Life In Caregivers Of Patients Research Articles

Quality of life in caregivers of patients receiving chimeric antigen receptor T-cell therapy.

Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T-cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment-related distress in caregivers in the first 6 months after CAR T-cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. Caregivers completed measures examining QOL and burden before patients' CAR T-cell therapy and at days 90 and 180. Treatment-related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p<.01). Conversely, anxiety worsened over time (p<.01). Caregiver burden and treatment-related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p<.01). Worse caregiver treatment-related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps<0.01). Some CAR T-cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T-cell therapy caregivers.

Surviving but not thriving: Burden of care and quality of life for caregivers of patients with schizophrenia spectrum disorders and comorbid substance use in South Africa.

Schizophrenia and schizophrenia spectrum disorders can be devastating for the patient and family. Early recognition and interventions for caregivers, who form part of an overburdened 'invisible health care system' in resource-limited settings with an extensive mental health treatment gap, are crucial for improved outcomes for patients and carers. The study investigated the burden of care and quality of life (QOL) among caregivers of patients with schizophrenia spectrum disorders and its determinants in South Africa. We conducted a study of 101 matched-paired samples of family caregivers and adult patients (N=202) seeking care from two psychiatric hospitals in South Africa. The assessment consisted of the Zarit Burden Interview for caregiver burden, WHO-Quality of life scale and WHO ASSIST for substance use. Most caregivers (n=81; 80.2%) reported high or severe caregiver burden. None of the four QOL domains surpassed the 60% mark where the observed scores (out of 100) for physical health (56.2, SD=16.2), psychological health (55.3, SD=17,6), social relationships (47.1, SD=19.3) and environment (53.5, SD=16.3). Lower burden was associated with greater QOL score across all four domains among caregivers (p ≤ .05). Lower educational attainment was associated with poorer QOL, and higher household income with higher QOL in certain domains. Patient comorbid alcohol (p ≤ .05) and high-risk cannabis use (p < .02) were the only significant factors of increased caregiver burden scores. The high caregiver burden, and its association with alcohol and cannabis use, suggests the need to address comorbid substance use and early pragmatic support for families.

Quality of Life in Caregivers of Patients Randomized to Standard- Versus Extended-Hours Hemodialysis

IntroductionCaregivers are essential for the health, safety, and independence of many patients and incur financial and personal cost in this role, including increased burden and lower quality of life (QOL) compared to the general population. Extended-hours hemodialysis may be the preference of some patients, but little is known about its effects on caregivers.MethodsForty caregivers of participants of the ACTIVE Dialysis trial, who were randomized to 12 months extended (median 24 hours/wk) or standard (12 hours/wk) hemodialysis, were included. Utility-based QOL was measured by EuroQOL–5 Dimension–3 Level (EQ-5D-3L) and Short Form–6 Dimensions (SF-6D) and health-related QOL (HRQOL) was measured by the 36-Item Short Form Health Survey (SF-36) physical component summary (PCS) and mental component summary (MCS) and the Personal Wellbeing Index (PWI) at enrolment and then every 3 months until the end of the study.ResultsAt baseline, utility-based QOL and HRQOL were similar in both groups. At follow-up, caregivers of people randomized to extended-hours dialysis experienced a greater decrease in utility-based QOL measured by EQ-5D-3L compared with caregivers of people randomized to standard hours (–0.18±0.30 vs. –0.02±0.16, P = 0.04). There were no differences between extended- and standard-hours groups in mean change in SF-6D (0.03±0.12 vs. –0.04±0.1, P = 0.8), PCS (–1.2±9.8 vs. –5.6±9.8, P = 0.2), MCS (–4.1±11.2 vs. –0.5±7.1, P = 0.4), and PWI (2.3±17.6 vs. 0.00±20.4, P = 0.9).ConclusionPoorer utility-based QOL, as measured by the EQ-5D-3L, was observed in caregivers of patients receiving extended-hours hemodialysis in this small study. Though the findings are exploratory, the possibility that mode of dialysis delivery negatively impacts on caregivers supports the prioritization of research on burden and impact of service delivery in this population.

