The association of daily urinary and bowel incontinence with emotional functioning in young adults with spina bifida: an ecological momentary assessment study
DOI:
https://doi.org/10.2340/jrm.v58.45594Keywords:
urinary and faecal incontinence, spina bifida, emotions, function, health-related quality of life (HRQOL), quantitativeAbstract
Objective: Urinary and bowel incontinence are common in young adults with spina bifida and may affect emotional functioning and health-related quality of life. Prospective data describing day-level incontinence experiences in this population are limited. This study used ecological momentary assessment to characterize daily variability in urinary and bowel incontinence and to examine associations with mood, incontinence-related anxiety, and health-related quality of life.
Methods: In a 30-day ecological momentary assessment study of adults with spina bifida and recent incontinence, young adults with spina bifida (n = 23; ages 18–26) completed 643 end-of-day assessments. Daily measures included urinary and bowel incontinence frequency, amount, dry intervals, management independence, activity avoidance, positive and negative mood, and incontinence-related anxiety. Health-related quality of life was assessed at study completion. Analyses were exploratory and used nonparametric methods appropriate for ordinal and intensive repeated measures data.
Results: Urinary incontinence was reported on 54.1% of study days and bowel incontinence on 20.8%. For urinary incontinence, greater frequency, shorter dry intervals, larger amounts, and activity avoidance were associated with lower positive mood, higher negative mood, and greater urinary incontinence-related anxiety. For bowel incontinence, greater symptom severity, management dependence, and activity avoidance were associated with poorer mood and higher bowel incontinence-related anxiety. Multiple day-level incontinence characteristics and daily emotional responses were associated with lower end-of-month health-related quality of life.
Conclusion: In young adults with spina bifida, day-level incontinence burden is associated with same-day emotional functioning and longer-term health-related quality of life. These findings highlight the relevance of day-level symptom variability for rehabilitation assessment and individualized continence management.
Downloads
References
Spina Bifida Association. What is spina bifida? Alexandria, VA: Spina Bifida Association; 2022.
Bendt M, Gabrielsson H, Riedel D, Hagman G, Hultling C, Franzén E, et al. Adults with spina bifida: a cross-sectional study of health issues and living conditions. Brain Behav 2020; 10: e01736. DOI: https://doi.org/10.1002/brb3.1736
Szymanski KM, Misseri R, Whittam B, Raposo S-M, King SJ, Kaefer M, et al. QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument. Quali Life Res 2015; 24: 2355–2364.
Hensel DJ, Young AI, Szymanski KM. The feasibility of using ecological momentary assessment to understand urinary and fecal incontinence experiences in adults with spina bifida: a 30-day study. PLoS One 2023; 18: e0292735. DOI: https://doi.org/10.1371/journal.pone.0292735
Wagner R, Linroth R, Gangl C, Mitchell N, Hall M, Cady R, et al. Perception of secondary conditions in adults with spina bifida and impact on daily life. Disabil Health J 2015; 8: 492–498. DOI: https://doi.org/10.1016/j.dhjo.2015.03.012
Sawin KJ, Margolis RH, Ridosh MM, Bellin MH, Woodward J, Brei TJ, et al. Self-management and spina bifida: a systematic review of the literature. Disabil Health J 2021; 14: 100940. DOI: https://doi.org/10.1016/j.dhjo.2020.100940
Szymanski KM, Misseri R, Whittam B, Raposo SM, King SJ, Kaefer M, et al. QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument. Qual Life Res 2015; 24: 2355–2364. DOI: https://doi.org/10.1007/s11136-015-0988-5
Szymanski KM, Cain MP, Whittam B, Kaefer M, Rink RC, Misseri R. All incontinence is not created equal: impact of urinary and fecal incontinence on quality of life in adults with spina bifida. J Urol 2017; 197: 885–891. DOI: https://doi.org/10.1016/j.juro.2016.08.117
Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 2001; 34: 114–120. DOI: https://doi.org/10.1159/000056005
