Proxy Ratings Research Articles

Are you asleep? Comparing sleep metrics in pediatric cardiac patients with objective and subjective indicators

BackgroundExamination of sleep in pediatric cardiology patients has typically relied on self-reports with unknown reliability to objective assessments. Wearable technologies provide an objective data source to evaluate sleep. Improved understanding and treatment of sleep in pediatric heart patients may be an untapped aspect that could improve health-related quality of life. ObjectivesThe purpose of this study was to identify patterns of duration and quality of sleep in pediatric cardiology patients using both subjective and objective assessment. MethodsPatients were recruited in a pediatric cardiology clinic and completed a set of sleep and quality of life questionnaires including the Pittsburg Sleep Quality Index (PSQI), the Pediatric Cardiac Quality of Life Inventory (PCQLI), and the Cardiac Anxiety Questionnaire (CAQ). Patients also agreed to wear an actigraphy watch for 7 days, and caregivers were also recruited as proxy raters. ResultsThe sample included 31 patients with a mean age of 15.58 (SD = 1.89). Patients self-reported an average sleep duration of 7.61 h (SD = 1.67, range = 3–11). In contrast, objective sleep data indicated that patients obtained an average of 5.98 h of sleep nightly (SD = 1.01, range = 3.23–7.46) with a sleep efficiency score of 73.2 (SD = 6.23) and a sleep latency period of 21.04 min (SD = 19.16, range = 1–63). Parent-reported sleep duration on the PSQI had a mean of 8.10 h (SD = 1.34, range = 6–11). Thirty four percent of patients met PSQI cut off score for poor sleep based on self-report and 30 % based on parental-report. ConclusionsPediatric cardiac patients report better sleep duration than objective assessments. These data suggest that sleep complaints from pediatric cardiac patients may benefit from objective assessment and may need enhanced clinical attention since complaints may over-estimate the duration of sleep.

Psychometric evaluation of the Clinical Interview for Externalizing Disorders (ILF-EXTERNAL) in an online setting - Results from the consortium project INTEGRATE-ADHD.

The study examines the psychometric properties of the ADHD section of the semi-structured diagnostic interview ILF-EXTERNAL, which was conducted online via video chat. As part of the INTEGRATE-ADHD research project, 202 children and adolescents (age M = 12.87 years, SD = 3.04, 28.2 % female) with an administrative diagnosis of ADHD registered with their health insurance company were clinically assessed for the presence of ADHD according to the German ADHD S3 guideline. Using the ILF-EXTERNAL, one parent and, from the age of eight, also the children themselves were interviewed. A proxy rating by a parent was made using the German FBB-ADHS rating scale. In a subsample (n = 65), an independent blind interviewer rated the videorecordings of the ILF-EXTERNAL parent interview to determine the interrater reliability of the ILF-EXTERNAL. All ADHD symptom scales of the ILF-EXTERNAL showed good to excellent internal consistency (α = 0.89 to 0.93). Interrater reliability was high for both categorical and dimensional analyses (κ = 0.78 and κ = 0.81; ICC(1,1) = 0.97 and 0.98). High correlations of the ILF-EXTERNAL parent interview with the FBB-ADHS (r = 0.79 to r = 0.85) and with the ILF-EXTERNAL child interview (r = 0.60 to r = 0.71) demonstrated convergent validity. Sound psychometric properties of the ILF-EXTERNAL were also confirmed for its use in an online setting. High interrater reliabilities demonstrate the quality of the ADHD diagnostics carried out in the consortium project INTEGRATE-ADHD.

Preparing Children for Invasive MedicalCancer Treatment with "My Logbook": Preliminary Results of a Pilot Study.

Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).

Factor structure of FUNDES-Child-SE measuring the participation and independence of children with disabilities.

