancer patients and families with the assistance of ICCCC partnering organizations and cancer centers. This project will take place over two years with development of training and recruitment materials in year one and a pilot of the mentoring project in two communities in year two. Partners: From the outset, cancer survivors have guided this project and will provide assistance throughout its implementation. This project is based upon input from cancer survivors collected through the Iowa Cancer Network for Follow-up Care and Support, a project funded by the Lance Armstrong Foundation in 2006. The network of cancer stakeholders created by that project will assist with the current proposal. The Patient & Family Resources Implementation Group (IG) of the ICCCC will implement the project. The IG has been successful because of collaborative member relationships and resources. The IG includes representatives from Gilda’s Club, the American Cancer Society, the Iowa Department of Public Health, local Cancer Centers and Cancer Resource Centers, the Leukemia and Lymphoma Society, and the National Cancer Institute. Gilda’s Club Quad Cities will act as the fiscal agent for the project. In 2003, Gilda’s Club was an LAF Community Program grant recipient, and also partnered with the LAF in 2006 to offer a Grassroots Advocacy Training program for cancer survivors living in the Quad City area. Gilda’s Club Quad Cities has been in operation since 1998, complies with annual financial audits, and successfully manages an annual operating budget of almost $400,000. GOAL: Create a statewide mentoring program for cancer survivors in Iowa that matches survivors and caregivers to others with a similar diagnosis, gender, treatment plan, and/or other characteristics and that addresses their need for individualized assistance and support. • Objective 1: Identify and assess existing mentorship programs and contact partners at cancer treatment facilities to establish potential recruitment sites. (Year 1) Activities: Contact existing programs and review materials. Outcomes: Existing materials identified and training curriculum developed. • Objective 2: Develop mentorship training program for Cancer MAPS (Year 1). Activities: Develop training materials, curriculum, conduct training, and gain input from the steering committee of the Iowa Cancer Network for Follow-up Care and Support. Outcomes: Training program developed by the end of year one. • Objective 3: Train up to 50 mentors in two communities to pilot the project (Year 1 or 2) Activities: Identify pilot sites, recruit and train mentors. Outcomes: Up to 50 mentors will be recruited and trained. Training materials and curriculum will be tested and evaluated for effectiveness with this pilot group. • Objective 4: Pair up to 50 mentors with program participants across Iowa (Year 2) Activities: Develop capacity to match and track mentors and program participants, develop recruitment plan for program participants, and develop follow up mechanism for participants. Outcomes: System developed to match and track participants; up to 50 participants recruited, and follow-up done on issues and challenges of mentors/participants with a mechanism in place to address potential issues and challenges. • Objective 5: Increase the capacity of the ICCCC’s web portal (www.canceriowa.org) to serve as a match point database for mentors/participants. Activities: Increase existing web portal capacity to hold data, enable web portal to have password protected database. Outcomes: The web portal will be used by 25% of mentors and mentees and partner hospitals will link to it. • 20• • •••••••••••••••••••••••••••••••••••• APPENDIX E AMERICAN COLLEGE OF SURGEONS SURVEY AVAILABILITY OF SERVICES TO IOWA CANCER SURVIVORS Demographic information of survey respondents A) Name of cancer treatment facility and city: a.) Holden Comprehensive Cancer Center – Iowa City, IA b.) Mercy Iowa City – Iowa City, IA c.) John Stoddard Cancer Center – Des Moines, IA d.) Jennie Edmundson Cancer Center - Council Bluffs, IA e.) Alegent Health Cancer Center – Council Bluffs, IA f.) Mercy Medical Center - Sioux City, IA g.) Abben Cancer Center – Spencer, IA h.) Covenant Cancer Treatment Center – Waterloo, IA i.) Mercy Cancer Center – Mason City, IA 60% of the facilities surveyed responded and provided a Web site for their location. EDUCATION SERVICES: We offer this currently We do not offer this We plan to offer this within 12 mos. We refer for this 100%** 0% 0% 11% Wellness/prevention education 89% 11% 0% 0% Clinical trials education 100% 0% 0% 0% Physical activity/ nutrition education 100% 0% 0% 11% Caregiver classes 22% 56% 11% 22% Side effects education 89% 11% 0% 0% Late effects education 75% 25% 0% 0% Fatigue management 78% 22% 0% 0% Insurance education 100% 0% 0% 11% Patient library/ resource center 100% 0% 0% 0% Free cancer screenings 88% 0% 12% 0% Site-specific cancer education (i.e. breast, lung, cervix) Other (see information below) ** Facilities were able to select more than one response per question. • 