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At least 19 recordsLinked to original sources
PubMed2005

Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives.

Proxy assessment of health-related quality of life (HRQL) may be sought to substitute for, or to complement, patient self-assessment. The viewpoint from which the proxy is asked to assess the patient is a subtle yet important aspect of proxy assessment. Proxy assessments can be elicited by asking a proxy to assess the patient as they think the patient would respond (ie, proxy-patient perspective) or for the proxy to provide their own perspective on the patient's HRQL (ie, proxy-proxy perspective). In this article, we introduce a framework for differentiating between and understanding HRQL assessments according to rater viewpoint. The difference between patient self-assessment and the proxy-patient perspective is defined as the inter-rater gap, whereas the difference between the proxy-patient and proxy-proxy perspective is described as the intra-proxy gap. The inter-rater gap represents the difference between patient self-assessed HRQL and the proxy ability to comprehend the patient view. The extent to which the proxy-proxy perspective is informative will depend upon the proxy's ability to provide reinforcing or complementary information, ie, represented by the intra-proxy gap, on the HRQL of the patient. We refer to the framework to emphasize the importance of delineating between proxy perspectives in study design and HRQL measurement and to guide inquiries into the validity and interpretation of the meaningfulness of the proxy HRQL assessments from each viewpoint. Future research and use of proxy raters of HRQL in clinical trials, population health monitoring, resource allocation, and clinical management can be informed by explicit consideration of the suggested framework.

Attitude to Health↗
PubMed2004

Proxy ratings of patient quality of life--factors related to patient-proxy agreement.

It is generally agreed that patients are the best raters of their quality of life (QL). Where it is not possible to obtain information from the patient the use of proxies can be an alternative. The proxy can be a significant other or a healthcare provider. The use of a proxy offers a solution to non-response. The accuracy of proxy reports is most typically determined by examining the extent to which patient and proxy ratings agree. A literature overview shows that agreement depends on several factors. Methodological limitations may have an impact on agreement. Agreement also varies according to the QL domains under study; the highest agreement is usually found for concrete domains. In addition, patient and proxy characteristics are related to agreement. When designing QL studies the threat of selection bias due to exclusion of patients has to be balanced against the threat of information bias due to proxy ratings.

Bias↗
PubMed2006

The capacity to appoint a proxy and the possibility of concurrent proxy directives.

With the projected increase in the number of persons with dementia (who eventually lose their capacity to give informed consent to treatment and research), third-party decision-making will become even more common than it is today. We argue that, because there are situations in which an appointed proxy is preferred over a de facto surrogate, it is ethically important to understand the capacity of persons with dementia to delegate their decision-making authority regarding treatment and research decisions. In this paper, focusing mainly on the research consent context, we examine the idea that persons suffering from neurodegenerative disorders may retain significant abilities-including sufficient capacity for delegating one's authority for giving consent to research-even if they are not capable of giving independent consent themselves. We first propose a rationale for assessing the capacity to appoint a proxy and then describe a novel interview instrument for assessing the capacity to appoint a proxy for research consent.

Advance Directives↗
PubMed1998

Factitious illness by proxy presenting as anorexia and polydipsia by proxy.

Factitious illness by proxy is a highly pathological form of parent-child relationship. To our knowledge no former case of polydipsia by proxy has been published. The case of a 2-y-old boy suffering from malnutrition due to displacement of maternal anorexia and polydipsia is presented. Child psychiatric evaluation found cognitive delay and psycho-social impairment in the child, as well as a severe mother-child relationship disturbance. Psychological assessment showed a personality disorder with depressive and paranoid features in the mother. The father was described as a schizoid personality. The possible mechanisms of displacement are hypothesized.

Anorexia↗
PubMed2001

'Battered pets': Munchausen syndrome by proxy (factitious illness by proxy).

