Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study

Genetics in paediatric oncology is becoming increasingly important in diagnostics, treatment and follow-up care. Genetic testing may offer a possibility to stratify survivors follow-up care. However, survivors' and parents' preferences and needs for genetics-related services are largely un...

Full description

Saved in:
Bibliographic Details
Published in:European journal of human genetics : EJHG 2020-01, Vol.28 (1), p.6-16
Main Authors: Vetsch, Janine, Wakefield, Claire E, Tucker, Katherine M, McCarthy, Maria, Signorelli, Christina, Walwyn, Thomas, Alvaro, Frank, Cohn, Richard J
Format: Article
Language:English
Subjects:
Adult
Cancer
Cancer Survivors - psychology
Child
Childhood
Children
Female
Genetic Services
Genetics
Health Education
Humans
Male
Mixed methods research
Needs Assessment
Oncology
Parents & parenting
Surveys and Questionnaires
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary:Genetics in paediatric oncology is becoming increasingly important in diagnostics, treatment and follow-up care. Genetic testing may offer a possibility to stratify survivors follow-up care. However, survivors' and parents' preferences and needs for genetics-related services are largely unknown. This mixed-methods study assessed genetics-related information and service needs of survivors and parents. Six hundred and twenty-two participants (404 survivors: mean age: 26.27 years; 218 parents of survivors: mean age of child: 13.05 years) completed questionnaires. Eighty-seven participants (52 survivors; 35 parents) also completed in-depth telephone interviews. We analysed data using multivariable logistic regression and qualitative thematic analyses. Thirty-six of 50 families who were offered cancer-related genetic testing chose to undergo testing. Of those not offered testing, 11% of survivors and 7.6% of parents indicated that they believed it was 'likely/very likely' that the survivor had inherited a gene fault. Twenty-nine percent of survivors and 36% of parents endorsed access to a genetics specialist as important in their care. Survivors (40.9%) and parents (43.7%) indicated an unmet need for information about genetics and childhood cancer. Parents indicated a higher unmet need for information related to the survivors' future offspring than survivors (p 
ISSN:1018-4813
1476-5438
DOI:10.1038/s41431-019-0481-7