Mean Burden Score Research Articles

Đánh giá gánh nặng chăm sóc và một số yếu tố liên quan của người chăm sóc người bệnh đột quỵ tại Khoa Nội - Hồi sức Thần kinh Bệnh viện Hữu Nghị Việt Đức

Objective: To assess caregiver burden and related factor to constipation among caregivers of stroke patients in Department of Neurology and Neuro Intensive Care, Viet Duc University Hospital. Methodology: This is a cross-sectional study performed in 90 caregivers of stroke patients. Zarit Burden Interview was used to assess caregiver burden Results: The mean score of caregiver burden was 20.83 ± 13.02; and majority of caregivers had mild to moderate burden (47.8%), there were 6.7% of caregiver had moderate to severe burden (p < 0.05). Perceived self-health, the number of days for caregiving, and functional dependence of stroke patients had statistically significant associations with caregiver burden, in which the number of days for caregiving, and functional dependence of stroke patients statistically significant predicted caregiver burden (p < 0.05). Conclusion: Caregiver burden of caregivers of stroke patients in our study were moderate. Early interventions that focus on risk factors, support caregivers in caring for patients, and increase the patient's functional independence will help reduce caregiver burden.

Cross-sectional study of factors associated with caregiver's burden in patients diagnosed with psychotic disorders in urban India.

Pharmacotherapy has deinstitutionalized the patients with psychotic disorder. This has led to the transfer of the caregiving burden from hospitals to family members of the patients. This study aimed to assess the caregivers' burden and the factors associated with it objectively. This was a cross-sectional survey conducted amongst 143 caregivers of patients diagnosed with psychotic disorders reporting to a psychiatric outpatient department. The investigative tool used was a 12-item ZARIT Burden Interview (ZBI) questionnaire. The frequency of schizophrenia amongst patients with psychotic disorder was 68.5%. The median age of caregivers was 50 years in the "high burden" group, 40 years in the "moderate burden" group, and 34 years in the "no/mild burden" group. The mean score of burden experienced by the caregiver was 27.5 ± 9.7. The degree of burden was high in 66% of caregivers. The caregivers were generally more females, married, less educated, and mainly parents. A high degree of burden was associated with variables viz. female gender (OR 1.77 [0.88, 3.57], P = .043), low education status (OR 2.31 [1.09, 4.91] P = .002), unemployed status (OR 2.32 [1.12, 4.78] P = .027) and, increasing age of caregiver. No significant association was found between the degree of burden and variables, viz. marital status of caregivers, duration of caregiving, and duration of patient's illness. The current study identifies variables that can predict caregiver's burden. These results also suggest the implementation of psycho-educational, community-based programs which can address the core issues associated with caregiving.

Demographics, Clinical Characteristics, and Well-Being of Veterans with TBI and Dementia and Their Caregivers.

This study provides a detailed examination of older Veterans with traumatic brain injury (TBI) and dementia and their caregivers, focusing on Veterans' demographic, clinical, functional, safety risk, and behavioral characteristics and caregivers' demographic, clinical, and care-related characteristics and well-being. Veterans' caregivers (N = 110) completed a telephone-based survey. Veterans averaged eight comorbid health conditions, with over 60% having chronic pain, hypertension, post-traumatic stress disorder, or depression. Caregivers reported helping with an average of three activities of daily living, with the highest percentages of Veterans needing assistance with grooming, dressing, and bathing. Almost all Veterans needed assistance with shopping, cooking, medication management, housework, laundry, driving, and finances. Veterans averaged two safety risks, the most common being access to dangerous objects, access to a gun, and not being able to respond to emergency situations. Although Veterans averaged 14 behavioral concerns, caregivers reported that their family needs relating to TBI were generally met or partly met, and they voiced confidence in their ability to respond to behaviors and control their upsetting thoughts. Caregivers' mean burden score was severe, while mean depression and anxiety scores were mild. Caregivers reported an average of 10.5 h per day providing care and 20.1 h per day on duty. The findings demonstrate the increased presence of impairments, safety risks, and behavioral issues in Veterans with comorbid TBI and dementia, as well as increased impacts on families' burdens and care provision requirements. Clinicians should be alert for and educate TBI patients and caregivers on the warning signs of post-TBI dementia and its associated functional, behavioral, and safety risk profile, as well as challenges related to caregiver well-being. Healthcare policymakers must consider the increased caregiver demands associated with comorbid TBI and dementia, as well as the need for expanded long-term support and services.

