Assessment of information needs in diabetes: Development and evaluation of a questionnaire

To develop a questionnaire suitable for assessing the information needs of individuals with diabetes mellitus types 1 and 2 in diverse healthcare settings (e.g. primary care or long-term care) and at different time points during the course of the disease.

The initial questionnaire was developed on the basis of literature search and analysis, reviewed by clinical experts, and evaluated in two focus groups. The revised version was pilot-tested on 39 individuals with diabetes type 2, type 1 and gestational diabetes.

The final questionnaire reveals the most important information needs in diabetes. A choice task, a rating task and open-ended questions are combined. First, participants have to choose three topics that interest them out of a list with 12 general topics and specify in their own words their particular information needs for the chosen topics. They are then asked how informed they feel with regard to all topics (4-point Likert-scale), and whether information is currently desired (yes/no). The questionnaire ends with an open-ended question asking for additional topics of interest.

Careful selection of topics and inclusion of open-ended questions seem to be essential prerequisites for the unbiased assessment of information needs. The questionnaire can be applied in surveys in order to examine patterns of information needs across various groups and changes during the course of the disease. Such knowledge would contribute to more patient-guided information, counselling and support.