The validity of proxy responses on patient-reported outcome measures: Are proxies a reliable alternative to stroke patients' self-report?

PURPOSE: Caregivers, or proxies, often complete patient-reported outcome measures (PROMs) on behalf of patients with stroke. The objective of our study was to assess the validity and responsiveness of proxy-responses compared to patient-responses across multiple domains of health. METHODS: Stroke patients and their proxies were recruited to complete PROMs between 7/2018-11/2019. PROMs included Neuro-QoL cognitive function, PROMIS physical function, satisfaction with social roles, anxiety, fatigue, pain interference, sleep disturbance, Global Health, and PHQ-9. Internal consistency and convergent validity were compared between patient- and proxy-reported measures. Known-groups validity was assessed across levels of stroke disability. Internal responsiveness was evaluated using paired t-tests for a subset of patients who attended rehabilitation following stroke. Analyses were stratified by patients ≤ 3 vs > 3 months from stroke. RESULTS: This cross-sectional study included 200 stroke patients (age 62.2 ± 13.3, 41.5% female) and their proxies (age 56.5 ± 13.9, 70% female, 72% spouses). PROMs had high internal consistency and were significantly correlated for patients and proxies. Patient- and proxy-reported measures worsened with increasing stroke disability. For 34 (17%) patients who attended rehabilitation, patients self-reported improvement on 5 domains whereas proxies reported no improvement. Compared to patient self-reports, validity was worse for proxy-reports on patients ≤ 3 months but better > 3 months from stroke. CONCLUSIONS: Both patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients ≤ 3 months from stroke but better validity for patients > 3 months from stroke. These findings justify the utilization of proxy responses in stroke patients > 3 months from stroke.

Patient-centered care during the last year of life: adaptation and validation of the German PACIC short form for bereaved persons as proxies (PACIC-S9-proxy).

BACKGROUND: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients' medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents' LYOL. METHODS: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent's LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach's alpha. RESULTS: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed ≥5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item" Given a copy of their treatment plan" highest (mean 3.96), whereas "encouragement to get to a specific group or class to cope with the condition" (mean 1.74) was rated lowest. Cronbach's alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett's test for sphericity p < 0.001), with items' factor loadings ranging from 0.46 to 0.82. CONCLUSIONS: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register ( DRKS00011925 ) on 13 June 2017.

Making Medical Decisions for Incapacitated Patients Without Proxies: Part II.

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population.

Caregiving preferences and advance care planning among older adults living with HIV.

With the increase in the US of the number of older adults living with HIV, more research is needed to understand the caregiving and advance care planning needs of this population. This descriptive study examined the relationship between social support and caregiving preferences and advance care planning. Older adults living with HIV were recruited from clinics in Los Angeles, CA and New Orleans, LA to complete cross-sectional surveys (n = 154). Logistic regression analyses were modeled to determine the characteristics associated with 1) preference for formal short-term term care, 2) preference for formal long-term care, 3) having at least one contact for emergency care, 4) having an advance directive or living will, and 5) having a healthcare proxy or agent. The mean age was 56.8 years. The majority of participants indicated a preference for informal support for both short-term (73.4%) and long-term care (66.2%), 13.2% had no one they could call for emergency care, 26.0% had an advance directive/living will, and 30.5% had a healthcare proxy/agent. In adjusted models, greater social support was associated with preference for informal short-term care and with having at least one emergency contact. Findings suggest that older adults living with HIV prefer informal sources of support for their caregiving needs despite having small social networks and individuals with limited social networks are particularly vulnerable due to lack of access to caregivers in sudden or unexpected health situations.

Measuring health-related quality of life of care home residents: comparison of self-report with staff proxy responses.

