Amyotrophic Lateral Sclerosis
Conditions
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.
Interventions
OTHERsurvey
The general information, home care status and functional status of ALS patients and family caregivers were collected.
Sponsors
Peking University Third Hospital
Study design
Observational model
ECOLOGIC_OR_COMMUNITY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Healthy volunteers
No
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.
Exclusion criteria
\-
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| the Barthel index of ADL | At the time of survey (day 0) | the Barthel index of ADL |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Caregiver Burden Inventory, CBI | At the time of survey (day 0) | Caregiver Burden Inventory, CBI |
Countries
China
Outcome results
None listed