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PubMed1996

Marked improvement in recognition and completion of health care proxies. A randomized controlled trial of counseling by hospital patient representatives.

BACKGROUND: Advance directives provide a means for patients to retain influence on their medical care should decisional capacity be lost. Several studies have now demonstrated that advance directives that are completed in the ambulatory care setting are rarely available and recognized when patients are admitted to the acute care hospital. OBJECTIVE: To evaluate a generalizable model for improving recognition of previously completed advance directives and for promoting appointment of health care proxies in hospitalized patients. METHODS: Hospitalized elderly patients were randomly assigned to receive the intervention or usual care (n = 190). Intervention patients with capacity were counseled by hospital patient representatives about advance directives and encouraged to complete health care proxies. Patients with existing proxies had this information noted in their charts. For patients without capacity, counselors reviewed their charts for proxy documentation and if absent, contacted patients' next of kin and private physicians to determine proxy status. Usual care patients were not contacted by patient representatives. RESULTS: Forty-eight percent of intervention patients completed a new proxy or had a previously completed proxy identified compared with 6% of controls (P < .001). For patients with capacity, 22% of intervention patients had a previously appointed proxy agent identified compared with 6% of controls (P < .001). Thirty-six percent of intervention patients appointed a proxy decision maker compared with 0% of controls (P < .02). For patients without capacity, 31% of intervention patients had previously appointed proxies identified compared with 6% of controls (P < .001). CONCLUSIONS: Counseling by hospital patient representatives is an effective and generalizable means of improving recognition and execution of advance directives in the acute care hospital.

Advance Directives↗
PubMed2004

Agreement between dementia patient report and proxy reports using the Nottingham Health Profile.

OBJECTIVE: The aim of the study was to examine the agreement between patient reports and their proxy reports (family and care provider proxies) on Health Status in a sample of patients with dementia. METHOD: Ninety-nine patients with mild to moderate dementia and proxies completed the 38-item Nottingham Health Profile (NHP) questionnaire. RESULTS: Completion rates for the different NHP dimensions ranged from 78 to 90% for the dementia subjects. Inter-rater agreement between different proxies and subject was from moderate to good for physical assessment (ICCs from 0.54 to 0.78 for physical mobility scales). Patient/family proxy concordance was moderate to good for five out of six dimensions (physical mobility, social isolation, pain, energy, sleep) and poor for emotional reaction. Family proxies systematically reported lower functioning than did patients in the four subscales assessing: physical mobility (p <0.0001), energy (p <0.005), social isolation (p <0.01) and sleep (p <0.03). Care provider proxies only estimated physical mobility as lower (p <0.0001). CONCLUSION: Age and physical status of the patient significantly affected agreement in patient-care provider proxy ratings. Thus, caution is appropriate when resorting to proxies to estimate the Health Status of a dementia patient.

Aged↗
PubMed2006

Preferring proxy-agency: impact on self-efficacy for exercise.

We examined: (a) the social-cognitions of those who differ in preferred level of proxy-assistance in both proxy-led and independent exercise contexts; and (b) the relationships between proxy-agency and reliance. Sixty-five fitness class participants completed measures of self-regulatory efficacy, task self-efficacy, exercise intentions, proxy-efficacy and perceived reliance. A 2 (exercise context) by 2 (preferred assistance) MANOVA revealed significant main effects for assistance and context. Also, significant assistance by context interactions was found for both efficacies. When facing exercise without a proxy, individuals preferring high proxy assistance expressed lower self-regulatory and task self-efficacy. Finally, proxy- and self-regulatory efficacy were shown to be separate predictors of reliance on a proxy. Results support Bandura's theorizing about the proxy-led context and its influence on self-regulatory efficacy.

Adolescent↗
PubMed2003

Agreement between proxy- and case-reported information obtained using the self- administered Ontario Familial Colon Cancer Registry epidemiologic questionnaire.

