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The research is aimed to asses the validity of the communication system improving the quality of life and the degree of sanctification of clinical patients and their caregiver.
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| Measure | Description | Time Frame |
|---|---|---|
| System Usability Scale | It consists of a 10 item questionnaire with five response options for respondents; from Strongly agree to Strongly disagree. And also we can know the sanctification of the patient with ALS and their caregiver. | 2019.04.01~2019.06.30 |
| Measure | Description | Time Frame |
|---|---|---|
| Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument-Revised, ALSSQOL-R | ALSSQOL-R is a 50 item instrument that measures overall quality of life (QOL) and six specific domains for individuals with ALS. | 2019.04.01~2019.06.30 |
| Taiwanese Depression Questionnaire, TDQ |
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Inclusion Criteria:
(A) the presence of:
(A:1) evidence of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination (A:2) evidence of upper motor neuron (UMN) degeneration by clinical examination, and
(A:3) progressive spread of symptoms or signs within a region or to other regions, as determined by history or examination, together with: (B) the absence of (B:1) electrophysiological or pathological evidence of other disease processes that might explain the signs of LMN and/or UMN degeneration, and (B:2) neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
Exclusion Criteria:
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Participants with ALS were recruited from ALS clinics(Taipei Veterans General Hospital, Taiwan, R.O.C),20 participants. Participants were eligible for this study if they were diagnosed with definite, probable, probable laboratory-supported, or possible ALS according to the criteria (Brooks et al., 2000).
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Si Huei Li | Contact | 886-2871-2121 | 2931 | lableesihuei@gmail.com |
| Cheng Liang Chou | Contact | 886-2871-2121 | 7361 | cl_chou@vghtpe.gov.tw |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Taipei Veterans General Hospital | Taipei | TW | 11217 | Taiwan |
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| ID | Term |
|---|---|
| D000690 | Amyotrophic Lateral Sclerosis |
| D003142 | Communication |
| ID | Term |
|---|---|
| D013118 | Spinal Cord Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D016472 | Motor Neuron Disease |
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The TDQ is a culturally relevant questionnaire, which is adaptable for screening depressive people in the local communities. |
| 2019.04.01~2019.06.30 |
| Caregiver Burden Scale | The burden experienced by family caregivers is the most important caregiver-related variable in care at home of a chronically-ill person. The extent of subjective burden has significant impact on the emotional and physical health of the family caregiver, and even influences the mortality of spouse caregivers. It affects the way the family caregiver deals with the care-receiver and determines the time of institutionalization. | 2019.04.01~2019.06.30 |
| D019636 | Neurodegenerative Diseases |
| D057177 | TDP-43 Proteinopathies |
| D009468 | Neuromuscular Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D001519 | Behavior |