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PubMed1996

Identifying ancestry: The reliability of ancestral identification in the United States by self, proxy, interviewer, and funeral director.

We examined consistency in the classification of ancestry by self, proxy, interviewer, and funeral director (on a death certificate) in a sample of the U.S. population--the First National Health and Nutrition Examination Survey and Epidemiologic Follow-up. Among study subjects for whom comparable ethnic identity options were available at both interviews, 58% of subjects specified the same identity at two times. Persons who specified four different ethnic backgrounds were 3.4 times as likely to change their identity over time as persons specifying only one background. Self-classification of ancestry at initial interview was consistent with proxy reports at follow-up for 55% of subjects for whom proxy information was available. Comparison of the self-classification of ancestry with the classification of race by interviewers and by funeral directors indicates high consistency for Whites and Blacks and low consistency for American Indians. The "measurement" of ancestry (that is, race or ethnicity) is critical to the understanding and elimination of differences in health status among racial/ethnic populations, but the low reliability of these measures over time and across observers complicates the analysis and interpretation of health statistics by ancestry, particularly for populations other than White or Black.

Adult↗
PubMedDate not supplied

Telephone and in-person proxy agreement between stroke patients and caregivers for the functional independence measure.

This study examined patient/proxy agreement for telephone administration of the Functional Independence Measure (FIM) to a sample of 25 community-living stroke patients 18 mo post-stroke and their caregivers. Patients had all received in-patient rehabilitation for stroke. Because use of the FIM is increasing for follow-up purposes, it is important to document whether it is appropriate to administer a telephone version to proxy caregivers in situations in which patients cannot answer for themselves. Proxy agreement results were then compared with those obtained for in-person administration of the FIM to the same sample 1 yr earlier. Overall, proxy agreement for telephone administration was excellent for total scores (intraclass correlation was 0.91) and the physical dimension (0.94) and lower for the cognitive dimension (0.52), closely paralleling results obtained for the earlier in-person administration. Reasons for lower agreement on the cognitive dimension are discussed.

Activities of Daily Living↗
PubMed2000

Mobility problems and perceptions of disability by self-respondents and proxy respondents.

BACKGROUND: The Americans With Disabilities Act defines disability on the basis of physical or mental impairments or external perceptions of impairment. OBJECTIVES: The objective of this study was to examine perceptions of disability among people with lower-extremity mobility difficulties. RESEARCH DESIGN: This study used a cross-sectional, nationally representative survey, the 1994 to 1995 National Health Interview Survey-Disability (NHIS-D) supplement. Using SAS-callable SUDAAN for all analyses, we produced national population estimates. SUBJECTS: This study included 142,572 noninstitutionalized, civilian residents of the United States who were > or =18 years of age, with 80,423 self-respondents and 49,883 proxy respondents. MEASURES: We created a 4-level mobility variable using NHIS-D questions about the ability to walk, climb stairs, stand and the use of mobility aids. We examined associations between mobility and answers to 2 questions about self- and external perceptions of disability. RESULTS: The results showed that 3.1% (estimated 5.82 million persons) reported major mobility difficulties, including 3.7% of self-respondents and 2.7% of those with proxy respondents. Among persons with major mobility problems, 70.8% perceived themselves as disabled, whereas 64.8% thought other people see them as disabled. Also, 80.5% of manual wheelchair users saw themselves as disabled. Proxies were somewhat more likely to perceive disability than self-respondents, although differences were not generally statistically significant. In multivariable regressions, mobility level was the strongest predictor of self-perceived disability, followed by general health status. CONCLUSIONS: Mobility problems increase the likelihood that people will see themselves as disabled, but these perceptions are not universal. Although the schematic of wheelchair users has become an international symbol of disability, many people with serious mobility problems do not view themselves as disabled.

Adult↗
PubMed2004

Responses by pregnant Jehovah's Witnesses on health care proxies.

