Iqra A Syed1, Anne F Klassen2, Ronald Barr2,3, Rebecca Wang4, David Dix5, Marion Nelson5, Zahava R S Rosenberg-Yunger6,7, Paul C Nathan8,9. 1. Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada. 2. Department of Pediatrics, McMaster University, Hamilton, ON, Canada. 3. Department of Pathology and Medicine, McMaster University, Hamilton, ON, Canada. 4. School of Medicine, Faculty of Health Sciences, Queen's University, Kingston, ON, Canada. 5. British Columbia Children's Hospital, Vancouver, BC, Canada. 6. Health Services Management, Ted Rogers School of Management, Ryerson University, Toronto, ON, Canada. 7. Ontario Pharmacists Association, Toronto, ON, Canada. 8. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. paul.nathan@sickkids.ca. 9. Department of Pediatrics, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada. paul.nathan@sickkids.ca.
Abstract
BACKGROUND: While most children with cancer survive their initial disease, cancer therapy places them at risk for late effects (LE). Knowledge of their diagnosis, treatment, and LE risk may motivate survivors to attend long-term follow-up care. The aims of this study were to examine knowledge of cancer history and future risks, and to identify factors associated with such knowledge, in a cohort of childhood cancer survivors. METHODS: Survivors (i.e., patients finished cancer treatment, regardless of time since completion) aged 15 to 26 years from three Canadian cancer centers were invited to complete a questionnaire that assessed knowledge of cancer history and potential LE of treatments, including five specific LE known to have considerable long-term health impact. Clinical data were extracted from hospital records and used to validate participants' answers. RESULTS: Of 250 participants, 16 (6%) were unable to name their cancer, 79 (32%) had partial or no knowledge of their therapy, and 83 (33%) were unaware of at least some of their risks for LE. Decreasing age (OR for increase in age = 1.2 (1.1-1.4)), having had a renal tumor compared to leukemia (OR = 0.3 (0.1-0.9)), and lacking knowledge about treatment (OR = 0.4 (0.2-0.9)) were associated with lack of knowledge of LE. Of the five, the most and least familiar LE was LE associated with impaired pulmonary function and risk of second malignancy, respectively. CONCLUSION: This study highlights knowledge deficits in survivors, specifically regarding their risk for LE. IMPLICATIONS FOR CANCER SURVIVORS: Findings can be utilized to target survivors at risk for knowledge deficits.
BACKGROUND: While most children with cancer survive their initial disease, cancer therapy places them at risk for late effects (LE). Knowledge of their diagnosis, treatment, and LE risk may motivate survivors to attend long-term follow-up care. The aims of this study were to examine knowledge of cancer history and future risks, and to identify factors associated with such knowledge, in a cohort of childhood cancer survivors. METHODS: Survivors (i.e., patients finished cancer treatment, regardless of time since completion) aged 15 to 26 years from three Canadian cancer centers were invited to complete a questionnaire that assessed knowledge of cancer history and potential LE of treatments, including five specific LE known to have considerable long-term health impact. Clinical data were extracted from hospital records and used to validate participants' answers. RESULTS: Of 250 participants, 16 (6%) were unable to name their cancer, 79 (32%) had partial or no knowledge of their therapy, and 83 (33%) were unaware of at least some of their risks for LE. Decreasing age (OR for increase in age = 1.2 (1.1-1.4)), having had a renal tumor compared to leukemia (OR = 0.3 (0.1-0.9)), and lacking knowledge about treatment (OR = 0.4 (0.2-0.9)) were associated with lack of knowledge of LE. Of the five, the most and least familiar LE was LE associated with impaired pulmonary function and risk of second malignancy, respectively. CONCLUSION: This study highlights knowledge deficits in survivors, specifically regarding their risk for LE. IMPLICATIONS FOR CANCER SURVIVORS: Findings can be utilized to target survivors at risk for knowledge deficits.
Entities:
Keywords:
Cancer history; Cancer knowledge; Childhood cancer survivors; Late effects
Authors: Melissa M Hudson; Wendy Leisenring; Kayla K Stratton; Nina Tinner; Brenda D Steen; Susan Ogg; Linda Barnes; Kevin C Oeffinger; Leslie L Robison; Cheryl L Cox Journal: J Clin Oncol Date: 2014-11-03 Impact factor: 44.544
Authors: Siri L Hess; Inga M Jóhannsdóttir; Hanne Hamre; Cecilie E Kiserud; Jon H Loge; Sophie D Fosså Journal: Acta Oncol Date: 2011-01-24 Impact factor: 4.089
Authors: A C Mertens; Y Yasui; J P Neglia; J D Potter; M E Nesbit; K Ruccione; W A Smithson; L L Robison Journal: J Clin Oncol Date: 2001-07-01 Impact factor: 50.717
Authors: Nina S Kadan-Lottick; Leslie L Robison; James G Gurney; Joseph P Neglia; Yutaka Yasui; Robert Hayashi; Melissa Hudson; Mark Greenberg; Ann C Mertens Journal: JAMA Date: 2002-04-10 Impact factor: 157.335
Authors: Melissa M Hudson; Ann C Mertens; Yutaka Yasui; Wendy Hobbie; Hegang Chen; James G Gurney; Mark Yeazel; Christopher J Recklitis; Neyssa Marina; Leslie R Robison; Kevin C Oeffinger Journal: JAMA Date: 2003-09-24 Impact factor: 157.335
Authors: Jacqueline N Casillas; Lindsay F Schwartz; Catherine M Crespi; Patricia A Ganz; Katherine L Kahn; Margaret L Stuber; Roshan Bastani; Faisal Alquaddomi; Deborah L Estrin Journal: J Cancer Surviv Date: 2019-07-26 Impact factor: 4.442
Authors: Jordan Gilleland Marchak; Kristy D Seidel; Ann C Mertens; Chad W M Ritenour; Karen Wasilewski-Masker; Wendy M Leisenring; Charles A Sklar; Jennifer S Ford; Kevin R Krull; Marilyn Stovall; Leslie L Robison; Gregory T Armstrong; Lillian R Meacham Journal: Cancer Date: 2018-04-17 Impact factor: 6.860
Authors: Todd M Gibson; Chenghong Li; Gregory T Armstrong; Deo Kumar Srivastava; Wendy M Leisenring; Ann Mertens; Tara M Brinkman; Lisa Diller; Paul C Nathan; Melissa M Hudson; Leslie L Robison Journal: Cancer Date: 2018-06-25 Impact factor: 6.860
Authors: Nicole L Stout; Daniel Santa Mina; Kathleen D Lyons; Karen Robb; Julie K Silver Journal: CA Cancer J Clin Date: 2020-10-27 Impact factor: 508.702
Authors: A Fuchsia Howard; Karen Goddard; Jason Tan de Bibiana; Sheila Pritchard; Robert Olson; Arminee Kazanjian Journal: J Cancer Surviv Date: 2016-01-30 Impact factor: 4.442