Effect of a health literacy training program for surgical oncologists and specialized nurses on disparities in referral to breast cancer genetic testing
Jeanine A.M. van der Giessen,
Sandra van Dulmen,
Mary E. Velthuizen,
Maria E.T.C. van den Muijsenbergh,
Klaartje van Engelen,
Margriet Collée,
Thijs van Dalen,
Cora M. Aalfs,
Maartje J. Hooning,
Peter M.M. Spreeuwenberg,
Mirjam P. Fransen,
Margreet G.E.M. Ausems
Affiliations
Jeanine A.M. van der Giessen
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht, the Netherlands
Sandra van Dulmen
Nivel (Netherlands Institute for Health Services Research) Utrecht, the Netherlands; Radboud University Medical Center, Radboud Institute for Health Sciences, Department of Primary and Community Care, Nijmegen, the Netherlands
Mary E. Velthuizen
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht, the Netherlands
Maria E.T.C. van den Muijsenbergh
Pharos, Center for Healthcare Disparities, Utrecht, the Netherlands
Klaartje van Engelen
Department of Clinical Genetics, Amsterdam UMC, VU University Medical Center, Amsterdam, the Netherlands
Margriet Collée
Department of Clinical Genetics, Erasmus University, Medical Center, Rotterdam, the Netherlands
Thijs van Dalen
Division of Surgery, Diakonessenhuis Utrecht, the Netherlands
Cora M. Aalfs
Department of Clinical Genetics, Amsterdam UMC, Academic Medical Center, Amsterdam, the Netherlands
Maartje J. Hooning
Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, the Netherlands
Peter M.M. Spreeuwenberg
Nivel (Netherlands Institute for Health Services Research) Utrecht, the Netherlands
Mirjam P. Fransen
Department of Public and Occupational Health, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, the Netherlands
Margreet G.E.M. Ausems
Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, Utrecht, the Netherlands; Corresponding author. Division Laboratories, Pharmacy and Biomedical Genetics, Department of Genetics, University Medical Center Utrecht, P.O. Box 85500 3508, GA, Utrecht, the Netherlands.
Background: There is an underuse of genetic testing in breast cancer patients with a lower level of education, limited health literacy or a migrant background. We aimed to study the effect of a health literacy training program for surgical oncologists and specialized nurses on disparities in referral to genetic testing. Methods: We conducted a multicenter study in a quasi-experimental pre-post (intervention) design. The intervention consisted of an online module and a group training for surgical oncologists and specialized nurses in three regions in the Netherlands. Six months pre- and 12 months post intervention, clinical geneticists completed a checklist with socio-demographic characteristics including the level of health literacy of each referred patient. We conducted univariate and logistic regression analysis to evaluate the effect of the training program on disparities in referral to genetic testing. Results: In total, 3179 checklists were completed, of which 1695 were from hospital referrals. No significant differences were found in educational level, level of health literacy and migrant background of patients referred for genetic testing by healthcare professionals working in trained hospitals before (n = 795) and after (n = 409) the intervention. The mean age of patients referred by healthcare professionals from trained hospitals was significantly lower after the intervention (52.0 vs. 49.8, P = 0.003). Conclusion: The results of our study suggest that the health literacy training program did not decrease disparities in referral to genetic testing. Future research in a more controlled design is needed to better understand how socio-demographic factors influence referral to breast cancer genetic testing and what other factors might contribute.
