Worries and concerns in a large unselected cohort of patients with Crohn's disease

Abstract

Objective. Disease-related worries constitute an important dimension of patient-reported perception of health status in inflammatory bowel disease (IBD). The Rating Form of IBD Patient Concerns (RFIPC) questionnaire is purported to measure IBD-related worries. This study evaluated the psychometric properties of a Swedish translation of RFIPC in an unselected population of Crohn's disease (CD) patients. The degree and nature of the worries were characterized and predictive factors for outcome of RFIPC and underlying dimensions were identified. Material and Methods. The RFIPC was completed by 447 CD patients in conjunction with regular visits. A physician global assessment of disease activity and four other health-related quality of life (HRQL) questionnaires were used for construct validity. Reliability and responsiveness were evaluated with follow-up visits. Underlying dimension and predictive factors were identified with factor analysis and multiple linear regression analysis. Results. Test-retest reliability was 0.90, correlation with corresponding HRQL measures 0.60–0.80 and responsiveness ratio 0.84. Median RFIPC sum score was lower than in previous studies. Top three concerns were ostomy, energy level and bowel control. Four dimensions were identified in descending order of concern: disease-related complications, daily-life achievements, intimacy, and stigmatization. Predictors of RFIPC score were disease activity, gender, and BMI (p < 0.001–0.008). Conclusions. The Swedish version of RFIPC exhibited an adequate psychometric performance in CD patients, but was less sensitive to change in disease activity. The patients were more concerned about complications and achievement than intimacy and stigmatization. The strongest predictors of more worry were active disease, female gender and higher BMI.

Key Words::

• Crohn's disease
• health-related quality of life
• inflammatory bowel disease
• worries and concerns

Acknowledgements

We thank nurses Anette Persson and Monica Wåhlin, County Hospital Ryhov, research nurseKerstin Eriksson, örebro University Hospital, and nurse Monica Arvidsson, Linköping University Hospital, for administrative help and care of the patients in the study. We also thank Dr. Christer Grännö, Dr. Leif Ockander, County Hospital Ryhov, Dr. Gunnar Järnerot, Dr. Björn Blomberg, Dr. Johan Bohr, Dr. Bengt Curman, Dr. Anders Gustavsson, Dr. Jan Karlsson, Dr. Martin Olesen, Dr. Ebba Salén, Dr. Hanna Sandberg-Gertzén, Dr. John Widström, Örebro University Hospital, Dr. Göran Bodemar (deceased), Dr. Peter Andersson, Dr. Per Druvefors, Dr. Stergios Kechagias, Dr. Hany Mitry, Dr. Per Myrelid, Dr. Gunnar Olaisson, Dr. Tomas Strid and Dr. Johan Söderholm, Linköping University Hospital, for enrolling patients in the study. The study was funded by the Research Council of Southeast Sweden and Futurum-the Academy of Healthcare, Jönköping County Council, Sweden.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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