143 Chapter 7 Limitations The people included in the studies were from a cohort of people with OI who were seen by a single multidisciplinary team in one OI Expert Centre, and therefore not representative for patients who are not seen by such teams in the Netherlands or internationally. There is evidence in the literature that multidisciplinary interventions can significantly improve quality of life. Therefore, it is possible that the quality of life reported in our studies is underestimated and there was a partially biased sample. Furthermore, the validated and widely used questionnaires used to measure bleeding tendency and quality of life are not disease-specific. This has to be taken into account when interpreting the results. Conclusions While the quality of life in individuals with OI may be lower than in healthy reference populations especially on specific dimensions such as physical functioning, not all domains of quality of life are affected by the condition. Consequently, it is important that a multidisciplinary, individualistic, and holistic approach is used in the care for individuals with OI, and interventions need to be considered at the individual patient level. As quality of life can vary with age, it is important to assess quality of life regularly throughout the lifespan. Further research is necessary to fully understand the various dimensions of quality of life in individuals with OI. Furthermore, an increased bleeding tendency is a common complication in adults with OI and can be a significant clinical challenge. The underlying pathophysiology of this increased bleeding tendency in OI is not well understood and further research is needed. The management of bleeding episodes in people with OI requires an individualized approach, and the use of antifibrinolytics and coagulation factors may be helpful in this context.
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