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@ARTICLE{Boerkoel:281525,
      author       = {Boerkoel, Aletta and Buchholz, Maresa and Tischler, Luisa
                      and Weber, Niklas and Hoffmann, Wolfgang and de Laffolie,
                      Jan and Berg, Neeltje van den},
      collaboration = {Group, CEDATA Study},
      title        = {{H}ealth-related quality of life in patients with
                      paediatric inflammatory bowel disease: {IMPACT}-{III}
                      validation in {G}ermany.},
      journal      = {Health and quality of life outcomes},
      volume       = {23},
      number       = {1},
      issn         = {1477-7525},
      address      = {London},
      publisher    = {BioMed Central},
      reportid     = {DZNE-2025-01143},
      pages        = {94},
      year         = {2025},
      abstract     = {Health related quality of life (HRQoL) in paediatric
                      patients with inflammatory bowel disease (IBD) is typically
                      measured using the patient reported outcome measure
                      IMPACT-III. This measure has not yet been validated for
                      German patients using the new 4-domain structure. As Germany
                      has a comparatively high prevalence of paediatric IBD and as
                      the IMPACT-III is the main HRQoL outcome measure in use, a
                      validation in the German population is overdue.To validate
                      the main patient reported outcome measure of health-related
                      quality of life (HRQoL) in paediatric patients with
                      inflammatory bowel disease (IBD) IMPACT-III in a German
                      patient sample.Clinical and HRQoL data was gathered in the
                      CEDATA-GPGE registry. To determine the psychometric
                      performance of the IMPACT-III in a German sample,
                      distribution properties, reliability (Cronbach's alpha) and
                      validity (correlations with clinical values; known-groups
                      validity by age, sex, and self-rated health) were
                      calculated. In addition, a confirmatory factor analysis was
                      performed to determine the appropriateness of the factor
                      structure.The IMPACT-III was filled out by 221 patients
                      (Female $46\%;$ Mage=14.05; Morbus Crohn n = 126; Ulcerative
                      Colitis n = 79; unclassified IBD n = 18). The total score
                      ranged from 19.29 to 95.00, without the occurrence of
                      ceiling or floor effects. Internal consistency using
                      Cronbach's alpha was excellent (α = 0.91) for the total
                      scale. The total score correlated strongly with the
                      subscales of wellbeing (r = 0.90) and social functioning (r
                      = 0.80). Concerning validity, the subscale of wellbeing
                      correlated with self-reported health and clinical
                      assessments. Younger patients (< 14) reported a
                      significantly better HRQoL than older patients (14-17). The
                      4-domain structure of IMPACT-III could not be confirmed
                      through factor analysis.The German version of the IMPACT-III
                      is a valid and reliable instrument to measure HRQoL in
                      paediatric patients with IBD. The subscales of well-being
                      and social functioning explain most of the total score. To
                      interpret the subdomains of the IMPACT-III further research
                      in a longitudinal design needs to be done, especially with
                      age-related phrasing of the items.German Clinical Trials
                      Register DRKS00015505. Registered on 22.01.2019 Inclusion of
                      patients 01.03.2019;
                      https://drks.de/search/en/trial/DRKS00015505 .},
      keywords     = {Humans / Quality of Life: psychology / Male / Female /
                      Germany / Adolescent / Psychometrics / Child / Inflammatory
                      Bowel Diseases: psychology / Patient Reported Outcome
                      Measures / Reproducibility of Results / Surveys and
                      Questionnaires: standards / Health related quality of life
                      (Other) / Paediatric inflammatory bowel diseases (Other) /
                      Patient reported outcomes (Other) / Psychometric testing
                      (Other)},
      cin          = {AG Thyrian / AG Michalowsky / AG Hoffmann},
      ddc          = {610},
      cid          = {I:(DE-2719)1510800 / I:(DE-2719)5000067 /
                      I:(DE-2719)1510600},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:41039592},
      pmc          = {pmc:PMC12492618},
      doi          = {10.1186/s12955-025-02437-0},
      url          = {https://pub.dzne.de/record/281525},
}