21• • •••••••••••••••••••••••••••••••••••• 1.) We plan to offer survivorship classes in the next 12 months. The support groups we administer have an educational component. We also offer child life programs; long term follow-up; Smoking Teens prevention program; Bone Marrow Transplant reunion; bereavement program; the Caring Clown program; fatigue awareness; the Patient Voice Writing program; monthly cancer prevention tips; Sun Awareness program for Migrant Farm Children; weight control programs; Mindfulness Based Stress Reduction; UIHC Health for Your Lifetime community seminar series; NCI/CIS/ ICCCC Partnership Program Coordinator; Psychosocial Oncology Conference for health professional; Chemotherapy For Nurses class; Scofield Advanced Oncology Nursing Conference; weekly palliative care conferences for health professionals; Cancer Matters patient binder; around 50 health fairs annually throughout the state of Iowa; Clinical Trials staff education event; and the ICCCC web portal. 2.) Cancer Help computer (NCI information) is available on the adult oncology inpatient unit for patient and family use. 3.) Head and Neck screening is done by Dr. Hart and skin screenings by dermatologist Dr. Sand. EDUCATION SERVICES are referred to: 1.) Caregiver referrals vary – can be to local group, agency, church, etc. 2.) We refer within the hospital for many of these services--Examples: 1) We refer patients to our Health & Fitness Dept. and to our oncology dietician for physical activity/ nutrition education. 2) We refer patients to the oncology social worker for insurance education and also provide some of the education in our support services. 3.) Nurse and Family Resource Center does education. 4.) We have free screening at different times of the year and sometimes they are only offered in one of our Omaha hospitals. 5.) Women’s Resource Center at Spencer Hospital. • 22• • •••••••••••••••••••••••••••••••••••• SUPPORT SERVICES: We offer this currently We do not offer this We plan to offer this within 12 mos. 78%** 0% 22% 11% Transportation assistance 88% 0% 0% 11% Lodging assistance 33% 0% 44% 33% Cancer Survivor’s Day 56% 0% 44% 0% American Cancer Society services (I Can Cope; Look Good, Feel Better; Man to Man; Reach to Recovery; Road to Recovery) 100% 0% 0% 0% Support groups for patients 89% 0% 0% 11% Support groups for survivors 56% 0% 33% 11% Support groups for families/caregivers 67% 0% 33% 11% Support groups for children 11% 0% 67% 22% Support groups for young adults 22% 0% 67% 22% Financial assistance We refer for this Other (see information below) ** Facilities were able to select more than one response per question. 1.) We provide financial counseling; yoga for breast cancer patients; healing touch; Mindfulness Based Stress Reduction; hospital teacher for hospitalized children with cancer; financial aid for pediatric cancer patients only; an ACS Hope Lodge that will open up in the next 12 months; Team Survivor, a LAF program; participant in the Iowa Cancer MAPS program; an ACS Navigator that is expected to start in December 2007; and provide sperm banking services. 2.) Our support group for survivors is a monthly social event, not a formal group. Our children/ teenage groups are open to our patient/families, but offered in the Omaha office. Our ACS services are starting again in November, but do not offer Man to Man or Road to Recovery in this area. However, we refer men to Wings of Hope here in Council Bluffs for Prostate group or to our Man to Man Prostate Alegent group on Bergan Mercy Campus of Alegent in Omaha, Nebraska. 3.) US Too (prostate support group) we refer to Allen Hospital. • 23• • •••••••••••••••••••••••••••••••••••• SUPPORT SERVICES are referred to: 1.) We typically refer the patients/survivors to support services offered by national organizations, including the The Ulman Cancer Fund for Young Adults. 2.) Refer children to University of Iowa Hopitals and Clinics (UIHC). For teenagers we could refer to Web-based resources, such as www.cancerreallysucks.org. based in Cedar Rapids. 3.) We refer patients to the American Cancer Society for many services such as lodging assistance and rides to/from appointments/treatments. We offer some financial assistance and also refer to organizations as needed. We refer to Blank Children’s Hospital and the Child Life Therapy Dept. for support services for children. 4.) American Cancer Society Wings of Hope. 5.) ACS will at times assist with lodging. The Omaha Nebraska Survivors Day Celebration will include any Council Bluffs, Iowa survivors if they want to participate there. 6.) American Cancer Society - Sioux City Navigator Program - ACS - Sioux City and June E. Nylen Cancer Center - Sioux City. • 24• • •••••••••••••••••••••••••••••••••••• COUNSELING/THERAPY SERVICES: We offer this currently We do not offer this We plan to offer this within 12 mos. We refer for this 100%** 0% 0% 11% Spiritual counseling 89% 0% 11% 11% Grief/bereavement counseling 89% 0% 11% 11% Physical therapy 89% 0% 0% 22% Speech therapy 78% 0% 11% 22% Occupational therapy 78% 0% 11% 22% Reproductive/sexuality counseling 56% 0% 33% 22% Nutrition/diet counseling 100% 0% 0% 0% Financial counseling 78% 11% 11% 0% Genetic testing/counseling Career counseling/job search assistance 67% 0% 0% 11% 22% 56% 11% 33% Music/art therapy 11% 0% 78% 11% School reentry program 11% 0% 67% 22% Emotional counseling Other (see information below) ** Facilities were able to select more than one response per question. 