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PubMed2005

Proxies and other external raters: methodological considerations.

OBJECTIVE: The purpose of this paper is to introduce researchers to the measurement and subsequent analysis considerations involved when using externally rated data. We will define and describe two categories of externally rated data, recommend methodological approaches for analyzing and interpreting data in these two categories, and explore factors affecting agreement between self-rated and externally rated reports. We conclude with a discussion of needs for future research. DATA SOURCES/STUDY SETTING: Data sources for this paper are previous published studies and reviews comparing self-rated with externally rated data. STUDY DESIGN/DATA COLLECTION/EXTRACTION METHODS: This is a psychometric conceptual paper. PRINCIPAL FINDINGS: We define two types of externally rated data: proxy data and other-rated data. Proxy data refer to those collected from someone who speaks for a patient who cannot, will not, or is unavailable to speak for him or herself, whereas we use the term other-rater data to refer to situations in which the researcher collects ratings from a person other than the patient to gain multiple perspectives on the assessed construct. These two types of data differ in the way the measurement model is defined, the definition of the gold standard against which the measurements are validated, the analysis strategies appropriately used, and how the analyses are interpreted. There are many factors affecting the discrepancies between self- and external ratings, including characteristics of the patient, the proxy, and of the rated construct. Several psychological theories can be helpful in predicting such discrepancies. CONCLUSIONS: Externally rated data have an important place in health services research, but use of such data requires careful consideration of the nature of the data and how it will be analyzed and interpreted.

Data Collection↗
PubMed2006

Brief report: identifying a proxy for health care as part of routine medical inquiry.

BACKGROUND: Physician-initiated advance care planning is desirable, effective, and routinely indicated for competent adult patients, but doctors are often reluctant to begin the necessary conversations. OBJECTIVE: To determine whether patients are willing and able to designate a surrogate for medical decision making, when asked to do so as part of routine medical inquiry. DESIGN, PATIENTS, MEASUREMENTS: A survey asking patients to name a health care agent was designed and administered in the context of routine clinical care. Participants were drawn from a consecutive sample of 309 competent adult outpatients. Data were analyzed using ordinary descriptive statistics. RESULTS: Two hundred ninety-eight of 309 patients (response rate, 96%) completed the survey and were willing and able to specify a proxy for health care. One third of married participants did not choose their spouse as proxy. CONCLUSIONS: Asking patients to identify a surrogate for medical decision making opens the door for ongoing individualized medical care planning in the context of ordinary patient-physician interaction. This approach is applicable to all competent adults. Documenting proxy choice protects a patient's wishes and preferences until more definitive planning is accomplished.

Adult↗
PubMed2006

Proxy measurements in multiple sclerosis: agreement between patients and their partners on the impact of multiple sclerosis in daily life.

BACKGROUND: The use of self-report measurements in clinical settings has increased. The underlying assumption for self-report measurements is that the patient understands the questions fully and is able to give a reliable assessment of his or her own health status. This might be problematic in patients with limitations that interfere with reliable self-assessment such as cognitive impairment or serious mood disturbances, as may be the case in multiple sclerosis. In these situations proxies may provide valuable information, provided we can be certain that proxies and patients give consistent ratings. OBJECTIVE: To examine whether patients with multiple sclerosis and their partners agree on the impact of multiple sclerosis on the daily life of the patient by using the Multiple Sclerosis Impact Scale (MSIS-29). METHODS: 59 patients with multiple sclerosis and their partners completed the MSIS-29. Agreement was examined, comprehensively at scale score levels and item functioning, using both traditional and less conventional psychometric methods (Rasch analysis). RESULTS: Agreement between patients and partners was good for the physical scale, and slightly less but still adequate for the psychological scale. Mean directional differences did not show considerable systematic bias between patients and proxies. Intraclass correlation coefficients (ICCs) satisfied the requirements for agreement, but were higher for the physical scale (0.81) than for the psychological scale (0.72). These findings were supported by Rasch analyses. CONCLUSION: In this sample, albeit small, partners provided accurate estimates of the impact of multiple sclerosis. This supports the value of self-rating scales and indicates that partners might be useful sources of information when assessing the impact of multiple sclerosis on the daily life of patients.

Adult↗
PubMed2002

False allegations of child physical abuse: a case of Münchausen by proxy-like syndrome?