Nine cases of suspected Munchausen syndrome by proxy (MSBP), involving pets as proxies, were identified among 448 cases of non-accidental injury to small animals. These cases, recorded by a random sample of small animal practitioners in the UK, demonstrated several combinations of features, including attention-seeking behaviour by the owner, real and apparently factitious clinical signs, deliberate injury, markedly abnormal biochemical profiles, serial incidents, interference with surgical sites, recovery after separation from the owner, and 'veterinarian-shopping' by the owner. All of these features are consistent with those identified in the well documented MSBP in which children are the victims. Furthermore, one of the cases involved serial attempts at poisoning other animals and a child.

Animals↗
PubMed1999

Outcome of psychiatric intervention in factitious illness by proxy (Munchausen's syndrome by proxy).

OBJECTIVE: To determine the outcome for children after psychiatric intervention in cases of factitious illness by proxy. METHODS: All 17 children from 16 families, selected for admission to the Park Hospital Oxford family unit 1992-96 were followed up after a mean of 27 months. Information was obtained on the children and their carers from general practitioners, social workers or both; 13 of the children and carers were interviewed. RESULTS: All patients were at the severe end of the abuse spectrum; 12 involving direct induction of illness, 1 tampering with samples to mimic illness, and 4 fabrication of symptoms. The biological mother was the abuser in all cases. Four children and their parents had been initially admitted for assessment, and 13 for treatment to decide whether family reunification was viable. The 4 assessments clarified diagnosis, enabling improved care plans to be made. Of the 13 treatment cases, 10 were reunited with parents after a mean of 71/2 weeks' admission, whereas 3 were discharged to out of home care. There was a further episode of induced illness in 1 of the reunited children. Although some mothers had continuing mental health difficulties, only 1 of the other reunited cases had appreciable parent-child relationship difficulties (not requiring referral to psychiatric services). The children did well in their development, growth, and adjustment. CONCLUSION: Family reunification is feasible for certain cases, but long term follow up is necessary to ensure the child's safety and to identify deterioration in parent's mental health. The outcome for reunited children compared well with reported untreated cases.

Attitude to Health↗
PubMed1996

Factitious illness by proxy. Munchausen syndrome by proxy.

BACKGROUND: Since 1977 a literature has grown describing examples of factitious illness by proxy (FIP). METHOD: The literature in English was searched using MEDLINE and supplemented by a manual search. Extracted data focused on terminology of a spectrum of behaviours, clinical features and psychopathology of perpetrators. RESULTS: There has been difficulty with the use of terminology and classification of psychiatric disorders. CONCLUSIONS: The spectrum of FIP is wide. Suggestions are made for the use of terminology and classification when FIP is identified.

Adult↗
PubMed2003

Proxy reporting in after-death interviews: the use of proxy respondents in retrospective assessment of chronic diseases and symptom burden in the terminal phase of life.

This study evaluates the quality of data obtained from after-death interviews with significant others of deceased older persons regarding the prevalence of chronic diseases and symptoms in the terminal phase of life. These data are compared with reports from physicians and earlier self-reports from the deceased person. There were significant increases in nonresponse and nonavailability of significant others for decedents who had been divorced or had never been married, thus introducing some selection bias. At the level of the total sample, significant others seem to give accurate information about the prevalence of chronic diseases when compared with self-reports and reports from physicians. At the level of the individual sample member, after-death interviews with significant others provide valid information for the assessment of the prevalence of malignant neoplasms, diabetes mellitus, chronic obstructive pulmonary disease and cerebrovascular disease, but not for osteo- and rheumatoid arthritis and artherosclerotic disease. At the level of the total sample, the prevalence of symptoms assessed by significant others did not differ greatly from the assessment made by physicians. However, at the level of the individual sample member, the validity of symptom assessment by significant others could not be supported by data obtained from the physicians. With regard to the type of significant others interviewed, children reported more symptoms than partners. The use of significant others in after-death interviews can be a valid method with regard to the assessment of chronic diseases and symptoms on a group level. On an individual level this can be concluded only for chronic diseases with clearly observable consequences.

Aged↗
PubMed2002

Evaluation of proxy responses to the Stroke Impact Scale.

