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Item Is the Diabetic Bladder a Neurogenic Bladder? Evidence from the Literature(Springer, 2014-12) Powell, C.R.; Urology, School of MedicineDiabetes can often cause LUTS. This has been called diabetic cystopathy by many authors, but no concise grouping of symptoms for this condition has been agreed upon. The etiology of diabetic cystopathy remains unknown, but evidence from the literature strongly suggests a neurologic etiology as the primary factor, with other factors such as polyuria, damage to muscle from oxidative stress, and urothelial factors possibly contributing. Once a standard definition for diabetic cystopathy can be agreed upon, prospective, longitudinal studies will play a key role in the generation of hypotheses for the causes of diabetic cystopathy. Animal models will help test these hypotheses and possibly provide strategies for prevention.Item Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida(MDPI, 2024-05-15) Dellenmark-Blom, Michaela; Andersson, Marie; Szymanski, Konrad M.; Andréasson, Charlotta Levén; Arnell, Magdalena Vu Minh; Sjöström, Sofia; Abrahamsson, Kate; Pediatrics, School of MedicineSpina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8–16) for QUALAS-C, 10 min (range 9–15) for QUALAS-T and 24 min (range 9–38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients’ evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies.Item Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases(Elsevier, 2017-05) Hsieh, Michael; Wood, Hadley M.; Dicianno, Brad E.; Dosa, Nienke P.; Gomez-Lobo, Veronica; Mattoo, Tej K.; Misseri, Rosalia; Norton, Jenna M.; Sawin, Kathleen J.; Scal, Peter; Wright, James E.; Star, Robert A.; Bavendam, Tamara; Urology, School of MedicineOver the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.