Burden Scale Research Articles

Caregiver burden in informal spousal caregivers predicts psychological and physical health in patients following coronary artery bypass graft surgery: a longitudinal clinical cohort study.

Previous research has shown that informal caregiver burden can have deleterious effects on patient recovery; however, this relationship has yet to be investigated in patients undergoing coronary artery bypass graft (CABG) surgery. This study aimed to examine the impact of the change of caregiver burden from pre- to post-surgery on patients' mental and physical health after CABG surgery. Ninety patient-caregiver dyads were assessed one month before the surgery, two months and one year after the surgery. Caregivers completed the Oberst Burden Scale to measure caregiver burden. Patients completed the Beck Depression Inventory to measure depressive symptoms, a subscale of the Hospital Anxiety and Depression Scale to measure anxiety symptoms, the Short Form-12 health assessment to measure health-related quality of life, and the Coronary Revascularisation Outcomes Questionnaire to measure surgery symptoms. Hierarchical linear regression analyses were conducted to explore the association between change in caregiver burden and post-surgery patient outcomes. A greater increase in caregiver burden from pre- to two-months post-surgery significantly predicted higher patients' depressive symptoms (β = 0.179, p = 0.010), anxiety symptoms (β = 0.114, p = 0.017), reported post-surgery symptoms (β = 0.335, p = 0.008) and reduced physical health-related quality of life (β = -0.358, p = 0.003), after controlling for a wide range of covariates. These findings were not replicated at a one-year follow-up. These results provide insights into the impact of caregiver burden on patient distress following CABG surgery, supporting the idea of psychological support interventions for caregivers to increase patients' short-term recovery outcomes.

Racial and ethnic disparities in potentially inappropriate medication use in patients with dementia.

Racial and ethnic disparities in potentially inappropriate medication (PIM) use among older adults with dementia are unclear. Data were drawn from the baseline visits of participants who were ≥60 years old and diagnosed with dementia in the National Alzheimer's Coordinating Center Uniform Data Set (NACCUDS) recruited from National Institute on Aging (NIA)-funded Alzheimer's Disease Research Centers (ADCs) throughout the United States. PIM utilization was evaluated using the 2019 American Geriatrics Society Beers Criteria for PIM Use in Older Adults. We estimated the association between race and ethnicity and the following outcomes and estimation models: (1) any PIM use, any PIM in each drug class, and any PIM best avoided in dementia patients using logistic regression models, (2) total number of medications, total number of PIMs, and anticholinergic burden scale (ACBS) using Poisson or negative binomial regression models, and (3) proportion of total medications that were PIMs using generalized linear models (GLM). Compared to White participants, Black, Hispanic, and Asian participants reported taking fewer total medications (incidence rate ratio [IRR] ± standard error[SE] = 0.903 ± 0.017, 0.875 ± 0.021, and 0.912 ± 0.041, respectively, all p < 0.01). Asian participants were less likely to be exposed to any PIM (odds ratio [OR] ± SE = 0.619 ± 0.118, p < 0.05). Compared to White participants, Black participants were less likely to be exposed to benzodiazepine (OR ± SE = 0.609 ± 0.094, p < 0.01) and antidepressant (OR ± SE = 0.416 ± 0.103, p < 0.001) PIMs, but greater antipsychotic (OR ± SE = 1.496 ± 0.204, p < 0.01), cardiovascular (OR ± SE = 2.193 ± 0.255, p < 0.001), and skeletal muscle relaxant (OR ± SE = 2.977 ± 0.860, p < 0.001) PIMs. Hispanic participants were exposed to greater skeletal muscle relaxant PIMs and had lower anticholinergic burden. Asian participants were exposed to fewer benzodiazepine PIMs. Significant racial and ethnic disparities in exposure to PIMs and PIMs by medication category in dementia research participants who have access to dementia experts found in the study suggest that disparities may be wider in the larger community.

Impact of the Anticholinergic Burden on Disease-Specific Symptoms in Parkinsonian Syndromes.

