Abstract
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.
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Notes
Quality of Care Through the Patient’s Eyes
Other factor solutions were examined, but this solution appeared to be most sufficient.
The numbers in the parentheses refer to the statement numbers written on Q-cards.
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Acknowledgment
This study would not be possible without the contribution of individuals participating in the study and financial support from the Swedish Cancer Society.
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Hayat Roshanai, A., Lampic, C., Ingvoldstad, C. et al. What Information Do Cancer Genetic Counselees Prioritize?. J Genet Counsel 21, 510–526 (2012). https://doi.org/10.1007/s10897-011-9409-2
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DOI: https://doi.org/10.1007/s10897-011-9409-2