Case-control studies of fatal cancers often rely on proxy respondents. Therefore, it is important to determine the completeness and accuracy of proxy-reported information. We evaluated proxy reports using the Ontario Familial Colon Cancer Registry epidemiology questionnaire. A proxy questionnaire was completed by spouses or relatives identified by a sample of participating cases. Item non-response and percentage agreement (between case and proxy reports) were assessed. More than 30% of proxies were unable to report on physical activity, gynecological surgery, alcohol intake, weight 20 years ago, and oral contraceptive use. Proxy reports of medical history and bowel screening varied, the percentage missing ranging from 5% for diabetes to 44% for familial polyposis in the case of medical history, and from 4% for colonoscopy to 27% for hemoccult tests in the case of screening. Agreement between case and proxy report was good to excellent for colonic screening, most medical history, and for reproductive, medication and vitamin use variables (74% to 100%). It is useful to collect proxy information on such variables as medical history, parity, colonic screening and vitamin use, whereas oral contraceptive use and previous weight are not well reported.

Case-Control Studies↗
PubMed1999

Feasibility of a healthcare proxy counseling program for patients with Alzheimer's disease.

BACKGROUND: Although significant progress has been made in the implementation of advance directive counseling programs for cognitively intact patients, there is a paucity of information on the outcome of these programs with patients with Alzheimer's disease. This study investigated the prevalence of completed healthcare proxies in a sample of Alzheimer's disease outpatients, and the feasibility of a systematic proxy counseling program for this population. METHODS: The setting was a geriatric psychiatry clinic. Ninety-four patients with Alzheimer's disease were surveyed for their previous completion of a healthcare proxy. All patients with capacity and without a proxy were approached to complete the advance directive with a lay counselor. RESULTS: Thirty-two percent (n = 30) of patients had completed a proxy prior to the initiation of a counseling program. Of patients without proxies (n = 64), 89% had capacity to complete one. Seventy-nine percent subsequently completed a proxy through the counseling program. Hispanics were least likely to have had a proxy prior to initiation of the program, yet were very willing to complete the document. CONCLUSIONS: The majority of patients with Alzheimer's disease in an outpatient setting did not have healthcare proxies, yet had the capacity and motivation to complete this advance directive. With physician input regarding the presence of decisional capacity, a lay counselor successfully implemented the counseling process. These results support the initiation of similar counseling programs for Alzheimer's outpatients.

Journal Article↗
PubMed1997

The use of significant others as proxy raters of the quality of life of patients with brain cancer.

OBJECTIVES: The use of self-report questionnaires for the assessment of health-related quality of life (HRQOL) is increasingly common in clinical research. This method of data collection may be less suitable for patient groups who suffer from cognitive impairment, however, such as patients with brain cancer. In such cases, one can consider employing the patients' significant others as proxy raters of the patients' health-related quality of life. The authors examined the response agreement between patients with brain cancer and their significant others on a health-related quality of life instrument commonly used in cancer clinical trials, the EORTC QLQ-C30, and on a brain cancer-specific questionnaire module, the QLQ-BCM. METHODS: The study sample consisted of 103 pairs of patients, with either recently diagnosed or recurrent brain cancer, and their significant others (75% spouses, 22% relatives, and 3% friends). Patients and proxies independently completed the EORTC QLQ-C30 and the QLQ-BCM at three different times. RESULTS: Approximately 60% of the patient and proxy scores were in exact agreement, with more than 90% of scores being within one response category of each other. For most HRQOL dimensions assessed, moderate to good agreement was found. Statistically significant differences in mean scores were noted for several dimensions, with proxies tending to rate the patients as having a lower quality of life than the patients themselves. With the exception of fatigue ratings, this response bias was of a limited magnitude. Less agreement and a more pronounced response bias was observed for the more impaired patients, and particularly for patients exhibiting mental confusion. This finding was confirmed by longitudinal analyses, which indicated lower levels of patient-proxy agreement at follow-up for those patients whose physical or neurologic condition had deteriorated over time. CONCLUSIONS: In general, patients and their significant others provide similar ratings of the patients' quality of life. Lower levels of agreement and more biased ratings can be expected among those patients for whom the need for proxies is most salient. It is argued, however, that discrepancies between patient-proxy ratings should not be interpreted, a priori, as evidence of the inaccuracy or biased nature of proxy-generated data. Future studies are needed to examine the relative validity and reliability of patient-versus proxy-generated health-related quality of life scores.

