Proxy Assessment Research Articles

Delineating Care Recipient Burden Constructs: Development and Validation of the CARE-2B Scale for Care Recipient Self-Perceived Burden and Proxy Assessment of Caregiver Burden.

Care Recipient Self-Perceived Burden (CR-SPB) to Caregivers is an important but overlooked aspect within the caregiver-care recipient relationship. This study aimed to 1) develop and validate the CARE-2B (Care Recipient's Two Burden) Scale, assessing both CR-SPB and their proxy assessment of caregiver burden (Proxy-CB); 2) examine whether the CR-SPB and Proxy-CB differ from caregiver burden's own assessment and other health and social care constructs. Data were collected from 504 caregiver-care recipient dyads in the US using an online panel between August 2022 and February 2023. Care recipients completed the CARE-2B Scale, which includes two subscales: their self-perceived burden (CR-SPB) and their proxy assessment of caregiver burden (Proxy-CB). Care recipients also completed measures related to health, well-being: SPB-scale, EQ-5D-5L, and EQ-HWB. Caregivers completed CarerQoL and ASCOT-Carer. Psychometric analysis included exploratory and confirmatory factor analysis, item response theory (IRT), and construct validity. CR-SPB correlated strongly with the SPB-Scale (r=0.73), while Proxy-CB correlated more strongly with caregiver-reported burden (r=0.61). Both CR-SPB and Proxy-CB items demonstrated good discrimination and information coverage in IRT analysis. EFA further supported the distinctiveness of CR-SPB and Proxy-CB, with CR-SPB items loading on a separate factor from caregiver burden and health constructs, while Proxy-CB aligned with caregiver-reported burden. The CARE-2B Scale innovatively assesses both CR-SPB and Proxy-CB from the care recipient's perspective, providing new insights into the caregiving relationship. This dual-perspective measure has implications for enhancing care strategies for individuals with chronic conditions or disabilities and their caregivers.

Injury to the palmar supporting structures of the fetlock alters limb stiffness and fetlock angle.

In vivo measurement of limb stiffness and conformation provides a non-invasive proxy assessment of superficial digital flexor tendon (SDFT) and suspensory ligament (SL) function. Here, we compared it in fore and hindlimbs and after injury. To compare the limb stiffness and conformation in forelimbs and hindlimbs, changes with age, and following injury to the SDFT and SL. Retrospective cohort study. Limb stiffness was calculated using floor scales and an electrogoniometer taped to the dorsal fetlock. The fetlock angle and weight were simultaneously recorded five times with the limb weight-bearing and when the opposite limb was picked up (increased load). Limb stiffness of both limbs was calculated from the gradient of the regression line of angle versus load. Fetlock angle when the weight was zero was extrapolated from the graph and used as a measure of conformation. Limb stiffness was measured in uninjured forelimbs (n = 42 limbs), hindlimbs (n = 19 limbs), forelimbs with SDFT injury (n = 18) and hindlimbs with SL injury (n = 5). Limb stiffness correlated with weight in forelimbs as shown previously (p < 0.001) but also in hindlimbs (p = 0.006). When normalised to the horse's weight (503 kg, IQR 471.5-560), forelimb stiffness was significantly higher (22.3 [±4.5] × 10-3 degree-1) than for the hindlimb (16.4 [±4.0] × 10-3 degree-1; p < 0.001). While there were no significant differences between forelimb and hindlimb conformation in unaffected or SDFT injury, both limb stiffness and conformation was significantly greater in limbs with SL injury (p = 0.009 and p = 0.002, respectively). Small sample size, lack of clinical data including lameness and quantification of injuries. Injury to the forelimb SDFT does not alter limb stiffness or conformation in the long-term, while hindlimb SL injury simultaneously increases limb stiffness and fetlock angle, suggesting an increase in SL length following injury.

Association of Gum Treatment with Cognitive Decline and Dementia Risk among Older Adults with Periodontal Symptoms: A 12-Year Prospective Cohort Study.

