A cross sectional single institution study of quality of life in adult patients with spina bifida

Coco, Caitlin T.; Meenakshi‐Sundaram, Bhalaajee; Eldefrawy, Ahmed; Henry, Millard; Watts, Tanya; Aston, Christopher E.; Lewis, Jennifer; Frimberger, Dominic; Slobodov, Gennady

doi:10.1002/nau.23511

Cited by 6 publications

(1 citation statement)

References 19 publications

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“…However, all patients have been shown to experience a significant deterioration in the quality of life (QoL). 1 Urological interventions are aimed at preventing upper urinary tract damage, facilitating independency in daily life and improvement of QoL. This requires the approach of a multidisciplinary team.…”

Section: Introductionmentioning

confidence: 99%

Are EAU/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers

Doğan

Stein

Hoen

et al. 2019

Neurourology and Urodynamics

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Aims The Paediatric Urology Guidelines Panel reports initial experience with patient involvement in spina bifida patient groups to gather information on their awareness of the guidelines and reflection of guideline recommendations. Methods The survey was delivered to spina bifida patients/parents via the national society groups in Turkey, Germany, and The Netherlands. Questions included demographic features, medical status, awareness, and agreement on the recommendations given in the guidelines and future expectations. Results A total of 291 patients from 3 countries responded to the survey. Mean age was 13.9 ± 12.2 years, male/female ratio 138/151, 75% of all surveys were completed by the caregivers. The medication was taken by 78% of patients (64% anticholinergics). Complete dryness rates for urine and stool were 24% and 47%, respectively. The agreement rates on the recommendations regarding urodynamics, intermittent catheterization, anticholinergics drug use, bowel management, and life‐long follow‐up were 97%, 82%, 91%, 77%, and 98%, respectively. Only 8% of responders were aware of the European Association of Urology/European Society for Pediatric Urology guidelines. The priorities of patients for future expectations were as the following: quality of life (QoL), surgical techniques, development of new medications and sexuality/fertility issues. Male spina bifida patients preferred new medications and sex/fertility issues more, whereas females favored QoL issues improvement more. Conclusions Although the native language of the involved patients was different from English, awareness of guidelines was 8%. The general approval of the recommendations given in the guidelines is quite high. The national society groups showed a great interest to get involved in the creation of the guidelines to improve health care for spina bifida patients.

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Section: Introductionmentioning

confidence: 99%

Are EAU/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers

Doğan

Stein

Hoen

et al. 2019

Neurourology and Urodynamics

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Long-Term Quality of Life for Patients with Spina Bifida

Ball,

Clayton

2024

Curr Bladder Dysfunct Rep

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Purpose of Review This review explores the literature that currently exists regarding quality of life for patients with spina bifida and assesses screening tools available for practitioners to assess these outcomes. Domains addressed include health related quality of life, relationships, bowel and bladder dysfunction, sexuality, pain, and mood. Recent Findings Several recent papers have assessed available questionnaires and reviewed findings of key quality of life domains, with varying results. Summary Historically, the literature has focused on surgical outcomes for patients with spina bifida. Though some authors have begun to explore quality of life for this patient population, particularly in the short-term, a paucity of quality, long-term studies exist that describe quality of life domains or offer potential targets for improvements in outcomes.

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Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis

Ridosh

Sawin

Roux

et al. 2019

Journal of Pediatric Nursing

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A cross sectional single institution study of quality of life in adult patients with spina bifida

Cited by 6 publications

References 19 publications

Are EAU/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers

Are EAU/ESPU pediatric urology guideline recommendations on neurogenic bladder well received by the patients? Results of a survey on awareness in spina bifida patients and caregivers

Long-Term Quality of Life for Patients with Spina Bifida

Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis

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