Agreement between child self-report and parent-proxy report for functioning in pediatric chronic pain.

PURPOSE: Accurate assessment of chronic pain and functional disability in children and adolescents is imperative for guiding pain management interventions. Parents have multifaceted roles in their child's pain experience and frequently provide parent-proxy reports of pain-related functioning. However, cross-informant variance is often observed with limited understanding of contributing factors. This study aims to examine the degree of alignment between child and parent-proxy reports for Patient-Reported Outcomes Measurement Information System (PROMIS) pain interference domain among children with chronic pain and to identify factors associated with improved child-parent agreement. METHODS: This study includes a sample of 127 youth (66.1% female) with mixed etiology chronic pain, ranging in age from 8 to 17 (M = 12.24; SD = 1.598), and their parent. Data was collected at an interdisciplinary pediatric pain clinic and online peer support groups. Measures of demographic, pain intensity, and functioning were collected. RESULTS: Means of parent-proxy reports were significantly lower than child self-reports on the PROMIS (p < 0.05). A statistically significant association between child's pain intensity (ß = 0.953, P < 0.05) and the difference between child self-reported and parent-proxy reported PROMIS functional interference scores was found. CONCLUSION: Parents underestimated pain-related functional disability relative to children's self-reports. The difference between the paired child self-report and parent-proxy report of functional disability was significantly associated with greater child self-reported pain intensity. Although parent-proxy reports in pediatric chronic pain is often used in research and practice, findings underscore the importance of incorporating child and adolescent self-report, when possible, to comprehensively capture the child's pain experience and best inform clinical interventions.

Incorporating Patient Values in Large Language Model Recommendations for Surrogate and Proxy Decisions.

BACKGROUND: Surrogates, proxies, and clinicians making shared treatment decisions for patients who have lost decision-making capacity often fail to honor patients' wishes, due to stress, time pressures, misunderstanding patient values, and projecting personal biases. Advance directives intend to align care with patient values but are limited by low completion rates and application to only a subset of medical decisions. Here, we investigate the potential of large language models (LLMs) to incorporate patient values in supporting critical care clinical decision-making for incapacitated patients in a proof-of-concept study. METHODS: We simulated text-based scenarios for 50 decisionally incapacitated patients for whom a medical condition required imminent clinical decisions regarding specific interventions. For each patient, we also simulated five unique value profiles captured using alternative formats: numeric ranking questionnaires, text-based questionnaires, and free-text narratives. We used pre-trained generative LLMs for two tasks: 1) text extraction of the treatments under consideration and 2) prompt-based question-answering to generate a recommendation in response to the scenario information, extracted treatment, and patient value profiles. Model outputs were compared with adjudications by three domain experts who independently evaluated each scenario and decision. RESULTS AND CONCLUSIONS: Automated extractions of the treatment in question were accurate for 88% (n = 44/50) of scenarios. LLM treatment recommendations received an average Likert score by the adjudicators of 3.92 of 5.00 (five being best) across all patients for being medically plausible and reasonable treatment recommendations, and 3.58 of 5.00 for reflecting the documented values of the patient. Scores were highest when patient values were captured as short, unstructured, and free-text narratives based on simulated patient profiles. This proof-of-concept study demonstrates the potential for LLMs to function as support tools for surrogates, proxies, and clinicians aiming to honor the wishes and values of decisionally incapacitated patients.

Self and proxy symptom reporting in glioma patient-caregiver dyads: the role of psychosocial function in rating accuracy.

BACKGROUND: Illness-related communication and depressive symptoms within families may play an important role in caregivers' ability to accurately understand patients' symptom burden. We examined the associations between these psychosocial factors and symptom accuracy in patients with glioma and their family caregivers. METHODS: Patients and caregivers (n = 67 dyads) completed measures of depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Patients reported on their own cancer-related symptoms (MDASI-BT) while caregivers reported on their perception of the patients' symptoms (i.e., proxy reporting). Paired t-tests and difference scores were used to test for agreement (absolute value of difference scores between patients and caregiver proxy symptom and interference severity reports) and accuracy (caregiver underestimation, overestimation, or accurate estimation of patient symptom and interference severity). RESULTS: Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for gastrointestinal symptoms and general symptoms. Among caregivers, 22% overestimated overall symptom severity and 32% overestimated overall symptom interference. In addition, 13% of caregivers underestimated overall symptom severity and 21% of caregivers underestimated overall symptom interference. Patient illness communication was associated with agreement of overall symptom severity (r=-0.27, p = 0.03) and affective symptom subscale (r=-0.34, p < 0.01). Caregivers' reporting of illness communication (r=-0.33, p < 0.01) and depressive symptoms (r = 0.46, p < 0.0001) were associated with agreement of symptom interference. Caregiver underestimating symptom severity was associated with lower patient physical QOL (p < 0.01); caregiver underestimating symptom interference was associated with lower patient physical QOL (p < 0.0001) and overestimating symptom interference was associated with lower patient physical QOL (p < 0.05). Patient and caregiver mental QOL was associated with caregiver underestimating (p < 0.05) and overestimating (p < 0.05) symptom severity. CONCLUSION: The psychosocial context of the family plays an important role in the accuracy of symptom understanding. Inaccurately understanding patients experience is related to poor QOL for both patients and caregivers, pointing to important targets for symptom management interventions that involve family caregivers.

