Subjective Burden Research Articles

Gender-Related Differences in Dry Eye Symptoms Following Involutional Ectropion and Entropion Surgery.

This prospective case-control study investigated gender-related differences in dry eye symptoms following surgery for involutional ectropion and entropion. A total of 109 patients, aged between 65 and 89, were categorized by eyelid condition and gender. Postoperative assessments included the Tear Film Break-Up Time (TBUT) test, Schirmer I test results, corneal and conjunctival staining, eyelid margin characteristics, and scores from the Ocular Surface Disease Index (OSDI) questionnaire. The analysis revealed notable gender-related differences in dry eye manifestations. Initially, men exhibited lower TBUT scores but higher Schirmer test readings compared to women; however, these disparities diminished over time. No significant gender differences were detected in corneal and conjunctival staining, indicating similar levels of ocular surface damage across genders. Males showed significantly higher values in several eyelid margin characteristics (LMI, LMT) at various postoperative time points. According to the OSDI questionnaire, women experienced more severe symptoms of dry eye both pre- and post-operatively, suggesting a greater subjective symptom burden. When comparing surgical outcomes for ectropion and entropion, both conditions showed improvement in eyelid positioning and dry eye symptoms post-surgery. Despite these improvements, women with either condition reported more severe dry eye symptoms compared to men throughout the postoperative period. This study highlights the gender-specific variations in dry eye symptoms following eyelid malformation surgery and emphasizes the importance of adopting gender-sensitive approaches in postoperative care to improve outcomes and ocular health.

Feeling hot is being hot? Comparing the mapping and the surveying paradigm for urban heat vulnerability in Vienna

With rising global temperatures, cities increasingly need to identify populations or areas that are vulnerable to urban heat waves; however, vulnerability assessments may run into ecological fallacy if data from different scales are misconstrued as equivalent. We assess the heat vulnerability of 1983 residents in Vienna by measuring heat impacts, exposure, sensitivity and adaptive capacity with mirrored indicators in the mapping paradigm (i.e. census tract data referring to the geographic regions where these residents live) and the surveying paradigm (i.e. survey data referring to the residents' individual households). Results obtained in both paradigms diverge substantially: meteorological indicators of hot days and tropical nights are virtually unrelated to self-reported heat strain. Meteorological indicators are explained by mapping indicators (R2 of 15–40 %), but mostly not by surveying indicators. Vice versa, experienced heat stress and subjective heat burden are mostly unassociated with mapping indicators but are partially explained by surveying indicators (R2 of 2–4 %). The results suggest that the two paradigms do not capture the same components of vulnerability; this challenges whether studies conducted in the respective paradigms can complement and cross-validate each other. Policy interventions should first define which heat vulnerability outcome they target and then apply the paradigm that best captures the specific drivers of this outcome.

An optimal threshold for over-indebtedness: a study on the discrepancy between subjective and objective debt burdens

PurposeThe study aims to explore the discrepancy between the subjective and objective debt burdens across various household socio-demographic and debt characteristics. Additionally, it seeks to establish an optimal debt service-to-income ratio (DSTI) threshold for identifying over-indebtedness.Design/methodology/approachThis study utilized a sample of 1,004 respondents from a nationwide survey conducted among Polish indebted households. A discrepancy ratio (DR) measure was proposed to evaluate the divergence between subjective and objective over-indebtedness. Binary logistic regression was employed to estimate the probability of being subjectively and objectively over-indebted, as well as the discrepancy between the two measures of over-indebtedness. The study also employed numerical simulations to determine the optimal DSTI threshold for identifying over-indebted households in general and based on their socio-economic characteristics.FindingsThe study established a debt service-to-income ratio (DSTI) threshold of 20% to minimize the discrepancy between subjective and objective debt burden, which is lower than thresholds found in other studies aimed at identifying over-indebted households. Age, number of loans, self-perceived needs satisfaction and type of debt were identified as significant socio-economic and debt-related determinants of over-indebtedness. Household socio-economic and debt-related characteristics significantly influence the threshold for identifying over-indebtedness using DSTI. It can vary widely, ranging from as low as 11% for well-educated women with multiple loan commitments to 43.7% for young males with vocational education, high incomes and originating from households with four or more members.Originality/valueThe paper proposes a more comprehensive approach to debt burden analysis by introducing a new methodology for determining a debt service-to-income (DSTI) threshold that could serve as a measure of over-indebtedness based on the discrepancy between subjective and objective over-indebtedness. It also emphasizes the significance of socio-economic and debt-related factors in evaluating subjective and objective over-indebtedness.

