Literature DB >> 23274148

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

P Berghöfer1, K C Fragkos, J P Baxter, A Forbes, F Joly, H Heinze, S Loth, M Pertkiewicz, B Messing, P B Jeppesen.   

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.
Copyright © 2012 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.

Entities:  

Keywords:  CTT; Classical test theory; Quality of life (QoL); RI; Responsiveness Index; Scale; Short bowel syndrome (SBS); VAS; Validation; Visual Analogue Scale

Mesh:

Substances:

Year:  2012        PMID: 23274148     DOI: 10.1016/j.clnu.2012.12.001

Source DB:  PubMed          Journal:  Clin Nutr        ISSN: 0261-5614            Impact factor:   7.324


  10 in total

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Journal:  Qual Life Res       Date:  2013-09-13       Impact factor: 4.147

Review 2.  Need for transition medicine in pediatric surgery - health related quality of life in adolescents and young adults with congenital malformations.

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Review 4.  Getting to grips with sarcopenia: recent advances and practical management for the gastroenterologist.

Authors:  Thomas William Hollingworth; Siddhartha M Oke; Harnish Patel; Trevor R Smith
Journal:  Frontline Gastroenterol       Date:  2020-01-20

5.  Assessing Non-Invasive Liver Function in Patients with Intestinal Failure Receiving Total Parenteral Nutrition-Results from the Prospective PNLiver Trial.

Authors:  Elisabeth Blüthner; Ulrich-Frank Pape; Martin Stockmann; Mirjam Karber; Sebastian Maasberg; Sophie Pevny; Undine Gerlach-Runge; Andreas Pascher; Johann Pratschke; Frank Tacke; Jan Bednarsch
Journal:  Nutrients       Date:  2020-04-26       Impact factor: 5.717

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Authors:  Kristina Chen; Fan Mu; Jipan Xie; Sneha S Kelkar; Clément Olivier; James Signorovitch; Palle B Jeppesen
Journal:  JPEN J Parenter Enteral Nutr       Date:  2019-04-21       Impact factor: 4.016

7.  Impact of intestinal failure and parenteral support on adult patients with short-bowel syndrome: A multinational, noninterventional, cross-sectional survey.

Authors:  Palle B Jeppesen; Saeid Shahraz; Thomas Hopkins; Andrew Worsfold; Elisabeth Genestin
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8.  Development and Validation of a Clostridium difficile Health-related Quality-of-Life Questionnaire.

Authors:  Kevin W Garey; Samuel L Aitken; Liliane Gschwind; Sumana Goddu; Yang Xie; Catherine Duff; Frédéric Barbut; Dhara N Shah; Herbert L DuPont
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9.  GLP-2 analog teduglutide significantly reduces need for parenteral nutrition and stool frequency in a real-life setting.

Authors:  Marc Schoeler; Thomas Klag; Judith Wendler; Simon Bernhard; Michael Adolph; Andreas Kirschniak; Martin Goetz; Nisar Malek; Jan Wehkamp
Journal:  Therap Adv Gastroenterol       Date:  2018-08-30       Impact factor: 4.409

10.  Identifying a subpopulation with higher likelihoods of early response to treatment in a heterogeneous rare disease: a post hoc study of response to teduglutide for short bowel syndrome.

Authors:  Kristina S Chen; Jipan Xie; Wenxi Tang; Jing Zhao; Palle B Jeppesen; James E Signorovitch
Journal:  Ther Clin Risk Manag       Date:  2018-07-25       Impact factor: 2.423

  10 in total

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