Increasing healthcare proxy documentation in an intensive care unit: a quality improvement initiative.

In New York State, the Health Care Proxy Law allows patients to designate a person they trust to make medical decisions on their behalf should they lose the capacity to do so. In an Intensive Care Unit (ICU) setting, identification of a health care proxy (HCP) is especially important as patients are at heightened risk of losing decision-making capacity during their clinical course. While our hospital has guidelines to solicit and correctly document the patient's HCP information, it is not routinely done. Missing or incomplete HCP documentation is a prevalent issue, with lack of patient education, physical document issues, and time and workflow constraints commonly cited as barriers. We describe the implementation of a small-scale quality improvement project to increase the percentage of completed HCP documentation in our ICU through multi-faceted interventions targeting education, workflow, access, and technology.

Patient and proxy perspectives in decision-making for geriatric hip fracture management in the Netherlands: a qualitative study.

OBJECTIVE: The objective of this study was to explore the perspectives with the decision-making process between surgery and palliative, non-operative management of geriatric hip fracture patients and their proxies. DESIGN: A qualitative interview study was performed. Patients and proxies were asked to participate in semi-structured interviews. Data were analysed using reflexive thematic analysis according to Braun and Clarke's six-step guide. SETTING AND PARTICIPANTS: Hip fracture patients in the Netherlands were eligible for inclusion. For hip fracture patients with a pre-existing diagnosis of dementia and for patients who opted for palliative, non-operative management, proxies were included. RESULTS: A total of 16 interviews were conducted, consisting of 4 patient interviews and 12 proxy interviews. Five themes were identified during thematic analysis: (1) underlying patient values, (2) the provision of information, (3) reasons to consider either palliative, non-operative management or surgery, (4) involvement in decision and (5) realisation of expectations. Information provided by the physician varied in terms of desired level of detail but involved discussing the advantages and disadvantages of surgery and palliative, non-operative management. Patients and proxies underscored the importance of achieving optimal quality of life, and the disparity between expected and actual treatment outcomes was unpleasant and negatively influenced the overall experience. CONCLUSIONS: In-depth analysis provided a unique insight into the patient and proxy perspectives in shared decision-making for geriatric hip fracture management in the acute setting. Overall, there were differences between reported experiences and preferences of participants. This heterogeneity stresses the importance of keeping a person-centred approach during shared decision-making. Other key considerations during shared decision-making include physicians informing patients from professional experience and communicating sensitively about both treatment options and prognosis. Physicians should aim to provide realistic, sensitive and timely information to both patients and proxies during the choice between curation and palliation for their hip fracture.

The use of proxy measurement of internal states in people with intellectual disability: A scoping review.

BACKGROUND: The measurement of internal states of people with an intellectual disability is challenging. Given these difficulties, proxy respondents are sometimes used. However, the literature provides some caution about the validity of the use of proxy respondents. AIMS: This review aims to identify the available evidence regarding the use of proxy respondents in the measurement of internal states of people with intellectual disabilities. METHOD: The Arksey and O'Malley scoping review framework was used for this review, refined with the Joanna Briggs Institute Methodology. RESULTS: Results indicate there are some differences in the findings reported with respect to the efficacy of the use of proxy respondents. These may be due to a number of inconsistencies and weaknesses in examinations of their utility. CONCLUSIONS: If proxy-reports are to be useful in understanding the internal states of people with intellectual disability, researchers need to address the shortcomings revealed by this review.

Agreement between quality of life assessed using family proxy and child self-reports among children with hematologic malignancy.

