Home Care Needs and Current Nursing Status of Patients With Amyotrophic Lateral Sclerosis

NCT ID: NCT04953481

Last Updated: 2021-07-08

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 252 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2021-01-01
• Study Completion Date: 2022-12-31

Brief Summary

The purpose of this study is to comprehensively investigate and analyze the home care needs and status quo of ALS patients in China, and to clarify their home care needs and status quo, so as to provide reference for the development of home care service planning and policy measures for ALS patients.

Detailed Description

Amyotrophic lateral sclerosis (ALS) is the most common type of motor neuron disease. It is common in middle-aged and elderly people. Progressive skeletal muscle weakness, atrophy, fascicular fibrillation, bulbar paralysis and pyramidal tract sign are the main clinical manifestations. The survival time is usually 3-5 years. As the pathogenesis of ALS is not fully understood, there is no specific treatment for ALS. The clinical treatment mode of most patients with ALS is hospitalization at the end of the disease and maintenance treatment at home during the disease progression. At present, there are few reports on the home care needs and nursing status of ALS patients in China. This study is a cross-sectional survey. Based on consulting the relevant literature and consulting experts' opinions, the researchers designed the questionnaire of home care needs and nursing status of ALS patients, The convenience sampling method was used to select 126-252 ALS outpatients, 126-252 ALS inpatients, and 126-252 ALS family members from a third class a general hospital in Beijing. The needs and status of home care of ALS patients in China were comprehensively investigated and analyzed, and the needs and status of home care were clarified, so as to provide reference for the development of home care service planning and policy measures for ALS patients.

Conditions

Amyotrophic Lateral Sclerosis

Study Design

• Observational Model Type: ECOLOGIC_OR_COMMUNITY
• Study Time Perspective: CROSS_SECTIONAL

Study Groups

Amyotrophic lateral sclerosis group

Patients with amyotrophic lateral sclerosis undergoing home care.

survey

Intervention Type: OTHER

The general information, home care status and functional status of ALS patients and family caregivers were collected.

Caregiver group

Caregivers

No interventions assigned to this group

Interventions

survey

The general information, home care status and functional status of ALS patients and family caregivers were collected.

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

-

1. They met the diagnostic criteria of Chinese guidelines for the diagnosis and treatment of amyotrophic lateral sclerosis; ② Receiving care at home; ③ No cognitive impairment (if the patient is unable to talk and write due to illness, the family members can express it for the patient);

④ Informed consent, willing to participate in this study;

⑤ No mental illness.

• They are relatives of patients;

• No payment for care; ④ Informed consent, willing to participate in this study;

• No mental illness; ⑥ There was no cognitive impairment.

Exclusion Criteria

-

① severe physical diseases, such as malignant tumor, liver and kidney dysfunction, etc;

② They are participating in other intervention projects.

• severe physical diseases, such as malignant tumor, liver and kidney dysfunction, etc; ② They are participating in other intervention projects.

• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Peking University Third Hospital

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

Peking University Third Hospital

Beijing, , China

Site Status: RECRUITING

Countries

China

Facility Contacts

Baohua Li

Role: primary

lianglbh@126.com

15611908581

Other Identifiers

M2021023

Identifier Type: -

Identifier Source: org_study_id