Rebecca Stallings

The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses

When patients face end-of-life decisions and are unable to speak for themselves, loved ones are often asked to make substituted judgments. Ethicists have argued that this is an important way of respecting patient autonomy [1, 2], but preliminary studies indicate that substituted judgments may not be very accurate [3-11]. This concern has led some observers to question the usefulness of asking for substituted judgments [8, 12]. If the concept of substituted judgment is to remain clinically useful, health care professionals need a better sense of the circumstances under which substituted judgments made by surrogates are accurate or inaccurate. Such data may alert clinicians to instances in which patients are at risk for having their wishes misrepresented and may aid in the design of education campaigns to improve the accuracy of substituted judgments. Little is known about the factors associated with accurate substituted judgments, especially among patients with terminal diagnoses [8, 11]. In a pilot study of 50 general medical patients [13], we found that accuracy was positively associated with discussions between patients and surrogates and negatively associated with religiosity. Building on this experience, we studied 250 terminally ill patients and their legal surrogates and a comparison group of 50 general medical patients and their surrogates. Our objectives were to 1) assess the accuracy of the substituted judgments made by the surrogates; 2) ascertain the beliefs, practices, and clinical and sociodemographic factors associated with accuracy; 3) assess the preferences of patients for life-sustaining treatments; and 4) compare differences in accuracy across diagnoses. Methods Patients Between November 1993 and February 1996, patients were recruited from the outpatient practices of Johns Hopkins Hospital and the Hopkins Bayview Medical Center, Baltimore, Maryland, and Georgetown University Medical Center, Washington, D.C. Eligible patients were older than 17 years of age, spoke English, and had one of the following conditions known to be associated with a less than 50% chance of surviving for 2 years: New York Heart Association class III or IV congestive heart failure with no possibility of transplantation [14], advanced HIV infection according to the Centers for Disease Control and Prevention case definition for AIDS (before the use of protease inhibitors) [15], amyotrophic lateral sclerosis with respiratory compromise [16], unresectable non-small-cell lung cancer [17], or oxygen-dependent chronic obstructive pulmonary disease with dyspnea at rest [18, 19]. Treating physicians were asked to exclude patients whom they thought they were likely to live longer than 2 years and patients who were cognitively incapable of participating. The comparison group comprised general medical patients who were older than 64 years of age, spoke English, and were expected to live longer than 2 years. To have a power of 0.80 to detect a 15% difference between patient preferences and surrogate predictions at = 0.05, we needed 263 patient-surrogate pairs. Rounding up to 300 gave a power of 0.75 to detect a 25% difference in agreement between diagnostic groupings at = 0.05. Surrogates were chosen according to Marylands legal hierarchy of surrogates for incapacitated patients: durable power of attorney, guardian, spouse, adult child, parent, sibling, other relative, or friend [20]. For uniformity, surrogates of patients recruited at Georgetown University Medical Center were also chosen according to the Maryland hierarchy. Attending physicians were contacted 2 weeks before scheduled patient visits. Patients were initially informed of the general nature of the study and asked to supply the phone number of the surrogate who was highest in Marylands legal hierarchy. At the time of the appointment, details of the study were described and informed consent was obtained. Surrogates were interviewed within 48 hours before or after the patient interview. Patients and surrogates were asked not to speak with each other about the interviews until both interviews were completed. Informed consent was obtained from all participants. The study was approved by the institutional review boards of the Johns Hopkins Medical Institutions and Georgetown University Medical Center. Interview Schedule Structured interviews consisted of closed-ended questions about sociodemographic factors, previous discussions about end-of-life decisions, advance directives, and past experiences. Patients were asked about their treatment preferences, and surrogates were asked to predict patient preferences. Sociodemographic information included age, sex, ethnic group, exposure category for HIV infection, level of education, socioeconomic factors, insurance status, and religious beliefs and practices. We elicited preferences for various medical interventions in the setting of three hypothetical clinical scenarios that would render