This study examines the associations of gum treatment with cognitive decline and dementia risk among older adults with periodontal symptoms in the USA. A cohort of 866 adults aged ≥50 with periodontal symptoms was recruited for the 2008 Health and Retirement Study "Dental Health Experimental Module" and followed until 2020. Cognitive function was assessed with the Telephone Interview for Cognitive Status (TICS). Dementia status was ascertained with the Langa-Weir algorithm based on TICS scores and proxy assessments. Linear mixed-effects model and multivariable Cox regression models were utilized to analyze the associations of gum treatment with cognitive decline and the risk of dementia, respectively. Of 866 participants (mean age 67.7, 61.4% women), 105 (12.1%) developed dementia with a median follow-up of 9 (IQR, 6-10) years. The dementia incidence rates were lower in the group with gum treatment (7.4 vs. 12.9 per 1,000 person-years). Compared with participants who did not have gum treatment, those with gum treatment experienced a decline in TICS score that was on average 0.025 (95% CI, 0.005-0.044) points less per year and a 38% lower incidence of dementia (hazard ratio, 0.62; 95% CI, 0.41-0.93). These associations were consistent across participants with a different severity of periodontal symptoms and sociodemographic characteristics (age, sex, race, ethnicity, and education) except for income levels. Prompt gum treatment for older adults with periodontal symptoms may be beneficial for their cognitive health.

Association of Childhood Exposure to School Racial Segregation with Late-Life Cognitive Outcomes among Older Americans.

Disparities in cognition, including dementia occurrence, persist between White and Black older adults, and are possibly influenced by early educational differences stemming from structural racism. However, the relationship between school racial segregation and later-life cognition remains underexplored. To investigate the association between childhood contextual exposure to school racial segregation and cognitive outcomes in later life. Data from 16,625 non-Hispanic White (hereafter, White) and 3,335 non-Hispanic Black (hereafter, Black) Americans aged 65 or older were analyzed from the Health and Retirement Study. State-level White-Black dissimilarity index for public elementary schools in the late 1960s (range: 0-100) was used to measure school segregation. States were categorized into high segregation (383.6) and low segregation (<83.6) based on the top quintile. Cognitive scores, cognitive impairment (with or without dementia), and dementia were assessed using the Telephone Interview for Cognitive Status (TICS) and proxy assessment. Multilevel regression analyses were conducted, adjusting for demographic covariates, socioeconomic status, and health factors. Stratified analyses by race were performed. The mean (SD) age of participants was 78.5 (5.7) years, and 11,208 (56.2%) were female. Participants exposed to high segregation exhibited lower cognitive scores (12.6 vs. 13.6; P<0.001) and higher prevalence of cognitive impairment (50.8% vs 41.4%; P<0.001) and dementia (26.0% vs. 19.5%; P<0.001), compared to those with low segregation exposure. Multilevel analyses revealed a significant negative association between school segregation and later-life cognitive even after adjusting sequentially for potential confounders, and these associations were stronger among Black than White participants. Notably, in the fully adjusted model, Black participants exposed to high segregation displayed significantly lower cognitive scores (-0.51; 95% CI: -0.94, -0.09) and higher likelihood of cognitive impairment (adjusted Odds Ratio [aOR]: 1.45, 95% CI: 1.22, 1.72) and dementia (aOR: 1.31, 95% CI: 1.06, 1.63). Our study underscores that childhood exposure to state-level school segregation is associated with late-life cognition, especially for Black Americans. Given the rising trend of school segregation in the US, educational policies aimed at reducing segregation are crucial to address health inequities. Clinicians can leverage patients' early-life educational circumstances to promote screening, prevention, and management of cognitive disorders.

Global Trends of Medical Misadventures Using International Classification of Diseases, Tenth Revision Cluster Y62-Y69 Comparing Pre-, Intra-, and Post-COVID-19 Pandemic Phases: Protocol for a Retrospective Analysis Using the TriNetX Platform.

