Proxy Reports Research Articles

The Difference in the Quality of Life of Korean Children With Attention-Deficit/Hyperactivity Disorder Between Before and After COVID-19.

ObjectivesThis study aimed to compare the quality of life (QoL) of children with attention-deficit/hyperactivity disorder (ADHD) before and during coronavirus disease-2019 (COVID-19) and to examine how their QoL is affected by emotional and environmental factors during COVID-19.MethodsParticipants in the pre-COVID-19 (n=43) and COVID-19 (n=36) groups were recruited from the same university hospital. The Pediatric Quality of Life Inventory (PedsQL) 4.0 Child Self-report, the Children’s Depression Inventory (CDI), the Revised Children’s Manifest Anxiety Scale (RCMAS), the PedsQL 4.0 Parent Proxy Report, and the Conners’ Parent Rating Scale (CPRS) were employed. Independent t-tests, Pearson’s correlation analysis, and multiple regression analysis were conducted.ResultsCaregivers assessed the children’s QoL more negatively than the children themselves in both groups. Children with ADHD evaluated their physical function more negatively and anxiety was significantly higher in the COVID-19 group. In the COVID-19 group, the PedsQL child self-report was significantly predicted by the CPRS, the CDI, and environmental factors (i.e., relation to child and monthly household income).ConclusionChildren with ADHD in the COVID-19 group had a numerically lower QoL and significantly higher anxiety. To improve QoL, it is important to deal with not only depression but also ADHD symptoms and environmental factors.

Psychometrics of the Physical Resilience Scale in Older Adults Living with Dementia: Proxy Responses.

Objectives: The purpose of this study was to determine if proxies can complete the Physical Resilience Scale for older adults living with dementia. Methods: This was a descriptive study using Rasch analysis and baseline data from the Function Focused Care for Acute Care Using the Evidence Integration Triangle trial. The first 240 patients living with dementia were included in this analysis. Results: There was evidence of reliability based on person and item separation index. There was no evidence of Differential Item Functioning (DIF) between genders and a DIF by race on Item 7. Validity was supported based on items fitting the model with the exception of one item, and a significant relationship between physical resilience and pain and function. Discussion: There is some evidence that the Physical Resilience Scale is reliable and valid when completed by proxy reports. Future use should remove one of the items due to redundancy.

Cross-Cultural Validation of Health and Quality of Life Measures for Children in Hong Kong.

Objective The Pediatric Quality of Life Inventory (PedsQL™) 4.0 is a health-related quality of life (HRQOL) measure designed for clinical practice and research, health policy evaluation, and general population surveys. There is a dearth of instruments measuring quality of life in children which are available in Chinese and validated for Chinese populations. Therefore, this study attempted to establish the Hong Kong populations' norms for the Chinese version of PedsQL™ and examined the psychometric properties of the measure for this population. Methods Sixty-nine children (aged 7 to 12 years) and their parents completed the child self-report and the parent proxy report, respectively, of the PedsQL™ 4.0 Generic Module. To evaluate construct validity, a group comparison of children with special educational needs (SEN) (n = 21) and those with typical development (TD) (n = 48) was conducted. Differences based on age group and gender and parent–child agreement on the perception of the child's HRQOL were also examined. Results Children with SEN had a lower quality of life perception than those with TD in the physical, social, and schooling domains. No significant differences in emotional health were found between the two groups. The differences between the children with SEN and with TD varied based on age group and gender. The differences between the parents' and children's perceptions of the children's HRQOL were insignificant in this sample. Conclusion Norms for the Chinese version of the PedsQL™ 4.0 Generic Module for the Hong Kong population were established in the study, and both the child self-report and parent proxy report were found to be reliable and valid for this population.

Racial Differences in Antidepressant Use in Nursing Facility Residents With Moderate to Severe Cognitive Impairment.