The diagnosis of factitious disorder by proxy is still under investigation. Few studies have researched the psychological status and potential underlying psychopathology of the perpetrator, as well as the impact on the child's development and the pathological reactions of rearing a child within the context of a distorted reality. In this article, we present the case of a 12-year-old boy where this diagnosis was suspected. Both he and his parents brought forth false allegations of repeated physical abuse induced by his schoolteacher. The parents presented with shared psychosis and the child presented with conduct disorder, factitious disorder, and emotional problems. We suggest that this case represents a Münchausen by proxy-like syndrome involving both the legal and medical systems. Hypotheses regarding the pathogenesis of symptoms in the child are noted, underscoring the differences between Münchausen by proxy syndrome appearing in infancy with that appearing in older children.

Child↗
PubMedDate not supplied

[Munchausen syndrome by proxy].

This review deals with bibliography on Munchausen syndrome by proxy (MSbP). The name of this disorder was introduced by English psychiatrist Roy Meadow who pointed to diagnostic difficulties as well as to serious medical and legal connotations of MSbP. MSbP was classified in DSM-IV among criteria sets provided for further study as "factitious disorder by proxy", while in ICD-10, though not explicitly cited, MSbP might be classified as "factitious disorders" F68.1. MSbP is a special form of abuse where the perpetrator induces somatic or mental symptoms of illness in the victim under his/her care and then persistently presents the victims for medical examinations and care. The victim is usually a preschool child and the perpetrator is the child's mother. Motivation for such pathological behavior of perpetrator is considered to be unconscious need to assume sick role by proxy while external incentives such as economic gain are absent. Conceptualization of MSbP development is still in the domain of psychodynamic speculation, its course is chronic and the prognosis is poor considering lack of consistent, efficient and specific treatment. The authors also present the case report of thirty-three year-old mother who had been abusing her nine year-old son both emotionally and physically over the last several years forcing him to, together with her, report to the police, medical and educational institutions that he had been the victim of rape, poisoning and beating by various individuals, especially teaching and medical staff. Mother manifested psychosis and her child presented with impaired cognitive development, emotional problems and conduct disorder.

Adult↗
PubMed2000

[Munchausen's syndrome by proxy--a malignant form of child abuse].

Munchhausen syndrome by proxy is a malignant form of child abuse in which illness in a child is fabricated and/or induced by a parent. It can result in serious illness and even death of the child and it is difficult to detect. The authors give a significant amount of literature examples. They try to find out the difference in ways of hurting by perpetrators. Various types of personalities and emotional disturbances in Munchhausen on proxy syndrome are shown. Child maltreatment and Munchhausen by proxy syndrome need to be part of the differential diagnosis when the clinical picture is atypical or does not appear medically plausible.

Adult↗
PubMed2004

[Factitious disorder and factitious disorder by proxy].

Similar to the adult patient, a child or adolescent may actively feign or produce artificial symptoms (synonymous: Munchausen syndrome). The more frequent case is that the child suffers from being an object of symptom fabrication induced by a close person caring for the child, regularly the mother (Munchausen syndrome by proxy). This review focuses on psychopathological aspects of the clinically more relevant factitious disorder by proxy. Typical behaviour and personality characteristics are presented that can be taken as clinical warning signs. Doctor-mother-interaction is affectively challenging due to conflicting tasks imposed on the physician. Complementary to pediatric exclusion of genuine disease, psychopathological assessment is required to exclude other sources of deviant illness behaviour. Factious disorder shares particular features (active violation of the child, false report of history, aggravated symptom presentation and increased doctor-hopping, difficulties in conforming maternal report in biomedical data) with other psychopathological entities (child abuse, simulation, dissociative disorders, somatoform disorders including hypochondria, variants of maternal overprotection and infantilization, psychosis or delusion in the mother). Criteria for differentiation are presented. Three concepts on the psychopathological etiology of factitious disorder by proxy are relevant: In some cases, it may be conceived as secondary manifestation of a primary psychopathological entity or personality disorder. Learning theory emphasises operant rewards received from vicarious sick role. Attachment theory provides possible explanations concerning the traumatic impact on the child, early sources of psychopathology in the fabricating mother and risks for intergenerational transmission of factitious disorders.

Adolescent↗
PubMed1994

Munchausen syndrome by proxy in false allegations of child sexual abuse: legal implications.