Predictors of caregiver burden in Alzheimer’s disease: Caregiver stress, life satisfaction and quality of life levels

Objective: The purpose of this study was to determine the impact of socio-demographic and health characteristics, caregiving stress, life satisfaction, and quality of life on the caregiving burden in caregivers of Alzheimer’s patient. Methods: This study is a descriptive-correlational type study. A total of 146 individuals who are caregivers of Alzheimer’s patient constitute the sampling of the study. The Zarit Burden Interview, Caregiver Strain Index, Satisfaction with Life Scale, and SF-36 Quality of Life. Results: The care burden mean score of caregivers was 61.29±10.3. It was determined that age (β=0.648), caring duration (β=0.429), gender(β=0.672), marital status(β=0.936), educational status(β=0.863), the affinity of the caregiver with the patient(β=0.734), working status(β=0.524), perceived income adequacy(β=0.926), perceived health condition(β=0.682), presence of chronic disease(β=0.529), caregiving stress(β=0.633), life satisfaction score(β=-0.775), physical subscale score (β=-0.824) and mental subscale score(β=-0.489) quality of life had an influence on the caregiving burden (p<0.001). It was determined that the effective determining factors account for 76.4% of the variation in the caregiving burden. Conclusions: The caregivers of Alzheimer’s disease patients have a high caring burden. In addition to the socio-demographic and health characteristics of caregivers, caregiving stress, life satisfaction, and quality of life are important determinants of the caring burden.

Increased Active Inflammation in the Colon is Not a Reliable Predictor of an Elevated Risk of Dysplasia in Patients With Primary Sclerosing Cholangitis and Ulcerative Colitis.

Although the increased risk of colorectal neoplasia in patients with both primary sclerosing cholangitis (PSC) and ulcerative colitis (UC; termed PSC-UC) is well documented, the mechanism through which concomitant PSC increases the risk of colorectal neoplasia remains unclear. Given that the risk of colorectal neoplasia in UC is positively correlated with increased histologic inflammation, this study sought to investigate whether increased histologic inflammation could be used to stratify the risk of dysplasia development in patients with PSC-UC. Twenty patients with PSC-UC and dysplasia were compared with 30 control patients with PSC-UC who had no history of neoplasia. For each patient, all surveillance biopsies were scored using a 4-point scoring system: (1) no epithelial neutrophils = 0, (2) cryptitis only = 1, (3) cryptitis plus crypt abscess in <50% of crypts = 2, and (4) crypt abscess in ≥50% of crypts, erosion, neutrophilic exudate, and/or ulceration = 3. A score was designated for each biopsy, and both mean and maximum inflammation scores were calculated from all biopsies taken during each colonoscopy. The inflammation burden score was calculated for each surveillance interval by multiplying the average maximum score between each pair of surveillance episodes by the length of the surveillance interval in years. The average scores derived from all colonoscopies for each patient were used to determine the patient's overall mean, maximum, and inflammation burden scores. In both the dysplasia and control groups, the 3 summative inflammation scores were calculated independently for the entire colon, right colon, and left colon. The dysplasia group consisted of 14 (70%) men and 6 (30%) women, with a mean age of 27 years at UC diagnosis and a long history of pancolitis (mean duration: 17y). A total of 49 dysplastic lesions were detected in the dysplasia group, and 8 (40%) of the 20 patients had multifocal dysplasia. The majority of dysplastic lesions belonged to nonconventional subtypes (n = 28; 57%) and were located in the right colon (n = 37; 76%). Irrespective of the colon segment, there was no significant difference in the 3 summative inflammation scores between the dysplasia and control groups ( P > 0.05). However, in each group, the 3 summative inflammation scores were significantly higher in the right colon than in the left colon ( P < 0.05). In conclusion, patients with PSC-UC exhibit increased histologic inflammation in the right colon compared with the left colon, regardless of the presence of dysplasia. Although this may provide an explanation for the predominance of right-sided colorectal neoplasia in patients with PSC-UC, increased histologic inflammation does not reliably predict an elevated risk of dysplasia in patients with PSC-UC. These findings reinforce the current recommendation for annual endoscopic surveillance for all patients with PSC-UC, irrespective of the extent and severity of inflammation.

