Life In Caregivers Of Patients Research Articles

Predictors of quality of life in primary caregivers of patients with heart failure: A model of health literacy and caregiving burden

Heart Failure (HF) is a chronic disease that impairs patients' ability to care for themselves. The accumulation of caregiving activities by caregivers to patients creates stress. This study intends to investigate the mediating role of caregiving burden in the relationship between health literacy and quality of life of caregivers. This study is a cross-sectional research conducted through a questionnaire survey. A convenience sampling method was employed to select 410 primary caregivers for the study. The overall mean score for quality of life for caregivers of patients with HF was (49.30±9.64). The results showed that the caregiving burden mediated the relationship between health literacy and quality of life, with the mediating effect accounting for 39.04 % (P < 0.05) of the total effect. Caregiving burden is a mediating variable in the relationship between health literacy and quality of life. Therefore, we offer some recommendations for healthcare professionals: ①We suggest that healthcare professionals provide relevant education and training to caregivers, as this can enhance their knowledge and skills in effectively managing the health condition of patients;②Healthcare professionals can also proactively assess the caregiver's burden level and design personalized support plans based on the assessment results.

Caregiving style and quality of life in caregivers of patients with cardiovascular disease

Objectives Cardiovascular disease (CVD), a leading cause of morbidity and mortality, frequently requires informal caregiving. Spousal caregivers may gain satisfaction while providing care, but there are associated risks, including reduced quality of life (QoL). Caregiving Style (CS; i.e. the ways one responds and is attentive towards their partner’s needs) may help explain why some caregivers experience worse QoL. This study investigated the relationship between CS and QoL among caregivers of patients with a diagnosed cardiac condition. Methods Spousal caregivers recruited from a cardiac rehabilitation program at an academic teaching hospital completed a sociodemographic questionnaire, CS Questionnaire, and QoL Questionnaire for Cardiac Spouses. Multiple regression analyses were conducted, controlling for age, gender, and education. Results The sample consisted of 170 spousal caregivers (M age = 61.8; 74.3% female). The mean of the physical and social functioning scale was 59.4 (SD 10.3) and emotional scale was 71.5 (SD 14.4). Average scores for proximal, sensitive, controlling, and compulsive styles were 4.95, 4.33, 2.82, and 3.22, respectively. Spouses reporting compulsive caregiving (e.g. overprotection, providing intensive care) indicated poor physical/social (β=-0.42, SE=1.02, −7.19, −3.18, p<.001), and emotional functioning (β=-0.41, SE = 1.41, −10.15, −4.60, p<.001). Those reporting sensitive caregiving (i.e. understanding patient needs and feelings) indicated better emotional functioning (β=.19, SE = 1.46, .10, 5.85, p=.04). No other CS was significantly associated with QoL. Conclusions Spousal caregivers engaging in compulsive styles of care may be susceptible to poor QoL, whereas engaging in sensitive styles may promote better QoL. CS may be an important consideration in programming and services designed to support caregivers.

Online mindfulness-based stress reduction improves anxiety and depression status and quality of life in caregivers of patients with severe mental disorders.

To explore the effects of online mindfulness-based stress reduction (MBSR) on the anxiety and depression status, and quality of life in the caregivers of patients with severe mental disorders. Ninety-three caregivers for patients with schizophrenia or bipolar disorder, who were hospitalized in Yunnan Provincial Mental Hospital in March 2021, were enrolled and randomly divided into control group (n=47) and MBSR intervention group (n=46). Both groups received basic health education and rehabilitation skill training, while the intervention group received additional online MBSR for 8 weeks. The anxiety and depression status, and the quality of life of the caregivers were evaluated by Self-rating Anxiety Scale (SAS), Self-rating Depression Scale (SDS) and the 36-item Short Form Health Survey (SF-36) before and 8 weeks after intervention, respectively. Thirteen caregivers dropped out of the study, and 80 subjects (40 in each group) were included in the final analysis. At the baseline, there were no significant differences in SAS, SDS and SF-36 scores between two groups (all P>0.05). Compared with the baseline, SAS and SDS scores in the intervention group significantly decreased after 8 weeks of intervention (both P<0.01) and were significantly lower than those in the control group (both P<0.01). There were no significant changes in the control group (all P>0.05). Except the physiological function dimension, the total score and the scores of each dimension of SF-36 in the intervention group were significantly increased after 8-week intervention (all P<0.05), and were significantly higher than those in the control group (all P<0.01). There were no significant changes in the control group before and after intervention (all P>0.05). Online MBSR can reduce the anxiety and depression levels, improve the quality of life in the caregivers of patients with severe mental disorders.