Background: Anticholinergic adverse effects pose a relevant threat to patients, in particular elderly and cognitively impaired patients. Patients with Parkinsonian syndromes are especially at risk from anticholinergic adverse effects due to the often-required complex drug therapy. Aims: The aim of this study was to evaluate the potential effect of the anticholinergic burden on motor and non-motor symptoms in Parkinson's disease and atypical Parkinsonian syndromes. Methods: This cross-sectional, monocentric retrospective data analysis included 151 patients with Parkinson's disease (PD), 63 with progressive supranuclear palsy (PSP), and 36 with multiple system atrophy (MSA). The anticholinergic burden of patients' medications was determined using two established scores: the Anticholinergic Drug Scale (ADS) and the German Anticholinergic Burden Scale (GABS). These scores were compared between the different diseases and correlated with several disease-specific scores. Results: Anticholinergic burden was higher in patients with PD, in particular, compared to PSP. In the PD group, anticholinergic burden showed a weak correlation with almost all analyzed clinical scores and the number of administered drugs. The UMSARS I and II showed a significant correlation with the anticholinergic burden in MSA patients. In general, the GABS-measured anticholinergic burden was significantly higher compared to the ADS-measured. Conclusions: The calculated anticholinergic burden affected motor and non-motor symptoms in patients with various Parkinsonian syndromes poorly. Since the GABS also contains basic anti-parkinsonian drugs, this score tended to overestimate the anticholinergic burden in patients with Parkinsonian syndromes and, therefore, seemed less appropriate for this application.

2336 Prevalence of anticholinergic burden across a cohort of frail older adults in a district general Hospital in South West Wales

Abstract Background and Objectives Polypharmacy is common in frail older adults who often live with multiple co-morbidities. This polypharmacy can carry a significant anticholinergic burden. Frail older adults are particularly sensitive to the anticholinergic side effects of medications which can include constipation, urinary retention and dry mouth. Medications with a high anticholinergic burden scores have also been evidenced to contribute to an increased frequency of falls, cognitive decline and increased mortality. For frail older adults, a medication review, considering anticholinergic burden, is therefore an essential part of Comprehensive Geriatric Assessment. A local frailty census was completed for all medical inpatients over the age of 65 years old and as part of this anticholinergic burden scores were collated. Materials and Methods As part of this whole hospital frailty census, an anticholinergic burden score (ACB) was calculated for 77 inpatients. This was calculated using the Anticholinergic Cognitive Burden Scales and Anticholinergic Burden scores. Results The average age of the patients was 80.19 (± 9.35). 80.01% of patients were taking one or more medications with an anticholinergic burden. Of those, 40.25% had a significant ACB score of 3 or more (3–8). The patients with the highest ACB scores were those with multi-morbidity, an already established diagnosis of dementia and patients with recurrent falls. Conclusions The ACB score for patients included within this frailty census appeared to correlate with certain co-morbidities as would be expected from the known complications associated with these medications in frail older adults. The proportion of our inpatients with a significant ACB score informs us that we need to develop a more robust approach to delivering polypharmacy reviews as part of Comprehensive Geriatric Assessment within our hospital and will help us to inform future service planning and delivery.

Translation and validation of the caregiving burden scale for family caregivers of children with cancer in chinese population

BackgroundEffective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool.AimsThis study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool.MethodsAccording to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted.ResultsA total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach’s alpha of the Chinese version of CBSFC-CC was .96, and the test–retest reliability coefficient was .95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC.ConclusionThe chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China.

Enhancing Outcomes in Alzheimer's Disease: Exploring the Effects of a Diversified Rehabilitation Program Combined with Donepezil on Apathy, Cognitive Function, and Family Caregiver Burden.

