Overview

Cancer survivors are those people who have been diagnosed with cancer and the people in their lives who are affected by their diagnosis, including family members, friends, and caregivers.  According to the National Cancer Institute, there are over 9.8 million Americans who have been diagnosed with cancer, living proof that having cancer is no longer a death sentence.

According to the American Cancer Society, the five-year survival rate for all cancers has increased as a result of improvements in cancer screening and treatment. Sixty-four percent of adults diagnosed with cancer today were alive five years after their diagnosis, and nearly 79% of those who had childhood cancer were alive after 10 years.

While this is remarkable progress, increased survivorship has introduced a number of challenges to cancer survivors and their families.   Survivors face many physical, psychological, social, spiritual, and financial issues throughout their diagnosis and treatment and for the rest of their lives. In addition, there is a growing need to promote health, prevent secondary disease, and ensure the well-being of long-term cancer survivors and their families.  

Because survival rates for all childhood cancers have dramatically improved over the past 30 years, there are unique issues facing childhood cancer survivors.   These include fertility, heart failure, cognitive functioning, and secondary cancers, as well other psychosocial and financial issues.  

To identify the specific needs of cancer survivors in Maine, an assessment was conducted in 2004 to answer the following questions:

• What are the cancer treatment and follow-up needs of cancer patients seeking rehabilitation and survivorship services in Maine?
• What rehabilitation and survivorship services do cancer patients use?   Are these services useful, affordable, and helpful?
• How did those living with cancer learn about these services?

The results of the survey indicated that almost half of the respondents did not use any of the 15 identified services.   When asked why they did not use a service, the majority responded that they did not have a need for the service.   This could indicate two things:   1) the rehabilitation and survivorship services currently offered are not the services cancer survivors want; or 2) those living with cancer in Maine receive support and assistance from informal networks of family, friends or co-workers.  

For those who did use rehabilitation and survivorship services, there was a wide range of usage.    For example, 15.1% of respondents used nutrition counseling, while 9.5% used transportation resources, and only 2.2% used speech therapy.   Among those who had used services, at least 75% of respondents found each of the services helpful with lodging services identified as the most helpful service for families.   A majority of respondents said that they were able to use most of the services within 30 miles of this home, a positive indicator for accessibility.   Not surprisingly, physicians were the most common referral source for almost all rehabilitation and survivorship services.

As a follow-up to the 2004 study, a series of focus groups were conducted to assess utilization of rehabilitation and survivorship services by cancer survivors in Maine.   The focus groups were   conducted with cancer survivors, providers and cancer survivor advocates/family members.   

Among the major findings from cancer survivors and advocate/family members are:

• 75% of participants learned about rehabilitation/survivorship services from hospitals/treatment centers and medical professions;
• 50% identified support groups and services for caregivers as lacking in their communities;
• 63% identified lack of knowledge of available rehabilitation and survivorship services as a major barrier;
• 88% stated that a booklet on services available in the area would have improved their access to services; and
• 38% cited problems with insurance and or no coverage for alternative care a barrier to accessing services.

Some major finds from providers are:

• 67% of providers identified pain management as a service that is not available in their area;
• 100% indicated that family concern and ability to handle and want services was the criteria they used for making referrals; and
• 100% cited personal discomfort with discussing the topic or not being ready as the major barrier to discussing survivor issues.  

Combining the knowledge gained from the Maine cancer survivors' assessment and focus groups with the guidance from A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies , there are great opportunities for systematic changes that will impact quality of life for cancer survivors in Maine.

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Priorities for Rehabilitation & Cancer Survivorship

To increase awareness and utilization of rehabilitation/survivorship services throughout Maine by 2010.

Maine and National Survivorship Resources

Link to Data

Rehab Survivorship Assessment Final

http://www.canceradvocacy.org/

Rehabilitation/Survivorship Work Group Membership

Netta Apedoe, Maine Comprehensive Cancer Control Program

Bonnie Bickford, American Cancer Society

Carol Graham-Belliveau, York Hospital

Amy Black, Maine Center for Public Health

Nadine Bullion, Cancer Care of Maine/EMMC (CHAIR)

Jani Druck, Cancer Community Center

Cheryl Tucker, American Cancer Society (CHAIR)

Donna Green, Maine Medical Center

Deborah Halbach, Maine Academy of Family Physicians

Maureen Higgins, The Leukemia & Lymphoma Society

Deanna McClure, Franklin Memorial Hospital

Michael Reisman, Beth C. Wright Cancer Resource Center

Michelle Sheldon, American Cancer Society

Judy Sweeney, New England Rehabilitation Hospital of Portland

To get involved in Maine's rehabilitation/survivorship activities, contact Nadine Bullion at 973-7476 or Cheryl Tucker at 373-3709

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