32 The SF-36 questionnaire 4 was provided during the first appointment. All new adult patients who attended the center from December 2007 until November 2018 were selected. Exclusion criteria were age <18 years and unavailability to fill in the questionnaire. Informed consent was obtained from each participant, and the Medical Ethics Committee of the Isala Hospital, Zwolle, the Netherlands, approved the study protocol and provided a non-WMO (Medical Research Involving Human Subjects Act) waiver. Evaluation of quality of life in patients with OI QoL was assessed using the validated self-reported health assessment tool, the SF-36 questionnaire 5,6, which is composed of 36 questions in eight different domains that examine aspects of physical and mental health in a 4-week timeframe. The SF-36 questionnaire is used in multiple countries to measure QoL in patients; it has been extensively tested for reliability and validity 6–10. The four main physical domains are physical function, role limitations caused by physical health problems, bodily pain, and general health perceptions. The four main mental domains are vitality, social function, role limitations based on emotional problems, and general mental health. Each domain score is linearly converted to a 0 to 100 scale. A higher score is correlated with better mental and physical health. The physical and mental domains can be summarized in two broad scores: the physical component summary and the mental component summary. These summary scores reflect self-assessed physical and mental activity. All patients with different types of OI were divided in age categories to compare QoL in patients with OI. Control groups The control values are based on two different studies. The first control was the result of a municipal screening that was carried out in 1992 by the University of Groningen, the Netherlands. It concerned a group of 1063 adults, randomly selected from the civil register of Township Emmen. The data of this control group were available according to different age ranges 11. For the general comparison, a national randomly selected control group without age range (n = 1742) was used. Data from these individuals were generated from a study conducting a nationwide, population-based health status survey for the purpose of generating normative data for a study of patients with congenital heart defects 5. The SF-36 questionnaire results of both control groups are presented in Figure 1.
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