Devon J. Hensel

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.

Theoretical frameworks suggest that romantic relationship satisfaction may influence sexual communication self-efficacy, which involves the confidence to discuss personal sexual health goals and plays a key role in HIV prevention among partnered adolescent males who have sex with males (MSM). The current study examined romantic relationship satisfaction as a correlate of sexual communication self-efficacy in a sample of partnered adolescent MSM. Participants (n = 50) completed self-report measures including romantic relationship satisfaction and sexual communication self-efficacy. Domains of sexual communication self-efficacy included: sexual history, contraception, condom negotiation, negative sexual messages, and positive sexual messages. Multivariable linear regression models were conducted to examine study aims. Relationship satisfaction was positively associated with self-efficacy in communicating about sexual history, contraception, and negative and positive sexual messages, with effect sizes ranging from moderate to large. These findings shed light on pathways often assumed in HIV intervention programs, emphasizing how romantic relationships are associated with adolescents' confidence in discussing sexual health with partners. Interventions aiming to improve sexual communication may be more effective if they include content on enhancing romantic relationship satisfaction.

Although studies suggest that young adults with spina bifida (YASB) often avoid important daily activities (ADL) due to urinary (UI) and fecal (FI) incontinence, no research has prospectively examined how often ADL avoidance occurs, or the context in which it occurs. In this paper, we used ecological momentary assessment (EMA) over 30 days to describe: 1) the frequency of avoidance; 2) the activities YASB most commonly avoid; and 3) preliminary association of daily avoidance with affect, incontinence anxiety and health-related quality of life (HRQoL). As part of a larger 30-day prospective study designed to understand the incontinence in adults with SB (N = 89), participants completed an end-of-day EMA tracking daily ADL avoidance on days when they were worried about possible UI or FI and on days when they had actual UI or FI. Additional day-level measures were: affect and incontinence anxiety. HRQoL was reported in beginning- and end-of-study surveys. We drew a subsample of YASB participants (18–27 years; N = 23 of total 88 participants). ADL avoidance was most frequent with actual FI (20.5%) and least frequent with worry about FI (3.5%, p = 0.02) (UI worry: 8.3; actual UI: 8.9%, p = 0.546). The most common ADL avoided were eating, drinking and spending time with family/friends. Negative mood and incontinence anxiety were significantly higher on days with all types of avoidance. Higher baseline HRQoL was associated with fewer in-study ADLs avoided, which were in turn associated with higher end-of-study HRQoL. Our data suggest that YASB avoid key activities of daily living (e.g., eating, drinking, seeing family/friends) both when they worry about possible incontinence that may but does not occur, and when they experience actual incontinence. Tailored interventions addressing actual incontinence and worry about possible incontinence incorporating daily mood or incontinence anxiety may minimize ADL avoidance and its impact on long-term HRQoL.

Background Studies suggest that young adults with spina bifida (YASB) often avoid important daily activities (ADL) due to urinary (UI) and fecal (FI) incontinence, but no research has prospectively examined how often ADL avoidance occurs, or the context in which it occurs. We used ecological momentary assessment (EMA) over 30 days to describe the frequency of avoidance, the activities YASB most commonly avoid, and the preliminary association of daily avoidance with affect, incontinence anxiety and health-related quality of life (HRQoL). Method We analyzed a subsample of YASB participants (18 – 27 years; N=23 of total 88 participants) who completed a larger 30-day prospective EMA study examining the daily prevalence and context of UI and FI in adults with SB. Participants completed an end-of-day EMA tracking daily ADL avoidance on days when they were worried about possible UI or FI and on days when the had actual UI or FI. Additional day-level measures were affect and incontinence anxiety. HRQoL was reported in beginning- and end-of-study surveys. Results YASB contributed 643 total EMAs; 57.5% had any incontinence. ADL avoidance was most frequent with actual FI (20.5%) and least frequent with worry about FI (3.5%, p=0.02) (UI worry: 8.3; actual UI: 8.9%, p=0.546). The most common basic ADL avoided were eating, drinking and spending time with family/friends. Negative mood and incontinence anxiety were significantly higher on days with all types of avoidance. Higher baseline HRQoL was associated with fewer in-study ADLs avoided, which were in turn associated with higher end-of-study HRQoL. Discussion YASB avoid key activities of daily living (e.g., eating, drinking, seeing family/friends) both when they worry about possible incontinence that may but does not occur, and when they experience actual incontinence. In other words, a dry day is not a day free of the negative effects of incontinence. ADL avoidance patterns vary between UI and FI. Tailored interventions addressing actual incontinence and worry about possible incontinence incorporating daily mood or incontinence anxiety can potentially minimize ADL avoidance and its impact on long-term HRQoL. Discussion and Implications YASB avoid key activities of daily living (e.g., eating, drinking, seeing family/friends) both when they worry about possible incontinence and when they experience actual incontinence. Tailored intervention may consider addressing daily mood or incontinence anxiety to minimize any ADL avoidance in the short term as a means to improve HRQoL in the long term.

