Factors associated with childhood cancer survivors' knowledge about their diagnosis, treatment, and risk for late effects.
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.


CONCLUSIONS
This study highlights knowledge deficits in survivors, specifically regarding their risk for LE.


CONCLUSIONS
Findings can be utilized to target survivors at risk for knowledge deficits.
Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.
Iqra A
IA
Syed
Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Anne F
AF
Klassen
Department of Pediatrics, McMaster University, Hamilton, ON, Canada.|Department of Pathology and Medicine, McMaster University, Hamilton, ON, Canada.
Ronald
R
Barr
School of Medicine, Faculty of Health Sciences, Queen's University, Kingston, ON, Canada.
Rebecca
R
Wang
British Columbia Children's Hospital, Vancouver, BC, Canada.
David
D
Dix
British Columbia Children's Hospital, Vancouver, BC, Canada.
Marion
M
Nelson
Health Services Management, Ted Rogers School of Management, Ryerson University, Toronto, ON, Canada.|Ontario Pharmacists Association, Toronto, ON, Canada.
Zahava R S
ZR
Rosenberg-Yunger
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. paul.nathan@sickkids.ca.|Department of Pediatrics, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada. paul.nathan@sickkids.ca.
Paul C
PC
Nathan
D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D019359:Knowledge; D008297:Male; D009369:Neoplasms / Q000175:diagnosis* / Q000401:mortality / Q000628:therapy; D012306:Risk; D011795:Surveys and Questionnaires; D015996:Survival Rate; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
Cancer history; Cancer knowledge; Childhood cancer survivors; Late effects