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

• Conditions: Amyotrophic Lateral Sclerosis
• Interventions: Other: survey

• Registration Number: NCT04953481
• Lead Sponsor: Peking University Third Hospital

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.

Study Timeline

• Study Start: 2021-01-01
• Study First Submitted: 2021-06-27
• Status Verified: 2021-07
• Study First Submitted QC: 2021-07-07
• Last Update Submitted: 2021-07-07
• Study First Posted: 2021-07-08
• Last Update Posted: 2021-07-08
• Primary Completion: 2021-12-31
• Study Completion: 2022-12-31

Recruitment & Eligibility

• Status: UNKNOWN
• Sex: All
• Target Recruitment: 252

Inclusion Criteria

The inclusion criteria of ALS patients:

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.

   The inclusion criteria of caregivers: ① the primary caregiver designated by the patient was responsible for the primary care;

   • 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.

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Exclusion Criteria

Exclusion criteria of ALS patients:

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

② They are participating in other intervention projects.

Exclusion criteria of caregivers:

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

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Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Amyotrophic lateral sclerosis group	survey	Patients with amyotrophic lateral sclerosis undergoing home care.

Primary Outcome Measures

Name	Time	Method
the Barthel index of ADL	At the time of survey (day 0)	the Barthel index of ADL

Secondary Outcome Measures

Name	Time	Method
Caregiver Burden Inventory, CBI	At the time of survey (day 0)	Caregiver Burden Inventory, CBI

Trial Locations

Locations (1)

Peking University Third Hospital; 🇨🇳 Beijing, China