Evidence-based literature recognizes that the different degrees of agreement between a child self-report and a proxy-report depend on the characteristics of the domains, the child's age and illness, the proxy's own perspective on QoL, and family attendance during the child's hospitalization. This study aims to determine the degree of agreement between proxy-reports and child self-reports on quality of life (QoL) for children with hematologic malignancy ranging in age from 5 to 18 years who are undergoing treatment. We retrieved clinical QoL data from a study titled "Dynamic change in QoL for Vietnamese children with hematologic malignancy" from April 2021 to December 2022. To evaluate the magnitude of agreement between self-reports and proxy-reports, intraclass correlation coefficients (ICCs) for 259 pairs of measurements were quantified. Using independent t tests, the mean differences between self-reports and proxy-reports were tested. Moderate agreement was consistent through all age groups for five subscales, including physical, psychosocial, pain, nausea, and procedural anxiety (ICCs ranged from 0.53 to 0.74). The weakest agreement appeared in two groups, subjects aged 5-7 years and 13-18 years on six domains (school, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication) (-0.01 to 0.49). Child self-rating was consistently higher than that of proxies for the physical, emotional, and nausea domains among children aged 5-7 years and for procedural anxiety, treatment anxiety, and cognitive problems among children aged 8-12 years.    Conclusion: The agreement level of self-reports and proxy-reports was differently distributed by child age and the PedsQL domains. The proxy children agreement on QoL among children with hematologic malignancy was divergent according to the different age groups, which could potentially be explained by proxy-child bonding at different stages of childhood development. Our recommendation for future studies is to explore children's age as a potential factor influencing proxy agreement on QoL among children with cancer. What is Known: • Children and their proxies may think differently about quality of life (QoL). • Comparing two sources of data (i.e., child and proxy) on aspects of QoL can help identify the discrepancies between children's perceptions of their QoL and their parents' perceptions. This can be useful in terms of identifying potential areas for improvement or concern and may also be helpful in making decisions about treatment and care. What is New: • Our study results demonstrated that proxies who comprised children aged 5-7 years or 13-18 years reported differently among domains that cannot be expressed verbally or with body language, including cognitive problems, perceived physical appearance, and communication. • Children generally perceived their QoL to be better than their proxies. Therefore, a more comprehensive understanding of children's QoL may require the consideration of multiple sources of data from various perspectives.

A Comparison of the Psychometric Properties of the EQ-5D-Y-3L and EQ-5D-Y-5L Using Paediatric Multi-Instrument Comparison (P-MIC) Study Data.

BACKGROUND: The EQ-5D-Y is a generic health-related quality of life (HRQoL) measure suitable for children and adolescents. There are two versions of the instrument, which differ in response levels: the three- (Y-3L) and five-level (Y-5L) versions. The Y-5L has been developed to improve the psychometric performance of the Y-3L. OBJECTIVE: This study aims to assess the psychometric properties of Y-5L and to compare the performance of Y-5L with Y-3L in separate self- and proxy-reported samples. METHODS: Both versions of the instrument were administered to children/adolescents (self-report) or caregivers (proxy-report) of Australian children aged 5-18 years. The data were gathered as part of the Australian Paediatric Multi-Instrument Comparison (P-MIC) study. The Y-5L and Y-3L were evaluated in terms of ceiling effects, criterion validity, inconsistency, informativity, and test-retest reliability in both proxy and self-complete populations. RESULTS: Overall, 5945 respondents completed both the Y-3L and Y-5L, with 2083 proxy and 3862 self-completed responses. Ceiling effects were lower in the Y-5L than the Y-3L. Items from the same domains show the strongest correlation for both samples. Regarding informativity, the Y-5L demonstrated more discriminatory power, indicated by having a higher Shannon diversity index in all domains of the Y-5L compared with the Y-3L. Test-retest showed fair agreement between responses at baseline and follow-up. CONCLUSION: The Y-5L has demonstrated moderate validity and fair reliability for use in measuring HRQoL in children and adolescents, both when self-reported by children or proxy reported. Overall, Y-5L is a dependable and valid extension from the Y-3L.

Reliability of proxy reports on patient reported outcomes measures in stroke: An updated systematic review.

OBJECTIVES: With the rising global burden of stroke-related morbidity, and increased focus on patient-centered healthcare, patient reported outcome measures (PROMs) are increasingly used to inform healthcare decision-making. Some stroke patients with cognitive or motor impairments are unable to respond to PROMs, so proxies may respond on their behalf; the reliability of which remains unclear. The aim of the study is to update a 2010 systematic review to investigate the inter-rater reliability of proxy respondents answering PROMs for stroke patients. MATERIALS AND METHODS: Studies on the reliability of proxy respondents in stroke were searched within CINAHL, Embase, PsycInfo, and WoS databases (01/07/22, 08/07/22). Fifteen studies were included for review. ICC and k-statistic were extracted for PROMs scales and categorized as poor (0.80). Bias was assessed using the CCAT. RESULTS: Five studies reported PROMs with inter-rater reliability scores ranging from 0.80. Two studies reported activities of daily living (ADLs) scores ranging from 0.41 to 0.80 and 8 studies reported quality of life (QoL) measures with scores ranging from 0.80. Subcategories of these scales included physical (ICC/k-statistic 0.41- >0.8), cognitive (ICC/k-statistic 0.40-0.80), communication (ICC/k-statistic <0.4-0.80,) and psychological (ICC/k-statistic <0.40-0.60) measures. CONCLUSIONS: Proxy respondents are reliable sources for PROM reports on physical domains in ADLs, PROMs and QoL scales. Proxy reports for measures of communication and psychological domains had greater variability in reliability scores, ranging from poor to substantial; hence, caution should be applied when interpreting proxy reports for these domains.

