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Chapter 9288often solely available as self-report, while individuals with ID may not be able to self-report. However, outcomes may still be difficult to measure by proxy-reports34 and other proxy-raters often seem to assess quality of life worse compared to self-raters.35–40 That urges to find ways to receive information from the individual whom it concerns.41 It has been suggested that individuals with ID can reliably report on their health status despite of the heterogeneity, provided that instruments are appropriate to their age and cognitive functioning.42,43 It should be attempted to include the patient’s experiences by alternative methods, such as the use of emoticons, experience sampling methods44 and digital apps.In search for relevant outcome measurement instruments: disorder-specific and personalized outcome measuresAs outcome measurement instruments can be relatively long and timeconsuming to fill out, and confronting due to inappropriate questions especially for lower levels of functioning, acceptability is often considered poor.45 Also, the burden it may pose to the often already overworked caregivers should be taken into account. Furthermore, an effect may be statistically significant, but not clinically or socially relevant, or vice versa. Generally, commonly used questionnaires do not include specific domains of interest and disorder-specific symptoms that are important to the patient populations, due to the heterogeneity and complexity of manifestations. For these target populations, these instruments may thus have limited relevancy and sensitivity.45–49 Therefore, the desire for disorder-specific outcome measures has been expressed by several patient communities to measure the impact of the particular disease on health. In Chapter 6, a TSCspecific patient-reported outcome measure (TSC-PROM) is developed and validated together with patient representatives and TSC experts. The TSCPROM is developed to measure the impact of TSC on mental functioning, physical functioning, activities and participation, social support someone receives and quality of life, using the International Classification of Functioning and Disability (ICF) (World Health Organization 2001). The ICF provides a framework to select a combination of outcome measures that capture all components to better understand the impact of a diagnosis on all life domains, providing relevant interventions for optimal quality of life. PROMs provide quantitative evaluation of symptoms and functioning from Annelieke Muller sHL.indd 288 14-11-2023 09:08