Afsaneh Hayat Roshanai

Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives? : a randomized study

Purpose. The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees’ knowledge, risk perception, information sharing and satisfaction with the service. Methods. In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees’ knowledge and personal risk estimations were measured at four time points. In addition, counselees’ satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. Results. A significant increase in the level of knowledge in participants in the “breast cancer group” regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. Conclusion. Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.

Factors influencing primary care physicians’ decision to order prostate-specific antigen (PSA) test for men without prostate cancer

Abstract Background. Despite extensive ongoing clinical trials investigating appropriateness of prostate-specific antigen (PSA)-screening, the benefit of PSA-based screening for prostate cancer remains controversial due to the lack of clear evidence for effectiveness of population-based PSA-screening. Notwithstanding, the need to identify the determinants behind PSA-testing decisions, the number of studies that have examined factors affecting the physicians’ decision as to whether PSA-testing should be ordered are few. The aim of the current study was to investigate how physician- and patient-related factors influence Swedish primary care physicians’ decision to order a PSA test for men harboring no symptoms of prostate cancer within different age groups. Methods. A total of 305 physicians filled out the study questionnaire containing items about physicians’ attitudes towards PSA-testing and the probability of screening men within different age groups. Results. The majority of physicians reported positive attitude towards PSA-testing. However, the likelihood of offering PSA-testing to young men was low, but increased with age. Physicians’ opinion about PSA-test as a sufficient screening tool was the only variable affecting physicians’ decision of ordering PSA-test regardless of patient age. The level of the patients’ worry, and patients request were the most influential factors in age groups between 40 and 70 years old. Patients’ physical symptoms were an indicator in age groups above 60 years. Conclusion. The decision to screen for prostate cancer using the PSA-test is influenced by several factors and not only those having direct clinical indication for prostate disease. This may lead to unnecessary treatment of some patients.

Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives

PurposeThe aim of the present descriptive study was to investigate the experience of sharing genetic information among cancer genetic counselees and their at-risk relatives.MethodsIn total, 147 cancer genetic counselees and 81 of their at-risk relatives answered to a study specific questionnaire and/or were interviewed. Counselees’ communication of genetic information to at-risk relatives was assessed with regard to who they informed, how they felt, and how they perceived their relatives’ reactions. In addition, at-risk relatives’ experiences of receiving genetic information were studied.ResultsMost of the counselees had shared the genetic information received at the counseling session personally with their at-risk relatives. The majority of the counselees (68%) reported positive or neutral feelings about sharing the genetic information with their relatives while 9% stated negative feelings. Counselees mostly interpreted the relatives’ reactions to the information as positive or neutral (62% of responses), and in few cases as negative (14% of responses). About half of relatives reported positive or neutral reactions (54%) to the received information, while about one-fifth reported negative reactions (22%). Nevertheless, most relatives were satisfied with the received information and half of the relatives intended to seek genetic counseling themselves.ConclusionSharing genetic information to at-risk relatives appears to be accomplished without any major difficulties or negative feelings. However, more assistance may be needed to optimize the communication of the genetic information within at-risk families.

What Information Do Cancer Genetic Counselees Prioritize

This study explored the informational needs of individuals attending genetic counseling for hereditary cancer, using a free-choice and a forced choice method. Prior to the consultation the informational needs of 334 counselees from Sweden and Norway were assessed by the QUOTE-gene (ca) questionnaire and by a study specific forced choice method, using Q-methodology. Questionnaire responses indicated that counselees’ major concerns pertained to the need to be taken seriously, to be provided with sufficient risk estimation and medical/genetic information and to be involved in the decision making process. Furthermore, prior to counseling, counselees noted that the counselors’ consideration and skillfulness were also extremely important. Analysis of the Q-sorting results revealed that counselees’ needs could be assigned to one of five groups: the “need for facts; caring communication and medical information; information and support in communicating the genetic information to others; practical care and practical/medical information”. Particularly noteworthy, counselees with varying backgrounds characteristics prioritized different needs. Cancer genetic counselees probably have different needs due to their medical and demographic background when attending genetic counseling. Addressing counselees’ specific concerns more sufficiently and thereby increasing the overall effectiveness of the counseling session requires increased insight into individual needs, by for instance, utilizing screening methods such as QUOTE-gene (ca) prior to the counseling session.

Fetal ultrasound examination and assessment of genetic soft markers in Sweden: are ethical principles respected?

To explore procedures for providing information, assessment and documentation about ultrasound soft markers in Sweden.

Is genetic counseling a stressful event

Abstract Purpose. The aim of this paper was to investigate whether cancer genetic counseling could be considered as a stressful event and associated with more anxiety and/or depression compared to other cancer-related events for instance attending mammography screening or receiving a cancer diagnosis. Methods. A total of 4911 individuals from three Scandinavian countries were included in the study. Data was collected from individuals who had attended either cancer genetic counseling (self-referred and physician-referred) or routine mammography screening, were recalled for a second mammograpy due to a suspicious mammogram, had received a cancer diagnosis or had received medical follow-up after a breast cancer-surgery. Data from the genetic counseling group was also compared to normative data. Participants filled in the Hospital Anxiety and Depression Scale twice: prior to a potentially stressful event and 14 days after the event. Results. Pre-counseling cancer genetic counselees reported significant lower level of anxiety compared to the cancer-related group, but higher levels of anxiety compared to the general population. Furthermore, the level of depression observed within the genetic counseling group was lower compared to other participants. Post-event there was no significant difference in anxiety levels between the cancer genetic counselees and all other groups; however, the level of depression reported in the self-referred group was significantly lower than observed in all other groups. Notably, the level of anxiety and depression had decreased significantly from pre-to post-events within the genetic counseling group. In the cancer-related group only the level of anxiety had decreased significantly post-event. Conclusion. Individuals who attend cancer genetic counseling do not suffer more anxiety or depression compared to all other cancer-related groups. However, some counselees might need additional sessions and extended support. Thus, identifying extremely worried individuals who need more support, and allocating further resources to their care, seems to be more sufficient.

Swedish University Students' Opinion Regarding Information About Soft Markers.

The aim of this study was to investigate the opinions of Swedish university students about information regarding soft markers, when observed at second trimester ultrasound screening. A cross-sectional survey, where 85 Swedish university students completed a study specific questionnaire containing eleven hypothetical scenarios, involving various parameters (disease/syndromes/malformations with different characteristics), and location of the markers. Almost all participants indicated that they would wish to be informed, prior to the ultrasound examination, about the assessment and significance of soft markers. However, the number of respondents who requested information about a potential actual finding was considerably less. Several participants wanted to be informed about detected markers associated to serious conditions but not when the marker indicated an increased risk for a treatable disease. Also, the specific location of the marker was of importance to the participants. The majority of respondents wished to be informed about the soft markers if they were observed in the heart or the brain of the foetus, compared to if they were located in the intestine or the skeleton. The students’ opinion, in this study, implicate the importance of pre-examination information to enable expectant parents to make informed choice regarding the second trimester ultrasound screening as well as on reciving information of actual findings.