The COVID-19 pandemic has sharpened the focus on health care safety and quality, underscoring the importance of using standardized metrics such as the International Classification of Diseases, Tenth Revision (ICD-10). In this regard, the ICD-10 cluster Y62-Y69 serves as a proxy assessment of safety and quality in health care systems, allowing researchers to evaluate medical misadventures. Thus far, extensive research and reports support the need for more attention to safety and quality in health care. The study aims to leverage the pandemic's unique challenges to explore health care safety and quality trends during prepandemic, intrapandemic, and postpandemic phases, using the ICD-10 cluster Y62-Y69 as a key tool for their evaluation. This research aims to perform a comprehensive retrospective analysis of incidence rates associated with ICD-10 cluster Y62-Y69, capturing both linear and nonlinear trends across prepandemic, intrapandemic, and postpandemic phases over an 8-year span. Therefore, it seeks to understand how these trends inform health care safety and quality improvements, policy, and future research. This study uses the extensive data available through the TriNetX platform, using an observational, retrospective design and applying curve-fitting analyses and quadratic models to comprehend the relationships between incidence rates over an 8-year span (from 2015 to 2023). These techniques will enable the identification of nuanced trends in the data, facilitating a deeper understanding of the impacts of the COVID-19 pandemic on medical misadventures. The anticipated results aim to outline complex patterns in health care safety and quality during the COVID-19 pandemic, using global real-world data for robust and generalizable conclusions. This study will explore significant shifts in health care practices and outcomes, with a special focus on geographical variations and key clinical conditions in cardiovascular and oncological care, ensuring a comprehensive analysis of the pandemic's impact across different regions and medical fields. This study is currently in the data collection phase, with funding secured in November 2023 through the Ricerca Corrente scheme of the Italian Ministry of Health. Data collection via the TriNetX platform is anticipated to be completed in May 2024, covering an 8-year period from January 2015 to December 2023. This dataset spans pre-pandemic, intra-pandemic, and early post-pandemic phases, enabling a comprehensive analysis of trends in medical misadventures using the ICD-10 cluster Y62-Y69. The final analytics are anticipated to be completed by June 2024. The study's findings aim to provide actionable insights for enhancing healthcare safety and quality, reflecting on the pandemic's transformative impact on global healthcare systems. This study is anticipated to contribute significantly to health care safety and quality literature. It will provide actionable insights for health care professionals, policy makers, and researchers. It will highlight critical areas for intervention and funding to enhance health care safety and quality globally by examining the incidence rates of medical misadventures before, during, and after the pandemic. In addition, the use of global real-world data enhances the study's strength by providing a practical view of health care safety and quality, paving the way for initiatives that are informed by data and tailored to specific contexts worldwide. This approach ensures the findings are applicable and actionable across different health care settings, contributing significantly to the global understanding and improvement of health care safety and quality. PRR1-10.2196/54838.

Reliability and validity of the Chinese revised version of the pectus excavatum evaluation questionnaire in children with pectus excavatum

ObjectiveThis study aims to translate the Pectus Excavatum Evaluation Questionnaire(PEEQ) into Chinese, and to comprehensively assess subjective outcomes in quality of life of children with pectus excavatum.MethodsThe PEEQ was translated from English to Chinese as according to the PRO translation guidelines. Structural validity and reliability of the questionnaire were examined by validated factor analysis and Cronbach’s alpha coefficient analysis respectively.ResultsThe results of the validation factor analysis for the Chinese PEEQ parent’s and child’s questionnaires demonstrated that the fit indicators for each dimension met the required criteria. The overall Cronbach’s alpha coefficient of parent’s and child’s questionnaires were 0.840 and 0.854. Both the item-level content validity index (I-CVI) and scale-level content validity index (S-CVI) of each sub-questionnaire were 1.ConclusionThe Chinese version of the PEEQ parent’s questionnaire is suitable as a proxy assessment for patients with PE, but the child’s questionnaire needs further adjustments.

Assessing the Impact of Oral Disorders on the Oral Health-Related Quality of Life of Preschool Children and their Families: A Cross-sectional Study

Introduction: Oral disorders such as Traumatic Dental Injury (TDI) and Early Childhood Caries (ECC) can significantly impact the functional, social, and psychological well-being of growing children and their families. The Early Childhood Oral Health Impact Scale (ECOHIS) serves as a proxy assessment of Oral Health-Related Quality of Life (OHRQoL) in children, developed to evaluate the effects on the quality of life of preschool children. Aim: To assess the impact of oral disorders on the OHRQoL of children aged two to six years and their families. Materials and Methods: In this cross-sectional study, a total of 1000 children aged 2 to 6 years from various preschools in South Bangalore were selected. All children underwent examinations for caries, stains, and fractures. A modified questionnaire survey based on ECOHIS, consisting of 26 questions, was completed by the parents of the children. The answered questionnaire was then evaluated to assess the impact of dental conditions on the quality of life of both children and parents. Kruskal-Wallis Test, Dunn’s post-hoc Test, and Mann-Whitney Test were used to compare the mean scores of different domains of the OHRQoL scale based on ECC and dental trauma, respectively. Results: The severity of ECC demonstrated an adverse effect on the symptom domain (p&lt;0.001), function domain (p=0.002), psychology domain (p=0.03), and the entire score of the Child Impact Section (CIS) (p&lt;0.001). In the Family Impact Section (FIS), the mean scores of the family distress domain and the overall FIS were statistically significant (p&lt;0.001). Dental trauma also showed an adverse effect on the symptoms domain (p&lt;0.001) and the entire scores of the CIS (p=0.001). Additionally, the mean scores of the family distress domain and the overall FIS were statistically significant (p&lt;0.001). Conclusion: The presence of ECC and dental trauma is likely to have a negative impact on the physical, psychological, and emotional well-being of preschool-aged children and their families.