OBJECTIVE: To review the treatment options presented on the New York State Health Care Proxy for Jehovah's Witnesses, which is signed by pregnant women when they present for care. METHODS: Chart reviews were performed for all women who presented to labor and delivery at our institution from 1997 to 2002 and identified themselves as Jehovah's Witnesses. A patient was included in the study if a completed health care proxy was available in her chart. Data were derived from the health care proxy and from the Mount Sinai School of Medicine's Blood Product Checklist for Jehovah's Witness Patients. Variables of interest included age, race, parity, and antenatal and perinatal complications. RESULTS: A total of 61 patients were identified. Of these, 39.3% agreed to accept a variety of donated blood products, 9.8% would accept donated packed red blood cells, and 50.1% would accept neither from a homologous donor. With respect to nonstored autologous blood, 55% of respondents would accept either intraoperative normovolemic hemodilution or transfusion of their own blood obtained by a cell salvage system. No significant differences in responses were noted for any of the above-mentioned variables. CONCLUSION: This review refutes the commonly held belief that all Jehovah's Witnesses refuse to accept blood or any of its products. In this population of pregnant women, the majority were willing to accept some form of blood or blood products. This information can be used to help health care providers counsel a patient when she is initially faced with considering these issues and may help to remove the stigma of accepting one of the options.

Adult↗
PubMed2026

Genetically proxied circulating PD-1/PD-L1 levels and broadly defined myocarditis: A bidirectional Mendelian randomization study with exploratory lipidomic analyses.

Myocarditis is an inflammatory myocardial disease with potentially severe outcomes. Programmed cell death protein 1 (PD-1) and programmed death-ligand 1 (PD-L1) regulate immune tolerance, but the association between lifelong genetically proxied circulating PD-1/PD-L1 levels and broadly defined myocarditis remains uncertain. We investigated these associations and explored related plasma lipid species. We conducted bidirectional 2-sample Mendelian randomization using proteomic genome-wide association data from the UK Biobank Pharma Proteomics Project and INTERVAL. FinnGen Release 10 was the primary broadly defined myocarditis outcome, and an independent myocarditis genome-wide association study (GCST90018882) provided outcome-level validation. Complementary estimators, heterogeneity and pleiotropy diagnostics, influence analyses, MR-RAPS, and supportive meta-analyses were performed. Associations with 179 plasma lipid species were examined in exploratory analyses. Higher genetically proxied circulating PD-L1 was inversely associated with broadly defined myocarditis in UKB-PPP (odds ratio [OR] 0.834, 95% confidence interval [CI] 0.698-0.995; P = .0441), and the independent INTERVAL analysis yielded a concordant inverse estimate (OR 0.619, 95% CI: 0.434-0.883; P = .0083); no clear association was observed for PD-1. The MR-RAPS estimate retained the inverse direction; estimates against the independent broadly defined myocarditis dataset were also inverse, and supportive meta-analyses across protein and outcome sources yielded inverse pooled estimates. Reverse MR did not support effects of broadly defined myocarditis liability on circulating PD-1 or PD-L1. Exploratory lipid analyses identified nominal associations requiring confirmation. Higher genetically proxied circulating PD-L1 may be associated with a lower risk of broadly defined myocarditis, supporting further investigation of PD-L1-related immune regulation. These findings do not directly estimate the effects of pharmacologic PD-1/PD-L1 blockade. The lipid findings are hypothesis-generating.

Myocarditis↗
PubMed1988

The family systems of Munchausen syndrome by proxy.

Munchausen Syndrome by Proxy describes a parent who fabricates the appearance of physical illness in a child. Previous descriptions of the syndrome have focused exclusively upon medical or psychiatric assessments of the involved child and perpetrating parent. The family evaluations of two cases presented here suggest that Munchausen Syndrome by Proxy may be a systemic syndrome generated when a mother already possessing a somatoform or factitious disorder joins an enmeshed, authoritarian family system possessing a systemic history of exploitation of children. We suggest that measures instituted to protect the abused child must take into account the systemic function of the Munchausen by Proxy behavior in maintaining family stability, lest such measures be rendered ineffective by family members. When there is ongoing victimization of perpetrating parents in a similar pattern of dominance/submission within their own family of origin, disruption of these intergenerational patterns of exploitation may be a necessary component of treatment.

Adult↗
PubMed2002

Interrelations between three proxies of health care need at the small area level: an urban/rural comparison.

