Caregiver Quality Of Life Research Articles

The Quality of Life of Caregivers of People with Type 2 Diabetes Estimated Using the WHOQOL-BREF Questionnaire

Type 2 diabetes (T2D) poses a growing global health challenge, impacting patients’ and their caregivers’ well-being. This study investigates the influence of T2D complications on caregivers’ quality of life (QoL) using the WHOQOL-BREF questionnaire, accounting for factors like age, disease duration, and control. The research involved 382 T2D patients and 300 caregivers from Vuk Vrhovac University Clinic for Diabetes, Endocrinology, and Metabolic Diseases. The WHOQOL-BREF questionnaire assessed caregivers’ QoL across physical, psychological, social, and environmental domains. Complications, including retinopathy, neuropathy, and kidney disease, were examined for their effects on QoL. Patients’ age impact, gender differences, and disease duration were analyzed. T2D complications had varying impacts on different QoL domains. Caregivers of patients with multiple complications showed significant social functioning impairment. Those without complications reported lower psychological health. Age correlated with poorer physical health scores. Female caregivers rated higher in psychological and environmental health. Disease duration and T2D control had no significant impact on caregiver QoL. Caregivers’ concerns included medication adherence and worry about their partner’s health. This study illustrates the delicate interplay between T2D patients and caregivers, highlighting the multifaceted effects of chronic illness. Comprehensive healthcare techniques that address emotional and social components in addition to medical care are critical for improving the well-being of both patients and their caregivers. The findings contribute to a broader understanding of T2D care dynamics, advocating for empathetic and all-encompassing healthcare practices.

Quality of Life of Patients With Chronic Kidney Disease Under Maintenance Hemodialysis and Their Caregivers: A Cross-Sectional Study.

Maintenance hemodialysis (MHD) prolongs the life of patients with end-stage chronic kidney disease (CKD), but this process can change their lifestyle, affecting their quality of life (QoL). Patients with MHD require their caregivers' assistance in daily management and repeated hospital visitation. This places a burden on caregivers affecting their QoL. Both patient and caregiver form a unit during the caregiving process. This study aims to compare and correlate the QoL of patients with CKD under MHD with their caregivers, considering their common familial and socioeconomic backgrounds. This is a cross-sectional, comparative study in the Hemodialysis Unit of Patan Academy of Health Sciences (PAHS), Lalitpur, Nepal. Patients aged >14 years with CKD under MHD and caregivers staying with the patient at their resident place for a minimum of two months were included in the study. QoL of patients with CKD under MHD was compared with caregivers under different domains of the physical component summary (PCS) and mental component summary (MCS) scores using an SF-36 (Short form-36) health survey questionnaire. Data was collected and entered in Microsoft Excel 2010/Epi info version 7.2 and analyzed. The overall QoL of caregivers was better than CKD patients under MHD in terms of both PCS score(48.13 vs. 35.36) and MCS score (48.11 vs. 43.25) and was statistically significant (p-value: <0.001) in both scores. The patient's QoL was not significantly correlated with the caregiver's PCS score (p-value: 0.635). Still, there was a significant correlation between QoL and MCS scores (p-value: 0.006). Similarly, caregivers had better QoL than CKD patients under MHD under all eight domains, which was statistically significant. No significant correlation was found between the frequency and duration of MHD with PCS and MCS scores of both patient and caregiver. Overall, the physical and mental QoL of the caregiver was better than CKD patients under MHD. Further studies need to be conducted to assess the QoL of both groups compared to the healthy population to address the issue of hemodialysis patients and their caregivers.

Effect of Psychosocial Interventions on Cancer's Caregiver Quality of Life: Meta-analysis.