Stress, Coping, And Quality Of Life In Caregivers Of Patients With Medically Managed Heart Failure, Ventricular Assist Device, Or Cardiac Transplant

Stress, Coping, And Quality Of Life In Caregivers Of Patients With Medically Managed Heart Failure, Ventricular Assist Device, Or Cardiac Transplant

Comprehensive Need as a Mediator Between Psychological Stress and Quality of Life Among Caregivers of Patients With Cancer

Background Caregivers of patients with cancer are susceptible to profound psychological distress and low quality of life owing to the substantial demands of caregiving. The comprehensive needs of caregivers are closely linked to their quality of life. However, little is known about the relationship between these factors. Objective This study aimed to determine whether comprehensive needs mediate the relationships between psychological stress and quality of life in caregivers of patients with cancer. Methods A cross-sectional design was used to recruit 382 participants through convenience sampling. Psychological stress, comprehensive needs, and quality of life were measured using a questionnaire. Results Psychological stress was associated with higher comprehensive needs (r = 0.30, P &lt; .01) and lower quality of life (r = −0.20, P &lt; .01). Comprehensive needs were negatively associated with quality of life (r = −0.28, P &lt; .01). Mediation analysis findings revealed that both the indirect effect of psychological stress on quality of life via comprehensive needs (β = −0.10; P &lt; .001) and its direct effect on quality of life (β = −0.16; P &lt; .01) were statistically significant, suggesting a partial mediatory effect of comprehensive needs between psychological stress and quality of life. Conclusions Our findings suggest that reducing psychological stress can improve quality of life by promoting satisfaction with comprehensive needs. Implications for Practice Interventions that help reduce psychological stress and meet the comprehensive needs of caregivers of patients with cancer can improve their quality of life.

A Biomarker of Stress and Self-reported Caregiving Distress Predict Poor Quality of Life in Family Caregivers of Patients With Heart Failure.

Family caregivers are at a high risk for low quality of life due to caregiving-related stress. Caregivers' stress is commonly assessed using self-reported measures, which reflect relatively subjective and long-term stress related to caregiving, but objective biological markers of stress are rarely used for caregivers. The purposes of this study were (1) to determine whether caregiver characteristics were associated with stress assessed using a stress biomarker (serum cortisol) and a self-reported caregiving distress measure (Caregiver Burden Inventory) and (2) to determine the predictability of both stress measures for quality of life in caregivers of patients with heart failure. Taiwanese family caregivers (N = 113; mean age, 54.5 years; 70.8% female) of patients with heart failure completed surveys including caregiving distress and quality of life measured by the Caregiver Burden Inventory and the Short Form-36 (physical and psychological well-being subscales), respectively, and provided blood samples for serum cortisol. Independent t tests, correlation, and hierarchical regression were conducted. Single caregivers had higher serum cortisol levels than married caregivers (P = .002). Men had significantly higher serum cortisol levels than women (P = .010), but men reported lower caregiving distress than women (P = .049). Both serum cortisol (β = -0.32, P = .012) and caregiving distress (β = -0.29, P = .018) were significant predictors of quality of life in the physical well-being scale while controlling for caregivers' characteristics and depressive symptoms. Serum cortisol (β = -0.28, P = .026) and caregiving distress (β = -0.25, P = .027) also predicted quality of life in the psychological well-being scale. Serum cortisol and self-reported caregiving distress have similar predictability for quality of life in family caregivers of patients with heart failure. Reducing stress and caregiving distress is critical to improving quality of life in this population.

Quality of Life in Caregivers of Patients with Brain Tumours: A Systematic Review and Thematic Analysis

Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support.

Economic Impacts and Quality of Life for Caregivers of Patients with Retinitis Pigmentosa: A Cross-Sectional Japanese Study.

