Proxy Reports Research Articles

Predicting data quality of proxy reports in egocentric network studies

Egocentric network studies and many general population surveys rely on proxy reports about network contacts of study participants that are asked in name interpreter questions. A central concern is the extent to which proxy reports match the answers these contacts would give themselves if they would be directly interviewed. Based on the theory of survey satisficing, the present research proposes a theoretical framework that allows predicting when proxy reports are likely to match self-reports. Congruence is higher if respondents possess the motivation and ability to answer a proxy question effortfully, and if the task is not too difficult. Moreover, the theory of survey satisficing states that motivation, abilities, and task difficulty are not independent of each other, which provides an explanation for inconsistent findings in the literature. Results from two egocentric network studies study among German adults (N = 756) and among Dutch middle school students (N = 679), in which network contacts were also interviewed, are in line with these hypotheses. Design recommendations for egocentric network studies are provided.

Impact of a novel family-centered values clarification tool on adolescent sperm banking attempts at the time of a new cancer diagnosis.

Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts. A prospective pilot study was conducted among families of males (12-25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts. Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents' report of perceived threat (rpb=.45, p=.01) and benefits (rpb=.57, p=.01). Only mothers' proxy reports of adolescent perceived threat (rpb=.42, p=.01) and benefits (rpb=.47, p=.003) were associated with banking attempts, while fathers' self-reported perceived benefits (rpb=.43, p=.03), self-reported barriers (rpb=.49, p=.01), and proxy reports of adolescent perceived threat (rpb=.38, p=.04) and benefits (rpb=.59, p=.02) were associated with banking attempts. Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.

Cross cultural adaptation and psychometric properties of the Bengali version of the Scale of Oral Health Outcomes for 5-year-old children (SOHO-5)

BackgroundThe oral health related quality of life (OHRQoL) of children in Bangladesh has not yet been measured, as there is no validated OHRQoL measure for that population. The aim of this study was to cross-culturally adapt the child self-report and parental proxy report versions of the Scale of Oral Health Outcomes for 5-year-old children (SOHO-5) into Bengali and test their psychometric properties: face validity, construct validity (convergent and discriminant validity) and reliability (internal consistency and test–retest reliability), among 5–9-year-old children and their parents in Bangladesh and assess associations between dental caries/sepsis and OHRQoL in this population.MethodsThe forward–backward translated Bengali SOHO-5 was piloted among 272 children and their parents to test its face validity. The questionnaire was administered to 788 children and their parents to evaluate its psychometric properties. Internal consistency of Bengali SOHO-5 was assessed using Cronbach’s alpha, and test–retest reliability was assessed using Kappa. Convergent and discriminant validity were assessed through nonparametric tests. The calculation of effect sizes and standard error of measurement facilitated the assessment of minimally important difference (MID) for SOHO-5. The associations of reporting an oral impact with caries and sepsis were assessed via logistic regression models.ResultsBoth child self-report and parental proxy report questionnaires showed good face validity. Cronbach’s alpha scores were 0.79 and 0.87 for child and parental questionnaire, respectively. A weighted Kappa score of 0.85 demonstrated test–retest reliability of child questionnaire. SOHO-5 scores were significantly associated with subjective oral health outcomes and discriminated clearly between different caries severity and sepsis groups. These differences were considerably higher than the MID. After adjusting for child’s age, sex, setting, maternal education and family income, the odds of reporting an oral impact were 2.25 (95% CI 1.98–2.56) and 4.44 (95% CI 3.14–6.28) times higher for each additional tooth with caries and sepsis, respectively.ConclusionThis study provided strong evidence supporting the validity and reliability of both versions of Bengali SOHO-5 as OHRQoL measures. Dental caries and sepsis were associated with poor OHRQoL in this population. The Bengali SOHO-5 is expected to be a useful outcome measure for research and clinical purposes in Bengali speaking child populations.

Volume-assured pressure support mode for noninvasive ventilation: can it improve overnight adherence in children with neuromuscular disease?