INTRODUCTION: care home residents are often unable to complete health-related quality of life questionnaires for themselves because of prevalent cognitive impairment. This study compared care home resident and staff proxy responses for two measures, the EQ-5D-5L and HowRU. METHODS: a prospective cohort study recruited residents ≥60 years across 24 care homes who were not receiving short stay, respite or terminal care. Resident and staff proxy EQ-5D-5L and HowRu responses were collected monthly for 3 months. Weighted kappa statistics and intra-class correlation coefficients (ICCs) adjusted for clustering at the care home level were used to measure agreement between resident and proxies for each time point. The effect of staff and resident baseline variables on agreement was considered using a multilevel mixed effect regression model. RESULTS: 117, 109 and 104 matched pairs completed the questionnaires at 1, 2 and 3 months, respectively. When clustering was controlled for, agreement between resident and staff proxy EQ-5D-5L responses was fair for mobility (ICC: 0.29) and slight for all other domains (ICC ≤ 0.20). EQ-5D Index and Quality-Adjusted Life Year scores (proxy scores higher than residents) showed better agreement than EQ-5D-VAS (residents scores higher than proxy). HowRU showed only slight agreement (ICC ≤ 0.20) between residents and proxies. Staff and resident characteristics did not influence level of agreement for either index. DISCUSSION: the levels of agreement for EQ-5D-5L and HowRU raise questions about their validity in this population.

Agreement between self-reports, proxy-reports and the National Patient Register regarding diagnoses of cardiovascular disorders and diabetes mellitus in a population-based sample of 80-year-olds.

BACKGROUND: cognitive impairment is common among older adults, necessitating the use of collateral sources in epidemiological studies involving this age group. The objective of this study was to evaluate agreement between self- and proxy-reports of cardiovascular disorders and diabetes mellitus in a population-based sample of 80-year-olds. Further, both self- and proxy-reports were compared with hospital register data. METHODS: data were obtained from the Gothenburg H70 Birth Cohort Studies in Sweden. The study had a cross-sectional design and information was collected through semi-structured interviews in 2009-2012 from participants born in 1930 (N = 419) and their proxy informants. The National Patient Register provided diagnoses registered during hospital stays. Agreement was measured with Kappa values (K). RESULTS: agreement between self- and proxy-reports was substantial for diabetes mellitus (K = 0.79), atrial fibrillation (K = 0.61), myocardial infarction (K = 0.75), angina pectoris (K = 0.73) and hypertension (K = 0.62), and fair for intermittent claudication (K = 0.38) and heart failure (K = 0.40). Compared to the National Patient Register, a large proportion of those with a hospital discharge diagnosis were also self- and proxy-reported. CONCLUSIONS: proxy informants can be an important source of information, at least for well-defined conditions such as myocardial infarction, angina pectoris and diabetes mellitus.

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT).

BACKGROUND: Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for. We consider the key issues that need to be addressed when adapting an instrument designed to measure social care outcomes, the Adult Social Care Outcomes Tool (ASCOT), into a proxy-report tool. METHODS: Participants took part in either a focus group (35 paid carers in eight focus groups), or a one-to-one interview (eight unpaid carers). All participants were recruited via carer organisations and care providers. Transcripts, field notes and audio data collected during focus groups and interviews were analysed using a thematic framework approach. RESULTS: Participants agreed that any person acting as a proxy would need to be very familiar with the care recipient, as well as their needs and care provision. A number of provisions for proxy respondents were proposed to improve face validity and acceptability of completing a questionnaire by proxy, and to ensure that any potential bias is reduced in the design of the questionnaire. These included: providing two sets of response options for each proxy perspective (the proxy themselves and the proxy view of how they think the care recipient would respond); a comments box to help people explain why they have selected a given response option (especially where these indicate unmet need); and providing clear guidance for the proxy respondent on how they should complete the questionnaire. CONCLUSIONS: This study has shown some of the challenges involved in assessing outcomes by proxy and explored some potential ways these can be mitigated. The findings highlight the benefits of developing and testing proxy measures in a robust way to widen participation in social care research.