Ridosh MM, Adams W, Magaña F, Sawin KJ, Holmbeck GN. Trajectories of self-management and independence in youth with spina bifida: demographic predictors of growth. Child Care Health Dev 2023; 49: 508–517. DOI: https://doi.org/10.1111/cch.13065
Logan LR, Sawin KJ, Bellin MH, Brei T, Woodward J. Self-management and independence guidelines for the care of people with spina bifida. J Pediatr Rehabil Med 2020; 13: 583–600. DOI: https://doi.org/10.3233/PRM-200734
Choi EK, Park J, Kim K, Bae E, Ji Y, Yang SH, et al. Factors affecting the transition to adulthood of Korean young adults with spina bifida: a qualitative study. BMC Nurs 2023; 22: 46. DOI: https://doi.org/10.1186/s12912-023-01194-z
Talari K, Goyal M. Retrospective studies: utility and caveats. J Roy Coll Physicians Edinb 2020; 50: 398–402. DOI: https://doi.org/10.4997/jrcpe.2020.409
Hensel DJ, Fortenberry JD, Harezlak J, Craig D. The feasibility of cell phone based electronic diaries for STI/HIV research. BMC Med Res Methodol 2012; 12: 75. DOI: https://doi.org/10.1186/1471-2288-12-75
Roth AM, Hensel DJ, Fortenberry JD, Garfein RS, Gunn JK, Wiehe SE. Feasibility and acceptability of cell phone diaries to measure HIV risk behavior among female sex workers. AIDS Behav 2014: 1–11. DOI: https://doi.org/10.1007/s10461-014-0718-y
Shiffman S, Stone A, Hufford M. Ecological momentary assessment. Annu Rev Clin Psychol 2008; 4: 1–32. DOI: https://doi.org/10.1146/annurev.clinpsy.3.022806.091415
Szymanski KM, Misseri R, Hensel DJ. Accuracy in reporting incontinence in adults with spina bifida: a pilot study. J Pediatr Urol 2024 20: 483.e1–483.e8. DOI: https://doi.org/10.1016/j.jpurol.2024.02.016
Szymanski KM, Misseri R, Whittam B, Kaefer M, Rink RC, Cain MP. Quantity, not frequency, predicts bother with urinary incontinence and its impact on quality of life in adults with spina bifida. J Urol 2016; 195: 1263–1269. DOI: https://doi.org/10.1016/j.juro.2015.07.108
Lim S-W, Yi M. Illness experiences of adults with spina bifida: protecting the whole self. Asian Nurs Res 2021; 15: 67–75. DOI: https://doi.org/10.1016/j.anr.2020.12.001
Gabrielsson H, Hultling C, Cronqvist A, Asaba E. Views on everyday life among adults with spina bifida: an exploration through photovoice. Int J Qual Stud Health Well-being 2020; 15: 1830702. DOI: https://doi.org/10.1080/17482631.2020.1830702
Szymanski KM, Misseri R, Hensel DJ. Day-to-day variations and effects of urinary and fecal incontinence among adults with spina bifida: an ecological momentary assessment diary pilot study. J Pediatr Urol 2025; 21: 411–419. DOI: https://doi.org/10.1016/j.jpurol.2024.11.001
Szymanski KM, Carroll AE, Misseri R, Moore CM, Hawryluk BA, Wiehe SE. A patient-and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issues. J Pediatr Urol 2023; 19: 181–189. DOI: https://doi.org/10.1016/j.jpurol.2022.10.027
Russell MA, Gajos JM. Annual Research Review: Ecological momentary assessment studies in child psychology and psychiatry. J Child Psychol Psychiatry 2020; 61: 376–394. DOI: https://doi.org/10.1111/jcpp.13204
Joseph NT, Jiang Y, Zilioli S. Momentary emotions and salivary cortisol: a systematic review and meta-analysis of ecological momentary assessment studies. Neurosc Biobehav Rev 2021; 125: 365–379. DOI: https://doi.org/10.1016/j.neubiorev.2021.02.042
Hufford M. Special methodological challenges and opportunities in ecological momentary assessment. In: Stone AA, Shiffman S, Atienza A, Nebeling L, editors. The science of real-time data capture: self-reports in health research Oxford: Oxford University Press; 2007, p. 54–75. DOI: https://doi.org/10.1093/oso/9780195178715.003.0004
Todd KR, Shaw RB, Kramer JL, Martin Ginis KA. Using ecological momentary assessment to evaluate neuropathic pain experienced by adults with SCI: recommendations and participant perceptions. Disabil Rehabil 2021; 43: 2439–2346. DOI: https://doi.org/10.1080/09638288.2019.1702724
May M, Junghaenel DU, Ono M, Stone AA, Schneider S. Ecological momentary assessment methodology in chronic pain research: a systematic review. J Pain 2018; 19: 699–715. DOI: https://doi.org/10.1016/j.jpain.2018.01.006
