Qual Life Res. 2024 Aug 14. doi: 10.1007/s11136-024-03756-3. Online ahead of print.

S L Assmann ^1 2 3, D Keszthelyi ^4 5, S O Breukink ^6 5 7, M L Kimman ⁸

Author information

¹Department of Surgery and Colorectal Surgery, Maastricht University Medical Centre, Maastricht, The Netherlands. s.assmann@maastrichtuniversity.nl.

²Department of Gastroenterology-Hepatology, Maastricht University Medical Centre, Maastricht, The Netherlands. s.assmann@maastrichtuniversity.nl.

³Research Institute of Nutrition and Translational Research in Metabolism Metabolism (NUTRIM), Maastricht University, Maastricht, The Netherlands. s.assmann@maastrichtuniversity.nl.

⁴Department of Gastroenterology-Hepatology, Maastricht University Medical Centre, Maastricht, The Netherlands.

⁵Research Institute of Nutrition and Translational Research in Metabolism Metabolism (NUTRIM), Maastricht University, Maastricht, The Netherlands.

⁶Department of Surgery and Colorectal Surgery, Maastricht University Medical Centre, Maastricht, The Netherlands.

⁷Research Institute for Oncology and Reproduction (GROW), Maastricht University, Maastricht, The Netherlands.

⁸Department of Clinical Epidemiology and Medical Technology Assessment, Care and Public Health, Research Institute (CAPHRI), Maastricht University Medical Centre, Maastricht, The Netherlands.

Abstract

Purpose: Faecal incontinence (FI) is a prevalent and debilitating anorectal problem causing embarrassment, anxiety, and social isolation, diminishing quality of life. At present there is no optimal treatment option for FI. Consequently, treatments primarily focus on symptom reduction and improving quality of life. Understanding patient experiences and outcomes they seek from treatment is crucial for improving care. This study aims to explore how FI impacts patients' lives and identify important treatment outcomes as part of the development of a Core Outcome Set (COS).

Methods: Patients with FI were recruited from outpatient clinics in the Netherlands. Semi-structured interviews were performed, audio recorded, transcribed per verbatim and coded. Thematic analysis was performed to identify (sub)themes and categories relevant to the patients.

Results: Twelve interviews were conducted before saturation was reached (75% female, 25% male, mean age 63, range 39-83 year). Four main themes emerged 'Physical symptoms', 'Impact on daily life', 'Emotional impact' and 'Coping'. Patients expressed how FI severely limits daily activities and emotional wellbeing. Treatment priorities centred on resuming normal activities rather than solely on symptom reduction.

Conclusion: The impact of FI extends far beyond uncontrolled loss of faeces, affecting psychological, emotional, and social wellbeing. Patients prioritise outcomes focussed on reclaiming normalcy and independence rather than focusing on physical symptoms alone. Integrating these patient-centered outcomes in future studies could enhance treatment satisfaction and patient-perceived treatment success. Furthermore, the outcomes identified in this study can be included in a Delphi survey alongside other relevant outcomes, paving the way for the development of a COS.