Life with a stoma across five European countries—a cross-sectional study on long-term rectal cancer survivors

• Published in: Supportive care in cancer Vol. 30; no. 11; pp. 8969 - 8979
• Main Authors: Krogsgaard, Marianne, Kristensen, Helle Ø, Furnée, Edgar J. B., Verkuijl, Sanne J., Rama, Nuno José, Domingos, Hugo, Maciel, João, Solis-Peña, Alejandro, Espín-Basany, Eloy, Hidalgo-Pujol, Marta, Biondo, Sebastiano, Sjövall, Annika, Emmertsen, Katrine J., Thyø, Anne, Christensen, Peter
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-11-2022; Springer; Springer Nature B.V
• Subjects: Analysis; Cancer; Cancer survivors; Colorectal cancer; Cross-sectional studies; Disease management; Medicin och hälsovetenskap; Medicine; Medicine & Public Health; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original Article; Ostomy; Pain Medicine; Quality of life; Rehabilitation Medicine; Skin diseases; Survivor; Denmark; Sweden; Netherlands; Portugal; Europe; Spain; Long-term survivor; Rectal cancer; Parastomal bulge; Stoma care; Daily activities; Symptoms
• ISSN: 0941-4355; 1433-7339; 1433-7339
• DOI: 10.1007/s00520-022-07293-y

Purpose
Stoma-related problems are known to be important to patients and potentially affect everyday life. The prevalence of stoma-related problems in rectal cancer survivors remains undetermined. This study aimed to examine aspects of life with a long-term stoma, stoma management, and stoma-related problems and explore the impact of stoma-related problems on daily life.
Methods
In total, 2262 patients from 5 European countries completed a multidimensional survey. Stoma-related problems were assessed using the Colostomy Impact score. Multivariable regression analysis, after adjusting for potential confounding factors, provided odds ratio (OR) and 95% confidence intervals (CI) for stoma-related problems’ association with restrictions in daily life.
Results
The 2262 rectal cancer survivors completed the questionnaire at a median of 5.4 years (interquartile range 3.8–7.6) after stoma formation. In the total sample, leakage (58%) and troublesome odour (55%) were most prevalent followed by skin problems (27%) and pain (21%). Stoma-related problems were more prevalent in patients with parastomal bulging. A total of 431 (19%) reported feeling restricted in daily activities in life with a stoma. Leakage, odour, skin problems, stool consistency, and frequent appliance changes were significantly associated with restrictions in daily life. The highest risk of experiencing restrictions was seen for patients having odour (OR 2.74 [95% CI: 1.99–3.78]) more than once a week and skin problems (OR 1.77 [95% CI: 1.38–2.27]).
Conclusion
In this large cohort with rectal cancer, stoma-related problems were highly prevalent and impacted daily life. Supportive care strategies should entail outreach to patients with a long-term stoma.