Correlates of Quality of Life in Caregivers of Patients with Schizophrenia and Bipolar Affective Disorder: A Study From Southwestern Nigeria

Quality of life and its correlates were studied in two groups of family caregivers of patients with major mental disorders-Schizophrenia (SZ) and Bipolar Affective Disorder (BPAD). Family caregivers of SZ and BPAD patients were consecutively recruited to the study (n=100 for each group). Caregivers were screened for quality of life (QOL) measures, caregiver burden, symptoms of anxiety and depression, using the World Health Organization Quality of Life Scale (WHOQOL-BREF), the Pai and Kapur Family Burden Interview Schedule (FBIS) and the Hospital Anxiety and Depression Inventory (HADS) respectively. When compared to the caregivers of the BPAD patients, the caregivers of the SZ patients had lower QOL scores in two out of the 4 WHOQOL-BREF domains (physical and psychological domains) (p=0.001), and higher overall total caregiver burden (p=0.001). On the other hand, caregivers of the BPAD patients had higher levels of depressive symptoms (p=0.001). Increased depressive symptoms were associated with lower QOL for both groups, comprising all WHOQOLBREF domains for BPAD and 3 domains for SZ caregivers. Higher caregiver burden was associated with lower QOL for both groups. There is a need for intervention and caregiver support for the relatives of patients with bipolar disorder and schizophrenia.

The Mediator Effects of Depressive Symptoms on the Relationship between Family Functioning and Quality of Life in Caregivers of Patients with Heart Failure

BackgroundCaregivers of patients with heart failure (HF) report depressive symptoms and poor quality of life (QOL) related to caregiving and poor family functioning, placing them at risk for poor health. ObjectivesThe purpose of this study was to examine the effect of depressive symptoms on the relationship between family functioning and quality of life in the HF caregiver. MethodsA sample of 92 HF caregivers were enrolled from an ambulatory clinic at a large academic medical center. A mediation analysis was used to analyze data obtained from the Family Assessment Device (FAD), the Patient Health Questionaire-9 (PHQ-9), and the Short Form-12 Health Survey Version 2 (SF-12v2). ResultsDepressive symptoms were found to be a significant mediator in the relationship between family functioning and caregiver quality of life. ConclusionsThe results of this study suggest that interventions targeting caregiver depression and family functioning could be effective in enhancing HF caregivers’ physical and mental QOL.

Effect of an Educational Program on Care Burden and Quality of Life for Caregivers of Patients Diagnosed with Alzheimer’s Disease

Purpose: This study was undertaken to determine the effect of planned education upon the quality of life and care burden for caregivers of patients diagnosed with Alzheimer’s disease. Materials and Methods: This study, a planned pre-test post-test model with semi-experimental design, was undertaken with the caregivers for 60 patients diagnosed with Alzheimer’s disease. Data were collected using Information Request Form, Zarit Burden Interview (ZBI) and WHOQOL-BREF Quality of Life Scales. Caregivers were divided into groups of 10 participants each and a 45–60 minute planned educational program on caring for Alzheimer’s patients was provided to each group in 5 sessions. ZBI and Quality of Life Scales were again administered to the caregivers in the 1st, 2nd, and 3rd months following completion of the education. Results: Results were assessed using percentage distributions, Chi-square test, and Pearson Correlation analysis. Care burden of caregivers for Alzheimer’s patients decreased following the planned education and there was a significant and negative correlation between care burden and quality of life. As care burden decreased, quality of life increased (p&lt;0.05). Conclusion: A planned educational program reduced the care burden experienced by caregivers for Alzheimer’s patients and affected their quality of life positively. It is recommended that planned education programs be reinforced with continuous counseling services in order to minimize the care burden experienced by these caregivers and to maximize their quality of life. Keywords: Alzheimer disease; Caregiver; Care burden; Quality of life DOI: 10.7176/JHMN/75-06

The Effect of Progressive Relaxation Exercise on Caregiver Burden, Fatigue and Quality of Life in Caregivers of Patients With Advanced Cancer: Randomized Controlled Clinical Study

The Effect of Progressive Relaxation Exercise on Caregiver Burden, Fatigue and Quality of Life in Caregivers of Patients With Advanced Cancer: Randomized Controlled Clinical Study

Burden and quality of life in caregivers of patients with amputated diabetic foot.

