Hester Wessels

Tablet, Web-Based, or Paper Questionnaires for Measuring Anxiety in Patients Suspected of Breast Cancer: Patients' Preferences and Quality of Collected Data

Background Electronic applications are increasingly being used in hospitals for numerous purposes. Objective Our aim was to assess differences in the characteristics of patients who choose paper versus electronic questionnaires and to evaluate the data quality of both approaches. Methods Between October 2012 and June 2013, 136 patients participated in a study on diagnosis-induced stress and anxiety. Patients were asked to fill out questionnaires at six different moments during the diagnostic phase. They were given the opportunity to fill out the questionnaires on paper or electronically (a combination of tablet and Web-based questionnaires). Demographic characteristics and completeness of returned data were compared between groups. Results Nearly two-thirds of patients (88/136, 64.7%) chose to fill out the questionnaires on paper, and just over a third (48/136, 35.3%) preferred the electronic option. Patients choosing electronic questionnaires were significantly younger (mean 47.3 years vs mean 53.5 in the paper group, P=.01) and higher educated (P=.004). There was significantly more missing information (ie, at least one question not answered) in the paper group during the diagnostic day compared to the electronic group (using a tablet) (28/88 vs 1/48, P<.001). However, in the week after the diagnostic day, missing information was significantly higher in the electronic group (Web-based questionnaires) compared to the paper group (41/48 vs 38/88, P<.001). Conclusions Younger patients and patients with a higher level of education have a preference towards filling out questionnaires electronically. In the hospital, a tablet is an excellent medium for patients to fill out questionnaires with very little missing information. However, for filling out questionnaires at home, paper questionnaires resulted in a better response than Web-based questionnaires.

Cancer patients’ intentions towards receiving unsolicited genetic information obtained using next-generation sequencing

Next-generation sequencing (NGS) can be used to generate information about a patient’s tumour and personal genome. This powerful diagnostic tool provides solicited and unsolicited hereditary genetic (risk) information that could have consequences for cancer patients and their quality of life. A well-defined approach for returning appropriate genetic risk information is needed in personalized cancer care. A qualitative design with semi-structured interviews was used. We conducted interviews with 24 Dutch patients with different types of cancer, both NGS-experienced and NGS-inexperienced, to learn their intentions, needs and preferences towards receiving unsolicited genetic information obtained using NGS. Almost all participants had a positive attitude towards receiving unsolicited findings. After receiving comprehensive background information on NGS, including a binning model of four categories of unsolicited findings, most participants preferred to receive only subsets of genetic information. Their main concern was their own and others’ (including family members) ability to cope with (the increased risk of having) a genetic disorder. Providing background information gave cancer patients the opportunity to select subsets of findings and increased their ability to make an informed choice. Special attention is needed for social and emotional factors to support the patients themselves and when communicating test results with their family members.