Investigation on Home Care Needs of ALS Patients and Their Caregivers

Peking University

Status: Completed

Conditions: Amyotrophic Lateral Sclerosis

Treatments: Other: The questionnaire survey

Study type: Observational

Funder types: Other

Identifiers

NCT04950231

M2020082

Details and patient eligibility

About

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.

Full 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)

Enrollment: 20 patients

Sex: All

Volunteers: No Healthy Volunteers

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;