Care for the caregiver: an exploration of caregiver burden of children with chronic medical conditions at a tertiary care hospital in Karachi, Pakistan – a mixed-methods study

ObjectivesCaregiver burden often goes unrecognised and can substantially affect caregivers’ physical, psychological and financial well-being, thereby impacting quality of care. This study investigates burden among caregivers of children with chronic...

The Development of Serrated Epithelial Change in Ulcerative Colitis is not Significantly Associated With Increased Histologic Inflammation.

Serrated epithelial change (SEC) in inflammatory bowel disease is most often defined as hyperplastic polyp-like mucosal change detected on random biopsies. Although SEC has been reported to be associated with an increased risk of synchronous and/or metachronous colorectal neoplasia, it remains unknown if SEC represents a form of dysplastic lesion despite the lack of morphologic evidence of dysplasia. Since the risk of colorectal neoplasia in ulcerative colitis (UC) is positively correlated with increased histologic inflammation, this study investigated if increased colonic inflammation is an independent risk factor for SEC. A cohort of 28 UC patients with SEC was analyzed and compared with 51 control UC patients without SEC. None of these patients had a history of colorectal neoplasia. For each patient with SEC, all biopsies conducted before and at the time of SEC diagnosis (versus all biopsies for each control patient) were scored by using a 4-point scoring system: no activity (no epithelial infiltration by neutrophils=0); mild activity (cryptitis only=1); moderate activity (cryptitis plus crypt abscess formation in <50% of crypts=2); and severe activity (crypt abscess formation in ≥50% of crypts, erosion, neutrophilic exudate, and/or ulceration=3). Each biopsy was designated a score, and both mean and maximum inflammation scores were calculated from all biopsies taken during each colonoscopy. The inflammation burden score was calculated for each surveillance interval by multiplying the average maximum score between each pair of surveillance episodes by the length of the surveillance interval in years. The average scores of all colonoscopies for each patient were used to assign the patient's overall mean, maximum, and inflammation burden scores. The SEC cohort included 12 (43%) men and 16 (57%) women with a mean age of 47 years at the time of the first SEC diagnosis and a long history of UC (mean: 13y). The majority of patients (n=21; 75%) had pancolitis, and only 1 (4%) patient had primary sclerosing cholangitis. A total of 37 SEC were identified in the 28 patients, 4 (14%) of whom had multifocal SEC. SEC was predominantly found in the left colon (n=32; 86%). In the multivariate analysis, none of the 3 summative inflammation scores, including overall mean (odds ratio [OR] 1.9, P =0.489), maximum (OR 0.4, P =0.259), and inflammation burden scores (OR 1.2, P =0.223), were significantly associated with the development of SEC. Similarly, no other potential risk factors, including age, gender, ethnicity, and duration and extent of UC, were significantly correlated with the detection of SEC ( P >0.05). In conclusion, the development of SEC in UC is not significantly associated with increased histologic inflammation. Given the reported association of SEC with an increased risk of synchronous and/or metachronous colorectal neoplasia, along with the presence of molecular alterations in some cases (such as TP53 mutations and aneuploidy), SEC may represent an early morphologic indicator of segmental or pan-colonic molecular abnormalities that have not advanced enough to result in colorectal neoplasia, as opposed to being a form of dysplasia.

Affiliate stigma and its association with family burden among family members of people living with schizophrenia in China

PurposeUnderstanding affiliate stigma and its impact on family of people living with schizophrenia (PLS) in China is important for culturally informed intervention. This study aims to describe the pattern of affiliate stigma of family members of PLS in China and investigated the association between affiliate stigma and family burden. MethodsPLS and their family members dwelling in community were randomly recruited from four cities across China and completed measures of affiliate stigma and family burden. Linear regression analyses were used to determine the association between affiliate stigma and family burden. ResultsA total of 493 dyads of family member and PLS were include in this study. The mean affiliate stigma in family members was 2.21 (SD = 0.61). The vast majority of family members reported the feeling of inferiority, helpless and sad because of their family members' schizophrenia, but few family members refusing to communicate or contact with the PLS. The mean score of overall family burden was 22.25 (SD = 14.90), with 98 % of participants reported moderate or severe burden. A higher level of affiliate stigma was associated with more family burden (b = 7.837, 95CI: 5.240 to 8.747). Affiliate stigma was significantly associated with family daily activities, entertainment activities, family relationship, physical health and mental health of family members, but not family economic burden. ConclusionA higher level of affiliate stigma was associated with more family burden among family with PLS. Anti-stigma intervention of mental illness should be consider not only PLS but also their family members.