Alzheimer's disease is a progressive neurodegenerative disorder characterized by cognitive decline, behavioral changes, and functional impairments. Apathy, a common symptom in Alzheimer's disease, refers to a lack of motivation, interest, and emotional responsiveness. It can significantly impact patients' quality of life and increase caregiver burden. This study aimed to determine the effects of a diversified rehabilitation program combined with donepezil on apathy, cognitive function, and family caregiver burden of Alzheimer's disease patients. A total of 105 Alzheimer's disease patients treated at our hospital between January 2020 and January 2023 were selected and analyzed retrospectively. They were assigned to the control group (n = 50) or the observation group (n = 55). The two groups did not differ in terms of general data such as age and sex. All patients were treated with donepezil orally. The control group was given routine nursing, whereas the observation group was given a diversified rehabilitation program intervention, including cognitive training and emotional support. The Hasegawa's dementia scale, mini-mental state examination, and Montreal cognitive assessment scale were adopted to evaluate the cognitive function of the two groups before and after treatment. A caregiver burden scale, the Zarit Burden Interview (ZBI) and the Apathy Evaluation Scale Informant version (AES-I) were used to evaluate the caregiver burden and apathy of the two groups. A significantly higher overall response rate to treatment was found in the observation group (94.55%) than in the control group (80.00%) (p = 0.024). After treatment, scores on the Hasegawa's dementia scale, mini-mental state examination, and Montreal cognitive assessment scale of the two groups increased to varying degrees, with greater increases in the observation group than in the control group (p < 0.05). The ZBI and AES-I scores of the two groups decreased to different degrees after treatment, with greater decreases in the observation group than in the control group (p < 0.05). A diversified rehabilitation program combined with donepezil can substantially alleviate the apathy of Alzheimer's disease patients, improve their cognitive function, and reduce the burden on their families.

Development and Validation of the Dementia Caregiver Burden Scale: A Tool for Community-Dwelling Dementia Caregiver.

The number of patients with dementia increases rapidly in aging populations. Dementia is an irreversible disease that causes a patient to be dependent on others' care and also causes family caregivers to experience difficulties in multiple domains. In this study, a dementia caregiver's burden scale that addresses family caregivers' characteristics and caring environments was developed and validated. In-depth interviews with nine caregivers were conducted to identify the attributes of perceived burden and establish preliminary questions. Content validity was confirmed by seven experts using the item content validity index and scale content validity index/average. Construct validity, criterion-related validity, and reliability were verified using data from 205 primary caregivers of patients with dementia. Exploratory factor analysis revealed that five factors, including physical health deterioration, responsibility and role of caregiver, emotional distress, medical expense concerns, and family conflict, and 24 items explained 68.6% of the total variance. The calculated Cronbach's α for the overall scale was .96. The scale developed in this study may be used to measure the burden perceived by family caregivers of patients with dementia in the physical, emotional, social, financial, and situational domains. Also, the scale may be used to guide the development of tailored interventions that take into consideration different family caregiver and caring situation-related characteristics.

Influence of Financial Toxicity on the Quality of Life in Lung Cancer Patients Undergoing Immunotherapy: The Mediating Effect of Self-Perceived Burden.

The purpose of this study is to understand the level of quality of life (QOL) of lung cancer patients receiving immunotherapy and to clarify the potential mediating role of self-perceived burden (SPB) in the relationship between financial toxicity (FT) and QOL. A convenience sample of 342 lung cancer patients receiving immunotherapy was recruited from a cancer hospital from October 2022 to April 2023 for this cross-sectional study. The participants were requested to complete the following structured questionnaires: a sociodemographic and clinical questionnaire, the Functional Assessment of Cancer Therapy-Lung (FACT-L), the Self-Perceived Burden Scale (SPBS) and the COmprehensive Score for Financial Toxicity (COST). The data were subjected to Pearson correlation analysis and bootstrapping analysis in structural equation modelling. The total FACT-L score was 79.90±15.84 points in 322 lung cancer patients receiving immunotherapy. FT (β = 0.37, P < 0.01) and SPB (β = -0.27, P < 0.01) had a direct effect on QOL. In addition, SPB partly mediated the association between FT and QOL, and the standardized indirect effect was 0.19, accounting for 33.9% of the total effect. The present study revealed that there is still much room for improvement in the QOL of lung cancer patients during immunotherapy. A greater financial burden resulted in a greater self-perceived burden and was thus associated with inferior QOL. It is imperative for oncology nurses to routinely assess QOL, FT or risk and SPB for lung cancer patients undergoing immunotherapy as well as to assist those patients in understanding the potential financial risk of each choice and help them take more active roles in their routine clinical care.

