NCT04950231

Investigation on Home Care Needs of ALS Patients and Their Caregivers

Investigation on the Knowledge Needs of ALS Patients and Their Caregivers at Home

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 20 (actual)
• Sponsor: Peking University Third Hospital · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

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)

Conditions

• Amyotrophic Lateral Sclerosis

Interventions

Type	Name	Description
OTHER	The 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.

Timeline

• Start date: 2020-09-01
• Primary completion: 2021-02-01
• Completion: 2021-05-01
• First posted: 2021-07-06
• Last updated: 2021-07-06

Locations

1 site across 1 country: China