STUDY OBJECTIVE: To examine the relations between geographical variations in mortality, morbidity, and deprivation at the small area level in the south west of England and to assess whether these relations vary between urban and rural areas. DESIGN: A geographically based cross sectional study using 1991 census data on premature limiting long term illness (LLTI) and socioeconomic characteristics, and 1991-1996 data on all cause premature mortality. The interrelations between the three widely used proxies of health care need are examined using correlation coefficients and scatterplots. The distribution of standardised LLTI residuals from a regression analysis on mortality are mapped and compared with the distribution of urban and rural areas. Multilevel Poisson modelling investigates whether customised deprivation profiles improve upon a generic deprivation index in explaining the spatial variation in morbidity and mortality after controlling for age and sex. These relations are examined separately for urban, fringe, and rural areas. SETTING: Nine counties in the south west of England. PARTICIPANTS: Those aged between 0-64 who reported having a LLTI in the 1991 census, and those who died during 1991-1996 aged 0-74. MAIN RESULTS: Relations between both health outcomes and generic deprivation indices are stronger in urban than rural areas. The replacement of generic with customised indices is an improvement in all area types, especially for LLTI in rural areas. The relation between mortality and morbidity is stronger in urban than rural areas, with levels of LLTI appearing to be greater in rural areas than would be predicted from mortality rates. Despite the weak direct relations between mortality and morbidity, there are strong relations between the customised deprivation indices computed to predict these outcomes in all area types. CONCLUSIONS: The improvement of the customised deprivation indices over the generic indices, and the similarity between the mortality and morbidity customised indices within area types highlights the importance of modelling urban and rural areas separately. Stronger relations between mortality and morbidity have been revealed at the local authority level in previous research providing empirical evidence that the inadequacy of mortality as a proxy for morbidity becomes more marked at lower levels of aggregation, especially in rural areas. Higher levels of LLTI than expected in rural areas may reflect different perceptions or differing patterns of illness. The stronger relations between the three proxies in urban than rural areas suggests that the choice of indicator will have less impact in urban than rural areas and strengthens the argument to develop better measures of health care need in rural areas.

Adolescent↗
PubMed2006

Brief report on the experience of using proxy consent for incapacitated adults.

The Medicines for Human Use (Clinical Trials) Regulations 2004, which came into force in the UK in May 2004, cover the conduct of clinical trials on medicinal products. They allow a legal representative (a person not connected with the conduct of the trial) to consent to the participation of incompetent adults in medical research. Currently, very little is known about how such representatives will make their decisions. We have experience with proxy consent for older adults in a large, national trial. From 2445 potentially eligible but incapacitated patients, proxy, relative assent resulted in trial participation of only 87 (3.6%) patients. The reasons for this were that a large number of incapacitated patients had no relative available for assent (2286), but also a high proportion of relatives approached refused to provide assent (72/159, 45.3%). In comparison, 17.7% of patients declined participation in the trial.Proxy consent allowed only a small increase in trial recruitment of incapacitated patients. The fact that a greater proportion of relatives than patients refused to provide assent implies that they were more cautious than the patients themselves, or perhaps used different criteria, when making their decision. In future research involving incapacitated older patients there is likely to be heavy reliance on proxy consent provision by legal representatives. Our findings imply that consent decisions of legal representatives will not necessarily reflect those of patients themselves.

Aged↗
PubMed1978

On children and proxy consent.

The meaning of valid proxy consent for children has recently been the subject of an important debate between Richard McCormick and Paul Ramsey on the ethics of experimenting with children. Ramsey is willing to agree with McCormick that parental consent for a child to undergo some medical procedure is valid only if parents consider what the child would consent to if he could. But beyond this, Ramsey has a fundamentally different conception of the child from McCormick, and therefore gives a very different interpretation to this standard for valid proxy consent. In Ramsey's view, McCormick's basic mistake is to think of the child as a small adult, thereby overlooking the child's peculiar vulnerabilities and needs. In particular, McCormick fails to attend to the child's needs for "preservation in life and healthful growth". In this paper, the author pursues Ramsey's suggestion that a correct analysis of valid proxy consent for children would replace the "language of consent" with the "language of need". He does this by sketching a theory of parenthood that rests on two central notions: that of primary goods, as found in the writing of John Rawls, and that of autonomy.

Child↗
PubMed2006

Assessment of exposure to mercury from industrial emissions: comparing "distance as a proxy" and dispersion modelling approaches.

