15 Chapter 1 bone density, and scoliosis can affect quality of life, but the psychological burden of the disease such as fatigue, difficulty participating in daily life, mobility, self-care, independence, and pain can also affect the quality and are frequently reported 50,51. These factors can result in health impairment by limiting “normal” daytime activities. The lives of persons with OI are also regularly filled with hospital checkups, given that hospital checkups in these patients are on average 1.5-2.6 times more frequent than the Dutch average 2. People with OI sometimes describe their disease as a “full-time job”. The focus on preventing fractures in daily life sometimes limits activities, makes certain occupations impossible and makes certain homes unsuitable for living. These situational factors can also affect quality of life, in accordance with the WHO definition. Due to the huge impact of OI on life, it is important to determine how patients with OI experience their quality of life. There are many possible negative influencing factors, but the mindset of many people with OI also results in limitations being turned into opportunities 52. If the quality of life of people with OI is well known, the overall care in the multidisciplinary team for persons with OI can be focused on improving the worst perceived aspects. In addition, an individual patient with OI can be compared with other people with OI and more emphasis is placed on individual care needs. This underscores the importance of developing disease-specific patient-reported outcome measures (PROMs) in OI 53. In this way, value-driven care and shared decision-making develop the care that benefits people the most. Fatigue in OI One of the most frequently mentioned negative influencing factors on quality of life in clinical practice is fatigue. OI is a disease with a wide range of skeletal and extra-skeletal symptoms that can cause fatigue. Fatigue of itself has a major impact on both physical and psychological domains in healthy individuals. In the physical domain, for instance, pain and painkillers can promote fatigue 54,55 and lack of energy can lead to reduced enthusiasm and endurance to perform daily tasks. In the psychological domain, fatigue can reduce satisfaction and happiness, but can also have a negative impact on thinking skills, learning ability, memory, concentration and decision-making ability 56. The impairments on physical and psychological domains can contribute to a negative self-image or even a depression 57, and can affect social relationships and the dependence on others. OI is a disease which already has a wide range of skeletal and extra-skeletal symptoms that can cause restrictions on the physical domains and impairments on the psychological domain. For instance, brittle bones limit mobility and physical activities, and increase dependence on others 58. All the domains in which OI can cause impairment in itself and in which fatigue can cause additional impairment are at risk of reducing quality of life in OI.
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