Characterizing the mental health concerns of significant others of those with Borderline Personality Disorder (BPD) and how BPD impacts them

Introduction: Borderline personality disorder (BPD) is a serious psychiatric condition characterized by emotional, interpersonal, and behavioral dysregulation. Significant others (SOs: family member, romantic partner, friend) of those with BPD also endorse elevated mental health concerns. The general severity of BPD symptoms, and/or severity of specific BPD dysregulation components (i.e., emotional, interpersonal, or behavioral) may uniquely influence distinct SO mental health concerns. However, which specific mental health concerns are experienced by SOs of those with BPD, and whether and how BPD influences them, remains unknown. This study therefore aimed to: (1) characterize the mental health concerns (i.e., depression, anxiety, trauma exposure and posttraumatic stress disorder, objective and subjective burden, behavioral dysregulation) of SOs of those with BPD; and (2) clarify whether and how overall BPD symptom severity, and specific BPD dysregulation components, are associated with these SO mental health concerns. Methods: SOs of those with BPD (N = 46) completed measures of mental health concerns, and informant-reports of their loved one with BPD's symptom severity at baseline, 1-, and 2-month follow-ups. Results: SOs exhibited low psychopathology across all mental health concerns, except anxiety severity, which was moderate. Higher overall BPD symptom severity, emotion dysregulation, and behavioral dysregulation, but not interpersonal dysregulation, in the person with BPD predicted worse SO mental health concerns. Discussion: Behavioral and emotional BPD symptom domains may be particularly deleterious to SO mental health, and BPD treatment providers may wish to consider referrals for SO mental healthcare in such instances.

Evidence-based and Patient-centered Indication for Knee Arthroplasty - Update of the Guideline.

Knee arthroplasty is one of the most frequently performed operations in Germany, with approximately 170000 procedures per year. It is therefore essential that physicians should adhere to an appropriate, and patient-centered indication process. The updated guideline indication criteria for knee arthroplasty (EKIT-Knee) contain recommendations, which are based on current evidence and agreed upon by a broad consensus panel. For practical use, the checklist has also been updated.For this guideline update, a systematic literature research was conducted in order to analyse (inter-)national guidelines and systematic reviews focusing on osteoarthritis of the knee and knee arthroplasty, to answer clinically relevant questions on diagnostic, predictors of outcome, risk factors and contraindications.Knee arthroplasty should solely be performed in patients with radiologically proven moderate or severe osteoarthritis of the knee (Kellgren-Lawrence grade 3 or 4), after previous non-surgical treatment for at least three months, in patients with high subjective burden with regard to knee-related complaints and after exclusion of possible contraindications (infection, comorbidities, BMI ≥40kg/m2). Modifiable risk factors (such as smoking, diabetes mellitus, anaemia) should be addressed and optimised in advance. After meeting current guideline indications, a shared decision-making process between patients and surgeons is recommended, in order to maintain high quality surgical management of patients with osteoarthritis of the knee.The update of the S2k-guideline was expanded to include unicondylar knee arthroplasty, the preoperative optimisation of modifiable risk factors was added and the main indication criteria were specified.

The Burden and Psychological Distress of Family Caregivers of Individuals with Autism Spectrum Disorder: A Gender Approach.

