Path Analysis Between Family Functioning and Mental Health in People With Neuropathic Pain: Roles of Pain Intensity, Self-Perceived Burden, Pain Catastrophizing, and Functional Status.

PURPOSE: This study aimed to explore the pathways between family functioning and mental health in people with neuropathic pain, as well as to discuss the mediating role of pain intensity, self-perceived burden, pain catastrophizing, and functional status. DESIGN: Cross-sectional design reported using the STROBE guidelines. METHODS: A total of 277 people with neuropathic pain completed face-to-face questionnaires to evaluate family functioning, pain intensity, pain catastrophizing, self-perceived burden, functional status, and mental health. Structural equation modeling (SEM) was constructed to analyze the pathways between these variables. RESULTS: The positive total effect between family functioning and mental health was significant and partially mediated by self-perceived burden, pain catastrophizing, and functional status. In addition, better family functioning was associated with higher pain intensity, which worsens self-perceived burden, pain catastrophizing, and functional status, masking 23.68% of the positive effects between family functioning and mental health. CONCLUSIONS: Better family functioning was associated with better mental health, as explained by reduced self-perceived burden, reduced pain catastrophizing, and improved functional status. However, this benefit may be partially masked by the relationship that better family functioning explains higher pain intensity. CLINICAL IMPLICATIONS: Nurses' comprehensive assessment and management of neuropathic pain from both the family and individual levels, such as family functioning, pain intensity, self-perceived burden, pain catastrophizing, and functional status, may be beneficial in promoting patients' mental health. In addition, it is necessary to identify why good family functioning is associated with higher pain intensity and intervene in this regard.

Pain intensity and self-perceived burden mediate the relationship between family functioning and pain catastrophizing in patients with neuropathic pain.

This cross-sectional study aimed to investigate the relationship between family functioning, pain intensity, self-perceived burden, and pain catastrophizing. Moreover, we also wanted to explore the multiple mediating roles of pain intensity and self-perceived burden. From October 2022 to March 2023, 252 Chinese people with neuropathic pain completed face-to-face questionnaires to assess family functioning, pain intensity, self-perceived burden, and pain catastrophizing. Data analysis was done using descriptive statistics and a structural equation model. The results showed better family functioning was significantly associated with more intense pain, less self-perceived burden, and less pain catastrophizing. Mediation analysis showed that family functioning could indirectly affect pain catastrophizing through pain intensity and self-perceived burden in addition to a direct effect on pain catastrophizing. Moreover, the mediating variable of pain intensity played a masking role. These findings suggest that good family functioning can effectively reduce the self-perceived burden and pain catastrophizing in patients with neuropathic pain. However, family functioning cannot show its maximum effectiveness, and it may be necessary to construct a model of family functioning suitable for patients with neuropathic pain in the future.

Intolerance of uncertainty, cognitive fusion, coping self-efficacy and self-perceived burden in patients diagnosed with cancer.

BACKGROUND: As the proportion of older people worldwide increases, cancer cases and deaths from cancer are rising. Suffering from cancer has a profound impact on the daily lives of patients and their families. Cancer patients often perceive themselves as a burden, which affects their quality of life; therefore, this study investigated the relationship between intolerance of uncertainty, cognitive fusion, and self-perception as burdens and the mediating role of coping self-efficacy in patients diagnosed with cancer. METHODS: In this descriptive, correlational, and structural equation modeling study, 400 patient diagnosed with cancer who were hospitalized in the oncology ward of Imam Khomeini Hospital in Ardabil in the first half of 2022 were selected as the sample and answered Casino et al. self-perceived burden questionnaire, Gillanders et al. cognitive fusion questionnaire, Carleton et al. uncertainty intolerance scale, and Merleau et al. cancer behavior scale. RESULTS: Based on the results, the fitting indices of the research conceptual model were confirmed. Intolerance of uncertainty, cognitive fusion, and coping self-efficacy had a direct and significant relationship with self-perceived burden in patients diagnosed with cancer (p < 0.01); also, intolerance of uncertainty and cognitive fusion through coping self-efficacy had an indirect effect on self-perceived burden in patients diagnosed with cancer (p < 0.05). CONCLUSION: Therefore, intolerance of uncertainty, cognitive fusion, and coping self-efficacy plays a substantial role in the incidence of self-perceived burden in patients diagnosed with cancer and targeting these three components by psychological therapies can reduce the perception of self-perception as burden which is effective in patients diagnosed with cancer.