Objective To describe and compare the use of antidepressants between Black or African descent and White nursing facility residents with moderate to severe cognitive impairment. Design This was a secondary data analysis using baseline data from the Function and Behavior Focused Care for Nursing Facility Residents with Dementia randomized control trial. Setting Participants were recruited from 10 urban and two rural nursing facilities from Maryland. Methods Participants had to be 55 years of age or older, English-speaking, reside in long-term care at time of recruitment, and score a 15 or less on the Mini Mental-State Examination. A total of 336 residents participated at baseline. Data were collected by a research evaluator through observation, proxy report from staff caring for the resident the day of testing, and patient charts. Main Outcomes A significant difference of antidepressant use between Black or African descent and White nursing facility residents with moderate to severe cognitive impairment would be noted when controlling for depression, age, gender, functional status, agitation, and number of co-morbidities. Results In adjusted models, Black or African descent residents were less likely to be prescribed antidepressants compared with White residents. Conclusion Racial differences were noted regarding antidepressant use among nursing facility residents with moderate to severe cognitive impairment, but it is unknown if race could impact prescribing practices when indications for use are known. Further research is needed to ascertain if knowing the specific indications for use might contribute to racial disparities with antidepressant prescribing in nursing facility residents with moderate to severe cognitive impairment.

Comparing health-related quality-of-life scores in well-controlled asthmatic children and adolescents with their parents using PedsQL 3.0 asthma scales in our practice

Introduction Bronchial asthma strongly affects the health-related quality of life (HRQOL) of children in many aspects including physical, emotional, social, and school functioning. Child self-reports of QOL are valid for measuring HRQOL, but the parent proxy reports also provide additional important information. Aim To assess the agreement between the child self-reports of HRQOL and the parent proxy reports among the children and adolescents with well-controlled bronchial asthma. Patients and methods This cross-sectional study was conducted on 75 asthmatic patients aged between 8 and 18 years and their parents who were being followed up in the allergy outpatient clinic in the Department of Pediatrics, Cairo University. HRQOL was assessed by the PedsQL 3.0 asthma module. Results The mean±SD age of the patients was 10.08±1.70 years. Distribution of agreement between patients and parents showed that 40 (53.3%) cases showed agreement in different domains. Agreement between child and parent-by-proxy was 54.3% in the asthma domain, 45.3% in the treatment domain, 34.7% in the worry domain, and 17.3% in the communication domain. A statistically significant correlation was found between QOL in child and parent in all domains; the correlation was strong in the asthma and worry domains and weak in the treatment and the communication domains, where in the asthma domain, confidence interval (CI) was 0.803 (0.690–0.875), with a P value of 0.000; in the treatment domain, CI was 0.305 (0.080–0.499), with a P value of 0.009; in the worry domain, CI was 0.539 (0.357–0.682), with a P value 0.000; and finally, in the communication domain, the CI was 0.374 (0.163–0.552), with a P value of 0.000. Conclusion There was a lack of convergence between the child self-report and the parent’s report of the PedsQL 3.0 asthma module. Asthmatic children’s self-reports were more accurate than parent proxy reports for the assessment of HRQOL. Parent proxy reports should be spared to very young children or children who lack the logical or analytical ability needed for answering the questionnaire.

Psychometric properties of the Thai version of the Scale of Oral Health Outcomes for 5-year-old children.

As caries prevalence in Thai preschool children is very high and its consequences have scarcely been evaluated, the Scale of Oral Health Outcomes for 5-year-old children (SOHO-5) is considered as an appropriate tool to measure the children's oral health-related quality of life (OHRQoL). To translate the SOHO-5 into Thai (Th-SOHO-5) and assess its psychometric characteristics. The cross-cultural adaptation of the SOHO-5 into Thai comprised forward-backward translation by experts and face validation by 20 child-parent dyads. To evaluate psychometric properties of the final version, a cross-sectional study was conducted on 306 child-parent pairs using an interview mode for children and a self-administered mode for parents. A trained investigator examined children's caries status. The Th-SOHO-5 showed satisfactory psychometric characteristics. Cronbach's alpha values were above 0.8 for both child and proxy reports. Overall intraclass correlation coefficients were > 0.9. Factor analysis supported a single-factor structure model of the Th-SOHO-5 and showed an excellent fit. Th-SOHO-5 scores were correlated with all global rating scales of oral health and well-being. Children with higher caries experience or caries with pulpal involvement demonstrated significantly higher Th-SOHO-5 scores. The Th-SOHO-5 possessed good reliability and validity. It can be used to evaluate the OHRQoL of preschool children in Thailand.

