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.

Importance Hierarchy of Surrogate Medical Decision Making Determinants: A Q-Methodology Study in Middle Eastern and East Asian Men.

BACKGROUND: Factors other than patient's preference may influence surrogate medical decision making in a culture- and viewpoint-dependent way. We explored the importance hierarchy of potential surrogate medical decision making determinants to Middle-Eastern (ME) and East-Asian (EA) men according to their norm-perception (N-viewpoint), preference as patients (P-viewpoint), and preference as surrogate decision-makers (S-viewpoint). METHODS: Each respondent (120 ME, 120 EA) sorted 28 items reflecting potential determinants into a fixed distribution of importance hierarchy according to the three viewpoints. Latent decision making models were explored by by-person factor analysis (Q-methodology). RESULTS: Six models were identified for each ME and EA viewpoint (total 36). Patient's health-related, patient's preference-related, and society's interests-related determinants were strongly embraced in 34, 3, and zero models and strongly discounted in 2, 5, and 21 models, respectively. Patient's religious/spiritual belief was strongly embraced in 6 EA models compared to 2 ME models and strongly discounted in 2 EA models compared to 5 ME models. Further, family-centric and surrogate's interest-related determinants were strongly embraced in 8 EA models compared to 1 ME model. They were also strongly embraced in 5 P-viewpoint compared to 2 S-viewpoint models and strongly discounted in 4 P-viewpoint compared to 11 S-viewpoint models. Despite the overall predominance of patient's health-related determinants and culture- and viewpoint-dependent differences, Q-methodology analysis identified relatively patient's preference-influenced, religious/spiritual beliefs-influenced, emotion-influenced, and familism-influenced models and showed notable overlap in models. CONCLUSIONS: Patient's health was more important than other potential medical surrogate decision making determinants, including patient's preference, for both ME and EA men and in all viewpoints. The relative importance of some determinants was culture- and viewpoint- dependent and allowed description of different albeit overlapping models.

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.

Bundled Consent in US Intensive Care Units.

BACKGROUND: Bundled consent, the practice of obtaining anticipatory consent for a predefined set of intensive care unit procedures, increases the rate of informed consent conversations and incorporation of patients' wishes into medical decision-making without sacrificing patients' or surrogates' understanding. However, the adoption rate for this practice in academic and nonacademic centers in the United States is unknown. OBJECTIVE: To determine the national prevalence of use of bundled consent in adult intensive care units and opinions related to bundled consent. METHODS: A random sample of US hospitals with medical/surgical intensive care units was selected from the AHA [American Hospital Association] Guide. One intensive care unit provider (bedside nurse, nurse manager, or physician) from each hospital was asked to self-reportuse of per-procedure consent versus bundled consent, consent rate for intensive care unit procedures, and opinions about bundled consent. RESULTS: Of the 238 hospitals contacted, respondents from 100 (42%) completed the survey; 94% of respondents were nurses. The prevalence of bundled consent use was 15% (95% CI, 9%-24%). Respondents using per-procedure consent were more likely than those using bundled consent to self-report performing invasive procedures without consent. Users of bundled consent unanimously recommended the practice, and 49% of respondents using per-procedure consent reported interest in implementing bundled consent. RESULTS: Bundled consent use is uncommon in academic and nonacademic intensive care units, most likely because of conflicting evidence about the effect on patients and surrogate decision makers. Future work is needed to determine if patients, family members, and providers prefer bundled consent over per-procedure consent.

Advance Care Planning: Social Isolation Matters.