Impact of alexithymia on suicidal ideation among patients with ovarian cancer: a moderated mediation model of self-perceived burden and general self-efficacy.

PURPOSE: Suicidal ideation (SI) and alexithymia are common psychological problems among patients with cancer. Studying how alexithymia predicts SI is helpful for its intervention and prevention strategies. The present study aimed to investigate whether self-perceived burden (SPB) mediates the impact of alexithymia on SI and if general self-efficacy moderates the associations of alexithymia with SPB and SI. METHODS: To measure SI, alexithymia, SPB, and general self-efficacy, 200 patients with ovarian cancer at all stages regardless of the type of treatment completed the Chinese version of the Self-Rating Idea of Suicide Scale, Toronto Alexithymia Scale, Self-Perceived Burden Scale, and General Self-Efficacy Scale in a cross-sectional study. The PROCESS macro for SPSS v4.0 procedure was applied to perform moderated mediation analysis. RESULTS: SPB significantly mediated the positive impact of alexithymia on SI (a×b = 0.082, 95% confidence interval [CI]: 0.026, 0.157). General self-efficacy significantly moderated the positive association between alexithymia and SPB (ß = -0.227, P < 0.001). The mediating role of SPB was gradually reduced as general self-efficacy grew (low: 0.087, 95% CI: 0.010, 0.190; medium: 0.049, 95% CI: 0.006, 0.108; high: 0.010, 95% CI: -0.014, 0.046). Thus, a moderated mediation model involving SPB and general self-efficacy for explaining how alexithymia causes SI was supported. CONCLUSION: Alexithymia could cause SI by inducing SPB among patients with ovarian cancer. General self-efficacy could attenuate the association between alexithymia and SPB. Interventions aimed at reducing SPB and enhancing general self-efficacy could reduce SI by partially preventing and attenuating the impact of alexithymia.

Effects of family function, depression, and self-perceived burden on loneliness in patients with type 2 diabetes mellitus: a serial multiple mediation model.

BACKGROUND: Type 2 Diabetes mellitus (T2DM) has become a major lifestyle disease endangering human health worldwide. Patients with T2DM face varying degrees of loneliness, which adversely affects their family and the larger society. This study investigates the serial multiple mediating roles of depression and self-perceived burden between family function and loneliness in the T2DM population of China. METHODS: In total, 260 T2DM patients were included. They rated themselves based on UCLA Loneliness Scale, Self-Rating Depression Scale, Self-Rating Anxiety Scale, Family Care Index, and Self-Perceived Burden Scale. Pearson and Spearman correlation analyses were conducted to clarify the association among variables. The SPSS macro-PROCESS program was used for a series of multiple mediation analyses. RESULTS: Family function, depression, self-perceived burden, and loneliness were significantly correlated (P < 0.01). Family function not only has a direct negative impact (effect = -2.809; SE = 0.213; 95%CI: LL = -3.228, UL = -2.390) on loneliness, but also has an indirect impact on loneliness through the independent mediating role of depression (effect = -0.862; SE = 0.165; 95%CI: LL = -1.202, UL = -0.567) and self-perceived burden (effect = -0.288; SE = 0.107; 95%CI: LL = -0.525, UL = -0.114) and the chain mediating role of depression and self-perceived burden (effect = -0.202; SE = 0.066; 95%CI: LL = -0.342, UL = -0.088). CONCLUSIONS: Diversified interventions aimed at improving family function of T2DM patients would help in reducing the level of depression and self-perceived burden, and ultimately reducing loneliness.

