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At least 145 records · Page 8Linked to original sources
PubMed2005

Proxy assessment of quality of life in pediatric clinical trials: application of the Health Utilities Index 3.

BACKGROUND: With increased cure rates, pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease, symptoms, and functional capacity. PROCEDURE: Nurses as proxy respondents used the Health Utilities Index 3 (HUI3) to assess the health-related quality of life (HRQL) in twenty-five patients (age 6 years or older) enrolled on a frontline protocol for leukemia. HRQL observations (n = 70) were made at three different time points to coincide with high-dose methotrexate therapy. Additionally, the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined, the number of unassessable HRQL items increased. These missing data made scoring cumbersome and precluded calculation of the overall HRQL scores for nearly 50% of the patients. CONCLUSIONS: Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child's illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children's quality of life.

Adolescent↗
PubMed2006

Agreement between patient and proxy responses during recovery after hip fracture: evidence for the FIM instrument.

OBJECTIVE: To evaluate the agreement between patient and proxy responses of the FIM instrument at 4 different periods of time during the first 6 months after hip fracture. DESIGN: Prospective cohort study. SETTING: A large urban health region with 2 tertiary hospitals that treat hip fractures. PARTICIPANTS: Patients (n=137) who were 65 years or older, admitted to the health region with a primary diagnosis of hip fracture, who had Mini-Mental State Examination scores greater than 17. Family caregivers (n=137) participated as proxy respondents. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The FIM instrument. Agreement was evaluated at each of the 4 assessments during the 6-month follow-up after hip fracture using intraclass correlation coefficient. RESULTS: FIM scores improved over the 6 months with the greatest improvement occurring within the first month of recovery. Agreement was higher for more observable activities than less observable ones. The magnitude of agreement improved over the 6 months with the proportion of clinically important systematic differences decreasing over time. Agreement for change scores was lower than the agreement at each of the 4 assessments. CONCLUSIONS: Patient-proxy agreement levels are acceptable; the agreement varies with the subscale and the recovery phase. Substitution of proxy for patient responses across time may be used guardedly when patient responses are missing.

Activities of Daily Living↗
PubMed2006

Proxy respondents reliably assessed the quality of life of elective cardiac surgery patients.

BACKGROUND AND OBJECTIVE: The level of agreement between index and proxy respondents on assessment of health status of clinical cohorts is variable. There is limited information regarding agreement between cardiac surgery patients and their proxies, and levels of agreement examined across repeated measures. This study examined the level of agreement between index and proxy respondents' perceptions of the patient's health status prior to and following cardiac surgery. METHODS: A prospective, paired-respondent, repeated measures observational study of elective cardiac surgical patients and their next of kin, from the cardiac surgical unit of a tertiary hospital in Sydney, Australia. Health status domains were examined using the15D and SF-36 instruments at three points: prior to surgery, at hospital discharge, and at 6 months post discharge. RESULTS: Moderate to good level of agreement was noted for physical function (physical functioning, role functioning-physical, mobility, breathing, speech, hearing, usual activities, sexual activities) and some psychosocial dimensions (role functioning-emotional, sleeping, depression, mental health). Agreement was highest for presurgery and 6 months post discharge. Differences in scores were not clinically important. CONCLUSION: Proxy respondents can reliably assess the quality of life of a cardiac surgical patient using 15D or SF-36, particularly for domains reflecting physical function.

Cardiac Surgical Procedures↗
PubMed2004

Preferences in end-of-life care of older persons: after-death interviews with proxy respondents.

