| 1. |
- Jenholt Nolbris, Margaretha, 1956, et al.
(författare)
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Development of a programme for web-based support for children – a participatory design in children and families with urinary tract disorders.
- 2016
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Ingår i: JSM Health Education and Primary Health Care. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- Children with urinary tract and bowel malformation often realize that they do not have the same body and genital appearance as their schoolmates. This sensitive matter affects their integrity, a private problem that not is discussed in public. It is a lack of prevention program, particularly developed in cooperation with the children. The goal with the present project was to get tools for support in daily live. The aim of the study was together with the children, family, hospital staff and researcher; develop a web-based support program to be used in home setting. The study was conducted between 2011and2015. A participatory design was employed following the approach in person centred care with a partnership between 22 children 3-7 years old, their families and the research group of 8 persons. The program was built on stories about two children, their actions in different situations and with images to support the stories. Open conversations were used for the data collection and data were analysed using qualitative content analysis. Steps of 8 themes were formed from the developing of the web-based program, which offered a user-friendly support in daily life for the children with long-term illnesses and family.
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| 2. |
- Simeonsdotter Svensson, Agneta, 1950, et al.
(författare)
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Health, Wellbeing and Self-Esteem: Web-Based Support in Children with Urogenital or Bowel Malformation
- 2016
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Ingår i: Open Journal of Pediatrics. - : Scientific Research Publishing, Inc.. - 2160-8741 .- 2160-8776. ; 6:1, s. 82-90
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Tidskriftsartikel (refereegranskat)abstract
- 1. Introduction Long-term illness is usually a challenge for both children and their families [1]. Children with urogenital malformation or bowel disturbances are a vulnerable group who are at greater risk of experiencing ill health. They are often supported in situations related to their malformation by parents and others. When at school, the child suddenly has to face and cope with situations they are not used to; they often feel excluded, afraid of relationships with the opposite sex and subjected to bullying [2]-[4]. They express a great need for support in daily life [5]-[8]. The social and emotional consequences of long-term illness need to be addressed [9]. However, there is lack of studies investigating prevention of ill health in this group of children. Health promotion is the process of enabling people to increase their control over, and to improve their health. To reach a state of complete physical, mental and social wellbeing, the child must be able to identify and to realize aspirations, to satisfy needs, and to change or cope with the environment. Health is, therefore, seen as a resource, not the objective, in everyday life. Health is a positive concept that emphasizes social and personal resources, as well as physical capacities. Health promotion is not just the responsibility of the health sector; it goes beyond healthy lifestyles to wellbeing [10]. However, the needs of children with the same disease are not necessarily the same. Person-centred care (PCC) is explained as focusing on the person and not on the illness. The purpose is to make care and treatment more personal and to understand behaviour and symptoms from the perspective of the individual patient. To do this, it is important to proceed from knowledge of the sick person’s living patterns and priorities [11]. Studies have been conducted with positive outcomes, mainly for adults with long-term illness but also for young people [12]-[15]. The present study is part of a larger project studying health and wellbeing using person-centred, web-based learning in children with severe urogenital, urological and bowel malformations [16] [17]. Findings from the studies in this project are qualitative in design and show the development of the intervention. The use of SKYPE for interviewing children was also evaluated. This method can be used in the child’s home and is convenient for both the child and the family. The ability to use the body language also facilitated the understanding of the conversation, particularly in the youngest children. The intervention could identify wellbeing, resources, needs, and wishes. The children were interested and able to discuss relations, emotions and their own body. That learning had taken place was shown by realizing something new, reflecting on it, and then using the knowledge in a new context in their daily lives. The aim of the study was to investigate the effect on health/wellbeing and self-esteem, before and after oneyear intervention in children aged 3 - 7 years born with malformations in the urethra, bladder, genitals and/or bowel. The results of the intervention, person-centred, web-based learning support, are compared with the findings in a control group of healthy children.
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| 3. |
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| 4. |
- Andersson, Marie, 1977, et al.
(författare)
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Normalized Urinary Flow at Puberty after Tubularized Incised Plate Urethroplasty of Hypospadias in Childhood.
- 2015
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Ingår i: The Journal of urology. - : Ovid Technologies (Wolters Kluwer Health). - 1527-3792 .- 0022-5347. ; 194:5, s. 1407-1413
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Tidskriftsartikel (refereegranskat)abstract
- An obstructive urinary flow pattern is frequently seen after tubularized incised plate urethroplasty for hypospadias. However, the significance of this finding has not been determined and long-term results are few. We describe postoperative long-term uroflowmetry results after puberty in males who underwent tubularized incised plate urethroplasty in childhood.
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| 5. |
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| 6. |
- Andersson, Marie, 1977, et al.
