Patient involvement in questionnaire design: tackling response error and burden
Abstract
Questionnaires capture patient perspectives succinctly and at relatively low cost, making them a popular data collection tool for health researchers. However, questionnaire data can be affected by response error and response burden. Patient involvement during questionnaire design can help reduce the effect of response error and burden. This paper describes a novel approach for patient involvement during questionnaire design, combining methods from cognitive interviewing (Think Aloud Tasks) with an open-ended follow-up discussion to collate and act on patient feedback, while also taking account of the common challenges in questionnaire design (i.e. response error and burden). The strengths and limitations of this approach are discussed, and recommendations are made for future use.
Plain english summary
Health researchers often use questionnaires to collect data. When patients fill in questionnaires, they may interpret the questions differently from how the researchers intended. This is an example of response error. Answers can also be affected by how much effort it takes to fill in the questionnaire, this is called response burden. For example, patients may pay less attention at the end of a long questionnaire. Involving patients in questionnaire design is important because it can help prevent response error and burden. This paper describes a new way of gathering patient feedback during questionnaire design, which combines techniques used in research with an open-ended discussion. It describes the strengths and weaknesses of this approach, and outlines tips for researchers and patients involved in questionnaire design.