Effect of a supportive-educational program, based on COPE model, on quality of life and caregiver burden of family caregivers of heart failure patients: a randomized clinical trial study

BackgroundHeart failure (HF) is one of the most common and spreading diseases worldwide. As HF symptoms progress, it is affected the quality of life and the caregiver burden of the family. The present study aimed to determine the effectiveness of the supportive-educational program, based on the COPE (creativity, optimism, planning and expert advice) care model, on the quality of life and caregiver burden of family caregivers of HF patients.MethodThis clinical trial was conducted on 90 caregivers of HF patients admitted to Isfahan in 2021. The samples were divided into experimental (n = 45 people) and control (n = 45 people) groups based on random allocation (card method). The experimental group received problem-solving skills based on the four components of the COPE model in six sessions during one month. to collect data, the 36-Item Short Form Survey (SF-36) and the Zarit Burden Interview (ZBI) were used in two groups before, after and three months after the intervention.ResultsThere was a significant difference between the experimental and control groups regarding gender, but This confounding factor had no significant effect on the two components of quality of life and caregiver burden. There was a significant difference between the two groups in terms of the mean score of quality of life immediately(75.99),and three months after the intervention (78.78) (P < 0.05) and the mean score of care burden, immediately (16.60) and three months after the intervention (12.73) (P < 0.05).ConclusionsOne of the important duties of nurses is to implement educational-supportive programs for patients after the discharge of patients, These programs are family-oriented remotely for their caregivers.Trial registrationThis study was registered by the Iranian Registry of Clinical Trials with decree code: IRCT20211128053202N1on 2022–02-20.

Caregiver Burden and Its Correlates in Caring for Adults With Epilepsy in a Nigerian Tertiary Hospital: A Cross-Sectional Study

Background Epilepsy is a chronic neurological disorder that imposes a substantial burden on caregivers of patients with the condition. There is a lack of research in sub-Saharan Africa assessing the burden of informal caregiving in epilepsy. Aims This study investigated caregiver burden among carers of people with epilepsy, focusing on its patterns, severity, correlates, and impact on caregiver quality of life. Methods A descriptive cross-sectional study was conducted among 246 adult attendees (patients with epilepsy and their caregivers in a 1:1 ratio) at a neurology outpatient clinic. Patients aged 18 to 65, and their caregivers, who were at least 18 years old, were recruited consecutively. A socio-demographic questionnaire and the National Hospital Seizure Severity Scale assessed demographics and illness severity, respectively. The socio-demographic questionnaire, Zarit Burden Interview, and WHO Quality of Life-Bref scale were used to assess the carers’ demographics, burden of care, and quality of life, respectively. Results The mean burden score was 26.5 ± 13.3. Fifty-three caregivers (43.1%) reported a mild-to-moderate burden, while twenty-one (17.0%) reported moderate-to-severe and severe burdens. Caregiver burden was significantly negatively correlated with carers’ quality of life across almost all domains, with the strongest inverse correlation in the psychological domain (r = -0.4, p = 0.01). There was no statistically significant relationship between caregiver burden and respondents’ demographics or clinical variables, except for the epilepsy severity index of the patients (p = 0.01). Conclusion This study provides valuable insights into the burden of care experienced by family members of individuals with epilepsy, highlighting the negative impact on the caregivers' quality of life. Healthcare providers should focus not only on alleviating the suffering of patients with epilepsy but also consider the well-being of caregivers in their treatment plans.

The burden of care among caregivers: a comparison between home care and palliative care

Introduction: We aimed to determine whether there is a difference in care burden, anxiety, and depression between caregivers of patients living at home and those in the palliative care unit. Methods: The study was cross-sectional in the palliative care and home health units. The study population consisted of 1,879 patients. Different from home care, caregivers in the palliative unit were educated by the nurses on patient care during their stay in the hospital. A total of 186 caregivers were enrolled in the study. Unlike those receiving home care, caregivers of the patients in the palliative care unit received training on patient care while they were in the hospital. The care burden, anxiety, and depression levels of the caregivers in both groups were measured using the Zarit Caregiver Burden and Hospital Anxiety and Depression scales. Results: The mean age of the participants was 51.44±12.11 years. The caregivers' mean burden and anxiety scores were higher in palliative care compared to the homecare group. Both burden and anxiety scores were significantly higher in the palliative care group (p &amp;lt;0.001 and p =0.031, respectively). Conclusion: One of the distinguishing features of patients in the palliative care unit is the opportunity to provide ongoing medical support, social support, and education to the caregivers. However, the interventions at the palliative unit were not enough to compensate for the difference in the burden of care between the two groups.