Negative Wealth Shock and Cognitive Decline and Dementia in Middle-Aged and Older US Adults

As a financial hardship, negative wealth shock has been implicated in some adverse health outcomes. However, associations between negative wealth shock and cognitive decline and dementia have not been examined. To investigate whether negative wealth shock was associated with cognitive decline and incident dementia among middle-aged and older US adults. The Health and Retirement Study (HRS) is a prospective cohort study conducted biennially among US adults older than 50 years. Data from the HRS from calendar years 1996 to 2020 were analyzed from July 1 to 31, 2023. The final sample included 8082 participants with complete data of interest. Wealth status was quantified with questionnaires. Negative wealth shock was defined as a loss of 75% or more in total wealth over a 2-year period. Asset poverty was defined as zero or less total net wealth. Cognitive function was assessed with the modified Telephone Interview for Cognitive Status (TICS-m). Dementia status was determined with TICS-m scores and proxy assessment. Among 8082 participants included (mean [SD] age, 63.7 [5.7] years; 4179 women [51.7%] and 3903 men [48.3%]; 1111 Black [13.7%], 6689 White [82.7%], and 282 other [3.5%]), 1441 developed incident dementia over a median follow-up time of 14 (IQR, 7-20) years. Compared with participants who had positive wealth without shock, those with negative wealth shock had accelerated cognitive decline (β coefficient, -0.014 [95% CI, -0.027 to -0.001]; P = .03) and increased risks of dementia (hazard ratio [HR], 1.27 [95% CI, 1.11-1.46]; P < .001). Higher dementia risks were also found in participants with asset poverty at baseline (HR, 1.61 [95% CI, 1.30-2.00]; P < .001). Associations were found in White participants (HR, 1.34 [95% CI, 1.14-1.58]; P < .001) and participants younger than 65 years (HR, 1.38 [95% CI, 1.13-1.68]; P = .001) but not in other races and ethnicities or those 65 years or older. In this cohort study, negative wealth shock was associated with accelerated cognitive decline and elevated risks of dementia among middle-aged and older US adults, with modifications by age and ethnicity. These findings should be confirmed by further prospective and interventional studies.

Wisconsin Longitudinal Study (WLS), the Initial Lifetime’s Impact on Alzheimer’s Disease (WLS‐ILIAD): A Novel Opportunity to Study the Influence of Education on ADRD

AbstractBackgroundThe importance of education in shaping brain health and dementia risk are increasingly supported, although the mechanisms by which these life course factors impact late life cognition remain elusive due to a scarcity of full life‐course longitudinal studies. A new data collection wave of the Wisconsin Longitudinal Study (WLS), the Initial Lifetime’s Impact on Alzheimer’s Disease (WLS‐ILIAD), stands to address this gap. The WLS cohort is a randomly selected community sample that’s been followed since 1957, offering a wealth of prospectively collected lifespan data to pull from. Now that this cohort has reached their 80’s, the ILIAD study aims to detect dementia prevalence in this sample, and when combined with prior data waves, offers an unparalleled opportunity to explore how full life‐course and sociodemographic factors shape the relationship between education and dementia risk and resilience.MethodWLS‐ILIAD employs a multi‐phasic study design. In Phase 1, the modified Telephone Interview for Cognitive Status (TICS‐m) was administered to all eligible participants to screen for dementia risk. Those performing below cutoff (TICS‐m≤28) were selected for Phase 2 to complete more robust cognitive assessment and to obtain comprehensive health history. Cognitive diagnoses were determined by multidisciplinary consensus panel. Proxy assessments were employed for participants who were deceased or unable to complete the assessment.ResultPreliminary results indicate a response rate of ∼78%. Approximately 4,800 participants completed Phase 1, with 1,227 (26%) falling below cutoff for dementia risk (TICS‐m≤28). Of those completing Phase 2, 460 participants were classified as normal cognition, 443 mild cognitive impairment (MCI), and 197 dementia. Another 300 dementia cases were identified via proxy. Participants diagnosed with MCI or dementia tended to be older, ApoeE‐4 allele carriers, and had a lower high school IQ. Of those diagnosed with dementia, 88% reported no prior clinical workup or existing cognitive diagnosis.ConclusionResults of the WLS‐ILIAD study yields detailed cognitive diagnostic classifications for this sample. When combined with prospectively collected life course data, the WLS cohort offers a unique opportunity to explore the impact of education on risk and resilience factors for dementia outcomes, leading to important public policy and public health implications.