This population-based study employing after-death interviews with proxies describes older persons' preferences regarding medical care at the end of life. Interviews were held with 270 proxy respondents of 342 deceased persons (age range 59-91) in the Netherlands, The deceased were respondents to the Longitudinal Aging Study Amsterdam. The prevalence of advance directives (ADs), preferences for medical decisions at the end of life (i.e. withholding treatment, physician-assisted suicide euthanasia) and preferences about the focus of treatment in the last week of life (i.e. comfort care versus extending life) were examined. Written ADs were present in 14% of the sample. A quarter had designated a surrogate decision-maker. Co-morbidity and perceived self-efficacy (PSE) were positively associated with ADs. About half the sample had expressed a preference in favour or against one or more medical decisions at the end of life. Predictors positively associated with expressing a preference were co-morbidity, dying from cancer, and PSE. Being religious was negatively associated with expressing a preference. The knowledge of the proxy regarding the older person's preference for the focus of treatment was dependent on the patient's symptom burden as perceived by the proxy. The majority of older persons had died without either an AD, or having expressed preferences for end-of-life care. Stimulating the formulation of ADs may help professionals who work with older people to understand these preferences better, especially in the case of non-cancer patients and those with low PSE.

Advance Directives↗
PubMed1999

Proxy respondents and the reliability of the Quality of Life Questionnaire Empowerment factor.

Previous studies have questioned the reliability of Quality of Life Questionnaire (QOL-Q) Empowerment scores, and reported marked disagreement between consumers' self-reports and proxy data from staff informants. The present study examined agreement between consumer self-reports and proxy responses from community living staff for 63 adults with intellectual disability. Substantial positive correlations between consumers and staff were evident No significant difference was found between total QOL-Q Empowerment scores for self- or staff reports. It was concluded that the QOL-Q Empowerment factor is sufficiently reliable for use both by self-report and proxy respondents. Even so, proxy data are not a substitute for consumer self-reports and the two data sources should not be treated as being interchangeable.

Adolescent↗
PubMed2002

Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity.

This report examines whether long-term care facilities should implement policies and procedures to support advance care planning by proxy for residents who lack decision-making capacity. The report focuses on advance care planning in the Department of Veterans Affairs. After reviewing clinical, legal, and ethical perspectives, the authors conclude that advance proxy planning is ethically sound and can improve patient care. However, because experience with advance proxy planning is still fairly limited, the authors do not recommend that a particular standardized approach be mandated at the national level. Instead, local facilities are advised to develop their own policies and then evaluate their effect. The report contains specific recommendations for the advance proxy planning process.

Advance Directives↗
PubMed2002

Use of family proxies in quality of life research for cancer patients at the end of life: a literature review.

One of the main goals of end-of-life care is to achieve the best quality of life (QOL) for patients and their families. Quality of life, therefore, represents a significant outcome indicator to evaluate end-of-life care interventions. However, nonresponse bias and nonrandom missing data in QOL research at the end-of-life limits the generalizability and threatens the internal validity of the study findings. The use of family proxy of patients' QOL has been suggested as a solution. Demonstration of satisfactory levels of agreement between proxies and patients is warranted before family caregivers' or other proxies' assessments can be employed when patients cannot provide their own information. Contrary to the conclusion made by Sprangers and Aaronson [The Role of Health Care Providers and Significant Others in Evaluating the Quality of Life of Patients with Chronic Disease: A Review. J. Clin. Epidemiol. 1992, 45, 743-760], it is suggested from this review of literature that terminal cancer patients and their family caregivers agreed at least moderately well on the patients' QOL. The bias introduced by the use of family informants is generally of a modest magnitude. When discrepancies existed, without exception, family caregivers held a more negative view of patients' QOL than did patients. When using family proxies, this is important to remember. The degree of agreement between terminal cancer patients' and their family caregivers' assessments varies as a function of the dimensions of QOL being measured and the patient's health status. However, the accuracy of family caregivers' assessments can be improved by assessing both patients and family caregivers concurrently over time. Several suggestions for future research are provided to better understand the influencing factors of agreement between patients and family assessments and to enhance the quality of statistical analyses on this topic.

Attitude to Health↗
PubMedDate not supplied

Munchausen syndrome by proxy: a case report.