Retinitis pigmentosa (RP) is the second leading cause of visual impairment in Japan and causes progressive vision loss in affected patients. Caregiving for patients with RP is associated with socioeconomic impacts; however, data on the magnitude and scope of these impacts are lacking. This cross-sectional study surveyed informal caregivers of patients with RP in Japan. The questionnaire assessed the socioeconomic status of participants; work impacts through the Work Productivity and Activity Impairment Questionnaire adapted for caregivers; and quality of life impacts through the Japanese version of the Caregiver Reaction Assessment (CRA) and the 5-level EQ-5D version (EQ-5D-5L). Of the 37 participating caregivers, 28 (75.7%) were employed. Among those, the average annual income was 2,722,080 yen (n = 20) and the mean loss of work productivity was 6.6%. The mean EQ-5D-5L index score was 0.882, and the mean CRA total score was 2.1. A mild to very severe impact on family life, leisure and hobbies, social life, and mental health was experienced by 83.8%, 78.4%, 75.7%, and 70.3%, respectively. These results suggest that caregivers of patients with RP may be disadvantaged in terms of employment and income and may experience wide-ranging impacts on their quality of daily life.

Assessment of Burden in Family Caregivers of Chronic Hemodialysis and Peritoneal Dialysis Patients During the Pandemic Period of COVID-19.

In Greece, patients undergoing hemodialysis (HD) usually go to dialysis centers two or three times a week for three/four hours per session because the treatment for home is unavailable; therefore, caregivers should perform supportive transportation and care functions. This study was designed to assess the burden and quality of life in caregivers of patients undergoing hemodialysis and peritoneal dialysis (PD) and to record their attitude toward Coronavirus Disease-2019 (COVID-19). We studied caregivers of patients undergoing hemodialysis and peritoneal dialysis. A total of 80 caregivers took part (30 caregivers of patients of PD and 50 caregivers of patients of HD). The final form of the questionnaire was based on the Quality-of-Life Scale (SF-12) and the Zarit Scale, in order to record the scale of burden and the effect on them throughout the process. The Fear Due to COVID-19 Scale (FCV-19S) contributed to recording the caregivers' fear toward the pandemic of COVID-19. Most of the caregivers were women with an average age of about 60years and 6-10 were the patient's wife or partners. The prevalence of the moderate or severe burden of the patients was found at 18.7%, and the few or no burden at all at 33.8%. The prevalence of fear toward COVID-19 was at very high levels, reaching 82.5% in all caregivers. During the pandemic period of COVID-19, the role of the caregivers of the patients, both who follow the PD method and those who have joined the HD, is particularly important. Their quality of life has been partially affected in all dimensions.

Quality of life for caregivers of patients with mental illness in Qassim region: Cross-sectional study

Quality of life for caregivers of patients with mental illness in Qassim region: Cross-sectional study

Abstract 11202: A Biomarker of Stress and Self-Reported Stress Related to Caregiving Predict Poor Quality of Life in Caregivers of Patients With Heart Failure

Introduction: Caregivers of patients with heart failure (HF) are at high risk of low quality of life due to stress-related to caregiving. Self-reported measures are commonly used to assess relatively long-term stress related to caregiving. Still, biological markers of stress, a short-term stress measure, are rarely used. There is limited knowledge on whether both can predict the quality of life in caregivers of patients with HF. Hypothesis: The stress biomarker (serum cortisol) and subjective distress related to caregiving (Caregiver Burden Inventory) predict the quality of life in caregivers of patients with HF. Methods: In this cross-sectional study, Taiwanese caregivers of patients with HF completed surveys including stress-related caregiving and quality of life measured by the Caregiving Burden Inventory and the Short Form-36, respectively. A blood sample for serum cortisol was collected between 9 and 12 AM. Independent t-test and multivariable linear regression analysis were conducted adjusting for age, gender, education, marital status, relationship with care-recipient and depressive symptoms (Patient Health Questionnaire). Results: Of the 113 caregivers (mean age 54.5 years, 70.8% female, 78% married/cohabitated), 59% cared for patients with NYHA class III/V. Single caregivers had higher serum cortisol levels than married caregivers (11.4 vs. 8.5, p =.002). Males had a significantly higher serum cortisol level than females (10.7 vs. 8.5, p =.010), but males reported a lower caregiver burden than females (1.3 vs. 1.6, p =.049). Both serum cortisol (β =-.36, P=.012) and caregiver burden (β = -.29, P= .018) were significant predictors of physical well-being. Serum cortisol (β= -.28, p=.026) and caregiver burden (β =-.25, p =.027) also significantly predicted mental well-being. Conclusions: Although stress levels are different by caregivers’ characteristics, both cortisol level and self-report caregiver burden have similar predictability of quality of life in caregivers of patients with HF. Reducing stress and caregiver burden is necessary to improve the quality of life in this population.