Stone AA, Shiffman SS. Ecological validity for patient reported outcomes. In: Steptoe A, editor. Handbook of behavioral medicine. New York: Springer; 2010, p. 99–112. DOI: https://doi.org/10.1007/978-0-387-09488-5_8
Perski O, Keller J, Kale D, Asare BY-A, Schneider V, Powell D, et al. Understanding health behaviours in context: a systematic review and meta-analysis of ecological momentary assessment studies of five key health behaviours. Health Psychol Rev 2022; 16: 576–601. DOI: https://doi.org/10.1080/17437199.2022.2112258
Morris I, Shiffman S, Beckjord E, Ferguson SG. Ecological momentary assessment and technological advances in clinical care. In: Potenza MN, Faust KA, Faust D, editors. The Oxford handbook of digital technologies and mental health. Oxford: Oxford University Press; 2020, p. 0. DOI: https://doi.org/10.1093/oxfordhb/9780190218058.013.24
Hensel DJ, Young AI, Szymanski KM. Daily activity
avoidance in the context of urinary and fecal incontinence among young adults with Spina Bifida: Preliminary results from an ecological momentary assessment study. PLoS One 2026; 21: e0341057. DOI: https://doi.org/10.1371/journal.pone.0341057
Hensel DJ. Ecological momentary assessment to understand the impact of daily urinary and fecal incontinence on well-being among adults with spina bifida: Open Science Framework [distributor]; 2023. Available from: https://osf.io/gefqx/.
Van Voorhees EE, Dennis PA, Elbogen EB, Fuemmeler B, Neal LC, Calhoun PS, et al. Characterizing anger-related affect in individuals with posttraumatic stress disorder using ecological momentary assessment. Psychiatr Res 2018; 261: 274–280. DOI: https://doi.org/10.1016/j.psychres.2017.12.080
Lachin JM. Nonparametric statistical analysis. JAMA 2020; 323: 2080–2081. DOI: https://doi.org/10.1001/jama.2020.5874
Mukaka MM. Statistics corner: a guide to appropriate use of correlation coefficient in medical research. Malawi Med J 2012; 24: 69–71.
StataCorp LP. Stata. 19.0 ed. College Station, TX. StataCorp LLP; 2025.
Guan KW, Adlung C, Keijsers L, Smit CR, Vreeker A, Thalassinou E, et al. Just-in-time adaptive interventions for adolescent and young adult health and well-being: protocol for a systematic review. BMJ Open 2024; 14: e083870. DOI: https://doi.org/10.1136/bmjopen-2024-083870
Szymanski KM, Cain MP, Whittam B, Kaefer M, Rink RC, Misseri R. Incontinence affects health-related quality of life in children and adolescents with spina bifida. J Pediatr Urol 2018; 14: 279.e1–.e8. DOI: https://doi.org/10.1016/j.jpurol.2018.02.021
van Os J, Verhagen S, Marsman A, Peeters F, Bak M, Marcelis M, et al. The experience sampling method as an mHealth tool to support self-monitoring, self-insight, and personalized health care in clinical practice. Depress Anxiety 2017; 34: 481–493. DOI: https://doi.org/10.1002/da.22647
McKeon A, McCue M, Skidmore E, Schein M, Kulzer J. Ecological momentary assessment for rehabilitation of chronic illness and disability. Disabil Rehabil 2018; 40: 974–987. DOI: https://doi.org/10.1080/09638288.2017.1280545
Schwartz S, Schultz S, Reider A, Saunders EF. Daily mood monitoring of symptoms using smartphones in bipolar disorder: a pilot study assessing the feasibility of ecological momentary assessment. J Affect Disord 2016; 191:88–93. DOI: https://doi.org/10.1016/j.jad.2015.11.013
Downloads
Published
How to Cite
License
Copyright (c) 2026 Devon J. Hensel, Audrey I. Young, Konrad M. Szymanski
This work is licensed under a Creative Commons Attribution 4.0 International License.
All digitalized JRM contents is available freely online. The Foundation for Rehabilitation Medicine owns the copyright for all material published until volume 40 (2008), as from volume 41 (2009) authors retain copyright to their work and as from volume 49 (2017) the journal has been published Open Access, under CC-BY-NC licences (unless otherwise specified). The CC-BY-NC licenses allow third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for non-commercial purposes, provided proper attribution to the original work.
From 2024, articles are published under the CC-BY licence. This license permits sharing, adapting, and using the material for any purpose, including commercial use, with the condition of providing full attribution to the original publication.