Munchausen syndrome by proxy is difficult to diagnose unless healthcare providers are astute to its clinical features and management. A case is presented to educate nurses and advanced practice nurses, of the nursing, medical, legal, and social complexities associated with Munchausen syndrome by proxy. This article also provides a brief review of the definition of Munchausen syndrome by proxy, its epidemiology, common features of the perpetrator, implications for healthcare personnel, and the legal and international ramifications of Munchausen syndrome by proxy.

Bacteremia↗
PubMed2000

Decision-making capacity to execute a health care proxy: development and testing of guidelines.

OBJECTIVE: To evaluate the reliability and validity of guidelines to determine the capacity of nursing home residents to execute a health care proxy (HCP). DESIGN: A cross-sectional study. SETTING: A 750-bed not-for-profit nursing home located in New York City. PARTICIPANTS: A random sample of 200 nursing home residents: average age, 87; 99% white; 83% female; average length of stay, 3.05 years; mean Mini-Mental State Exam (MMSE) score, 15.9. MEASUREMENTS: Demographic characteristics (Minimum Data Set (MDS)); function and cognitive status (Institutional Comprehensive Assessment and Referral Evaluation (INCARE)); Reisberg Dementia Staging; MMSE; Minimum Data Set-Cognitive Performance Scale (MDS-COGS)); an investigator-developed measure of a nursing home resident's capacity to execute a health care proxy (Health Care Proxy (HCP) Guidelines.) RESULTS: The internal consistency of the decision-making scales in the HCP Guidelines, paraphrased recall and recognition, reached acceptable levels, alphas of .85 and .73, respectively. Interrater reliability estimates were .92 and .94, respectively, for the recall and recognition scales; test-retest reliability estimates were .83 and .90. The discriminant validity of these scales is promising. For example, the MMSE correlation was .51 with the Recall scale and .57 with the Recognition scale. Of residents with severe cognitive impairment (MMSE < 10), 71% completed 50% or more of the scaled items in the HCP guidelines and 95% consistently named a proxy. CONCLUSIONS: Seventy-three percent of testable residents, approximately three-quarters of whom were cognitively impaired, evidenced sufficient capacity to execute an HCP. Of residents with severe cognitive impairment, the HCP guidelines are potentially useful in identifying those with the capacity to execute a HCP. The guidelines are more predictive than the MMSE in identifying residents able to execute a HCP.

Activities of Daily Living↗
PubMed2006

The effect of proxy voice intervention on couple softening in the context of enactments.

In this study we evaluated the effectiveness of proxy voice (therapist acting as client's "voice") intervention, embedded within couple enactments, on client-perceived softening. The primary research question was whether use of proxy voice would be more likely to bring about softening, or if its use was counterintuitive to enactment conceptualization and would elicit struggle behavior (e.g., withdrawal or negativity). Results indicate that proxy voice has a significant, positive association with softening and is inversely related to withdrawal or negativity. Preliminary findings suggest that proxy voice intervention embedded within a fluid, carefully delineated, and discriminating model of enactments effectively facilitates essential elements of couple interaction (expression of primary affect and articulation of self-concept and attachment threats) while promoting self-reliant couple interaction and increased softening.

Adolescent↗
PubMed1999

A comparison of patient and proxy symptom assessments in advanced cancer patients.

The purpose of this study was to compare patient and proxy (physician and nurse) assessments of symptoms in advanced cancer patients. The sample consisted of 49 patients with advanced cancer admitted to an acute palliative care unit. Three independent assessments were completed for each patient on two occasions within 11 days of admission. On each occasion, symptoms were rated independently by the patient and two proxies (treating physician and nurse), using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale (VAS) for assessing pain, activity, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Symptom ratings were compared using a repeated-measures ANOVA procedure and correlations. Average physician ratings were generally lower than average patient ratings for both occasions. Average nurse ratings agreed more closely with patient ratings, with a trend towards lower ratings on occasion 1 and higher ratings on occasion 2. There was a significant rater (person rating the effects) effect (P < 0.01) for three of the nine symptoms: physicians rated drowsiness, shortness of breath and pain significantly lower than patients. For drowsiness and shortness of breath, these differences were clinically relevant, representing a difference of more than 12 mm on a 100-mm VAS. The accuracy of assessments amongst those rating the symptoms did not improve over time. Proxy assessments of symptom intensity, particularly by physicians, were significantly lower than patient assessments for three of the nine symptoms. Further research regarding the reliability of patient and proxy assessments is needed to assess and manage symptoms in advanced cancer effectively.

