Browsing by Subject "Spinal dysraphism"

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    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 issue
    (Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of Medicine
    Introduction: Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool. Methods: We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. Results: Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI). Comment: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. Conclusions: Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.
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    Building a prototype of a continence goal-selection tool for children with spina bifida: patient, parental and urology provider recommendations
    (Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of Medicine
    Introduction: No tools exist to help children with spina bifida (SB) describe their incontinence concerns and to help their providers account for them when evaluating management success. Our aim was to understand patients', parents', and clinicians' preferences about how a SB continence goal-selection tool (MyGoal-C) should look and function, and to create a tool prototype. Methods: We used a qualitative research approach integrated with human-centered design methods. We recruited children with SB (8-17 years old), parents ( ≥ 18 years old) of children with SB (8-17 years old) in clinic and online, and urology healthcare providers at our institution. We surveyed children and parents, and conducted parent and provider Zoom-based prototyping sessions to iteratively design the app. Design researchers analyzed online activities using affinity diagramming, group analysis and modeling activities. Provider sessions were analyzed with qualitative thematic analysis based on grounded theory. Recruitment continued until saturation was reached. Results: Thirteen children with SB participated (median age: 10 years old, 4 female, 9 shunted, 10 using bladder catheterizations). Thirty-seven parents participated (33 mothers, median age: 43 years old). Children and parents unanimously recommended an app and their comments generated 6 major theme domains: goal-setting process, in-app content, working toward goals, urology provider check-in, app customization, and using big data to improve future functionality. Twenty-one of the parents participated in 3 prototyping sessions with 6 breakout groups. The remaining 16 parents and 13 children then completed the Prototype Testing Survey, leading to a refined prototype and a visual flow map of the app experience (Figure). Feedback from 11 urology healthcare providers (7 female, 6 advanced practice providers) generated 8 themes: patient engagement/autonomy, clearly displaying results, integration into clinic workflow, not increasing clinical staff burden, potential clinician bias, parental involvement, limitations of the app, and future app adaptation. These cumulative data allowed for a construction of a final app prototype. Comment: Findings of our study lay the foundation for creating a goal-selection app that meets preferences and needs of children, parents, and providers. Next steps involve building the app, testing its usability and assessing it prospectively in a clinical setting. Conclusions: Children with SB and parents preferred an app to help them set and track continence goals. All stakeholders, including urology providers, offered complementary and mutually reinforcing feedback to guide the creation of an app prototype that would ultimately be integrated into a clinic visit.
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    Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study
    (IOS Press, 2023) Szymanski, Konrad M.; Adams, Cyrus M.; Alkawaldeh, Mohammad Y.; Austin, Paul F.; Bowman, Robin M.; Castillo, Heidi; Castillo, Jonathan; Chu, David I.; Estrada, Carlos R.; Fascelli, Michele; Frimberger, Dominic C.; Gargollo, Patricio C.; Hamdan, Dawud G.; Hecht, Sarah L.; Hopson, Betsy; Husmann, Douglas A.; Jacobs, Micah A.; MacNeily, Andrew E.; McLeod, Daryl J.; Metcalfe, Peter D.; Meyer, Theresa; Misseri, Rosalia; O'Neil, Joseph; Rensing, Adam J.; Routh, Jonathan C.; Rove, Kyle O.; Sawin, Kathleen J.; Schlomer, Bruce J.; Shamblin, Isaac; Sherlock, Rebecca L.; Slobodov, Gennady; Stout, Jennifer; Tanaka, Stacy T.; Weiss, Dana A.; Wiener, John S.; Wood, Hadley M.; Yerkes, Elizabeth B.; Blount, Jeffrey; Pediatrics, School of Medicine
    Purpose: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD. Methods: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics. Results: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p = >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47). Conclusion: COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.
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    The feasibility of using ecological momentary assessment to understand urinary and fecal incontinence experiences in adults with spina bifida: A 30-day study
    (Public Library of Science, 2023-11-30) Hensel, Devon J.; Young, Audrey I.; Szymanski, Konrad M.; Pediatrics, School of Medicine
    In this paper, we evaluate the feasibility of using ecological momentary assessment (EMA) to understand urinary (UI) and fecal (FI) incontinence in adults with spina bifida (SB). As part of a larger 30-day prospective study to understand the incontinence in adults with SB (N = 89), participants completed end-of-day EMA diaries assessing the frequency and context of UI and FI. We used these data to assess the method feasibility across six dimensions: (a) compliance, or data entry which is consistent with study protocol and substantially complete; (b) reactivity, or behavior change attributed to study participation; (c) participant acceptability, or convenience and ease of method beneficial to compliance; (d) data capture, or the volume of incontinence behaviors collected; (e) the accuracy of incontinence reports; and f) participant-provided feedback for future studies. Participants were highly compliant with diary entry protocol and schedule: submitting 95.7% (2576/2700) of the expected total daily entries. The average completion time was two minutes. Neither the total number of submissions nor the completion time varied by demographic characteristics or health history. A sufficient volume of incontinence and affective outcomes were captured, with small downtrends in reporting of UI and affect over time. Exit survey recall was highly correlated with diary reports. Participants found the methodology to be acceptable, reported their experiences honestly, enjoyed and felt comfortable participating in the study and would engage in similar study in the future. Accurate information about the daily context of UI and FI is a key factor in the success of intervention or education programs relying on this information. Our findings demonstrate that EMA is a feasible way to describe UI and FI in adults with SB.
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    Transgluteal CT-Guided Percutaneous Renal Access for Percutaneous Nephrolithotomy in a Pelvic Horseshoe Kidney
    (Mary Ann Liebert, Inc., 2015-10-01) Mullins, Ryan J.; Dauw, Casey A.; Borofsky, Michael S.; York, Nadya; Patel, Aashish A.; Lingeman, James E.; Department of Urology, IU School of Medicine
    CT-guided percutaneous renal access has been described as a safe and effective access technique in patients with complex anatomy, including ectopic kidney, retrorenal colon, spinal dysraphism, hepatomegaly, and splenomegaly. In comparison to conventional intraoperative fluoroscopic-guided access, CT imaging allows for delineation of surrounding structures that are at risk for injury during percutaneous access. However, previous reports indicate that pelvic kidneys might be inaccessible percutaneously without laparoscopic assistance. Herein, we present a novel transgluteal route to renal access for percutaneous nephrolithotomy (PCNL) in a patient with a pelvic horseshoe kidney and severe spinal deformity.