People living with cancer benefit greatly from informal caregivers. No previous meta-analysis was done to check the effect of psychological intervention on cancer caregiver's quality of life. The goal of this meta-analysis was to check the effect of psychosocial interventions on Cancer's Caregiver quality of life and check the impact of various psychological intervention programs. A comprehensive literature search was conducted from January 2006 to April 2021 using PubMed, PubMed Central, Clinical Key, CINAHL Database, EBSCO, Google Scholar and Cochrane database. The effect of psychological intervention programs on caregiver's quality of life was evaluated using a mean difference between experimental and control groups. A random-effects model was used to measure the mean difference (MD) for calculating the cancer caregiver's quality of life. The final report comprised eight trials with a total of 1142 participants. The caregiver intervention programme was found to improve cancer caregivers' quality of life, but not statistically significantly (mean difference=0.10; p<0.00001). According to this meta-analysis, The psychological intervention program positively affected cancer caregiver's quality of life. Further randomised controlled trials are required to prove that psychological interventional programs are successful strategies for improving cancer caregiver's quality of life.

Unexpected changes and associated factors of care burden among caregivers of cancer patients one year after COVID-19 outbreak

PurposeThe study aimed to evaluate the changes in the care burden and quality of life of caregivers of cancer patients and correlates of care burden during the COVID-19 pandemic. MethodsThis cross-sectional study used the census sampling technique with 260 cancer patients and their caregivers during January to March 2020 in northeast Iran. Data collection tools included the Novak and Guest Care Burden Scale, the SF-36 Quality of Life Questionnaire, and the Stress, Anxiety, and Depression Scale (DASS-21). Data were analyzed using descriptive and inferential statistics (independent t-test and multiple linear regression analysis). ResultsBaseline scores of care burden and quality of life in caregivers suggested mild to moderate care burden and a reasonable quality of life and moderate levels of stress, anxiety, and depression in patients. The post-outbreak mean scores of care burden and quality of life significantly decreased and increased, respectively (p < .001). Regression analysis showed that 39.3% of the changes in the care burden score during the pandemic could be predicted by studied variables. In exchange for increasing the quality-of-life score and daily care hours, the care burden score decreases and increases. The burden of care in caregivers was also related to the type of cancer. Care burden in the caregivers of patients with breast and neurological malignancies was lower than the caregivers of patients with gastrointestinal cancer (p < .05). ConclusionDespite the results obtained, supportive and educational interventions are needed to reduce the caregiver burden and improve the quality of life of caregivers and measure its impact on levels of psychological distress in their patients clinically.

Quality of Life Among Caregivers of Children with Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: A Cross Sectional Study.

Caregivers of children with attention deficit-hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) experience more stress than caregivers of typically developing children but there is limited research evaluating caregivers' quality of life (QoL). This study aimed to describe the association of caregiver QoL in children with ASD and/or ADHD. This study included patients with ADHD and/or ASD seen in one pediatric specialty clinic between September 2018-August 2020. Caregivers were classified as those caring for children with ASD-only, ADHD-only, or youth with both conditions (ADHD + ASD). An adapted version of the PedsQL Family Impact Module was used to measure caregiver QoL. The sample included caregivers of 931 children. The majority of these children were male (74.7%), non-Hispanic white (63.3%), and aged 6 to 12 years (57.8%). Across the groups, significant differences were observed in patient age (p < 0.0001), preferred language (p = 0.005), and insurance (p = 0.001). Caregivers of non-Hispanic Black children had 4-times the odds of reporting feeling isolated from others (OR 4.36, 95% CI 1.19-16.00 p = 0.03). Those caring for children with ADHD-only had significantly lower odds of reporting helplessness or hopelessness (OR 0.45, 95% CI 0.26-0.80, p = 0.004), and difficulty talking about their child's health with others (OR 0.30, 95% CI 0.17-0.54, p < 0.0001). Similarly, caregivers of children who had ADHD + ASD reported higher odds of difficulty making decisions together as a family (OR 14.18, 95% CI 1.15-17.91, p=0.04) and difficulty solving family problems together (OR 45.12, 95% CI 2.70-752.87), p = 0.008). Caring for children with ADHD and/or ASD may affect caregiver QoL.

