Comprehensive Development of TBI Care Questionnaires

The PP questionnaires went through a comprehensive developing process to warrant completeness and relevance of topics and face validity of questions. The neurotrauma evidencemap (http://neurotrauma.evidencemap.org/) was searched for gaps and inconsistencies in knowledge of optimal treatment and organization of TBI care, and used to define topics of interest. We included topics relevant for CER as well as topics relevant for descriptive analyses. Initial questions were formulated based on literature and suggestions from experts in the field. Available surveys and questionnaires in the field of TBI or critical care [10 , 11 (link)] were searched for and used for the (re)formulation of (additional) questions.
Questions related either to structures or processes of general or TBI-specific care. Structure refers to the conditions under which patient care is provided (e.g. the number of beds, trauma center designation, hospital facilities), and process refers to activities that constitute patient care (e.g. general hospital or department policies) [12 (link)]. Structural information could be extracted from hospital databases, annual reports and local registries. Process information refers to general policies rather than individual treatment preferences of responsible physicians. General policy was defined as ‘the way the large majority of patients (>75%) with a certain indication would be treated’, recognizing that there might be exceptions. We included open questions and multiple-choice questions. All questions were presented with text boxes that contained definitions and a short explanation about the interpretation and completion of the question. The definitions used in this paper are summarized in the Supplemental material (S2 File).
Experts in the field provided feedback on the initial formulated questions and proposed new questions and topics in three subsequent phases. Consulted experts included neurosurgeons, (neuro)intensivists, neurologists, emergency department (ED) physicians, rehabilitation physicians, medical ethicists, health care economists and epidemiologists. Some of the consulted experts had previous experience with the design and conduct of surveys in the field of TBI or critical care. In a first phase, a small group of involved experts discussed the questionnaires during an email conversation and a group discussion. In a second phase, an international expert panel, consisting of 25 experts from 9 countries, was consulted per email. These experts provided feedback on one or more of the questionnaires. Decisions on proposed content and formulation were then made during a group discussion with a small group of involved experts. These draft PP questionnaires were then pilot-tested in 16 of the participating CENTER-TBI centers. Each center completed two or three questionnaires, such that each questionnaire was pilot-tested at least three times. All answers were checked for unexpected or missing values and ambiguous questions were subsequently reformulated or deleted. Pilot-testers additionally completed a form in which they were asked to provide feedback, which was incorporated accordingly. All these processes resulted in a final set of eleven questionnaires related to different phases of TBI care (see Table 1). In total, there were 321 questions included in the PP.