(författare)
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Urological results and patient satisfaction in adolescents after surgery for proximal hypospadias in childhood
- 2020
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Ingår i: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131 .- 1873-4898. ; 16:5
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Tidskriftsartikel (refereegranskat)abstract
- Background: Proximal hypospadias repair is associated with a considerable complication risk. Long-term follow-up is required to present realistic expectations in pre-operative counseling. Objective: To investigate adolescents after childhood surgery for proximal hypospadias in a prospective cohort study describing the urological outcome, complication rates and patient satisfaction with penile appearance. Study design: 39 adolescents ≥14 years with penoscrotal to perineal hypospadias and primary urethroplasty (tubularized incised plate (TIP), preputial flap as Onlay or tubularized (Duckett)) from 1996 to 2005 at a single center were evaluated. The clinical assessment, at Md 16.5 years (14–25), included voiding history, genital examination including the Hypospadias Objective Scoring Evaluation (HOSE), uroflowmetry plus chart data from previous urinary flows and evaluation of patient satisfaction using the Penile Perception Score (PPS). Results: Twenty-nine patients with penoscrotal and 10 with scrotal/perineal hypospadias underwent surgery with TIP (N = 14), Onlay (N = 14) and Duckett (N = 11). Uroflows improved significantly compared with prepubertal maximal flows. Impaired flow rate (<10 mL/s) was found in 14% (5/36). Fifty-one percent (20/39) required reoperations, 29% (4/14) of TIP, 50% (7/14) of Onlay and 82% (9/11) of Duckett (p = 0.0062). Median penile length in adolescence was 8.7 cm (4.0–11.0). Forty-four percent (12/27) of patients were dissatisfied with penile length. Patients were ‘satisfied’ or ‘very satisfied’ with meatal position and shape despite HOSE for meatal position being 11% (4/38) distal, 76% (29/38) proximal glanular and 13% (5/38) coronal. TIP patients had more curvature at puberty than Duckett (p = 0.0062). Patients that had a decurvature procedure had shorter penile length (p = 0.019). Discussion: A high complication rate is previously described, predominantly within the first years. Our study shows 50% of reoperations were performed after >3 years, illustrating the need for long-term follow-up. Patient satisfaction with a deviant meatal position is rarely reported [1,2]. Our results support a conservative approach to an asymptomatic retracted meatus. Limitations of this descriptive study are the non-comparable groups and the retrospective data for correlation, impeding evaluation of prognostic outcome-factors. The shorter penile length found in patients after plication, and increased curvature after TIP, is therefore merely descriptive. However, the findings are in line with earlier publications suggesting limited use of TIP, and plication (recommending ventral lengthening instead) to avoid penile shortening and curvature in these cases [3–5]. Conclusions: The urological long-term outcome after proximal hypospadias repair is good, although late reoperations are common. In adolescence, patients were dissatisfied with the short penile length but satisfied with meatal position, indicating that in proximal hypospadias, preserving penile length and correcting curvature are prioritized over a distal meatus. [Table presented] © 2020 The Author(s)
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| 7. |
- Borg, Helena, et al.
(författare)
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Four-hour voiding observations detect neurogenic lower urinary tract dysfunction in neonates with anorectal malformation
- 2021
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Ingår i: Journal of Pediatric Urology. - : Elsevier BV. - 1477-5131. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Neurogenic lower urinary tract dysfunction (LUTD) has been reported in 20–50% of children with anorectal malformations (ARM). As neurogenic LUTD represents an inherent risk of renal deterioration and urinary tract infections, an early diagnosis is important. The gold standard for evaluating neurogenic LUTD involves invasive urodynamic testing but a useful addition should be an easy-to-perform, non-invasive method of screening. Objective: In this study, we evaluate non-invasive 4 h voiding observations as a screening method for neurogenic LUTD in ARM children. Study design: Thirty-four patients with ARM, excluding those with perineal fistulas, were evaluated using both 4 h voiding observation and urodynamic testing before and after posterior sagittal anorectoplasty (PSARP) at median ages of 0.3 and 1.1 years. In the urodynamic assessment, the gold standard for neurogenic LUTD, nine children received the diagnosis, eight innate and one post-surgery. Results: Five boys with a high urethral fistula and anomalies of the spinal cord had urodynamically diagnosed neurogenic LUTD, a dysfunction also identified in the 4 h voiding observations. The pattern was characterised both by an increase in the number of voiding and the number of interrupted voiding, urinary leakage and elevated residual urine (Figure). In three girls with a vestibular fistula and tethered cord, an urodynamic investigation identified suspected mild neurogenic LUTD. In the voiding observations, an abnormal voiding pattern was not as obvious in the girls as in the five males. One girl with cloaca showed signs of postsurgical denervation damage, which was easily identified in the 4 h voiding observations (high capacity and elevated residual urine). Discussion: In the present study, gender differences in the severity of dysfunction reflected in the free voiding pattern in infants with ARM and neurogenic LUTD is probably the result of the different underlying causes of neurogenic LUTD in boys and girls. Boys with the condition have a congenital malformation of the caudal part of the spinal cord and girls a tethering of the cord. The most obvious limitation of the study was the low number of patients. Despite this, we consider the results worth reporting, since we found that results in the free voiding observations effectively confirmed what was established in the urodynamic investigations. Conclusion: In pre-PSARP patients, 4 h voiding observations can be used to screen for severe neurogenic LUTD requiring attention and treatment. When post-surgical denervation is suspected, the voiding observation is also a good method for indicating the diagnosis.[Formula presented] © 2020 Journal of Pediatric Urology Company
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| 8. |
- Borg, Helena, et al.
