ACEF Focus: Education of Public and Health Care Providers

The Absenger Cancer Education Foundation (ACEF) will take an active leadership role to address the needs of cancer survivors and health care providers. Our focus on education entails not only to educate the public, but also health care professionals how to safely integrate mind-body medicine into the survivorship experience.

Living with cancer as a chronic disease for many decades long after treatment as usual has ceased is now stark reality for may cancer survivors. The Absenger Cancer Education Foundation realizes this and will focus on the following five talking points as we engage the public and health care professionals.

Talking Point One: Microenvironment to Whole Person

Tumors develop in endogenous microenvironments, however, cancer advances within a person. This person however finds herself entangled in various exogenous relationships. This entanglement is termed “bioecological perspectives of cancer and cancer survivorship” by Green McDonald et al. (2013, p. S4). This entanglement then necessitates that we approach the cancer survivorship experience a little differently.

Talking Point Two: Booming Population of Cancer Survivors

Health care providers are now faced with a “…booming cancer survivor population of older adult cancer survivors, many of whom have multiple complex health conditions and unique survivorship needs” (Parry, Kent, Mariotto, Alfano, & Rowland, 2011, p. 1996).

Because the survivorship experience lasts now for decades the focus of cancer as an acute disease has shifted to cancer as a chronic disease model. Stressful life experiences and depression, research shows, might be associated with inferior survival and higher mortality across many types of cancers.

Over the next decades, we will see an increased volume of demand in services for elderly cancer survivors. The complexity of costs associated with treating older cancer survivors with concurrent chronic disease should be cause for contemplation on how cancer survivors’ needs will be met and financed.

During the 50th Annual Meeting of the American Society of Clinical Oncology (ASCO), May 30 to June 3, 2014 at McCormick Place in Chicago, Illinois this increase in elderly cancer patients was described as “…both an epidemic and a tsunami,” that “…is expected to overwhelm the health care delivery system unless significant changes are made” (ASCO, 2014).

Mind-body medicine modalities have shown promise to address the psychosocial factors associated with chronic disease. This evidence is relevant to “Wellthcare in Cancer Survivorship.” Integrating mind-body modalities in the cancer survivorship experience will be important to deal with those elderly cancer survivors’ needs.

Talking Point Three: Sickness Behavior

Sickness behavior activated by inflammation not only affects the quality of life of a cancer patient or survivor but also impinges on her close relationships (Kiecolt-Glaser, Gouin, & Hantsoo, 2010). This finding is striking because a meta-analysis by Holt-Lunstad, Smith, and Layton (2010) found that a lack of social relationships confers many of the same risks on mortality as tobacco and alcohol use. The researchers note that this also applies to poor quality relationships.

Sickness behavior and the cytokine milieu of survivors will be a primary area of research for the Absenger Cancer Education Foundation. The Medical Hypnosis and Interleukin-1 beta in Breast Cancer Survivors research that is currently on the way is the first of many such studies. Point three is paramount, because building community is part of ACEF’s larger mission.

Talking Point Four: Too Much Information

The public is drowning in health information, which, according to The National Center for Complementary and Alternative Medicine (NCCAM), is a considerable problem. NCCAM draws attention to the problem in its Third Strategic Plan (2011-2015) in which the agency states:

Although a vast amount of information about CAM [Complementary and Alternative Medicine,] is available in the public domain, much of it is incomplete, misleading, inaccurate, or based on scientifically unproven claims. Much of the public’s use of CAM occurs in the absence of advice or guidance from health care providers. (CAM, p. 14)

If we are successfully to reduce the burden of cancer in the United States, we need a resolute effort to communicate with persons in survivorship clearly and concisely. We need to develop our messages and deliver them in a way that reflect the multifaceted needs of this diverse and vulnerable group. The Absenger Cancer Education Foundation believes that Wellthcare in Cancer Survivorship is one such communication pathway that can address the multifaceted needs of cancer survivors.

Talking Point Five: Childhood Cancers

Cancer is the principal disease-related cause of death among children in the United States. The most commonly occurring children’s cancers are distinctive from most adult cancers (National Cancer Institute, 2013). The good news is that the mortality rate for all pediatric cancers combined has declined by more than 50% over the past 30 years. There is no significant difference in mortality rates between racial/ethnic groups and between boys and girls. Five-year survival rate for children diagnosed with cancer has improved from around 62% in the mid-1970s to 83% in recent years (National Cancer Institute, 2013).

The downside to these improvements in survival rate is that pediatric cancer survivors face life-long health issues. These issues include chronic conditions and secondary cancers. Of importance to the Absenger Cancer Education Foundation is addressing the needs of survivors of childhood cancer. Survivors of childhood malignancies may experience a variety of adverse psychosocial issues. Researchers believe that these issues are related to the primary cancer, its treatment, or maladjustment associated with the cancer experience (National Cancer Institute, 2013; National Cancer Institute PDQ®, 2014).

Late Effects of Treatment for Childhood Cancers

According to the National Cancer Institute (2014) many childhood cancer survivors, have negative quality of life or other adverse psychological outcomes. Much research on late effects after cancer has concentrated on persons with an occurrence of cancer during childhood. Not much research is available about the impact of a cancer diagnosis made at onset of adolescence. For example, in one study 820 female survivors of adolescent (15-18 years of age) cancers had achieved fewer age-linked milestones in their psychosexual development. The girls reached these milestones much later than a carefully matched control group (National Cancer Institute PDQ®, 2014).