A review of the literature regarding Munchausen syndrome by proxy in relation to allegations of child sexual abuse is presented. Problems in the diagnosis of Munchausen syndrome by proxy in these cases can be the result of a failure to consider that the allegations may be false, legal issues surrounding the child's testimony, and other biases in professional and legal attitudes towards allegations of sexual abuse. A proposal for a more stringent standard of care is made. Treatment of Munchausen syndrome by proxy is best effected by case management, with the person who made the diagnosis managing the case throughout the treatment. This person should act as liaison to relay information between all the parties involved.

Child↗
PubMed1993

Are deprivation indicators a proxy for morbidity? A comparison of the prevalence of arthritis, depression, dyspepsia, obesity and respiratory symptoms with unemployment rates and Jarman scores.

The aim of the study was to examine the relationship between specific areas of morbidity measured using validated survey questions and deprivation indicators to see if the latter could act as a proxy in health needs assessment, health service planning and resource allocation in a typical health authority. A postal questionnaire was used to provide information about arthritis, depression, dyspepsia, obesity and respiratory symptoms in a simple random sample from the study population. The questions were from survey instruments that have been widely used to derive information about these conditions. The relationships between the prevalence of these specific areas of morbidity and both unemployment and the Jarman Underprivileged Areas Score were explored. Spearman's rank correlation coefficients were calculated and compared for each combination of measures. The study population was a random sample of the residents of each of the 22 electoral wards in Rotherham Health Authority. Responses were obtained from 82 per cent of the 5000 sampled. Although all morbidity measures showed positive correlations with both Jarman score and unemployment, some, notably those relating to respiratory disease and depression, were much more strongly correlated than others, such as obesity. There was no difference between unemployment and Jarman score in respect of the magnitude of the correlation coefficients. In conclusion, for some, but not all, conditions socio-economic measures are a good proxy for morbidity. Unemployment is just as useful a proxy as the Jarman score.

Arthritis↗
PubMed1999

[Patient's advance directives and appointment of a health-care proxy in elderly psychiatric patients].

In clinical practice and in research projects the presence of an advance directive or an appointment of a health-care proxy may substantially contribute to decisions of diagnostic and therapeutic interventions, if a person has lost his ability to consent. A special questionnaire was given to a non representative sample of 206 elderly inpatients suffering from different psychiatric disorders. The majority of these patients (57%) supported the necessity of such instruments. In a further 5.4% of the interviewees written documents, either advance directive or determination of a health-care proxy, were already present. However, 25% of the interviewed patients did not approve of the usefulness of these instruments and 12.5% answered that they were not able to give any decision. Among the interviewed patients, age, gender and the psychiatric disorder present were not associated with approval or refusal. However, higher education was related to the approval of advance directives. This study demonstrates that in a relatively large sample of elderly patients with psychiatric disorders approval of an advance directive and a determination of a health-care proxy is present in a substantial majority. The results suggest that there is urgent need for more intensive information of elderly people about these documents. This could contribute to a decision process about medical interventions in incapacitated persons which is in accordance with their former will.

Advance Directives↗
PubMed2005

Use of mineral magnetic concentration data as a particle size proxy: a case study using marine, estuarine and fluvial sediments in the Carmarthen Bay area, South Wales, U.K.

Compositional (non-magnetic) data can correlate strongly with particle size, which deems it appropriate as a particle size proxy and, therefore, a reliable means of normalising analytical data for particle size effects. Previous studies suggest magnetic concentration parameters represent an alternative means of normalising for these effects and, given the speed, low-cost and sensitivity of the measurements may, therefore, offer some advantages over other compositional signals. In this work, contemporary sediments from a range of depositional environments have been analysed with regard to their mineral magnetic concentration and textural characteristics, to observe if the strength and nature of the relationship identified in previous studies is universal. Our data shows magnetic parameters (chi(LF), chi(ARM) and SIRM) possess contrasting relationships with standard textural parameters for sediment samples collected from marine (Carmarthen Bay), estuarine (Gwendraeth Estuary) and fluvial (Rivers Gwendraeth Fach and Gwendraeth Fawr) settings. Magnetic concentrations of sediments from both the marine and estuarine environments are highly influenced by the magnetic contribution of finer particle sizes; Gwendraeth Fawr River sediments are influenced by the magnetic contribution of coarser particle sizes, while sediments from the Gwendraeth Fach River are not influenced significantly by any variations in textural properties. These results indicate mineral magnetic measurements have considerable potential as a particle size proxy for particular sedimentary environments, which in certain instances could be useful for geochemical, sediment transport, and sediment provenance studies. However, the data also highlight the importance of fully determining the nature of the relationship between sediment particle size and magnetic properties before applying mineral magnetic data as a particle size proxy.