Adolescent↗
PubMed1996

Proxies for healthcare need among populations: validation of alternatives--a study in Quebec.

STUDY OBJECTIVE: To compare the use of a non-mortality based proxy for relative needs for healthcare among regional populations with a mortality based proxy for population relative needs and to evaluate the additional value of a proxy based on a combination of non-mortality and mortality based proxies. DESIGN: Analysis of cross sectional data on mortality, socioeconomic status, and self assessments of health taken from registrar general records, a population census, and a population health survey. SETTING: The province of Quebec, Canada. COVERAGE: The populations of the 15 health regions in Quebec. MAIN OUTCOME MEASURE: The levels of correlation of indicators based on mortality data, socioeconomic data, and combined data with a standardised indicator of self assessed health. RESULTS: Variations in scores of a proxy based on socioeconomic data among regions explain 37% of the observed variation in self assessed health, 4% more than the level of variation explained by the standardised mortality rate scores. A weighted combination of both mortality and socioeconomic based proxies explains 56% of variation in self assessed health. CONCLUSIONS: Justification of "deprivation weights" reflecting variations in socioeconomic status among populations should be based on empirical support concerning the performance of such weights as proxies for relative levels of need among populations. The socioeconomic proxy developed in this study provides a closer correlation to the self assessed health of the populations under study than the mortality based proxy. The superior performance of the combined indicator suggests that the development of social deprivation indicators should be viewed as a complement to, as opposed to a substitute for, mortality based measures in needs based resource allocation exercises.

Adolescent↗
PubMed1997

[Proxy informant reliability and bias in epidemiological research: analysis of a screening questionnaire for mental disorders].

OBJECTIVES: To evaluate the reliability, magnitude and direction of the resulting bias in the application of a screening instrument for mental disorders by considering proxy informants in comparison to primary informants. METHODS: Data are taken from a general morbidity community-based survey carried out in 520 randomly selected households of an industrial area of the Metropolitan Region of Salvador, the capital of Bahia state, Brazil. During the pilot phase, the first 70 families of the total sample were asked to participate in the evaluation of research instruments. The Questionnaire of Adult Psychiatric Morbidity, QAPM, consists of 44 questions about psychiatric symptoms widely used in Brazil. The husbands and wives of the selected families answered QAPM questions regarding themselves and their respective partners. One family refused to participate. The Kappa index was estimated for each QAPM question. To assess the magnitude and direction of bias, the proportional variation of prevalence was estimated from proxy and primary respondents. Each informant was analyzed as a primary informant when answering about his/her own symptoms and as a proxy informant when answering those about his/her partner. RESULTS: Proxy informants as compared to primary informants show weak reliability, as measured by the Kappa Index, particularly when husbands reported on their wives' symptoms. An overall underestimation of prevalence estimates was found, which reveals the potential negative bias with the use of proxy informants for psychological symptoms. No bias was found for only two questions (lack of appetite and globus hystericus) when women were taken as proxy informants for their husbands. In addition, departures of proxy informants from primary informant-based estimates were greater among men than to women. CONCLUSIONS: Proxy informants underestimate the occurrence of psychological symptoms in this community-based study. When the feasibility of a research project, based on the QAPM depends on the use of proxies, wives may be recommended as better informants than their husbands.

Adolescent↗
PubMed1989

Using proxies to evaluate quality of life. Can they provide valid information about patients' health status and satisfaction with medical care?