Effects of a Virtual Reality Game on Children's Anxiety During Dental Procedures (VR-TOOTH): Protocol for a Pilot Randomized Controlled Trial.

Dental fear and anxiety (DFA) is a condition that affects approximately one-quarter of children and adolescents. It is a significant cause for pediatric patients to avoid dental care later in adulthood. Lack of patient cooperation due to DFA can create an environment of stress, often obligating dentists to end appointments prematurely and consider alternative pharmacological treatment options. Virtual reality (VR) use during dental care, providing an immersive experience through sensory stimuli, is potentially an additional nonpharmacologic tool to better manage DFA in children with special health care needs (SHCN) undergoing dental procedures. This pilot study aims to assess the feasibility and acceptability of VR immersion as a tool to reduce DFA in pediatric special needs patients undergoing dental procedures. The study also aims to gain insight on parent and health care provider perspectives on the use of VR during dental appointments. This pilot randomized controlled trial study will follow a parallel design including 2 groups: a control group (clinic's standard care using a wall TV) and an experimental group (using a VR game). We will randomize 20 participants to either group. Recruitment will be carried out at the dental clinic of the Centre Hospitalier Universitaire Sainte-Justine, a tertiary-quaternary care center that mostly serves pediatric patients with SHCN. The primary outcome will be patient recruitment rates and completion rates of planned procedures. DFA in children will be assessed using both an observation-based proxy assessment with the Venham Anxiety and Behavior Rating Scale and physiological assessments using parameters such as change in heart rate and levels of salivary alpha-amylase as a stress biomarker before and 10 minutes after the procedure. Sociodemographic characteristics, measures of the levels of parent and health care professional satisfaction, occurrence of side effects, and any deviation from normal procedure length will also be collected. Descriptive statistics, nonparametric tests, and effect sizes will be used for demographic and clinical variables and to present parent and health care professional satisfaction levels as well as procedural time. This study will be conducted from May 2023 to May 2024, with results expected to be available in December 2024. The pilot study will provide insight on the feasibility and acceptability of VR use in clinical dentistry to reduce DFA for pediatric patients with SHCN. This study will guide future research on VR use in pediatric dentistry and can serve as a framework for a larger randomized clinical trial. ClinicalTrials.gov NCT05898100; https://classic.clinicaltrials.gov/ct2/show/NCT05898100. DERR1-10.2196/49956.

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team

BackgroundSpecialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers.MethodsUsing the Palliative Care Outcome Scale (POS; Score 0–40), proxy assessments of SPC outcomes in the patient’s last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved ‘particularly well’ or ‘inadequately’ (last 7 days), which were content analyzed and quantified.ResultsProxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were ‘not wasted time’ (team 99%/family caregivers 87%), ‘information’ (84%/47%) and ‘support’ (53%/31%). Items rated as most affected (= 4) were ‘patient anxiety’ (31%/51%), ‘life not worthwhile’ (26%/35%) and ‘no self-worth’ (19%/30%). Both groups indicated more problems solved ‘particularly well’ than ‘inadequately’; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care.ConclusionsThis study shows the range and type of symptoms and other concerns reported in the patient’s last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.

Health-Related Predictive Factors of Brazilian Children With Early Onset Scoliosis Using the EOSQ-24 and CHQ-PF50 Questionnaires.

Assessing the quality of life (QOL) of children with early onset scoliosis (EOS) has been discussed recently. Therefore, the study aimed to apply and correlate the 24-item Early Onset Scoliosis Questionnaire (EOSQ-24) with the 50-item Childhood Health Questionnaire (CHQ-PF50) to find predictive factors impacting QOL. Cross-sectional study involving a population of caregivers of patients with EOS. The sample consisted of 72 patients. Two research assistants applied the Portuguese version of the EOSQ-24 and CHQ-PF50 in 3 treatment centers. The EOSQ-24 assesses the subjective response of children with EOS from the parent's point of view. The CHQ is a self-administered questionnaire or parental proxy assessment of the psychological and social status of children aged 5 to 18 years. Of 72 patients, 41 (56.9%) were females, mean age of 11.9 ± 4.2 years. The most common scoliosis was of neuromuscular origin (32%). The CHQ-PF50 showed that family-related items had significant scores. The most affected subcategory was physical function (45.5), and the least affected was mental health (90.8). Thus, the CHQ-PF50 PhS summary index was 27, and the CHQ-PF50 PsS was 71.7. Moreover, the critical categories for the EOSQ-24 questionnaire were daily life and physical function (45.1 and 47.8, respectively), and the least affected categories were transfer and pulmonary function (70.8 and 68.9, respectively). Four subcategories showed a strong correlation between both questionnaires: general health (r = 0.749, P < 0.001), physical function (r = 0.645, P < 0.001), bodily pain (r = 0.714, P < 0.001), and mental health (r = 0.424, P < 0.001). Using CHQ-PF50 as a dependent variable in multiple regression analysis (P = 0.028), the only variable affecting the scores was syndromic scoliosis (P = 0.019; 95% CI -27.4 to -2.5). A strong correlation between both questionnaires was seen for general health, physical function, bodily pain, and mental health. Syndromic scoliosis was a predictor of worse QOL according to the CHQ-PF50.