Aged↗
PubMed2005

Attachment representations in mothers with abnormal illness behaviour by proxy.

BACKGROUND: Abnormal illness behaviour by proxy (also known as factitious illness by proxy or Munchhausen syndrome by proxy) is a type of child maltreatment, the origins of which are poorly understood. AIMS: To describe attachment representations in a cohort of mothers demonstrating abnormal illness behaviour by proxy. METHOD: Sixty-seven mothers who had shown this behaviour took part in a semistructured interview assessing their attachment representations. RESULTS: Only 12 mothers (18%) were rated secure in terms of their own childhood attachments. There was evidence of unresolved trauma or loss reactions in 40 mothers (60%). Eighteen mothers (27%) gave unusually disorganised and incoherent accounts of attachment relationships in their own childhoods. The frequency of these attachment categories is higher than in normal non-clinical samples. CONCLUSIONS: Insecure attachment is a risk factor for this type of child maltreatment. Therapeutic interventions could be offered in relation to unresolved traumatic stress or bereavement responses. Further study of similar groups, such as mothers with sick children or mothers with histories of traumatic experience, would be a useful next step.

Adult↗
PubMed2006

The Prospective and Retrospective Memory Questionnaire (PRMQ): latent structure, normative data and discrepancy analysis for proxy-ratings.

OBJECTIVES: To evaluate the proxy-rating version of the Prospective and Retrospective Memory Questionnaire (PRMQ) and provide norms and methods for score interpretation. DESIGN: Cross-sectional and correlational. METHODS: The PRMQ was administered to a large sample drawn from the general adult population (N=570). Confirmatory factor analysis (CFA) was used to test competing models of its latent structure. Various psychometric methods were applied to provide clinicians with tools for score interpretation. RESULTS: The CFA model with optimal fit specified a general memory factor together with additional prospective and retrospective factors. The reliabilities of the PRMQ were acceptable (.83 to .92), and demographic variables did not influence ratings. Tables are presented for conversion of raw scores on the Total scale and Prospective and Retrospective scales to T scores. In addition, tables are provided to allow users to assess the reliability and abnormality of differences between proxy ratings on the Prospective and Retrospective scales. Finally, tables are also provided to compare proxy-ratings with self-ratings (using data from the present sample and self-rating data from a previous study). CONCLUSIONS: The proxy-rating version of the PRMQ provides a useful measure of everyday memory for use in clinical research and practice.

Adult↗
PubMed2005

Parent-proxy EQ-5D ratings of children with attention-deficit hyperactivity disorder in the US and the UK.