Putting “ME” into measurement: Adapting self-report health measures for use with individuals with intellectual disability

BackgroundSelf-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID. AimsThis paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest). Methods and proceduresWe used an inclusive research approach, in which we collaborated with adults with ID to revise, cognitively test, and pilot test cognitively accessible self-report measures. Technology supported the independent completion of measures. We assessed usability, usefulness, and reliability of these measures in 41 adults with ID. Outcomes and resultsThe resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest). Conclusions and implicationsSelf- report by adults with ID is feasible. A key element of this measure adaptation process was engaging adults with ID. More research is needed to understand the reliability and validity of the adapted measures and the characteristics of the population for whom they are most usable.

Associations of Modifiable Behavioral Risk Factor Combinations at 65 to 74 Years Old With Cognitive Health Span for 20 Years.

Behavioral risk factors for dementia tend to co-occur and interrelate, especially poor diet, physical inactivity, sleep disturbances, and depression. Having multiple of these modifiable behavioral risk factors (MBRFs) may predict a particularly shortened cognitive health span and therefore may signal high-risk status/high intervention need. These secondary analyses of data from the Cardiovascular Health Study included 3149 participants aged 65 to 74 years (mean [standard deviation {SD}] age = 69.5 [2.5] years; 59.6% female). MBRF exposures were self-reports regarding a) diet, b) activity, c) sleep, and d) depression symptoms. We primarily analyzed MBRF counts. For up to 26 years of follow-up, we assessed the a) number of remaining cognitively healthy life-years (CHLYs) and b) percentage of remaining life-years (LYs) that were CHLYs (%CHLY). We estimated CHLYs as time before a dementia diagnosis, cognitive screener scores indicating impairment, proxy report indicating significant cognitive decline, or dementia medication use. Participants averaged a remaining 16 LYs (SD = 7 LYs), 12.2 CHLYs (SD = 6.6 CHLYs), and 78.1% of LYs being CHLYs (SD = 25.6 CHLYs). Compared with having no MBRFs, having one was associated with ~1 less LY and CHLY, but not a relatively lower %CHLY. In contrast, having 3+ MBRFs was associated with about 2 to 3 fewer LYs and CHLYs as well as about 6% lower %CHLY (95% confidence interval = -9.0 to -2.5 %CHLYs; p = .001). MBRF-related reductions in the cognitive health span are most apparent when people have multiple MBRFs. Future research is needed to determine if/how behavioral risks converge mechanistically and if dementia prevention efficacy improves when targeting MBRF combinations.

Relations among parent-reported physical activity and interoception in children

BackgroundInteroception is the sense of one's internal body and emotional state; it plays a critical role in guiding self-regulatory behaviors. Physical activity (PA) can support interoceptive processes, but limited research has examined the association in children. This study explored the relations among parent-reported PA and several interoceptive domains in children aged 3 – 10 years old. MethodsBaseline data were analyzed from a cluster-randomized controlled study examining a yoga intervention (N = 122). Parents completed a questionnaire that included the Caregiver Questionnaire for Interoceptive Awareness, Second Edition (CQIA-2) and two measures of PA, the PROMIS Parent-Proxy Short Form (PROMIS-PA) and the adapted Burdette Proxy Report (aBPR-PA). Psychometrics of the CQIA-2 subscales were assessed and then used in subsequent analyses to examine the association between PA and interoceptive sensibility. ResultsSeventy percent of the surveys were completed by mothers (30% by fathers), and their children (56% female, Mage = 5.81 ± 1.7 years) were predominately white. Across all children, PA had a significant positive relationship with interoceptive domains related to emotion and physical energy (p < 0.01). Children who met the PROMIS-PA “good” cutoff had a clearer sense of emotion and physical energy (F(2,115) = 4.30, p = 0.016, R2 = 0.070), compared to children who did not. Children's age predicted interoceptive sensibility of illness and toileting needs (F(1,116) = 14.16, p < 0.001, R2 = 0.109). ConclusionChildren with higher PA levels were perceived to have better interoceptive sensibility of emotion and physical energy. Children's age was predictive of interoceptive domains representing the awareness of illness and toileting needs. Future work should consider incorporating direct measures of PA and child-reported interoceptive sensibility. A better understanding of their relationship will likely help guide the design of more effective interventions for health behavior development.