Background/Objectives: Relatives play the main role as caregivers of autism spectrum disorder (ASD) individuals. Women, specifically mothers, are the majority of caregivers of ASD relatives. In addition, the literature on caregivers has shown that women have worse mental health and higher perceived burdens than men. Therefore, the aim of this work was to evaluate the relationships between psychological distress and burden using a gender approach in caregivers of ASD relatives. Methods: A cross-sectional design was applied in this study with a convenience sample of 250 caregivers of ASD relatives. Most of them were mothers caring for a child who ranged in age from 1 to 31 years. Sociodemographic variables considered were age, education level, marital status, and relation to the care recipient. Additionally, psychological distress and objective burden, in the form of hours/day caring, and subjective burden, in the form of perceived burden, were analyzed. Results: Significant gender differences were found in psychological distress and objective and subjective burden, with women showing higher scores than men. Both types of burden played a serial mediating role between gender and psychological distress. Conclusions: The results highlight the important role of gender, with women bearing the high cost of caring for their children with ASD in the form of high objective burden, caring for more hours, and subjective burden, perceiving more burden and showing poorer mental health than men. These results show the need for specific support and intervention programs targeted to women caregivers to reduce burden and improve their mental health.

The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden.

The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.

Mental health outcomes of family carers after admission to aged care: A cross-sectional survey study.

This study investigated the predictors of poor mental health outcomes among family carers of residents after transitioning into residential aged care. Using a cross-sectional design, five groups of variables were evaluated as predictors: caregiver demographics; caregiving load; resident-related variables; loneliness and visiting frequency; and the impact of the COVID-19 context. A total of 309 primary family contacts of all residents of two residential aged care organisations in the state of Victoria (Australia) participated in the study (response rate 19%). The K-10 and the Burden Scale for Family Caregivers were used to measure the primary outcomes. We compared psychological distress and burden outcomes between carers whose relative was admitted within the last 12 months, or longer than 12 months ago. Time since admission (<12 months or >12 months) did not affect the level of psychological distress (t (238) = -.08, p = .94) or subjective burden (t (245) = -.89, p = .38). Being a woman, a spouse, speaking a language other than English at home, being less satisfied with the support offered by the facility, not feeling supported in the decision to admit their relative, being lonely and providing higher levels of care preadmission were predictors of poor mental health outcomes. Older women with low-English proficiency who were primary carers and are socially isolated, are more likely to experience poor mental health outcomes and need additional support. These findings may inform the development of screening tools and tailored interventions to support this population during and after the transition process.

Awareness and cognitive rehabilitation in Alzheimer's disease and frontotemporal dementia.

Awareness influences the evolution of neurodegenerative dementias. We gathered participants' and caregivers assessments of dependence in daily activities and we studied how each score would be related to next year participant autonomy, independently of other explicative variables. We retrospectively analyzed data from mildly demented participants with a clinical diagnosis of Alzheimer's disease (AD, n = 186) and frontotemporal dementia (FTD, n = 29) and their relatives. A research tool was used to assess participant dependence in 98 daily activities and associated caregiver burden. A discrepancy score between the patient's and relative's judgment was calculated to evaluate awareness of dependence in activities at baseline. This dependence scores, as well as sex, age, education, and 1 year difference in Mini-Mental State Examination were taken as possible explicative variables for dependence in activities adapted by therapists during a 1-year cognitive rehabilitation program. Patients with FTD showed less awareness for daily dependence (discrepancy 20.9% vs. 11.8% in AD). Both groups benefited from cognitive rehabilitation (25% decrease in dependence) and subjective burden of relatives was decreased in both groups. In the AD group, there was a significant positive relationship between both caregiver (P < 0.001) and participant's (P < 0.02) evaluation of dependence in daily activities at inclusion and dependence of participants in adapted activities after 1 year. Awareness of impairment in daily activities is a clinical symptom that is more important at inclusion in FTD than in AD. However, in participants with AD who, as a group, significantly benefit from a cognitive rehabilitation program, not only caregiver's but also participant's assessment of dependence at baseline is correlated to subsequent, next year greater dependence in daily activities adapted by the therapists. Although discrepant, both caregiver and participant evaluations appear to be important variables to understand the evolution and the benefit of care in participants at early stages of dementia.