BACKGROUND: Social isolation is a risk factor for poor health that influences the well-being older adults. OBJECTIVE: We compare advance care planning (ACP) engagement of older adults who were severely socially isolated, socially isolated, and not socially isolated. DESIGN: Cross-sectional analysis of the 2012 National Health and Aging Trends Study (NHATS). SETTING: United States of America. PARTICIPANTS: A total of 2015 older adults (aged ≥65 years) randomly selected from a representative sample of community-dwelling Medicare beneficiaries to participate in an ACP module as part of an annual in-person interview. MEASUREMENTS: We classified participants in three groups: severely socially isolated, socially isolated, or not socially isolated. ACP refers to three (yes/no) questions regarding whether a participant had a: (1) prior discussion about care preferences in the case of serious illness (EOL Discussion); (2) durable power of attorney (DPOA); and (3) advance directive (AD). We performed logistic regression analyses to examine the association between social isolation and ACP. RESULTS: Approximately 23% of older adults were either severely socially isolated or socially isolated. Older adults who experienced social isolation were less likely to engage in ACP than those who were not socially isolated. In adjusted analysis, older adults who were socially isolated had lower odds of having an EOL discussion (adjusted odds ratio [AOR] = 0.65; 95% confidence interval [CI] = 0.49-0.87) or having a DPOA (AOR = 0.71; 95% CI = 0.53-0.96) compared to those who were not socially isolated. CONCLUSION: Social isolation is associated with lower engagement in ACP. Clinicians should identify older adults who are at risk for or experience social isolation as they may benefit from targeted ACP efforts. J Am Geriatr Soc 68:841-846, 2020.

Concordance in advance care preferences among high-risk surgical patients and surrogate health care decision makers in the perioperative setting.

BACKGROUND: Earlier studies have demonstrated poor concordance between patients' advance care preferences and those endorsed by their surrogate health care decision makers in a medical setting. This study aimed to determine concordance in the perioperative setting among high-risk patients and to identify areas for improvement. METHODS: This was a prospective cohort study set in a preoperative clinic for high-risk patients. Patients (>55 y) and their surrogates (dyads) were eligible for participation. Dyads were surveyed on the patient's desire for advance care preferences (cardiopulmonary resuscitation, mechanical ventilation, hemodialysis, artificial nutrition) and tolerance for physical disability, cognitive disability, and chronic pain. Concordance was defined as the surrogate correctly predicting patient preferences. Patients and surrogates were resurveyed for concordance 30 to 60 d after the index procedure. RESULTS: A total of 100 dyads (200 subjects) completed the survey. Median patient age was 68 y. Most patients were white (87%) and had an American Society of Anesthesiologists score of III (88%). The majority of dyads (59%) reported prior conversations about advance care preferences. Concordance specifically for cardiopulmonary resuscitation was 84%. In all other domains, <60% of dyads achieved concordance. Prior conversations regarding advance care preferences did not improve concordance in univariable or multivariable analysis. In postoperative surveys, substantial improvement was found in all domains except mechanical ventilation and cardiopulmonary resuscitation. CONCLUSION: In all domains except cardiopulmonary resuscitation, concordance was <60% in the preoperative setting and was not improved among dyads who reported prior conversations regarding advance care preferences. Discordance may limit patient autonomy by prolonging undesired interventions or terminating desired interventions prematurely.

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.

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.

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.

Surgery without a surrogate: the low prevalence of healthcare power of attorney documents among preoperative patients.

BACKGROUND: There has been little published research regarding the implementation of healthcare power of attorney (HCPOA) documents prior to elective surgery. OBJECTIVES: This study aims to determine the prevalence of HCPOA documents incorporated into the electronic medical records (EMR) of patients undergoing elective surgery at four healthcare institutions. A secondary aim is to examine for correlations between HCPOA document implementation and demographic and preoperative clinical predictors. METHODS: A retrospective chart review was performed in 2012 on 500 consecutive adult patients undergoing elective surgery that required general anesthesia at four medical centers. A descriptive analysis and multivariate logistic regression analysis were performed to examine for associations between HCPOA implementation and hospital site, age, gender, ASA score, marital status, body mass index, insurance type, and zip code. RESULTS: Of 1723 charts reviewed, only 382 had a HCPOA document implemented within the EMR at the time of surgery with significant variance between hospital sites. Female sex, a widowed marital status, and an ASA score greater than 2 were significantly associated with having a HCPOA implemented in the EMR, while BMI, insurance type, and socioeconomic status based on zip code did not significantly correlate with the rate of HCPOA documentation. CONCLUSIONS: Less than a quarter (22.2%) of patients undergoing elective surgery requiring general anesthesia had a HCPOA document appropriately identified despite the known morbidity and mortality risks. The mere presence of EMR systems, palliative care consultation teams, and preoperative care teams are likely insufficient in ensuring appropriate surrogate documentation prior to elective surgery.

