ESPU-Nurses Meeting on Thursday 20, April 2023, 15:10 - 15:30
15:10 - 15:20
SN4-1 (OP)
Marie ANDERSSON 1, Michaela DELLENMARK-BLOM 1, Magdalena VUMINH ARNELL 1, Konrad SZYMANSKI 2, Sofia SJÖSTRÖM 1 and Kate ABRAHAMSSON 1
1) Queen Silvia Children's Hospital, Paediatric Urology, Goteborg, SWEDEN - 2) Riley Hospital for Children at IU Health, Indianapolis, Indiana, Division of Pediatric Urology, Indianapolis, USA
PURPOSE
Spina bifida is associated with neurologic bladder and bowel dysfunction, walking/mobility problems and cognitive dysfunction, which can impact quality of life (QoL) in the affected individuals. Condition-specific QoL instruments can assess aspects of importance to a specific patient group and provide clinically relevant information. Such instruments are essential to enable establishment of patient-centered healthcare evaluations and interventions. Our study aim was to describe the process of linguistic, face and content validity of the Swedish version of the QUALAS (QUAlity of Life Assessment in Spina bifida) instrument for children(C), teenagers(T) and adults(A).
MATERIAL AND METHODS
The establishment of linguistic, face and content validity of the original US American version of QUALAS C/T/A was completed in compliance with international standards on patient-reported outcome measurements, and a protocol described by the instrument developer. The procedure included forward-backward translation, expert reviews and pilot testing through 15 interviews with 5 children aged 8-12, 5 teenagers aged 13-17 and 5 adults aged >18 with spina bifida to assess face and content validity of QUALAS C/T/A.
RESULTS
The Swedish language versions of QUALAS C/T/A were achieved without major difficulties. In the Child(C), Teenageer(T) and Adult(A) version 5, 5 and 3 items needed discussion after forward translation and there were 8, 5 and 4 changes after backward translation. Following patient testing 2 revisions of QUALAS C, 1 of T and none of A were made to improve item clarity in Swedish language.
CONCLUSIONS
Conceptually equivalent Swedish language versions of QUALAS C/T/A with the original English versions were developed. This condition-specific approach enables improved QoL research evaluations in children, teens and adults with spina bifida in Sweden and internationally.
15:20 - 15:30
SN4-2 (OP)
Abhinay JOGULA, Rajendra NERLI, Nishant SETYA, Ashwin BOKARE and Ramana SRIPATHI
JN Medical College, KLE Academy of Higher Education and Research, Pediatric Urology, Belagavi, INDIA
PURPOSE
Tethered spinal cord syndrome (TCS) is a neurologic disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. This syndrome is closely associated with spina bifida. We retrospectively reviewed our experience in the urological clinical evaluation of children < 18 years of age presenting with TCS with or without voiding symptoms.
MATERIAL AND METHODS
We retrospective reviewed our hospital inpatient and outpatient records of all children with tethered cord syndrome , <18 years of age who were referred for urological evaluation. The presenting symptoms , physical examination findings and reports of various imaging procedures were noted
RESULTS
A total of 17 children (14 males , 3 females) with a mean age of 11 years were referred for evaluation of voiding function. Clinical examination revealed hypertrichosis in 3 children, dermal sinus tract in 4 and midline subcutaneous lipoma in 8. Neurological examination revealed lower motor neuron signs in 9 and mixed upper and lower motor neuron signs in 8 children . Urodynamic (UDS) evaluation revealed detrusor areflexia in 9 patients (sensory motor paralysis in 3 and motor paralysis only in 6), detrusor hyperreflexia in 3, a mixed lesion in 4 and a stable bladder in 1 . Post-operative urodynamics was normal in 12 children .
CONCLUSIONS
Children with TCS have abnormal urodynamic patterns and early detethering can lead to improvement in the UDS parameters in most children