Initial cancer genetic counseling consultation: change in counselees' cognitions and anxiety, and association with addressing their needs and preferences.
The fulfillment of counselees' expectations in cancer genetic counseling and how this affects the outcome of counseling have received little attention so far. This study investigates how the initial consultation influences counselees' cognitions and anxiety, whether counselors address counselees' prior needs and preferences during the visit, and whether addressing needs is associated with a more positive outcome of the visit. One hundred twenty-eight affected and unaffected counselees from families with no known mutation, who were seen by one of fourteen counselors, participated. Pre- and post-visit questionnaires assessed correct knowledge about hereditary breast or colon cancer, perceived personal control (PPC), anxiety (STAI), risk perceptions, and (fulfillment of) needs (QUOTE-gene(ca)). Results demonstrated a pre- to post-visit significant increase in correct knowledge and PPC, and a significant decrease in STAI and risk perceptions. However, marked overestimation of risks persisted. Decrease in STAI and risk perceptions was significantly less pronounced in affected versus unaffected counselees. The majority of counselees were (very) satisfied about the extent to which their needs were addressed, albeit about one-fifth were not regarding emotional matters and explanations about their own cancer risk. Finally, the better counselees perceived their needs to be fulfilled, the significantly higher their PPC and the significantly lower their STAi scores were. Findings suggest that both unaffected and affected counselees should be counseled carefully. Also, a more effective service may be attained if counselors pay more attention to counselees' emotional needs and detail more inheritance and penetrance of mutated genes in relation to counselees' family history.
Pieterse
Arwen H
AH
NIVEL (Netherlands Institute of Health Services Research), Utrecht. a.pieterse@nivel.nl
Ausems
Margreet G E M
MG
Van Dulmen
Alexandra M
AM
Beemer
Frits A
FA
Bensing
Jozien M
JM
D000293:Adolescent; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology; D001294:Attitude to Health; D003071:Cognition; D003142:Communication; D005260:Female; D005817:Genetic Counseling / Q000379:methods / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods / Q000592:standards; D017060:Patient Satisfaction; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013997:Time Factors