AbstractInformal caregivers of chronically ill patients often report burden and poor quality of life. This study aimed to evaluate the impact of caring on caregivers of amputated patients with type 2 diabetes and diabetic foot. A cross‐sectional study included a convenience sample of 110 caregivers who answered: the Burden Assessment Scale, the Depression Anxiety Stress Scales, the Social Support Satisfaction Scale, the Family Assessment Device, and the Short Form Health Survey. Multiple linear hierarchical regressions were performed to identify the variables that contributed to the burden and the physical and mental quality of life. Differences in burden as well as physical and mental quality of life were found, according to several caregivers’ sociodemographic characteristics. Lower social support, more distress, and caregiver's perception of the impact of caring on the family dynamics contributed to burden. Lower distress and not having a chronic illness besides diabetes explained the physical quality of life whereas exercise and lower distress explained mental quality of life. To promote quality of life in caregivers and reduce the burden associated with caregiving, interventions should focus on social support, distress, and the practice of exercise.

Caregiver resilience and patients with severe musculoskeletal traumatic injuries

Aims This study investigated the association of resilience on caregiver burden and quality of life in informal caregivers of patients with severe traumatic musculoskeletal injuries. Methods A prospective cohort study of eligible caregivers and acutely injured trauma patients was conducted during 2018 in South East Queensland, with follow-up 3 months after patient discharge. Resilience was examined using the 10-item Connor Davidson Resilience Scale. The primary outcomes, caregiver burden and quality of life were measured respectively, using the Caregiver Strain Index and the Short Form Version 12 Health Survey. Results Baseline measures were completed with fifty-three (77%) patient/carer dyads. Thirty-eight (28%) were available for follow up at 3 months. Significant reductions from baseline were found at follow up, for levels of resilience, mental health, physical exercise and community support. In multiple regression models, caregiver resilience at follow-up independently predicted lower caregiver burden (β = −0.74, p = 0.008) and higher levels of patient physical health and function (β = −0.69, p = 0.003). Conclusions Upon commencing informal care, caregivers’ resilience, mental health and support systems are adversely affected. Higher levels of caregiver resilience appear to be protective against caregiver burden and declines in patient physical function. Early evaluation of caregivers’ resilience, their physical and mental health and socio-ecological networks could improve carer and patient health outcomes. Implications for rehabilitation After 3 months of providing informal care to severely injured musculoskeletal trauma patients, there are apparent declines in their mental health, resilience, community support and physical activity levels. However, those with higher levels of resilience compared to lower levels could be protected against caregiver burden. Higher caregiver resilience could also prevent declines in patients’ physical function. The rehabilitation of severe trauma patients should additionally include routine assessment and management of informal caregivers with the aim to prevent caregiver burden. Early clinical assessment of caregiver resilience using a valid resilience measurement tool could identify caregivers at risk of caregiver burden and flag vulnerable caregivers for ongoing support in the community. Early assessment of caregivers’ physical and mental health and health related behaviours could flag the need for health promotion interventions aimed at supporting caregivers’ physical and mental health.

Abstract 442: Caregiver Burden, Stress, Depression, and Quality of Life in Family Caregivers of Patients with Heart Failure

Background: Heart failure (HF) is a chronic disease, which is considered an important strategy to support HF patients for lifetime self-management and monitoring of worsening signs and symptoms of patients at home. However, the necessity of management throughout the whole life demands a great deal of challenge and coping of HF patients as well as their family caregivers. Purpose: We aimed to explore the levels of caregiver burden, stress, depression, and quality of life (QOL) in family caregivers of patients with HF, and to identify the relationships among the variables. Methods: A descriptive and exploratory study design was used. After approval of institutional review board, 64 family caregivers of patients with HF were recruited from a cardiovascular outpatient clinic at a university-affiliated hospital in Korea, between September 2018 and January 2019. We assessed the caregiver burden using Montgomery’s scale, stress by heart rate variability measurement, depression using geriatric depression scale, and QOL using WHO-QOL scale. Results: Participants’ mean age was 52.0 years, and the average length of care was 7.5 years. Most of them were the patient’s wife or child (female), and half of them had their own health problems such as hypertension and back pain. The total mean score of caregiver burden, stress, depression, and QOL of family caregivers were 68.5 (out of 95), 39.8 (out of 100), 8.0 (out of 15), and 93.8 (out of 140), respectively. Their QOL showed negative correlations with caregiver burden and stress, and the levels of caregiver burden and stress increased with HF disease period. Conclusion: Healthcare providers should be aware of the importance of support for family caregivers of patients with HF. It is necessary to develop practical strategies to improve the QOL and to alleviate caregiver burden, stress and depression of family caregivers. And ultimately, it will enable them for positive participation in the comprehensive disease management with patients with HF.

