Development and testing of a health related quality of life instrument for non-ambulatory adults with severe disabilities

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON21614

Enrollment

Registered

2018-01-24

Start date

2018-02-01

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

health related quality of life of non-ambulatory adults with severe disabilities e.g. cerebral palsy

Interventions

None listed

Eligibility

Inclusion criteria

Inclusion criteria: Adult primary caregiver (parent or direct support person) of a person: • with severe disabilities e.g. cerebral palsy, syndromes, profound intellectual and multiple disabilities ( • age from 18 years up • non-ambulatory (GMFCS level IV or V ) for at least the last six months. The caregiver has to have sufficient understanding of the written Dutch language.

Exclusion criteria

Exclusion criteria: Exclusion criteria includes the presence of a progressive neurological disorder or severe concurrent illness or disease in the non-ambulatory adult, not typically associated with the underlying disability

Design outcomes

Primary

Measure	Time frame
Scores of the health-related quality of life instrument that is tested for its psychometric evaluation	—

Contacts

Public ContactT. Zalmstra

t.a.l.zalmstra@rug.nl

Outcome results