Investigation on Home Care Needs of ALS Patients and Their Caregivers

Completed

• Conditions: Amyotrophic Lateral Sclerosis

• Registration Number: NCT04950231
• Lead Sponsor: Peking University Third Hospital

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)

Study Timeline

• Study Start: 2020-09-01
• Primary Completion: 2021-02-01
• Study Completion: 2021-05-01
• Status Verified: 2021-06
• Study First Submitted: 2021-06-27
• Study First Submitted QC: 2021-07-02
• Last Update Submitted: 2021-07-02
• Study First Posted: 2021-07-06
• Last Update Posted: 2021-07-06

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 20

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;

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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;

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
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 Outcome Measures

Name	Time	Method
(ALS FRS)	1 year after recruitment	Amyotrophic Lateral Sclerosis Function Scale (ALS FRS)

Trial Locations

Locations (1)

Peking Yniversity Third Hospital; 🇨🇳 Beijing, China