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The assessment of quality of life is critical in ascertaining the benefit of interventions aimed to reduce morbidity among individuals with cognitive impairment. However, the assessment of quality of life is challenging in this population due to the uncertain validity of patient responses as cognitive function declines. Hence, we examined the level of agreement between patient and proxy assessments of health related quality of life (HRQoL) and wellbeing based on the domains that comprise each of these constructs. Analysis of baseline data from 71 community-dwelling older adults with mild Vascular Cognitive Impairment (VCI) who participated in a six-month proof-of-concept single-blinded randomized trial. Level of agreement between patient and caregiver ratings of HRQoL (EQ-5D-3L) and wellbeing (ICECAP-O) were compared using raw agreement (%), intraclass correlation coefficient (ICC) and weighted Cohen's kappa statistic. Self-care (assessed via the EQ-5D-3L) demonstrated almost perfect raw agreement between the patient and caregiver ratings. Three domains (mobility, pain and anxiety) of the EQ-5D-3L demonstrated fair agreement between the patient and caregiver ratings. Two (attachment and control) of the five ICECAP-O domains demonstrated slight agreement. The ICC indicated good agreement for the EQ-5D-3L and poor agreement for the ICECAP-O. There is better patient-proxy agreement for the EQ-5D-3L compared with the ICECAP-O among individuals with mild VCI. These findings imply that the ICECAP-O may have limited clinical, research and policy related utility among individuals with mild VCI. ClinicalTrials.gov NCT01027858.

Background Telephone interviews have become established as an alternative to traditional mail surveys for collecting epidemiological data in public health research. However, the use of telephone and mail surveys raises the question of to what extent the results of different data collection methods deviate from one another. We therefore set out to study possible differences in using telephone and mail survey methods to measure health-related quality of life and emotional and behavioural problems in children and adolescents. Methods A total of 1700 German children aged 8-18 years and their parents were interviewed randomly either by telephone or by mail. Health-related Quality of Life (HRQoL) and mental health problems (MHP) were assessed using the KINDL-R Quality of Life instrument and the Strengths and Difficulties Questionnaire (SDQ) children's self-report and parent proxy report versions. Mean Differences (\"d\" effect size) and differences in Cronbach alpha were examined across modes of administration. Pearson correlation between children's and parents' scores was calculated within a multi-trait-multi-method (MTMM) analysis and compared across survey modes using Fisher-Z transformation. Results Telephone and mail survey methods resulted in similar completion rates and similar socio-demographic and socio-economic makeups of the samples. Telephone methods resulted in more positive self- and parent proxy reports of children's HRQoL (SMD ≤ 0.27) and MHP (SMD ≤ 0.32) on many scales. For the phone administered KINDL, lower Cronbach alpha values (self/proxy Total: 0.79/0.84) were observed (mail survey self/proxy Total: 0.84/0.87). KINDL MTMM results were weaker for the phone surveys: mono-trait-multi-method mean r = 0.31 (mail: r = 0.45); multi-trait-mono-method mean (self/parents) r = 0.29/0.36 (mail: r = 0.34/0.40); multi-trait-multi-method mean r = 0.14 (mail: r = 0.21). Weaker MTMM results were also observed for the phone administered SDQ: mono-trait-multi-method mean r = 0.32 (mail: r = 0.40); multi-trait-mono-method mean (self/parents) r = 0.24/0.30 (mail: r = 0.20/0.32); multi-trait-multi-method mean r = 0.14 (mail = 0.14). The SDQ classification into borderline and abnormal for some scales was affected by the method (OR = 0.36-1.55). Conclusions The observed differences between phone and mail surveys are small but should be regarded as relevant in certain settings. Therefore, while both methods are valid, some changes are necessary. The weaker reliability and MTMM validity associated with phone methods necessitates improved phone adaptations of paper and pencil questionnaires. The effects of phone versus mail survey modes are partly different across constructs/measures.

Data from a national study showed that more than one quarter of older adults who died between 2000 and 2006 required decision making at the end of life but lacked decision-making capacity. Most of these subjects had advance directives (living wills, health care proxies, or both) and received care consistent with their preferences. These findings suggest that advance directives are valuable. This national study showed that more than one quarter of older adults who died between 2000 and 2006 required decision making at the end of life but lacked decision-making capacity. Most of these subjects had advance directives and received care consistent with their preferences. Advance directives document patients' wishes with respect to life-sustaining treatment (in a living will), their choice of a surrogate decision maker (in a durable power of attorney for health care), or both. First sanctioned in 1976, advance directives were designed to protect patient autonomy 1 under the belief that patients who lose decision-making capacity are more likely to receive the care they want if they choose a surrogate decision maker, document their wishes in advance, or both. To promote the use of advance directives, Congress passed the Patient Self-Determination Act in 1990 2 mandating that all Medicare-certified institutions provide written information regarding . . .