FUNDES-Child-SE is a proxy rating questionnaire for measuring participation and independence in children with disabilities in a Swedish context. It includes the components of frequency of attendance, engagement and independence. The original, Taiwanese FUNDES-Child 7.0, has previously been found to have a four-factor structure for frequency of participation and a two-factor structure for independence. The aim of this study was to test the factor structure in FUNDES-Child-SE. The factor structure is an important part of construct validity. Caregivers of 163 children with disabilities aged 6-18 years participated in this cross-sectional study. Exploratory factor analysis was used to find the factor structure for Engagement. Confirmatory factor analysis was used to test the factor structure for all three components. The proposed factor structure for frequency of participation (daily living participation frequency, mobility participation frequency, learning participation frequency and community participation frequency) and independence (daily living independence and social participation independence) fit with data from FUNDES-Child-SE after excluding three to five items and adding two to five covariances of residuals. In the engagement component, two factors, named engagement in informal activities and engagement in formal activities, were found. After excluding one item and adding 10 covariances of residuals, the factor structure had an acceptable fit to data. Differences in components' factor structure indicate that attendance and engagement are separate aspects of participation. Before using numeric scores from FUNDES-Child-SE in clinical settings, responsiveness and interpretability should be evaluated.

Applicability and clinical utility of the German rivermead post-concussion symptoms questionnaire in proxies of children after traumatic brain injury: an instrument validation study.

The German Rivermead Post-Concussion Symptoms Questionnaire (RPQ) can be used to assess post-concussion symptoms (PCS) after traumatic brain injury (TBI) in adults, adolescents, and children. In this study, we examined the psychometric properties of the German RPQ proxy version (N = 146) for children (8-12 years) after TBI at the item, total and scale score level. Construct validity was analyzed using rank correlations with the proxy-assessed Post-Concussion Symptoms Inventory (PCSI-P), the Patient Health Questionnaire 9 (PHQ-9), and the Generalized Anxiety Disorder Scale 7 (GAD-7). Furthermore, sensitivity testing was performed concerning subjects' sociodemographic and injury-related characteristics. Differential item functioning (DIF) was analyzed to assess the comparability of RPQ proxy ratings for children with those for adolescents. Good internal consistency was demonstrated regarding Cronbach's α (0.81-0.90) and McDonald's ω (0.84-0.92). The factorial validity of a three-factor model was superior to the original one-factor model. Proxy ratings of the RPQ total and scale scores were strongly correlated with the PCSI-P (ϱ = 0.50-0.69), as well as moderately to strongly correlated with the PHQ-9 (ϱ = 0.49-0.65) and the GAD-7 (ϱ = 0.44-0.64). The DIF analysis revealed no relevant differences between the child and adolescent proxy versions. The German RPQ proxy is a psychometrically reliable and valid instrument for assessing PCS in children after TBI. Therefore, RPQ self- and proxy-ratings can be used to assess PCS in childhood as well as along the lifespan of an individual after TBI.

Patient- and proxy-reported quality of life in advanced dementia with Lewy bodies.

Little is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly in advanced stages. Dyads of individuals with moderate-advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of patient/caregiver experiences. The Quality of Life in Alzheimer's Disease (QoL-AD) was completed by the person with DLB and the caregiver (proxy) in 61 dyads; 85 dyads had only a proxy-completed QoL-AD. Patient- and proxy-reported scores were moderately correlated (r=0.57, P<0.0001). Worse patient-reported QoL correlated with daytime sleepiness, autonomic symptom burden, and behavioral symptoms. Proxy ratings correlated with dementia severity, daytime sleepiness, behavioral symptoms, dependence in activities of daily living, and caregiver experience measures. Patient- and proxy-reported quality of life (QoL) should be assessed separately in advanced DLB. Some symptoms associated with QoL have available therapeutic options. Research is needed regarding strategies to optimally improve QoL in DLB. Patient and proxy quality of life (QoL) ratings had moderate correlation in advanced dementia with Lewy bodies. Daytime sleepiness affected patient- and proxy-reported QoL. Behavioral symptoms affected patient- and proxy-reported QoL. Autonomic symptom burden affected patient-reported QoL. Dementia severity, dependence, and caregiver experiences affected proxy ratings.

Assessment of impaired self-awareness after moderate-to-severe traumatic brain injury: a comparison of assessment tools.