BACKGROUND: The Runcorn area, north-west England, contains many pollution sources, the health effects of which have been under discussion for over 100 years. Preliminary investigations revealed an excess risk of mortality from kidney disease in people living nearest to several point sources of pollution, using distance as a proxy for exposure. Ongoing epidemiological investigations into the effect of ambient mercury exposure on dose and renal effect required a more refined assessment of exposure. METHODS: Atmospheric dispersion modelling was used to assess mercury dispersion from three mercury-emitting sources (including a large chlor alkali plant), based on knowledge of emissions, local meteorology and topography. RESULTS: The model was sensitive to various input parameters, with different dispersion patterns and ground-level concentrations, and therefore different exposed populations identified when different input parameters were defined. The different approaches to exposure assessment also had an impact on the epidemiological findings. The model output correlated well with weekly monitoring data collected in the local area, although the model underestimated concentrations in close proximity to the chlor alkali plant. The model identified that one point source did not contribute significantly to ground-level mercury concentrations, so that inclusion of this source when using the "distance as a proxy" approach led to significant exposure misclassification. CONCLUSIONS: The model output indicates that assessment of ambient exposure should give consideration to the magnitude of emissions, point source characteristics, local meteorology and topography to ensure that the most appropriate exposure classification is reached. Even if dispersion modelling cannot be undertaken, these data can be used to inform and improve the distance as a proxy approach, and improve the interpretability of the epidemiological findings.

Air Pollution↗
PubMed1995

Predictors of patient and proxy satisfaction with discharge plans.

If patients are not readily available, family members or others sometimes are used as substitute informants when evaluating consumer satisfaction. Little is known, however, about the extent to which responses of patients and proxies are interchangeable. In this study, patients (N = 225) or significant others (N = 115) provided an overall rating of discharge plans, as well as information on psychosocial, health, and post-hospital service related factors, at 3-4 weeks post-discharge. While no difference was found between mean plan ratings for the two groups, substantial differences were found in factors predicting satisfaction for patients and for proxies. Results indicate that care should be taken in using proxy ratings in the place of patient ratings, particularly when developing strategies for enhancing consumer satisfaction. Findings are discussed as they relate to continuity of care initiatives and programs for enhancement of desirable health utilization behaviors, in the context of managed care.

Aftercare↗
PubMed1994

Estimates of population smoking prevalence: self-vs proxy reports of smoking status.

OBJECTIVES: In the face of rising costs of surveillance systems, it is time to reexamine the feasibility of including proxy respondents in surveys designed to provide population estimates of smoking prevalence. METHODS: Data are from the California. Tobacco Surveys, which are random-digit dialed telephone surveys. One adult provided demographic information and smoking status for all household residents. Additionally, some adults were selected for in-depth interviews that also included smoking status questions. We matched information from proxy respondents and self-respondents and evaluated smoking status discrepancies between them relative to demographic and other factors (n = 2930 matched pairs) in 1992. We address the potential bias these discrepancies might introduce into the population estimate of smoking prevalence. RESULTS: Overall, the discrepancy between proxy report and self-report was 4.3%, and it increased particularly when the self-respondent reported nondaily smoking or recent quitting. Discrepancies acted in both directions, and the net bias was that the screener survey overestimated smoking prevalence by 0.1% in 1992 (0.3% in 1990). CONCLUSIONS: Smoking status questions can be added to ongoing surveys such as the census or labor force surveys; one adult could provide smoking status for all household members.

Adult↗
PubMed1989

Health care decisions among elderly long-term care residents and their potential proxies.

Seventy residents of the residential care section of a long-term care facility were asked to make health decisions after being presented four clinical vignettes. Two vignettes involved high-risk procedures (aortic valve replacement and carotid endarterectomy) and two were low risk (flu vaccination and psychotropic medication). Comparisons were made between decisions made by the elderly participants and predictions of those decisions by potential proxies, including the participant's closest relative and a nurse, a social worker, and a physician in the facility. There was a low rate of agreement between decisions made by the elderly participant and the decisions the potential proxies thought they would make. The highest agreement was found between the participants' actual decision and the decision predicted by their relatives. The lowest agreement occurred between what the physician thought the participant would choose for the two high-risk vignettes and what the participant actually chose. The quality of the elderly participant's decisions was also rated on a four-point scale by the potential proxy, as well as by a researcher. Highest ratings of the quality of the elderly person's decision-making ability were assigned by the relative. A significant negative correlation was obtained between the elderly person's age and the decision-making rating assigned by the physician, and significant positive correlations were obtained between mental status and decision-making ratings by the other raters. These data have important implications for designing and implementing strategies to maximize the ability of elderly people in long-term care settings to participate in decisions about their health care.

Aged↗
PubMed1996

Munchausen syndrome by proxy complicating ear surgery.

