Hereditary Spastic Paraparesis
Conditions
Keywords
OUTCOME MEASURE, HEREDITARY SPASTIC PARAPLEGIA
Brief summary
The Self-Notion and Perception (SNAP) questionnaire developed at IRCCS E.Medea by Eleonora Diella and Roberta Morganti, arises from the need to quantify the subjective perception of the patient suffering from HSP of the typical symptoms of pathology, such as spasticity, weakness, changes in balance, resistance in walking, pain and fatigue. The purpose of this study is to validate this instrument and test its reliability, looking for correlations with the measurement scales used in the literature for the evaluation of the patient with HSP. The most used for this population are the Spastic Paraplegia Rating Scale (SPRS) and the Six-Minute Walk Test (6MWT) which assess the severity of the disease and the level of endurance (8-9) respectively.
Interventions
The SNAP questionnaire will be administered 2 times in 2 consecutive days to evaluate its reliability. The questionnaire will be self-filled by the patient. Then the SPRS scale and, where possible, the 6MWT will be administered.
Sponsors
Study design
Eligibility
Inclusion criteria
* diagnosis of genetically determined hereditary spastic paraparesis or subjects without defined genetics but who unequivocally show at the time of evaluation a dominant or recessive familiarity with exclusive involvement of the pyramidal system * age\> 9 years * IQ\> 80 * The patient must be able to walk for at least 10 meters. Indoors, even with help
Exclusion criteria
* Age less than 9 years * IQ \<80, * loss of gait * psychopathological aspects that can affect the validity of the data collected
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Test the validity, investigating the correlation with Spastic Paraplegia Rating Scale and with Six-Minute Walk Test, and the reliability (through test-retest mode) of the SNAP questionnaire in the aforementioned population. | 2 days | the Spastic Paraplegia Rating Scale (SPRS) and the Six-Minute Walk Test (6MWT) which assess the severity of the disease and the level of endurance respectively. |
Countries
Italy