Patient Decision Aid in Supporting Decision-Making About When to Start or Stop New Drugs, Join Clinical Trials, or Continue Active Surveillance in Patients With Medullary Thyroid Cancer and Their Caregivers

PRIMARY OBJECTIVES:

I. To assess patient, caregiver, and provider decision-making needs. II. To design and
develop an initial patient decision aid prototype. III. To pilot test its acceptability.

OUTLINE:

Participants use decision aid and complete questionnaire.

Inclusion Criteria:

- Patient/survivor - who has medullary thyroid carcinoma, as determined by a clinician
or documented in their medical record or the Genetics of Endocrine Neoplasia Registry
or sporadic (medullary thyroid carcinoma) MTC database;

- Caregiver/family member - of patient/survivor who has medullary thyroid carcinoma, as
nominated by the patient/survivor

- Provider - who treats patients/survivors who have medullary thyroid carcinoma, as
described above

- Able to speak, read, and write English

Exclusion Criteria:

- Individuals with cognitive or psychological impairment (e.g., depression, anxiety,
severe mental illness; as documented in the registry)