Survivorship after lower gastrointestinal cancer: Patient‐reported outcomes and planning for care

• Published in: Cancer Vol. 123; no. 10; pp. 1860 - 1868
• Main Authors: Frick, Melissa A., Vachani, Carolyn C., Hampshire, Margaret K., Bach, Christina, Arnold‐Korzeniowski, Karen, Metz, James M., Hill‐Kayser, Christine E.
• Format: Journal Article
• Language: English
• Published: United States Wiley Subscription Services, Inc 15-05-2017
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Anal cancer; Anus; Anus Neoplasms - therapy; Cancer; Cognitive ability; Cognitive Dysfunction - epidemiology; Colitis - epidemiology; Colon; Colon cancer; Colorectal cancer; Colorectal Neoplasms - therapy; Complications; Demographics; Demography; Diagnosis; Erectile Dysfunction - epidemiology; Fatigue; Fatigue - epidemiology; Female; Gastrointestinal cancer; Gastrointestinal Diseases - epidemiology; Health care; Humans; Internet; Long-term effects; Male; Middle Aged; Neuropathy; Oncology; Patient Reported Outcome Measures; patient‐reported outcomes; Peripheral Nervous System Diseases - epidemiology; Radiation; Radiation effects; Radiation Injuries - epidemiology; Radiodermatitis - epidemiology; Rectum; Reviews; Sexual behavior; Sexual Dysfunction, Physiological - epidemiology; Single-cell protein; Skin Diseases - epidemiology; Surveys and Questionnaires; Survival; Survivors; survivorship care plan; Toxicity; Urinary Bladder Diseases - epidemiology; User satisfaction; Young Adult; patient-reported outcomes; colorectal cancer; Internet; survivorship care plan; anal cancer
• ISSN: 0008-543X; 1097-0142
• DOI: 10.1002/cncr.30527

BACKGROUND
There is significant need for quality follow‐up care to optimize long‐term outcomes for the growing population of lower gastrointestinal (GI) cancer survivors. Patient‐reported outcomes (PROs) provide valuable information regarding late and long‐term effects (LLTEs).
METHODS
A convenience sample from 1129 colon, rectal, and anal cancer survivors (n = 792; 218, and 119, respectively) who participated in an Internet‐based survivorship care plan (SCP) tool between May 2010 and October 2014 was used to examine patient‐reported demographics, treatment, and toxicity data. Responses from a follow‐up survey were reviewed.
RESULTS
The median age of diagnosis was 51 years, and 81% of survivors were Caucasian. The most commonly reported LLTEs for all survivors were neuropathy, fatigue, cognitive changes, changes in GI function, urogenital and sexual dysfunction, and dermatologic effects. The prevalence of these effects varied with time since diagnosis, treatment modality, and treatment center. Individuals who had survived anal cancer reported a high prevalence of sexual dysfunction and radiation‐induced dermatologic effects. Over 87% of users reported satisfaction levels of good to excellent using the SCP tool, and 69% reported that they intend to share the SCP with their health care team.
CONCLUSIONS
For lower GI cancer survivors, it is feasible to obtain PROs from an Internet‐based survivorship tool. Survivors report a wide spectrum of LLTEs, and these can be used to inform counseling at the time of diagnosis and to help anticipate and respond to disease‐related and treatment‐related sequelae during follow‐up. The authors are among the first to report on PROs in anal cancer survivors. Further investigation on the impact of SCPs on health care communication and use is needed. Cancer 2017;123:1860–1868. © 2017 American Cancer Society.
Patient‐reported outcomes obtained from an Internet‐based survivorship care plan tool are used to report on the prevalence of perceived late‐term and long‐term effects in colorectal and anal cancer survivors. Survivors report a wide spectrum of disease‐related and treatment‐related sequelae, including neuropathy, fatigue, cognitive changes, changes in gastrointestinal function, urogenital and sexual dysfunction, and dermatologic effects; the prevalence of these effects varies with length of time since treatment, treatment modality, and treatment center.