Masteronderzoek Spina Bifida

Validation of the Quality of Life Assessment in Spina Bifida for Children and Adolescents in Dutch

Achtergrond
Patients with spina bifida often experience a decreased quality of life compared to patients without spina bifida. The Quality of Life Assessment for Spina Bifida (QUALAS) is a validated questionnaire to assess the quality of life in children (QUALAS-C), teenagers (QUALAS-T) and adults (QUALAS-A) with spina bifida, accounting for specific factors, such as bladder and bowel dysfunction. This questionnaire enables us to assess the current spina bifida related quality of life and identify if bladder and bowel dysfunction is of influence.

The objective of this study is to validate this QUALAS questionnaire in Dutch. A multicenter prospective validation cohort study will be performed. The study population consists of parents of children and children and adults with spina bifida that are patients at the Urology department of the two hospitals will be approached to participate. This questionnaire quantifies the quality of life in patients with spina bifida, with a special interest in bladder and bowel dysfunction.

A group of children and adults without spina bifida will function as a control group. These children and adults will be approached at the ENT and paediatric clinics. The main study parameter is the validation of the Dutch version of the questionnaire. Patients with spina bifida are asked to fill out the QUALAS at two time-points. They are also asked to fill out an extra questionnaire at two time-points, in order to validate the QUALAS. Children and adults in the control groups are asked to fill out the two questionnaires only once.

Doel van het onderzoek
The main objective is to validate the QUALAS-C, QUALAS-T and QUALAS-A in children, teenagers and adults with spina bifida.

Soort onderzoek en werkzaamheden vd student
Vragenlijstonderzoek/validatieonderzoek

• Data verzamelen
• Analyses
• Manuscript schrijven (en publiceren)
• Indien tijd over: meelopen met klinische werkzaamheden, zoals poli en OK

Startmoment
Zomer of najaar 2024

Interesse?
Neem dan snel contact op met de begeleider van dit masteronderzoek, dr. Lisette ’t Hoen, l.thoen@erasmusmc.nl

Referentie
Szymanski KM, Misseri R, Whittam B, Yang DY, Raposo SM, King SJ, Kaefer M, Rink RC, Cain MP. Quality of Life Assessment in Spina Bifida for Children (QUALAS-C): Development and Validation of a Novel Health-related Quality of Life Instrument. Urology. 2016 Jan;87:178-84.
doi: 10.1016/j.urology.2015.09.027.