Instruments using interview data to measure health status have been increasingly used to measure patient outcomes. To assess the potential utility of proxy responses about health status when subjects are unable to respond, the authors compared the responses of 60 subject and proxy pairs on instruments measuring overall current health, functional status, social activity, emotional health, and satisfaction with medical care. Proxies were asked to respond as they thought the subject would. Subject and proxy responses were strongly correlated with each other for overall health, functional status, social activity, and emotional health (P less than .001), and moderately correlated for satisfaction (P less than .005). Proxies reported lower emotional health and satisfaction than did subjects (P less than .005). Proxy and subject mean responses were generally similar for overall health, functional status, and social activity. However, those proxies who spent more time per week helping the subject rated the subject's functional status and social activity as more impaired than did the subject (P less than .05). Subjects who had poorer overall health tended to rate their health relatively lower than did the proxies (P less than .05). These results suggest that use of proxies intermingled with subjects to measure health status through interview may lead to biased results.

Activities of Daily Living↗
PubMed2005

Proxy reports in Parkinson's disease: caregiver and patient self-reports of quality of life and physical activity.

We evaluated patient-proxy agreement in a population of veterans with Parkinson's disease and compared levels of agreement by patient subgroups. Patient and caregiver pairs completed questionnaires composed of standard measures and additional demographic and activity questions. Participants completed the Center for Epidemiologic Studies Depression Scale (CES-D), the PD Questionnaire 39 (PDQ-39), and three questions regarding physical activity. Caregivers completed proxy forms of the PDQ-39 and the physical activity questionnaire. The proxy forms asked caregivers to choose the answers that best described their "friend's/patient's situation." The results of our comparison of patient and proxy reports of quality of life were consistent with findings in other diseases. On average, proxies rated patient disability higher and quality of life lower than did patients. However, our comparison of patient and proxy reports of frequency of exercise diverged from previously published work. Less agreement was observed between patient and proxy reports of physical activity, even though this is a more objective variable than are the domains measured by the PDQ-39. Proxy reports may diverge appreciably from patient self-reports. These differences should be considered in research design and clinical decision making. Alternative approaches to the measurement of patient relevant outcomes could supplement traditional, retrospective self-reports.

Aged↗
PubMed2003

Judging the quality of care at the end of life: can proxies provide reliable information?

A major challenge in research into care at the end of life is the difficulty of obtaining the views and experiences of representative samples of patients. Studies relying on patients' accounts prior to death are potentially biased, as they only represent that proportion of patients with an identifiable terminal illness, who are relatively well and therefore able to participate, and who are willing to take part. An alternative approach that overcomes many of these problems is the retrospective or 'after death' approach. Here, observations are gathered from proxies, usually the patient's next of kin, following the patient's death. However, questions have been raised about the validity of proxies' responses. This paper provides a comprehensive review of studies that have compared patient and proxy views. The evidence suggests that proxies can reliably report on the quality of services, and on observable symptoms. Agreement is poorest for subjective aspects of the patient's experience, such as pain, anxiety and depression. The findings are discussed in relation to literature drawn from survey methodology, psychology, health and palliative care. In addition to this, factors likely to affect levels of agreement are identified. Amongst these are factors associated with the patient and proxy, the measures used to assess palliative care and the quality of the research evaluating the validity of proxies' reports. As proxies are a vital source of information, and for some patients the only source, the paper highlights the need for further research to improve the validity of proxies' reports.

Health Services Research↗
PubMed2006

Family members as proxies for satisfaction with nursing home care.

BACKGROUND: Many benefits to collecting and reporting satisfaction information from nursing home residents, including promoting quality initiatives, consumer choice, and improved care, have been described. Yet barriers to collecting resident satisfaction information exist, the most significant of which is the often low cognitive status of residents. An alternative source of information can come from family members serving as proxies for the residents. A study was conducted to explore the agreement and association of nursing home residents' responses with family member proxy responses. METHODS: Satisfaction data from 286 paired residents and family members in 42 facilities were collected in 1999. The satisfaction questionnaire consisted of 16 items evaluating the art of care, technical quality, efficacy, amenities of the care environment, and global satisfaction. Bias indexes, intraclass correlation coefficients, and Pearson's product-moment correlation coefficients were used to compare resident and proxy responses. RESULTS: In general, proxy satisfaction ratings were higher than the same ratings given by residents. Proxy ratings varied less from residents' ratings for the amenities items, which were considered the most concrete items. Proxy ratings were much higher for the art of care and efficacy domain items--the least concrete questions. DISCUSSION: Proxy ratings do not necessarily substitute for resident ratings and are dependent on the nature of the question asked. Examining resident-proxy responses at different points in time may be useful.