The Impact of Palliative Decompressive Gastrostomy Tube Placement on Patients and Their Caregivers: A Mixed Methods Analysis.

Palliative decompressive gastrostomy tubes are intended to relieve the severe physical symptoms of malignant small bowel obstruction (SBO) near the end of life. The objective of this study was to assess the impact of palliative decompressive gastrostomy tube on patient and caregiver well-being. We prospectively enrolled patients with a malignant SBO and their caregivers at the time of informed consent for decompressive gastrostomy tube placement. We collected the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Chronic Illness Therapy-Palliative (FACIT-Pal-14) surveys from patients at baseline and at 2-week post-procedure follow-up. The Caregiver Burden Scale survey was administered to caregivers at baseline. Survey scores were compared using paired t-tests. We also conducted semistructured interviews with patients and their caregivers at two-week follow-up until thematic saturation was reached. Content analysis was used to identify themes with two independent coders. We enrolled 15 patient-caregiver dyads. Preprocedure, the median caregiver burden scale score was 37.5 (significant burden ≥ 21). Eight patients (53%) survived to 2 weeks; among these patients, median ESAS scores (51 versus 43.5, p < 0.001) and median FACIT-Pal-14 scores (22 versus 32, p = 0.015) were significantly improved at 2-week follow-up. Interviews revealed three major themes: improved symptom management, new stressors, and opportunities for better education and resources. Decompressive gastrostomy tubes effectively alleviated symptoms in patients with inoperable malignant SBOs. This palliative intervention may provide greater benefit if performed earlier, and caregivers and patients need improved resources and education for tube management to minimize added stressors.

Stigma and related influencing factors in brain cancer patients: a cross-sectional study and parallel mediation analysis.

Patients with brain cancer and painful symptoms of the disease experience heavy pressure and negative inner experiences, leading to a sense of stigma. Therefore, this study assessed the level of stigma in patients with brain cancer and analyzed the risk factors for stigma to analyze the underlying relationships among depression, social support, low self-esteem, and stigma. Patients completed the Social Impact Scale, Self-rating Depression Scale, Rosenberg Self-Esteem Scale, Herth Hope Index, Social Support Rating Scale, and Self-Perceived Burden Scale. Multiple linear regression analysis was used to identify factors independently associated with stigma. Parallel mediation analysis was used to evaluate the mediating role of the relationship between psychoemotional factors and stigma. A multivariate linear regression analysis demonstrated significant associations between age (β = - 0.189, P = 0.002), treatment (β = 0.184, P = 0.003), self-esteem (β = - 0.128, P = 0.046), depression (β = 0.273, P < 0.001), hope (β = - 0.217, P = 0.003), and self-perceived burden (β = 0.260, P < 0.001) with brain cancer. It was observed that the social support received by brain cancer patients directly impacted their stigma (total effect, - 0.851, P = 0.001). Additionally, this relationship was influenced by depression and self-esteem through two distinct pathways. Increased stigma among brain cancer patients was found to be associated with severe depression, feelings of inferiority, diminished hope, and a heavy perceived burden. The structural equation modeling (SEM) revealed that social support negatively influenced stigma through depression and self-esteem. It is imperative to grasp patients' inner needs, implement psychological interventions, and cultivate a cancer-friendly social environment to prevent stigmatization and discrimination based on their patient status.

Internal Psychometric Validation of an International Burden of Illness Survey for Idiopathic Multicentric Castleman Disease.

