Trial Information

Attitudes Towards Prophylactic Colectomy in HNPCC Patients

Hereditary non-polyposis colorectal cancer (HNPCC) is associated with up to an 80% lifetime
risk of developing colorectal cancer and a 40-50% chance of a metachronous tumor after
partial colectomy for the disease. For these patients, prophylactic colectomy has been
proposed as a potential risk management alternative to a lifetime of intensive surveillance
by colonoscopy. The highly personal nature of such risk management decisions has been
recognized in the development of individualized genetic counseling services. However, prior
psychosocial research in this area has tended to use linear statistical techniques in which
clinically important details are lost in an overly broad, one size-fits-all model that is
difficult to apply in a one-to-one counseling session. We propose an innovative approach
based on the Cognitive-Social Health Information Processing (C-SHIP) model in which we will
explore how attitudes towards prophylactic colectomy are organized into meaningful patterns
or types that can translate readily into tailored counseling recommendations. Specific aims
of this study are: 1)to assess levels of intention in prophylactic colectomy among HNPCC
patients; 2)To identify distinctive decision types based on profiles of perceived pros and
cons of prophylactic colectomy; and 3) To explore the pattern of relations between decision
types and counseling-related outcomes (level of intention in colectomy, cancer-specific
anxiety, and colonoscopy adherence). We will conduct a one-time cross-sectional telephone
survey of 320 HNPCC patients (defined as either carriers of a mutated mismatch repair gene
associated with HNPCC or those with a personal/family history meeting published criteria for
HNPCC). Using cluster analysis we will create a taxonomy of decision types. Prior research
leads us to expect at least three types: Disengaged, Risk-Focused, and Ambivalent. We
hypothesize that each type will have a different pattern of relations with the outcome
variables (e.g., Risk-focused types will show higher level of intention regarding surgery,
high anxiety, low avoidance, and high colonoscopy adherence, whereas Ambivalent types will
show higher level of intention regarding surgery, high anxiety, high avoidance, and low
colonoscopy adherence). Understanding these patterns will enhance the ability of physicians,
genetic counselors, and other providers to help their patients make well informed,
thoughtful decisions about the preventive strategy that will best protect their health,
emotional well-being, and quality of life.