Amyotrophic Lateral Sclerosis
Conditions
Brief summary
The research target 1. To investigate the home nursing knowledge needs of ALS patients; 2. Investigate the needs of ALS caregivers for home nursing knowledge; 3. To compare the differences between patients and caregivers in the knowledge needs of patients' refusal to care, so as to provide patients and caregivers with targeted care, meet the needs of patients, improve the quality of life of patients, and extend the survival period.
Detailed description
The research target 1. To investigate the home nursing knowledge needs of ALS patients; 2. Investigate the needs of ALS caregivers for home nursing knowledge; 3. To compare the differences between patients and caregivers in the knowledge needs of patients' refusal to care, so as to provide patients and caregivers with targeted care, meet the needs of patients, improve the quality of life of patients, and extend the survival period. Assessment indicators 1. Scale: Self-designed questionnaire Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Families; 2. Amyotrophic lateral sclerosis function rating scale (ALS FRS)
Interventions
OTHERThe questionnaire survey
Questionnaires were issued and collected by 6 competent nurses with strict training, data entry by 2 researchers, statistical analysis by 1 researcher, and quality control by the other 2 researchers throughout the process.
Sponsors
Peking University Third Hospital
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
Inclusion criteria
* confirmed and suspected patients of ALS diagnostic criteria revised by E1 Escorial in 1998;Conscious and stable vital signs;Signing the informed consent;
Exclusion criteria
* patients with severe medical diseases, such as severe cardiovascular and cerebrovascular diseases, liver and kidney failure, etc.The existing resources cannot complete the questionnaire to fill in the exclusion of patients, but the caregivers can fill in the questionnaire;
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Scale | 1 year after recruitment | Scale: Self-designed questionnaire Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Family Members; |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| (ALS FRS) | 1 year after recruitment | Amyotrophic Lateral Sclerosis Function Scale (ALS FRS) |
Countries
China
Outcome results
None listed