title: Health determining concepts important to people with Crohn's disease and their coverage by patient-reported outcomes of health and wellbeing.
abstract: OBJECTIVE
  Busy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD.
  
  
  METHODS
  Two systematic literature reviews were done to identify relevant DHs and clinically relevant PROs. We conducted a qualitative narrative biographical study and mapped the patients' experiences to concepts that determine health in a positive way. Experiences, DHs and the items of the PROs were compared by the WHO International Classification of Functioning, Disability and Health (ICF) as a common framework.
  
  
  RESULTS
  15 people with CD with a median age of 46 years (IQR 34-60) and median disease duration of 15 years (IQR 8-30) participated. Self-efficacy, social support, job satisfaction and occupational balance were mentioned most frequently. While participation appeared to have greater meaning to men, appreciation and resilience seemed to be more important for women. Of 18 PROs the Perceived Stress Questionnaire (PSQ), the Inflammatory Bowel disease - Self-efficacy scale (IBD-SES), the Life Orientation Test - Revised (LOT-R) and the Patient Activation Measure 13 (PAM-13) cover most DHs.
  
  
  CONCLUSIONS
  This is the first study elaborating the coverage of patient's perspective by commonly used PROs in CD. The findings could support health professionals to focus on DHs in people with CD in clinical practice and research.
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: mona.duer@meduniwien.ac.at.
authors: Mona
authors: M
authors: Dür
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: martina.sadlonova@meduniwien.ac.at.
authors: Martina
authors: M
authors: Sadloňová
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: stefanie.haider@meduniwien.ac.at.
authors: Stefanie
authors: S
authors: Haider
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: alexa.binder@meduniwien.ac.at.
authors: Alexa
authors: A
authors: Binder
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: michaela.stoffer@meduniwien.ac.at.
authors: Michaela
authors: M
authors: Stoffer
authors: Institute for Medical Informatics, Biometry and Epidemiology, Ludwig-Maximilians-University, Munich, Germany. Electronic address: michaela.coenen@med.uni-muenchen.de.
authors: Michaela
authors: M
authors: Coenen
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: josef.smolen@wienkav.at.
authors: Josef
authors: J
authors: Smolen
authors: Department of Internal Medicine III, Division of Gastroenterology and Hepatology, Medical University of Vienna, Austria. Electronic address: clemens.dejaco@meduniwien.ac.at.
authors: Clemens
authors: C
authors: Dejaco
authors: Department of Internal Medicine III, Division of Diabetology, Medical University of Vienna, Austria. Electronic address: alexandra.kautzky-willer@meduniwien.ac.at.
authors: Alexandra
authors: A
authors: Kautzky-Willer
authors: Department of Physical Medicine and Rehabilitation, Medical University of Vienna, Austria. Electronic address: pmr-office@meduniwien.ac.at.
authors: Veronika
authors: V
authors: Fialka-Moser
authors: Department of Internal Medicine III, Division of Gastroenterology and Hepatology, Medical University of Vienna, Austria. Electronic address: gabriele.moser@meduniwien.ac.at.
authors: Gabriele
authors: G
authors: Moser
authors: Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna, Austria. Electronic address: Tanja.stamm@meduniwien.ac.at.
authors: Tanja Alexandra
authors: TA
authors: Stamm
mesh_terms: D000328:Adult; D003424:Crohn Disease / Q000523:psychology*; D005260:Female; D006801:Humans; D007588:Job Satisfaction; D008297:Male; D008875:Middle Aged; D063868:Patient Outcome Assessment; D012929:Psychological Distance; D036301:Qualitative Research; D055500:Resilience, Psychological; D020377:Self Efficacy; D012737:Sex Factors; D064890:Social Determinants of Health; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Crohn's disease; DH; DHs; Determinants of health; HP; Health and wellbeing; Health promotion; Inflammatory bowel disease; Patient-reported outcomes; determinant of health; determinants of health; health promotion
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