Quality of life in caregivers of patients with multiple myeloma

Objectives: This study aimed to assess the relationship between sociodemographic, clinical, and psychological variables with quality of life (QoL) and the moderating role of caregivers' age and caregiving duration in caregivers of patients with Multiple Myeloma.Method: The sample included 118 caregivers who completed questionnaires that assessed psychological morbidity, satisfaction with social support, coping, burden, unmet needs, and QoL.Results: High psychological morbidity, burden and information, financial and emotional unmet needs were associated with lower QoL, while higher satisfaction with social support and more effective use of coping strategies were associated with better QoL. Women caregivers reported more satisfaction with social support and those who did not choose to care reported greater financial unmet needs and more use of coping strategies. The relationship between caregivers’ psychological morbidity/social support and QoL was mediated by emotional needs and double mediated by coping and burden. The caregivers’ age moderated the relationship between psychological morbidity/social support and emotional needs.Conclusion: Interventions to support the caregiver’s emotional needs to promote their QoL are needed. These should be particularly tailored for older caregivers reporting greater psychological morbidity and younger caregivers less satisfied with their social support, as they have a negative indirect impact on their QoL.

Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to “the stroke outpatient unit of the neurology clinic” of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life. There was a negative and significant correlation between different aspects of quality of life and burden of care. In the bivariate regression model, being married and having lower levels of education (minimum years of schooling) were associated with higher levels of the burden. Our study shows that increasing burden of care in informal home caregivers reduces the quality of life in all domains. Thus, the results of this study indicate that an increase in the burden of caregiving on caregivers lowers their quality of life in all aspects; especially, caregivers who provide care to their spouses encountered more burden. Therefore, these caregivers must be in the center of interest while planning to reduce the burden of care.

Health-related quality of life in caregivers of patients with Alzheimer disease

IntroductionInformal caregivers of patients with Alzheimer disease (AD) have a poor health-related quality of life (HRQOL). HRQOL is an increasingly common user-focused outcome measure. We have evaluated HRQOL longitudinally in caregivers of AD patients at baseline and at 12 months. MethodsNinety-seven patients diagnosed with AD according to the NINCDS-ADRDA (National Institute of Neurological and Communicative Disorders and Stroke, and Alzheimer's Disease and Related Disorders Association) and their 97 respective primary caregivers were included in the study. We analysed the following data at the baseline visit: sociodemographic data of both patients and carers, patients’ clinical variables, and data related to the healthcare provided to patients by carers. HRQOL of caregivers was measured with the SF-36 questionnaire at baseline and 12 months later. ResultsAt 12 months, primary caregivers scored lower in the 8 subscales of the SF-36 questionnaire; differences were statistically significant in all dimensions except for ‘physical function’ and ‘social function’. Baseline scores in our sample were lower than those of the general population. ‘Vitality’ is the dimension that presented the lowest scores. ConclusionHRQOL in caregivers of patients with AD deteriorates over time and is poorer than that of the age- and sex-matched general population.

