Ensuring Survivorship Care Services for the Growing Cancer Population
Cancer Survivors
Thanks to early detection, innovative medical treatments, and supportive care from family and friends, more than 15.5 million cancer survivors live in the United States today.1 People diagnosed with cancer are now increasingly likely to survive, with nearly 70% of patients living 5 years or more following their diagnoses.1 The number of cancer survivors is projected to increase by 31% to 20.3 million by 2026, which represents more than 4 million survivors in 10 years.1
Cancer survivorship focuses on the health and life of a person with cancer post-treatment until the end of life.2 It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get healthcare and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.2
The emerging field of cancer survivorship needs to be developed further to address the unique needs of cancer survivors.
After Cancer Treatment
For Survivors that have reached the end of cancer treatment or a milestone in their treatment, it can be a time of happiness and relief. However, many survivors often have a mix of conflicting emotions. Some are feelings of new personal strength and renewed priorities. Others are feelings of confusion and frustration with the inability to return to the self they were before their cancer diagnosis. Well-intentioned healthcare providers, friends, and family don’t always recognize or are unaware of the emotional stress and continued private struggles that survivors have. It is daunting to have a large medical network and supportive friends and family supporting you during acute cancer treatment then have it abruptly stop once treatment ends or your illness changes course.
When disease is stable or cured, survivors plan their life re-entry to work, caring for their families, wellness, and other aspects of their lives. Survivors may experience pain, fatigue, cognitive impairment, or depression as they attempt to assimilate into their prior life. Historically, follow-up services have primarily consisted of patient visits and diagnostic tests ordered by physicians. But survivorship services need to extend well beyond following-up with the physicians who managed the cancer treatment.
The Commission on Cancer (CoC)
The Commission on Cancer (CoC) is a consortium of professional organizations dedicated to improving survival and quality of life for cancer patients through standard-setting, prevention, research, education, and the monitoring of comprehensive quality of care.3 Established by the American College of Surgeons (ACoS), the multidisciplinary CoC establishes standards to ensure quality, multidiscipline-based, and comprehensive cancer care delivery, and conducts surveys in healthcare settings to assess compliance with those standards.3
The CoC supports the Institute of Medicine, National Coalition for Cancer Survivorship, and the NCI Office of Cancer Survivorship in the idea that “an individual is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life.”3
For healthcare facilities and cancer centers that are CoC accredited, Standard 3.3, Survivorship Care Plan (SCP), outlines what is expected in a patient care summary. This standard requires centers to provide resources to address the unique mental health, practical and supportive care needs of cancer survivors.3 The SCP includes a treatment summary and follow-up care plan to ensure that the survivor has knowledge on their full spectrum of care and access to resources for prevention of reoccurrence, in addition to follow-up specialty services.3 Standard 3.3 states that cancer centers should focus initial efforts for care plans to patients with “curative intent, and have completed active therapy (other than long term hormonal therapy)”.3 Although all patients should receive a plan regardless of their disease site, Standard 3.3 does not target patients with stage 0 or IV.
The CoC’s survey of accredited programs found that just 37% of responding cancer programs felt “completely confident” that their program would be able to implement Standard 3.3 by 2015. Only 21% indicated that an SCP process had been developed.4
The Accreditation Committee made the following changes to the established time frame and scope of implementation for Standard 3.3.3
Goals of Improved Survivorship Services
In the Advisory Board’s 2015 Cancer Support Services Volumes, Staffing, and Operations Survey, it was found that most programs provide survivorship plans to less than 25% of cancer survivors.4 This is far from meeting the Standard 3.3 noted above.
Breakdown of Organizations Providing Survivorship Plans5
Percentage of Survey Respondents Providing Plans Within Each Category
N=154
Providers of Survivorship Care Services
The specialty providers of survivorship services are a team of healthcare professionals focused on supporting the survivor in mind, body, and spirit. Below is a common, but not all-inclusive, list of team members:
• Skilled Nursing Home Care
• Skilled Home Care Services
• Hospice Care
• Palliative Care Services
• Mental Health Professionals:
– Psychotherapy
– Social Work
– Pastoral Care
• Rehabilitation Services:
– Physical Therapy
– Occupational Therapy
– Speech and Language Therapy
• Pain Management
• Fertility Consultation and Preservation
• Genetic Counseling
• Sleep Management
• Physician Specialists:
– Cardiologist
– Neurologist
– Endocrinologist
– Psychiatry
– Physiatry
– Orthopedics
Many healthcare facilities across the country offer survivors an opportunity in an informal or formal survivorship visit to review their cancer treatment journey to identify the survivor’s needs and triage them to appropriate team members. Appropriate referrals to these specialists help survivors return successfully to work, caring for their own needs and the needs of their families.
Each survivor, in all areas of medicine, has unique needs and the right to attain the highest quality of life possible, at any level of health, under any circumstances. Survivors desperately require and seek various specialty services to help them attain their best self, not a “new normal.”
Survivorship is simply the journey we are all on to achieve satisfaction and contentment in life despite the bumps in the road. Providers of survivorship services help cancer survivors access family, peer, and community support as well as other resources they need for coping with their disease and the after effects of their disease.
References:
1. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2016-2017. Atlanta, GA: American Cancer Society; 2016
2. Miller KD, Siegel RL, Lin CC, et al. Cancer treatment and survivorship statistics, 2016. CA: A Cancer Journal for Clinicians. 2016.
3. Commission on Cancer. https://www.facs.org/quality-programs/cancer/coc.
4. Deline M. The Advisory Board: Oncology Rounds. The CoC clarifies the survivorship care plan standard: what you need to know. April 25, 2016. https://www.advisory.com/research/oncology-roundtable/oncology-rounds/2014/09/the-coc-clarifies-the-survivorship-care-plan-standard-what-you-need-to-know. Accessed Feb. 4, 2017.
5. The Advisory Board: Oncology Rounds: 2015 Cancer Support Services Volumes, Staffing, and Operations Survey
Kristin M. Carroll is an oncology physical therapist and is the Co-Founder and Director of Clinical Operations of Survivorship Solutions, LLC., a healthcare consultancy firm, located in Hartford and Chicago.
For more information on how to integrate Survivorship Services into your community, contact us at www.survivorshipsolutions.com