Aluminum Silicates↗
PubMed2003

Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures.

PURPOSE: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. METHODS: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test-retest reliability 10-14 days apart, and documented construct validity. RESULTS: A sample of 381 children with epilepsy, age 6-15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's alpha was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test-retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate. CONCLUSIONS: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a complement to the child self-report measure in evaluating the validity of parental assessment of the child's health status; in longitudinal outcome research; and in HRQL assessment of children who are unable to respond independently.

Adolescent↗
PubMed1997

Antisocial personality by proxy: the Norton-Sims syndrome.

An antisocial personality disorder by proxy is defined by a proposed set of diagnostic criteria and a general description of proxy and perpetrator characteristics. Subtypes, dynamics, and features of this proposed disorder are described, and five-factor personality model (Costa & Widiger, 1994) loadings for the proxy and perpetrator are hypothesized. The relationship to abuse trauma and the five-factor personality model are discussed along with implications and suggestions for future research.

Adult↗
PubMed2005

Role of depressive and cognitive status in self-reported evaluation of quality of life in older people: comparing proxy and physician perspectives.

OBJECTIVE: To assess the quality of life (QOL) of older adults aged over 65 years, who were healthy or suffering from depressive syndrome (DS) and/or Alzheimer's disease (AD); to analyse agreement between participants' and proxies' QOL ratings; to evaluate the association between participants' depressive and cognitive symptoms and QOL rating; to correlate participants' health ratings and the severity of physician assessment. METHODS: 138 non-institutionalised older people of both genders and their respective caregiver and treating doctor were consecutively recruited (response rate 74.6%). Forty suffered from AD, 36 from DS, 35 from both conditions and 27 had neither. All participants were evaluated by Mini Mental State Examination, Geriatric Depression Scale and World Health Organization Quality of Life (WHOQOL) questionnaire. The caregiver filled out QOL-Proxy and the physician filled out the 'Health and Severity of Illness' form. RESULTS: The four groups scored significantly differently in all areas of WHOQOL-100 (WHOQOL questionnaire with 100 items). Participants with DS perceived their QOL as poorer than did healthy and AD subjects. Participants with AD and DS obtained intermediate scores. Severity of depression correlated with worsening QOL. Subjects with DS--but not those with AD, AD and DS, and, in some areas, healthy participants--had similar perception of their QOL to their proxies. Poor physical health ratings by the physician corresponded to poorly perceived QOL by the patient. CONCLUSION: Older people with AD perceive their own QOL similarly to and, in some areas, even better than healthy people of the same age. The opposite was observed among the depressed. Informants do not always evaluate QOL in the same way as healthy elders and those with AD, while there is more agreement with depressed patients. Informant evaluation may be helpful but is not necessarily reliable.

Aged↗
PubMed2005

Use of proxy respondents and accuracy of minimum data set assessments of activities of daily living.

BACKGROUND: Although the Minimum Data Set (MDS) presents a wide range of opportunities for policy makers and practitioners interested in outcomes of nursing home care for frail elderly persons, researchers have debated the validity and reliability of measurements in the MDS from the outset. To investigate this issue, the authors studied the accuracy of functional assessments by comparing the MDS and interview data collected in two evaluation studies. METHODS: Activities of daily living (ADL) assessment data from 3385 nursing home residents were collected from interviews with nursing home residents (n = 1200), family members (n = 1070), and nursing home staff (n = 1115). The MDS data for these nursing home residents were obtained and matched with the interview data. The agreement in ADL assessments between interview data and the MDS was assessed using Kappa statistics and multinomial logit regression for each of the three data sources. RESULTS: The agreement on ADL assessments between MDS and interview data was low to moderate (Kappa = 0.25 to 0.52), regardless of the sources of data. Interview data from staff and family proxies agreed to a greater degree with the MDS than did data collected from nursing home residents. The MDS reported fewer ADL difficulties than did staff proxies and more ADL difficulties than did nursing home residents. These findings held even after adjustment for other confounding factors using multinomial logit regression. CONCLUSIONS: The substantial discrepancy between MDS and interview data can be attributed to both bias and error. The ADL assessments based on residents' and family or staff reports differ, but the size of these differences depends on the proxy type and the method of data collection.

