Spina Bifida in Daily Life: an Exploratory Study

NCT ID: NCT03148301

Last Updated: 2024-07-03

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

250 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-06-01

Study Completion Date

2021-06-30

Brief Summary

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Spina Bifida can lead to physical neurocognitive and psychological symptoms. Still little is know about the daily impact of spina bifida on participation possibilities in social life. This exploratory research project want to investigate which lif choices patients with spina bifida has to make and in which way their daily life is organized. In a second part, quality of life will be measured and we hope to discover some dynamics in order to improve patient care.

Detailed Description

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This exploratory research project wants to investigate how patients with spina bifida live their daily life and which impact spina bifida has on their choices of life. This will be done by a survey that will ask questions about different domains in life: demographic variables, education, work, social functioning, spare time, housing, mobility, independency and quality of life. The survey is based on empirical findings in literature. The quality of life questioning is based on the SF36. The survey will be done once during a clinical consultation.

Conditions

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Spina Bifida

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with Spina Bifida

Adults with and parents of children with Spina Bifida followed by the team in UZ Leuven will be asked to complete a survey

Survey

Intervention Type OTHER

Survey

Interventions

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Survey

Survey

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Patients diagnosed with Spina Bifida

Exclusion Criteria

* Not able to read or write Dutch
Minimum Eligible Age

0 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Universitaire Ziekenhuizen KU Leuven

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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UZ Leuven

Leuven, , Belgium

Site Status

Countries

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Belgium

Other Identifiers

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S60433

Identifier Type: -

Identifier Source: org_study_id

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