Patient knowledge and information-seeking about personalized cancer therapy

Abstract

Background Understanding patients’ knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients’ knowledge and information-seeking behaviors regarding PCT. Methods Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. Results Knowledge regarding cancer genetics and PCT was moderate (mean 8.7 +/− 3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. Conclusion Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients’ initial source of information about PCT. Understanding patients’ knowledge deficits at presentation may help inform patient education efforts.

Understanding and information needs of cancer patients regarding treatment‐focused genomic testing: A systematic review

“…There were nine quantitative studies, published between 2007 and 2017, from Canada (n = 2), USA (n = 6), and France (n = 1) . The majority of cancer patients in these studies were middle‐class and well‐educated Caucasian women.…”

“…The majority of cancer patients in these studies were middle‐class and well‐educated Caucasian women. Six out of nine studies focused exclusively on women diagnosed with breast cancer who underwent Oncotype Dx genomic testing . The remaining three studies explored genomic testing experiences of people with various types of cancer such as gastrointestinal, lung, liver and melanoma .…”

“…While four of the studies employed reliable and validated measures, in the five remaining studies the authors developed their own questionnaires, which were not pretested or validated . Patients' understanding and knowledge about genomic testing was examined in most of the studies, and six of them investigated association between knowledge of genomic testing and socio‐demographic factors such as age, income, and level of education . Most studies also explored cancer patients' information needs and the experiences of decision‐making process regarding genomic testing.…”

“…There was variability in the use of measures assessing patients' knowledge about genomic testing. Two of the studies adopted measures that were reviewed for validity and further evaluated by pilot testing prior to performing the study . Authors of each study generally developed their own measures, most of which were statements with true or false answers .…”

Informationssuche und Nutzung von Informationsquellen durch Melanompatienten deutscher Hautkrebszentren

“…Um ein geeignetes Instrument für die Datenerhebung zu finden, führten wir eine kritische Literaturrecherche durch. Wir stellten fest, dass die Methoden und Fragebögen, die zur Untersuchung des Informationsverhaltens von Krebspatienten verwendet wurden, meist für eine bestimmte Studie entwickelt und zugeschnitten waren, da validierte Erhebungsinstrumente nicht zur Verfügung standen . Für die Untersuchung des Informationssuchverhaltens von MP in Deutschland entwickelten wir ebenfalls einen umfassenden standardisierten Fragebogen in Zusammenarbeit mit MP deutscher Selbsthilfegruppen (aus Berlin, Buxtehude, Dresden, Freiburg) sowie medizinischem Personal.…”