The effect of pain social support on kinesiophobia in older patients with rheumatoid arthritis: The mediating role of self-perceived burden.

OBJECTIVES: This study would investigate the role of self-perceived burden in mediating the relationship between pain social support and kinesiophobia. METHODS: A convenience sampling method was used to survey 386 older patients with rheumatoid arthritis in a hospital in Liaoning Province. They were surveyed using the general demographic questionnaire, pain social support scale (SPQ), self-perceived burden scale (SPBS), and tampa scale of kinesiophobia(TSK-11). RESULTS: Pain social support had a negative correlation with kinesiophobia(r=-0.336, p < 0.01). The self-perceived burden was positively correlated with kinesiophobia(r = 0.583, p < 0.01). The mediating effect of self-perceived burden accounted for 43.40% of the total effect. CONCLUSIONS: The study had shown the mediating role of self-perceived burden to be beneficial in reducing kinesiophobia in older rheumatoid arthritis patients.

Systematic review on factors associated with self-perceived burden among cancer patients.

INTRODUCTION: Cancer is the leading cause of death in the world. There was a high prevalence of high self-perceived burden (SPB) among cancer patients and this could bring adverse consequences to the physical and mental health of cancer patients, which can lead to suicide if not treated well. This review aims to determine the prevalence of SPB among cancer patients and its risk factors. METHODS: Published journals before September 2021, from five databases (PubMed, ScienceDirect, Springer, Cochrane, and CNKI) were retrieved according to the keywords. The keywords used included cancer patients, terminally ill patients, cancer, SPB, self-perceived burden, self-burden, self-perceived, factor, predictor, associated factor, determinants, risk factor, prognostic factor, covariate, independent variable, and variable. The quality of the inclusion and exclusion criteria was independently reviewed by three researchers. RESULTS: Out of 12,712 articles, there are 22 studies met the eligibility criteria. The prevalence of SPB among cancer patients ranged from 73.2 to 100% in Malaysia, China, and Canada. Most of them had moderate SPB. Out of the reported factors, age, gender, marital status, ethnicity, residence, educational level, occupational status, family income, primary caregiver, payment methods, disease-related factors, psychological factors, and physical factors were mostly reported across the studies. CONCLUSIONS: In conclusion, SPB prevalence is high in cancer patients. Therefore, hospitals, non-governmental organizations, relevant policymakers, and communities can provide special programs for high-risk groups to provide psychological guidance or design corresponding interventions to reduce the SPB level of patients and improve the quality of life.

Self-perceived burden predicts lower quality of life in advanced cancer patients: the mediating role of existential distress and anxiety.

BACKGROUND: Self-perceived burden (SPB) is an important predictor of quality of life (QoL) in patients with advanced cancer. However, the mechanism how SPB affects patients' QoL remains unclear. This study aimed to examine the potential mediating roles of existential distress (ED) and anxiety in the relationship between SPB and QoL. METHODS: A multicenter cross-sectional study was conducted. 352 advanced cancer patients were recruited from three hospitals in southeast of China. The Self-perceived Burden Scale, the Existential Distress Scale, the Hospital Anxiety and Depression Scale, and the Quality-of-Life Concerns in the End of Life Questionnaire were adopted to collect data. Hayes's bootstrapping method was used to analyze the data. RESULTS: SPB was negatively associated with QoL (P < 0.01). ED and anxiety partially mediated the relationship between SPB and QoL (P < 0.01). Moreover, ED had direct effects on anxiety, and sequentially QoL (P < 0.01). The serial multiple mediation model of SPB accounted for 73.25% of the variance in QoL in advanced cancer patients. CONCLUSIONS: ED and anxiety are important mediating factors between SPB and QoL in advanced cancer patients. To improve patients' QoL, comprehensive interventions for reducing anxiety and ED are highly recommended in clinical practices.

Illness uncertainty, self-perceived burden and quality of life in patients with chronic myeloid leukaemia: A cross-sectional study.

