Development and validation of the disease-specific Short Bowel Syndrome-Quality of Life (SBS-QoL™) scale

P. Berghöfer, K.C. Fragkos, J. P. Baxter, A. Forbes, F. Joly, H. Heinze, S. Loth, M. Pertkiewicz, B. Messing, P. B. Jeppesen

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    Abstract

    Background & aims: Subjects with short bowel syndrome (SBS) have impaired quality of life (QoL). No disease-specific instrument has been available to measure treatment-induced changes in QoL over time. Therefore, the aim was to develop and validate an SBS-specific QoL scale. Methods: Classical test theory and Food and Drug Administration (FDA) guidance were applied for development and validation of the SBS-QoL™. Procedures included item generation and raw scale construction. Factor analysis, construct validity and internal consistency were assessed in a non-interventional observation, test re-test reliability and responsiveness in a randomised clinical study. Results: The SBS-QoL™ comprises 17 items including two subscales. Subjects assessed the scale as easy to handle and comprehensible. Good construct validity was shown by comparison with the Home Parenteral Nutrition-Quality Of Life questionnaire as an external scale, which yielded moderately high correlation (r=0.7). High internal consistency was demonstrated (Cronbach's alpha: 0.94). Also the test re-test reliability was high (r=0.95), indicating reliable reproducibility of results. The Responsiveness Index (1.84) indicated the ability of the scale to detect changes in QoL over time. Conclusions: The SBS-QoL™ is an easy to handle and comprehensible SBS-specific subject-reported QoL scale. It is valid, reliable and sensitive with excellent psychometric characteristics to measure treatment-induced changes in QoL over time in subjects with SBS.
    Original languageEnglish
    Pages (from-to)789-796
    Number of pages8
    JournalClinical Nutrition
    Volume32
    Issue number5
    DOIs
    Publication statusPublished - 2013

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    Berghöfer, P., Fragkos, K. C., Baxter, J. P., Forbes, A., Joly, F., Heinze, H., Loth, S., Pertkiewicz, M., Messing, B., & Jeppesen, P. B. (2013). Development and validation of the disease-specific Short Bowel Syndrome-Quality of Life (SBS-QoL™) scale. Clinical Nutrition, 32(5), 789-796. https://doi.org/10.1016/j.clnu.2012.12.001