PurposeVolume-assured pressure support in noninvasive ventilation (VAPS-NIV) is a newer mode providing automatic pressure support adjustment to ensure a constant alveolar ventilation. Previous studies have shown that NIV effectiveness depends on patient adherence and tolerance. The aim of this study was to determine the adherence and efficacy of VAPS-NIV compared to spontaneous-time (S/T) mode in pediatric patients with neuromuscular disease (NMD).MethodsThis was a prospective observational study. Children with NMD who utilized NIV at home for ≥ 3 months were recruited from the Long-term ventilation clinic at The Hospital for Sick Children, Toronto, Canada, from July 1, 2015, to July 1, 2019. Baseline characteristics, date of initiation of NIV, and pulmonary function tests were recorded. Polysomnogram (PSG) data and adherence were recorded and analyzed comparing VAPS and S/T modes.ResultsTwenty children with NMD (17 male, 85%) were enrolled. The mean (SD) age at initiation of NIV was 11.6 ± 4.6 years. The median (IQR) duration of ventilation was 1.36 (0.80–2.98) years. The mean average daily usage and the median daily usage for VAPS mode and S/T mode were 8.4 ± 1.6 versus 7.2 ± 2.5 h (p = 0.012) and 8.6 ± 1.4 versus 7.8 ± 2.1 h (p = 0.022), respectively. There was no difference in sleep architecture, gas exchange, or parent proxy report of NIV tolerance between S/T and VAPS modes.ConclusionVAPS was associated with an improvement in adherence to therapy in children with NMD compared to S/T mode. Longitudinal studies are required to evaluate long-term clinical outcomes using VAPS mode in children with NMD.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11325-021-02288-1.

Paediatric relapsed acute leukaemia: curative intent chemotherapy improves quality of life

ObjectivesPaediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative...

Feasibility and Concurrent Validity of Cerebral Palsy Quality of Life for Children (CP QOL-Child) in Thai Version

Background: The Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaires are condition-specific QOL measures for children with CP focusing on perspectives of children with CP on their quality of life, not on their physical difficulties. The perspectives of well-being are core concepts of quality of life. The CP QOL-Child has already been translated in Thai and the reliability is excellent. The validity after the translation has not been conducted and is required. therefore, it is needed to examine the validity to ensure the clinical practicality. Objective: To examine feasibility and concurrent validity of the CP QOL-Child (Thai version). Materials and Methods: Eighty-five primary caregivers of 4- to 12-year-old children and 65 children between 9- and 12-years-old, who passed the inclusion criteria, completed three questionnaires including the CP QOL-Child (Thai version), the PedsQL 4.0 Generic Core Scales, and the PedsQL 3.0 CP module (Thai version). Results: For feasibility of the CP QOL-Child, no missing items were found in any items for the child self-report. For parent proxy report, missing items were scattered and from 1.2% to 7.1%. For concurrent validity, according to the total scores of both versions, the self-report and the parent proxy, the correlation coefficients between CP QOL-Child and PedsQL 4.0 Generic Core Scales were 0.23 to 0.25 meaning no or little correlations, at significance level of 0.05. The correlation coefficients between the CP QOL-Child and the PedsQL CP module were 0.38 to 0.49, meaning fair correlations, at significance level of 0.01. Conclusion: The feasibility of the CP QOL-Child (Thai version) was reportedly acceptable. The concurrent validity support that the CP QOL-Child may not measure the quality of life at the same constructs as the PedsQL. The CP QOL-Child asks the client’s perspectives of quality of life (QOL) while both PedsQL modules ask the client’s difficulties that might relate to QOL. Keywords: Health-related quality of life, CP QOL-Child, Cerebral palsy, Feasibility, Validity

Evaluation of caregiver burden and coping strategies in parents of paediatric familial Mediterranean fever patients in relation to illness severity, therapy and health-related quality of life.

The study aimed to determine the caregiver burden and coping strategies in caregivers of familial Mediterranean fever (FMF) patients in relation to illness severity, therapy and health-related quality of life (HRQoL). The study included 171 paediatric FMF patients and their caregivers (parents). The caregivers were asked to complete a socio-demographic form, the Zarit caregiver burden interview (ZCBI) and the Brief COPE. The patients and their caregivers were asked to complete the KINDer Lebensqualitätsfragebogen questionnaire (self-report and proxy report, respectively) for assessing HRQoL. The patients were categorised according to their disease activity (mild, moderate or severe) and the presence or absence of anti-IL-1 therapy. The mean ZCBI score of the caregivers was 44.7 ± 13.5. ZCBI and COPE scores did not differ significantly between the caregivers of FMF patients receiving and not receiving anti-IL-1 therapy. However, dysfunctional COPE (p = 0.039) and ZCBI (p = 0.021) scores showed a significant difference between the caregivers in relation to patient's disease severity. ZCBI scores were positively correlated with dysfunctional coping (p = 0.01). Self-reported HRQoL disease module scores were lower for the patients who received anti-IL-1 therapy than for those did not (p = 0.009). Proxy-reported (p < 0.001) and self-reported (p = 0.043) HRQoL disease module scores were lower for the patients with severe disease activity. As the caregiver burden increases, parents tend to use a dysfunctional coping strategy. Good control of disease activity with administration of medical therapy can reduce the disease severity, thereby decrease the caregiver burden, and secondly help to reduce the usage of dysfunctional coping in caregivers.