AIMS AND OBJECTIVES: To investigate the relationship between illness uncertainty, self-perceived burden and quality of life and explore the mediating role of self-perceived burden between illness uncertainty and quality of life in patients with chronic myeloid leukaemia. BACKGROUND: Patients with chronic myeloid leukaemia need long-term, potentially lifelong therapy to control the disease, which affects their quality of life. There is a need for exploring potentially changeable factors to develop interventions. Little is known about the effects of illness uncertainty and self-perceived burden on quality of life in this population. DESIGN: A cross-sectional study. METHODS: A convenience sample of 248 patients with chronic myeloid leukaemia was recruited from four university hospitals from February to August 2020. Participants were assessed with the Mishel Uncertainty in Illness Scale, Self-Perceived Burden Scale, and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire. The STROBE checklist was used to report the results. RESULTS: Illness uncertainty and self-perceived burden were negatively associated with quality of life in patients with chronic myeloid leukaemia. Self-perceived burden partially mediated the relationship between illness uncertainty and quality of life. The indirect effect was -0.101, accounting for 22.9% of the total effect. CONCLUSION: The findings revealed the relationship between illness uncertainty, self-perceived burden and quality of life in patients with chronic myeloid leukaemia. Self-perceived burden exerted a mediating role between illness uncertainty and quality of life in this population. RELEVANCE TO CLINICAL PRACTICE: This study alerts healthcare providers to pay attention to patients' illness uncertainty and self-perceived burden, which can contribute to develop effective interventions to improve the quality of life among patients with chronic myeloid leukaemia in the clinical practice.

Loneliness and Psychological Distress in Women Diagnosed with Ovarian Cancer: Examining the Role of Self-Perceived Burden, Social Support Seeking, and Social Network Diversity.

The aim of the present study was to examine the role of self-perceived burden, social support seeking, and social network diversity in loneliness and psychological distress among women with ovarian cancer. A cross-sectional design was employed whereby 130 women diagnosed with ovarian cancer, recruited through various online sources (e.g., social media), completed the study via Qualtrics. Participants completed questionnaires that assessed self-perceived burden, social support seeking, social network diversity, loneliness, and psychological distress (anxiety, depressive symptoms). The models examined indicated that there were indirect effects of self-perceived burden and social network diversity on psychological distress via loneliness. Social support seeking was not significant in the models. Loneliness, self-perceived burden, and social network diversity should be of clinical concern among those working to support women with ovarian cancer. Future studies on longitudinal patterns or examining other factors associated with loneliness are needed to better understand the mental health of women with ovarian cancer.

Factors associated with kinesiophobia in Chinese older adults patients with osteoarthritis of the knee: A cross-sectional survey.

OBJECTIVES: To identify important determinants of kinesiophobia in older adults with osteoarthritis of the knee bassed on demographics, social support and pain, and self-perceived burden factors. METHODS: A cross-sectional survey of 304 older adults patients with knee osteoarthritis from two hospitals in Jinzhou, Liaoning, China. General Demographic Questionnaire, the Social Support and Pain Scale (SPQ), the Self-Perceived Burden Scale (SPBS), and the Tampa Kinesiophobia Scale (TSK-11) were used to collect the data. RESULTS: The results showed that the prevalence of kinesiophobia in older adults with osteoarthritis of the knee was 57.89%. Marital status, education, knowledge of the condition, pain level, SPQ, and SPBS levels were significant determinants of kinesiophobia, which together explained 43.2% of the variance. CONCLUSIONS: The prevalence of kinesiophobia in older adults with knee osteoarthritis is very high. Health care workers should take early intervention measures to improve social support and pain and reduce the self-perceived burden, thereby promoting recovery from disease.

Guilt for perceiving oneself as a burden in healthy older adults. Associated factors.

