The proposed cross-sectional study is intended to obtain information regarding current surveillance behaviors and other psychosocial outcomes among persons affected by the multiple endocrine neoplasia (MEN) 1 or MEN2, which are inherited conditions. Study participants will include patients who have been seen previously at MDACC for evaluation of MEN1 or MEN2, spouses/significant others and family members of MDACC MEN1 patients as well as MEN1 patients recruited through online support groups. Because this is the first time we are contacting these patients to invite them to participate in psychosocial research, the proposed study also will help us determine the feasibility of conducting similar studies in the future. We anticipate that data gathered from this study will enhance existing knowledge about the psychological and behavioral aspects of the MEN syndromes, and will inform future research efforts directed toward this understudied population.
The specific aims of the study include:
1. Profile the demographic, health-related, psychosocial and behavioral characteristics of adults with MEN1 or MEN2.
2. Evaluate MEN-specific distress as well as adherence to surveillance regimens among adults with MEN1 or MEN2, and identify associated with those outcomes.
3. Explore parents' attitudes about MEN1 predictive genetic testing in minors.
4. Identify predictors of parents' attitudes about MEN1 genetic testing in minors. |