Subject(s)
Urinary Incontinence, Stress , Urinary Incontinence , Feasibility Studies , Female , HumansABSTRACT
INTRODUCTION AND HYPOTHESIS: Fewer than 30% of women with accidental bowel leakage (ABL) seek care, despite the existence of effective, minimally invasive therapies. We developed and validated a condition-specific instrument to assess barriers to care-seeking for ABL in women. METHODS: Adult women with ABL completed an electronic survey about condition severity, patient activation, previous care-seeking, and demographics. The Barriers to Care-seeking for Accidental Bowel Leakage (BCABL) instrument contained 42 potential items completed at baseline and again 2 weeks later. Paired t tests evaluated test-retest reliability. Factor analysis evaluated factor structure and guided item retention. Cronbach's alpha evaluated internal consistency. Within and across factor item means generated a summary BCABL score used to evaluate scale validity with six external criterion measures. RESULTS: Among 1,677 click-throughs, 736 (44%) entered the survey; 95% of eligible female respondents (427 out of 458) provided complete data. Fifty-three percent of respondents had previously sought care for their ABL; median age was 62 years (range 27-89); mean Vaizey score was 12.8 (SD = 5.0), indicating moderate to severe ABL. Test-retest reliability was excellent for all items. Factor extraction via oblique rotation resulted in the final structure of 16 items in six domains, within which internal consistency was high. All six external criterion measures correlated significantly with BCABL score. CONCLUSIONS: The BCABL questionnaire, with 16 items mapping to six domains, has excellent criterion validity and test-retest reliability when administered electronically in women with ABL. The BCABL can be used to identify care-seeking barriers for ABL in different populations, inform targeted interventions, and measure their effectiveness.
Subject(s)
Fecal Incontinence/psychology , Patient Acceptance of Health Care/psychology , Surveys and Questionnaires/standards , Adult , Aged , Aged, 80 and over , Factor Analysis, Statistical , Fecal Incontinence/therapy , Female , Humans , Middle Aged , Psychometrics , Reproducibility of ResultsABSTRACT
INTRODUCTION AND HYPOTHESIS: Fewer than 50 % of women with urinary incontinence (UI) and 30 % of women with accidental bowel leakage (ABL) seek care. We sought to describe barriers to care seeking for ABL to inform development of an instrument to measure these barriers. METHODS: We recruited women with ABL with varied prior care-seeking experiences to participate in focus groups and cognitive interviews so we could understand factors that may have prevented or delayed care seeking. Focus groups continued until thematic saturation was reached using conventional content analysis. Final themes were established and characterized by comparing within and across the focus groups and with previously described UI and ABL care-seeking barriers. Cognitive interviews were confirmatory. RESULTS: Thirty-nine women (aged 46-85) participated in six focus groups and ten cognitive interviews; 89 % were white, 8 % African American, and 3 % Latina. We identified 12 barriers to seeking care for ABL: (1) Lack of knowledge about the condition; (2) Lack of knowledge about treatment; (3) Fear of testing/treatment; (4) Normative thinking; (5) Avoidance/denial; (6) Life impact; (7) Embarrassment/shame; (8) Self-blame; (9) Stigma; (10) Isolation; (11) Provider barriers; (12) Access limitations. These 12 barriers encompassed three overarching themes: the internalized self in relation to ABL; perceptions about ABL and its treatments; and interaction with the healthcare system. CONCLUSIONS: ABL care-seeking barriers are similar to those described for UI, with the notable addition of lack of knowledge that ABL is a medical condition experienced by others. Interventions to promote access to effective treatments for ABL should include information about prevalence and treatability.