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.

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.

Feasibility of using the Fitbit® Charge HR in validating self-reported exercise diaries in a community setting in patients with heart failure.

BACKGROUND: Use of wrist-worn activity monitors has increased over the past few years; however, the use of the Fitbit® Charge HR (FCHR) in a community setting in patients with heart failure has not been tested. PURPOSE: The purpose of the study was to assess the feasibility, practicality and acceptability of utilizing the FCHR to validate self-reported exercise diaries and monitor exercise in community dwelling patients with heart failure. METHODS: Thirty heart failure patients (12 females and 18 males) aged 64.7 ± 11.5 years were provided with a FCHR. Participants were provided with an exercise routine and for eight weeks, recorded their exercise sessions in self-reported exercise diaries and used the FCHR to record those exercise sessions. RESULTS: Exercise data from the self-reported exercise diaries were validated with data from the FCHR. Participants' perception and acceptance of using the FCHR was positive. Validation of exercise and physical activity interventions using the FCHR appears feasible and acceptable in patients with heart failure. CONCLUSION: Wrist-worn activity monitors can be useful for objective measurement of exercise adherence and monitoring of physical activity in patients with heart failure in a community setting.

Representation in the Care Planning Process for Nursing Home Residents With Dementia.

OBJECTIVES: Federally mandated assessments of nursing home (NH) residents drive individualized care planning. Residents with cognitive impairment may not be able to meaningfully communicate their care needs and preferences during this process-a gap that may be partially addressed by involving surrogates. We describe the prevalence of family participation in the care planning process for long-stay NH residents with varying degrees of cognitive impairment. DESIGN: Retrospective study using administrative data made available as part of an ongoing pragmatic cluster randomized controlled trial. SETTING: A total of 292 NHs from 1 large for-profit NH system. PARTICIPANTS: Long-stay NH residents in 2016. MEASUREMENTS: We identified all care planning assessments conducted in 2016 for long-stay NH residents. Cognitive functioning was defined using the Cognitive Function Scale. The Minimum Data Set was used to determine whether a resident, family member, and/or legal guardian participated in the assessment process. Certification and Survey Provider Enhance Reporting system data was used to identify facility-level correlates of family participation. Bivariate and multivariable hierarchical regression results are presented. RESULTS: The analytic sample included 18,552 long-stay NH residents. Family member/representative participation varied by degree of resident cognitive impairment; 8% of residents with no cognitive impairment had family or representative participation in care planning during 2016, compared with 26% of residents with severe impairment. NHs with more social workers had greater family participation in care planning. Available NH characteristics do not explain most of the variation in family participation between NHs (residual intraclass correlation = .57). CONCLUSIONS: Only a minority of family members and surrogates participate in NH care planning, even for residents with severe cognitive impairment. The association between social work staffing and participation suggests family involvement may be a measure of quality improvement capacity. Our findings suggest a lack of voice for a vulnerable population that may have implications on the quality of care received at the end of life.

[Relevance of Living Wills During Post-Resuscitation Care]. / Stellenwert der Patientenverfügung in der Postreanimationsbehandlung.