METHODS: Participants were 317 community-dwelling people over 60 years without cognitive or functional limitations. A path model that explores the role of self-perceived burden in the relationship between negative self-perception of aging, perceived control, depressive symptoms and guilt associated with self-perception as a burden was analyzed. RESULTS: The model presented excellent fit to the data, explaining 41% of the depressive symptomatology and 45% of guilt for perceiving oneself as a burden. Negative self-perceptions of aging, lower sense of control, and a perception of being a burden were significantly associated with depressive symptoms and guilt for perceiving oneself as a burden. DISCUSSION: This study documents potential correlates of psychological distress in older adults with no explicit physical or cognitive problems, suggesting paths through which feelings of guilt for perceiving oneself as a burden may be reported by this population.

Early detection of mental illness for women suffering high-risk pregnancies: an explorative study on self-perceived burden during pregnancy and early postpartum depressive symptoms among Chinese women hospitalized with threatened preterm labour.

BACKGROUND: The mental health of pregnant women, particularly those with elevated risks, has been an issue of global concern. Thus far, few studies have addressed the mental health of pregnant women with threatened preterm labour (TPL). This study investigated the prevalence of self-perceived burden (SPB) among Chinese women hospitalized due to TPL during pregnancy and early postpartum depressive disorders, exploring the effect of SPB and other potential risk factors on the early signs of postpartum depressive disorders. METHODS: A self-reported survey was conducted in the obstetrics department of Anhui Provincial Hospital, China. Women hospitalized with TPL were approached 1 week after delivery. One hundred fifty women were recruited from January 2017 to December 2017. The Self-Perceived Burden Scale (SPBS) and Edinburgh Postnatal Depression Scale (EPDS) were the main measures. Descriptive statistics, Spearman correlations, and a multiple logistic regression were employed for data analysis. RESULTS: SPB and early postpartum depressive disorders were commonly experienced by Chinese women hospitalized with TPL, and SPB was positively and significantly correlated with depressive symptoms. A multiple logistic regression analysis revealed that for the women hospitalized with TPL during pregnancy, the emotional aspect of SPB (OR = 1.42, 95% CI = 1.11-1.83, p = 0.006), age (OR = 1.14, 95% CI = 1.02-1.27, p = 0.023), occupation (OR = 3.48, 95% CI = 1.18-10.20, p = 0.023), the history of scarred uterus (OR = 7.96, 95% CI = 1.49-42.48, p = 0.015), the delivery mode of the present birth (OR = 6.19, 95% CI = 1.72-22.30, p = 0.005), and family support during pregnancy (OR = 0.60, 95% CI = 0.45-0.82, p = 0.001) were significant factors predicting early postpartum depressive symptoms. CONCLUSION: This study indicates that SPB and early postpartum depressive disorders are prevalent mental issues among Chinese women hospitalized with TPL, and that SPB, especially perceived emotional burden, is a strong predictor of early postpartum depressive disorders. Our study suggests the necessity of paying attention to mental health issues, e.g. SPB and postpartum depressive symptoms among hospitalized women with TPL, and providing appropriate interventions at the prenatal stage to prevent adverse consequences.

Self-perceived burden and its associations with health-related quality of life among urologic cancer patients.

OBJECTIVE: This study examined the prevalence of self-perceived burden (SPB) and its association with health-related quality of life (HRQoL) among urologic cancer patients. METHODS: This was a prospective, cross-sectional study. A total of 429 respondents diagnosed with urologic cancers (prostate, bladder and renal cancer) from Sarawak General Hospital and Subang Jaya Medical Centre in Malaysia were interviewed by using a structured questionnaire. SPB and HRQoL were measured by the Self-perceived Burden Scale and the Functional Assessment of Cancer Therapy-General 7 Item Scale respectively. RESULTS AND CONCLUSION: Self-perceived burden was experienced by 73.2% of the respondents. Respondents who had a lower education level, a monthly household income

Relationships and burden: An empirical-ethical investigation of lived experience in home nursing arrangements.

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients' subjective feelings of being a burden and on caregivers' willingness to carry the burden in home care. This article uses empirical material from semi-structured interviews conducted with older people affected by multiple chronic conditions and in need of long-term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home-care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical-ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.

