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.
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