The effectiveness of finger puppet play in reducing fear of surgery in children undergoing elective surgery: A randomised controlled trial

<h2>ABSTRACT</h2><h3>Background</h3> The use of therapeutic interventions in the preoperative period reduces the fear in children by strengthening the relationship between the child, parent and the nurse. <h3>Aims</h3> This study aimed to investigate the effect of finger puppet play with parental involvement on fear of surgery in children undergoing elective minor surgery. <h3>Methods</h3> A prospective, randomised controlled study was conducted in a state hospital in Turkey with 70 children aged between 5-10 years. In addition to the routine care, children in the intervention group received an intervention that included finger puppet play with their parents while the control group received routine care. The data were collected via demographic form and Children's Fear Scale. <h3>Findings</h3> The preoperative fear scores of the children did not show a statistical difference between the group (p > 0.05). The results showed that children in the finger puppet group reported significantly lower fear scores than those in the control group while entering the surgery room (p < 0.001), and in the postoperative period (p < 0.001). The proxy report of the parents and nurses were also lower for the children in the finger puppet group (p < 0.05). <h3>Discussion</h3> The results provide empirical data on the effectiveness of finger puppet play in children's preoperative care, entering the surgery room, and postoperative fear. <h3>Conclusion</h3> In line with these results, it is recommended that finger puppet play is used by nurses and parents for reducing fear of surgery in children at paediatric clinics.

An exploratory study of self-reported complicated grief symptoms in parentally bereaved adults with intellectual disability.

Complicated grief involves the experience of grief-related symptoms at a time, and severity, beyond which could be considered adaptive, while persistent complex bereavement disorder (PCBD) has been identified as a condition that requires further study in the typical population. The aims of this study are to (1) explore the symptoms of complicated grief associated with parental bereavement as self-reported by adults with intellectual disabilities (IDs) who have experienced a parental bereavement and (2) conduct an initial examination of how the existing criteria for PCBD apply to this group. This study uses a comparative group design, assessing self and staff (proxy) reports for a group of parentally bereaved individuals and a matched group of non-bereaved individuals using the Complicated Grief Questionnaire - ID Self-Report. Participants were 46 individuals with ID, 30 (65%) of whom who had experienced a parental bereavement within the previous 2years. The age range was 23-67years (mean=43.8; SD=10.3). The results highlight the presence of a range of symptoms of complicated grief in individuals' self-reports, although there was some evidence that separation distress-related symptoms were more apparent. An analysis of individual symptoms showed patterns of higher reports among the bereaved group as would be expected. Comparing staff and self-reports, key criteria showed higher levels in self-reports among the bereaved group. This study has demonstrated the capacity of people with ID to self-report personal experience of symptoms of complicated grief, when appropriate and accessible assessment tools are used. Some symptoms were more evident among bereaved individuals (compared with non-bereaved participants), and they tended to be from separation distress criteria. This may indicate the relevance of these symptoms for people with ID and question the existing criteria for PCBD in this population, which may have clinical implications for supporting people with ID experiencing a more complicated bereavement response.

Prader-Willi Syndrome in children: Quality of life and caregiver burden.

To evaluate quality of life and caregiver burden in children with Prader-Willi syndrome. All children with Prader-Willi syndrome, attending a tertiary referral centre, were invited to participate (n=44). Quality of life was evaluated using the PedsQL questionnaire. Family impact modules and parent proxy reports evaluated the impact on the quality of life of the child and family. Additional challenges were captured using a burden questionnaire. Nineteen children participated. Median age was 7.9years (0.6-18.1years). Majority were female (n=14, 74%). Median age at diagnosis was 2.5weeks (range birth-2years 8months). Growth hormone treatment was in place for the majority (n=14, 74%). Increased weight and age were identified as significantly impacting on family functioning and relationships. Parents perceived increased weight and age to have a significant negative impact on their child's psychosocial health and social functioning. Caregivers of children >12years reported an increased burden of care. Disruption to routines, restriction of social activities and psychological difficulties were reported as increasing caregiver burden. Prader-Willi syndrome impacts significantly on quality of life for both the affected child and the family.