Predictors of quality of life in caregivers of patients with chronic disease

Objetivo: establecer la asociación entre la calidad de vida del cuidador familiar y los predictores del perfil del cuidador y el paciente, la sobrecarga del cuidado y la adopción del rol en una población colombiana. Metodología: estudio descriptivo transversal realizado con 489 cuidadores familiares de pacientes con enfermedad crónica en Medellín, Colombia. Se aplicaron los instrumentos: Ficha de caracterización sociodemográfica, Perfil Pulses, Escala de Adopción del Rol del Cuidador, Entrevista de sobrecarga Zarit, Escala de calidad de vida WHOQOL-BREF. El establecimiento de las variables predictoras se realizó por medio de un modelo de regresión lineal múltiple. Resultados: los participantes fueron en su mayoría mujeres (92 %) con una media de edad de 54 años. Se encontró que la escolaridad del paciente (β = 1,805), el apoyo social percibido (β = 0,939), el compromiso religioso (β = 1,87), la dependencia del paciente (β = -0,29), la sobrecarga (β = -0,175) y las dimensiones respuesta ante el rol (β = -0,714), organización del rol (β = 0,769) y labores del rol (β = 0,364) son predictores significativos de la calidad de vida del cuidador familiar. Conclusión: la calidad de vida del cuidador de la persona con enfermedad crónica está influenciada por características del paciente como su escolaridad y grado de dependencia, y por otras condiciones de cuidado como el apoyo social percibido, el compromiso religioso, la sobrecarga y la adopción del rol del cuidador.

A Study on assessment of the severity and the prevalence of Anxiety, Depression and Quality of Life in caregivers of patients with cancer.

Background: Caregivers plays a role in caring of the cancer patients. They may experience psychological problems such as depression, anxiety which in turn results in decrease in the quality of life. Such people cannot effectively fulfill their role as a caregiver which in turn affects the overall treatment outcome of cancer patients. Aims: The study was done for the purpose of assessesment of the depression and anxiety prevalence in caregivers and to determine the quality of the life in caregivers. Methodology: It was a cross sectional study conducted in caregivers of cancer patients. A total of 100 subjects were recruited in to the study. They were administered with socio-demographic proforma, MINI neuropsychiatric interview to detect the presence of depression and anxiety. Montgomery asberg depression rating scale to assess the severity of depression, Hamilton anxiety rating scale to assess the severity of anxiety and the caregiver quality of life index –cancer for the assessment of the quality of life in the subjects. Data analysis was done with appropriate tests. Results: The study subjects showed that the majority of the caregivers had severe depression (41%), followed by moderate depression in 34% and mild depression in 25% of the subjects. The anxiety rating scale showed that 69%of subjects had severe anxiety, followed mild anxiety (18%) and moderate anxiety in 13% of the subjects. High scores on depression and anxiety rating scales decreases the scores on the caregiver quality of life scale. Conclusions: Majority of the study subjects showed higher rates of anxiety, depression and decreased quality of life.

Impact of the COVID‐19 pandemic on the caregiver burden and quality of life in caregivers of patients with dementia

BackgroundFamily caregivers of dementia patient are at higher risk for perceived burden of caregiving and stress from COVID‐19 than general population. The current study examines the current status COVID‐19‐specific stress, anxiety, burden of caregiving and health related‐ quality of life that may be significantly deteriorated for family caregivers in understanding cargiver burden and their stress experienced due to the COVID‐19 pandemic.MethodAbout two hundred family caregivers aged 20‐79 years in the South Korea will be recruited to collect the data on their stress, anxiety related to ongoing COVID‐19, burden of caregiving, and health‐related Quality of life in an online or telephone survey.ResultThe present study will show that the current status of perceived stress, anxiety, burden of cargiving of person with dementia associated with COVID‐19 pandemic. The increased stress, anixety, and burden of cargiving could negatively affect their health‐related quality of life. The specific study findings will be demonstrated in poster presentation of the conference.ConclusionThe present study will be demonstrated that the association between COVID‐19‐specific stress, burden of caregiving, and health related quality of life for family caregivers of dementia patient. This study findings will encourage future development of public interventions to address burden of caregiving in family caregivers with COVID‐19 pandemic.

