Hypothesis / aims of study
The study aims were to describe self-management of anal incontinence (AI), referred to as accidental bowel leakage for study participants, and explore interest in the use of a mobile health application (mHealth app) for supporting AI self-management among community-living women.
Study design, materials and methods
The study had an observational/descriptive design. Women (18+ years) diagnosed with AI who were patients seen in a urogynecology practice within the past 6 years were identified from administrative records. The women were mailed a cover letter explaining the study and elements of informed consent and a survey containing 8 multiple-choice questions and an open-ended prompt for comments. There were 4 questions about AI self-management, 2 questions about interest in an mHealth app to support AI self-management if one were created, 1 question about use of other mHealth apps, and 1 question about the patient’s age group. Two sets of mailings were sent: the first went to 300 patients from the past two years, and the second mailing went to 575 patients from the past 3 to 6 years. Patients completed the survey anonymously and returned it to the investigators by mail. Descriptive statistics and graphical representations were used to summarize and analyze collected data.
Survey responses were received from 161 women (18% response rate). The greatest percentage of participants were aged 61-70 years (39%) followed by 71-80 years (29%), 51-60 years (18%), > 80 years (8%), 41-50 years (4%), and 18-30 years (1%). Data of the two youngest age groups were analyzed together due to their small percentages. Before seeking care from a clinician, the majority of participants had been trying to manage their AI for years (60%) or months (19%).
Regarding self-management of AI, nearly half of the participants (47%) “did not know anything,” and 30% “knew a little” about self-management before visiting a clinician. Only 4% “knew a lot” while 20% “knew some things” regarding AI self-management. Of those who have been trying to self-manage their AI (n=132), 37% of participants reported that it was not effective, and 39% reported it was “a little effective”. Only 5% thought their self-management of AI was “very effective” while 19% thought it was “somewhat effective”.
Regarding interest in using an mHealth app to help with the management plan for AI recommended by their clinician, half (50%) of the participants indicated they had “a lot of” interest in an mHealth app, 30% had “some” interest, 12% had “a little” interest, and 9% had “no” interest. When the women were asked if they would use an mHealth app for self-managing AI before contacting a clinician about the problem, the same percentage (27%) indicated that they would be “very likely” or “not likely” to do so; 14% and 20% of participants said that they would be “somewhat likely” or “likely” to do so, respectively. The vast majority of participants (89%) thought that it was “very important” to have guidance and support for managing AI.
Figure 1 shows the level of interest in using an mHealh app to support self-management of AI by age group. All age groups had “some interest”, and interest was highest in those 71-80 years old. More than a third of participants currently use or had used some type of health-related mobile app (38%, n=58). Among these participants, 84% had “a lot” or “some interest” in using an app supporting AI self-management, and 16% had “a little” or “no” interest. The importance of having guidance/support for managing AI by various levels of knowledge and effectiveness of self-management efforts is shown in Figure 2.
Interpretation of results
Most women with AI lacked knowledge about AI self-management before visiting a clinician, and self-management efforts were only somewhat effective. Women tried to self-manage AI and waited before consulting a clinician about the problem. Women with AI highly valued guidance and support to assist them in managing their condition regardless of their level of knowledge or effectiveness of self-management. There was good interest especially among middle-aged and older women in using an mHealth app to support AI self-management if one were created. Some women would prefer to use such an app in collaboration with a clinician while others would try it on their own before visiting one. Women who previously used other mHealth apps were more interested in using an app about AI self-management if one were developed than women who had not used apps.