Idiopathic multicentric Castleman disease (iMCD) is a rare, chronic, debilitating lymphoproliferative disorder where the mainstay of treatment is symptom management. Our recent international patient survey showed that patients with iMCD have a high symptom burden that has a significant negative patient-reported impact on several aspects of daily life. As part of our ongoing work towards the development of an iMCD symptom burden scale, assessing the survey's psychometric properties is a critical step in understanding its adequacy, relevance, and usefulness. As iMCD is a rare disease, there are challenges to conducting such psychometric analyses which we describe. As part of the exploratory psychometric analysis, three a priori hypothesis sets (HS) were generated by interviewing an iMCD-experienced clinician, a patient, and a caregiver to explore the iMCD patient survey's internal construct validity, given no gold standard iMCD measure exists for external construct validation. HS-1hypothesized that a convergent or discriminant relationship exists with the patients' self-assessment of symptom effect on daily life between two potentially related or unrelated symptoms, respectively. HS-2hypothesized that having a greater number of symptoms has a positive convergent relationship with the patients' assessment of symptoms' effect on daily life. Finally, HS-3hypothesized that patients receiving treatment versus no treatment was associated with patients reporting less effect of symptom burden on their daily life. Spearman's rank absolute correlation strength (ACS) was used for HS-1 and HS-2 (convergent relationship, ACS ≥ 0.3 and pvalue < 0.05; divergent relationship, ACS < 0.3), and Cohen's d to quantify standardized absolute effect sizes (AES) for HS-3 (AES ≥ 0.5 and pvalue < 0.05). Our analyses partially supported HS-1. None of the three positive convergent relationships were supported. Of the six discriminant relationships, only dizziness with impaired cognitive function and tiredness with dizziness were supported. HS-2 analyses showed there was convergent validity between the number of symptoms and their effect on aspects of daily life. HS-3 analyses did not provide evidence to support the hypothesis. These internal psychometric construct analyses provide initial support for the bespoke iMCD patient survey and will guide additional work towards the development of the first iMCD-specific symptom burden scale.

Assessment of drug therapy satisfaction amongst the elderly: A patient reported outcomes measures approach

BackgroundUnderstanding elderly experiences enhance healthcare outcomes and patient satisfaction. Recognizing caregivers’ role and implementing supportive measures enhance care. ObjectivesQuantify drug satisfaction using patient-reported outcomes measures approach. Assess caregiver burden using short version of Burden Scale for Family Caregivers. MethodsSix-month cross-sectional study in Department of Geriatrics. Elderly (≥60), minimum one comorbidity, admitted for >48 h, and consenting to participate were enrolled. Patient satisfaction assessed using Treatment Satisfaction with Medicines Questionnaire (SATMED-Q). SPSS version 27 used to calculate odds ratio. Results282 participants enrolled. SATMED-Q score 47.41 ± 10.34, indicating overall satisfaction. Treatment satisfaction range 47.07 % to 100 %. Age [OR 0.964, 95 % CI 0.932–0.996 (p = 0.029)] and education [OR 1.500, 95 % CI 1.129–1.992 (p = 0.005)] influenced satisfaction. 268 [95.03 %] had caregivers, 14 [4.96 %] did not. Caregiver burden score 9.25 ± 9.11. ConclusionInsights obtained from assessing satisfaction and caregiver burden enables physicians to improve welfare of elderly and caregivers.

The Mediating Effect of Symptom Burden in the Depression and Quality of Life in Patients with Maintenance Hemodialysis.

To investigate current status of quality of life and the association between depression and symptom burden in a sample of Chinese maintenance hemodialysis (MHD) patients. A self-designed patient general information questionnaire, disease-related information questionnaire, dialysis patient symptom burden scale, depression scale, and quality of survival scale were used to investigate 380 maintenance haemodialysis patients in haemodialysis centres. A regression model of the factors affecting the quality of survival was established using structural equation modelling. The regression model data had a high goodness of fit: c2/df = 4.736, RMSEA = 0.099, GFI = 0.918, CFI = 0.972, TLI = 0.962, SRMR = 0.0469. Structural equation model analysis showed that depression had a positive predictive effect on symptom burden, β = 0.398, P < 0.001; Symptom burden had a negative predictive effect on the quality of life, β =-0.851, P < 0.001; and Depression had a negative predictive effect on the quality of life, β =-0.151, P < 0.001. Depression indirectly affects the quality of life through symptom burdens. Depression and symptom burden directly or indirectly affect the quality of life in patients with maintenance hemodialysis. Symptom burden moderates the relationship between depression and quality of life as a mediating variable.

Development and Validation of a Community-Based Prediction Model for Depression in Elderly Patients with Diabetes: A Cross-Sectional Study.