Legal aspects of proxy practices in clinical psychiatry in India.

Proxy procedures in psychiatry include proxy consultations, proxy prescriptions, covert and refill medications. Before Mental Healthcare Act (MHCA) 2017, there was minimal emphasis on the rights of individuals with Severe Mental Illness (SMI), leading family members to use proxy practices. With the new legislation, these practices have to be seen in a new light. Proxy consultations may be allowed for information, advice, etc. but not for giving medications or making a diagnosis. Proxy prescriptions can be given if the patient gives prior authorization or through nominated representative in advanced directive. Psychiatrists may consider covert medications if the patient lacks capacity, but not in emergencies. Medication refills can be given with physicians' recommendation for a specific duration.

Understanding the influence of different proxy perspectives in explaining the difference between self-rated and proxy-rated quality of life in people living with dementia: a systematic literature review and meta-analysis.

PURPOSE: Proxy assessment can be elicited via the proxy-patient perspective (i.e., asking proxies to assess the patient's quality of life (QoL) as they think the patient would respond) or proxy-proxy perspective (i.e., asking proxies to provide their own perspective on the patient's QoL). This review aimed to identify the role of the proxy perspective in explaining the differences between self-rated and proxy-rated QoL in people living with dementia. METHODS: A systematic literate review was conducted by sourcing articles from a previously published review, supplemented by an update of the review in four bibliographic databases. Peer-reviewed studies that reported both self-reported and proxy-reported mean QoL estimates using the same standardized QoL instrument, published in English, and focused on the QoL of people with dementia were included. A meta-analysis was conducted to synthesize the mean differences between self- and proxy-report across different proxy perspectives. RESULTS: The review included 96 articles from which 635 observations were extracted. Most observations extracted used the proxy-proxy perspective (79%) compared with the proxy-patient perspective (10%); with 11% of the studies not stating the perspective. The QOL-AD was the most commonly used measure, followed by the EQ-5D and DEMQOL. The standardized mean difference (SMD) between the self- and proxy-report was lower for the proxy-patient perspective (SMD: 0.250; 95% CI 0.116; 0.384) compared to the proxy-proxy perspective (SMD: 0.532; 95% CI 0.456; 0.609). CONCLUSION: Different proxy perspectives affect the ratings of QoL, whereby adopting a proxy-proxy QoL perspective has a higher inter-rater gap in comparison with the proxy-patient perspective.

Inter-rater agreement between patient- and proxy-reported cognitive functioning in intensive care unit patients: A cohort study.

BACKGROUND: Health status, including cognitive functioning before critical illness, is associated with long-term outcomes in intensive care unit survivors. Premorbid data are therefore of importance in longitudinal studies. Few patients can self-report at intensive care admission. Consequently, proxy assessments of patients' health status are used. However, it remains unclear how accurately proxies can report on an intensive care patient's cognitive status. OBJECTIVES: The aim of this study was to examine the agreement between patient- and proxy-reporting of the Cognitive Failures Questionnaire and to compare the agreement between proxy reports using the latter questionnaire and the Informant Questionnaire of Cognitive Decline in the Elderly as a reference. METHODS: The present cohort study is part of a longitudinal multicentre study collecting both patient and proxy data using questionnaires and clinical data from medical records during intensive care unit stays. Agreement on patient and proxy pairs was examined using intraclass correlation coefficient (ICC), Spearman's correlation, percentage agreement, and Gwet's AC1 statistics. Agreement between the proxy-reported questionnaires was examined using percentage agreement and Gwet's AC1 statistics. RESULTS: In total, we collected 99 pairs of patient-proxy assessments and 158 proxy-proxy assessments. The ICC for the sum scores revealed moderate agreement (n = 99; ICC = 0.59; 99% confidence interval [CI]: [0.30-0.76]) between patient and proxy. Agreement on items was poor (AC1 = 0.13; 99% CI: [0.01-0.24]) to moderate (AC1 = 0.55; 99% CI: [0.43-0.68]). Agreement using cut-off scores (>43) to indicate cognitive impairment was very good (89.9%, AC1 = 0.87; 99% CI: [0.79-0.95]). Agreement between the proxy-reported Cognitive Failures Questionnaire (>43) and the reference questionnaire (≥3.5) was also very good (n = 158; 85%, AC1 = 0.82; 99% CI: [0.74-0.90]). CONCLUSIONS: Proxy assessments of the Cognitive Failures Questionnaire (>43) may be used to indicate cognitive impairment if patients are unable to self-report. Agreement was high between the two questionnaires determined by proxies, showing that these can be used interchangeably to assess cognitive functioning if proxy reporting is needed.

