Parent and Patient Proxies' Preferences on Whole-body MRI Techniques for Cancer Predisposition Syndromes' Surveillance.

PURPOSE: Given trade-offs between whole-body MRI(WBMRI) techniques' attributes for cancer predisposition syndromes (CPS) surveillance, we determined the strength of preferences of adolescents with no cancer history (group 1) and their parents (group 2) (proxies) for different WBMRI surveillance approaches in CPS.

METHODS

A proxy cohort of adolescents without cancer history (group 1) and their parents (group 2) completed a discrete choice experiment (DCE) survey on hypothetical situations of cancer surveillance imaging as if they or their children had a CPS. Five attributes (diagnostic accuracy; examination length; radiation exposure; intravenous access discomfort; and contrast extravasation risk) and 3 WBMRI techniques (inversion recovery [IR]; diffusion-weighted [DW]+IR; positron-emission tomography [PET]-MRI) were assessed in association with respondents' age, sex, education level, and prior MRI history.

RESULTS

There were 86 of 342 (25.1%) participants; N=71 (83%) females; 21 (24%) adolescents 12 years or older and 18 years or younger, and 65 (76%) parents. Diagnostic accuracy was ranked highest for importance for groups 1 (47.6%) and 2 (55.3%). Group 1 ranked examination length and risk of radiation exposure as second (23.8%) and third (19.0%) preferred attributes, respectively; group 2 ranked these attributes reversely (15.3% and 18.4%). Group 1 ranked intravenous access discomfort and radionuclide extravasation risk as the fourth preferred attribute, 4.8% each, while they were ranked fourth (7.7%) and fifth (3.7%) for group 2. No agreement was reached for aggregated responses (kappa coefficient=0 or McNemar test P >0.05), or any predictors(multinomial logistic regression) between groups 1 and 2.

CONCLUSION

Although both adolescents and parents agreed on diagnostic accuracy as the most important attribute in CPS imaging surveillance, other preferences were discordant, opening up discussions about whom the clinical decision-making process should align with.