Quality of life in older adults following a hip fracture: an empirical comparison of the ICECAP-O and the EQ-5D-3 L instruments.

BACKGROUND: The purpose of this study was to empirically compare the performance of two generic preference based quality of life instruments, EQ-5D-3 L (with a health and physical function focus) and ICECAP-O (with a wellbeing and capability focus), in a population of older Australians following hip fracture. METHODS: Older adults or their family member proxies (in cases of severe cognitive impairment) following surgery to repair a fractured hip were invited to take part in this cross sectional study. Inclusion criteria included an age of 60 years or older, confirmed falls-related hip fracture and those receiving current palliative care or consented to other research studies were excluded. 87 participants completed the ICECAP-O and EQ-5D-3 L instruments between one and three weeks post-surgery. RESULTS: For the hip fracture population, the mean ICECAP-O score was 0.639 (SD 0.206, n = 82) and the mean EQ-5D-3 L utility score was 0.545 (SD 0.251, n = 87). There was a statistically significant positive correlation between the ICECAP-O and EQ-5D-3 L scores (r = 0.529, p = < 0.001). CONCLUSIONS: Study findings indicate significant impairments in quality of life post hip fracture. In multiple regression analyses, age and health-related QoL (measured by the EQ-5D) were significant determinants of ICECAP-O scores, while proxy respondent status, age, and capability-related QoL (measured by the ICECAP-O) were significant determinants of EQ-5D scores. Approaches to measuring and valuing quality of life in this sample, should consider the target domains of the intervention in their choice of instrument. Studies aiming to measure the impact of interventions targeting broader domains of wellbeing and QoL should consider including a broader measure of QoL in conjunction with a HRQoL measure.

The validity of proxy-based data on loneliness in suicide research: a case-control psychological autopsy study in rural China.

BACKGROUND: There is a lack of evidence for the role of loneliness on suicide using psychological autopsy method, and the validity of proxy informants' reports on loneliness is not well established. This study aimed to investigate the validity of proxy respondent reports on loneliness, and the reliability and validity of the University of California Los Angeles Loneliness Scale-6 (ULS-6) as used in psychological autopsy method with rural elderly people in China. METHODS: Two hundred forty-two suicide cases and 242 normal community controls were selected, and the psychological autopsy method was utilized to collect information. Data from proxy respondents of the living controls were compared with data reported by the targets (gold standards). RESULTS: Subject-proxy concordance for ULS-6 was fair (ICC = 0.447) in the living controls. The suicide cases were more likely to have a higher score of ULS-6 than the living controls. Additionally, our data supported that ULS-6 had adequate psychometric properties in both suicide and control groups: factor analyses yielded one-factor component solution; Cronbach's alpha (both > 0.90) demonstrated excellent internal consistency; the Spearman correlation analysis indicated that the ULS-6 score was positively correlated with depression; and negatively correlated with QOL and social support. CONCLUSIONS: Results support proxy-based data on loneliness in research of suicide in older adults in rural China, and the ULS-6 is a psychometrically sound instrument for measuring loneliness in psychological autopsy studies.

Incidence and impact of proxy response in measuring patient experience: secondary analysis of a large postal survey using propensity score matching.

OBJECTIVE: To determine whether use of proxy respondents in a patient experience survey was related to patient characteristics, and to compare patient and proxy responses. DESIGN: Secondary analysis, using propensity score matching, of the NHS adult inpatient survey, a large cross-sectional survey. SETTING: Hospitals (n = 161) providing inpatient services in England in 2011. PARTICIPANTS: The survey received 70 863 responses: 10 661 (15.6%) involved proxy respondents in some way. INTERVENTION: None. MAIN OUTCOME MEASURES: Prevalence of proxy response was explored by patient demographic characteristics. Responses were compared using seven composite domains and one overall rating. Cases involving proxy responses were matched to similar independent responses via propensity score matching and mean scores compared using t-tests. RESULTS: Use of proxy respondents was common, with 15.7% of responses involving a proxy in some way: higher than in other similar collections internationally. Proxy response was more common for some patient groups, such as older people and those from black and minority ethnic groups. Reports made by or with the assistance of proxy respondents were markedly less positive than those from patients completing the survey unaided. This pattern was consistent across all tested variables, although the biggest differences were observed for a subjective 'overall rating' question. CONCLUSIONS: The prevalence of proxy response varied according to patient characteristics, but proxies were consistently less positive than patients responding unaided. Possible explanations include genuine differences in care, differential health outcomes or differences in perceptions. Patient experience surveys should collect information on use of proxy respondents to enable more refined analysis.

Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients.

IMPORTANCE: Misperceptions about prognosis by individuals making decisions for incapacitated critically ill patients (surrogates) are common and often attributed to poor comprehension of medical information. OBJECTIVE: To determine the prevalence of and factors related to physician-surrogate discordance about prognosis in intensive care units (ICUs). DESIGN, SETTING, AND PARTICIPANTS: Mixed-methods study comprising quantitative surveys and qualitative interviews conducted in 4 ICUs at a major US medical center involving surrogate decision makers and physicians caring for patients at high risk of death from January 4, 2005, to July 10, 2009. MAIN OUTCOMES AND MEASURES: Discordance about prognosis, defined as a difference between a physician's and a surrogate's prognostic estimates of at least 20%; misunderstandings by surrogates (defined as any difference between a physician's prognostic estimate and a surrogate's best guess of that estimate); differences in belief (any difference between a surrogate's actual estimate and their best guess of the physician's estimate). RESULTS: Two hundred twenty-nine surrogate decision makers (median age, 47 [interquartile range {IQR}, 35-56] years; 68% women) and 99 physicians were involved in the care of 174 critically ill patients (median age, 60 [IQR, 47-74] years; 44% women). Physician-surrogate discordance about prognosis occurred in 122 of 229 instances (53%; 95% CI, 46.8%-59.7%). In 65 instances (28%), discordance was related to both misunderstandings by surrogates and differences in belief about the patient's prognosis; 38 (17%) were related to misunderstandings by surrogates only; 7 (3%) were related to differences in belief only; and data were missing for 12. Seventy-five patients (43%) died. Surrogates' prognostic estimates were much more accurate than chance alone, but physicians' prognostic estimates were statistically significantly more accurate than surrogates' (C statistic, 0.83 vs 0.74; absolute difference, 0.094; 95% CI, 0.024-0.163; P = .008). Among 71 surrogates interviewed who had beliefs about the prognosis that were more optimistic than that of the physician, the most common reasons for optimism were a need to maintain hope to benefit the patient (n = 34), a belief that the patient had unique strengths unknown to the physician (n = 24), and religious belief (n = 19). CONCLUSIONS AND RELEVANCE: Among critically ill patients, discordant expectations about prognosis were common between patients' physicians and surrogate decision makers and were related to misunderstandings by surrogates about physicians' assessments of patients' prognoses and differences in beliefs about patients' prognoses.

Self- and proxy reports of quality of life among adolescents living in residential youth care compared to adolescents in the general population and mental health services.