To compare different assessment methods of impaired self-awareness (ISA). We included 37 patients with moderate-to-severe traumatic brain injury (TBI) at a subacute/chronic stage, and 33 healthy controls. ISA was assessed with three methods: discrepancy scores (comparison between patient and proxy ratings) on three scales (Patient Competency Rating Scale (PCRS), Awareness Questionnaire (AQ) and Dysexecutive Questionnaire (DEX)); clinician rating with the Self-Awareness of Deficits Interview (SADI); and the difference between prediction or estimation of performance and actual performance on two cognitive tasks. Clinician-patient discrepancy scores appeared more sensitive than relative-patient discrepancy. The AQ was the most sensitive. The discrepancy scores were strongly correlated one with each other. Correlations with the SADI were weaker. Patients did not overestimate their performance on cognitive tasks, and the prediction did not significantly correlate with other measures of ISA. Results support the multidimensional nature of ISA: discrepancy scores assess meta-cognitive knowledge (understanding that a function/skill is affected), while the SADI takes into account anticipatory awareness (ability to set realistic goals) and estimation of performance assesses anticipatory and situational awareness. Assessment of these different domains may provide a comprehensive overview of an individual's self-awareness.

Neurocognitive and psychosocial outcomes in survivors of childhood leukemia with Down syndrome.

The primary aim of this study was to assess the feasibility of a developmentally tailored neurocognitive assessment in survivors of childhood acute leukemia with Down syndrome (DS-leukemia). A secondary aim was to compare outcomes in the DS-leukemia group to a historical comparison group of individuals with DS and no history of childhood cancer. Survivors of DS-leukemia (n = 43; 56% male, mean [SD] age at diagnosis = 4.3 [4.5] years; age at evaluation = 15 [7.9] years) completed a neurocognitive assessment battery that included direct measures of attention, executive function, and processing speed, and proxy ratings of attention problems and executive dysfunction. Direct assessment outcomes were compared to a historical comparison cohort of individuals with DS and no history of childhood cancer (DS-control; n = 117; 56% male, mean [SD] age at evaluation = 12.7 [3.4] years). Rates of valid task completion ranged from 54% to 95%, suggesting feasibility for most direct assessment measures. Compared to the DS-control group, the DS-leukemia group had significantly lower completion rates on measures of executive function (p = 0.008) and processing speed (p = 0.018) compared to the DS-control group. There were no other significant group differences in completion rates. Compared to the DS-control group, the DS-leukemia group had significantly more accurate performance on two measures of executive function (p = 0.032; p = 0.005). Compared to the DS-control group, the DS-leukemia group had significantly more problems with executive function as identified on proxy ratings (6.5% vs. 32.6%, p = <0.001). Children with Down syndrome (DS) are at increased risk for developing acute leukemia compared to the general population but are systematically excluded from neurocognitive outcome studies among leukemia survivors. This study demonstrated the feasibility of evaluating neurocognitive late effects in leukemia survivors with DS using novel measures appropriate for populations with intellectual developmental disorder.

TRAJECTORIES OF FORMAL SOCIAL PARTICIPATION, GENDER, AND END-OF-LIFE CARE QUALITY AMONG OLDER AMERICANS

Abstract Limited research has examined the association between formal social participation trajectories and end-of-life care quality. The end of life could be characterized by experiences of heightened feelings of physical and psychological distress, breathlessness, constant hospitalization, and intrusive interventions. Formal social participation may improve the end-of-life care of older adults because they serve as sources of useful information, receipt of emotional support, and improve self-efficacy. This research examines the associations between formal social participation trajectories and proxy ratings of overall end-of-life care quality, and the moderating role of gender. Growth-based trajectory models were used to identify distinct developmental trajectories of formal social participation among older adults in the United States. Findings revealed four social participation trajectory classes among older adults towards the end of life, all with a general tendency to decline across time. Multinomial logistic regression analyses showed that although older adults with higher levels of formal social participation have more positive overall end-of-life care ratings, there are gender differences in these care ratings. Women are less likely than men to chart, by proxy report, positive care ratings at the end of life even though they have higher levels of formal social participation, and these gender differences in end-of-life care rating are explained more by healthcare factors than formal social participation trajectories. These results suggest that both formal social participation and positive interactions with health care at the end of life are more beneficial for older men than women.