Background There is hardly any evidence about the influence of living wills on acute life-threatening disease like out-of-hospital cardiac-arrest (OHCA). We therefore initiated this study to quantify the percentage of victims of OHCA who's living wills are available during post-resuscitation care. Methods All victims of OHCA who were admitted to our hospital between January 1st 2008 and July 31th 2016 were identified by analysis of our central admission register. Data from individual patients were collected from the patient's health records and anonymously stored on a central database. Results Altogether, there were 343 victims of OHCA admitted to our hospital between January 1st 2008 and July 31th 2016, including 16 patients (4.7 %) with living wills and 18 patients (5.2 %) with legal health care proxy. Survival rates were 31.2 % in patients with living wills, 27.8 % in patients with legal health care proxy and 33.3 % in patients without such a document. Conclusion In this study, the percentage of victims of OHCA with available living wills during post-resuscitation care was low. The presentation of living wills or legal health care proxies during post-resuscitation care of victims from OHCA was not equivalent to the patient`s death. Most often, discussion with relatives led to the decision to withdraw further therapy.

[Analysis of prevalence of self-reported hearing loss and associated factors: primary versus proxy informant]. / Análise da prevalência de perda auditiva autodeclarada e fatores associados: informante primário versus proxy.

The objective was to evaluate differences between prevalence rates for self-reported hearing loss and associated factors, obtained from responses by primary and proxy informants in a Population-Based Study on Human Communication Disorders (DCH-POP in Portuguese). This was a study on epidemiological methods using data from a cross-sectional household survey with a sample of 1,253 individuals from Southern Brazil. To verify differences between prevalence rates comparing primary informants and proxy informants, we used the chi-square or Fisher's exact test for categorical variables and Mann-Whitney for continuous variables. The log-binomial model was adjusted for hearing loss as the dependent variable, considering three datasets: the entire sample, only primary informants, and only proxy informants, estimating association by prevalence ratios. In the final models, only the independent variables age and dizziness were associated with hearing loss, independently of the dataset that was used. Proxy informants generally underestimated the prevalence rates for the target outcomes, when compared to primary informants.

"RéaNet", the Internet utilization among surrogates of critically ill patients with sepsis.

CONTEXT: Health-related Internet utilization is common but its use by proxies of critically ill patients is unknown. Our objective was to describe the prevalence and the Internet utilization characteristics among surrogates of critically ill septic patients. We conducted a prospective observational study in French ICUs. Three survey instruments were used to describe ICU organization regarding information delivery, patients and surrogates characteristics. RESULTS: 169 surrogates of 146 septic patients hospitalized in 19 ICUs were included. One sixth of ICUs (n = 3, 16%) had their own website. Majority of patients were males (n = 100, 68%), aged 64±1 years old, with a SAPS2 score at 53±17 and required vasopressors (n = 117, 83%), mechanical ventilation (n = 116, 82%). More than one quarter required renal replacement therapy (n = 36, 26%). Majority of surrogates were female, in their fifties. Only one in five knew the word sepsis (n = 27, 16%). Majority of proxies internet users (n = 77; 55%) search on the internet about sepsis. The main motivation was curiosity. Majority of surrogates found the information online reliable, suitable for request and concordant. Prior use of health-related Internet (OR = 20.7 [4.30-100.1]), the presence of a nursing staff during family-physician meetings (OR = 3.33 [1.17-9.53]), a younger patient age (OR = 1.32 [1.01-1.72]) and renal replacement therapy requirement (OR = 2.58 [1.06-6.26]) were associated with health-related Internet use. Neither satisfaction with medical care or information provision, neither presence of anxiety-depression symptoms, were associated with health-related Internet use. Majority of surrogates (N = 76 (52%)) would have like receiving a list of selected websites on sepsis. CONCLUSIONS: Majority of proxies of critically ill patients with sepsis use Internet to learn more about sepsis. Internet utilization is independent of satisfaction with global ICU care, perceived quality of information delivery by doctors or the existence of anxiety-depression symptoms during ICU stay. The delivery of a list of recommended web sites on sepsis would have been appreciated.