Predictors of Burden for First-Ever Stroke Survivor's Long-Term Caregivers: A Study of KOSCO.

Long-term changes in caregiver burden should be clarified considering that extended post-stroke disability can increase caregiver stress. We assessed long-term changes in caregiver burden severity and its predictors. This study was a retrospective analysis of the Korean Stroke Cohort for Functioning and Rehabilitation. Patients with an acute first-ever stroke were enrolled from August 2012 to May 2015. Data were collected at 6 months and 6 years after stroke onset. The caregiver burden was measured with a subjective caregiver burden questionnaire based on the Korean version of the Caregiver Burden Inventory. The caregivers' characteristics and patients' clinical and functional status were also examined at each follow-up. A high caregiver burden, which suggests a risk of burnout, was reported by 37.9% and 51.7% of caregivers at 6 months and 6 years post-stroke, respectively. Both the caregiver burden total score and proportion of caregivers at risk of burnout did not decrease between 6 months and 6 years. The patients' disability (OR = 11.60; 95% CI 1.58-85.08; p = 0.016), caregivers' self-rated stress (OR = 0.03; 95% CI 0.00-0.47; p = 0.013), and caregivers' quality of life (OR = 0.76; 95% CI 0.59-0.99; p = 0.042) were burden predictors at 6 months. At 6 years, only the patients' disability (OR = 5.88; 95% CI 2.19-15.82; p < 0.001) and caregivers' psychosocial stress (OR = 1.26; 95% CI 1.10-1.44; p = 0.001) showed significance. Nearly half of the caregivers were at risk of burnout, which lasted for 6 years after stroke onset. The patients' disability and caregivers' stress were burden predictors in both subacute and chronic phases of stroke. The findings suggest that consistent interventions, such as emotional support or counseling on stress relief strategies for caregivers of stroke survivors, may reduce caregiver burden. Further research is needed to establish specific strategies appropriate for Korean caregivers to alleviate their burden in caring for stroke patients.

Financial burden of medicines in five Northern European countries: A decommodification perspective

Affordable access to healthcare including medicines is a key social policy goal in Europe. However, it has rarely been addressed in comparative social policy research. Although the concept of decommodification has already been used in the context of healthcare and sickness benefits, we argue that the scope of such studies should be expanded to medicines to understand how welfare states protect their citizens from market forces in case of illness. We examine and compare the relationship between income, other characteristics, and subjective financial burden of medicines (FBM) across five countries with universal health systems pursuing egalitarian aims (Denmark, Finland, the Netherlands, Norway and Sweden). Analyses using 2017 EU-SILC microdata and linear probability models showed large differences in the level of FBM across countries, with the highest income quintile in Finland reporting FBM more frequently than the lowest income quintile in Denmark. Finland differed from the rest by increasing probability of FBM with age. In other countries, middle-aged adults tended to be the most affected, and older adults were well-protected. The association between income and FBM was strongest in the Netherlands; however, the higher probability of FBM was skewed towards the lower quintiles in all countries. FBM and financial burden of medical care were strongly associated although FBM tended to be more common. Unmet needs for medical examination were rare and lacked sensitivity in capturing manifestations of market risk. Decommodification literature has focused healthcare services as proxy of access; nevertheless, our study shows that further functions, and broader outcomes should be examined to capture market risk. Our evidence further highlights that important differences can be found even in countries with relatively similar health policy aims. The cost of medicines should be considered in comparative studies of health and welfare states.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

A Checklist to Aid in Identifying Patients with Atopic Dermatitis Who are Candidates for Systemic Therapy