Enhancing resilient coping strategies for quality of life in Chinese adult children caregiving for parents with advanced cancer: a cross-sectional study

PurposeThis study investigated the mediating role of individual resilience in the relationship between caregiver burden and quality of life (QoL) among Chinese adult children providing care to their parents with advanced cancer, with the aim to inform effective coping strategies and positive caregiving outcomes.MethodsIn a cross-sectional design, 614 caregivers from multiple centers, whose parents were undergoing chemotherapy and/or radiotherapy, completed questionnaires encompassing demographics, caregiver burden, symptoms of anxiety and depression, resilience, and QoL.ResultsFindings revealed a moderate level of caregiver burden among participants, significantly influenced by factors including education level, family income, single-child status, and participation in social media patient support groups. Caregivers who were only children or involved in patient support groups reported higher burden. Importantly, path analysis showed a significant impact of caregiver burden, anxiety, and depression on QoL, with these relationships being mediated by individual resilience.ConclusionsChinese adult child caregivers face a considerable burden, negatively influencing their QoL. Individual resilience, a modifiable factor, was identified as a critical mediator in this relationship, mitigating the negative implications of caregiver burden, anxiety, and depression. These findings underscore the need for caregiver interventions that consider not only demographics but also the socio-psychological dynamics of caregiving to enhance caregiver QoL.

Caregiver's quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care.

Early palliative care (EPC) improves the quality of life (QoL) of advanced cancer patients and their caregivers. The increasingly widespread use of this care model requires the development of measures supporting its interventions. Although the construct of patient's QoL has been extensively investigated and several QoL measures have been further validated, there is a paucity of data concerning the QoL of the caregiver. In 2018, McDonald and colleagues addressed this issue by interviewing 23 primary caregivers of advanced cancer patients who participated in an EPC randomized clinical trial to understand their perspective on the QoL construct. The Authors identified six major dimensions associated with the construct of caregiver's QoL. The present retrospective study aimed to validate these dimensions on a larger sample and in a real-life EPC setting. Previously collected reports from 137 primary caregivers of advanced cancer patients on EPC answering questions about their experience with this care model were qualitatively analyzed through a deductive, thematic approach to identify and confirm the six dimensions constituting the construct of interest based on McDonald's and colleagues' results. The six dimensions ("living in the patient's world", "burden of illness and caregiving", "assuming the caregiver role", "renegotiating relationships", "confronting mortality", and "maintaining resilience") were consistently found in the reports from primary caregivers in a real-life EPC setting, confirming to be significant themes associated to their QoL. A definite and recurrent construct of primary caregiver's QoL as described by McDonald and colleagues was also found in a larger sample and in a real-life EPC setting. Thus it may lay the groundwork for the development of a dedicated questionnaire.

Epilepsy Impacts Families and Communities: Persistent Gaps and Inequities

Adam P. Ostendorf , Satyanarayana Gedela Seminars in Pediatric Neurology Volume 24, Issue 4, November 2017, Pages 340-347 The effect of epilepsy extends beyond those with the diagnosis and impacts families, communities and society. Caregiver and sibling quality of life is often negatively affected by frequent seizures, comorbid behavioral and sleep disorders and stigma surrounding the diagnosis. Furthermore, the negative effects can be magnified by individual coping styles and resources available to families of those with epilepsy. Beyond the family and immediate caregivers, epilepsy affects local communities by drawing additional resources from education systems. The direct costs of caring for an individual with epilepsy and the indirect costs associated with decreased productivity place financial strain on individuals and health care systems throughout the world. This review details factors affecting family and caregiver quality of life and provides several approaches through which health care providers may address these concerns. Furthermore, we examine the financial effect of epilepsy on society and review emerging strategies to lessen health care use for individuals with epilepsy.

Level of knowledge and quality of life among Saudi caregivers of Parkinson’s disease patients: A study from a tertiary hospital in Riyadh, Saudi Arabia