BACKGROUND AND PURPOSE: The purposes of this study were to compare proxy-patient responses on each domain of the Stroke Impact Scale (SIS) and the SIS-16, estimate the bias, and evaluate the validity of proxy scores. METHODS: Two hundred eighty-seven patient and proxy pairs from the Kansas City Stroke Registry participated in the study. All patients were assessed in their home or nursing facility between 90 and 120 days after stroke with the use of the modified Rankin Scale Motricity Index (strength), Barthel Index (activities of daily living), Lawton assessment (instrumental activities of daily living), Folstein Mini-Mental State Examination (cognition), and the SIS. Eligible proxies were individuals who were aged > or =18 years, had known the patient for at least 1 year, and saw the patient at least once each week. All proxy interviews were conducted within 7 days of (before or after) the patient's interview. RESULTS: Three hundred seventy-seven patients from the Kansas City Stroke Registry were eligible for the study. Seventy-seven patients or proxies refused participation. Thirteen patients of the consenting patient-proxy pairs were too aphasic or cognitively impaired to complete the interviews and were dropped from the study. Proxies scored patients as more severely affected than patients scored themselves on the SIS-16 and in 7 of 8 domains of the full SIS (5 were statistically significant at alpha=0.05). The proxy bias toward overrating the severity of the patient's condition tended to increase as the severity of the stroke increased. However, the magnitude of the biases between patient and proxy means, as measured by effect size, was small (range, -0.1 to 0.4). The strength of the agreement, as measured by intraclass correlation coefficients, between proxy and patient ranged from 0.50 to 0.83. Agreement was best for the observable physical domains. Both patient and proxy scores in all domains were significantly different across Rankin categories. Concurrent validity for both patient and proxy correlations with the Folstein Mini-Mental State Examination, Barthel Index, Lawton instrumental activities of daily living, and Motricity Index was good to excellent (range, 0.37 to 0.78). CONCLUSIONS: Proxies provide valid information for assessment of stroke outcomes. There are significant differences between patient and proxy reporting on SIS domains and the SIS-16. However, the observed biases are small and not clinically meaningful.

Activities of Daily Living↗
PubMed2006

How valid are family proxy assessments of stroke patients' health-related quality of life?

BACKGROUND AND PURPOSE: Proxy respondents are often needed to report outcomes in stroke survivors, but they typically systematically rate impairments worse than patients themselves. The magnitude of this difference, the degree of agreement between patients and proxies, and the factors influencing agreement are not well known. METHODS: We compared patient and family proxy health-related quality of life (HRQL) responses in 225 patient-proxy pairs enrolled in a clinical trial for poststroke depression. We used paired t-tests and the intraclass correlation (ICC) statistic to evaluate the agreement between patient and proxy domain scores and the overall Stroke-specific Quality of Life (SS-QOL) score. We used multivariate linear regression to model patient- and proxy-reported SS-QOL scores. RESULTS: Patients were older (63 versus 55 years) and less often female (48% versus 74%) than proxies. Proxies rated all domains of SS-SQOL slightly worse than patients. The Mood, Energy, and Thinking domains had the greatest disparity with mean patient-proxy differences of 0.45, 0.37, and 0.37 points, respectively. The ICC for each domain ranged from 0.30 (role function) to 0.59 (physical function). Proxy overall SS-QOL score was also lower (worse) than patient score (3.7 versus 3.4, P<0.001) with ICC of 0.41. Agreement was higher among patient-proxy pairs with higher patient depression scores and with lower proxy report of caregiving burden. CONCLUSIONS: Proxies systematically report more dysfunction in multiple aspects of HRQL than stroke patients themselves. Agreement between patient and proxy HRQL domain scores is modest at best and is affected by patient depression and proxy perception of burden. These differences may be large enough to impact the outcome assessment in stroke clinical trials.

Affect↗
PubMed2005

Do proxies reflect patients' health concerns about urinary incontinence and gait problems?

