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A qualitative study to explore the symptoms and impacts of Crohn's disease and to develop the Crohn's Disease Diary.

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Title: A qualitative study to explore the symptoms and impacts of Crohn's disease and to develop the Crohn's Disease Diary.
Authors: Williams-Hall, Rebecca, Trennery, Claire, Sully, Kate, Wratten, Samantha, Francis, Anya, Chandler, Dale, Flynn, Jessica, Turner, Megan, Marks, Daniel J. B., Sackeyfio, Alfred, Bracher, Marguerite, Walker, Alex, Walker-Nthenda, Louise, Arbuckle, Rob, Keeley, Tom
Source: Quality of Life Research. Jan2023, Vol. 32 Issue 1, p209-223. 15p. 2 Diagrams, 2 Charts, 3 Graphs.
Subjects: Crohn's disease, Inflammatory bowel diseases, Abdominal pain, Intestinal diseases, Test validity
Abstract: Purpose: To explore symptoms and disease impacts of Crohn's disease and to develop a new patient-reported outcomes (PRO) measure according to industry best practices. Methods: A conceptual model of relevant symptoms experienced by patients with Crohn's disease was developed following a literature review. Three rounds of combined qualitative semi-structured concept elicitation and cognitive debriefing interviews with 36 patients (≥ 16 years) with Crohn's disease and 4 clinicians were conducted to further explore the most commonly reported and most bothersome symptoms to patients. Interview results were used to update the conceptual model as well as items and response options included in The Crohn's Disease Diary, a new PRO measure. Results: All patients (N = 36) reported abdominal pain, loose or liquid bowel movements, and high or increased frequency of bowel movements, with most reporting these symptoms spontaneously (100%, 92%, and 75%, respectively). All patients reported bowel movement urgency, but 61% reported this symptom only when probed. Most also reported that symptoms impacted activities of daily living, work/school, and emotional, social, and physical functioning (overall, 78%–100%; spontaneously, 79% – 92%). Data regarding core symptoms of Crohn's disease from clinician concept elicitation interviews supported patient data. The 17-item Crohn's Disease Diary assesses core symptoms and impacts of Crohn's disease over 24 h, and extraintestinal manifestations over 7 days. The content validity of the diary was confirmed during cognitive debriefing interviews. Conclusion: The Crohn's Disease Diary is a new PRO measure for the assessment of Crohn's disease symptoms and impacts, developed according to industry best practices. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: A qualitative study to explore the symptoms and impacts of Crohn's disease and to develop the Crohn's Disease Diary.
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  Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. Jan2023, Vol. 32 Issue 1, p209-223. 15p. 2 Diagrams, 2 Charts, 3 Graphs.
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  Data: <searchLink fieldCode="DE" term="%22Crohn's+disease%22">Crohn's disease</searchLink><br /><searchLink fieldCode="DE" term="%22Inflammatory+bowel+diseases%22">Inflammatory bowel diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Abdominal+pain%22">Abdominal pain</searchLink><br /><searchLink fieldCode="DE" term="%22Intestinal+diseases%22">Intestinal diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Test+validity%22">Test validity</searchLink>
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  Data: Purpose: To explore symptoms and disease impacts of Crohn's disease and to develop a new patient-reported outcomes (PRO) measure according to industry best practices. Methods: A conceptual model of relevant symptoms experienced by patients with Crohn's disease was developed following a literature review. Three rounds of combined qualitative semi-structured concept elicitation and cognitive debriefing interviews with 36 patients (≥ 16 years) with Crohn's disease and 4 clinicians were conducted to further explore the most commonly reported and most bothersome symptoms to patients. Interview results were used to update the conceptual model as well as items and response options included in The Crohn's Disease Diary, a new PRO measure. Results: All patients (N = 36) reported abdominal pain, loose or liquid bowel movements, and high or increased frequency of bowel movements, with most reporting these symptoms spontaneously (100%, 92%, and 75%, respectively). All patients reported bowel movement urgency, but 61% reported this symptom only when probed. Most also reported that symptoms impacted activities of daily living, work/school, and emotional, social, and physical functioning (overall, 78%–100%; spontaneously, 79% – 92%). Data regarding core symptoms of Crohn's disease from clinician concept elicitation interviews supported patient data. The 17-item Crohn's Disease Diary assesses core symptoms and impacts of Crohn's disease over 24 h, and extraintestinal manifestations over 7 days. The content validity of the diary was confirmed during cognitive debriefing interviews. Conclusion: The Crohn's Disease Diary is a new PRO measure for the assessment of Crohn's disease symptoms and impacts, developed according to industry best practices. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1007/s11136-022-03233-9
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        Type: general
      – SubjectFull: Inflammatory bowel diseases
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      – SubjectFull: Abdominal pain
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