Investigation on Home Care Needs of ALS Patients and Their Caregivers

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

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.

Study Overview

• Status: Completed
• Conditions: Amyotrophic Lateral Sclerosis
• Intervention / Treatment: Other: The questionnaire survey

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 Type: Observational
• Enrollment (Actual): 20

Contacts and Locations

Study Locations

• China
  • Beijing, China
    • Peking Yniversity Third Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Six rigorously trained nurses in charge will issue and collect the questionnaire, two researchers will enter the data, one researcher will perform statistical analysis of the data, and the other two researchers will control the quality of the whole process.

Description

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;

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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 Outcome Measures

Outcome Measure	Measure Description	Time Frame
(ALS FRS)	Amyotrophic Lateral Sclerosis Function Scale (ALS FRS)	1 year after recruitment

Collaborators and Investigators

• Sponsor: Peking University Third Hospital

Study record dates

Study Major Dates

• Study Start (Actual): September 1, 2020
• Primary Completion (Actual): February 1, 2021
• Study Completion (Actual): May 1, 2021

Study Registration Dates

• First Submitted: June 27, 2021
• First Submitted That Met QC Criteria: July 2, 2021
• First Posted (Actual): July 6, 2021

Study Record Updates

• Last Update Posted (Actual): July 6, 2021
• Last Update Submitted That Met QC Criteria: July 2, 2021
• Last Verified: June 1, 2021

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Metabolic Diseases; Central Nervous System Diseases; Nervous System Diseases; Neuromuscular Diseases; Neurodegenerative Diseases; Spinal Cord Diseases; TDP-43 Proteinopathies; Proteostasis Deficiencies; Motor Neuron Disease; Amyotrophic Lateral Sclerosis
• Other Study ID Numbers: M2020082

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No