The assessment of Mild Behavioral Impairment (MBI): Some methodological issues

Objective:The assessment of MBI involves two important issues: 1) to know the underlying structure of the Mild Behavioral Impairment Checklist (MBI-C) a questionnaire designed to evaluates Neuropsychiatric Symptoms (NPS) in pre-dementia states; and 2) to consider self and proxy (i.e., study partner) symptom ratings that may not capture comparable samples. Our objective is to give some answer to these questions: first, to analyze the underlying structure of the MBI-C at baseline and follow-up using Multidimensional Scaling (MDS) and two, to determine how self and proxy ratings and the choice of rating type impact in the results of the MBI-C.Methods:To analyze MBI-C structure, 200 Subjective Cognitive Decline and Mild Cognitive Impairment patients from the CompAS longitudinal study completed baseline and follow-up assessments. Two-step bidimensional weighted dichotomous MDS were performed. All items were included in the first step. Items closely associated with each dimension (1 SD above or below the mean) were selected in a second step to obtain the final models solution.We will also present a review of the literature on the importance of self and proxy MBI-C ratings. We will also present new empirical evidence based on data from over 10,000 cognitively normal.Results:Results from baseline and follow-up showed two dimensions: Dimension I (right-left) differentiate high and low emotional activation and Dimension II (top-down) high and low behavioral activation. The combination of both generates 4 quadrants: resistance, restlessness, flattening and desolation. The final models were built considering the most relevant items, with little differences between baseline and follow-up. The good fit of the models, type of two-dimensional solution and group weights were similar in baseline and follow-up.Regarding our second objective, the results suggest that self and proxy ratings may not capture comparable samples and that the choice of rating type can indeed impact the conclusions drawn from analysis.Conclusions:The 4 quadrants identified could be the most useful NPS to determine risk factors for predementia patients. Also, the findings suggest that the way of applying the MBI-C has relevant implications.

Attitude to the disease and quality of life in elderly patients with mild vascular dementia after the novel coronavirus infection

In order to study the types of attitude towards the disease and quality of life (QoL) in elderly patients with mild vascular dementia (MVD) living in the conditions of the psychoneurological institution Social Service House “Severnoye Izmailovo” in Moscow, there were 2 study groups: the patients with the clinical debut of the novel coronavirus infection (NCVI) of 6 months +/– 1 month with the recovery outcome (n=65; 33 men, 32 women) and those who did not have COVID-19 (hospital control group; n=67; 34 men, 33 women). The mean age of the studied patients was 73.05±3.48 years. The age and sex composition of the two groups was homogeneous (p&gt;0.05). Emotional disorders were investigated using the Cornell Scale for Depression in Dementia (CSDD); cognitive disorders – by means of the Montreal Cognitive Assessment (MoCA); QoL – by the Quality of Life in Alzheimer's Disease scale (QoL-AD): QoL self-assessment (QoL-AD-SR (self-rating)) and proxy QoL rating (QoL-AD-PR (proxy rating)); the type of attitude towards the disease – by the TATD scale (Wasserman L.I. et al., 2005). It was found that COVID-19 aggravates cognitive deficits in patients with MVD (according to MoCA 20.80±0.59 /21.40±0.78 points; p&lt;0.05) in the absence of depression (according to CSDD 1.52±0.50 / 1.52±0.84 points in the group of the patients after NCVI / hospital control group, respectively; p&gt;0.05). In the patients after COVID-19, a correlation was found between the proxy QoL rating and the severity of cognitive dysfunction according to the MoCA (R= – 0.28), while in the hospital control group – between the proxy QoL rating and the severity of depressive manifestations (R= – 0.33). The first group of the patients was characterized by a mixed type of attitude to the disease and intrapsychic maladaptation (the neurasthenic type ranked first at 16.03±8.29 / 9.34±5.03 points), while the second group had a diffuse type of attitude to the disease and interpsychic maladaptation (the sensitive type ranked first at 10.31±5.71 / 14.90±7.62 points by the TATD scale among the elderly patients with MVD who have / have not undergone NCVI; p&lt;0.05). The revealed patterns can contribute to the optimization of personalized models of medical and psychological rehabilitation of elderly patients with MVD living in closed-type care facilities.