Psychosocial issues in childhood cancer survivors may increase future risk for chronic health conditions and subsequent neoplasms. Because of these risks there is a need to routinely screen and address psychosocial issues after cancer therapy (National Cancer Institute PDQ®, 2014).

Psychosocial Outcomes Among Youth

The National Cancer Institute (2014) shows that psychological disorder rates of behavioral, emotional, and social adjustment among survivors of childhood brain tumors range from 25% to 93%. Central nervous system (CNS) malignancy survivors had adverse outcome indicators of successful adult adaptation (educational attainment, income, employment, and marital status). Taken together, studies assessing psychosocial outcomes among CNS tumor survivors show deficits in social aptitude. The level of social adjustment worsens over time (National Cancer Institute PDQ®, 2014).

Making matters worse for childhood cancer survivors is the prevalence of chronic health conditions. Chronic health conditions affect other facets of emotional development. Important to note is that young cancer survivors are less likely to ever marry or have children. When compared to age-matched samples, childhood cancer survivors are significantly older at their first marriage and the birth of their first child. Adolescent survivors are also significantly less satisfied with their general and health-related life (National Cancer Institute PDQ®, 2014).

The Absenger Cancer Education Foundation’s Role in Education of Public and Health Care Providers

Based on the information presented here, it seems that future health care delivery in oncology is shaped by the distinct needs of older Americans in cancer survivorship while rendering survivors in greater need of support services. After looking carefully at Institute of Medicine (IOM) recommendations, the Absenger Cancer Education Foundation plans on becoming part of the health care delivery team that can address the psychosocial issues of cancer and cancer survivorship. Our part in the delivery of health care will focus on education about mind-body medicine self-care modalities in cancer survivorship.

However, as mentioned in “Talking Point Five: Childhood Cancers,” childhood cancer survivorship must also be addressed. Evidence indicates that the mind-body modalities offered by the Absenger Cancer Education Foundation might address and deal with the psychosocial issues childhood cancer survivors face as well.

Once put into actionable steps, we believe that the vision and mission of the Absenger Cancer Education Foundation (ACEF) aid to teaching cancer survivors these mind-body modalities and their importance in self-care.

This education will augment, not replace, the biomedical model that is responsible for saving the lives of millions of cancer patients.

To adequately address the needs of cancer survivors, the Absenger Cancer Education Foundation (ACEF) will take a leadership role to educate the public about mind-body medicine modalities. We will educate not only the public, but also health care professionals how to integrate mind-body medicine safely into the survivorship experience.

References:

American Society of Clinical Oncology (ASCO). (2014, June 1). The Challenges of the Aging Population: More patients with cancer, fewer physicians, costlier therapies. Retrieved June 1, 2014, from http://am.asco.org/challenges-agingpopulation-more- patients-cancer-fewer-physicians-costlier- therapies#.U4us92qYf58.twitter

Green McDonald, P., O’Connell, M., & Lutgendorf, S. K. (2013). Psychoneuroimmunology and cancer: A decade of discovery, paradigm shifts, and methodological innovations. Brain, Behavior, and Immunity, 30, S1–S9. doi:10.1016/j.bbi.2013.01.003

Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: A Meta-analytic review. PLoS Medicine, 7(7), e1000316. doi:10.1371/journal.pmed.1000316

Kiecolt-Glaser, J. K., Gouin, J.-P., & Hantsoo, L. (2010). Close relationships, inflammation, and health. Neuroscience & Biobehavioral Reviews, 35(1), 33–38. doi:10.1016/j.neubiorev.2009.09.003

National Cancer Institute: PDQ®. (2014). Late effects of treatment for childhood cancer. Bethesda, MD: U.S. Department of Health and Human Services, National Cancer Institute. Retrieved from http://cancer.gov/can certopics/pdq/treatment/lateeffects/HealthProfessional

National Cancer Institute. (2013). NCI’s Annual Report on Complementary and Alternative Medicine(CAM)-OCCAM. Retrieved June 1, 2014, from http://cam.cancer.gov/cam_annual_report.html

National Cancer Institute. (n.d.g). Survivorship. NCI Dictionary of Cancer Terms. Retrieved June 1, 2014, from http://www.cancer.gov/dictionary?cdrid=445089

Parry, C., Kent, E. E., Mariotto, A. B., Alfano, C. M., & Rowland, J. H. (2011). Cancer survivors: A booming population. Cancer Epidemiology Biomarkers & Prevention, 20(10), 1996–2005. doi:10.1158/1055-9965.EPI-11-0729

U.S. Department of Health and Human Services, National Institutes of Health, National Center for Complementary and Alternative Medicine (NCCAM). (2011). Third strategic plan 2011-2015: Exploring the science of complementary alternative medicine. (No. NIH Publication No. 11-7643). Washington, DC. Retrieved from http://nccam.nih.gov/sites/nccam.nih.gov/files/about/plans/2011/NCCAM_SP_508.pdf