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Assessing patient attitudes toward genetic testing for hereditary hematologic malignancy.

Addison Q Johnson¹, Sarah A Bannon^1,2, Laura S Farach^1,3

¹The University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences, Houston, Texas, USA.

European Journal of Haematology

|October 9, 2022

Summary

Leukemia patients show strong interest in genetic testing for hereditary hematologic malignancy (HHM). Despite some concerns about cost and insurance, most patients reported low distress and high willingness to undergo testing.

Keywords:

attitudes distress genetic counseling genetic testing hematologic malignancy leukemia

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Area of Science:

Hematology
Oncology
Genetics

Background:

Over 15 genes predisposing to hereditary hematologic malignancy (HHM) identified since 2003.
Genetic referrals for adult leukemia patients are underperformed despite comparable yields to solid tumors.

Purpose of the Study:

To assess leukemia patients' attitudes toward genetic testing for HHM.
To evaluate leukemia-related distress in patients eligible for genetic testing.

Main Methods:

Survey of 1093 adult patients with leukemia, myelodysplastic syndrome, or aplastic anemia.
Principal Component Analysis (PCA) for attitude assessment.
Impact of Event Scale-Revised (IES-R) for distress measurement.

Main Results:

High patient interest in genetic testing (77%) and willingness to undergo testing (78%).
Key barriers identified: cost of testing (58%) and health insurance coverage (61%).
PCA revealed themes including treatment impact, discrimination, confidentiality, psychosocial/familial effects, and cost.

Conclusions:

Leukemia patients express significant interest in genetic testing for HHM.
Barriers to testing are relatively few, with cost and insurance being primary concerns.
Patients generally report low levels of distress related to their diagnosis and potential genetic testing.