Quality of Life and Glycemic Control in Saudi Children with Type 1 Diabetes at Different Developmental Age Groups.

Background:Children with type 1 diabetes (T1D) at different stages of development have age-specific needs, which can influence their perception of quality of life (QoL). In our study, we aimed to emphasize these age-specific needs and assess the perception of QoL in Saudi children with T1D, as well as their parents correlating QoL scores with children’s glycemic control.Methods:This is a cross-sectional study in which children with T1D and their parents from 2 tertiary institutes in Saudi Arabia have answered a standard diabetes-specific QoL questionnaire (PedsQL™ 3.0 diabetes module, translated in Arabic). We also reported glycated hemoglobin (HbA1c) results for these children within a month of completing the questionnaire. The QoL total aggregate and domain scores for self (children) and proxy (parents’) reports were compared and correlated with children’s HbA1c.Results:A sample was 288 self and proxy reports from 144 children with T1D of 3 age groups: 5 to 7 years (7%), 8 to 12 years (49%), and 13 to 18 years (44%), and their parents. QoL differed significantly between self and proxy reports in the total aggregate and domain scores (P-values range from .02 to <.001). The impact on QoL was significantly higher in female patients (P = .043). Insulin pump users had better HbA1c (P = .007), and HbA1c level was worse in those who intended to fast at Ramadan (P = .005).Conclusion:Children with T1D at different developmental age groups perceive QoL differently than their parents. Adjusting management as per age-specific challenges could potentially improve these children’s QoL and glycemic control.

Respondent Biases in Household Surveys

Respondent biases introduce measurement error into household statistics. There are two components of respondent bias in household surveys: asymmetric information between proxy respondent and the individual on whom they report and aggregation bias when a proxy respondent reports on a household-level outcome across multiple individuals. We estimate the effects of respondent biases in a randomized control trial in Burkina Faso. Survey treatments vary who reports for the household including a self-report, the household head and a randomly chosen adult proxy. We find no effects of respondent type on total landholdings reported for the household, but statistically significant effects of area cultivated by random proxy reports relative to self-reported land data (11% of the standard deviation). Household heads over-report production of cereals, but under-report labor relative to self-reported labor. Female respondents report lower levels of fertilizer and higher frequencies of crops including legumes and vegetables that women traditionally produce relative to male respondents. Across all production variables, respondent biases are not solely attributable to asymmetric information. Aggregation bias is an important component of proxy misreporting for household production variables which can be addressed through survey design choices. These causal estimates of respondent biases underscore the importance of proxy reporting protocols in surveys and improved reporting of proxy descriptive statistics in empirical work.

Concordance between Libyan Child and Parent Self-Reports of Oral-Health-Related Quality of Life

Background: Measuring oral health-related quality of life (OHRQoL) is a person-centered approach to investigating oral health. Proxy reports by parents or caregivers were used for assessing children's health-related quality of life (HRQoL) for decades. Using appropriate questionnaire techniques, it has become possible to get valid and reliable information from children about 8 years of age. Aims: The aim of the study was to investigate the OHRQoL of 8–10-year-old Libyan schoolchildren from viewpoints of both the children and their parents, in order to evaluate the concordance between child and parent ratings. Materials and Methods: This is a cross-sectional study using a representative sample of 303 8–10-year-old Libyan schoolchildren. Data were collected using Arabic versions of the Child Perception Questionnaire for 8–10-year-old children (CPQ8–10) and the Parent-caregiver Perception Questionnaire (P-CPQ8). Participants were examined for both traumatic dental injuries (TDI) and dental caries. Questions about the mother's and father's educational levels and current occupations were also asked, along with information on the child's age and sex. The collected data were analyzed using SPSS for Windows, version 25.0 (SPSS Inc., Chicago, USA). The alpha value was 0.05. Results: The mean CPQ8–10 score was 3.5 ± 4.2 (range: 0–18) overall, and those who had had caries experience or a TDI had higher CPQ8–10 scores, on average. The mean P-CPQ8 score was 7.5 ± 5.4 (range 0–27), and there were no apparent differences by parental education or employment status. The association between child and parental ratings of the children's OHRQoL was weak. The parents overestimated OHRQoL relative to their children's self-assessments. Conclusions: There is relatively low agreement between Libyan children and parents in their responses to OHRQoL scales, particularly in cases where that impact is greater. Where possible, if the aim is to obtain a more complete picture of the impact of a child's oral state on his/her life, both child and parental reports should be used.

