Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

PURPOSE: Accurate and understandable information after genetic testing is critical for patients, family members, and professionals alike. METHODS: As part of a cross-site study from the Clinical Sequencing Evidence-Generating Research consortium, we investigated the information-seeking practices among patients and family members at 5 to 7 months after genetic testing results disclosure, assessing the perceived utility of a variety of information sources, such as family and friends, health care providers, support groups, and the internet. RESULTS: We found that individuals placed a high value on information obtained from genetics professionals and health care workers, independent of genetic testing result case classifications as positive, inconclusive, or negative. The internet was also highly utilized and ranked. Study participants rated some information sources as more useful for positive results compared with inconclusive or negative outcomes, emphasizing that it may be difficult to identify helpful information for individuals receiving an uncertain or negative result. There were few data from non-English speakers, highlighting the need to develop strategies to reach this population. CONCLUSION: Our study emphasizes the need for clinicians to provide accurate and comprehensible information to individuals from diverse populations after genetic testing.

Cancer information-seeking preferences linked to distinct patient experiences and differential satisfaction with cancer care.

OBJECTIVE: True person-centered care (PCC) involves anticipating, responding to, and integrating patients' needs and preferences as the illness experience unfolds. PCC success rests, in part, on quality provider-patient communication and tailored information exchange. These processes can have profound effects on the patient experience, self-management and health outcomes including survival. Cancer information-seeking preferences (CISP) by patients are increasingly found to modulate illness and care processes. However, research has yet to document the CISP types and prevalence as well as their associations with satisfaction with care. METHOD: Individuals (N = 2142) treated for cancer in the last 6 months completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and a CISP measure. RESULTS: Whereas 60.3% (n = 1292) reported wanting to actively seek information about their cancer, a surprisingly high percentage (i.e., 39.7%; n = 850) did not. Men reported avoiding cancer information to a greater extent than women, χ² (4, N = 2108) = 12.00, p = 0.02. CISP were also differentially associated with 6 key domains of satisfaction, with intense seekers consistently being less satisfied. CONCLUSION AND PRACTICE IMPLICATIONS: These findings underscore how CISP can significantly affect patients' cancer experience as well as their care satisfaction.