1.) Pet Therapy offered at Mercy by local volunteers who have Pet Therapy credentials. 2.) We refer within the hospital for some of the things listed. COUNSELING/THERAPY SERVICES are referred to: 1.) We refer to www.cancerandcareers.org. 2.) Physician/patient determined referrals for reproductive/sexuality counseling. UIHC for genetic testing/counseling. We do not have a music/art therapy program, but have had presentations on both topics at our support groups. Career counseling is provided through local agencies. School re-entry assistance with patient’s school. 3.) We have a clinical psychologist that provides many of the services on the list. 4.) Wings of Hope. 5.) Spencer Hospital Rehabilitation Services Season’s Center / Spencer Psychiatry NW IA Counseling Associates. 6.) Genetic counseling is referred to UHIC, Iowa City, Iowa. Reproductive and sexuality counseling referred to OB-GYN and/or urology offices. • 25• • •••••••••••••••••••••••••••••••••••• OTHER SERVICES: We offer this currently We do not offer this We plan to offer this within 12 mos. We refer for this Smoking cessation 67%** 11% 11% 11% Pain management 100% 0% 0% 0% Palliative care 75% 0% 25% 0% Complementary/Alternative Services (Acupuncture, massage therapy, homeopathic care, yoga 33% 11% 33% 22% Chiropractic care 22% 11% 67% 0% Disability management 25% 12.5% 63% 0% Side effect management 100% 0% 0% 0% Lymphedema therapy 78% 0% 11% 11% Postmastectomy care 85% 0% 0% 13% Postostomy care 89% 0% 0% 11% Home care 78% 0% 11% 11% Hospice care 67% 0% 22% 22% Prosthesis fittings/assistance 75% 0% 13% 25% Other (see information below) ** Facilities were able to select more than one response per question. OTHER SERVICES are referred to: 1.) We refer patients to hospice; typically Iowa City Hospice, but also any hospice organization in the patients’ hometown. 2.) We also refer to other facilities in the area as needed. 3.) Some of the Complementary/Alternative Services are offered in our Omaha Facilities – Yoga, Tai Chi, Lebed Method, and massage are all available to our cancer patients. 4.) Spencer Hospital Physical Therapy Department. Multiple durable medical equipment companies in the area. Multiple HHC/Hospice agencies in the area. 5.) American Cancer Society program for smoking cessation or personal physician. Location in Clear Lake that does complementary therapy. • 26• • •••••••••••••••••••••••••••••••••••• APPENDIX F: SELECTED RESOURCES Cancer survivorship research and other resources at the National Cancer Institute’s Division of Cancer Control and Population Sciences: http://cancercontrol.cancer.gov/ocs/index.html. The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country and a highly respected voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors: http://canceradvocacy.org/. The Lance Armstrong Foundation unites people to fight cancer, offering information and services to help cancer survivors live life on their own terms, taking aim at the gaps between what is known and what is done in the cancer fight, and engaging people to make cancer a national priority: http://www. livestrong.org. Hewitt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC, The National Academies Press, 2005. Centers for Disease Control and Prevention and the Lance Armstrong Foundation: A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta, GA, Centers for Disease Control and Prevention, 2004. President’s Cancer Panel 2003/2004 Annual Report: Living Beyond Cancer: Finding a New Balance. Bethesda, MD, National Cancer Institute, 2004. Hewitt M, Weiner SL, Simone JV: Childhood Cancer Survivorship: Improving Care and Quality of Life. Washington, DC, The National Academies Press, 2003. • 27• • •••••••••••••••••••••••••••••••••••• This publication is made possible by a Community Program grant from the Lance Armstrong Foundation, which seeks to inspire and empower people affected by cancer. The Lance Armstrong Foundation (LAF) inspires and empowers people affected by cancer. We help people with cancer focus on living; we believe that dignity is strength, knowledge is power and attitude is everything. From the moment of diagnosis, the LAF provides the practical information and tools people with cancer need to live life on their own terms. The LAF serves its mission through advocacy, public health and research. Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the LAF is located in Austin, Texas. For more information, visit livestrong.org. December 2007 • 28• • Iowa Department of Public Health Promoting and protecting the health of Iowans Thomas Newton, MPP, REHS Director, Iowa Department of Public Health Chester J. Culver, Governor Patty Judge, Lieutenant Governor