Development and Needs Assessment and Efficiency of Smart Communication System for Patients With ALS (Part 2)

Department of Physical Medicine & Rehabilitation, Taipei Veterans General Hospital

Status

UNKNOWN

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT03806634

Enrollment

Registered

2019-01-16

Start date

2019-03-01

Completion date

2020-09-01

Last updated

2019-01-16

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

Conditions

Amyotrophic Lateral Sclerosis

Keywords

Amyotrophic lateral sclerosis, ALS, communication, needs

Brief summary

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.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

RETROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

20 Years to No maximum

Healthy volunteers

Inclusion criteria

* Escorial revised criteria (Brooks et al., 2000),The diagnosis of ALS requires: (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. * If they were Taiwanese and used traditional Chinese(Mandarin). * If they were older than age 20 years.

Exclusion criteria

* If they had been diagnosed with frontotemporal dementia, severe depression, or schizophrenia. * If they cannot see the communication board after correction. * If they cannot complete the questionnaire with researchers or family members help.

Design outcomes

Primary

Measure	Time frame	Description
System Usability Scale	2019.04.01~2019.06.30	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.

Secondary

Measure	Time frame	Description
Amyotrophic Lateral Sclerosis Specific Quality of Life Instrument-Revised, ALSSQOL-R	2019.04.01~2019.06.30	ALSSQOL-R is a 50 item instrument that measures overall quality of life (QOL) and six specific domains for individuals with ALS.
Taiwanese Depression Questionnaire, TDQ	2019.04.01~2019.06.30	The TDQ is a culturally relevant questionnaire, which is adaptable for screening depressive people in the local communities.
Caregiver Burden Scale	2019.04.01~2019.06.30	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.

Countries

Taiwan

Contacts

Primary ContactSi Huei Li

lableesihuei@gmail.com886-2871-2121

Backup ContactCheng Liang Chou

cl_chou@vghtpe.gov.tw886-2871-2121

Outcome results