patients unable to make decisions for themselves: permanent coma, coma with a small chance of recovery (the small chance scenario), and severe dementia (Table 1). For each scenario, the patient was asked to report his or her preferences for intensive care, intubation, cardiopulmonary resuscitation, feeding tube placement, nasotracheal suction, surgery, hemodialysis, esophagogastroduodenoscopy, phlebotomy, and chest roentgenography. All scenarios and interventions were described briefly and simply to ensure understanding. For example, the feeding tube question was worded, Would you want to be fed by a feeding tube (that is, a tube put through your nose or through the skin over your stomach)? Table 1. Clinical Scenarios Requests for a limited trial of an intervention were interpreted as yes responses. Patients and surrogates were urged to give their best judgment. Unsure responses were recoded as yes responses because they would be clinically interpreted that way. The interview schedules had been previously developed and tested for reliability [13] and were based on the Medical Directive of Emanuel and Emanuel [21]. Slight modifications were made for our protocol; the revised instruments showed high internal consistency, with Kuder-Richardson statistics of 0.97 for the permanent coma scenario, 0.94 for the small chance scenario, and 0.93 for the severe dementia scenario. The complete set of instruments is available from the authors on request. Surrogate Accuracy in Matching Patient Preferences Scale Scores We constructed a Surrogate Accuracy in Matching Patient Preferences Scale (SAMPPS) for each of the three scenarios (SAMPPS-1 for permanent coma, SAMPPS-2 for small chance, and SAMPPS-3 for severe dementia). This scale assigns a score of 1 when the surrogates prediction correctly matches the patients preference for each scenario-treatment pair. Mismatches are assigned a score of 0. The sum of the correct answers constitutes the SAMPPS score. For each of the three scenarios, a perfect score is 10 and a complete mismatch has a score of 0. Statistical Analysis Categorical variables were analyzed by using the chi-square test or the Fisher exact test. Two-tailed t-tests were used for paired continuous variables. Analysis of variance was used to compare continuous variables across multiple groups. Differences between surrogate and patient demographic characteristics were examined by using the McNemar test for paired comparisons. The McNemar test was also used to assess any pattern in mismatches between patient and surrogate preferences. Differences in patient preferences for treatment according to modality or scenario were assessed by using the Cochran Q test. Although scores have often been reported in similar studies, we do not report them because of concern about the appropriateness of as a test of surrogate accuracy [11, 22], and the paradox of [23]. We presented elsewhere an alternative to chi for measuring surrogate accuracy [24]. Factors Associated with the Accuracy of Substituted Judgments A skewed distribution was found for SAMPPS scores. The Friedman two-way analysis of variance was used to compare SAMPPS scores across scenarios, and the Kruskal-Wallis one-way analysis of variance was used to compare SAMPPS-1 scores across diagnoses. A binary logit model [25] was constructed using the 10 binary items (correct/incorrect) per patient-surrogate pair of the SAMPPS-1 score. Independent variables were screened for association with SAMPPS-1 score by using the Spearman rank correlation and Kruskal-Wallis tests, as appropriate. Variables that did not contribute significantly to the multivariate model were eliminated in a stepwise manner. When diagnostic categories were stratified by age ( 65 years or <65 years), the log odds differed significantly by age group for patients with amyotrophic lateral sclerosis, but no such interaction was found between education and insurance. Model diagnostics to identify influential observations were examined [26], revealing 9 outliers that were subsequently removed from the final model. Thus, the final model reports on only 291 patient-surrogate pairs. The model was validated by using the independent variables found to be significant in the SAMPPS-1 model to predict the SAMPPS-2 and SAMPPS-3 scores. Results Participants Interviews of both patient and surrogate were completed for 75% of pairs that met study inclusion criteria. Of interviews that were not completed, 51% were not completed because of patient refusal; 25% were not completed because of patient refusal to allow surrogate contact; 15% were not completed because of surrogate refusal; and 9% were not completed for other reasons, chiefly our inability to arrange for a surrogate interview within 48 hours of the patient interview. Compared with participants, nonparticipants were older (68 and 60 years of age; P < 0.001), more likely to be female (65% and 39%; P < 0.001), more likely to receive Medicare (24% and 10%; P < 0.001), and more likely to be in the chr

