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Family history‐taking practices and genetic confidence in primary and tertiary care providers for childhood cancer survivors
Author(s) -
Wakefield Claire E.,
Quinn Veronica F.,
Fardell Joanna E.,
Signorelli Christina,
Tucker Katherine M.,
Patenaude Andrea F.,
Malkin David,
Walwyn Thomas,
Alvaro Frank,
Cohn Richard J.
Publication year - 2018
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.26923
Subject(s) - medicine , family history , family medicine , survivorship curve , primary care , genetic testing , genetic counseling , tertiary care , cancer , nursing , surgery , biology , genetics
Background There is growing impetus for increased genetic screening in childhood cancer survivors. Family history‐taking is a critical first step in determining survivors’ suitability. However, the family history‐taking practices of providers of pediatric oncology survivorship care and the confidence of these providers to discuss cancer risks to relatives are unknown. Procedure Fifty‐four providers completed semistructured interviews in total, which included eight tertiary providers representing nine hospitals across two countries (63% male, 63% oncologists, 37% nurses) and 46 primary care providers (PCPs) nominated by a survivor (59% male, 35% regional practice). We used content analysis and descriptive statistics/regression to analyze the data. Results Few tertiary (38%) or primary (35%) providers regularly collected survivors’ family histories, often relying on survivors/parents to initiate discussions. Providers mostly took two‐generation pedigrees (63% tertiary and 81% primary). Primary providers focused on adult cancers. Lack of time, alternative priorities, and perceived lack of relevance were common barriers. Half of all tertiary providers felt moderately comfortable discussing genetic cancer risk to children of survivors (88% felt similarly discussing risks to other relatives). Most primary providers lacked confidence: 41% felt confident regarding risks to survivors’ children and 48% regarding risks to other relatives. Conclusions While family history‐taking will not identify all survivors suitable for genetics assessment, recommendations for regular history‐taking are not being implemented in tertiary or primary care. Additional PCP‐targeted genetic education is warranted given that they are well placed to review family histories of pediatric cancer survivors.