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Parental perceptions of bladder dysfunction in children with symptomatic joint hypermobility
Marianna Veriki1,2, Annette Coomer1,3, Jane V Simmonds1,4
1UCL Great Ormond Street Institute of Child Health, University College London, London, UK.
Insights
Symptomatic joint hypermobility in children often includes lower urinary tract dysfunction (LUTD), significantly impacting quality of life. Current treatments are often ineffective, highlighting a need for better management strategies.
Area of Science:
- Pediatric Urology
- Rheumatology
- Quality of Life Research
Background:
- Symptomatic joint hypermobility (SJH) presents with chronic pain, fatigue, and joint instability.
- Symptoms in SJH can extend to lower urinary tract dysfunction (LUTD), affecting children's well-being.
- Limited research exists on parent-perceived quality of life (QoL) and management strategies for LUTD in children with SJH.
Purpose of the Study:
- To explore parent-perceived QoL in children with LUTD associated with SJH.
- To identify symptom management strategies and their efficacy in this population.
- To understand the emotional impact of LUTD on children from a parental perspective.
Main Methods:
- An online cross-sectional survey was conducted with parents of children aged 6-18 years.
- Participants were recruited through two UK charitable organizations.
- Validated questionnaires included the Pediatric Incontinence Questionnaire (PinQ) and the Dysfunctional Voiding Symptom Score.
Main Results:
- Urgency (97%) and enuresis (41.7%) were the most common LUTD symptoms.
- The Pediatric Incontinence Questionnaire indicated significant emotional distress in children due to LUTD.
- Pharmacotherapy was perceived as most effective by 43% of parents; physiotherapy was accessed by only 16%.
Conclusions:
- Parents perceive LUTD as significantly impacting their child's QoL.
- Current treatments for LUTD in children with SJH often do not meet parental expectations.
- There is an urgent need for increased clinician education and development of effective, evaluated treatments.
Abstract:
Children with symptomatic joint hypermobility (SJH) report chronic pain, fatigue, and joint instability as their main symptoms. Symptoms can extend beyond musculoskeletal and include lower urinary tract dysfunction (LUTD). There are no studies exploring parent-perceived quality of life (QoL) in children with LUTD, or strategies used to manage symptoms in this population. Our online cross-sectional survey assessed parents of 6-18-year-olds via two UK charitable organizations. It included the Pediatric Incontinence Questionnaire (PinQ), the Dysfunctional Voiding Symptom Score, and questions exploring treatments and efficacy. Sixty-seven parental questionnaires were analyzed. The majority of children were white females (95%, n = 64). Urgency (97%, n = 65) and enuresis (41.7%, n = 28) were the most frequently reported symptoms. The PinQ questionnaire showed that children were emotionally distressed by LUTD. Twenty-nine parents (43%, n = 29) reported pharmacotherapy as the most effective treatment. Few had accessed other treatments such as physiotherapy (16%, n = 18). Most parents reported that overall treatment did not meet their expectations. This study highlights that parents perceive LUTD as having a great impact on their child's QoL. There is need for education among clinicians about LUTD and hypermobility-related disorders, and for development and evaluation of treatments.
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