BACKGROUND: Child welfare services are aimed at providing care and protection, fostering well-being and prosocial behaviour. Thus, Quality of Life (QoL) should be an important outcome measure in Residential Youth Care (RYC) institutions. However, the dearth of research in this area gives rise to serious concern. The present study is the first large scale, nationwide study assessing QoL among adolescents living in RYC. To provide a reference frame, adolescent self- and primary contact proxy reports were compared to the general population and to adolescent outpatients in Child and Adolescent Mental Health Service (CAMHS). Also, we investigated the association between self-report of QoL in adolescents living in RYC and proxy reports of their primary contacts at the institution. METHODS: All residents between the ages of 12-23 years living in RYC in Norway were the inclusion criteria. Eighty-six RYC institutions (with 601 eligible youths) were included, 201 youths/ parents did not give their consent. Finally, 400 youths aged 12-20 years participated, yielding a response rate of 67%. As a reference frame for comparison, a general population (N = 1444) and an outpatient sample of adolescents in CAMHS (N = 68) were available. We used the Questionnaire for Measuring Health-related Quality of Life in Children and Adolescents (KINDL-R). General Linear Model analyses (ANCOVA) were conducted with five KINDL life domains as dependent variables and group as independent variable. RESULTS: Self- and proxy reports of QoL in adolescents living in RYC revealed a significantly (p < 0.001) poorer QoL compared to the general population on the life domains Physical- and Emotional well-being, Self-esteem, and relationship with Friends. Adolescents evaluated their physical well-being as worse compared to adolescents in CAHMS. Self- and proxy reports in RYC differed significantly on two of five life domains, but correlated low to moderate with each other. CONCLUSIONS: The results in this study raise major concerns about the poor QoL of the adolescents living in RYC, thereby challenging the child welfare system and decision makers to take action to improve the QoL of this group. The use of QoL as outcome measures is highly recommended.

Functional status after critical illness: agreement between patient and proxy assessments.

BACKGROUND: assessment of baseline functional status of older patients during and after intensive care unit (ICU) admission is often hampered by challenges related to the critical illness such as cognitive dysfunction, neuropsychological morbidity and pain. To explore the reliability of assessments by carefully chosen proxies, we designed a discriminating selection of proxies and evaluated agreement between patient and proxy responses by assessing activities of daily living (ADLs) at 1 month post-ICU discharge. METHODS: patients ≥60 years old admitted to the medical ICU were enrolled in a prospective parent cohort studying delirium. Proxies were carefully screened at ICU admission to choose the best available respondent. Follow-up interviews, including instruments for ADLs, were conducted 1 month after ICU discharge. We examined 179 paired patient-proxy follow-up interviews. Kappa statistics assessed inter-observer agreement, and McNemar's exact test assessed response differences. RESULTS: patients averaged 73.3 ± 8.1 years old with 29% having evidence of cognitive impairment. Proxies were most commonly spouses (38%) or children (39%). Overall, there was substantial (κ ≥ 0.6) to excellent agreement (κ ≥ 0.8) between patients and proxies on assessment of all but one basic and one instrumental ADL. CONCLUSION: proxies carefully chosen at ICU admission show high levels of inter-observer agreement with older patients when assessing current functional status at 1 month post-ICU discharge. This motivates further study of proxy assessments that could be used earlier in critical illness to assess premorbid functional status.

A National Asian-Language Smokers' Quitline--United States, 2012-2014.

INTRODUCTION: Until recently, in-language telephone quitline services for smokers who speak Asian languages were available only in California. In 2012, the Centers for Disease Control and Prevention (CDC) funded the national Asian Smokers' Quitline (ASQ) to expand this service to all states. The objective of this study was to examine characteristics of ASQ callers, how they heard about the quitline, and their use of the service. METHODS: Characteristics of callers from August 2012 through July 2014 were examined by using descriptive statistics. We examined demographics, cigarette smoking status, time to first cigarette, how callers heard about the quitline, and service use (receipt of counseling and medication) by using ASQ intake and administrative data. We analyzed these data by language and state. RESULTS: In 2 years, 5,771 callers from 48 states completed intake; 31% were Chinese (Cantonese or Mandarin), 38% were Korean, and 31% were Vietnamese. More than 95% of all callers who used tobacco were current daily cigarette smokers at intake. About 87% of ASQ callers were male, 57% were aged 45 to 64 years, 48% were uninsured, and educational attainment varied. Most callers (54%) were referred by newspapers or magazines. Nearly all eligible callers (99%) received nicotine patches. About 85% of smokers enrolled in counseling; counseled smokers completed an average of 4 sessions. CONCLUSION: ASQ reached Chinese, Korean, and Vietnamese speakers nationwide. Callers were referred by the promotional avenues employed by ASQ, and most received services (medication, counseling, or both). State quitlines and local organizations should consider transferring callers and promoting ASQ to increase access to cessation services.