PurposeWe aimed to assess the family caregivers’ level of knowledge and attitudes about Parkison’s disease (PD), identify factors affecting their knowledge, evaluate their quality of life (QoL) and factors influencing it and to define the effect of PD on activities of daily living (ADLs) of PD patients. MethodWe developed and validated a questionnaire to assess the level of knowledge and attitudes of family caregivers toward PD, effects of PD on caregivers’ QoL as well as its effects on activities of daily living (ADLs) of patients from the caregivers’ perspective. A scoring system was utilized and SPSS was used to evaluate the differences in responses between the groups; p < 0.05 indicated statistical significance. Results69 caregivers and their corresponding patients were included in the study. Family caregivers had a low level of knowledge, as reflected by a mean score of 3.45 out of 8. However, 62.3% were aware of all medications used by their patients. Additionally, the level of knowledge was associated with caregivers’ gender as 57.1% of the female caregivers had medium PD knowledge scores while 58.5% of the male had low scores (p = 0.038). The level of knowledge was also associated with daily caregiving hours as only 44.5% of caregivers whom spending 0–5 h/day had medium and high knowledge scores while greater proportions with same scoring levels were found among those providing care > 5 h/day (75.0% in > 5–10 hrs; 52.4% in > 10–24 hrs; p = 0.024). Most caregivers confirmed their QoL had declined, yet the male caregivers had better QoL than females (p = 0.026). Longer caregiving time was associated with decline (p = 0.016) and severe effect on QoL of caregivers (p = 0.04). ConclusionCaregivers of PD patients had a low level of knowledge. Female caregivers had significantly higher level of PD knowledge than their male counterparts. Low level of PD knowledge was significantly associated with shorter caregiving time per day. Longer caregiving time was significantly associated with a decline in caregivers’ QoL. Increasing awareness and knowledge among caregivers is necessary to ensure better treatment outcomes and improve the QoL of both caregivers and patients.

Effect of empowerment program on the quality of life of the elderly cancer patients’ caregiver: A quasi-experimental study

Cancer patients and their family face challenges in their quality of life (QoL). Families have an important role in health care programs for their patients. This study evaluates the family-centered trainings on the QoL of the family caregivers of elderly cancer patients. This quasi-experimental study was conducted in 30 caregivers of elderly cancer patients who randomly divided into control and experiment groups (n=15 per group). Data was collected using a demographic and the Caregiver Quality of Life Index-Cancer (CQOLC) scale. The intervention was carried out as an individual education in two one-hour sessions. Six weeks after the intervention, the quality of life (QoL) was remeasured in the groups. ANCOVA and Bonferroni tests showed a statistically significant difference in the mean score of the QOL between the experiment (60.53±15.99) and the control groups (68.07±18.49) in the post-test (P &lt;0.001). The family-centered intervention is beneficial in enhancing the QoL of caregivers of the elderly cancer patients. Consequently, providing educational programs can be an effective method and essential for improving the clients’ QoL.

Quality of Life and Needs in Caregivers: Results From the Prospective Multicentric Open-Label Randomized Study of Informal Caregivers of Elderly Patients.

Objectives: To assess health-related quality of life (QoL) in caregivers of elderly patients with chronic disabilities receiving, or not receiving, social worker support. Methods: This multicenter open-label randomized study assigned caregivers to receive an information booklet, exclusively, or with social worker support. Caregivers completed Short Form-36 (SF-36) and Hospital Anxiety Depression Scale quarterly, and Zarit Burden Interview each semester, for 24months. We reported caregiver QoL mean changes at 12 and 24months (M12, M24). Longitudinal QoL analysis up to M24 used mixed models for repeated measures (MMRM). Results: Among the 179 caregivers randomized from 2015 to 2019, the SF-36 physical and mental component summary showed no significant changes at M12 and M24, in terms of neither anxiety nor burden. However, depression significantly increased (M12: 1.4 ± 4.0; M24: 1.7 ± 4.1) with significant adjusted mean increase using MMRM at M24: 3.4 [0.6-2.5] in the control group, exclusively. Conclusion: These findings call for better recognition of the social support to prevent caregiver QoL deterioration and alleviate their depression early in the course of the disease. Clinical Trial Registration: ClinicalTrials.gov, identifier NCT02626377.

