Identifying barriers to cancer survivorship programs
Identifying barriers to cancer survivorship programs
Advances in cancer screening have improved both early detection of the disease and treatment effectiveness. As a result, persons who would not have survived cancer may live many years after completing a prescribed plan of cancer treatment.1 Nurses and other medical professionals should be both compelled and obligated to offer services that address the multifaceted long-term effects of the physical, emotional, and financial burden of cancer and its treatment as it affects patients beyond primary treatment.
The need for oncology nurses to be involved in investigating, identifying, and overcoming the barriers to successful cancer survivorship programs is increasingly evident by the emerging societal awareness of cancer survivorship issues. With the knowledge gained from focused research on these issues, nurses can be a catalytic force in eliminating barriers that limit active participation in survivorship programs. Currently, several models exist for structuring survivorship programs, including the Lance Armstrong Livestrong Foundation, the National Coalition for Cancer Survivorship (NCCS), and the National Cancer Institute (NCI) Office of Cancer Survivorship. These organizations offer frameworks for patient-focused interventions from which nursing can assimilate plans of care that address the unique needs of the cancer survivor.
DEMOGRAPHICS OF SURVIVORSHIP
The NCI Surveillance Epidemiology and End Results (SEER) report, Cancer Statistics Review, predicts approximately 40.77% of people born today will develop some type of cancer during their lifetime.2 Furthermore, an estimated 66% of the approximately 11.7 million people living with a diagnosed cancer in the United States at the beginning of 2007 are expected to still be alive at least 5 years after their cancer diagnosis.2 In a 2010 study, Mariotto and colleagues reported health care costs for approximately 13.8 million cancer survivors was estimated at $124.57 billion.3 Their research concluded that current incidence and survival rates are expected to increase those estimates to 18.1 million cancer survivors at an annual cost of $157.77 billion by 2020.3
Patients who survive cancer beyond treatment often experience physical, social, emotional, financial, and spiritual changes as a direct result of their cancer diagnosis and treatment. Emerging post-cancer-treatment issues increase the need for nurses to understand how these changes relate to prevention of secondary disease, as well as a focus on patient health and efforts to prevent cancer recurrence. Patients' struggle with long-term effects of chemotherapy is potentially problematic over time. Delayed effects of chemotherapy often occur months and even years after treatment.
EVOLUTION OF SUPPORTIVE CARE
Support groups typically served as the traditional modality for addressing cancer-related care issues until the early 1990s. These groups promoted emotional support and helped patients cope with the fear of dying and disease recurrence; however, they did not address other aspects of ongoing post-cancer-treatment care.4 The paradigm of studying and providing cumulative and ongoing survivorship care has emerged through public awareness and scholarly interest. Current attention from professional organizations such as the Oncology Nursing Society (ONS), the American Society of Clinical Oncologists (ASCO), and the American Cancer Society (ACS), combined with efforts by grass roots consumer organizations such as the NCCS, the Lance Armstrong Livestrong Foundation, and the Susan G. Komen for the Cure Foundation have increased public awareness and advocacy for more research of cogent and modern cancer survivorship issues.
Oncology as a specialty has evolved significantly in the last half century. Historically, educational materials on cancer and chemotherapy were not readily available, and formalized support programs were nonexistent. Cancer and survivorship advocacy has expanded to models of self-organizational and public policy advocacy.5 The Office of Cancer Survivorship, created by the NCI in 1996, has continuously tasked investigators with research that would further define and improve quality of life issues for long-term cancer survivors.6 Depression, cognitive difficulties, fatigue, aches and pains, insomnia, and decline in social function and interaction are identified as lasting and progressive effects long after the initial cancer diagnosis.7
Unrecognized barriers hinder the implementation of successful cancer survivorship programs. A survey of 399 active ONS members showed only 27% of respondents were employed in a setting that had a formal, structured cancer survivorship program.8 The most significant barriers to survivorship care programs were a lack of funding and an inability to have designated clinical time allocated for cancer survivorship programs. In addition, clinical experience in oncology had an impact on knowledge of cancer survivorship. Forty-nine percent of respondents who had less than 5 years of experience in oncology reported a lack of sufficient knowledge about cancer survivorship compared with 36% of respondents who had more than 5 years of combined nursing oncology experience.8
Efforts should concentrate on identifying the variables that prohibit successful operation of community practice-based cancer survivorship programs, as well as the variables that might discourage patient enrollment and active participation. For example, many studies focus on survivorship concerns for pediatric patients with cancer; however, consistent guidelines for adult survivors of pediatric cancers are lacking.9 This gap is not only a barrier to complete care for these patients, but also illustrates a wide practice gap between clinical research and applicable models for nursing care.