In elderly diabetic patients, depression is often overlooked because professional evaluation requires psychiatrists, but such specialists are lacking in the community. Therefore, we aimed to create a simple depression screening model that allows earlier detection of depressive disorders in elderly diabetic patients by community health workers. The prediction model was developed in a primary cohort that consisted of 210 patients with diabetes, and data were gathered from December 2022 to February 2023. The independent validation cohort included 99 consecutive patients from February 2023 to March 2023. Multivariable logistic regression analysis was used to develop the predictive model. We incorporated common demographic characteristics, diabetes-specific factors, family structure characteristics, the self-perceived burden scale (SPBS) score, and the family APGAR (adaptation, partnership, growth, affection, resolution) score. The performance of the nomogram was assessed with respect to its calibration (calibration curve, the Hosmer-Lemeshow test), discrimination (the area under the curve (AUC)), and clinical usefulness (Decision curve analysis (DCA)). The prediction nomogram incorporated 5 crucial factors such as glucose monitoring status, exercise status, monthly income, sleep disorder status, and the SPBS score. The model demonstrated strong discrimination in the primary cohort, with an AUC of 0.839 (95% CI, 0.781-0.897). This discriminative ability was further validated in the validation cohort, with an AUC of 0.857 (95% CI, 0.779-0.935). Moreover, the nomogram exhibited satisfactory calibration. DCA suggested that the prediction of depression in elderly patients with diabetes mellitus was of great clinical value. The prediction model provides precise and user-friendly guidance for community health workers in preliminary screenings for depression among elderly patients with diabetes.

Evaluating the Effectiveness, Tolerability, and Safety of Eptinezumab in High-Frequency and Chronic Migraine in Real World: EMBRACE-The First Italian Multicenter, Prospective, Real-Life Study.

We conducted a multicenter, prospective study (EMBRACE) evaluating the real-life effectiveness, safety, and tolerability of eptinezumab (100 mg/300 mg)-a monoclonal antibody targeting the calcitonin-gene-related peptide (anti-CGRP mAb)-in high-frequency episodic migraine (HFEM) or chronic migraine (CM). The primary endpoint was the change in monthly migraine days (MMD) for HFEM or monthly headache days (MHD) for CM at weeks 9-12 compared to baseline. The secondary endpoints included changes in monthly analgesic intake (MAI), Numerical Rating Scale (NRS), Headache Impact Test (HIT-6), Migraine Disability Assessment Scale (MIDAS), Migraine Interictal Burden Scale (MIBS-4), and responder rates. The safety analysis involved 44 subjects; the effectiveness analysis included 26 individuals. Eptinezumab was well-tolerated. In CM patients, eptinezumab significantly reduced MHD (-16.1 ± 9.9, p < 0.001), MAI, NRS, HIT-6, MIDAS, and MIBS-4. In HFEM patients, it significantly reduced NRS, HIT-6, MIDAS, and MIBS-4, though reductions in MMD (-3.3 ± 4.5) and MAI were not statistically significant. Overall, ≥50% and ≥75% response rates were 61.5% and 30.8%, respectively (60% and 30% in non-responders to subcutaneous anti-CGRP mAbs). The clinical change was rated as much or very much improved by 61.0% of the patients. Eptinezumab demonstrated high effectiveness, safety, and tolerability in real-life among hard-to-treat migraine patients with multiple treatment failures, including anti-CGRP mAbs.

Educational Intervention for the Management of Nonspecific Lower Back Pain in Nonprofessional Caregivers (TRANSFE Program): A Quasi-Experimental Study.