The Cognitive Awareness Scale for Basic and Instrumental activities of daily living to measure self-awareness after acquired brain injury: Preliminary evidence of its validity

Objective: There is a crucial need for reliable tools to measure impaired self-awareness (ISA) in patients with acquired brain injury (ABI) across cognitive-functional domains. The aim of this study was to assess the psychometric properties of the Cog-Awareness ADL Scale, which is a novel self-proxy discrepancy method for measuring ISA in both basic and instrumental activities of daily living. Methods: This multicenter study included 54 patients (no-low ISA n = 33; severe ISA, n = 21) from four outpatient rehabilitation units in Málaga-Granada, Spain, and 51 healthy controls. The participants and proxy raters completed the Cog-Awareness ADL Scale and the Patient Competency Rating Scale (PCRS). Agreement between both scales was assessed using Spearman’s correlations and the Bland-Altman plot. Group comparisons were made on measures of SA, cognitive abilities and demographic variables. Sensitivity and specificity were analysed by ROC curve analysis. Results: Convergent validity was supported by strong correlations with the PCRS and its subscales (rho’s ranging from 0.51 to 0.80, p < 0.01 for all). The Bland-Altman plot confirmed measurement agreement (only 3.70% of the scores were outside the 95% limits). External validity was demonstrated by effectively discriminating between healthy controls and ABI patients with no-low and severe ISA on each discrepancy index while controlling for cognitive/demographic variables. The Cog-Awareness ADL Scale showed optimal diagnostic accuracy (AUC = 0.95, sensitivity = 0.90, specificity = 0.90). Conclusions: The Cog-Awareness ADL Scale proved to be a feasible, valid, and clinical tool to assess ISA across different cognitive-functional domains, in Spanish ABI-patients.

Self and proxy symptom reporting in patient-caregiver dyads coping with a primary brain tumor: The role of psychosocial function in rating agreement.

223 Background: Patients with glioma experience high levels of symptom burden with often sudden performance declines. As such, family caregivers tend to report on the patient’s symptoms; yet previous research examining the validity of proxy symptom reporting points to inconsistent findings. While prior studies focused on identifying patient clinical variables that may be related to agreement, caregiver characteristics may also be important for accurately perceiving patient symptoms. We examined the associations between symptom agreement and patient and caregiver perceived illness communication, depressive symptoms, and QOL. Methods: As part of a behavioral intervention trial, baseline assessments were collected prior to randomization in 67 dyads. We report on patient symptom burden (MDASI-BT) and patient and caregiver depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Paired t-tests, difference scores and inter-correlations coefficients (ICCs) were used to test for agreement, accuracy and congruence in proxy symptom scores, respectively. Bivariate correlations were calculated to examine the association between psychosocial function variables and symptom agreement. Dyadic level associations between symptom agreement and QOL were examined using multi-level modeling. Results: Thirty-nine percent of patients (63% male; 93% non-Hispanic White; mean age=47 years; 84% Grade III-IV) and 49% of caregivers (79% female; 90% non-Hispanic White; mean age=51 years) endorsed clinical levels of depression. Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for GI symptoms and general symptoms. 22% of caregivers overestimated and 13% underestimated overall symptom severity and 32% overestimated and 21% underestimated symptom interference. ICCs of patient and caregiver proxy ratings were significant (except cognitive and GI subscales) ranging from small to moderate coefficients (.09 - .50). Patient illness communication was associated with agreement in overall symptom severity (r=-.27, p=.03) and affective symptom subscale (r=-.34, p&lt;.01). Caregiver illness communication (r=-.33, p&lt;.01) and depressive symptoms (r=.46, p&lt;.0001) were associated with symptom interference agreement. Caregiver overestimation of patient symptom severity was significantly associated with poor caregiver physical QOL, while underestimation was significantly associated with poor patient physical and mental QOL and poor caregiver mental QOL. Conclusions: The psychosocial context of the family plays an important role in the accuracy of proxy symptom reporting. Moreover, inaccurately understanding patients' experience is related to poor QOL for both patients and caregivers, which points to important targets for symptom management interventions that involve family caregivers.

Communicative participation outcomes in individuals with Parkinson's disease receiving standard care speech-language therapy services in community settings.

The Communicative Participation Item Bank (CPIB) is a patient-reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day-to-day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community-based, standard care, speech-language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient-defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy-rated scores, and comparison to other common PROMs. Forty-six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre-treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10-item short form (VHI-10), PROMIS Global Health-Related Quality of Life, Levels of Speech Usage, self-rated speech severity, and Patient Health Questionnaire-9 (PHQ-9). Participants also engaged in qualitative interviews. Forty-four family members completed proxy CPIB ratings. There were no significant differences between treatment and observation groups on the CPIB pre-treatment, but there were significant differences post-treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient-proxy pairs. Associations between CPIB and VHI-10, health-related quality of life, self-reported speech severity, and depression ranged from weak to moderate. The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. What is already known on this subject The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)-reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community-based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10-item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work? The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD.