Exploratory factor analysis and Rasch analysis to assess the structural validity of the Adult Social Care Outcomes Toolkit Proxy version (ASCOT-Proxy) completed by care home staff.

PURPOSE: Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy measures completed by staff on behalf of older adults resident in care homes, by comparison to the ASCOT-SCT4, the measure of social care-related quality of life (SCRQoL) from which the ASCOT-Proxy was developed. METHODS: EFA was conducted on the ASCOT-SCT4 and the two ASCOT-Proxy measures (Proxy-Proxy, Proxy-Resident), to determine if they retained the single factor of the original ASCOT-SCT4 measure found in samples of older community-dwelling adults. Rasch analysis was also applied to measures with a single factor structure in the EFA. RESULTS: ASCOT-Proxy-Resident had a single factor structure, as did the original ASCOT-SCT4 (also, found in this analysis when completed by care home staff). The ASCOT-Proxy-Proxy had a two factor structure. Rasch analysis of ASCOT-Proxy-Resident and ASCOT-SCT4 had an acceptable model fit, internal consistency and met the assumptions of unidimensionality and local independence. There was evidence of less than optimal distinguishability at some thresholds between responses, and low frequency of rating of the 'high level needs'. CONCLUSION: The ASCOT-Proxy-Resident is a valid instrument of SCRQoL for older adults resident in care homes, completed by staff proxies. Due to the two-factor structure, which differs from the original ASCOT-SCT4, we do not recommend the use of the ASCOT-Proxy-Proxy measure, although collecting data as part of the ASCOT-Proxy questionnaire may support its feasibility and acceptability. Further qualitative study of how care home staff complete and perceive the ASCOT-Proxy is encouraged for future studies.

EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU.

CONTEXT: Efforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress. OBJECTIVES: The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates. METHODS: Surrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed evaluations of EMPOWER's acceptability and measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments. RESULTS: Delivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD = .90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen's d = -0.21, small effect) immediately post-intervention and grief intensity (d = -0.70, medium-large effect), posttraumatic stress (d = -0.74, medium-large effect), experiential avoidance (d = -0.46, medium effect), and depression (d = -0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d = 0.27, small effect) was higher among surrogates randomized to EMPOWER. CONCLUSIONS: EMPOWER appeared feasible and acceptable, increased surrogates' satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.

Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions.

PURPOSE: Measuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understanding the effect of interventions such as genomic sequencing (GS). The Pediatric Quality of Life Inventory (PedsQL) is a widely used generic measure of HRQoL in pediatric patients, but its psychometric properties have not yet been evaluated in children undergoing diagnostic GS. METHODS: In this cross-sectional study, we surveyed caregivers at the time of their child's enrollment into GS research studies as part of the Clinical Sequencing Evidence Generating Research (CSER) consortium. To evaluate structural validity of the PedsQL 4.0 Generic Core Scales and PedsQL Infant Scales parent proxy-report versions, we performed a confirmatory factor analysis of the hypothesized factor structure. To evaluate convergent validity, we examined correlations between caregivers' reports of their child's health, assessed using the EQ VAS, and PedsQL scores by child age. We conducted linear regression analyses to examine whether age moderated the association between caregiver-reported child health and PedsQL scores. We assessed reliability using Cronbach's alpha. RESULTS: We analyzed data for 766 patients across all PedsQL age group versions (1-12 months through 13-18 years). Model fit failed to meet criteria for good fit, even after modification. Neither age group (categorical) nor age (continuous) significantly moderated associations between PedsQL scores and caregiver-reported child health. Cronbach's alphas indicated satisfactory internal consistency for most PedsQL scales. CONCLUSION: The PedsQL Generic Core Scales and Infant Scales may be appropriate to measure HRQoL in pediatric patients with suspected genetic conditions across a wide age range. While we found evidence of acceptable internal consistency and preliminary convergent validity in this sample, there were some potential problems with structural validity and reliability that require further attention.