Nonspecific lower back pain is one of the main health issues experienced by nonprofessional caregivers of dependent individuals. The repetitive movements and efforts made by caregivers to assist dependent individuals are associated with the onset of this lower back pain. The main objective of this study was to assess the effectiveness of an educational intervention for the management of nonspecific lower back pain in nonprofessional caregivers of dependent individuals (TRANSFE program). The secondary objectives were to (i) evaluate the effectiveness of the TRANSFE program on other variables (caregiver burden, perceived social support, and health-related quality of life), (ii) obtain the sociodemographic profile of the sample, and (iii) determine the baseline of the study variables. A quasi-experimental study with post-intervention measurements at 3 months was conducted. Thirty-six nonprofessional caregivers of dependent individuals participated in this study. The presence of lower back pain (back pain index), low back pain (visual analogue scale), disability due to low back pain (Oswestry disability index), perceived social support (Duke-UNK scale), caregiver burden (Zarit burden scale), and health-related quality of life (EuroQol-5D) were assessed. The intervention significantly improved all the studied variables related to lower back pain (p < 0.001). The intervention was effective on other variables related to nonprofessional caregiving such as caregiver burden, perceived social support, and health-related quality of life, albeit with moderate results. An educational intervention for lower back pain experienced by caregivers of dependent individuals was effective in reducing lower back pain and addressing caregiver burden, perceived social support, and health-related quality of life. This study was registered retrospectively on the Open Science Framework platform on 20 June 2024, with the registration number 10.17605/OSF.IO/K7WTE.

The relationship between social and psychological factors with cognitive impairment after stroke: a prospective study.

To investigate the association between social and psychological factors and the risk of cognitive impairment following acute ischemic stroke. A prospective study was conducted at Shanghai Tenth People's Hospital from June 2021 to July 2022. The study focused on social and psychological factors, which were assessed using the Social Support Rating Scale (SSRS), Self-Perceived Burden Scale (SPBS), and Hamilton Depression Scale (HAMD) within 3 days after admission to the hospital. Cognitive function was evaluated using the Montreal Cognitive Assessment at 3 months post-stroke. Logistic hierarchical regression models were used to examine the association between these three indicators and cognitive impairment following a stroke. Among these patients, cognitive function was assessed in 211 cases at the 3-month follow-up after the initial stroke event. At 3 months post-stroke, 118(55.9%) of the participants experienced cognitive impairment, while 93(44.1%) did not. The scores on the SPBS and HAMD showed significant associations with cognitive impairment at 3 months after stroke. The scores of SPBS [scores: 30~39 vs.<20 points, odds ratio (OR)=2.993 (1.135-7.896); scores: ≥40 vs.<20points, OR=7.382 (1.117-48.799); P=0.043] and the HAMD [scores: >7 vs.≤7 points, OR=3.287(1.362~7.936); P=0.008]. There were no significant associations observed between SSRS and PSCI. Early screening for depressive symptoms and focusing on self-perceived burden can be beneficial for decision support for clinicians and improve cognitive function recovery at the 3-month mark post-stroke.

Association of Patient Reported Outcomes With Caregiver Burden in Older Patients With Advanced Heart Failure: Insights From the SUSTAIN-IT Study.

Caregivers of patients with advanced heart failure may experience burden in providing care, but whether changes in patient health status are associated with caregiver burden is unknown. This observational study included older patients (60-80 years old) receiving advanced surgical heart failure therapies and their caregivers at 13 US sites. Patient health status was assessed using the 12-item Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores are better). Caregiver burden was assessed using the Oberst Caregiving Burden Scale, which measures time on task (OCBS-time) and task difficulty (OCBS-difficulty; range, 1-5; lower scores are better). Measurements occurred before surgery and 12 months after in 3 advanced heart failure cohorts: patients receiving long-term left ventricular assist device support; heart transplantation with pretransplant left ventricular assist device support; and heart transplantation without pretransplant left ventricular assist device support. Multivariable linear regression was used to identify predictors of change in OCBS-time and OCBS-difficulty at 12 months. Of 162 caregivers, the mean age was 61.0±9.4 years, 139 (86%) were female, and 140 (86%) were the patient's spouse. At 12 months, 99 (61.1%) caregivers experienced improved OCBS-time, and 61 (37.7%) experienced improved OCBS-difficulty (versus no change or worse OCBS). A 10-point higher baseline 12-item Kansas City Cardiomyopathy Questionnaire predicted lower 12-month OCBS-time (β=-0.09 [95% CI, -0.14 to -0.03]; P<0.001) and OCBS-difficulty (β=-0.08 [95% CI, -0.12 to -0.05]; P<0.001). Each 10-point improvement in the 12-item Kansas City Cardiomyopathy Questionnaire predicted lower 12-month OCBS-time (β=-0.07 [95% CI, -0.12 to -0.03]; P=0.002) and OCBS-difficulty (β=-0.09 [95% CI, -0.12 to -0.06]; P<0.001). Among survivors at 12 months, baseline and change in patient health status were associated with subsequent caregiver time on task and task difficulty in dyads receiving advanced heart failure surgical therapies, highlighting the potential for serial 12-item Kansas City Cardiomyopathy Questionnaire assessments to identify caregivers at risk of increased burden. URL: https://www.clinicaltrials.gov; unique identifier: NCT02568930.