Relationship between Treatment Burden, Health Literacy, and Medication Adherence in Older Adults Coping with Multiple Chronic Conditions.

A prospective study was conducted to investigate the impact of treatment burden and health literacy on medication adherence among older adults with multiple chronic conditions (MCC) and to explore the potential moderating effects of demographic and clinical factors. Face-to-face structured interviews were conducted among older adults aged 60 and above using the Burden of Treatment Questionnaire (TBQ-15), Short Form Health Literacy Questionnaire (HLS-SF12), and Malaysia Medication Adherence Assessment Tool (MyMAAT). This study included 346 older adults aged 60 years and above with two or more chronic conditions (n = 346). Hypertension (30.2%), hyperlipidemia (24.0%), and diabetes (18.0%) were the most reported chronic conditions among participants. The mean score of treatment burden was 53.4 (SD = 28.2), indicating an acceptable burden of treatment. The mean score of health literacy was 16.4 (SD = 12.6), indicating a limited health literacy level among participants; meanwhile, the mean score of medication adherence was 32.6 (SD = 12.3), indicating medication non-adherence among participants. Medication adherence was significantly correlated with treatment burden (r = -0.22, p < 0.0001), health literacy (r = 0.36, p < 0.0001), number of chronic conditions (r = -0.23, p < 0.0001), and age (r = -0.11, p < 0.05). The study findings emphasize that multimorbid older adults with high treatment burdens and low health literacy are more likely to have poor medication adherence. This underscores the importance for clinicians to address these factors in order to improve medication adherence among older adults with multiple chronic conditions (MCC).

Burden of adult neurofibromatosis 1 questionnaire: translation and psychometric properties of the Persian version

BackgroundThe notion of “burden” has taken a key place in the evaluation of care, particularly in the case of rare diseases. The aim of this study was to evaluate the psychometric properties of the burden of neurofibromatosis 1 questionnaire (BoN) and to determine the perceived disease burden.ResultsThe 15-item BoN was translated into Persian, and no items were removed based on content validity. The adequacy of the sample was acceptable (KMO = 0.902), and Bartlett’s test of sphericity revealed statistically significant results (P < 0.001). Exploratory factor analysis revealed three factors. The reliability of the scale was good (Cronbach’s alpha: 0.90), and the intraclass coefficient was 0.85. The severity of the burden of neurofibromatosis was moderate, and the total mean burden score was 33.12 ± 16.12.ConclusionsThe Persian version of the BoN is an acceptable tool in terms of structure and content, and it specifically assesses the practical aspects of daily activities for patients with neurofibromatosis.

Investigation of Caring Behavior and Caring Burden and Their Associated Factors among Nurses Who Cared for Patients with COVID-19 in East Guilan, the North of Iran.

Nurses experience caring burdens, which can affect their caring behaviors. Caring for highly infectious patients, in particular COVID-19, is a new phenomenon and little is known about it. Considering that caring behaviors can be influenced by various factors and cultural differences of the society, it is necessary to conduct studies about caring behaviors and caring burdens. Thus, this study aimed to determine caring behavior and caring burden and their relationship with some associated factors among nurses who cared for patients with COVID-19. This cross-sectional, descriptive design study was conducted by census sampling on 134 nurses working in public health centers in East Guilan, the north of Iran, in 2021. The research instruments included the Caring Behavior Inventory (CBI-24) and the Caregiver Burden Inventory (CBI). Descriptive and inferential statistics were used to analyze the data using SPSS software version 20 with a significant level of 0.05. The mean score of caring behavior and caring burden in nurses was 126.50 (SD = 13.63) and 43.65 (SD = 25.16), respectively. There was a significant relationship between caring behavior and some demographic characteristics (education, place of living, and history of COVID-19) and between caring burden and some demographic characteristics (housing status, job satisfaction, intention to change job, and history of COVID-19) (p < 0.05). Findings showed that despite the new emergence of COVID-19, the caring burden on nurses was moderate and they had good caring behavior. Despite these results, it is necessary for the relevant managers to pay special attention to protecting health workers during a national crisis such as COVID-19 so that they experience less caring burden and improve caring behavior.

