Perceived Survivorship Needs of Colorectal Cancer Survivors

Background: The number of cancer survivors is estimated at 13.5 million¹, and the American College of Surgeons (ACoS) requires cancer survivorship care plans that include details regarding patients’ disease and treatments.² ACoS guidelines include aspects of the 4 components of cancer follow-up care: surveillance for recurrence, monitoring for and management of disease and treatment effects, detection of new cancers, and promotion of positive health behaviors. These components are within the physical domain of quality of life³ (QOL), leaving the psychological, social, and spiritual domains unaddressed. A gap exists between what is recommended as survivorship follow-up care and what survivors self-identify as necessary to continue survival and maintain  QOL. Colorectal cancer survivors possess unique needs relating to body image and bowel function changes. Only by asking survivors themselves will we know the scope and extent of their needs.

Objective: This study explored the perceived survivorship needs of adult colorectal cancer survivors to complete a cancer survivorship program.

Methods: Using Ferrell’s 4 dimensions of QOL3 as a framework for cancer survivorship questions, participants completed 1 interview. With institutional review board approval and informed consent for this small, qualitative study, participant interviews were recorded, transcribed, and verified. Data were coded, analyzed, and categorized into 10 topics as described by Stenginga et al.⁴ Colorectal cancer survivors revealed that a battle with cancer affected their lives negatively and positively. Needs in all 4 dimensions of QOL were identified. Survivors reported changing needs throughout survivorship, especially in education. Unique needs of colorectal cancer survivors were identified. All participants digressed from the interview questions to tell their cancer story.

Conclusions: Survivorship care plans need to move beyond current guidelines and address the physical, psychological, social, and spiritual domains of QOL. Care plans should be 1 element of a comprehensive survivorship program that includes meeting the individual changing needs of survivors. Support groups and environments for survivors to interact with other survivors and healthcare professionals, counselors, and financial advisors should be established. Cancer survivors want and need a forum to tell their story.

References

1. Cancer treatment & survivorship facts & figures. American Cancer Society Web site. http://www.cancer.org/Research/CancerFacts Figures/CancerTreatmentSurvivorshipFactsFigures. Accessed July 3, 2012.
2. Complying with 2012 ACoS COC Standards. Survivorship Forum. http://survivorshipforum.blogspot.com/2011/07/complying-with-2012-acos-coc-standards.html. Accessed July 3, 2012.
3. Ferrell B. Quality of life cancer survivor model. http://prc.coh.org/pdf/cancer_survivor_QOL.pdf. Accessed February 19, 2009.
4. Stenginga SK, Lynch BM, Hawkes A, et al. Antecedents of domain-specific quality of life after colorectal cancer. Psychooncology. 2009;18(2):216-220.