Subtle alterations of vestibulomotor functioning in conductive hearing loss.

Conductive hearing loss (CHL) attenuates the ability to transmit air conducted sounds to the ear. In humans, severe hearing loss is often accompanied by alterations to other neural systems, such as the vestibular system; however, the inter-relations are not well understood. The overall goal of this study was to assess vestibular-related functioning proxies in a rat CHL model. Male Sprague-Dawley rats (N=134, 250g, 2months old) were used in a CHL model which produced a >20dB threshold shift induced by tympanic membrane puncture. Auditory brainstem response (ABRs) recordings were used to determine threshold depth at different times before and after CHL. ABR threshold depths were assessed both manually and by an automated ABR machine learning algorithm. Vestibular-related functioning proxy assessment was performed using the rotarod, balance beam, elevator vertical motion (EVM) and Ferris-wheel rotation (FWR) assays. The Pre-CHL (control) threshold depth was 27.92dB±11.58dB compared to the Post-CHL threshold depth of 50.69dB±13.98dB (mean±SD) across the frequencies tested. The automated ABR machine learning algorithm determined the following threshold depths: Pre-CHL=24.3dB, Post-CHL same day=56dB, Post-CHL 7 days=41.16dB, and Post-CHL 1 month=32.5dB across the frequencies assessed (1, 2, 4, 8, 16, and 32kHz). Rotarod assessment of motor function was not significantly different between pre and post-CHL (~1week) rats for time duration (sec) or speed (RPM), albeit the former had a small effect size difference. Balance beam time to transverse was significantly longer for post-CHL rats, likely indicating a change in motor coordination. Further, failure to cross was only noted for CHL rats. The defection count was significantly reduced for CHL rats compared to control rats following FWR, but not EVM. The total distance traveled during open-field examination after EVM was significantly different between control and CHL rats, but not for FWR. The EVM is associated with linear acceleration (acting in the vertical plane: up-down) stimulating the saccule, while the FWR is associated with angular acceleration (centrifugal rotation about a circular axis) stimulating both otolith organs and semicircular canals; therefore, the difference in results could reflect the specific vestibular-organ functional role. Less movement (EVM) and increase time to transverse (balance beam) may be associated with anxiety and alterations to defecation patterns (FWR) may result from autonomic disturbances due to the impact of hearing loss. In this regard, vestibulomotor deficits resulting in changes in balance and motion could be attributed to comodulation of auditory and vestibular functioning. Future studies should manipulate vestibular functioning directly in rats with CHL.

How valid are proxy assessment of mental health and sleep comorbidities of patients with epilepsy using standardized questionnaires?

BackgroundThe study aimed to determine the level of agreement between patients with epilepsy and their proxies when assessing psychiatric comorbidities, sleep disorders, and medication adherence using standardized questionnaires. MethodsThis agreement study is an ancillary analysis of the PRERIES study, a matched case-control study exploring SUDEP risk factors. Controls aged 15 years and older, with active epilepsy or in remission for less than 5 years were recruited between 01/01/2011 and 03/31/2019. An interview was carried out by a trained psychologist on both the patient and a proxy-respondent. During these independent interviews, the following comorbidities were explored: psychiatric comorbidities using the MINI, the STAI- Y2 and NDDI-E scales, sleep disorders with the SDQ-SA and Epworth scales and medication adherence. Level of agreement between patient and their proxy was estimated using Gwet's AC1&2. ResultsAmong the 107 patient–proxy dyads recruited, proxy respondents were mainly family members (65.4%) or spouses (30.8%). Exploration of present major depression showed excellent agreement at 0.81 [0.65;0.97], as well as exploration of dysthymia at 0.96 [0.61;1]. Suicidal risk evaluation had a lesser agreement at 0.77 [0.60;0.94]. Agreement on anxiety was moderate 0.5 [0.38;0.62]. For sleep disorder, SDQ-SA presented a better agreement than the Epworth questionnaire with respectively 0.73 [0.51;0.95] and 0.45 [0.26;0.63]. For medication adherence, the overall agreement rate was excellent (0.90 [0.78;1]). ConclusionExploration of potential risk factors through families can give valuable and relatively robust information, especially if the respondent lives with the patient, and should be retrieved, when possible, in usual clinical setting.