The Effect of the Web-Based Psychosocial Health Promotion Program on the Burden of Care in Family Caregivers of Patients with Chronic Mental Disorders.

Family members of Chronic Mental Disorders (CMD), who are responsible for patient care, face many physical, psychological, and social problems which make them face the burden of care. This study aimed to investigate the effect of a psychosocial health promotion program on the care burden of family caregivers of patients with CMD. This is a quasi-experimental study that was conducted in two intervention and control groups in the form of pretest and posttest. This study was performed on 67 family caregivers of patients with CMD in Farabi and Noor centers in Isfahan, Iran. Participants in this study were randomly divided into two intervention and control groups. Data from the intervention and control groups were collected in two stages, before and after the intervention by demographic information form and Zarit burden questionnaire. The intervention group received a web-based psychosocial health promotion program in eight sessions in 4 weeks. At the end of the intervention, the Zarit questionnaire was completed by the intervention and control groups. The mean score of care burden between the intervention and control groups was not statistically significantly different before the implementation of the program (p = 0.534). But after the intervention, the mean score of care burden was significantly different between the two groups (t65 = 3.43, p = 0.001). This study provides evidence for the benefits of web-based psychosocial health promotion program in reducing the perceived care burden of the caregiver of CMD.

Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study.

This study aimed to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults. This is a cross-sectional study developed with 349 older caregivers who were registered at a Family Health Unit of a city in the state of São Paulo, Brazil. Household interviews were conducted and data were collected on the sociodemographic (profile, family income), clinical (self-reported pain, sleep, frailty), and psychosocial (burden, family functioning, depressive symptoms, stress) characteristics of the caregivers as well as dependence on activities of daily living and cognition in the care recipients. Women predominated in the sample (76.5%) and mean age was 69.5 years. The mean burden score was 18.06 points, with 47.9% above the cutoff of 16 points, denoting excessive burden. The bivariate model revealed associations between burden and financial insufficiency, family dysfunction, difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity among the caregivers as well as worse functional and cognitive performance in the care recipients. The controlled model revealed an association between burden and depressive symptoms (β=16.75; 95%CI 1.80-31.68). We identified an association between burden and depressive symptoms, underscoring the need for the planning and implementation of specific actions directed at caregivers in order to minimize the impact on health and to improve the quality of life.

Relationship between Resilience and Caregiver Burden Among Home Caregivers of COVID-19 Patients.

This study examined caregiver burden among home caregivers of COVID-19 patients and its relationship to resilience. This cross-sectional correlational study was conducted in Mashhad, Iran, in 2020. The sample consisted of 220 family caregivers of COVID-19 patients. The data collection tools included: demographic characteristics, Novak and Guest Caregiver Burden Inventory, and Connor-Davidson Resilience Scale. Data were analyzed with descriptive statistics and correlation test in SPSS v25. The mean score of caregiver burden was 76.85±16.25. In total, 4.5% experienced mild caregiver burden, 31.4% moderate caregiver burden, 50.9% severe caregiver burden, and 13.2% very severe caregiver burden. The mean score of resilience was 62.98±14.06. A significant and inverse relationship was observed between caregiver burden and resilience (p < 0.05, r = -0.46). Family caregivers of COVID-19 patients experienced a significant level of caregiver burden, and it was lower in caregivers with higher levels of resilience. Further studies are recommended in this regard. The use of procedure and training that can improve the resilience of caregivers is recommended to nurses, especially home care nurses.

Caregiving Burdens in Aphasic Dementia and the Relationship to Communication Challenges