The struggle that is phenylketonuria: What do the patients and caregivers suffer from.

To assess stress levels and life hardships of patients with phenylketonuria and their parents. Between January 2020 and June 2020, 156 patients with PKU and their parents who arrived for regular examinations were included. Parents were asked to complete the parenting stress index, Zarit Burden Scale, and the Strengths and Difficulties Questionnaire (SDQ), and children over the age of 11 were asked to fill the Rosenberg Self-Esteem Scale, the State-Trait Anxiety Inventory, and the SDQ. We found a significant negative correlation between the Rosenberg Self-Esteem Scale and age at diagnosis (r = -0.27, P = .035), mother's age (r = -0.33, P = .009), and father's age (r = -0.38, P = .004). There was a significant positive correlation between the State-Trait Anxiety Inventory and patient's age (r = 0.36, P = .006), mother's age (r = 0.29, P = .031) and father's age (r = 0.38, P = .024). In the child form of the SDQ, emotional problems were significantly positively correlated with serum phenylalanine (Phe) levels at diagnosis (r = 0.35, P = .036), total points were significantly positively correlated with serum Phe levels at clinical examination (r = -0.34, P = .004), and social problems were significantly negatively correlated with the father's age (r = -0.34, P = .047). We found a significant positive correlation between the Zarit Burden Scale and number of siblings (r = 0.195, P = .023). In the parent form of the SDQ, emotional problems were significantly positively correlated with patient age (r = 0.217, P = .032), peer problems were significantly positively correlated with age at diagnosis (r = 0.211, P = .037), behavioral problems (r = 0.203, P = .045), and attention deficit and hyperactivity (r = 0.203, P = .045) were significantly positively correlated with serum Phe levels at diagnosis. Phenylketonuria is difficult to cope with both for the patients and their parents because of diet obligation, high expenditures for the formulas required for the diet, requirement of regular clinical examinations, and possible development of mental disability and psychiatric disorders. Patients and their families should be psychologically evaluated and support should be provided if needed.

PALC-01. CARING FOR DYING CHILDREN: EXPERIENCES OF FAMILY CAREGIVERS OF CHILDREN RECEIVING PEDIATRIC PALLIATIVE TREATMENT

Abstract INTRODUCTION Caring for children living with life-threatening and life-limiting illnesses can be challenging for families. Parents’ roles as primary caregivers can be complex, with extensive responsibilities. METHOD A mixed-design study was conducted with the caregivers of 26 children receiving treatment in palliative care. In the qualitative part of the research, a semi-structured interview was conducted and the question “What does caring for a child with advanced stage cancer mean to you? What are your concerns and concerns?” were asked. In the quantitative part, the caregiving burden scale, Beck Anxiety Questionnaire and WHOQOL-BREF quality of life scale were used. The relationship between quality and other factors was examined with Pearson correlation analysis. Phenomenological content analysis was performed for qualitative data. RESULTS As a result of the analysis of the data, two main themes were identified. The main themes from family caregivers’ experiences included (1) fear and anxiety about losing their child, and (2) disconnection from other children and families. A statistically significant negative relationship was detected between caregivers’ caregiving burden, anxiety levels, quality of life and sub-parameters (General Health, Physical Health, Mental Health, Social Health, Environmental Health) (p&amp;lt;0.001). CONCLUSION Caring for a dying child with cancer can pose psychological challenges as well as medical and physical ones. Families’ resilience, family dynamics and quality of life can be significantly affected. Treatment processes in palliative and oncological care are multifactorial and should include families.