Assessment of Health-related Quality of Life in Saudi Children with Cancer.

Advances in pediatric cancer treatment and dramatic improvement in long-term survival have made health-related quality of life (HRQOL) a priority. This study describes the HRQOL of Saudi children on cancer treatment, given the paucity of data on the subject. Parents of children undergoing cancer treatment between the ages of 2 and 12 years enrolled to answer the Arabic version of the parent proxy report PedsQL™ 3.0 cancer module. The module items were reverse-scored to a linear scale from 0 to 100, in which higher scores indicated a better HRQOL. Of the 95 study participants, 61 (64.2%) were hematological malignancies and 34 (35.8%) solid malignancies. The mean score of our sample’s total HRQOL was 72.3, which is in line with the results of similar studies worldwide. The lowest scores were observed for procedural anxiety (60.14), perceived physical appearance (67.37), and treatment anxiety (67.58), while the highest were for communication (80.21), nausea (78.32), and cognitive problems (78.32). Significant associations were reported between the patients aged younger than 5 years and procedural anxiety, those aged 5 years or older and perceived physical appearance, and frequent hospital visits and worry. Healthcare professionals should consider the poor HRQOL sub-scales and their associated risks to improve treatment outcomes.

Leveraging Parent Pain Perspectives to Improve Pain Practices for Children with Medical Complexity

PurposeChildren with medical complexity (MC) must rely on others to notice and address pain. Parents are aware of child pain behaviors and can serve as reliable proxy reporters. Thus, there is a critical need to understand parent perspectives to improve pain practices. DesignIndividual interviews were used as a data collection method in this qualitative study. MethodsParticipants were recruited via mail and social media postings. Interviews were audio-recorded and transcribed verbatim. Transcribed documents were imported to NVIVO for qualitative analysis. Conventional and directed approaches to qualitative content analysis were used. ResultsFrom the data analysis, major themes included: pain experiences, confidence in caregivers, parents are partners, proactive communication, and a spontaneous theme, “they can hear us.” Emotional pain and challenges identifying the source pain were identified as sub-themes of pain experiences. ConclusionsParents in this study shared methods helpful to identifying pain in their children, as well as suggestions for discussing pain with caregivers. Priorities for future research include identifying methods for sharing pain information that are thorough, but do not burden parents or providers. Researchers should also determine how parents and caregivers can partner to identify and address pain in children with MC. Going forward, conversations about pain should be a key part of any admission assessment or first encounter. As pain episodes among children with MC can be complex and may not always be re-created in front of a provider, nurses may advise parents to take photos or videos to share with caregivers.

Health-related quality of life based on KIDSCREEN-52 in stuttering children and adolescents

Objective: Stuttering is a communication disorder that can affect an individual’s life in many ways. This study aimed to evaluate the effects of stuttering on children and adolescents’ health-related quality of life (HRQoL). Methods: This is a cross-sectional type of case-control study. Thirty-six children and adolescents diagnosed with stuttering according to DSM-5 and 37 age- and gender-matched healthy children and adolescents were included in the study. The child and adolescent’s HRQoL in both groups was evaluated using the KIDSCREEN-52 self and proxy reports. Results: No significant difference was observed in the physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, parental relationships and home life, financial resources, social support and peers, school environment, social acceptance-bullying dimensions in the KIDSCREEN-52 questionnaire between-group comparison of both report and proxy results. The parental score reports were found to be statistically significantly lower than the children with stuttering in social acceptance-bullying dimension. In contrast, the children’s scores in the dimensions of physical well-being, self-perception, parental relationships and home life, social support and peers and school environment were found to be statistically significantly lower than their parents. Conclusion: According to the study results, it was observed that the HRQoL of children between the ages of 8-18 who stutter was not different from healthy children. Since factors affecting the HRQoL of children may be affected by developmental processes, the necessity of longitudinal assessment of the HRQoL of stuttering children should be considered.