Introduction: The decision to initiate systemic therapy (ST) in patients with atopic dermatitis (AD) is complex, with no criteria that are globally agreed upon. To aid dermatology providers in this decision-making, the “When to Start Systemic Therapy Checklist” was developed. The checklist comprises three components: (A) clinical severity, (B) subjective burden, and (C) lack of treatment response, each with several criteria. Systemic therapy is indicated when at least one criterion in each component is fulfilled. To corroborate the validity of this checklist, we evaluated the agreement between the decision to initiate ST using the checklist, against the reference, CorEvitas AD Registry patients prescribed a ST. Methods: Adults with moderate-to-severe AD from the prospective, longitudinal CorEvitas AD registry were included in this descriptive analysis (July 2020 – August 2023). Patients were included if they were initiating ST at enrollment (ST group) or not initiating ST at enrollment (non-ST group) but had vIGA-AD® ≥3 and Eczema Area Severity Index ≥12. The checklist criteria were compared against registry outcome measures; when a criterion did not match a measure, either a proxy measure was selected or that part of the questionnaire was excluded. Overall percentage agreement (accord between checklist criteria and ST initiation status [reference standard]) with corresponding 95% confidence intervals (CIs) was calculated. Results: In the ST group (n=1488), 97.0% of patients met at least one criterion from section A, 94.1% from section B, and 92.1% for either section A or B. In the non-ST group (n=208), 100% of patients met at least one criterion from section A, 92.3% from section B, and 92.3% from either section A or B. Among patients in the ST group who met at least one criterion each from section A and B, overall percentage agreement was 81.7% (95% CI: 79.8%, 83.5%). Section C, which addresses “lack of treatment response” could not be evaluated due to the absence of relevant data in the registry. Discussion: Nearly all patients initiating ST met at least one criterion from both section A and B of the “When to Start Systemic Therapy Checklist”, demonstrating a strong alignment between the checklist sections A and B and disease burden of AD patients in the registry. Subsequent research is needed to assess section C due to registry limitations. Future analyses should examine why some patients with high disease burden and severity remain untreated with systemics.

Energy vulnerability of detached home owners in Finland: An explorative study

Vulnerability to energy poverty occurs when a household has difficulties to meet adequate energy service levels. Recent energy crises manifested the consequences of energy vulnerability also in the Nordic countries. This study brings evidence on energy poverty in Finland, using a large household energy survey dataset (N = 4,295). The ten-per-cent limit threshold is used to measure objective energy vulnerability and the subjective measure is based on the regularity of households’ self-assessed psychological burden regarding their energy expenditures. In our dataset, 18 % of households in detached and semi-detached houses were objectively energy poor and 27 % felt a regular energy-cost burden. Heating type, building age, education level and gender were significant determinants. Ownership of a ground-source heat pump and usage of solid wood reduces winter energy poverty in Finland. Women, particularly in older age groups were significantly more vulnerable than men. For some groups, objective and subjective measurement produced distinctively different results. Households using oil heating in a hybrid heating arrangement were more vulnerable in the objective measurement but they did not feel a similar subjective energy cost burden. Families with children felt subjectively more burdened by their energy expenses than other groups, but they were not more energy-poor along the objective measurement. This is one of the first energy vulnerability studies based on large amount of citizen survey data in Finland and we recommend that further research focuses particularly on how different social groups can access and use different heating installations as this is a key determinant of energy vulnerability in countries with substantial domestic heating energy needs.

Urinary bother, Urinalysis, and Two-Year Efficacy Follow-Up Results of Phase I Trial of Intravesical Bacillus Calmette-Guérin Combined with Intravenous Pembrolizumab in Recurrent or Persistent High-Grade Non-Muscle-Invasive Bladder Cancer after Previous Bacillus Calmette-Guérin Treatment