Stasis dermatitis: A challenging patient journey

AbstractStasis dermatitis (SD) is a chronic inflammatory dermatosis that typically presents with nonspecific signs and symptoms such as pruritic and xerotic skin, aching legs, and areas of dyspigmentation (red or brown in lighter skin tones and brown, purple, gray, or ashen in darker skin tones). These signs and symptoms are often misdiagnosed as other conditions, such as cellulitis. Moreover, within healthcare systems, SD is often overlooked due to a lack of understanding of the magnitude and impact of the condition, as well as incomplete recognition of the various presenting clinical manifestations. Inadequate or inappropriate management may lead to disease progression, including worsening edema, pain, and itch as well as complications such as venous leg ulcers. When patients do seek medical attention (often upon worsening of the condition), a diagnosis of SD is often challenging because of physician lack of expertise and the plethora of disorders that may manifest similarly to SD. Furthermore, upon diagnosis, evidence‐based treatment options are limited, and adherence to SD treatment regimens is often low. SD significantly impacts patient and caregiver quality of life (QoL), with far‐reaching psychosocial and socioeconomic effects. In this review, we describe the patient journey associated with SD and the challenges associated with diagnosis, the burden of disease and impact on patient QoL, and the unmet needs that remain with current therapeutic options.

Using Mindfulness to Improve Quality of Life in Caregivers of Individuals with Intellectual Disabilities and Autism Spectrum Disorder: Agency Outcomes for Caregivers and Clients

ObjectivesResearch suggests that the quality of life of professional caregivers of individuals with intellectual disabilities and autism spectrum disorder can be enhanced through mindfulness-based training. The effects of such training have been evidenced in terms of perceived psychological stress, compassion satisfaction, compassion fatigue (i.e., burnout, secondary traumatic stress), and symptoms of depression. In addition to changes in caregiver personal outcomes, mindfulness-based training may have effects on the quality assurance variables of the agency that employs these caregivers. The aim of the present study was to examine the changes from a systems perspective in terms of quality assurance variables related to caregivers and clients in community-based group homes.MethodsProfessional caregivers (n = 216) were randomized into three experimental conditions based on the training they received: mindfulness, psychoeducation, or inservice training-as-usual (control). The effects of the training were assessed in terms of quality assurance indices pertaining to caregivers (progressive discipline, call-ins, days absent, medical referrals, hospitalizations, and caregiver turnover) and clients (learning objectives, behavioral episodes, use of physical restraints, emergency medications [stat], medical emergencies, hospitalizations, aggression to staff, aggression to peers, and level of supervision).ResultsOverall, caregivers in the mindfulness group exhibited significantly fewer progressive discipline and call-ins when compared to the psychoeducation and control groups. Caregivers in both the mindfulness and psychoeducation groups exhibited significantly fewer days of absence from work, medical referrals, and caregiver turnover when compared to the control group. There was no difference across the three groups in terms of hospitalizations. Clients under the care of mindfulness-trained caregivers showed significantly greater improvement in completing learning objectives, fewer behavioral episodes, reduced need for physical restraints and stat medication for behavioral episodes, fewer episodes of aggression to peers, and lower levels of supervision when compared to those in the psychoeducation and control groups. Clients did equally well in terms of medical emergencies, hospitalizations, and aggression to staff in the mindfulness and psychoeducation groups when compared to those in the control group.ConclusionsDifferential effects of mindfulness training, psychoeducation, and inservice training-as-usual were evident in quality assurance variables related to caregivers and clients. The results suggest that training caregivers in different approaches to self-care may differentially affect not only their clinical status but also at a systems level in terms of quality assurance indices.

Caregiver Quality of Life: Satisfaction and Burnout.

Informal caregivers (ICs) of cancer patients play a crucial role in health care. Several of the challenges they face can affect their quality of life (QoL). This cross-sectional study explored role of burnout and caregiving satisfaction in their relationship to QoL. Portuguese ICs of adult cancer patients (N = 92) answered a sociodemographic and caregiving questionnaire, the WHOQOL-SRPB BREF, assessing physical, psychological, social, environmental, and spiritual QoL domains; the Maslach Burnout Interview, assessing the dimensions of depersonalization, emotional exhaustion, and personal accomplishment; and a Visual Analogic Scale on caregiving satisfaction. We tested correlations and a parallel mediation model for each domain of QoL, considering burnout dimensions as possible mediators between satisfaction and QoL domains. Our results show that satisfaction, burnout dimensions, and almost all QoL domains are correlated. Together, burnout dimensions seem to mediate the relationship between caregiving satisfaction and psychological, environmental, and spiritual QoL. Satisfaction had a significant indirect effect solely through emotional exhaustion on psychological QoL (β = 1.615, 95% BCI [0.590; 2.849]), environmental QoL (β = 0.904, 95% BCI [0.164; 1.876]), and spiritual QoL (β = 0.816, 95% BCI [0.019; 1.792]). It seems essential for mental health professionals to address these dimensions when providing support to an IC.