Aged↗
PubMed2000

Functional abilities and continence: the use of proxy respondents in research involving older people.

As the use of proxy respondents is sometimes necessary in research involving older or disabled people it is important to assess the impact of this on research results. This study examined the concordance of proxy responses and index responses on questions concerning functional abilities and continence. Index respondents were women aged 65 years and older who were interviewed as part of a larger study of outcomes of fractured neck of femur, at 5 days post surgery. They were asked to nominate a proxy respondent who was interviewed using the same questions within a few days. Responses of proxy and index respondents were compared using percentage agreement and Kappa statistics. On questions regarding functional ability, proxy responses were found to be more reliable for personal care activities than for instrumental activities of daily living. This may be a result of questions concerning instrumental activities being somewhat more ambiguous and open to individual interpretation. Item non-response was low for all questions thus resulting in little missing data for proxy respondents. There was a tendency for more distant relationship and contact to produce better agreement, which is contrary to previous findings. Proxy responses were biased in the direction of an overestimation of functional incapacity and so researchers should be cautious in combining data from proxy and index respondents. Concordance was good for questions concerning urinary and faecal incontinence although non-response was higher than for functional ability questions. Concordance was not as great for more detailed questions concerning the timing and frequency of incontinence as these used graded response options, rather than simple yes/no responses.

Activities of Daily Living↗
PubMed2000

Participant-proxy reliability in traumatic brain injury outcome research.

OBJECTIVE: To assess reliability between persons with Traumatic Brain Injury (TBI) and their self-selected proxies. DESIGN: Intraclass Correlation Coefficients were used to assess participant-proxy reliability on the Craig Handicap Assessment and Reporting Technique (CHART), the Community Integration Questionnaire (CIQ), and the Functional Independence Measure (FIM). SETTING: Participants had been discharged to the community from inpatient rehabilitation between six months and approximately five years prior to the study's beginning. PARTICIPANTS: 204 persons with moderate to severe TBI and their self-selected proxies. RESULTS: Eighty-seven percent of the items on the three instruments exhibited moderate to high intraclass correlation (ICC), with strongest participant-proxy agreement for questions assessing concrete, observable information. Participant-proxy agreement was poorest when assessing cognitive and money management capacity as well as out-of-home activities. CONCLUSIONS: For many types of items, participant-proxy reliability is sufficient to merit the use of proxies in TBI outcome research when the participants are allowed to select their own proxy.

Adolescent↗
PubMedDate not supplied

Community integration status 4 years after traumatic brain injury: participant-proxy agreement.

OBJECTIVES: To measure the level of agreement on community integration outcomes 4 years after traumatic brain injury (TBI) in relation to injury severity, proxy-participant relationship, and type of question. PARTICIPANTS: Thirty-one survivors of TBI (14 with mild TBI and 17 with moderate-severe TBI) and 31 significant other proxies. MEASURES: General and leisure activity scales of the Katz Adjustment Scale (KAS). RESULTS: Agreement was highest between proxies and participants with mild versus moderate-severe TBIs, between spouse proxies and TBI participants compared to nonspouse proxies and on the more objective subscales (frequency of participation) compared to the expectation and satisfaction scales regardless of injury severity or proxy-participant relationship. CONCLUSIONS: For research purposes, proxy data are acceptable but clinicians should assess outcomes and set goals with input from both persons with TBIs and their proxies.

Adaptation, Psychological↗
PubMed2000

The use of proxy respondents in studies of older adults: lessons, challenges, and opportunities.