Pilot Randomized Control Trial of an App-Based CBT Program for Reducing Anxiety in Individuals with ASD without Intellectual Disability.

This study developed and tested the effectiveness of an app-based cognitive behavioral therapy (CBT) program in alleviating anxiety among adolescents and adults with autism without co-occurring intellectual disability. Thirty participants from 15 to 35years old were randomly assigned to either the intervention or waitlist control group, and self- and caregiver proxy report questionnaires were administered, accompanied by direct behavior observation before and after the intervention period. There was a significant decrease in anxiety level, an increase in positive affect, and a decline in stereotypic behaviors, hyperactivity, noncompliance, and inappropriate speech in proxy reports for the intervention group, compared to the control group. A significant rise in passive response in the direct observation was also seen in the intervention group.

A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL). Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning. Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.

EQ-5D-Y-3L and EQ-5D-Y-5L proxy report: psychometric performance and agreement with self-report

BackgroundSelf-report is the standard for measuring people’s health-related quality of life (HRQoL), including children. However, in certain circumstances children cannot report their own health. For this reason, children’s HRQoL measures often provide both a self-report and a proxy-report form. It is not clear whether the measurement properties will be the same for these two forms. We investigated whether it would be beneficial to extend the classification system of the EQ-5D-Y proxy questionnaire from 3 to 5 response levels. The agreement between self-report and proxy-report was assessed for both EQ-5D-Y measures.MethodsThe study included 286 pediatric patients and their caregivers as proxies. At three consecutive measurements—baseline, test–retest and follow-up—the proxies assessed the child’s HRQoL using the EQ-5D-Y-3L, EQ-5D-Y-5L, the PedsQL Generic, and matched disease-specific instruments. The proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of feasibility, distribution properties, convergent validity, test–retest and responsiveness. Agreement between both EQ-5D-Y proxy versions to their respective self-report versions was assessed at baseline and follow-up.ResultsThe proportion of missing responses was 1% for the EQ-5D-Y-3L and 1.4% for the EQ-5D-Y-5L. The frequency of health state with no problems in all dimensions (11111) was slightly lower for the EQ-5D-Y-5L (21.3% vs 16.7%). Regarding the convergent validity with the PedsQL and disease-specific measures, the proxy versions of EQ-5D-Y-3L and EQ-5D-Y-5L had similar magnitudes of associations between similar dimensions. The means of test–retest coefficients between the two versions of the EQ-5D-Y proxy were comparable (0.83 vs. 0.84). Regarding reported improved conditions, responsiveness of the EQ-5D-Y-5L proxy (26.6–54.1%) was higher than that of the EQ-5D-Y-3L proxy (20.7–46.4%). Except for acutely ill patients, agreement between the EQ-5D-Y-5L proxy and self-reports was at least moderate.ConclusionsExtending the number of levels of the proxy version of EQ-5D-Y can improve the classification accuracy and the ability to detect health changes over time. The level structure of EQ-5D-Y-5L was associated with a closer agreement between proxy and self-report. The study findings support extending the EQ-5D-Y descriptive system from 3 to 5 levels when administered by a proxy, which is often the case in the pediatric population.

QOL-05. Cardiorespiratory fitness and health-related quality of life amongst survivors of childhood central nervous system tumours.