(författare)
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Impact of spinal cord malformation on bladder function in children with anorectal malformations.
- 2009
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Ingår i: Journal of pediatric surgery. - : Elsevier BV. - 1531-5037 .- 0022-3468. ; 44:9, s. 1778-85
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: Risk factors for the presence of neurogenic bladder dysfunction (NBD) in children born with high anorectal malformations (ARMs), were investigated, to identify the need for urodynamics in these patients. MATERIAL AND METHODS: The study included 37 patients with high ARMs (21 boys and 16 girls). Bladder function was evaluated with urodynamics both before and after anorectoplasty (posterior sagittal anorectoplasty [PSARP]). All patients were investigated with spinal radiograph. Spinal ultrasound was performed in the neonatal period, and magnetic resonance imaging was added in case of abnormal ultrasound or urodynamics and in case of cloacal malformation. RESULTS: In ARM patients with rectourethral and vestibular fistulas and cloacas, NBD was identified in 9 children (25%). The bladder dysfunction was innate in all cases except in one girl with cloaca, indicating that the risk of iatrogenic denervation seems minimal using the PSARP technique. All children with innate NBD had a spinal cord malformation either as spinal cord regression or tethering with or without a lipoma. Concerning vertebral status, almost all children with NBD had partial sacral agenesis. Abnormal perineal appearance was highly correlated to NBD in boys, especially in those with a spinal cord regression malformation. Innate NBD was not found in any child with normal spinal cord. CONCLUSION: From these results, we suggest that spinal ultrasound and perineal inspection are used as screening procedures for NBD in children with ARM. Urodynamic investigation is recommended only when spinal cord anomalies or other signs indicative of NBD are present. In case of spinal cord malformation, repeated urodynamics during follow-up is mandatory because of the risk for developing tethered cord syndrome.
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| 9. |
- Borg, Helena, et al.
(författare)
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Longitudinal study of bowel function in children with anorectal malformations.
- 2013
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Ingår i: Journal of pediatric surgery. - : Elsevier BV. - 1531-5037 .- 0022-3468. ; 48:3, s. 597-606
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Tidskriftsartikel (refereegranskat)abstract
- Longitudinal follow-up of changes in bowel function in children with anorectal malformations (ARMs) with or without spinal cord pathology and neurogenic bladder dysfunction (NBD) as they grow. Another purpose was to identify predictors influencing bowel functional outcome.
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| 10. |
- Brandström, Per, 1959, et al.
(författare)
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The Swedish Reflux Trial in Children: I. Study Design and Study Population Characteristics
- 2010
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Ingår i: Journal of Urology. - : Ovid Technologies (Wolters Kluwer Health). - 0022-5347 .- 1527-3792. ; 184:1, s. 274-279
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Konferensbidrag (refereegranskat)abstract
- Purpose: We compared the rates of febrile urinary tract infection, kidney damage and reflux resolution in children with vesicoureteral reflux treated in 3 ways, including antibiotic prophylaxis, endoscopic therapy and surveillance with antibiotics only for symptomatic urinary tract infection. Materials and Methods: Children 1 to younger than 2 years with grade reflux were recruited into this prospective, open, randomized, controlled, multi-center study and followed for 2 years after randomization. The main study end points were recurrent febrile urinary tract infection, renal status on dimercaptosuccinic acid scintigraphy and reflux status. Outcomes were analyzed by the intent to treat principle. Results: During a 6-year period 128 girls and 75 boys entered the study. In 96% of cases reflux was detected after urinary tract infection. The randomization procedure was successful and resulted in 3 groups matched for relevant factors. Recruitment was slower than anticipated but after patients were entered adherence to the protocol was good. Of the children 93% were followed for the intended 2 years without a treatment arm change. All except 2 patients completed 2-year followup scintigraphy. Conclusions: Recruitment was difficult but a substantial number of children were entered and randomly assigned to 3 groups with similar basic characteristics. Good adherence to the protocol made it possible to address the central study questions.
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