Association Between Self- and Proxy-Reported Depression and Quality of Life in Mild-Moderate Alzheimer's Disease

Prior studies have reported an association between depression and quality of life (QOL) in Alzheimer's disease (AD), but the effect of self- versus proxy rating of mood and QOL has not been described. In this secondary analysis of data from a cohort study, the authors used a linear mixed-effects model to determine if the association between depression and QOL is affected by whether both measures are assessed by the same member of the patient-caregiver dyad. Participants and caregiver informants were recruited from 10 California Alzheimer Disease Centers. A total of 137 participants with mild-to-moderate Alzheimer's disease and their caregivers. Self- and proxy-rated scores on both the Geriatric Depression Scale (GDS) and the Quality of Life in Alzheimer's Disease scale (QoL-AD). Multivariable linear mixed-effects models were used to estimate the association between depression and QOL. Results of the multivariable linear mixed-effects models showed a significant association between self-rated QoL-AD and self-rated (B=-0.49, p <0.0001) but not proxy-rated GDS (B=-0.07, p=0.19) after adjusting for confounders. Likewise, there was a significant association between proxy-rated QoL-AD and proxy-rated GDS (B=-0.48, p <0.0001) but not self-rated GDS (B=0.05, p=0.36). Depression was associated with QOL in AD over short-term longitudinal follow-up, but the association was not statistically significant if both instruments are not administered to the same member of the patient-caregiver dyad. The choice of self- versus proxy-reported QOL should be intentionally considered in future studies as it may influence reported outcomes.

Impaired facial emotion recognition in relation to social behaviours in de novo Parkinson's disease.

Facial emotion recognition (FER) is a crucial component of social cognition and is essential in social-interpersonal behaviour regulation. Although FER impairment is well-established in advanced PD, data about FER at the time of diagnosis and its relationship with social behavioural problems in daily life are lacking. The aim was to examine FER at the time of PD diagnosis compared to a matched healthy control (HC) group and to associate FER with indices of social behavioural problems. In total, 142 de novo, treatment-naïve PD patients and 142 HC were included. FER was assessed by the Ekman 60 faces test (EFT). Behavioural problems in PD patients were assessed using the Dysexecutive Questionnaire (DEX-self and DEX-proxy) and the Apathy Evaluation Scale (AES-self). PD patients had significantly lower EFT-total scores (p = .001) compared to HC, with worse recognition of Disgust (p = .001) and Sadness (p = .016). Correlational analyses yielded significant correlations between AES-self and both EFT-total (rs = .28) and Fear (rs = .22). Significant negative correlations were found between DEX-proxy and both EFT-total (rs = -.28) and Anger (rs = -.26). Analyses of DEX-subscales showed that proxy ratings were significantly higher than patient-ratings for the Social Conventions subscale (p = .047). This DEX-proxy subscale had the strongest correlation with EFT-total (rs = -.29). Results show that de novo PD patients already show impaired FER compared to HC. In addition, lower FER is linked to self-reported apathy and proxy-reported social-behavioural problems, especially concerning social conventions. These findings validate the importance of the inclusion of social cognition measures in the neuropsychological assessment even in early PD.

Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care.

Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care.

Interrater agreement between children’s self-reported and their mothers’ proxy-reported dental anxiety: a Chinese cross-sectional study