ObjectiveTo report urinary bother, urinalysis changes, disease-free survival (DFS), and overall survival (OS) over 2 years for subjects enrolled in a phase I dose-escalation trial (NCT02324582) of intravesical Bacillus Calmette-Guérin (BCG) in combination with systemic pembrolizumab for recurrent or persistent high-grade non-muscle invasive bladder cancer (HGNMIBC). MethodsEighteen patients consented to the study. Five were screen failures. Clinical activity was determined using cystoscopy and cytology with a biopsy of suspicious lesions. Urinalysis and International Prostate symptom score were assessed at pre-treatment, Week 10 (during combined BCG and pembrolizumab treatment), and 3 and 6 months from treatment completion. IPSS was analyzed using a mixed-model repeated measures analysis. A Chi-square test was used to compare urinalysis results at each interval. ResultsThe pathologic disease stage after restaging transurethral resection and before treatment was pTa in 6 (46.2%), CIS in 6 (46.2%), and pT1 in 1 (7.7%). There was no increase in reported urinary bother throughout treatment. Quality of life measurements demonstrated no change in subjective burden. On urinalysis, we did not observe significant differences at 3 months compared to baseline evaluation. At 12 months, the DFS and OS were 69.23% and 92.31%, respectively. At 24 months, the DFS and OS were 38.46% and 92.31%, respectively. ConclusionsTreatment with BCG combined with intravenous pembrolizumab is not showing increased urinary bother or adverse urinalysis changes. Two-year response data is promising and await confirmation in the phase III study (Keynote 676)

Adaptation of a psycho-educational group programme to improve coping in dementia caregiving: a feasibility study with mixed-methods.

As the number of people living with dementia rapidly increases worldwide, the support provided by their informal caregivers remains key to the sustainability of most healthcare systems, this voluntary contribution representing 40% of the costs of dementia worldwide. Informal caregiving in dementia, however, is linked to long periods of chronic stress with frequent and serious negative consequences on the health and quality of life of the caregiver. A psycho-educational group intervention focusing on coping with the daily stress of dementia caregiving ("Learning to feel better… to help better"), developed in French-speaking Canada and showing broad effects on quality of life, was selected with the aim of 1) adapting it to a new cultural context (French-speaking Switzerland) based on identified facilitators and barriers, using a participative approach; and 2) conducting a feasibility study to evaluate whether the adapted programme showed similar or improved feasibility and effects compared to the original Canadian programme. A mixed-methods concurrent nested design was used to evaluate the feasibility and the effects on five quantitative core outcomes. Additional qualitative data helped document in depth the acceptability and impact of the intervention. We shortened the programme from 30 to 21h in total, which resulted in increased accessibility, in terms of facilitated recruitment of participants and inclusion of a broader range of informal caregivers. There were significant reductions in subjective burden (effect size: d = -0.32) and psychological distress (d = -0.48), as well as decreases in the stress reactions of informal caregivers related to the behaviour problems of the persons with dementia (d = -0.57). The qualitative results emphasized the usefulness of providing informal caregivers with structured procedures for efficiently tackling everyday challenges, and of enabling learning through a variety of channels and activities. Substantial improvements are associated with this 21-h group intervention, organised in 7 sessions of 3h each, focused on learning more efficient strategies to cope with the daily stress of dementia caregiving. This intervention empowered informal caregivers to master their daily challenges with more confidence, satisfaction and calm. ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Long-term burden of informal caregiver 7-years after severe childhood traumatic brain injury in the traumatisme grave de l’Enfant (TGE) study

ABSTRACT Objective To investigate reported burden by the Primary Family Caregiver (PFC) 7-years after severe pediatric traumatic brain injury in the TGE (Traumatisme Grave de l’Enfant) longitudinal study. Methods Subjective burden was estimated with the Zarit Burden Inventory (ZBI) in 36 PFC (parents), who rated their own health status (Medical Outcome Study Short Form-12), family functioning and their child’s level of care and needs (Pediatric/Adult Care And Needs Scale [PCANS/CANS]). Data collection included: child and PFC sociodemographic characteristics, injury-related factors, ‘objective’ (e.g. overall level of disability: Glasgow Outcome Scale – Extended, GOS-E/GOS-E-Peds) and ‘subjective’ outcomes (e.g. participation, behavior, executive functions, quality of life and fatigue). Results 25% of PFC reported mild-moderate burden, and 19% moderate-severe burden. Higher burden correlated with worse outcomes in all ‘subjective’ PFC-rated outcomes, and with self-reported participation. The ZBI correlated strongly with CANS/PCANS and GOS-E/GOS-E-Peds. Overall level of disability and PFC-reported executive functioning explained 62% of the ZBI variance. For equal levels of disability, burden was higher when PFC reported a ‘negative’ picture of their child. Conclusion Significant PFC-reported burden 7-years post-injury was associated with overall disability and ‘subjective’ PFC-rated outcomes. Factors influencing parental burden in the long term should be identified and psychological support implemented over time.