BACKGROUND: While falls and urinary incontinence are prevalent among older patients, who sometimes rely on proxies to provide their health information, the validity of proxy reports of concern about falls and urinary incontinence remains unknown. METHODS: Telephone interviews with 43 consecutive patients with falls or fear of falling and/or bothersome urinary incontinence and their proxies chosen by patients as most knowledgeable about their health. The questionnaire included items derived from the Medical Outcomes Study Short Form 12 (SF-12), a scale assessing concerns about urinary incontinence (UI), and a measure of fear of falling, the Falls Efficacy Scale (FES). Scores were estimated using items asking the proxy perspective (6 items from the SF-12, 10 items from a UI scale, and all 10 FES items). Proxy and patient scores were compared using intraclass correlation coefficients (ICC, one-way model). Variables associated with absolute agreement between patients and proxies were explored. RESULTS: Patients had a mean age of 81 years (range 75-93) and 67% were female while proxies had a mean age of 70 (range 42-87) and 49% were female. ICCs were 0.63 for the SF-12, 0.52 for the UI scale, and 0.29 for the FES. Proxies tended to understate patients' general health and incontinence concern, but overstate patients' concern about falling. Proxies who lived with patients and those who more often see patients more closely reflected patient FES scores compared to those who lived apart or those who saw patients less often. Internal consistency reliability of proxy responses was 0.62 for the SF-12, 0.86 for the I-QOL, and 0.93 for the FES. In addition, construct validity of the proxy FES scale was supported by greater proxy-perceived fear of falling for patients who received medical care after a fall during the past 12 months (p < .05). CONCLUSION: Caution should be exercised when using proxies as a source of information about older patients' health perceptions. Questions asking about proxies' views yield suboptimal agreement with patient responses. However, proxy scales of UI and fall concern are internally consistent and may provide valid independent information.

Accidental Falls↗
PubMedDate not supplied

Problems in using health survey questionnaires in older patients with physical disabilities. Can proxies be used to complete the SF-36?

BACKGROUND: The SF-36 Health Survey questionnaire has been proposed as a generic measure of health outcome. However, poor rates of return and high levels of missing data have been found in elderly subjects and, even with face-to-face interview, reliability and validity may still be disappointing, particularly in cognitively impaired patients. These patients may be the very patients whose quality of life is most affected by their illness and their exclusion will lead to biased evaluation of health status. A possible alternative to total exclusion is the use of a proxy to answer on the patient's behalf, but few studies of older people have systematically studied patient-proxy agreement. OBJECTIVE: To compare the agreement between patients, lay and professional proxies when assessing the health status of patients with the SF-36. METHODS: The SF-36 was administered by interview to 164 cognitively normal, elderly patients (Mini-mental State Examination 24 or more) referred for physical rehabilitation. The SF-36 was also completed by a patient-designated lay proxy (by post) and a professional proxy. Agreement between proxies and patients was measured by intraclass correlation coefficients (ICCs), and a bias index. RESULTS: Professional proxies were better able to predict the patients' responses than were the lay proxies. Criterion levels of agreement (ICC 0.4 or over) were attained for four of the eight dimensions of the SF-36 by professional proxies, but for only one dimension by lay proxies. In professional proxies, the magnitude of the bias was absent or slight (<0.2) for six of the eight dimensions of the SF-36 with a small (0.2-0.49) negative bias for the other two. Lay proxies showed a negative bias (i.e. they reported poorer function than did the patients themselves) for seven of the eight dimensions of the SF-36 (small in two and moderate (0.5-0.79) in five). CONCLUSIONS: For group comparisons using the SF-36, professional proxies might be considered when patients cannot answer reliably for themselves. However, in the present study, lay proxy performance on a postal questionnaire showed a strong tendency to negative bias. Further research is required to define the limitations and potentials of proxy completion of health status questionnaires.

Aged↗
PubMed1996

Enhancement of proxy appointment for older persons: physician counselling in the ambulatory setting.