Purpose Caregivers, or proxies, often complete patient-reported outcome measures (PROMs) on behalf of patients with stroke. The objective of our study was to assess the validity and responsiveness of proxy-responses compared to patient-responses across multiple domains of health. Methods Stroke patients and their proxies were recruited to complete PROMs between 7/2018–11/2019. PROMs included Neuro-QoL cognitive function, PROMIS physical function, satisfaction with social roles, anxiety, fatigue, pain interference, sleep disturbance, Global Health, and PHQ-9. Internal consistency and convergent validity were compared between patient- and proxy-reported measures. Known-groups validity was assessed across levels of stroke disability. Internal responsiveness was evaluated using paired t-tests for a subset of patients who attended rehabilitation following stroke. Analyses were stratified by patients ≤ 3 vs > 3 months from stroke. Results This cross-sectional study included 200 stroke patients (age 62.2 ± 13.3, 41.5% female) and their proxies (age 56.5 ± 13.9, 70% female, 72% spouses). PROMs had high internal consistency and were significantly correlated for patients and proxies. Patient- and proxy-reported measures worsened with increasing stroke disability. For 34 (17%) patients who attended rehabilitation, patients self-reported improvement on 5 domains whereas proxies reported no improvement. Compared to patient self-reports, validity was worse for proxy-reports on patients ≤ 3 months but better > 3 months from stroke. Conclusions Both patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients ≤ 3 months from stroke but better validity for patients > 3 months from stroke. These findings justify the utilization of proxy responses in stroke patients > 3 months from stroke.

Background: The aging society will bring an increase in the number of people with dementia living in the community. This will mean a greater demand on care and welfare services to deliver efficient and customized care, which requires a thorough understanding of subjective and objective care needs. This study aims to assess the needs of community-dwelling people with dementia as reported by themselves and by their informal carers. The study also aims to give insight into the service use and gaps between needs and the availability of services. Methods: 236 community-dwelling people with dementia and 322 informal carers were interviewed separately. (Un)met needs were assessed using the Camberwell Assessment of Needs for the Elderly (CANE). Results: Most unmet needs were experienced in the domains of memory, information, company, psychological distress and daytime activities. People with dementia reported fewer (unmet) needs than their carers. Type and severity of dementia, living situation and informal carer characteristics were related to the number of reported needs. Conclusions: This study showed a large number of unmet needs in dementia. Reasons for unmet needs are lack of knowledge about the existing service offer, a threshold to using services and insufficient services offer. These results provide a good starting point for improving community care for people with dementia.

Background Child welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour. Thus, Quality of Life (QoL) should be an important outcome measure in Residential Youth Care (RYC) institutions. However, the dearth of research in this area gives rise to serious concern. The present study is the first large scale, nationwide study assessing QoL among adolescents living in RYC. To provide a reference frame, adolescent self- and primary contact proxy reports were compared to the general population and to adolescent outpatients in Child and Adolescent Mental Health Service (CAMHS). Also, we investigated the association between self-report of QoL in adolescents living in RYC and proxy reports of their primary contacts at the institution. Methods All residents between the ages of 12–23 years living in RYC in Norway were the inclusion criteria. Eighty-six RYC institutions (with 601 eligible youths) were included, 201 youths/ parents did not give their consent. Finally, 400 youths aged 12–20 years participated, yielding a response rate of 67 %. As a reference frame for comparison, a general population ( N  = 1444) and an outpatient sample of adolescents in CAMHS ( N  = 68) were available. We used the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). General Linear Model analyses (ANCOVA) were conducted with five KINDL life domains as dependent variables and group as independent variable. Results Self- and proxy reports of QoL in adolescents living in RYC revealed a significantly ( p  < 0.001) poorer QoL compared to the general population on the life domains Physical- and Emotional well-being, Self-esteem, and relationship with Friends. Adolescents evaluated their physical well-being as worse compared to adolescents in CAHMS. Self- and proxy reports in RYC differed significantly on two of five life domains, but correlated low to moderate with each other. Conclusions The results in this study raise major concerns about the poor QoL of the adolescents living in RYC, thereby challenging the child welfare system and decision makers to take action to improve the QoL of this group. The use of QoL as outcome measures is highly recommended.