OBJECTIVE: Proxies play a critical role as sources of health information for older persons with cognitive impairment and other chronic debilitating conditions. This paper reviews the validity of proxy responses for people older than age 60 in the following areas: functioning, physical and mental health, cognition, medical care utilization, and preferences for types of care and health states. DESIGN: A Medline review identified 24 clinical studies from 1990 to 1999 that use proxy data as a source of information about older adults. RESULTS: In general, studies report fairly good agreement between subjects and proxies in assessments of functioning, physical health, and cognitive status, and fair-to-poor agreement in assessments of psychological well-being. Proxies tend to describe more impairment in functioning and emotional well-being, relative to subjects, a pattern that is particularly marked among persons with cognitive impairment. In addition, proxies who report more caregiver responsibilities and subjective stress from caregiver duties provide more negative assessments of subjects' health and well-being. CONCLUSIONS: Findings tend to support the use of proxy ratings among older adults in many areas but not all when self-reports are not feasible. There is a need for more evaluation of proxy data in relation to other measures, such as performance assessments, medical records, and claims data, which may be less subject to respondent biases.

Activities of Daily Living↗
PubMed2004

Concordance of proxy-perceived change and measured change in multiple domains of function in older persons.

OBJECTIVES: To compare proxy perceptions about change over 6 months in physical, instrumental, affective, and cognitive functioning of older persons with computed change in patient self-report and performance and patient's own perceptions about change. DESIGN: Prospective study. SETTING: Recovery from hip fracture that occurred in community-dwelling persons in Baltimore, Maryland, in 1990-91. The recovery from the sixth to the 12th month postfracture was observed. PARTICIPANTS: One hundred forty-one hip fracture patients aged 65 and older and a self-designated proxy for each. MEASUREMENTS: For specific tasks of physical and instrumental functioning, proxy perception of change over the previous 6 months asked in the 12th month postfracture was compared with change in criterion measures (subject self-report and observed performance) from the sixth to the 12th month postfracture. For global change over the previous 6 months in each area of functioning, proxy perception was compared with the subject's own perception in the 12th month postfracture. RESULTS: Agreement between proxy perceptions of change and change in criterion measures was poor. There was a general pattern for proxies to overstate improvement and understate deterioration in comparison with change observed in criterion measures for specific tasks of physical and instrumental functioning. Proxies' global perceptions reported subjects improving less and deteriorating more than patients' own perceptions. CONCLUSION: Proxy perceptions about task-specific and global changes in subjects' functional health over a short period of time are systematically different from patient report and observed performance.

Activities of Daily Living↗
PubMedDate not supplied

Which primary care resident is more likely to initiate the discussion of designating a healthcare proxy?

Despite widespread support for the concept of advance care planning, few Americans have a healthcare proxy. It is not known if certain physician characteristics make it less likely that the discussion of a healthcare proxy will be initiated, particularly in the case of physicians in training. The objective of this descriptive, cross-sectional study was to determine if resident characteristics (specialty, race, age, gender, and religion) affect his or her decision to initiate discussions with patients regarding designation of a healthcare proxy. Participants consisted of primary care residents employed at The Brooklyn Hospital Center, Brooklyn, New York, from the departments of Internal Medicine, Pediatrics, Obstetrics and Gynecology, and Family Practice. An anonymous 14-item questionnaire was distributed to all primary care residents (N = 151) at the hospital during their respective conferences and grand rounds. Seventy-eight residents returned the instrument for analysis. When compared to other primary care specialties (n = 40), internal medicine residents (n = 38) were more likely to initiate healthcare proxy discussions with patients (p < 0.05). Residents who were younger than 35 were more inclined to encourage decision-making by surrogates (p < 0.05). Of the total number of residents, 92 percent correctly defined a healthcare proxy, and 66 percent thought a physician should initiate patient selection of a healthcare proxy, yet only 55 percent of physicians did so. Our results indicated that a little over half of the physicians surveyed initiated discussion for a surrogate decision-maker, even though most thought it was their duty. Younger internal medicine residents are more likely to ask patients about healthcare proxies. Some residents were unable to correctly identify the definition of a healthcare proxy, and this lack of knowledge is likely to result in poor advance care planning.

Adult↗