Faktor-Faktor Yang Mempengaruhi Kinerja Keuangan Dengan Environmental Performnace Sebagai Variabel Intervening

This study uses a proxy assessment of environmental performance by PROPER-participating firms. The research focuses on an Indonesia Stock Exchange-traded company that will be evaluated as part of the PROPER program between 2019 and 2022. The study found that environmental performance was positively related to return on asset (ROA) and that it was not able to mediate the relationship between the board of commissioners and financial performance. Institutional ownership factors had no effect on environmental performance.

Societal Utilities for Cognitive Impairment in Schizophrenia: Developing a Preference-Based Scoring Algorithm Based on the Schizophrenia Cognition Rating Scale.

Loss of cognitive function is a common feature in schizophrenia. However, generic measures of health-related quality of life favored by decision-makers, such as the EQ-5D, are not designed to detect changes in cognitive function. We report the valuation of the Schizophrenia Cognition Rating Scale (SCoRS), a schizophrenia-specific measure of cognitive impairment. Expert opinion and psychometric analysis of the SCoRS from clinical trial data was undertaken to select 5 key items from the measure. These items were combined orthogonally to develop health-state vignettes. Vignettes were valued using composite time trade-off (cTTO) in one-on-one video calls. Several econometric models were fitted to the data to estimate disutilities. Performance of EQ-5D- and SCoRS-based utilities were compared in the trial data. The SCoRS items selected for the valuation study represented attention, learning, processing speed, social cognition and memory. Four hundred respondents participated in the valuation study. The best observed health state was valued at 0.855 [standard deviation (SD)=0.179] and the worst at 0.152 (SD=0.575). At the most severe levels, 'social cognition' received the largest disutility followed by 'learning' and 'memory'. The final model to estimate utilities had 15 parameters. SCoRS-based utilities were sensitive to change in cognition, but the EQ-5D was not. It is feasible to value different dimensions of cognition separately using a validated instrument for proxy assessment. The resulting utilities indicate loss of quality of life due to reduced cognitive functioning.

Factors Associated With Agreement Between Parent and Childhood Cancer Survivor Reports on Child's Health Related Quality of Life.

Pediatric Health Related Quality of Life (HRQoL) among childhood cancer survivors (CCS) measures the impact of illness and treatment from the patient's perspective. However, parents often serve as proxies when the child cannot provide information directly. Studies of agreement between parents' proxy assessment and child's self-report have shown discrepancies. Understanding the reasons for discrepancies is under studied. Thus, this study examined the agreement of 160 parent-CCS dyads on the child's domains of HRQoL by mean difference, intra-class correlation coefficients, and Bland-Altman plots. Differences in agreement were assessed by patients' age, ethnicity, and whether or not they lived with their parents. Overall, the Physical Function Score showed good agreement between parents and CCS (ICC = 0.62), while the Social Function Score had fair agreement (ICC = 0.39). CCS were more likely to rate their Social Function Score higher than their parent. The lowest agreement for the Social Function Score was found for 18-20years old's (ICC = .254) versus younger or older CCS, and among non-Hispanic whites (ICC = 0.301) versus Hispanics. Differences in agreement varied by patient age and ethnicity, suggesting that other factors, including emotional, familial, and cultural factors, may influence parental awareness of CCS HRQoL.

Education, incident cancer, and rate of memory decline in a national sample of US adults in mid-to-later-life