OBJECTIVE: To determine the effectiveness of physician-initiated counselling on the rate of health care proxy appointment. DESIGN: Observational study of an intervention in a convenience sample. SETTING: A geriatric outpatient clinic in a tertiary care teaching hospital, New York, New York. PARTICIPANTS: A total of 687 patients enrolled in the geriatric clinic during the study period March 1991 through June 1993. INTERVENTION: Physician counselling about the New York State Health Care Proxy Law, distribution of educational materials and healthcare proxy forms, and reminders in 331 of 466 eligible patients. MEASUREMENTS: Rate of healthcare proxy appointment in eligible and counselled groups; predictors of appointment and non-appointment; time elapsed from counselling to appointment; reasons for non-appointment; characteristics of the proxy appointment process. RESULTS: A healthcare proxy was appointed for 31.5% of patients eligible for counselling and for 44% of patients who actually received the intervention, compared with a 2.3% proxy appointment rate at baseline. Eighty-one percent of the patients completing the proxy appointment process did so at or before their third clinic return visit after the counselling intervention. Of the counselled patients who did not appoint a proxy, 25% explicitly declined, and 75% had not come to a decision by the end of the study period. Proxy completion was associated with ethnicity, education, and more frequent clinic visits. Of those who appointed a proxy, 97% had good or fair comprehension of the procedure, 92% discussed the appointment with their designees, 63% appointed a daughter or son, and 80% discussed their wishes for care at the end of life with their proxy. CONCLUSIONS: Physician counselling of older outpatients is an effective means of increasing healthcare proxy appointments.

Advance Care Planning↗
PubMed1996

Reliability of data from proxy respondents in an international case-control study of cardiovascular disease and oral contraceptives. World Health Organization Collaborative Study of Cardiovascular Disease and Steroid Hormone Contraception.

STUDY OBJECTIVES: To evaluate the reliability of data supplied in a case-control study by proxy respondents for cases who were too ill to do so themselves. DESIGN: A hospital based, case-control study of the current use of oral contraceptives (OC) and cardiovascular diseases. Data from "true" controls matched to a subset of cases were compared with those supplied by proxy respondents about the true controls. SETTING: Hospitals in 21 centres from Africa, Asia, Europe, and Latin America. PATIENTS AND PARTICIPANTS: For a subset of cases, 403 pairs of controls-one "true" and one proxy-were interviewed. "True" controls were matched by age, place, and time of admission and were admitted with 1 of 27 permissible diagnoses not associated with OC use. Proxy controls were either relatives or friends of true controls. MAIN RESULTS: Levels of concordance between data from proxy and true controls were high for most variables regarding recent events, including current OC use, but were greatly diminished when detailed information, particularly from the past, was required. Husbands were usually the best proxy, although this was question-specific. The sensitivity and specificity of proxy responses were 93% (95% confidence intervals: 77%, 99%) and 100% (98%, 100%) respectively, for current use of OC. Assuming the misclassification of current OC use by proxy cases is similar to that produced by proxy controls, the estimated impact of using proxy data on risk estimates associated with current OC use was to bias the overall estimate of risk of stroke by less than 3% and the risks of both acute myocardial infarction and venous thromboembolism by less than 1%. CONCLUSIONS: Friends or relatives, and particularly husbands, provided reliable information when used as proxy respondents for young women. The estimated impact of misclassification by proxy respondents on overall risk estimates in the WHO collaborative study was less than that which would have arisen if information from proxy respondents had not been used.

Adult↗
PubMed1995

Agreement between self reports and proxy reports of quality of life in epilepsy patients.

Agreement between self reports and proxy reports of quality of life was examined in a sample of 292 patients with epilepsy and their designated proxies. Patients and proxies completed an 89-item Quality of Life Inventory (QOLIE-89), with the items rephrased for the proxy. Results reveal moderate correlations (product-moment r ranging from 0.29 to 0.56 for 17 multi-item scales) between self reports and proxy reports. Agreement was good for measures of function that are directly observable and relatively poor for more subjective measures. Mean scale scores were significantly different between patients and proxies for only five of 17 multi-item scales. Proxy respondents systematically reported better functioning than did patients in three scales assessing cognitive functioning (all p < 0.001). By contrast, patients reported more positive health perceptions and less seizure distress than proxies. Patient educational attainment correlated inversely with degree of disagreement between patient and proxy reports for six of the 17 QOL scales and for the overall score. In addition, proxy educational attainment correlated positively with agreement for four scales. This study indicates that for group level comparisons, proxy respondents can be substituted for adults with epilepsy having low to moderate seizure frequency. However, for individual level assessments proxies should be used with caution.

Adolescent↗