INTRODUCTION: Due to recent advancements in surgical techniques, imaging and adjuvant therapies, survival rates for children with central nervous system (CNS) tumours have improved. Research priorities have now shifted to focus on late-effects and quality of survivorship amongst childhood CNS tumour survivors. Our study aimed to assess levels of cardiorespiratory fitness and health-related quality of life (HRQoL) amongst survivors of childhood CNS tumours. A secondary aim was to investigate potential relationships between cardiorespiratory fitness and HRQoL. METHODS: Participants were recruited from the National Children’s Cancer Service in CHI Crumlin. Inclusion criteria included: diagnosis of a primary CNS tumour, aged between 6-17 years, between 3 months and 5 years post completion of oncology treatment, independent mobility, deemed clinically appropriate to participate by treating oncologist. Cardiorespiratory fitness was assessed using the six-minute walk test. HRQoL was assessed with the PedsQL Generic Core Scales, Version 4.0, both self-report and parent proxy report forms were used. RESULTS: 20 participants (n=9 male) were recruited with a mean age of 12.34 (SD = 3.46) years. Mean time since completion of oncology treatment was 2.31 (SD = 1.38) years. Mean 6-minute walk distance (6MWD) was 482.75 (SD = 50.04) metres, equating to the 5.55th (SD = 6.83th) percentile overall. 6MWD was significantly reduced compared to predicted 6MWD (t = -12.52, p <.001, 95% CI [-163.52, -116.68]). Parent proxy-reported HRQoL was significantly reduced compared to healthy population norms (t = -5.82, p <0.001, 95% CI [-25.76, -12.17]). A strong positive correlation exists between 6MWD and both parent-proxy (Pearson’s r = 0.533, p = 0.015) and child-reported HRQoL (r = 0.580, p = 0.007). CONCLUSION: Survivors of childhood CNS tumours present with impaired levels of cardiorespiratory fitness and HRQoL compared to healthy population norms. Higher levels of cardiorespiratory fitness are associated with higher levels of HRQoL.

SWK-07. Family mental health screening early after a diagnosis of pediatric brain tumor

INTRODUCTION: A new diagnosis of a brain tumor in a child has significant emotional consequences for every member of the family. Nevertheless, early phases of oncologic care rarely provide formal mental health screening. METHODS: We implemented a mental health screening protocol for families and patients with a newly diagnosed brain tumor admitted to our pediatric intensive care unit (PICU) at the time of diagnosis. Screening instruments were selected based on their previous validation and relevance to both a brain tumor diagnosis and PICU admission. Parents were contacted by a member of our team within 2 weeks of their child’s diagnosis, and completed the screening independently within the next 2 weeks via an online interface. Parent proxy reports for the children were used when necessary. Scores were shared with the family and neuro-oncology team. When indicated, supportive counseling was offered. RESULTS: Eighteen patients have met criteria for mental health screening. Of these, 8 patient and parent dyads have completed the screening (mean patient age 8.6 years; 75% white; 50% female). Of the families that completed the evaluation, most parents (62.5%) reported that their child’s diagnosis negatively impacted their health-related quality of life (HRQL), while 87.5% of children themselves reported a lower HRQL. Most children (66.7%) self-reported having symptoms outside of normal range for anger, anxiety and depression and 100% had scores outside of normal range for pain interference with their daily lives. Only half of eligible families accepted referrals for new mental health support. CONCLUSION: Both children with a new diagnosis of brain tumor and their parents are at risk for impaired mental health and quality of life early after diagnosis. A systematic approach to these concerns at the time of diagnosis may be helpful.