Demographic impact of HIV infection in rural Rakai district, Uganda: Results of a population-based cohort study

ObjectivesTo examine HIV-1-related mortality and demographic impact in a high HIV prevalence rural district of Uganda. DesignOne-year follow-up (1990–1991) in a population-based rural cohort. Setting and participantsAnnual enumeration of all consenting residents of 1945 households in 31 randomly selected community clusters in Rakai District. Subjects provided yearly HIV serological samples, behavioral and health information. Main outcome measureMortality in HIV-infected and uninfected persons. ResultsMortality among HIV-seropositive adults aged ≥15 years of 118.4 per 1000 person-years (PY) was substantially higher than in HIV-seronegative adults [12.4 per 1000 PY; relative risk (RR), 9.5; 95% confidence interval (CD, 6.0–14.9]. Infant mortality among offspring of HIV-infected mothers was almost double that for uninfected women (210 compared with 111 per 1000 live births; RR, 1.9; 95% Cl, 1.0–3.5). Adult HIV-related mortality was associated with HIV prevalence and, in this cohort, with higher education, non-agricultural occupation and residence in roadside trading centers. We estimate that adult HIV prevalence in the district is 13% and adult HIV attributable mortality 52%. For all ages combined, district HIV attributable mortality is 28%. ConclusionHIV is the leading cause of adult death in Rakai. Its effects on mortality are particularly marked in the most economically active sectors. However, the overall crude birth rate in the district (45.7 per 1000 population) remains higher than the crude death rate (28.1 per 1000 population), resulting in continued rapid population growth.

The association of childhood sexual abuse with depressive symptoms during pregnancy, and selected pregnancy outcomes

OBJECTIVES The objectives were: (1) to investigate the association during pregnancy of sexual abuse before the age of 18 on depressive symptomatology in pregnancy, controlling for the presence of negative life events and challenges; and (2) to investigate the association of selected pregnancy outcomes (maternal labor and delivery factors, infant birth weight and gestational age) with sexual abuse before age 18. METHODS Three hundred fifty-seven primiparous women aged 18 years and older were interviewed between 28-32 weeks gestation with reference to current functioning and past history (Objective 1). Medical record information was abstracted after delivery for pregnancy, labor and delivery factors, and pregnancy outcomes (Objective 2). RESULTS Thirty-seven percent of the women reported past sexual abuse. Prevalence was not associated with ethnic background, educational level, or hospital payment source. Previously sexually-abused pregnant women reported significantly higher levels of depressive symptomatology, negative life events, and physical and verbal abuse before and during pregnancy. There were no significant associations found between past sexual abuse and labor or delivery variables or newborn outcomes. CONCLUSIONS Previously sexually-abused pregnant women reported a wider constellation of past and current functioning problems than nonabused women although past sexual abuse was not associated with pregnancy outcome. Prenatal care provides a unique opportunity to evaluate the impact of life history and current life events during pregnancy, and to develop a coordinated intervention plan.

Incidence of HIV-1 infection in a rural region of Uganda

Abstract Objective : To determine the incidence of infection with HIV-1 and the risk factors associated with seroconversion in three geographical strata of a rural Ugandan district. Design : Serological, sociodemographic, and behavioural surveys of everyone aged 13 or more in 21 randomly selected communities at baseline and 20 one year later. Setting : Rural population of Rakai district, south-western Uganda, residing in main road trading centres, secondary trading villages, and agricultural villages. Subjects : In 1989, 1292 adults provided a blood sample and interview data; one year later, 778 survivors (77%) who had been seronegative at baseline provided follow up data. Main outcome measures : Incidence of HIV infection in relation to individual characteristics and risk factors, including place of residence. Results : Incidence of HIV infection in all adults was 2.1/100 person years of observation (SE 0.5 (95% confidence interval 1.1 to 3.1)); in people aged 15-39 the incidence was 3.2/100 person years. Incidence was highest in men and women aged 20-24 (9.2/100 person years (3.9) and 6.8/100 person years (2.9) respectively). Risk factors significantly associated with seroconversion were age 24 and under and two or more sexual partners. Between the surveys the proportion of all respondents reporting high risk behaviour (two or more partners) significantly increased from 8.9% to 12.3%. Conclusions : Despite preventive programmes and substantial knowledge about AIDS the incidence of HIV infection remains high in this rural population. Prevention aimed at vulnerable rural communities is urgently needed to contain the HIV epidemic.

