title: Survivorship after lower gastrointestinal cancer: Patient-reported outcomes and planning for care.
abstract: 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).
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Melissa A
authors.identifier: 0000-0002-2402-2728
authors.initials: MA
authors.lastname: Frick
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Carolyn C
authors.initials: CC
authors.lastname: Vachani
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Margaret K
authors.initials: MK
authors.lastname: Hampshire
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Christina
authors.initials: C
authors.lastname: Bach
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Karen
authors.initials: K
authors.lastname: Arnold-Korzeniowski
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: James M
authors.initials: JM
authors.lastname: Metz
authors.affiliation: Department of Radiation Oncology, Perelman Center for Academic Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Christine E
authors.initials: CE
authors.lastname: Hill-Kayser
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001005:Anus Neoplasms / Q000628:therapy*; D060825:Cognitive Dysfunction / Q000453:epidemiology*; D003092:Colitis / Q000453:epidemiology; D015179:Colorectal Neoplasms / Q000628:therapy*; D007172:Erectile Dysfunction / Q000453:epidemiology; D005221:Fatigue / Q000453:epidemiology*; D005260:Female; D005767:Gastrointestinal Diseases / Q000453:epidemiology; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D010523:Peripheral Nervous System Diseases / Q000453:epidemiology*; D011832:Radiation Injuries / Q000453:epidemiology; D011855:Radiodermatitis / Q000453:epidemiology*; D012735:Sexual Dysfunction, Physiological / Q000453:epidemiology*; D012871:Skin Diseases / Q000453:epidemiology; D011795:Surveys and Questionnaires; D017741:Survivors; D001745:Urinary Bladder Diseases / Q000453:epidemiology; D055815:Young Adult
keywords: Internet; anal cancer; colorectal cancer; patient-reported outcomes; survivorship care plan