Factors related to the quality of life of family cancer caregivers.

Cancer caregivers directly affect patient health outcomes. To maintain the function and health of caregivers so that patients can receive efficient care, we must pay more attention to caregivers' quality of life in the process of caring for patients. However, the factors influencing caregivers' quality of life are complex. To assess caregivers' quality of life in the process of caring for cancer patients and to explore the factors associated with it. This was a descriptive correlational study. A self-report questionnaire was used to anonymously collect data from one Chinese cancer hospital. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp-12), General Self-efficacy Scale (GSES), Positive and Negative Affect Schedule (PANAS), Connor-Davidson Resilience Scale 10 (CD-RISC-10), 24-item Caregiver Burden Inventory (CBI) and Caregiver Evaluation Questionnaire were used to measure caregivers' spiritual well-being, self-efficacy, affective well-being, resilience, caregiver burden and quality of life. One-way analysis of variance, the Kruskal-Wallis H test and multiple regression analysis were applied to measure the factors influencing caregivers' situations. A total of 315 caregivers of cancer patients were selected by convenience sampling. All participants were invited to complete the questionnaire through a one-on-one approach. The mean score for caregiver quality of life was 204.62 ± 36.61. After controlling for demographic factors, self-efficacy (β' = 0.265, p < 0.01), resilience (β' = 0.287, p < 0.01) and positive affect (β' = 0.103, p < 0.01) were protective factors for caregivers' quality of life. Negative affect (β' = -0.217, p < 0.01) and caregiver burden (β' = -0.219, p < 0.01) were negative factors. Notably, not all of these predictors can predict all dimensions of quality of life. Caregivers' quality of life needs to be further improved. The results of this study may provide clues to help identify factors influencing caregivers' quality of life and implement targeted strategies to improve their quality of life.

Depressive Symptoms in Caregivers of Hospice Cancer Patients.

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

A cross-sectional study exploring the positive aspects of caregiving in opioid dependence and its relation with quality of life, social support, and caregivers' burden.

Despite a large body of research linking caregiver burden and social support in substance dependence, positive aspects of caregiving in these disorders have received very minimal attention. This exploratory observational study aimed to assess the positive aspects of caregiving for opioid dependence and evaluate the association of these positive aspects with caregiver quality of life, burden, and social support. This cross-sectional study included 199 caregivers of patients with opioid dependence recruited through purposive sampling. Participants were assessed using the Scale for Positive Aspects of Caregiving Experience (SPACE), World Health Organization Quality of Life-BREF version, Family Burden Interview Schedule (FBIS), and Social Support Questionnaire. Of the 199 caregivers recruited, a majority of the caregivers were middle-aged women. About two-thirds of the patients were currently using opioids (n = 135, 67.8%), while the remaining were abstinent. Among the SPACE domain scores, the mean was highest for motivation for the caregiving role (2.07), which was followed by self-esteem and social aspect of caring (2.04), caregiving personal gains (1.76), and caregiver satisfaction (1.65). Caregivers of patients currently abstinent experienced greater positive aspects of caregiving (SPACE mean item score 2.57 versus 1.62, P < 0.001), and lesser burden (FBIS mean score 13.4 versus 29.3, P < 0.001). Positive aspects of caregiving can be potentially utilized for better caregiver engagement in treatment and improved caregiver outcomes.

