Meiser B.,Psychosocial Research Group |
Peate M.,Psychosocial Research Group |
Peate M.,University of Melbourne |
Levitan C.,Psychosocial Research Group |
And 7 more authors.
Journal of Genetic Counseling | Year: 2016
We developed and pilot-tested the first online psycho-educational intervention that specifically targets people with a family history of depression (‘LINKS’). LINKS provides genetic risk information and evidence-rated information on preventive strategies for depression and incorporates a risk assessment tool and several videos using professional actors. LINKS was pilot-tested in the general practitioner (GP) setting. The patient sample included people with a family history of at least one first-degree relative (FDR) with major depressive disorder (MDD) or bipolar disorder (BD). Patients attending participating GP practices were invited to enroll in the study by letter from their GP. Patients who self-identified as having at least one first-degree relative (FDR) with MDD or BD were eligible. Patients completed questionnaires, pre-post viewing LINKS, with measures assessing satisfaction, relevance, emotional impact and perceived improvement of understanding. Six GP practices participated, and 24 patients completed both questionnaires. Of these, all reported that they were satisfied or very satisfied with LINKS, and 74 % reported that LINKS met their expectations, and 21 % that it exceeded their expectations. LINKS was judged highly acceptable by this sample of GP attendees, and results indicate that an assessment of its effectiveness in a larger controlled trial is warranted. © 2016 National Society of Genetic Counselors, Inc.
PubMed | University of New South Wales, Prince of Wales Clinical School, Kaiser Permanente, Prince of Wales Hospital and 2 more.
Type: | Journal: European journal of cancer care | Year: 2016
Somatic mutations in key oncogenes in non-small cell lung cancer (NSCLC) and melanoma are important determinants of tumour sensitivity to targeted therapies. Molecular screening for these predictive biomarkers is routinely used to inform treatment decisions; however, little is known about how best to communicate testing and results to patients. This qualitative study aimed to explore advanced cancer patients attitudes and experiences regarding somatic tumour screening to identify their information and support needs. Sixteen NSCLC and eight melanoma patients who had undergone screening participated in a semi-structured face-to-face or telephone interview exploring their understanding, views, preferences and needs regarding screening. Interviews were audiotaped, transcribed and analysed for thematic patterns. Participants expressed positive views and unequivocal acceptance of screening, and understood its role in guiding treatment selection. They preferred to receive information verbally through simple, non-technical language from their oncologist with additional take-home materials. Patients were interested in learning about their test results, but wanted discussion to be focused on practical matters relevant to treatment. While receiving their screening results was not considered burdensome, information overload and cancer-related distress were identified as barriers to test comprehension. Patients may benefit from information and decision-related tools to better understand genomic information and adequately support psychosocial outcomes.