BMC cancer · 2026
Information-seeking experiences during genetic testing and counseling: a qualitative study of patients at high risk for hereditary breast cancer.
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Park Sun-Young, Kim Yeon-Joo, Chae Heejung, Choi Yoon-Jung, Ryu Kum Hei, Lee Eun-Gyeong, An Mijin, Kong Sun-Young, Jung So-Youn
Аннотация
BACKGROUND: Genetic testing and counseling have become increasingly prevalent in breast cancer treatment with the advancement of precision oncology. Understanding patients' information-seeking experiences is essential for providing better genetic cancer services. However, these experiences are insufficiently understood. This qualitative study explored the information-seeking experiences during genetic testing and counseling of patients at high risk for hereditary breast cancer.
METHODS: Four focus group interviews were conducted with 17 breast cancer patients who had undergone genetic testing and counseling. Participants were purposively recruited from the National Cancer Center's outpatient clinic in South Korea. Data were audio-recorded, transcribed verbatim, and analyzed inductively using thematic analysis, complemented by a deductive approach informed by Lambert and Loiselle's Health Information-Seeking Behavior (HISB) framework.
RESULTS: Three main themes, derived from 24 codes and seven subthemes, captured the characteristics of HISB: (1) type of information sought-stage-specific information needs, (2) amount of information sought-varied preferences for information amount based on coping with information load and uncertainty, and (3) preferred methods of information delivery-desire for clear, reliable, and supportive communication from providers.
CONCLUSIONS: These findings highlight the need for personalized information delivery at each stage: core decision content before testing, and results-contingent plans after testing-all tailored to individual preferences and coping capacity for information load and uncertainty. This study underscores the critical role of empathic and clear communication from HCPs supported by supplementary materials in facilitating informed decision-making and improving outcomes for patients at high risk for hereditary breast cancer.
METHODS: Four focus group interviews were conducted with 17 breast cancer patients who had undergone genetic testing and counseling. Participants were purposively recruited from the National Cancer Center's outpatient clinic in South Korea. Data were audio-recorded, transcribed verbatim, and analyzed inductively using thematic analysis, complemented by a deductive approach informed by Lambert and Loiselle's Health Information-Seeking Behavior (HISB) framework.
RESULTS: Three main themes, derived from 24 codes and seven subthemes, captured the characteristics of HISB: (1) type of information sought-stage-specific information needs, (2) amount of information sought-varied preferences for information amount based on coping with information load and uncertainty, and (3) preferred methods of information delivery-desire for clear, reliable, and supportive communication from providers.
CONCLUSIONS: These findings highlight the need for personalized information delivery at each stage: core decision content before testing, and results-contingent plans after testing-all tailored to individual preferences and coping capacity for information load and uncertainty. This study underscores the critical role of empathic and clear communication from HCPs supported by supplementary materials in facilitating informed decision-making and improving outcomes for patients at high risk for hereditary breast cancer.