Gender Differences in Adults With Chronic Rhinosinusitis: A Scoping Review.

Gender differences in chronic rhinosinusitis (CRS) have been demonstrated in many studies over the last 15 years. The purpose of this scoping review is to investigate the current knowledge on gender differences in CRS and to analyze the gaps in the literature. A systematic search of PubMed, Cochrane Library, and Embase databases was performed. This scoping review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. Studies that evaluated gender differences in CRS were included in the review. Of the 523 abstracts reviewed, a total of 23 studies met the criteria for inclusion. Articles consisted of retrospective and prospective cohort studies. They were divided into 3 categories based on whether they evaluated gender differences in (1) presentation and baseline quality of life, (2) pathophysiology, and/or (3) outcomes of treatment. Eleven studies addressed differences in presentation, 5 addressed differences in pathophysiology, and 10 dealt with differences in outcomes after surgical or medical management. Most of the studies showed worse baseline QoL secondary to CRS in women, with outcome of treatment being similar in both genders. The experience of CRS appears to vary between genders, with women experiencing a greater subjective burden of disease than men, though with similar outcomes after treatment. Further research is indicated, particularly involving the pathophysiology of CRS, to fully understand the underlying causes of these discrepancies.

Need for Care in Old Age: Characterization of Informal Caregivers and the Care Situation with Regard to Care Levels in Home Care

In Germany, people in need of care can be supported by benefits from care insurance. Prerequisite is an official assessment of the need for care, which is carried out by assigning care levels (1 to 5) according to the Second Care Strengthening Act. One of the reasons for introducing care levels was to pay more attention to the needs of people with dementia. In this article, characterization of care levels were based on characteristics of care recipients, their relatives, and the care situation. The aim was to map the current state of health care and providing practical suggestions to improve health care. Data was collected as part of the cross-sectional study "Benefits of being a caregiver" by a written survey of informal caregivers throughout Bavaria on aspects of the caregiving situation as well as on current and desired future use of 15 care services. To compare care levels, group differences were analyzed using χ2-tests and one-factor analysis of variance. The effect size measures odds ratio and Cohen's d were reported for significant group differences comparing care levels 1 and 4. The sample consisted of 958 cases of people in need of care aged 65 and above. The proportion of people with dementia increased significantly with care level. For informal caregivers, subjective burden, functional coping strategies, and the caregiving motive of not wanting to place the care recipient in a nursing home increased with care level. Informal caregivers of those with higher care levels spent significantly more time on supporting activities of daily living and supervision; they received more informal help, and more often lived together with the care recipient in a household. For 9 of the 15 care services surveyed (e. g. 24-h care), current use increased significantly with increasing care level. However, we recorded a low overall utilization rate of care services across all care levels (M=2.20; SD=1.90). As a result of the Second Care Strengthening Act, people with dementia get good access to care insurance benefits. The increasing amount of time required for assisting in activities of daily living and supervision is reflected by care levels. Despite the increasing caregiving burden, care services are rarely used. Therefore, we recommend that measures to increase the use of support and counselling services be expanded.

Sleep and Caregiver Burden Among Caregivers of Persons Living With Dementia: A Scoping Review.

Caregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep. We conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized. The search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain. Although subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.