Analysing the influencing factors on caregivers' burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining

Ling Lian; Minying Zheng; Ruojie He; Jianing Lin; Weineng Chen; Zhong Pei; Xiaoli Yao

doi:10.1136/bmjopen-2022-066402

Analysing the influencing factors on caregivers' burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining

BMJ Open. 2022 Sep 21;12(9):e066402. doi: 10.1136/bmjopen-2022-066402.

Authors

Ling Lian¹, Minying Zheng¹, Ruojie He¹, Jianing Lin¹, Weineng Chen¹, Zhong Pei¹, Xiaoli Yao²

Affiliations

¹ Department of Neurology, The First Affiliated Hospital, Sun Yat-sen University; Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, National Key Clinical Department and Key Discipline of Neurology, No.58 Zhongshan Road 2, Guangzhou, 510080, China.
² Department of Neurology, The First Affiliated Hospital, Sun Yat-sen University; Guangdong Provincial Key Laboratory of Diagnosis and Treatment of Major Neurological Diseases, National Key Clinical Department and Key Discipline of Neurology, No.58 Zhongshan Road 2, Guangzhou, 510080, China yaoxiaol@mail.sysu.edu.cn.

Abstract

Objectives: There is significant burden on caregivers of patients with amyotrophic lateral sclerosis (ALS). However, only a few studies have focused on caregivers, and traditional research methods have obvious shortcomings in dealing with multiple influencing factors. This study was designed to explore influencing factors on caregiver burden among ALS patients and their caregivers from a new perspective.

Design: Cross-sectional study.

Setting: The data were collected at an affiliated hospital in Guangzhou, Guangdong, China.

Participants: Fifty-seven pairs of patients with ALS and their caregivers were investigated by standardised questionnaires.

Main outcome measures: This study primarily assessed the influencing factor of caregiver burden including age, gender, education level, economic status, anxiety, depression, social support, fatigue, sleep quality and stage of disease through data mining. Statistical analysis was performed using SPSS 24.0, and least absolute shrinkage and selection operator (LASSO) regression model was established by Python 3.8.1 to minimise the effect of multicollinearity.

Results: According to LASSO regression model, we found 10 variables had weights. Among them, Milano-Torinos (MITOS) stage (0-1) had the highest weight (-12.235), followed by younger age group (-3.198), lower-educated group (2.136), fatigue (1.687) and social support (-0.455). Variables including sleep quality, anxiety, depression and sex (male) had moderate weights in this model. Economic status (common), economic status (better), household (city), household (village), educational level (high), sex (female), age (older) and MITOS stage (2-4) had a weight of zero.

Conclusions: Our study demonstrates that the severity of ALS patients is the most influencing factor in caregiver burden. Caregivers of ALS patients may suffer less from caregiver burden when the patients are less severe, and the caregivers are younger. Low educational status could increase caregiver burden. Caregiver burden is positively correlated with the degree of fatigue and negatively correlated with social support. Hopefully, more attention should be paid to caregivers of ALS, and effective interventions can be developed to relieve this burden.

Keywords: ALS; LASSO; MITOS; caregiver burden; fatigue; social support.

MeSH terms

Amyotrophic Lateral Sclerosis* / therapy
Caregiver Burden
Caregivers*
Cross-Sectional Studies
Data Mining
Fatigue
Female
Humans
Male
Quality of Life