Symptoms of Raynaud’s Phenomenon in an Inner-City African-American Community: Prevalence and Self-Reported Cardiovascular Comorbidity

The objective of this study was to determine the prevalence of symptoms and the morbidity associated with Raynauds phenomenon (RP) among African Americans. A total of 2196 randomly selected residents of an inner-city community, in Baltimore, completed a health-assessment survey. Symptoms of RP consisted of cold sensitivity plus cold-induced white or blue digital color change. One third (n = 703) reported cold sensitivity and 14% (n = 308) reported digital color change; 84 residents with symptoms of RP were identified, yielding an overall prevalence rate of 3.8% (95% confidence interval [CI] 3.0-4.6). RP was associated with poor or fair health status (odds ratio [OR] = 1.82, CI 1.18-2.81), heart disease (OR = 2.32, CI 1.39-3.87), and stroke (OR = 2.20, CI 1.17-4.15), after adjustment for age, gender, and physician-diagnosed arthritis. The prevalence of symptoms of RP in this African-American community is comparable to published reports from other populations. These community-based data suggest that identification of RP among African Americans should raise consideration of possible comorbidity, particularly cardiovascular disease.

Comparison of visual estimates of children's portion sizes under both shared-plate and individual-plate conditions

OBJECTIVE This paper compares the accuracy of visual estimations of childrens food intake in settings where several children eat together off 1 plate vs individual-plate eating scenarios. DESIGN Eight trained observers were tested in their ability to estimate food portions consumed by children enacting common eating scenarios. Foods were categorized by food group and according to their presentation by individual-plate and shared-plate. Observed food weight estimates were compared to actual weights. SUBJECTS/SETTING The 8 observers visually estimated 69 food portions of children eating alone and 26 portions where children were eating from a shared plate. This study was carried out in Sarlahi District, a rural, central lowland region of Nepal. STATISTICAL ANALYSES Pearsons correlation coefficients were calculated to examine associations between estimated and actual weights. A fixed effects model was constructed to compare observers. RESULTS Analyses revealed that observer estimates of food weights under field conditions were well correlated with actual weights for individual-plate (r = 0.89) and for shared-plate (r = 0.84) scenarios. Observers estimated food weights when children ate together on a shared plate less accurately than they did in settings where children ate alone. With the exception of 1 observer, observers did not differ significantly in their ability to estimate food weights. Accuracy of estimations was influenced by food weight with greater error associated with food quantities of less than 70 g. CONCLUSIONS Visual estimation is a relatively accurate, valid method of assessing child food intake under rural field conditions, and the only method to obtain accurate information on dietary intake in regions where shared-plate eating is frequent.

Racial differences in health care utilization among children in foster care

Abstract Health services utilization patterns of foster children in Baltimore City, MD are described and health services utilization is compared between black and white foster children. Utilization data were obtained on a sample of 417 children receiving health service payments through the Maryland Medical Assistance program and data cover one year for all children. Black and white children were found to have similar family, and health status characteristics. The total sample had a mean number of 4.6 outpatient visits during the study year with 16.8% having no health care utilization. White children had significantly more mean visits overall (7.1) than did black children (3.9), significantly higher utilization when examined by provider type or reason for visit, and a significantly higher use of ancillary services. A larger proportion of black children had no utilization during the study period. Possible explanations and policy implications of these results are discussed.

Concurrent partners and the results of the Uganda Rakai project [reply] [letter]

The authors previously published a paper on HIV risk factors in Rakai district Uganda in which they found the population-attributable risk fraction (PARF) associated with multiple sex partners to be substantially higher than the PARF associated with an history of sexually transmitted diseases (STD). C.P. Hudson in a subsequent letter held these findings to suggest that programs which promote behavioral change may be more critical than STD control in reducing the incidence of HIV. While the researchers and authors of these earlier findings support the importance of behavior change in AIDS prevention they herewith argue that it is premature to make policy decisions on the relative value of programs emphasizing behavior modification rather than STD control. STD data in the study was based on the recall of study subjects and not direct serological or physical examination and evidence. Data suggests that previous STD may be underreported more frequently than recent events. Additionally research supports the tendency of women interviewed in the study to underreport their number of casual partners. Underreporting one or both variables will distort or weaken the association noted in the original paper. The authors therefore stress the need to collect more information through a variety of mechanisms before determining the feasibility and effectiveness of implementing different HIV prevention strategies. It must also be remembered that prevention strategies are interlinked. Finally the authors note their interest in the hypothesis that concurrent partnerships may play a greater role in HIV transmission than absolute numbers of partners.