Patients’ Experiences and Challenges in Living with Inflammatory Bowel Disease: A Qualitative Approach

Abstract

Purpose

Inflammatory bowel disease (IBD) significantly impacts patients’ quality of life and imposes a considerable psychological, social, and financial burden. While the relationship between disease activity and quality of life is well established, the subjective challenges of living with IBD are more difficult to assess, and suggestions for improving patient experiences are lacking. The aim of this paper was to explore the various challenges patients encounter in living with IBD and to propose suggestions for overcoming them.

Patients and Methods

This study utilized a qualitative descriptive design with thematic content analysis. Patients were recruited from the Gastroenterology Clinic at McMaster University Medical Centre from December 2014 to April 2015. Data were collected over the course of 5 focus group interviews using a semi-structured interview guide.

Results

Seventeen patients aged 25 to 77 years old (mean age 43 years, SD 17 years) were interviewed. Fifteen patients were diagnosed with Crohn’s disease and 2 patients were diagnosed with ulcerative colitis. Findings were categorized into 18 subthemes which were grouped into 4 broader themes: awareness factor, psychosocial impacts, financial burden, and quality of care.

Conclusion

IBD is associated with complex personal challenges across various demographics. Identifying and meeting the unique needs of individual patients may be achieved through improving communication between patients and their healthcare providers. Family-based education approaches, individualized psychotherapy with therapists familiar with IBD, awareness initiatives addressed to important stakeholders, and patient involvement in community support groups may improve overall IBD care.

Keywords:

• Crohn’s disease
• ulcerative colitis
• qualitative
• patient burden
• psychosocial
• quality of care

Disclosure

This study was supported by the Health Professional Investigator (HPI) operating grant from Hamilton Health Sciences (Grant # HPI-12009). Mrs Usha Chauhan reports grants from Hamilton Health Sciences, during the conduct of the study; personal fees from Pfizer, personal fees from Janssen, personal fees from AbbVie, personal fees from Takada, outside the submitted work. The authors declare that they have no other conflicts of interest.