Introduction: Common chronic health conditions associated with spina bifida (SB) may impact sexual health among adults in this population, including genital self-image (GSI), but no studies explore this topic. Aim: The primary aim of this study was to provide a preliminary psychometric assessment of the four-item Female Genital Self-Image Scale (FGSIS-4) and the five-item Male Genital Self-Image Scale (MGSIS-5) for use among adults with SB. A secondary aim was to describe the association of GSI with key demographic, health, and sexual experience characteristics. Methods: An international online survey collecting background and clinical data was administered to adults with SB over 12 months. We assessed internal consistency, construct validity, and convergent validity for GSI. Bivariate regression was used to explore the individual associations of each variable with the FGSIS-4 and MGSIS-5. Outcomes: GSI was measured using the 4-item Female Genital Self-Image Scale (FGSIS-4) and the 5-item Male Genital Self-Image Scale (MGSIS-5); sexual function measures (sexual desire and overall satisfaction) from the Female Sexual Function Index and the International Index of Erectile Function; and health-related quality of life with Quality of Life Assessment in Spina Bifida for Adults. Results: Participants (N = 217 women and N = 146 men) were primarily heterosexual and had a median partial-to-full college education. Half of all the participants were in a relationship and living independently. A third of both men and women were community ambulators, and a quarter of both reported full genital sensation. About half of the sample (women: 47.1%; men: 46.2%) reported clean intermittent catheterization (CIC). Both scales demonstrated good internal reliability (FGSIS-4: 0.845; MGSIS-5: 0.877) and a single-factor construct structure. Higher FGSIS-4 and MGSIS-5 scores correlated positively with sexual desire overall sexual satisfaction, health-related quality of life, and urinary continence but did not vary with using CIC. Clinical Implications: Because GSI negatively impacts sexual health and sexual function, clinicians treating patients with SB should consider discussing GSI as part of routine care. Strengths and Limitations: Although this research measured women’s and men’s GSI behavior in a large international sample of adults with SB, it is limited by its cross-sectional and retrospective design, as well as by its non-clinical convenience sample. Conclusion: The FGSIS-4 and MGSIS-5 show preliminary desirable psychometric properties for the measurement of GSI in the SB population.

Background: Telemedicine is an important way to fill in the access gap to in-person health care services during challenging times like pandemics. Objective: This study aimed to investigate the role that telemedicine played during the COVID-19 pandemic by multicountry comparison of the use of telemedicine prior to and during the pandemic. Methods: This study analyzes data from the second wave of the International Sexual Health and Reproductive Health study. This included data collected between April 2021 and July 2022 in 8 countries, including Armenia (n=296), Egypt (n=889), Germany (n=138), Moldova (n=311), Nigeria (n=205), Portugal (n=951), Singapore (n=13), and Spain (n=54). This study covered sociodemographics, sexual and reproductive health (SRH), and telemedicine use. Descriptive statistics and multilevel modeling were used to assess the factors influencing the use of telemedicine. Results: Overall, 2857 participants were recruited. Approximately 57.6% (n=1646) of participants had never used telemedicine prior to COVID-19 measures, while 45.9% (n=1311) of participants required health care but reported not using telemedicine services following the introduction of COVID-19 measures. In high-income countries, the most common mode reported was audio-based telemedicine services, with 283 (71.8%) and 417 (73.5%) participants doing so before and during COVID-19, respectively. This was followed by text-based telemedicine services, with 152 (38.6%) and 173 (30.5%) participants doing so before and during COVID-19, respectively. In low- to middle-income countries, many participants also reported using audio-based telemedicine services, with 288 (35.3%) and 237 (40.8%) participants doing so before and during COVID-19, respectively. This was followed by chat-based telemedicine services, with 265 (32.4%) and 217 (37.3%) participants doing so before and during COVID-19, respectively. Multilevel modeling revealed that those who were older (adjusted odds ratio [aOR] 0.99, 95% CI 0.99-1.00) and were in countries with a higher gross domestic product per capita (aOR 0.99, 95% CI 0.98-1.00) were less likely to have ever used telemedicine. Participants who were of male sex assigned at birth (aOR 0.79, 95% CI 0.65-0.96) were less likely to use telemedicine during the pandemic. Participants who perceived that they were worse off financially were more likely to have switched to telemedicine during COVID-19 (aOR 1.39, 95% CI 1.02-1.89) and were more likely to report having a poor or fair experience of telemedicine services (aOR 1.75, 95% CI 1.34-2.29). When sexual orientation was included in the model, nonheterosexual individuals were more likely to ever use telemedicine prior to COVID-19 (aOR 1.35, 95% CI 1.08-1.69), more likely to have used telemedicine during COVID-19 (aOR 1.58, 95% CI 1.24-2.02), and more likely to have switched to telemedicine during COVID-19 (aOR 1.55, 95% CI 1.09-2.21). Conclusions: Telemedicine played a key role in addressing health care needs during the COVID-19 pandemic. Age, sex, economic status, and sexual orientation influenced its use.

