PUB - Publikationen an der Universität Bielefeld

Aim The initial manifestation of inflammatory bowel diseases (IBD) often occurs in childhood and adolescence. As the disease affects the whole life and environment of patients, the measurement of health-related quality of life (HRQoL) in children and adolescents with IBD is of particular relevance. The aim of this paper was to analyse which instruments are used to measure self-reported HRQoL in the target group so far. Moreover, the instruments EQ-5D-Youth (EQ-5D-Y) and IMPACT-III were tested for their methodological adequacy in measuring HRQoL in young IBD-patients. Method A systematic review was performed (February 2016) to identify studies gathering the self-reported HRQoL of young IBD-patients and the respective instruments that were published since 2010. The examination of the EQ-5D-Y and the IMPACT-III was based on criteria for quality assessment (e.g. validity, acceptance) of patient-reported outcome measures and expert interviews with two pediatric gastroenterologists to highlight strengths and weaknesses in practical implementation. Results Overall, 18 studies were included in the systematic review. Thereby, different generic instruments (KINDLR, KID-SCREEN-10, KIDSCREEN-27, PedsQL (TM) 4.0, 15D/16D/17D, CHQ-CF87 and EQ-5D) for the measurement of self-reported HRQoL in children and adolescents with IBD were identified. On the contrary, only two disease specific instruments (IMPACT-III, SHS) emerged from the literature review. Based on the quality criteria and the experts' views, the detailed analysis of the EQ-5D-Y as well as the IMPACT-III showed that both instruments are suitable to assess HRQoL of young IBD-patients. However, both questionnaires revealed a potential for optimisation. Discussion Despite the fact that the EQ-5D-Y was not used to measure HRQoL in children and adolescents with IBD yet, the instrument might be appropriate in assessing HRQoL in the target group. The IMPACT-III, as a disease specific instrument, seems to be most suitable to measure the HRQoL in the IBD population. That is also reinforced by the routine use of this instrument. However, the length of the IMPACT-III is a major shortcoming which perhaps indicates a further need for research, also in comparison to the new disease specific instrument Short Health Scale (SHS).