Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study

Aims and objectives This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients’ self‐perceived burden and their caregivers’ burden. Background Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. Design A cross‐sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. Methods Amyotrophic lateral sclerosis patients’ self‐perceived burden and caregivers’ burden were assessed by the Self‐Perceived Burden Scale and Zarit‐Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life‐Bref. The amyotrophic lateral sclerosis Functional Rating Scale‐Revised questionnaire was used to estimate patients’ physical function. Results Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life‐Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale‐Revised, higher Self‐Perceived Burden Scale and higher Zarit‐Burden Interview scores. Self‐Perceived Burden Scale scores were associated with patients’ knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit‐Burden Interview scores were associated with caregivers’ age, patients’ motor function and out‐of‐pocket payment. Conclusion With increase in amyotrophic lateral sclerosis patients’ self‐perceived burden and caregivers’ burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self‐perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out‐of‐pocket payment experienced more care burdens. Relevance to clinical practice Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients might benefit patients in China or other South‐East Asian countries under the Confucian concept of ethics. There is an urgent demand to expand medical insurance coverage to cover amyotrophic lateral sclerosis in China and other developing countries. Long and adequate supports are needed for relieving caregiver's burden. To improve the quality of life of patients, relieving the patients’ SBP and caregivers’ burden is likely to be not only required, but also essential.