AbstractBackgroundPrimary progressive aphasia (PPA) is a clinical dementia syndrome. Impairments in language are the primary and persistent symptom, and severely limit participation in everyday activities and family conversations. PPA is also associated with high caregiving burden. Few studies have examined the relationship between conversation difficulties and caregiving burdens. We tested the hypothesis that the severity of care partner (CP) perceived conversation difficulties predicts caregiving burdens.MethodA mediation analysis focusing on the Baron‐Kenny approach was conducted using baseline data from 78 CPs (62% female) enrolled in the Communication BridgeTM‐2 randomized control trial of a speech‐language intervention for mild to moderate PPA. Measures included the Conversation Difficulties subscale of the Perception of Conversation Index‐Dementia Alzheimer’s Type (PCI‐DAT) and the subscales of Montgomery Burden Interview (MBI), namely objective burden subscale (perceived infringement on tangible aspects of life), subjective demand subscale (perception that the dependent person is overly demanding), and subjective stress subscale (perception of emotional impact). Higher ratings indicate higher burden and greater conversation difficulties.ResultCPs had a mean age of 64.5 years (SD = 10.76), education level of 16.2 years (SD = 2.77), and a relationship duration with the PPA participant of 38.6 years (SD = 15.29). Eighty‐six percent were spouses, 5% were adult children, and 9% were friends or siblings. CPs endorsed a broad range of burden severity with a mean objective burden score of 9.29/30 (Range = 6 to 26; SD = 4.01), subjective demand burden score of 5.81/15 (Range = 5 to 12; SD = 1.41), and subjective stress burden score of 8.43/20 (Range = 5 to 16; SD = 2.72) as well as a range of perceive conversation difficulties (M = 42.34/154, Range = 6 to 105, SD = 22.88). Higher conversation difficulties were associated with higher ratings of caregiving burden for objective burden (p &lt; 0.001) and subjective stress burden (p = 0.010). Significant mediating variables included activities of daily living and CP depression scores.ConclusionThe current study shows an association between both subjective and objective caregiving burden and conversation difficulties. Given this relationship, it will be important to determine whether interventions that successfully address conversation difficulties may also decrease caregiving burden.

Assessment of medication-related burden among a sample of Iraqi patients with systemic lupus erythematosus and its relationship with disease activity: a cross-sectional study

Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with high morbidity and disability. The routines involved in taking medications, side effects, the nature of medicines, difficulties with the healthcare system, and disruptions to social activities all contribute to patients frequently experiencing medication-related burdens (MRB). The current study aimed to assess the perceived MRB among a sample of SLE patients from Iraq and to look for any possible relationship between MRB and disease activity. Methods: The current study was cross-sectional on diagnosed SLE patients who arrived at Baghdad Teaching Hospital/Medical City/Rheumatology department from September 2021 to January 2022. MRB was measured using the Living with Medicines Questionnaire (LMQ). Results: The study recruited 156 SLE patients. The patients were 35.8 ±11.7 years old on average. Great majority of them were women (96.8 %). The average LMQ score was 117.30± 18.37. The results showed that most patients (69.87%) experienced a moderate level of burden, followed by a low level (19.87%), high level (7.69%), and no burden at all (2.56%). No patients experienced an extremely high level of burden (0.0%). The mean burden scores for two LMQ domains—relationships with health care professionals (HCPs) and effectiveness of prescription medications—were the lowest (below average). Conclusions: Many of the SLE patients in this study reported experiencing MRB. Healthcare professionals should implement strategies to reduce this burden, particularly for low-income patients.

Increased histologic inflammation is an independent risk factor for nonconventional dysplasia in ulcerative colitis

Several types of nonconventional dysplasia have been described in inflammatory bowel disease. Hypermucinous, goblet cell-deficient, and crypt cell dysplasias are considered high-risk subtypes, as they often have molecular features of advanced neoplasia (e.g. aneuploidy) and are more frequently associated with advanced neoplasia than conventional dysplasia. This study investigated if increased colonic inflammation is a risk factor for nonconventional dysplasia. A cohort of 125 patients with ulcerative colitis (UC)-associated dysplasia were analyzed and compared with 50 control UC patients without a history of neoplasia. For each patient, all biopsies prior to the initial detection of dysplasia were scored using a 4-point inflammatory activity score. Both mean and maximum scores from all biopsies taken during each colonoscopy were derived. Inflammation burden was calculated by multiplying the average maximum score between each pair of surveillance episodes by length of surveillance interval in years. The average scores of all colonoscopies were used to calculate overall mean, maximum, and inflammation burden scores. In multivariate analyses, higher maximum (odds ratio [OR] 3.4) and inflammation burden (OR 4.2) scores were significantly associated with the detection of dysplasia (P < 0.05). Similarly, higher mean and maximum scores increased the odds of nonconventional dysplasia by 2.7 and 4.9, respectively (P < 0.05). There was a stronger association between these two scores and high-risk subtypes (ORs 4.0 and 7.5, respectively, P < 0.05). The risk of nonconventional dysplasia is significantly associated with increased colonic inflammation, which may contribute to its higher rates of aneuploidy and malignancy.