Depressive Symptoms of Centenarians during the COVID-19 Pandemic: Preliminary Results of an Exploratory Study in Switzerland

Introduction Depression is one of the most frequent mental health problems in older populations.1 To the best of our knowledge, the prevalence of depressive symptomatology (DS) among centenarians in Switzerland is unknown. Furthermore, the COVID-19 pandemic may have had a negative impact. As part of the study SWISS1002, we intend to provide key information on centenarians’ levels of DS.ObjectivesTo describe the DS of Switzerland’s centenarians during the COVID-19 pandemic.MethodsRandomly selected centenarians from across Switzerland and their proxy relatives were invited to participate. Data are collected via telephone. The questionnaire includes the assessment of DS via the Geriatric Depression Scale (GDS)– 5 items.3 Preliminary data were analysed using descriptive statistics.ResultsTelephone interviews were completed with 51 centenarians, and for 19 of them, proxy relatives also answered. The MAge of the centenarians was 101.41 (1.47) years, 34 (66.67%) were female and 27 (52.94%) lived at home. The mean score of the GDS–5 was 1.32 (SD=1.49). Considering a cut-off ≥2, 18 (36%) centenarians were screened positive for possible depression. Descriptive statistics indicated effects of gender (men: M=1.41, SD=1.46; women: M=1.27, SD=1.53) and living situation (private: M=1.07, SD=1.36; institution: M=1.61, SD=1.62). Centenarians’ and proxy reports were significantly related (ρ=0.56; p&lt;.05).ConclusionsClinically relevant DS are highly prevalent among centenarians during the COVID-19 pandemic (36%), which is consistent with a recent study4 reporting a prevalence of 32% in a sample of younger older adults (MAge: 77.6, SD=6.9). To conclude, DS in centenarians should be screened systematically, especially in this time of unprecedented health crisis.DisclosureNo significant relationships.

Translation and Validation of Urdu Version of Pediatric Quality of Life Inventory Generic Core Scale for Neoplase Children

Aim: To Translate and validate the Urdu version the Pediatric Quality of Life Inventory Generic Core Scale among neoplase children. Methods: The descriptive cross-cultural linguistic validation study in which PedsQL Generic core scale was conducted by following Bombardier, Beaton and Guillemin’s guidelines for cross cultural adaptation. The study was conducted in different phases i.e. translation and validation. The original English version of PedsQL was translated into Urdu by two individuals, one with an Urdu background and the other from a medical background, during the translation phase (T1, T2) (Forward translation). The T3, T4 Versions were then developed by two independent translators (one with an English background and the other with a medical background). The T1, T2, T3, and T4 versions were compared to the original English version and evaluated by a group of multilingual specialists, resulting in the T5-urdu version. Twenty pediatric rehab professionals were given the T5-urdu version to validate. Results: Chronbach’s alpha value of PedsQL of both child and parent reported after translation were 0.986 and 0.987 respectively and after testing on population were 0.956 and 0.910 respectively. P-values showed significant results which are &lt;0.05 in all domains. The inter domain correlations of child and parent reports after translation and testing on population were &gt;0.70 that interpreted good Pearson correlation. The interclass coeffieneint was ranged from 0.541-0.982. Conclusion: The Urdu version of PedsQL Generic Core Scale of Age 8-12 years both child and parent proxy report is valid for neoplase children. Keywords: Children, Health Related Quality of Life, Neoplase, Pediatric Quality of Life Inventory, Translation, Validation.

Measuring Subjective Cognitive Decline in Older Adults: Harmonization Between the Cognitive Change Index and the Measurement of Everyday Cognition Instruments.

