TY - JOUR
T1 - Patient self-reported concerns in inflammatory bowel diseases
T2 - A genderspecific subjective quality-of-life indicator
AU - Swiss IBD Cohort Study Group
AU - Pittet, Valérie
AU - Vaucher, Carla
AU - Froehlich, Florian
AU - Burnand, Bernard
AU - Michetti, Pierre
AU - Maillard, Michel H.
AU - Anderegg, Claudia
AU - Bauerfeind, Peter
AU - Beglinger, Christoph
AU - Begré, Stefan
AU - Belli, Dominique
AU - Bengoa, José M.
AU - Biedermann, Luc
AU - Bigler, Beat
AU - Binek, Janek
AU - Blattmann, Mirjam
AU - Boehm, Stephan
AU - Borovicka, Jan
AU - Braegger, Christian P.
AU - Brunner, Nora
AU - Bühr, Patrick
AU - Burri, Emanuel
AU - Buyse, Sophie
AU - Cremer, Matthias
AU - Criblez, Dominique H.
AU - De Saussure, Philippe
AU - Degen, Lukas
AU - Delarive, Joakim
AU - Doerig, Christopher
AU - Dora, Barbara
AU - Dorta, Gian
AU - Egger, Mara
AU - Ehmann, Tobias
AU - El-Wafa, Ali
AU - Engelmann, Matthias
AU - Ezri, Jessica
AU - Felley, Christian
AU - Fliegner, Markus
AU - Fournier, Nicolas
AU - Fraga, Montserrat
AU - Frei, Pascal
AU - Frei, Remus
AU - Fried, Michael
AU - Funk, Christian
AU - Furlano, Raoul Ivano
AU - Gallot-Lavallée, Suzanne
AU - Geyer, Martin
AU - Girardin, Marc
AU - Golay, Delphine
AU - Sauter, Bernhard
N1 - Publisher Copyright:
© 2017 Pittet et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
PY - 2017/2
Y1 - 2017/2
N2 - Background Patient-reported disease perceptions are important components to be considered within a holistic model of quality of care. Gender may have an influence on these perceptions. We aimed to explore gender-specific concerns of patients included in a national bilingual inflammatory bowel disease cohort. Methods Following a qualitative study, we built a questionnaire comprising 37 items of concern. Answers were collected on a visual analog scale ranging from 0 to 100. Principal axis factor analysis was used to explore concern domains. Linear multiple regressions were conducted to assess associations with patient characteristics. Results Of 1102 patients who replied to the survey, 54% were female and 54% had Crohn's disease. We identified six domains of concern: socialization and stigmatization, disease-related constraints and uncertainty, symptoms and their impact on body and mind, loss of body control (including sexuality), disease transmission, and long-term impact of the disease. Cancer concerns were among the highest scored by all patients (median 61.8). Severity of symptoms was the only factor associated with concerns, unrelated to dimension and gender (p<0.015). In women, being >40 years decreased disease-related constraints and uncertainty concerns, and being at home or unemployed increased them. Treatments were associated with increased socialization and stigmatization and with increased disease-related constraints and uncertainty concerns in men. Overall, psychosomatic characteristics were highly associated with concerns for both men and women. Depending on the concern dimensions, increased levels of concern were associated with the highest signs of anxiety in women or depression in men, as well as lower health-related quality of life in men. Conclusions Patients have numerous concerns related to their illness that need to be reassessed regularly. Concerns differ between men and women, suggesting that information and communication about the disease should take gender differences and subjective perceptions of quality of life into consideration.
AB - Background Patient-reported disease perceptions are important components to be considered within a holistic model of quality of care. Gender may have an influence on these perceptions. We aimed to explore gender-specific concerns of patients included in a national bilingual inflammatory bowel disease cohort. Methods Following a qualitative study, we built a questionnaire comprising 37 items of concern. Answers were collected on a visual analog scale ranging from 0 to 100. Principal axis factor analysis was used to explore concern domains. Linear multiple regressions were conducted to assess associations with patient characteristics. Results Of 1102 patients who replied to the survey, 54% were female and 54% had Crohn's disease. We identified six domains of concern: socialization and stigmatization, disease-related constraints and uncertainty, symptoms and their impact on body and mind, loss of body control (including sexuality), disease transmission, and long-term impact of the disease. Cancer concerns were among the highest scored by all patients (median 61.8). Severity of symptoms was the only factor associated with concerns, unrelated to dimension and gender (p<0.015). In women, being >40 years decreased disease-related constraints and uncertainty concerns, and being at home or unemployed increased them. Treatments were associated with increased socialization and stigmatization and with increased disease-related constraints and uncertainty concerns in men. Overall, psychosomatic characteristics were highly associated with concerns for both men and women. Depending on the concern dimensions, increased levels of concern were associated with the highest signs of anxiety in women or depression in men, as well as lower health-related quality of life in men. Conclusions Patients have numerous concerns related to their illness that need to be reassessed regularly. Concerns differ between men and women, suggesting that information and communication about the disease should take gender differences and subjective perceptions of quality of life into consideration.
UR - http://www.scopus.com/inward/record.url?scp=85012244035&partnerID=8YFLogxK
U2 - 10.1371/journal.pone.0171864
DO - 10.1371/journal.pone.0171864
M3 - Article
C2 - 28187201
AN - SCOPUS:85012244035
SN - 1932-6203
VL - 12
JO - PLoS ONE
JF - PLoS ONE
IS - 2
M1 - e0171864
ER -