133 Chapter 7 In Chapter 2, the quality of life in OI at specific adult ages was described – for the first time in literature as far as we know. These measurements at different ages provide an opportunity to see trend lines and offer timed interventions. Instead of an increase in physical limitations at older ages, as was seen in the control group, physical limitations in OI type 3 progressively decreased to a level where there is no longer a significant difference with the healthy control group. The same trend is seen for social functioning and role-limitations due to both physical and emotional health problems. This phenomenon has also been described in previous semi-structured qualitative interviews with patients having OI and their parents on the transition from adolescence to adulthood in North America 14 and the UK 15. This may support the theory that people with severe OI types are increasingly able to cope with their limitations in adult life, which may be beneficial for their social life, and ultimately beneficial for their mental health 3. This highlights the need for taking physiotherapeutic and occupational therapy interventions to improve functional status, particularly at an early age. Well-being Well-being is a dimension of quality of life that includes pain, vitality and mental health 16. A commonly reported symptom in OI is pain (Chapter 2). All patients with OI, regardless of the type of OI, experienced significantly more pain than the control group. On a scale of 1 to 100 points, patients with OI scored on average 17 points lower than the control group (Chapter 2). Pain can be either acute or chronic and can be caused by fractures or scoliosis 17,18. Pain is a prominent issue in OI, having a major impact on quality of life 19–22. Also in other connective tissue diseases pain is known to be associated with psychological problems 23,24. Some authors state that pain and fatigue are the best predictors of quality of life in chronically ill patients 20,25. Chapter 2 outlines that pain is significantly worse in people with OI compared to control populations, and that people with different types of OI do not differ significantly in their level of pain. This means that the type of OI does not determine whether a person has more pain, but that it varies from patient to patient. This is confirmed in other studies of adult OI patients 3–6,13, suggesting that it is helpful to assess a person’s pain at regular points in time, regardless of OI type. Among the mental dimensions of quality of life (Chapter 2), it is striking that people with OI type 1 score significantly lower than the control population 1,2. However, this difference is small: on a scale of 1 to 100 points, patients with OI type 1 score 3.2 points lower than the control population, and type 1 patients aged 35-54 years score 6.4 points lower than the control population. For the other types of OI and other specific age groups, there was no difference in mental health between peo-
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