An exploration of parents’ perceptions of lower urinary tract dysfunction treatments and quality of life of children with symptomatic joint hypermobility and hypermobile Ehlers-Danlos syndrome

Marianna Veriki, University College London.

Joint hypermobility (JH) is the capability of a joint to move beyond normal limits. JH can be present as an isolated feature or it can exist with a number of symptoms and complications, often referred to as symptomatic joint hypermobility (SJH). An increasing number of studies provide robust evidence about the presence of bladder dysfunction as part of the clinical complications of SJH (de Kort et al., 2003; Engelbert et al., 2017).

Bladder dysfunction can have an impact in the life of children with SJH (Pacey et al., 2015) and managing these symptoms is often a challenge for parents and carers. However, no studies that explore how parents perceive the Quality of Life (QoL) of children with bladder problems and what strategies they use to manage these symptoms have been conducted. To address these gaps an online parental survey was created that explored the perceptions of parents in relation to the clinical presentation of SJH and bladder dysfunction. The survey also explored how parents perceive their children’s quality of life and the treatments they sought for their child’s bladder dysfunction.

Out of 130 parents who accessed the survey 67 were fully completed and their responses analysed. The majority of children, as reported by their parents, were white females diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS). Bladder symptoms were present in all children represented by their parents. Urgency, bed wetting and constipation were the most frequently reported symptoms while pain during voiding was the least reported symptom. The majority of parents reported that their children are emotionally distressed by their bladder problems which affects their QoL. Additionally, sometimes children have difficulty participating in numerous daily activities.

Pharmacotherapy (medication) was rated as the most effective treatment by parents while the majority of conservative treatments, including physiotherapy, were not tried by families. Although, medication seemed to help their child’s bladder dysfunction some parents expressed their wish to withdraw from pharmacotherapy options due to the numerous side effects. When parents were asked which treatment they would choose if their children’s problems persist, most of them reported that they would choose medication, but equally, some parents were unsure of which treatment they would choose in the future.

Most of the parents reported that the treatment they sought did not meet their expectations, and a great number of them reported that no treatment or advice was effective in the management of their child’s bladder dysfunction. These responses were often related to their disappointment
in their health care provider and the lack of education in relation to the link between SJH and bladder dysfunction.

There is a need to reconsider current approaches to the management of bladder dysfunction in children. More research on the available treatments of bladder problems is necessary in order to establish standardised protocols that will help parents and health care providers in their decision making. Clinicians should evaluate the quality of life of children with SJH, especially when they present with additional systemic features such as bladder dysfunction. Educating parents and health care providers can provide a greater understanding of joint hypermobility syndromes and the related complications.

Start date: 30/05/2019

Finish date: 22/06/2019

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Mariana Veriki

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