Recent advances in patient and proxy-reported quality of life research.

BACKGROUND: A number of articles addressing various aspects of health-related quality of life (HRQoL) were published in the Health and Quality of Life Outcomes (HQLO) journal in 2012 and 2013. This review provides a summary of studies describing recent methodological advances and innovations in HRQoL felt to be of relevance to clinicians and researchers. METHODS: Scoping review of original research articles, reviews and short reports published in the HQLO journal in 2012 and 2013. Publications describing methodological advances and innovations in HRQoL were reviewed in detail, summarized and grouped into thematic categories. RESULTS: 358 titles and abstracts were screened initially, and 16 were considered relevant and incorporated in this review. Two studies discussed development and interpretation of HRQoL outcomes; two described pediatric HRQoL measurement; four involved incorporation of HRQoL in economic evaluations; and eight described methodological issues and innovations in HRQoL measures. CONCLUSIONS: Several studies describing important advancements and innovations in HRQoL, such as the development of the PROMIS pediatric proxy-item bank and guidelines for constructing patient-reported outcome (PRO) instruments, were published in the HQLO journal in 2012 and 2013. Proposed future directions for the majority of these studies include extension and further validation of the research across a diverse range of health conditions.

Measuring the quality of life in mild to very severe dementia: testing the inter-rater and intra-rater reliability of the German version of the QUALIDEM.

BACKGROUND: Quality of life (Qol) is an increasingly used outcome measure in dementia research. The QUALIDEM is a dementia-specific and proxy-rated Qol instrument. We aimed to determine the inter-rater and intra-rater reliability in residents with dementia in German nursing homes. METHODS: The QUALIDEM consists of nine subscales that were applied to a sample of 108 people with mild to severe dementia and six consecutive subscales that were applied to a sample of 53 people with very severe dementia. The proxy raters were 49 registered nurses and nursing assistants. Inter-rater and intra-rater reliability scores were calculated on the subscale and item level. RESULTS: None of the QUALIDEM subscales showed strong inter-rater reliability based on the single-measure Intra-Class Correlation Coefficient (ICC) for absolute agreement ≥ 0.70. Based on the average-measure ICC for four raters, eight subscales for people with mild to severe dementia (care relationship, positive affect, negative affect, restless tense behavior, social relations, social isolation, feeling at home and having something to do) and five subscales for very severe dementia (care relationship, negative affect, restless tense behavior, social relations and social isolation) yielded a strong inter-rater agreement (ICC: 0.72-0.86). All of the QUALIDEM subscales, regardless of dementia severity, showed strong intra-rater agreement. The ICC values ranged between 0.70 and 0.79 for people with mild to severe dementia and between 0.75 and 0.87 for people with very severe dementia. CONCLUSIONS: This study demonstrated insufficient inter-rater reliability and sufficient intra-rater reliability for all subscales of both versions of the German QUALIDEM. The degree of inter-rater reliability can be improved by collaborative Qol rating by more than one nurse. The development of a measurement manual with accurate item definitions and a standardized education program for proxy raters is recommended.

The Goals of Patient Care project: implementing a proactive approach to patient-centred decision-making.