Munchausen syndrome by proxy (MSBP) is a form of child abuse in which a parent or caretaker produces or simulates illness in a child. Often great lengths are undertaken to diagnose and treat the myriad of symptoms and problems in these children. Unnecessary examinations, treatments, and hospitalizations ensure. Unfortunately, some victims of this syndrome die. Munchausen syndrome by proxy is a form of child abuse and should be reported appropriately. The diagnosis of MSBP is difficult to make and must be done with caution as the implications for those involved are serious. Therefore, care must be taken in properly identifying cases. We present a case of MSBP complicating the postoperative course of a boy after undergoing ear surgery for cholesteatoma. Characteristics and potential clues to the diagnosis of MSBP are discussed. The goal of our article is to inform otolaryngologists of this syndrome so they may develop a high index of suspicion to better detect its occurrence.

Child, Preschool↗
PubMed1996

Munchausen syndrome by proxy. Child abuse in the medical system.

Munchausen syndrome by proxy often is managed differently from other forms of child maltreatment, although it is differentiated from them only by the active engagement with the medical profession in the production of morbidity. We suggest a more rigorous approach to Munchausen syndrome by proxy, with explicit acknowledgement that it is abuse and that the medical system is critical to its genesis. This leads us to question the broadness with which the label is applied (eg, in cases of imposed upper airway obstruction) and to argue for management strategies closer to those accepted for other forms of child maltreatment.

Child↗
PubMed2004

Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting.

OBJECTIVE: To examine the strength of the association between different measures of health-related quality of life (HRQOL), disability, pain, and well-being in children with chronic arthritis. To evaluate whether HRQOL scores vary as a function of disability status beyond chance. To assess the quality of the parent proxy report for HRQOL as compared with disability, pain, and well-being. METHODS: Measures of HRQOL (visual analog scale [VAS] of health, Pediatric Quality of Life Inventory [PedsQL], Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and modified standard gamble technique [SG]), disability (Childhood Health Assessment Questionnaire), VAS of pain, and VAS of well-being (VAS-well) were completed by the parents (n = 119) and patients > or =8 years (SG: > or =12 years). RESULTS: HRQOL was highest when measured by the SG, whose utilities were no more than weakly correlated with any of the other outcomes. The values of all other HRQOL measures were at least moderately correlated with each other and with the VAS-well. Irrespective of the measure used, disability was associated with significantly decreased HRQOL. There was fair to good agreement and moderate consistency of the HRQOL ratings (SG: fair consistency) between patients and parents with marked differences between health domains. CONCLUSION: HRQOL measured by the PedsQL, JAQQ, and VAS are moderately to highly correlated with each other in children with chronic arthritis. The children's HRQOL significantly decreases with increasing disability. Despite more pronounced differences for some health domains, parents are moderate to good proxy reporters of HRQOL, disability, and well-being of children with chronic arthritis.

Adolescent↗
PubMed2002

The role of proxies in treatment decisions: evaluating functional capacity to consent to end-of-life treatments within a family context.

Psychology as a profession has entered the arena of palliative and hospice care later in the process than other health care professions. Through the use of Familial Advance Planning Evaluations (FAPEs), however, psychologists can assist individuals and families in facing end-of-life transitions in important ways. Hospice and palliative care philosophy treats the patient and family as the unit of care. End-of-life decision-making is therefore a family matter as well as a normative developmental transition. Yet, little is known about the decision-making process. This paper reviews the literature regarding informed consent, advance care planning, and proxy decision-making and outlines a theoretical model for familial decision-making. Previous models of end-of-life capacity evaluations and family assessments are presented and serve as the basis for a comprehensive assessment of familial decision-making at the end of life. Functional capacity evaluations of individuals at the end of life regarding decisions about life-sustaining medical treatments enable both the individual patient and one identified proxy from his or her family to discuss important issues families may face during medical crises at the end of life. The information gleaned from such evaluations has the potential to assist psychologists and other professionals in designing family-specific interventions to reduce caregiving distress, improve quality of life for dying patients, and ease the transition to bereavement for caregivers.

Decision Making↗
PubMed1995

Radiological features in a case of Münchausen syndrome by proxy.

Munchausen syndrome by proxy is a type of child abuse which is usually diagnosed on clinical grounds. In occasional instances, radiological diagnosis plays a role in the recognition of this disorder. We present the radiological findings in a child with an unusual osteomyelitis owing to Münchausen syndrome by proxy.

Child, Preschool↗