BACKGROUND: The symptoms of attention-deficit hyperactivity disorder (ADHD) are associated with impairment in multiple domains of health-related quality of life (HR-QOL). HR-QOL of children with ADHD has been assessed by relatively long multidimensional questionnaires. A review of the literature found no studies using the brief, well established EuroQoL Five-Dimension Questionnaire (EQ-5D) to estimate the HR-QOL of children with ADHD. The objective of this study was to assess the HR-QOL of children with ADHD using parents' responses to the proxy version of the EQ-5D. METHODS: Participants were recruited in the midwestern US and in the vicinity of London, England. All parents completed three questionnaires: the EQ-5D proxy version; a measure of ADHD symptoms based on Diagnostic and Statistical Manual of Mental Disorders (4th Edition) [DSM-IV] criteria (the Attention-Deficit/Hyperactivity Disorder Rating Scale-IV - Parent Version [ADHD-RS]); and either the Child Health Questionnaire - Parent Form 50 (CHQ-PF50) or the Child Health and Illness Profile - Child Edition (CHIP-CE), which are both generic multidimensional paediatric HR-QOL questionnaires. RESULTS: A total of 126 parents of children with ADHD participated in the study: 43 in the US and 83 in the UK. On the EQ-5D, participants indicated that 78.6% of their children experienced some problems or extreme problems performing usual activities, while 64.8% believed their child demonstrated some or extreme anxiety or depression. The mean EQ-5D index score was 0.75 and the mean visual analogue scale (VAS) score was 73.9. The EQ-5D index and VAS scores were found to be significantly correlated (p < 0.05) with several domains of the CHQ-PF50 (e.g. Mental Health, Self-Esteem, Family Activities, Psychosocial Summary Score) and the CHIP-CE (e.g. Satisfaction, Comfort, Academic Performance, Peer Relations). The EQ-5D scales were also significantly correlated with the ADHD-RS scales (p < 0.001). CONCLUSION: The proxy version of the EQ-5D, completed by parents, was able to detect impairment in children diagnosed with ADHD in the US and the UK. Furthermore, the EQ-5D index and VAS scores demonstrated construct validity among this sample through significant correlations with an ADHD symptom measure and previously validated multidimensional QOL instruments. These results suggest that parent-proxy EQ-5D ratings are feasible and valid for use as part of an overall health outcomes assessment in clinical studies of childhood ADHD.

Adult↗
PubMed2003

Molecular evidence of Munchausen syndrome by proxy.

Many perpetrators of Munchausen syndrome by proxy present bloodstained materials as counterfeit evidence of proxy hemorrhage. Although blood grouping may show that the blood is not the proxy's, DNA typing may specifically identify the blood's source. A mother claimed that she alone had witnessed gastrointestinal bleeding of her son and presented bloodstained towels as evidence. Several clinical investigations had failed to reveal a bleeding source. I compared the DNA types of the bloodstains and the child's buccal cells. The bloodstain and epithelial cells differed at 4 of 8 microsatellite loci and at the amelogenin locus. The blood and buccal cells shared 1 allele at every locus, suggesting that their sources were closely related. The probability that the source of the blood was maternal was 0.9915 (prior probability, 0.5). I recommend DNA matching in suspected cases of Munchausen syndrome by proxy whenever blood is presented as evidence.

DNA↗
PubMed2004

How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.

Adaptation, Psychological↗
PubMed2003

[Similarities and differences between self-rated and proxy-rated health in extreme old age].

Especially in old age, the global well-being of persons is strongly influenced by their health situation. Due to functional limitations, research on the development of persons in extreme old age often uses proxy ratings of health instead of self-ratings common in younger age groups. However, it is not known whether self- and proxy-ratings provide comparable information about the health status of extremely old persons. The current study with 53 centenarians and 53 proxies examines similarities and differences between self and proxy-ratings of health. The results indicate a high degree of similarity in some health ratings, an overestimation of ADL capacities by the centenarians, and that self-ratings to a large degree reflect the current mood levels of individuals. Findings are discussed with respect to the differences in the kind of information used for general health ratings.

Activities of Daily Living↗
PubMed1988

Patient-proxy response comparability on measures of patient health and functional status.

The present study evaluates the response comparability between 361 elderly hip fracture patients admitted from the community to seven Baltimore area hospitals between 1984 and 1986 and interviewer selected proxies on items pertaining to patients' pre-fracture health and functional status. Agreement across items ranges from very poor to good and varies with respect to the health or functional area assessed. Proxies tend to overestimate patient disability relative to the patients themselves, especially with regard to capacity to perform instrumental activities of daily living. Although proxies who report the greatest contact with patients respond most comparably to the patients, when they do disagree, proxies with the greatest patient contact tend to overestimate patient disability. The authors suggest that attention to item construction and phrasing may improve response comparability.

Activities of Daily Living↗