IntroductionMiddle-aged and older adults who develop cancer experience memory loss following diagnosis, but memory decline in the years before and after cancer diagnosis is slower compared to their cancer-free counterparts. Educational attainment strongly predicts memory function during aging, but it is unclear whether education protects against memory loss related to cancer incidence or modifies long-term memory trajectories in middle-aged and older cancer survivors. Materials and MethodsData were from 14,449 adults (3,248 with incident cancer, excluding non-melanoma skin cancer) aged 50+ in the population-based US Health and Retirement Study from 1998 to 2016. Memory was assessed every two years as a composite of immediate and delayed word recall tests and proxy assessments for impaired individuals. Memory scores all time points were standardized at to the baseline distribution. Using multivariate-adjusted linear mixed-effects models, we estimated rates of memory decline in the years before cancer diagnosis, shortly after diagnosis, and in the years after diagnosis. We compared rates of memory decline between incident cancer cases and age-matched cancer-free adults, overall and according to level of education (<12 years, “low”; 12 to <16 years, “intermediate”; ≥16 years, “high”). ResultsIncident cancer diagnoses were followed by short-term declines in memory averaging 0.06 standard deviation (SD) units (95% confidence interval [CI]: −0.084, −0.036). Those with low education experienced the strongest magnitude of short-term decline in memory after diagnosis (−0.10 SD units, 95% CI: −0.15, −0.05), but this estimate was not statistically significantly different from the short-term decline in memory experienced by those with high education (−0.04 SD units, 95% CI: −0.08, 0.01; p-value for education as an effect modifier = 0.15). In the years prior to and following an incident cancer diagnosis, higher educational attainment was associated with better memory, but it did not modify the difference in rate of long-term memory decline between cancer survivors and those who remained cancer-free. DiscussionEducation was associated with better memory function over time among both cancer survivors and cancer-free adults aged 50 and over. Low education may be associated with a stronger short-term decline in memory after a cancer diagnosis.

Differences in Self and Proxy Assessments of Self-Determination in Young People with Intellectual Disability: The Role of Personal and Contextual Variables.

Assessing self-determination in students with intellectual disabilities (IDs) is a primary step in facilitating progress monitoring. Researchers have developed both self and proxy assessments to favor a more in-depth evaluation of self-determination expression. However, to date, limited research has explored the congruence between both assessments. To address this need, the present study analyzes the differences between 219 adolescents with ID; 63% being males with an age range from 13 to 21 years (M = 16.8; SD = 1.72); and their teachers in their assessment of self-determination and explores which factors (students' age, sex, level of ID and opportunities at school) might explain those differences. The participants were recruited intentionally. Students with IDs completed two questionnaires: the AIR Self-Determination Scale and the Spanish version of the Self-Determination Inventory, which was also completed by their teachers. Significant differences were found in the self-determination assessment, with teachers rating it lower. Further, students' sex and the opportunities they were provided at school to engage in self-determined actions were found to explain the differences in self-determination assessment. Research and practice initiatives to assess self-determination in young people with IDs must consider that informants' points of view might be influenced by students' sex and by contextual opportunities to engage in self-determined actions. Implications for further research and practice are discussed.

A pilot intervention of using a mobile health app (ONC Roadmap) to enhance health-related quality of life in family caregivers of pediatric patients with cancer.

The Roadmap mobile health (mHealth) app was developed to provide health-related quality of life (HRQOL) support for family caregivers of patients with cancer. Eligibility included: family caregivers (age ≥18 years) who self-reported as the primary caregiver of their pediatric patient with cancer; patients (age ≥5 years) who were receiving cancer care at the University of Michigan. Feasibility was calculated as the percentage of caregivers who logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the 120-day study duration. Feasibility and acceptability was also assessed through a Feasibility and Acceptability questionnaire and the Mobile App Rating Scale to specifically assess app-quality. Exploratory analyses were also conducted to assess HRQOL self- or parent proxy assessments and physiological data capture. Between September 2020-September 2021, 100 participants (or 50 caregiver-patient dyads) consented and enrolled in the ONC Roadmap study for 120-days. Feasibility of the study was met, wherein the majority of caregivers (N=32; 65%) logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the study duration (defined a priori in the Protocol). The Feasibility and Acceptability questionnaire responses indicated that the study was feasible and acceptable with the majority (>50%) reporting Agree or Strongly Agree with positive Net Favorability [(Agree + Strongly Agree) - (Disagree + Totally Disagree)] in each of the domains (e.g., Fitbit use, ONC Roadmap use, completing longitudinal assessments, engaging in similar future study, study expectations). Improvements were seen across the majority of the mental HRQOL domains across all groups; even though underpowered, there were significant improvements in caregiver-specific aspects of HRQOL and anxiety and in depression and fatigue for children (ages 8-17 years), and a trend toward improvement in depression for children ages 8-17 years and in fatigue for adult patients. This study supports that mHealth technology may be a promising platform to provide HRQOL support for caregivers of pediatric patients with cancer. Importantly, the findings suggest that the study protocol was feasible, and participants were favorable to participate in future studies of this intervention alongside routine cancer care delivery.