The impact of motivational interviewing on self-perceived burden in patients receiving therapeutic plasma exchange.

BACKGROUND: Autoimmune disorders and neurodegenerative disorders take a physical and emotional toll on patients that undergo therapeutic plasma exchange (TPE) treatments. Previous literature has shown that these patients may feel a greater sense of self-burden. Motivational Interviewing (MI) is a technique used in various settings that has the potential to decrease feelings of self-burden. MI for patients who receive TPE has not been tested. The purpose of this study was to examine the impact of MI in patients with a neurodegenerative diagnosis (eg, transverse myelitis, myasthenia gravis, multiple sclerosis, and chronic inflammatory demyelinating polyneuropathy) that are undergoing TPE treatments. METHODS: This was a prospective, non-randomized, longitudinal study of the impact of MI with patients at high risk of sense of self-burden who underwent apheresis treatments. Consented patients underwent three to six MI sessions with a trained clinician. Patients completed a self-report baseline and post-test of self-perceived burden. RESULTS: Thirty participants consented to the study; 27 were included in the analysis. The Self-Perceived Burden Scale scores were significantly higher at baseline (m = 26.2) when compared to scores post MI sessions (m = 21.48, P < .05). The number of MI sessions (3, 4, 5, 6 sessions) did not significantly impact the outcome score (r2 = 0.001; P = .901). CONCLUSION: MI is a straightforward technique that is feasible and shown to be effective to be used by bedside clinicians while working with patients who receive TPE to decrease levels of self-perceived burden.

Changes in and modifiable patient- and family caregiver-related factors associated with cancer patients' high self-perceived burden to others at the end of life: A longitudinal study.

This prospective, longitudinal study explored changes in and modifiable factors associated with high self-perceived burden to others (SPB) among a convenience sample of 276 dyads of terminally ill Taiwanese cancer patients and their family caregivers over patients' last year of life. High SPB was evaluated by scores ≥20 on the Self-Perceived Burden Scale. Modifiable factors of high SPB included factors related to both patients (i.e., symptom distress, functional dependence and coping capacity) and caregivers (i.e., caregiving burden, depressive symptoms and quality of life [QOL]). Modifiable factors of high SPB were identified by multivariate logistic regression modelling with the generalised estimating equation while controlling for demographic factors. We found that patients tended to experience high SPB if they had more symptom distress. In contrast, the likelihood of high SPB was significantly lower if patients had greater coping capacity and their caregivers reported better QOL. High SPB was not associated with patients' functional dependence, caregivers' caregiving burden and depressive-symptom level while providing end-of-life (EOL) care, and time proximity to death. Healthcare professionals may alleviate terminally ill cancer patients' high SPB at EOL through palliative care that adequately manages patients' physical symptom distress, enhances patients' coping capacity and improves family caregivers' QOL.

Anxiety sensitivity moderates the painful effects of feeling burdensome to others.

Perceived burdensomeness (PB), the perception of being a burden to others, is associated with pain and physical symptoms. Anxiety sensitivity (AS), the fear of arousal-related sensations, arising from beliefs that the sensations may have adverse personal consequences (physical, cognitive, and social), may increase risk for pain responding, particularly in anxiety-provoking (e.g. socially threatening) contexts. Accordingly, individuals high in AS may have a stronger pain response when experiencing PB than those low in AS. Undergraduate participants (n = 262) completed the Anxiety Sensitivity Index (ASI-3), and then were randomly assigned to re-live an experience when they were either burdensome to others (burdensome condition) or contributed equally to a group (control condition). Both social and physical self-reported pain were assessed post-manipulation. Those high in AS reported significantly higher pain ratings in the burdensome condition than the control condition; for those low in AS, pain did not change across conditions. In particular, being fearful of the physical repercussions of anxiety (AS physical concerns) while also feeling burdensome to others was associated with greater physical pain. AS may exacerbate the already painful effects of feeling burdensome to others, and may have important implications for the development of future suicide- and pain-related interventions.

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.