Risk Perception, Worry and Satisfaction Related to Genetic Counseling for Hereditary Cancer

Abstract

In this multi center study, genetic counseling for hereditary cancer was evaluated by assessing patients’ worry, perceived risk of developing cancer and satisfaction with genetic counseling. An overall aim was to identify characteristics of vulnerable patients in order to customize genetic counseling. In addition, agreement between patients’ and counselors’ scores was measured. A total of 275 Norwegian patients were consecutively recruited, and 213 completed questionnaires before and after genetic counseling. Patients’ perceived risk decreased after the genetic counseling session. There was incongruence between risk perception expressed as a percentage and in words. Patients were significantly less worried after counseling. Higher levels of worry were predicted by low instrumental satisfaction with counseling, high degree of perceived risk of developing cancer and younger age. In conclusion, counselors met the patients’ psychological needs to a satisfactory degree during counseling. However, patients did not fully understand their risk of developing cancer.

Descriptive and numeric estimation of risk for psychotic disorders among affected individuals and relatives: Implications for clinical practice

“…Although we demonstrated a correlation between numeric risk estimates and qualitative descriptors in the anticipated direction, consistent with studies conducted in other clinical contexts (Bjorvatn et al, 2007) and empirical research in cognitive psychology (Wertz, 1986), we found that the full range of qualitative descriptors were applied to each probability category. This is consistent with the literature propounding that qualitative risk descriptors are used to communicate more than simple numeric probability in other contexts (Austin, 2010).…”

“…Indeed, due to concerns around interpretability of numeric probabilities for laypersons, some authors have even suggested that using risk descriptors might be preferable (Crowson et al, 2007;Smerecnik et al, 2009). On the other hand however, risk descriptors such as "likely" are interpreted by different individuals to imply a huge range of probabilities (Weber, 1994;Bjorvatn et al, 2007). For example, Bjorvatn et al.…”

“…For example, Bjorvatn et al. (2007) found that different individuals attributed the descriptor "likely" to numeric probabilities of 30-90% and "possibly" to probabilities of 5-95% (Bjorvatn et al, 2007). Indeed, it seems clear that descriptors of risk in general are typically both used and interpreted when used by others as incorporating more than numeric probability alone (Weber, 1994), and that contextual factors are of critical importance in influencing how numeric probabilities are described (Michie et al, 2005;Sivell et al, 2008); (Patt and Schrag, 2003).…”

Developing genetic counseling for male BRCA1/2 mutation carriers based on their own experiences

“…[13] According to a Norwegian study, counselees consider genetic counselors' medical knowledge to be an important factor for addressing post GC-related worries. [11] Male BRCA1/2 mutation carriers have also reported high satisfaction levels with GC in Canada [14] and good-quality GC in Finland. [15] Participants deemed the medical information about cancer risks they received to be sufficient in the Finnish study [15] and adequate in the Canadian study.…”

“…[8][9][10] Several studies have found that counselees with identified risks of hereditary cancer syndromes were generally satisfied with the GC they received, in countries including Norway and Canada. [11,12] Previous studies have also found that counselees mainly want important medical information and advice in GC sessions, and information on the GC procedure. [13] According to a Norwegian study, counselees consider genetic counselors' medical knowledge to be an important factor for addressing post GC-related worries.…”