Activities of Daily Living↗
PubMed1992

Reliability and validity of self and proxy reporting of morbidity data: a case study from Beirut, Lebanon.

We compared the self-reported illnesses (heart disease, back pain, rheumatoid arthritis, hypertension, and pulmonary disease) and smoking histories of 100 cases and 100 controls matched for age and sex with reports of this information from proxy informants from the same household in two areas in the city of Beirut. In addition, both cases and controls were given physical examinations to evaluate the accuracy of the responses. The level of agreement between the responses of subjects and of their informants varied from one condition to the other. Heart disease had the highest level of agreement, with the proportion of agreement greater than 93% for the cases and the controls and having chi values of 0.79 and 1.0, respectively. The report of back pain exhibited the lowest level of agreement, with responses showing a proportion of agreement of 74% for the cases and 90% for the controls, with chi values of 0.49 and 0.50, respectively. In comparing the responses of subjects and proxy informants with the results of physical examinations, heart disease had the highest level of agreement (J index ranged from 0.69 to 0.84), and back pain had the lowest level of agreement (J index ranged 0.42 to 0.48). These results show that proxy informants are good respondents for members of the same household and that health interview surveys are accurate for data collection of well defined chronic conditions.

Adult↗
PubMed1997

Wherein lies the truth? Assessment of agreement between parent proxy and child respondents.

BACKGROUND: The epidemiological study of diseases of childhood presents a special situation in that the principal respondent is almost always a person other than the index. Use of proxy respondents in paediatric epidemiology has been little studied compared with the use of surrogate respondents for adults. METHODS: Agreement between responses from children and their parents to identical questions about the children was assessed in a case-control study of childhood melanoma in Queensland, Australia. Weighted kappa and log-linear modelling techniques were used to measure agreement for ordinal data. RESULTS: Highest agreement was found for reports of unchanging physical characteristics such as eye colour (kappa = 0.88), hair colour (kappa = 0.76), and for history of residing on a farm (kappa = 0.84). Moderate agreement was seen for density of facial freckling (kappa = 0.62), propensity to sunburn (kappa = 0.46) and tanning ability (kappa = 0.47). Variables with low levels of agreement between parent proxy and child respondents included density of freckling on the shoulders (kappa = 0.28) and degree of moliness of the skin at age 5 years (kappa = 0.24). Agreement did not vary according to age or sex of the children. Log-linear modelling was performed to determine the type and magnitude of components of agreement. CONCLUSIONS: Agreement between responses from children and parent proxies depends largely upon the type of information sought, rather than characteristics of the respondents.

Adolescent↗
PubMed1994

Attrition and use of proxy respondents and auxiliary information in the Sicilian Neuroepidemiologic Study.

Two-phase prevalence surveys with screening (phase 1) and examination (phase 2) are useful for some chronic diseases. Attrition, which may bias estimates, occurs in either phase because some eligible subjects die before contact, some refuse to cooperate, some are incapacitated, and some are unreachable. This investigation relates to a survey of neurologic diseases conducted in three municipalities of Sicily (prevalence date, November 1, 1987) and considers the attrition experienced and the use of proxy respondents in phase 1 and auxiliary information in phase 2 to offset, in part, this attrition. Regarding case finding, the salvage effort was more productive for decreased and incapacitated subjects. The age, sex, and household size of the subject were related to phase 1 attrition, but only age was related for all four attrition groups--deceased, refusing, incapacitated, and unreachable subjects. On the basis of information from proxy respondents, the educational levels of refusing and unreachable subjects were compared with those of subjects screened directly. Refusing subjects were less educated, and unreachable subjects were more educated. The proxy respondent performance, as indicated by "don't know" responses, was better with screening items concerning facial paralysis and mouth drooping (and not limb sensory abnormalities or impaired consciousness), better with younger subjects, and worse with refusing or incapacitated subjects.

Adolescent↗