Measurement Opportunities and Challenges With Long-Term Care Residents With Dementia

Measuring clinical outcomes among older adults with moderate to severe dementia present practical and psychometric challenges. Proxy report surveys, direct observations, chart abstraction, and objective measures, such as actigraphy are frequently used with this population. The purpose of this paper is to describe issues related to measurement in the FBFC trial. Challenges to actigraphy included the resistance of residents and removal of devices, inability to detect limited movement and/or the type of activity performed. The combined use of the three measures to optimize understanding of physical activity will be addressed. Behavioral outcome measures included the Cornell Scale for Depression in Dementia, the Cohen Mansfield Agitation Inventory, and the Resistiveness to Care Scale. Despite the use of these multiple measures, limited behaviors were identified due to timing of assessments and items included within the measures. Optimal ways in which to capture behavioral symptoms will be reviewed.

Effects of Virtual Reality on Pain During Venous Port Access in Pediatric Oncology Patients: A Randomized Controlled Study.

Needle procedures are one of the most distressing practices for pediatric oncology patients. Virtual reality (VR) is a distraction method which offers an extremely realistic and interactive virtual environment and helps reduce needle-related pain and distress. The aim of this study was to evaluate the effects of VR method on pain during venous port access in pediatric oncology patients aged 7 to 18 years. Children who had cancer and were between the ages of 7 and 18 years and undergoing a port-a-cath access were randomly assigned through blocked randomization to either the VR intervention group or control group. A commercially available VR headset was fitted to children in the intervention group. Immediately after the port access, pain scores were obtained from children's self-reports and parents' proxy reports, using the Wong-Baker FACES Pain Rating Scale. Descriptive characteristics of the children (n = 71) showed a homogeneous distribution between groups. During the procedure, children in the control group (n = 36; 5.03 ± 3.35) experienced more pain than the children in VR group (n = 35; 2.34 ± 2.76; p < .001). Proxy reports of the parents in the experimental group (1.77 ± 2.46) were found to be lower than those in the control group (4.67 ± 2.56; p < .001). VR method is effective for reducing pain during venous port access in pediatric oncology patients. VR should be used as a distraction method during venous port access.

Differences in Proxy-Reported and Self-Reported Disability in the Demographic and Health Surveys

Abstract This article examines the presence, direction, and magnitude of differences between proxy reports and self-reports of disability among adults aged fifteen to fifty-nine years and elderly individuals aged sixty years and older in Demographic and Health Surveys conducted in Uganda, South Africa, and Mali. We use the propensity score weighted multivariate logistic regression to balance the weighted distributions of the covariates between self-reports and proxy reports. Disabilities that have an immediate effect on the communication with others or that require one-to-one help are likely to be over-reported by proxies or under-reported if proxies are not used, especially among the elderly aged sixty years and older. Disabilities that are not observable might be under-reported by proxies.

Accuracy of Smoking Status Reporting: Proxy Information in a Rapidly Fatal Cancer Setting.

ObjectiveTo assess whether patients and relatives can serve as reliable proxy reporters of other family members’ cigarette-smoking history.Patients and MethodsTwo samples (325 patients, 707 relatives) were identified from the Mayo Clinic Biospecimen Resource for Pancreas Research, enrolled from November, 6, 2000, to March 15, 2018. Smoking-history data, including categorical (ever/never) and quantitative (packs per day and years smoked) smoking measures, were obtained from self-completed questionnaires by patients and relatives. Relative reports were compared with patient reports on self; patient reports were compared with relative reports on self.ResultsOverall, spouses and first-degree relatives (FDRs) were accurate (94.5%) when reporting patient ever smoking; spouse reports were 98.6% sensitive and 97.7% accurate. Accuracy of patient reports was 97.8% for spouse smoking and 85.5% for FDR smoking; accuracy varied by relationship of FDR. When not concordant, patients generally over-reported daily packs smoked by relatives and under-reported years smoked. Within a 25% agreement range, spouse reports about patients’ daily packs smoked was 46.7%, and years smoked was 69.6%, whereas FDRs were 50% and 64.6%, respectively. When not concordant, relatives generally over-reported daily packs smoked by patients, but no consistent pattern was observed of over- or under-reporting years smoked by patients.ConclusionsPatients and relatives can be reliable proxies for smoking history (ever/never) in their family members, especially spouses. An accurate reporting of smoking status will help physicians to better gauge performance status and family smoking exposures to inform disease management.