Original contribution
Concerns of patients with inflammatory bowel disease: results from a clinical population

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Abstract

OBJECTIVE:

The impact of chronic illness is influenced not just by physical symptoms but also by psychosocial factors. The aim of this study was to determine the concerns of inflammatory bowel disease (IBD) patients in a clinical sample, if concerns differ between patients from varied clinical and demographic variables, and if concerns influence well-being beyond the influence of physical symptoms.

METHODS:

Subjects (n = 259) completed a validated measure of concerns specific to IBD and provided demographic and disease-related information.

RESULTS:

The most intense concerns involved both physical (e.g., energy level) and psychosocial issues (e.g., achieving full potential). There were numerous differences in disease concerns based on ability to work but none based on disease duration. Factor analysis yielded three indices: body image and interpersonal concerns, general physical impact, and disease stigma. Age and education only affected certain concern indices in subgroups of patients. Greater concerns negatively influenced well-being beyond the influence of physical symptoms.

CONCLUSION:

Psychosocial factors, in addition to physical symptoms, play an important role on the impact of illness in patients with IBD.

Introduction

Inflammatory bowel disease (IBD) encompasses ulcerative colitis (UC) and Crohn’s disease (CD), two idiopathic chronic inflammatory diseases of the gut. The importance of health-related quality of life is recognized in IBD, both quantitatively as measure of treatment outcome (1) and qualitatively, where the description of the concerns experienced by people with IBD may deepen the clinician’s appreciation of the illness experience and provide focus for the development of relevant psychosocial interventions (2).

Descriptive research into the concerns of people living with IBD has been facilitated by Drossman’s Rating Form for IBD Patient Concerns (RFIPC), a validated self-report measure (3), which has allowed the determination of patient concerns in a large community sample (4), a smaller European (predominantly CD) clinical sample 5, 6, and has allowed comparison of concerns between IBD diagnosis (6), between genders (7), and between countries (8). RFIPC concerns have not been reported, however, from a clinical sample that is well balanced with respect to UC and CD and that is large enough to permit replication of the factor analysis that was performed on the community sample (6). As a result, it is not clear to what extent the concerns of patients who attend a gastroenterological clinic differ from those of people in the community. The first purpose of this study was, therefore, to determine the leading concerns of IBD outpatients at a tertiary care facility. A related purpose was to determine if the factor structure of the RFIPC measured in a community sample would also hold true in a clinical sample.

We have reported elsewhere on differences in concerns between genders (7) and between people who seek psychological counseling and those who do not (9). In this sample, we also tested the influence of age, education, and symptom severity on RFIPC concerns and tested differences between other groups of clinical relevance (disease type, shorter vs longer disease duration, ability or inability to work because of IBD). Finally, it was determined if concerns influence patients’ sense of well-being beyond the contribution of their physical symptoms.

Section snippets

Materials and methods

This study was approved by the scientific and ethics committees of the Clarke Institute and the University of Toronto. Participants provided informed consent.

Demographics

As Table 1demonstrates, the 241 subjects were approximately equally split between diagnoses and between genders. There was no gender difference in age or education. Those unable to work because of their IBD were slightly less educated (X = 13.3 yr). The majority were married or cohabiting, with more UC patients being married than CD patients.

Regarding health status, 60 patients had ever had an ostomy, whereas 33 still had an ostomy when they completed the study. A previous but not current

Discussion

The primary purpose of this study was to determine the worries and concerns of outpatients at a tertiary care facility. The top 10 numerically ranked concerns of these outpatients related to energy level, effects of medications, the uncertain nature of the disease, having surgery and/or an ostomy bag, achieving full potential, loss of bowel control, being a burden on others, producing unpleasant odors, and feelings about body. This list corresponds closely to that produced by a community sample

Acknowledgements

We thank Ms. Josee Casati for help with the data collection and Drs. Noreen Stuckless and William Lancee for statistical advice. We also thank Dr. Douglas A. Drossman, University of North Carolina School of Medicine, Chapel Hill, NC, for his invaluable comments on the manuscript, as well has his timely provision of the RFIPC, without which this study would not have been possible.

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Financial assistance was provided by the Departments of Psychiatry, Medicine, and Surgery, Mount Sinai Hospital, Toronto, Ontario, Canada.

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