Translation and validation of the international consultation on incontinence questionnaire-Bowel in Danish men and women with pelvic floor disorders.

BACKGROUND: We lack a comprehensive validated Danish questionnaire to evaluate symptoms and bother regarding anal incontinence (AI). The International Consultation on Incontinence Questionnaire-Bowel (ICIQ-B) is an internationally recommended questionnaire containing 21 items, of which 17 are scored in three subscales: bowel pattern, bowel control, and quality of life. AIMS: To translate the ICIQ-B into Danish and to validate the Danish version in pelvic floor disorder (PFD) patients with and without AI. METHODS: The ICIQ-B was translated by a panel of healthcare professionals followed by cognitive interviews with PFD patients attending an outpatient clinic. Revisions were undertaken using an iterative process, and a backward translation was performed for the final version. Pretesting and test-retest of the ICIQ-B were done online and administrated together with the St. Mark's score. Content, structural, convergent and discriminant validity were assessed, followed by an evaluation of relative and absolute reliability, including the smallest real difference (SRD). RESULTS: Thirty cognitive patient interviews were performed, resulting in three revisions. The Danish ICIQ-B was found to be comprehensible and relevant but lacked items addressing the psychological impact of bowel problems. The ICIQ-B was completed online by 227 PFD patients with and without AI. The structural validity of the bowel pattern subscale could not be retrieved. Patients indicating AI had significantly higher ICIQ-B and St. Mark's scores than patients without AI, and ICIQ-B subscale scores correlated moderately with St. Mark's scores. Internal consistency was good except for the bowel pattern subscale. Seventy-six patients completed test-retest. Relative reliability was excellent for subscale scores and moderate or good for single items except for the item concerning stool consistency, which was weak. The SRD was found to be 2.8 for the bowel pattern subscale, 4.3 for bowel control subscale, and 3.6 for the quality-of-life subscale. CONCLUSION: The Danish version of the ICIQ-B can be used for Danish patients with PFD, and discriminant validity is good. The structural validity and the internal consistency of the bowel pattern subscale are questionable, indicating that some items do not represent the underlying construct. Test-retest reliability of the ICIQ-B is acceptable, but the change needed to reflect a real change above the measurement error in each subscale is three to four points.

Coping strategies and considerations regarding low anterior resection syndrome and quality of life among patients with rectal cancer; a qualitative interview study.

Introduction: Low anterior resection syndrome (LARS) is defined as disordered bowel function following rectal resection, which is detrimental to quality of life (QoL). A recent international consensus definition of LARS stresses the importance of focusing on both the symptoms and the consequences that the symptoms have for the individual patient as studies indicate that LARS has a negative impact on patients' QoL. However, an ongoing PROM study investigating late sequelae after rectal cancer finds that a minor proportion of patients scoring major LARS experience none or only little impact on quality of life. Aim: The aim of this study was to identify patients' considerations and coping strategies to establish why the burden caused by major LARS had little or no influence on their QoL. Materials and methods: This was a qualitative interview study based on 21 semi-structured individual telephone interviews with patients treated for rectal cancer. Data were analysed using a hermeneutic inspired thematic analysis. Results and conclusion: Three themes emerged from the analysis; Adapting new life situation, Altering life perception and the Importance of relationships. Major LARS and its consequences following rectal cancer may be managed or altered by adopting problem-focused and emotion-focused coping strategies. Maintaining a positive attitude and having a good network of family and friends constitute a surplus, allowing patients to cope with the need for changed behaviour and appreciate the life that they have been given. Accepting that major LARS and its consequences cause limitations in life allowed patients to change their normality threshold over time.