BackgroundChildren's dental anxiety is common in dental clinics. This study aimed to determine the interrater agreement between children’s self-reported and their mothers’ proxy-reported dental anxiety and its affecting factors.MethodsIn this cross-sectional study performed in a dental clinic, primary school students and their mothers were assessed for enrollment eligibility. The Modified Dental Anxiety Scale plus Facial Image Scale (MDAS-FIS) was employed to test both the children’s self-reported and their mothers’ proxy-reported dental anxiety independently. The interrater agreement was analyzed using percentage agreement and the linear weighted kappa (k) coefficient. Factors affecting children’s dental anxiety were analyzed using univariate and multivariate logistic regression models.ResultsOne hundred children and their mothers were enrolled. The median ages of the children and mothers were 8.5 and 40.0 years old, respectively, and 38.0% (38/100) of the children were female. The scores of children’s self-reported dental anxiety were significantly higher than their mothers' proxy-reported dental anxiety (MDAS-Questions 1–5, all p < 0.05); moreover, there was no agreement between the two groups in terms of all anxiety hierarchies (kappa coefficient = 0.028, p = 0.593). In the univariate model, a total of seven factors (age, gender, maternal anxiety, number of dental visits, mother’s presence or absence, oral health status, and having siblings or not) were involved for analysis, and age [every 1-year increase, odds ratio (OR) = 0.661, 95% confidence interval (CI) = 0.514–0.850, p = 0.001], several dental visits (every 1 visit increase, OR = 0.409, 95% CI = 0.190–0.880, p = 0.022), and mother presence (OR = 0.286, 95% CI = 0.114–0.714, p = 0.007) were affecting factors. In the multivariate model, only age (every 1 year increase) and maternal presence were associated with 0.697-fold (95% CI = 0.535–0.908, p = 0.007) and 0.362-fold (95% CI = 0.135–0.967, p = 0.043) decreases in the risk of children’s dental anxiety during dental visits and treatment, respectively.ConclusionThere was no significant agreement between elementary school students’ self-reported dental anxiety and mothers’ proxy ratings of children’s dental anxiety, which suggests that self-reported dental anxiety by children should be encouraged and adopted, and the mother’s presence during dental visits is strongly recommended.

Exploring spirituality and quality of life in individuals who are deaf and have intellectual disabilities.

While positive contributions of religion and spirituality (R/S) to quality of life (QOL) are confirmed by a growing body of evidence, only limited research has involved people with intellectual disabilities and so far, no studies included prelingually deaf individuals with intellectual disabilities. This study explores the role of R/S in people with intellectual disabilities and deafness living in three therapeutic living communities specifically adapted to their needs. Forty-one individuals (mean age: 46.93years, 43.9% female) with prelingual deafness and mild to moderate intellectual disability participated in structured sign language interviews adapted to their cognitive-developmental level, regarding their QOL, individual spirituality and participation in spiritual practices in the community. Participants' QOL was assessed with an established short measure for QOL (EUROHIS-QOL) adapted to easy-to-understand sign language. With 21 participants, qualitative interviews were conducted. In addition, proxy ratings from caregivers were obtained. The participants' ratings of their individual spirituality (r = 0.334; p = 0.03) and spiritual practices-in-community (r = 0.514; p = 0.00) correlated positively with their self-reported QOL. Qualitative findings illustrate the importance of R/S and give insights into R/S concepts and practices. Personal spirituality and participating in spiritual practices are positively related to self-reported quality of life in deaf individuals with intellectual disability (ID). As a consequence, access to spiritual and religious services should be included in comprehensive programs and society at large.

Psychometric Properties of the German Version of the Rivermead Post-Concussion Symptoms Questionnaire in Adolescents after Traumatic Brain Injury and Their Proxies

The Rivermead Post-Concussion Symptoms Questionnaire (RPQ) assesses post-concussion symptoms (PCS) after traumatic brain injury (TBI). The current study examines the applicability of self-report and proxy versions of the German RPQ in adolescents (13-17 years) after TBI. We investigated reliability and validity on the total and scale score level. Construct validity was investigated by correlations with the Post-Concussion Symptoms Inventory (PCSI-SR13), Generalized Anxiety Disorder Scale 7 (GAD-7), and Patient Health Questionnaire 9 (PHQ-9) and by hypothesis testing regarding individuals' characteristics. Intraclass correlation coefficients (ICC) assessed adolescent-proxy agreement. In total, 148 adolescents after TBI and 147 proxies completed the RPQ. Cronbach's α (0.81-0.91) and McDonald's ω (0.84-0.95) indicated good internal consistency. The three-factor structure outperformed the unidimensional model. The RPQ was strongly correlated with the PCSI-SR13 (self-report: r = 0.80; proxy: r = 0.75) and moderately-strongly with GAD-7 and PHQ-9 (self-report: r = 0.36, r = 0.35; proxy: r = 0.53, r = 0.62). Adolescent-proxy agreement was fair (ICC [2,1] = 0.44, CI95% [0.41, 0.47]). Overall, both self-report and proxy assessment forms of the German RPQ are suitable for application in adolescents after TBI. As proxy ratings tend to underestimate PCS, self-reports are preferable for evaluations. Only if a patient is unable to answer, a proxy should be used as a surrogate.