Quality of life and caregiver burden in caregivers with patients with complications from type 2 diabetes mellitus

Chronic diseases with partial dependence, including type 2 diabetes mellitus, modify the way of life of the patient and his family, who adopt the role of caregiver having to reorganize, rethink their expectations and adapt their goals and objectives to the situation, this may generate a deterioration of the quality of life and an overload syndrome. To identify the relationship between quality of life and caregiver overload in caregivers with patients with complications from type 2 diabetes mellitus assigned to the Family Medicine Unit No. 7. Cross-sectional study, carried out with 138 caregivers with a patient with complications from type 2 diabetes mellitus. The sociodemographic profile instruments, the SF-36 health questionnaire, and the Zarit scale were used for data collection. The analysis was carried out through descriptive statistics and Spearman's correlation test, with a significance level of p≤0.05. It was identified that the health-related quality of life in caregivers with patients with complications from type 2 diabetes mellitus evaluated with the SF-36 questionnaire had a mean value of 74.8; with a score in the physical and mental components of 63.9 and 38.1 respectively. The best qualified dimensions were social function (84.9) and physical function, on the other hand, vitality obtained a lower qualification. It was observed that 5.05% of the caregivers present light overload and 5.05% intense overload. When performing the correlation between the global rating of the Zarit scale with the 8 dimensions of the SF-36 health questionnaire in caregivers of patients with complications of type 2 diabetes mellitus, a moderate negative correlation was observed between the dimensions of mental health, physical function, emotional role and vitality, as well as a weak negative correlation between the dimensions of social role and physical role. The results show an inverse correlation between the caregiver's burden and the quality-of-life dimensions, that is, if one decreases, the other increases; It is important to carry out health promotion activities in this population to prevent caregiver overload.

Treatment preference and quality of life impact: ravulizumab vs eculizumab for atypical hemolytic uremic syndrome.

Aim: Ravulizumab and eculizumab are complement C5 inhibitors approved for the treatment of atypical hemolytic uremic syndrome (aHUS). Ravulizumab requires less frequent infusions than eculizumab, which may reduce treatment burden. This study investigated patients' treatment preferences and the impact of both treatments on patient and caregiver quality of life. Materials & methods: Two surveys were conducted (one for adult patients with aHUS and one for caregivers of pediatric patients with aHUS) to quantitatively assess treatment preference and the patient- and caregiver-reported impact of ravulizumab and eculizumab on quality of life. Patients were required to have a diagnosis of aHUS, to be currently receiving treatment with ravulizumab and to have received prior treatment with eculizumab. Participants were recruited via various sources: the Alexion OneSource™ patient support program, the Rare Patient Voice recruitment agency, the aHUS Foundation and directly via a clinician involved in the study. Results: In total, 50 adult patients (mean age: 46.5years) and 16 caregivers of pediatric patients (mean age: 10.1years) completed the surveys. Most adult patients (94.0%) and all caregivers reported an overall preference for ravulizumab over eculizumab; infusion frequency was one of the main factors for patients when selecting their preferred treatment. Fewer patients reported disruption to daily life and the ability to go to work/school due to ravulizumab infusion frequency (4.0% and 5.7%, respectively) than eculizumab infusion frequency (72.0% and 60.0%), with similar results for caregivers. Conclusion: Adult patients and caregivers of pediatric patients indicated an overall preference for ravulizumab than eculizumab for the treatment of aHUS, driven primarily by infusion frequency. This study contributes to the emerging real-world evidence on the treatment impact and preference in patients with aHUS.

Mothers of Children With Special Health Care Needs: Exploring Caregiver Burden, Quality of Life, and Resiliency

This study aimed to explore caregiver burden, quality of life (QOL), and resilience in mothers of children with special health care needs (CSHCN), compare differences between mothers of CSHCN and healthy children, and differences between mothers of CSHCN on the basis of child severity. Mothers (n=106) with a child aged < 18 years were recruited. A cross-sectional design was used. Measures included the Caregiver Burden Inventory, Quality of Life Scale, and Brief Resilience Inventory. Pearson point-biserial correlations and independent t-tests were used to compare group differences. Caregiver burden and QOL were negatively correlated (p < .001). Mothers of CSHCN had greater burden (p < .001) and poorer QOL (p=.006). Child severity increased caregiver burden time (p=.003). Study findings expound on research indicating mothers of CSHCN experience greater burden and poorer QOL than their peers, and child severity increases burden via time commitment. Health care providers should assess risk factors for poor QOL and caregiver burden and provide appropriate resources.