138 Recommendations for clinical practice Based on the studies presented in this thesis the following recommendations were formulated: Facilitate follow-up on quality of life using Patient-Reported Outcome Measurements (PROMS) Chronic conditions such as Osteogenesis Imperfecta (OI) have a long-term impact on the lives of patients. In caring for people with chronic disease, quality of life is an important component as it reveals the personal experience and impact of having an incurable disability 82. Patient-Reported Outcome Measurements (PROMS) questionnaires can be used for monitoring health, functional status and quality of life throughout the disease process. The measurements allow healthcare providers to choose the best treatment in collaboration with the patient and to monitor disease progression. PROMs can facilitate communication between patients and caregivers as well as help patients to better understand and manage their health. For instance, at the OI Expert Centre in Isala hospital in Zwolle, the Netherlands, the results of the individual PROMS can be viewed and implemented directly in the consulting room. The results of Chapter 2 can be used to compare an individual OI patient with the entire cohort of people with OI and with a healthy control population. Through shared decision-making, so together with the patient, aspects of quality of life that need more attention can be identified and assessed (integrated care interventions). Assess quality of life at different ages Chapter 2 distinguishes quality of life at different ages. Adolescents who have just left their parents’ home do not face the same problems as older adults with OI. For stressful events related to reproductive decisions, psychological counselling may be helpful 32,35,83. It is important to see each patient in their unique stage of life and explore what is needed to improve quality of life 84–86. It is also important that new treatments have a positive impact on quality of life. Stimulate multidisciplinary treatment and (inter)national cooperation Measuring quality of life frequently has several advantages. The knowledge gained on quality of life and how it can be improved can be used to develop guidelines and to write patient leaflets about treatment options, care and management of OI. Not only does quality of life depend on many factors, but the patients also differ from each other and have many different symptoms. It is therefore important to continue to measure quality of life at an individual level and to tailor treatment accord-
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