Purpose While school gun violence (SGV) incidents in the United States (U.S.) have risen sharply over the past decade, limited research has examined adolescent worries about SGV. We examined the frequency and correlates of SGV worry in a U.S. nationally representative sample of adolescents. Methods Data were from adolescent participants (14–17 years; N = 1017) in the 2022 National Survey of Sexual Health and Behavior, a nationally representative study of sexual health experiences of people in the U.S. SGV worry was a single 5-point item (not at all worried – extremely worried). We used both weighted descriptive statistics to examine SGV frequency and random intercept mixed effects ordinal regression to examine demographic and background impact on SGV worry. Results Nearly 75% of adolescents reported some degree of SGV worry; of these, one in five were very or extremely worried. SGV worry was significantly higher for adolescents in younger grades and among racial/ethnic minority youth, as well as for cisgender female and gender minority teens. Adolescents in higher income homes were less worried about SGV. Both teens living in metropolitan locations and teens who reported higher anxiety in the past two weeks noted higher SGV worry. Conclusions U.S. adolescents have a substantial level of worry about school gun violence. Structural interventions are needed to reduce SGV itself. Moreover, because there are detrimental long-term impacts of prolonged worry, targeted interventions are important for reaching those who are at greatest worry risk, including lower income, race/ethnic minority and gender minority teens. Implications and Conclusions Three out of every four adolescents in the United States worry about being a victim of school gun violence. Structural interventions to both reduce SGV itself and to reach adolescents at greatest risk for SGV worry are warranted.

Background Urinary (UI) and fecal (FI) incontinence are prevalent secondary chronic conditions among young adults with spina bifida (YASB). UI and FI decrease daily functioning for YASB, but no research has prospectively examined characteristics of UI and FI among YASB. We used ecological momentary assessment (EMA) over 30 days to describe the prevalence, episode-specific characteristics and negativity associated with UI and FI among a cohort of YASB. Method Data were collected as part of a larger 30-day EMA study prospectively examining the daily prevalence and context of UI and FI in adults with SB. We drew an analytic sample of young adults (YASB) participants aged 18-27 years (N=23 [26.1% of all study-participants [N=88];). Participants completed an end- of-day EMA tracking the frequency, dry intervals, volume, activity avoidance, management, positive and negative mood, current UI (UIA) or FI (FIA) anxiety, past UIA and FIA and past number of UI or FI events. Results YASB contributed a 643 daily EMAs. Nearly 60% (370/643) of all daily entries was associated with a general report of incontinence (UI: 54.1% [348/643]; FI: 20.8% [134/643]). Prevalence, characteristics and negativity associated with UI and FI varied significantly from day-to-day. Higher UI frequency, shorter dry intervals, greater UI volume, needing management help, avoiding activities because of UI, higher past median UIA, higher negative mood and fewer past UI events were associated with higher daily UIA. Shorter FI dry intervals, higher past median FIA, higher negative mood and fewer past FI events were associated with higher daily FIA. Discussion Day-to-day experiences of UI and FI vary among adults with SB across multiple dimensions. Negativity about incontinence when it occurs varies not only based on individual- and episode-specific characteristics, but also on incontinence in the preceding days. Operationalizing these insights into potential clinical interventions warrants further investigation. Discussion and Implications Young people with SB (YASB) experience day-to-day differences in the characteristics of urinary (UI) and fecal (FI) incontinence (e.g. frequency, self-management) events and the way they felt (e.g. affect) about UI and FI. The unique relationship of these factors to UI and FI anxiety suggest novel potential points of intervention.