155 Chapter 8 Chapter 1 is a general introduction to this thesis and provides background information on the etiology of OI, treatment, aspects of quality of life and bleeding tendency in patients with OI. Part 1 (Chapters 2 and 3) examined quality of life in adults with OI using patient-reported questionnaires that explore different dimensions of quality of life. These dimensions describe aspects of OI commonly mentioned by patients with OI in the doctor’s consultation room. Chapter 2 examined the quality of life in adults with OI based on eight different dimensions using the validated Short Form-36 questionnaire. It assessed four physical domains and four mental domains of quality of life. The physical domains include physical functioning, role limitations in daily activities due to physical health problems, bodily pain, and general health perceptions. The four mental domains include vitality, social functioning, role limitations in daily activities due to emotional problems, and general mental health. A total of 322 OI patients were included in the study and compared to the normative data of 2,778 average Dutch individuals. An important finding was that the physical domain of quality of life among individuals with OI was significantly lower compared to the control population, while the differences in the mental domains were less pronounced. All patients were categorized into age groups, revealing age-specific challenges. Certain domains of quality of life showed trends among different age groups, suggesting areas for further investigation. Pain emerged as a significant factor among OI patients, but it has as yet received limited research attention. Chapter 2 provides a baseline measurement of quality of life that can serve as a control for future interventions, a source for improving quality of care, and an inspiration for further research. Chapter 3 examined the prevalence and impact of fatigue on daily function in an OI cohort, involving 99 adults with OI. The results were compared to data from control populations from the United States and the Netherlands. The study showed that fatigue occurs significantly more frequently in people with OI compared to the control population, consistent with clinical observations. This study confirmed the suspicion of fatigue being an important complaint and encourages further investigation.
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