Patients’ Experiences and Challenges in Living with Inflammatory Bowel Disease: A Qualitative Approach
Bibliographic record
Abstract
Jelena Popov,1,2 Yasamin Farbod,1 Usha Chauhan,1 Mona Kalantar,1,2 Lee Hill,3 David Armstrong,4 Smita Halder,4 John K Marshall,4 Paul Moayyedi,4 Sharon Kaasalainen5 1Hamilton Health Sciences, Adult Digestive Diseases, Hamilton, Ontario, Canada; 2University College Cork, College of Medicine and Health, Cork, Ireland; 3Department of Pediatrics, McMaster University Medical Centre, Hamilton, Ontario, Canada; 4Department of Medicine (Division of Gastroenterology) and Farncombe Family Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; 5School of Nursing, McMaster University, Hamilton, Ontario, CanadaCorrespondence: Jelena PopovHamilton Health Sciences, Adult Digestive Diseases, 1280 Main Street West, HSC 3N51H, Ontario, L8S 4K1, CanadaTel +1-905-521-2100 ext. 73543Fax +1-905-570-8962Email popovj2@mcmaster.caPurpose: 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
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.046 | 0.040 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.013 | 0.012 |
| Scholarly communication | 0.007 | 0.008 |
| Open science | 0.004 | 0.015 |
| Research integrity | 0.003 | 0.006 |
| Insufficient payload (model declined to judge) | 0.007 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".