Research into different patient populations suggests that, on average, proxies report poorer health-related quality of life (HRQoL) compared to self-reports. We aimed to investigate whether the difference between proxy reports and self-reports (interrater gap) varies across the whole range of self-reports from low to high HRQoL scores. A cross-sectional study in 16 Dutch nursing home (NH) dementia special care (DSC) units (n = 256) and 17 somatic units (n = 326). Professional carers, blinded to self-reports, provided EuroQol-5D scores from two perspectives: their own perspective (proxy–proxy) of the patients' HRQoL and the estimation of the patient's view (proxy–patient). The interrater gap varied linearly in both DSC and somatic patients from proxy scores overestimating low self-reports to proxy scores underestimating high self-reports. This attenuation tendency existed for both proxy–proxy and proxy–patient perspectives. The interrater gap tended to be smaller for the proxy–patient perspective. Proxies (professional carers) tend to attenuate self-reports in NH patients with and without dementia toward moderate scores rather than report systematically poorer HRQoL. A proxy–patient perspective may be preferable to a proxy–proxy perspective for the purpose of estimating self-reports. Further research into other populations is needed to understand whether the attenuation tendency is a general phenomenon.

Background Few studies have evaluated changes on parent–child agreement in HRQOL over time. The objectives of the study were to assess parent–child agreement on child’s HRQOL in a 3-year longitudinal study, and to identify factors associated with possible disagreement. Methods A sample of Spanish children/adolescents aged 8–18 years and their parents both completed the KIDSCREEN-27 questionnaire. Data on age, gender, family socioeconomic status (SES), and mental health (Strengths and Difficulties Questionnaire, SDQ) was also collected at baseline (2003), and again after 3 years (2006). Changes in family composition were collected at follow-up. Agreement was assessed through intraclass correlation coefficient (ICC), and Bland and Altman plots. Generalizing Estimating Equation (GEE) models were built to analyze factors associated with parent–child disagreement. Results A total of 418 parent–child pairs were analyzed. At baseline the level of agreement on HRQOL was low to moderate and it was related to the level of HRQOL reported. Physical well-being at baseline showed the highest level of parent–child agreement (ICC=0.59; 0.53-0.65) while less “observable” dimensions presented lower levels of agreement, (i.e. Psychological well-being: ICC= 0.46; 0.38-0.53). Agreement parent–child was lower at follow-up. Some interactions were found between rater and child’s age; with increasing age, child scored lower than parents on Parents relationships and Autonomy (Beta [B] -0.47; -0.71 / -0.23) and the KIDSCREEN-10 (−0.49; -0.73 /-0.25). Conclusions Parent–child agreement on child’s HRQOL is moderate to low and tends to diminish with children age. Measuring HRQOL of children/adolescents mainly in healthy population samples might require direct self-assessments.

This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and communication. However, there are serious doubts about the validity of proxy data for subjective issues. One important challenge with secondary analysis of population-based data sets is the difficulty of accurately identifying survey participants with intellectual disabilities. In both areas examined, it is important to recognize these constraints when interpreting research based on such data.

Background There is a lack of evidence for the role of loneliness on suicide using psychological autopsy method, and the validity of proxy informants’ reports on loneliness is not well established. This study aimed to investigate the validity of proxy respondent reports on loneliness, and the reliability and validity of the University of California Los Angeles Loneliness Scale-6 (ULS-6) as used in psychological autopsy method with rural elderly people in China. Methods Two hundred forty-two suicide cases and 242 normal community controls were selected, and the psychological autopsy method was utilized to collect information. Data from proxy respondents of the living controls were compared with data reported by the targets (gold standards). Results Subject-proxy concordance for ULS-6 was fair (ICC = 0.447) in the living controls. The suicide cases were more likely to have a higher score of ULS-6 than the living controls. Additionally, our data supported that ULS-6 had adequate psychometric properties in both suicide and control groups: factor analyses yielded one-factor component solution; Cronbach’s alpha (both > 0.90) demonstrated excellent internal consistency; the Spearman correlation analysis indicated that the ULS-6 score was positively correlated with depression; and negatively correlated with QOL and social support. Conclusions Results support proxy-based data on loneliness in research of suicide in older adults in rural China, and the ULS-6 is a psychometrically sound instrument for measuring loneliness in psychological autopsy studies.