Investigation on Home Care Needs of ALS Patients and Their Caregivers

Amyotrophic Lateral Sclerosis Clinical Trial

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT04950231
• Other study ID #: M2020082
• Status: Completed
• Start date: September 1, 2020
• Est. completion date: May 1, 2021

Study information

• Verified date: June 2021
• Source: Peking University Third Hospital
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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)

Recruitment information / eligibility

• Status: Completed
• Enrollment: 20
• Est. completion date: May 1, 2021
• Est. primary completion date: February 1, 2021
• Accepts healthy volunteers: No
• Gender: All
• Age group: N/A and older

Eligibility

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;

Related Conditions & MeSH terms

• Amyotrophic Lateral Sclerosis
• Motor Neuron Disease

Intervention

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.

Locations

Country	Name	City	State
China	Peking Yniversity Third Hospital	Beijing

Sponsors (1)

Lead Sponsor	Collaborator
Peking University Third Hospital

Country where clinical trial is conducted

China, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Scale	Scale: Self-designed questionnaire Questionnaire on the Degree of Home Nursing Knowledge Needs of ALS Patients or Their Family Members;	1 year after recruitment
Secondary	(ALS FRS)	Amyotrophic Lateral Sclerosis Function Scale (ALS FRS)	1 year after recruitment