200. “No one has ever asked me about this”: Results From an EMA Diary Feasibility Study to Understand Daily Incontinence Experiences in Adolescents and Young Adults With Spina Bifida

Increased survival time means that adolescents and young adults with spina bifida (AYA-SB) must learn to manage common spina bifida (SB) associated health conditions, including urinary (UI) and fecal (FI) incontinence, as they move into adulthood. We conducted the first ecological momentary assessment-focused (EMA) study to assess the daily occurrence and impact of incontinence among AYA-SB.

Data were collected as part of a larger 30-day EMA study (R21DK121355) of daily well-being and incontinence among a cohort of adults with SB. We drew a subsample of SYS (N=31 [34.0% of larger sample; 18-29 years of age: median HS education; 83.1% White; 71.0% cisgender female; 52% VPS; 48% community ambulators; 86% heterosexual; 33% single and not dating). We examined daily incontinence frequency (none-6+ times), amount (none-a lot), time-dry (none-4+ times), management (independent-needed a lot of help), activities avoided when UI/FI happened or when UI/FI could happen. AYA also reported affect around actual or possible incontinence (4-item scale; e.g. “How [anxious/bothered/worried/frustrated] were you about [the possibility] of leaking [urine/stool]?’) as well as positive and negative mood (PANAS). Unconditional random intercept mixed effects ordinal or binary logistic regression evaluated any significant day-to-day variability in incontinence frequency/context, intraclass correlation coefficient estimates contextualized effect sizes. Mixed effects regression was also used to examine the impact of incontinence frequency/context on daily affect.

Participants contributed 98.6% (770/780) of expected diaries, with an average of 1.6 minutes for submission/entry. 70% of diaries were associated with incontinence (469/770). AYA-SB did not significantly vary in EMA completion rate or in completion time vs. the larger sample (p=0.569-0.989) or on days with vs. without incontinence (p=0.356-0.767). We observed no response effects in any outcome over time (p=0.288-0.876). All incontinence outcomes - including daily UI/FI frequency, amount, time dry, management, activity avoidance and bother - exhibited significant day-to-day variability (all p<.001), with moderate to large effect sizes (ICC: 0.489-0.989), meaning that incontinence is a fluid experiences, with daily shifts attributable to between-person characteristics. Greater daily frequency of both UI and FI were associated with lower daily positive mood (OR=0.47-0.68) and more time dry in between urine accidents was associated with higher daily positive mood (OR=3.82). Needing more help with managing either UI or FI leaks was linked to higher daily negative mood (OR=1.05-11.18). Actual UI and worry about UI preventing any activities predicted higher negative mood (OR=7.19-87.59). Higher anxiety, bother, frustration and worry about having UI and FI was positively associated with negative mood (OR=1.03-1.06). 85%-100% of AYA-SB reported enjoying participating, perceiving compensation to be fair, participation being easy, being truthful, receiving adequate communication and support from study staff and wanting to participate again in a similar study.

EMA is a feasible method to understand day-to-day incontinence experiences in AYA-SB. Participants were highly compliant with study protocol and provided a sufficient range and volume of incontinence-related data. Participants found the methodology to be acceptable, enjoyed and felt comfortable participating in the study. These data provide an important step forward in engaging adolescent-centered methodologies to understand disability related health experiences.

NIDDK R21DK121355.