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Background A unique and limiting component in the research on functional impairment among children has been the exclusive use of parent proxy reports about child functioning; and there is limited information regarding the impact of pediatric cancer treatment on children’s day-to-day functioning and how this is related to neurocognitive functioning. The objective of the current study was to examine a novel measure of self-reported functional impairment, and explore the relationship between self-reported and parent-reported child functional impairment in pediatric cancer survivors compared to controls. Methods A cross-sectional cohort of survivors ( n  = 26) and controls ( n  = 53) were recruited. Survivors were off treatment an average of 6.35 years ( SD  = 5.38; range 1–15 years) and demonstrated an average “medium” Central Nervous System treatment intensity score. Participants completed measures of functional impairment (FI), intellectual assessment (RIST) and executive functions (NIH Examiner), while parents reported on children’s functional impairment. Results Survivors were similar to controls in functional impairment. Regardless of group membership, self-reported FI was higher than parent-reported FI, although they were correlated and parent report of FI significantly predicted self-reported FI. Across groups, increased impairment was associated with four of seven Examiner scores. Conclusions Research regarding self-reported functional impairment of cancer survivors and its association with parent-reported functional impairment and neurocognitive deficits has been limited. Our results suggest that self-reported FI appears to be a reasonable and viable outcome measure that corresponds with and adds incremental validity to parent reported FI. While low treatment intensity may confer relative sparing of functional impairment among survivors, children report higher FI levels than parents, suggesting that FI can be of clinical utility. In conclusion, pediatric cancer survivors should be screened for self-reported functional difficulties.

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 (β = 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.

Purpose There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self- and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings. Methods As part of a randomised controlled trial, four quality-of-life measures (DEMQOL, EQ-5D-5L, QOL-AD and QUALID) were completed by people living with dementia, their friends or relatives or care staff proxies. Data were collected from 726 people living with dementia living in 50 care homes within England. Analyses were conducted to establish the internal consistency of each measure, and inter-rater reliability and correlation between the measures. Results Residents rated their quality of life higher than both relatives and staff on the EQ-5D-5L. The magnitude of correlations varied greatly, with the strongest correlations between EQ-5D-5L relative proxy and staff proxy. Internal consistency varied greatly between measures, although they seemed to be stable across types of participants. There was poor-to-fair inter-rater reliability on all measures between the different raters. Discussion There are large differences in how QoL is rated by people living with dementia, their relatives and care staff. These inconsistencies need to be considered when selecting measures and reporters within dementia research.

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.

Objective The objective of the present study is to describe the item response theory (IRT) analysis of the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS®) pediatric parent proxy-report item banks and the measurement properties of the new PROMIS® Parent Proxy Report Scales for ages 8–17 years. Methods Parent proxy-report items were written to parallel the pediatric self-report items. Test forms containing the items were completed by 1,548 parent—child pairs. CCFA and IRT analyses of scale dimensionality and item local dependence, and IRT analyses of differential item functioning were conducted. Results Parent proxy-report item banks were developed and IRT parameters are provided. The recommended unidimensional short forms for the PROMIS® Parent Proxy Report Scales are item sets that are subsets of the pediatric self-report short forms, setting aside items for which parent responses exhibit local dependence. Parent proxy-report demonstrated moderate to low agreement with pediatric self-report. Conclusions The study provides initial calibrations of the PROMIS® parent proxy-report item banks and the creation of the PROMIS® Parent Proxy-Report Scales. It is anticipated that these new scales will have application for pediatric populations in which pediatric self-report is not feasible.

Objective The objective of the present study is to describe the extension of the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS®) pediatric parent proxy-report item banks for parents of children ages 5–7 years, and to investigate differential item functioning (DIF) between the data obtained from parents of 5–7-year-old children with the data obtained from parents of 8–17 year-old children in the original construction of the scales. Methods Item response theory (IRT) analyses of DIF were conducted comparing data from the 5–7 age group with data from the established scales for ages 8–17 across 5 generic health domains (physical functioning, pain, fatigue, emotional health, and social health) and asthma. Results IRT DIF analyses revealed that the majority of the items functioned similarly with responses from parents of younger and older children. A small number of items were removed from the item bank for younger children, and a few items that exhibited statistical DIF were retained in the pools with the caveat that they should not be used in studies that involve comparisons of younger children with older children. Conclusions The study confirms that most of the items in the PROMIS parent proxy-report item banks can be used with parents of children ages 5–7. It is anticipated that these new scales will have application for younger pediatric populations when pediatric self-report is not feasible.

