Factors impacting transition readiness in young adults with neuropathic bladder

Roth, Joshua D.; Szymański, Konrad M.; Cain, Mark P.; Misseri, Rosalia

doi:10.1016/j.jpurol.2019.10.017

Cited by 15 publications

(23 citation statements)

References 20 publications

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“…In general, patients scored well on all self-management items which means that, for the majority of the patients, on the majority of the self-management items, answers were positive. SMS were only weakly related to non-modifiable factors, such as age and gender, which is in accordance with previous research ( 21 , 23 ). As SMS correlate poorly with these non-modifiable factors, we looked at possible ways to improve modifiable factors, like filling gaps in medical information or providing instructions about practical issues (e.g.…”

Section: Discussionsupporting

confidence: 93%

“…The gaps in SMS detected by transition checklists can subsequently be trained with the help of parents and caregivers, provided that both patient and parents are motivated to do so. Suris et al ( 32 ) and Roth et al ( 23 ) found that patients are not always motivated to learn how to be more independent. If patients are less motivated, a transition app can help to make the transition easier , and serious gaming ( 33 , 34 , 35 ) can be a way to make self-management fun .…”

Section: Discussionmentioning

confidence: 99%

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Transition readiness among adolescents with rare endocrine conditions

Alewijk

Davidse

Pellikaan

et al. 2021

Endocrine Connections

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Objective: Adolescents and young adults (AYA) with common endocrine disorders show a high dropout (up to 50%) after the transfer from paediatric to adult endocrinology. Little is known about transition readiness in rare endocrine conditions (rEC). This study aims to assess medical Self-Management Skills (SMS) among AYA with rEC in relation to age and gender, in order to understand dropout and increase transition readiness. Design: Cross-sectional study using web-based medical self-management questionnaires. Methods: Questionnaires consisting of 54 questions in seven domains were filled out by the adolescents before the first shared appointment with both paediatric and adult endocrinologist. Results: Fifty-seven patients (median age 17 y, 25/57 females) participated and generally scored well on most items. However, one out of seven did not know the name of their disorder, one sixth of the glucocorticoid users did not know that dose should be adapted in case of illness or surgery, over one fifth had never ordered their repeat prescriptions themselves and two thirds had never had a conversation alone with their doctor. Conclusions: Several SMS among patients with rEC are insufficient, with regard to medical knowledge, practical skills and communication. As SMS are only weakly related to non-modifiable factors like age and gender, we recommend focussing on other factors to increase transition readiness. The timing, amount and ‘mode’ of medical information should be individualised. Transition checklists should be used to detect shortcomings in practical skills and communication, which can subsequently be trained with the help of parents, caregivers and / or e-technology.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Transition readiness among adolescents with rare endocrine conditions

Alewijk

Davidse

Pellikaan

et al. 2021

Endocrine Connections

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“…Other studies have attempted to assess this, but they excluded a measure of the ability to navigate the health care system based on HL. 19 In our analyses, we identified that patient-reported HL remained significantly associated with TRAQ score even after adjustment for all covariates, including education factors. Although the magnitude of the association was attenuated, HL was still independently associated with TRAQ score in a stepwise manner.…”

Section: Discussionmentioning

confidence: 67%

Assessment of Health Literacy and Self-reported Readiness for Transition to Adult Care Among Adolescents and Young Adults With Spina Bifida

et al. 2021

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IMPORTANCE Health literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown. OBJECTIVE To determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida. DESIGN, SETTING, AND PARTICIPANTSThis cross-sectional study involved collection of patientreported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021. EXPOSURES Health literacy as assessed by the Brief Health Literacy Screening Tool. MAIN OUTCOMES AND MEASURES The primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores. RESULTS The TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79). CONCLUSIONS AND RELEVANCEPatient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors.(continued) Key Points Question Is health literacy associated with patient-reported care transition readiness among adolescents and young adults with spina bifida? Findings In this cross-sectional, singlecenter study, 200 indi...

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“…This is consistent with the findings of studies in other populations of young adults with TS as well as other medical complexities (Lin et al, 2019). A recent report found that young adults with spina bifida 18–25 scored lower on transition readiness questionnaires than those older than age 25, who demonstrated more independence (Roth et al, 2020). Interestingly, in a separate study, the authors discovered that adults with spina bifida ages 18–25 and a control group of college age students (18–26 years) did not have significantly different scores on the same transition readiness questionnaire, indicating that this delay to independence may be a more universal phenomenon (Roth et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…Interestingly, a study by Gould et al (2013) in an older population of 240 women with TS ages 25–67 found they were actually more likely to have a baccalaureate degree or higher and to be employed than the general female population. It has been demonstrated that the prefrontal cortex of the brain, which is responsible for decision‐making and behavior control, does not fully develop until the age of 24, which could impact the ability to acquire the skills needed for complete independence (Clark et al, 2004; Roth et al, 2020; Sowell et al, 2003).…”

Section: Discussionmentioning

confidence: 99%

The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents

Streur

Floody

Lapham

et al. 2021

American J of Med Genetics Pt A

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Transitioning to adult health care and functioning is crucial for youth and young adults with special health care needs, such as those with Turner syndrome (TS). The International Turner Syndrome Consensus Group developed clinical practice guidelines to improve this transition. This study sought to evaluate how effectively they have been implemented and whether they align with the priorities of women with TS and families of girls and women with TS. A web‐based survey was offered to those affiliated with major TS support organizations, with 1338 successfully responding (n = 543 women [≥18 years]; n = 232 parents of a woman [≥18 years]; and n = 563 parents of a girl with TS [<18 years]). Findings demonstrated that while most women transitioned to adult primary care providers, follow‐up with key specialists was lacking. Women and families prioritized flexibility in appointments and designating one provider to oversee all their TS‐related care. They identified health care coverage as a barrier to receiving care. The transition process to adult care and independence commonly occurred after girls become legal adults. Together, these findings serve to inform strategies to improve the delivery of transitional care for girls and women with TS.

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Factors impacting transition readiness in young adults with neuropathic bladder

Cited by 15 publications

References 20 publications

Transition readiness among adolescents with rare endocrine conditions

Transition readiness among adolescents with rare endocrine conditions

Assessment of Health Literacy and Self-reported Readiness for Transition to Adult Care Among Adolescents and Young Adults With Spina Bifida

The transition to independence and adult care for women with Turner syndrome: Current status and priorities of 1338 women and parents

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