Self and informant (proxy or study partner) reports of everyday cognitive functioning have been shown to be associated with incipient neurodegenerative disease. The 20-item Cognitive Change Index (CCI) and the 39-item Measurement of Everyday Cognition (ECog) were each developed to characterize early subjective changes in cognitive function. We examined the relationship between CCI and ECog self and informant-based evaluations to determine content overlap and provide a co-calibration for converting between these widely used instruments. 950 participants (57.1% female, mean age = 71.2 years) from ADNI and the Indiana ADRC with self-based evaluations and 279 participants (60.9% female, mean age = 71.8 years) with informant-based evaluations (Indiana ADRC) were included. Analyzed variables for the CCI and ECog included domain mean scores, memory domain total scores, and total scores for all items. Spearman correlations, regression analyses, and frequency distributions were used to assess the relationship between CCI and ECog. Sex, age, years of education, race/ethnicity, APOE ɛ4 carrier status, and baseline diagnosis were also analyzed as potentially relevant covariates. CCI and ECog total scores were highly correlated for the self (r = 0.795, p < 0.001) and informant-based (r = 0.840, p < 0.001) versions, as expected. Frequency distributions of self and informant total scores were generated and plotted separately. Quadratic regressions for self (r2 = 0.626) and informant (r2 = 0.741) scores were used to create a translation table between the CCI and ECog total scores. Self and informant total scores can be harmonized and translated between the CCI and ECog to facilitate cross-study and longitudinal assessment of perceived cognitive change, an important patient-reported outcome.

Addressing the Need for Better Measures of Positive Health.

Addressing the Need for Better Measures of Positive Health.

Agreement between older adult patient and caregiver proxy symptom reports

BackgroundProxy report is essential for patients unable to complete patient-reported outcome (PRO) measures themselves and potentially beneficial when the caregiver perspective can complement patient report. In this study, we examine agreement between self-report by older adults and proxy report by their caregivers when completing PROs for pain, anxiety, depression, and other symptoms/impairments.MethodsFour PROs were administered by telephone to older adults and their caregivers followed by re-administration within 24 h in a random subgroup. The PROs included the PHQ-9 depression, GAD-7 anxiety, PEG pain, and SymTrak multi-dimensional symptom and functional status scales.ResultsThe sample consisted of 576 older adult and caregiver participants (188 patient-caregiver dyads, 200 patients without identified caregiver). The four measures had good internal (Cronbach’s alpha, 0.76 to 0.92) and test–retest (ICC, 0.63 to 0.92) reliability whether completed by patients or caregivers. Total score and item-level means were relatively similar for both patient and caregiver reports. Agreement for total score as measured by intraclass correlation coefficient (ICC) was better for SymTrak-23 (0.48) and pain (0.58) than for anxiety (0.28) and depression (0.25). Multinomial modeling showed higher (worse) patient-reported scale scores were associated with caregiver underreporting, whereas higher caregiver task difficulty was associated with overreporting.ConclusionWhen averaged over individuals at the group level, proxy reports of PRO scores by caregivers tend to approximate patient reports. For individual patients, proxy report should be interpreted more cautiously for psychological symptoms as well as when patient-reported symptoms are more severe, or caregiver task difficulty is high.

Effects of music interventions on sleep in people with dementia: A systematic review

Poor sleep health is a risk factor for and a common symptom of dementia. Music has been shown to improve sleep across a wide range of clinical and community populations. However, it is unclear whether and to what extent music interventions may also help alleviate sleep problems in people with dementia. This systematic review is the first review examining the effects of music on sleep outcomes among people with dementia. In accordance with PRISMA guidelines, we extracted 187 articles from nine databases (Academic Search Premier, Ageline, APA PsycArticles, PsycINFO, CINAHL, Embase, PubMed, Scopus, and Web of Science). Eight studies were eligible for this systematic review (Range sample sizes: 1-59 people with dementia). Results revealed that assessments of sleep in the current literature were limited and mainly focused on sleep duration, subjective sleep quality, or nighttime sleep disturbances. Intervention delivery, music selection, and findings varied. Positive effects of music on sleep outcomes were observed in six out of the eight studies (75%), specifically there were decreases in nighttime sleep disturbances, increases in daytime alertness, and improvements in sleep quality. The remaining two studies found no statistically significant change in sleep outcomes (i.e., daytime sleepiness and quality). Study limitations included small sample sizes and the use of proxy reporters (e.g., caregiver, researcher, blinded clinician) which may reduce the accuracy of the sleep measures. Future research may want to incorporate objectively measured sleep to better understand the role of sleep in dementia care. More research is needed to determine whether music interventions are effective in improving sleep in people with dementia and whether improvements in sleep can slow the progression of dementia.