PurposeTo qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report.MethodsWe enrolled child and parent dyads, who understood English and where children (4–18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting.ResultsWe enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion.ConclusionWe identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.

Background Proxy 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. Methods Four 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. Results The 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. Conclusion When 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. Plain English summary Assessment of patient-reported outcomes (e.g., symptoms, functional status, and other quality of life domains) by a proxy on behalf of the patient is helpful when patient self-report is not possible or when a complementary perspective may inform care. Determining how well older adult patients and their caregivers agree on the patient’s pain, depression, anxiety, and functioning is important in investigating and managing these core clinical domains. In this study, patient-caregiver agreement was evaluated for four commonly-used scales that assess depression (PHQ-9), anxiety (GAD-7), pain (PEG), and multi-dimensional symptom and functional impairment (SymTrak). Total score and item-level scores were similar between patients and caregivers when averaged at the group level. Agreement was higher for more physically oriented domains (pain and SymTrak) than psychological conditions (depression and anxiety). Higher (worse) patient-reported scale scores were associated with caregiver underreporting, whereas higher caregiver task difficulty was associated with overreporting. Proxy report may be sufficiently accurate in research when studying group differences. However, proxy reports should be interpreted more cautiously in individual patients with psychological symptoms or higher symptom severity, or where there is caregiver diffficulty.

Purpose Investigations of the quality of life (QoL) of young people have shown that psychological and behavioral problems are associated with lower subjective well-being. The QoL ratings of children and adolescents based on self-reports and proxy reports are significantly different. The aim of the present study was to examine youth self-reported and parent proxy-reported QoL and investigate the effects of age, gender and psychological/behavioral symptoms on the QoL reports of youth. We hypothesized that self-reported emotional and anxiety problems influence self-reported QoL, while proxy-reported behavioral problems influence proxy reports of QoL. Methods The sample consisted of 284 parent–child pairs. Youths were between the ages of 11 and 18 years, the mean age was 14.3 (SD 2.1) years, and 35.6% were males. The Inventory of Life Quality (ILK) scale was used to measure QoL, and the Strengths and Difficulties Questionnaire was used to assess psychological and behavioral problems. Results Males had higher self-reported QoL than females, and younger children had better QoL than older children. Emotional peer problems and hyperactivity reported by youth and hyperactivity and conduct problems reported by parents predicted youth self-rated ILK. Only parent-reported psychological/behavioral problems predicted proxy-rated ILK. Conclusion The evaluation of QoL of children and adolescents should involve both self and proxy reports in order to capture the effects of various psychological/behavioral symptoms and the perspectives of both youth and parents.

Background Health-related quality of life (HRQoL) is clearly recognized as a patient-important outcome in patients with traumatic brain injury (TBI). Patient-reported outcomes are therefore often used and supposed to be directly reported by the patients without interpretation of their responses by a physician or anyone else. However, patients with TBI are often unable to self-report because of physical and/or cognitive impairments. Thus, proxy-reported measures, e.g., family members, are often used on the patient’s behalf. Yet, many studies have reported that proxy and patient ratings differ and are noncomparable. However, most studies usually do not account for other potential confounding factors that may be associated with HRQoL. In addition, patients and proxies can interpret some items of the patient-reported outcomes differently. As a result, item responses may not only reflect patients’ HRQoL but also the respondent’s (patient or proxy) own perception of the items. This phenomenon, called differential item functioning (DIF), can lead to substantial differences between patient-reported and proxy-reported measures and compromise their comparability, leading to highly biased HRQoL estimates. Using data from the prospective multicenter continuous hyperosmolar therapy in traumatic brain-injured patients study (240 patients with HRQoL measured with the Short Form-36 (SF-36)), we assessed the comparability of patients’ and proxies’ reports by evaluating the extent to which items perception differs (i.e., DIF) between patients and proxies after controlling for potential confounders. Methods Items at risk of DIF adjusting for confounders were examined on the items of the role physical and role emotional domains of the SF-36. Results Differential item functioning was evidenced in three out of the four items of the role physical domain measuring role limitations due to physical health problems and in one out of the three items of the role emotional domain measuring role limitations due to personal or emotional problems. Overall, despite an expected similar level of role limitations between patients who were able to respond and those for whom proxies responded, proxies tend to give more pessimistic responses than patients in the case of major role limitations and more optimistic responses than patients in the case of minor limitations. Conclusions Patients with moderate-to-severe TBI and proxies seem to have different perceptions of the items measuring role limitations due to physical or emotional problems, questioning the comparability of patient and proxy data. Therefore, aggregating proxy and patient responses may bias HRQoL estimates and alter medical decision-making based on these patient-important outcomes.