Perception of quality of life in caregivers of patients with dementia

IntroductionIndividuals with dementia suffer from changes at a cognitive, emotional, and behavioural level. These changes can also affect the quality of life of their caregivers in a physical, psychological, social and spiritual dimension. ObjectiveDetermine the perception of life quality, taking into account the burden of caregivers of patients with dementia. MethodA descriptive, correlational and cross-sectional study was conducted on an intentional sample of 50 caregivers of patients diagnosed with dementia. The information was collected using three tools: socio-demographic variables, quality of life, and dimension of caregiver's burden. ResultsThe sample consisted of 80% women, with an age range of 36–59 years, of whom 54% were married. More than three-quarters (78%) of them had been a caregiver for more than 37 months, and 66% dedicated 24h to the work of caring. The main caregivers experience a low care burden and low effect on their quality of life. ConclusionsThe study shows the presence of women in the role of caregivers, the relationship between the quality life and burden, and how they are influenced by the physical and psychological dimensions. Similarly, a low social well-being negatively influences the quality life.

Development and Validation of a Questionnaire to Measure Quality of Life in Caregivers of Patients with Schizophrenia and Affective Disorders (SAC-QoL)

Background: Severe mental illnesses, such as schizophrenia and affective disorders, have considerable effects on the life of not only patients, but also their caregivers. Objective: The aim of this study was to develop a self-administered quality of life (QoL) questionnaire for the assessment of QoL in caregivers of patients with schizophrenia and affective disorders. Methods: Based on a mixed method approach and purposive sampling method, a sample consisting of 196 caregivers was recruited from 2 psychiatric hospitals in Tehran and Kerman, Iran, as well as a charity center in Kerman during 2015 - 16. A 67-item questionnaire was developed in the qualitative phase of the study, consisting of semi-structured interviews with 45 caregivers, comments of an expert panel, and some items from other relevant questionnaires. The item reduction in the quantitative phase was based on item distribution, missing data per item, inter-item correlation, and factor analysis. The reliability coefficient (Cronbach’s alpha) was calculated for all the dimensions. Convergent validity was assessed by Pearson’s correlation coefficient test, and discriminant validity was analyzed, using student’s t test and analysis of variance (ANOVA). Results: The final version of the questionnaire included 21 items and 7 dimensions: emotional burden (5 items); dealing with patient symptoms (3 items); relationship with the therapeutic team (3 items); relationship with family (2 items); financial burden (3 items); relationship with the extended family and friends (2 items); and latent worry (3 items). The 7 dimensions could explain 78.45% of the total variance. Item internal consistency was satisfactory for all the dimensions, ranging from 0.77 to 0.96 for each item. Cronbach’s alpha coefficient ranged from 0.74 to 0.89 in the whole sample. The SAC-QoL index was significantly correlated with all the dimensions of the world health organization QoL-BREF (WHOQoL-BREF) scale (r, 0.32 - 0.65). Also, the predefined hypotheses confirmed the discriminant validity (P < 0.01). Conclusions: The SAC-QoL questionnaire revealed acceptable psychometric properties. Therefore, it can be considered as a valid and reliable measure of QoL in caregivers of patients with schizophrenia and affective disorders. Moreover, it would be useful for clinicians and authorities to focus on caregivers who are primary providers of healthcare services.

Religion involvement and quality of life in caregivers of patients with schizophrenia in Latin-America

The aim of the study was to explore the relationship between religious involvement (RI) and quality of life (QoL) in caregivers of patients with schizophrenia, while adjusting for key confounding factors such as socio-demographic and clinical characteristics. This study was conducted in the public mental health services in Bolivia, Peru and Chile. The data collected included RI, socio-demographic information, clinical characteristic of the patients and caregiver's QoL using the S-CGQoL questionnaire. A multivariate analysis using multiple linear regressions was performed to determine variables potentially associated with QoL levels. Two hundred and fifty-three patients with their caregivers participated in the study. Caregivers' RI was not significantly associated with overall QoL nor its individual components. The only exception was an unexpected modest inverse association between RI and one QoL dimension (psychological and physical well-being). In contrast, the following caregivers' socio-cultural and economic factors were significantly associated with low QoL level of caregivers: being a mother, identifying with Aymara ethnicity and having lower family income. Among patients, the clinical characteristics of being woman, younger, and having lower age of onset and more severe symptoms was associated with lower QoL. Our study found that socio-cultural, economic and clinical factors were associated with caregivers' QoL.

