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UID:5823-1732608000-1732726800@canadianrdn.ca
SUMMARY:Fall 2024 Rare Disease Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/fall-2024-rare-disease-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
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UID:7051-1732730400-1732734000@canadianrdn.ca
SUMMARY:Outcomes and challenges in Spina Bifida: bridging adolescence and adulthood
DESCRIPTION:This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood\, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder\, a prevalent complication in SB\, often leads to incontinence\, hydronephrosis\, and urinary tract infections\, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the risk of renal failure\, yet continence remains a persistent issue. Drawing on literature on PROMs and urological outcomes\, we examine general health and bladder-specific outcomes\, including tools to examine these. Factors influencing QoL include clean intermittent catheterization\, transition readiness\, mental health\, and social support. Despite multimodal interventions\, incontinence continues to impact daily life. The session highlights the importance of PROMs and multidisciplinary approaches to optimize care and improve long-term outcomes for SB patients.
URL:https://canadianrdn.ca/event/outcomes-and-challenges-in-spina-bifida-bridging-adolescence-and-adulthood/
CATEGORIES:Healthcare,Industry,Patient Focused,Research Focused,Virtual,Webinars
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