BACKGROUND: Patients in the later stages of their lives risk being harmed by futile or unwanted interventions if realistic care goals and patient values are not recognised. Doctors have difficulty discussing and informing patients' healthcare goals. AIMS: To review implementation of a Goals of Patient Care (GOPC) summary in medical inpatients and its applicability in emergency medical response (EMR) situations. METHODS: Single-centre cross-sectional study of adult medical inpatients and adult inpatients requiring EMR at a Victorian general hospital. MEASURES: presence and content of GOPC summary, secondary review of decision-making and discussion documentation, patient characteristics; EMR precipitants and outcomes. RESULTS: GOPC were documented for 82 of 101 patients. One had an existing advance directive, and six had records of a patient-appointed substitute decision-maker. For patients with GOPC, 80 had life-prolonging treatment aims, with a varying degree of treatment limitation in 48. Discussion with patient or substitute decision-maker was evident in 43 cases. GOPC were documented prior to nine of 23 EMR. The EMR triggered a GOPC modification in three instances. CONCLUSIONS: Introduction of a routine GOPC summary encourages consideration of goals of care for most medical inpatients. Few have pre-existing records of their wishes, and there are opportunities for improvement in this regard. Doctors may still have difficulty determining goals of care, and discussion of GOPC with patients and families may not be clearly documented. Most patients requiring EMR do not have prior GOPC review, and the role of the summary in these situations remains unclear.

Patient-reported experiences with hospitals: comparison of proxy and patient scores using propensity-score matching.

OBJECTIVE: The objective of this study was to compare patient-experience scores between patients with a proxy response and without a proxy response, using propensity-score matching to maximize the comparability between these two groups. DESIGN: Cross-sectional survey. SETTING: Hospital inpatient services in Norway. PARTICIPANTS: Patients were randomly selected from each of the 61 hospitals in Norway during spring 2011. Postal questionnaires were mailed to 23 420 patients after their discharge from hospital. INTERVENTION: No intervention. MAIN OUTCOME MEASURES: All of the patient respondents (n = 8744) and the matched cases (n = 734) were compared with patients with a proxy response (n = 734) on 12 patient-experience indicators using t-tests. RESULTS: Compared with patient respondents, patients with a proxy response had poorer health, were older and were more often discharged from the hospital to another health-care institution (P < 0.001). Patients with a proxy response yielded significantly lower patient-experience scores than those without a proxy response for 9 of the 12 indicators. Compared with the matched patient group, patients with a proxy response had significantly lower scores for 3 of the 12 indicators and a significantly higher score for one indicator. Differences in scores between patients with a proxy response and the matched patient sample were small, with the largest difference being 4 on a scale of 0-100. CONCLUSIONS: Patients with a proxy response report somewhat poorer experiences than those without a proxy response; however, proxies represent a different patient group than the patient group as a whole, and the results were very similar after controlling for these differences.

Advance care planning and proxy decision making for patients with advanced Parkinson disease.

OBJECTIVES: To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD). METHODS: Sixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study. RESULTS: Sixty patients with PD (95%) had completed a living will, but only 38% had shared the document with a physician. Among three life-support treatments--cardiopulmonary resuscitation (CPR), ventilator, and feeding tube--47% of patients opted for CPR, 16% for ventilator, and 20% for feeding tube. Forty-two percent of proxies did not know patients' preferences for one or more of the three life-support treatments. Only 28% of proxies reported that patients wanted hospice. Patients who shared advance directives with a physician were significantly less likely to choose CPR and a feeding tube and they were more likely to choose hospice. In a hypothetical end-of-life (EOL) scenario, the majority of proxies chose comfort care as the EOL goal of care (53%) and pain and symptom management only as the course of treatment option (72%); these proxy choices for patients, however, were not associated with patients' preferences for life support. Patients' proxies preferred a form of shared decision making with other family members and physicians. CONCLUSIONS: Advance care planning is effective when patients, families, and healthcare professionals together consider future needs for EOL care decisions. Further efforts are needed by healthcare professionals to provide evidence-based education about care options and facilitate advanced discussion and shared decision making by the patient and families.

Advance directives and outcomes of surrogate decision making before death.

BACKGROUND: Recent discussions about health care reform have raised questions regarding the value of advance directives. METHODS: We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making. RESULTS: Of 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care. CONCLUSIONS: Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.