PM407. Factors of Caregiver Burden and Quality of Life in Caregivers of Patients with Schizophrenia

PM407. Factors of Caregiver Burden and Quality of Life in Caregivers of Patients with Schizophrenia

Evaluation of the Effect of Designated Educational Intervention on the Improvement of Quality of Life in Caregivers of Patients with Chronic Heart Failure

BACKGROUND AND OBJECTIVE: Chronic diseases, such as heart failure, have an adverse impact on the life of the patients and their families. Responsibilities of patient care may give rise to tension and anxiety, affecting the mental and physical health of caregivers. Educational interventions have been shown to enhance the quality of care, as well as the mental and physical health of patient caregivers. This study aimed to evaluate the effects of a designated educational intervention on the improvement of quality of life in caregivers of patients with chronic heart failure (CHF). METHODS: This randomized clinical trial was conducted on 120 family caregivers of CHF patients admitted to the Cardiac Care Unit of Ghaem Hospital of Mashhad, Iran in 2014. Participants were selected via available sampling and randomly allocated to two groups of intervention and control. Designated educational program consisted of face-to-face interviews with the participants in the intervention group, while control subjects only received routine care and training. Data were collected using the Short-Form Health Survey (SF-36) to assess the quality of life in both groups before and one month after the intervention (IRCT: 2014072118552N1). FINDINGS: In this study, no statistically significant difference was observed between the groups in terms of demographic characteristics and eight domains of SF-36 at the beginning of the study. One month after the designated educational intervention, total mean score of quality of life was 81.82±2.75 in the intervention group and 75.97±4.36 in the control group, which had a statistically significant increase compared to before the intervention (p<0.001). CONCLUSION: According to the results of this study, implementation of designated educational programs could improve the quality of life of the caregivers of CHF patients.

Six-session caregiver psychoeducation on bipolar disorder: Does it bring benefits to caregivers?

To evaluate the impact of psychoeducational intervention on the levels of burden, of self-esteem and quality of life in caregivers of patients diagnosed with Bipolar Disorders. In this randomized clinical trial, changes in degree of burden, levels of self-esteem and quality of life were evaluated. Caregivers could participate in the group of psychoeducation (six sessions) or usual treatment (without psychoeducation following a manual). There were no significant differences regarding levels of objective burden between groups. Both groups presented improvement in subjective burden scores throughout the interventions. Objective burden scores showed significant reduction in the usual treatment group (p = .003) and a trend toward decrease in the psychoeducational intervention (p = .081). There are no differences regarding improvement in perceived self-esteem and quality of life when comparing means between the groups with and without intervention. A six-session caregiver psychoeducational intervention on bipolar disorder did not bring benefits to caregiver's health. A longer longitudinal follow-up study would be crucial to see whether there were differences in degree of burden, perceived self-esteem and quality of life over time in caregivers.

G.P.53 - Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

The quality of life (QOL) of children with Duchenne muscular dystrophy (DMD) is still controversial. Some studies have shown that it is reduced among children with DMD. Others have found no differences between the QOL of children with DMD and healthy children. The relationship between functional dependence and quality of life in patients with DMD and between burden and quality of life in caregivers of patients with DMD is not clear in literature. The present study investigated possible relationships between functional dependence and quality of life in patients with Duchenne muscular dystrophy and between quality of life and burden in their caregivers. This study included 35 boys (6–17 yrs) and respective caregivers (above 21 yrs). Caregivers answered to quality of life (World Health Organization Quality of Life) and burden (Zarit Burden Interview) questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations tests and linear regressions were run to investigate the relationships between the variables. The occurrence of lower quality of life and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. Higher burden of caregivers was related to a lower quality of life on caregivers (r = −0.46) and to higher patients' ages (r = −0.73). The present study evidences the occurrence of lower QOL and higher burden in caregivers of patients with DMD. It also clarifies that the origin of the burden is related specifically to the time caring for the children, and it is not correlated to the loss of functional independence of the patients. An intervention based on the whole family and not only on the child with DMD should be considered. Besides, when the child is diagnosed with DMD, the parents should be oriented to share the responsibilities of caring for the child, in order to increase their QOL and reduce their burden.