Quality of Life in Family Caregivers of Patients with Schizophrenia: A Narrative Review

Abstract: Care for schizophrenia patients over the past few decades has shifted from inpatient treatment in mental institutions towards outpatient treatment options. While this has the potential to allow patients a more regular life with the ability to work and socialize, it has increased the burden on family caregivers. This state-of-the-art narrative review summarizes the most important factors, besides the clinical symptoms of schizophrenia, that impact the quality of life of caregivers negatively. These factors include the impact of the disease on household income and socioeconomic status, anxiety, stigma, negative changes in family dynamics as well as an overall reduction of social and family contacts.

English

BACKGROUND Caregivers play a significant role in psychosocial management of mentally ill patients, as a result of an increasing shift of psychiatric care to the community. Nowadays, caregiver’s role becomes vital as psychiatric patients are receiving relatively short inpatient care, and early discharge from hospital. Caregivers of patients with major psychiatric disorders have diminished quality of life as these disorders are long-lasting. The purpose of this study was to compare the quality of life in caregivers of patients with schizophrenia and mood disorder METHODS This is a cross-sectional study. Sample consists of 60 caregivers of patients with schizophrenia and mood disorder, who are attending a government hospital for mental care. Data was collected and quality of life was assessed using world health organisation QOL - BREF (WHOQOL - BREF) questionnaire. Mean quality of life score of caregivers of patients with schizophrenia and mood disorder was compared. Higher the score, better the quality of life. RESULTS Sample consists of 34 females and 26 males. Mean quality of life score of caregivers of patients with schizophrenia and mood disorder was 79.3 and 82.3, respectively. There is a significant difference between the mean quality of life score of caregivers of schizophrenia and mood disorder group with a P - value 0.013 (&lt; 0.05). Quality of life is better in caregivers of patients with mood disorder compared to schizophrenia, maybe due to the nature of the illness, i.e. continuous in schizophrenia and episodic type in mood disorder. CONCLUSIONS Measuring quality of life among caregivers can help initiate early intervention among vulnerable caregivers. By providing better health services and psychoeducation, caregivers quality of life can be improved, which improves the level of caregiving and also helps in enhancing the quality of life in mentally ill patients. KEYWORDS Caregivers, Quality of Life, Schizophrenia, Mood Disorder

Burden, quality of life and coping strategies of palliative care patients’ caregivers

Aim: The burden of the caregiver can affect the caregiver socially, psychologically and physically in time. Since becoming a caregiver is always an unpredictable situation adaptation to this situation takes place after the situation arises. The aim of this study is to examine the attitudes of coping with caregiver burden and quality of life in caregivers of patients hospitalized in palliative care units.&#x0D; Materials and Methods: The study was carried out with caregivers of 59 hospitalized patients in the palliative care unit of a university hospital. The Zarit caregiver burden scale was used to determine the caregiver burden, the SF 36 to determine the quality of life, and the COPE self-report scales to reveal the coping attitudes.&#x0D; Results: The mean score of Zarit caregiver burden scale in caregivers was 50.7 and was interpreted as a moderate burden. The highest score among the COPE subscale scores was COPE 7 (religious coping) (15.7); the lowest score is COPE 12 (4.4) (Substance use). A significant negative correlation is found between the Zarit caregiver burden scale and the education level of the caregiver (R = -0.291, p = 0.025).&#x0D; Conclusion: Caregiver burden is the totality of possible physical, psychological, social or financial responses while providing care. In our country, mostly women, unemployed and low-educated family members become caregiving. In our study, the participants defined a moderate burden, although they provided care to chronic and severe patients. This indicates that in addition to the treatment of patients in palliative care centers, caregivers are also provided with medical, social and psychological support.

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.