Following young people with perinatal HIV infection from adolescence into adulthood: the protocol for PHACS AMP Up, a prospective cohort study.

INTRODUCTION: The first generation of adolescents born with HIV infection has reached young adulthood due to advances in treatment. It is important to continue follow-up of these individuals to assess their long-term medical, behavioural and mental health and ability to successfully transition to adulthood while coping with a chronic, potentially stigmatising condition. To accomplish this, and to maintain their interest in long-term research participation, we need to accommodate the changing lifestyles and interests of young adult study participants while ensuring valid data collection. We report the protocol for Pediatric HIV/AIDS Cohort Study (PHACS) Adolescent Master Protocol (AMP) Up, a prospective cohort study enrolling young adult participants for long-term follow-up. METHODS AND ANALYSIS: AMP Up is recruiting 850 young men and women 18 years of age and older-600 perinatally HIV-infected and a comparison group of 250 perinatally HIV-exposed, uninfected-at 14 clinical research sites in the USA and Puerto Rico. Recruitment began in April 2014 and is ongoing, with 305 participants currently enrolled. Planned follow-up is ≥6 years. Data are collected with a flexible hybrid of online and in-person methods. Outcomes include: transition to adult clinical care and retention in care; end-organ diseases; malignancies; metabolic complications; sexually transmitted infections; reproductive health; mental health and neurocognitive functioning; adherence to antiretroviral treatment; sexual behaviour and substance use; hearing and language impairments; and employment and educational achievement. ETHICS AND DISSEMINATION: The study received ethical approval from the Harvard T.H. Chan School of Public Health's institutional review board (IRB), and from the IRBs of each clinical research site. All participants provide written informed consent; for cognitively impaired individuals with legally authorised representatives, legal guardian permission and participant assent is obtained. Findings will be disseminated through peer-reviewed journals, conference presentations and participant summaries.

The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.

BACKGROUND: In developing the PatientsLikeMe online platform for patients with Multiple Sclerosis (MS), we required a patient-reported assessment of functional status that was easy to complete and identified disability in domains other than walking. Existing measures of functional status were inadequate, clinician-reported, focused on walking, and burdensome to complete. In response, we developed the Multiple Sclerosis Rating Scale (MSRS). METHODS: We adapted a clinician-rated measure, the Guy's Neurological Disability Scale, to a self-report scale and deployed it to an online community. As part of our validation process we reviewed discussions between patients, conducted patient cognitive debriefing, and made minor improvements to form a revised scale (MSRS-R) before deploying a cross-sectional survey to patients with relapsing-remitting MS (RRMS) on the PatientsLikeMe platform. The survey included MSRS-R and comparator measures: MSIS-29, PDDS, NARCOMS Performance Scales, PRIMUS, and MSWS-12. RESULTS: In total, 816 RRMS patients responded (19% response rate). The MSRS-R exhibited high internal consistency (Cronbach's alpha = .86). The MSRS-R walking item was highly correlated with alternative walking measures (PDDS, ρ = .84; MSWS-12, ρ = .83; NARCOMS mobility question, ρ = .86). MSRS-R correlated well with comparison instruments and differentiated between known groups by PDDS disease stage and relapse burden in the past two years. Factor analysis suggested a single factor accounting for 51.5% of variance. CONCLUSIONS: The MSRS-R is a concise measure of MS-related functional disability, and may have advantages for disease measurement over longer and more burdensome instruments that are restricted to a smaller number of domains or measure quality of life. Studies are underway describing the use of the instrument in contexts outside our online platform such as clinical practice or trials. The MSRS-R is released for use under creative commons license.

Perceived benefits of sharing health data between people with epilepsy on an online platform.

An epilepsy community was developed on PatientsLikeMe.com to share data between patients to improve their outcomes by finding other patients like them. In a 14-day response period, 221 patients with epilepsy (mean age: 40 years, SD: 12, range: 17-72, 66% female) completed a survey about benefits they perceived. Prior to using the site, a third of respondents (30%) did not know anyone else with epilepsy with whom they could talk; of these, 63% now had at least one other patient with whom they could connect. Perceived benefits included: finding another patient experiencing the same symptoms (59%), gaining a better understanding of seizures (58%), and learning more about symptoms or treatments (55%). Number of benefits was associated with number of relationships with other patients, F(4,216)=8.173, P<0.001). Patients with epilepsy reported an array of perceived benefits similar to those reported by populations with other diseases. Controlled sharing of health data may have the potential to improve disease self-management of people with epilepsy.

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double-blind randomized control trials, this study reached the same conclusion as subsequent randomized trials, suggesting that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use.

Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ).

BACKGROUND: Patients with multiple sclerosis (MS) may face barriers, such as treatment fatigue, memory problems, or side effects, that may influence their adherence to medication. OBJECTIVE: The objective of our study was to use an online community to develop a self-report questionnaire to quantify adherence and barriers to achieving adherence, that is specific to MS disease-modifying treatments (DMTs) and predictive of missed doses. METHODS: A review of the scientific literature and analysis of discussions between MS patients on PatientsLikeMe.com were used to generate survey items salient to patients. Cognitive debriefing was used to refine the items. The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) contains 30 questions in three subscales: Barriers, Side Effects, and Coping Strategies. RESULTS: MS patients completed an online survey (response rate: 431 of 1209 invited, 35.7%). Between 16% (14/86) and 51% (51/100) of MS patients missed at least 1 dose of their DMT in the previous 28 days, with significant between-treatment differences. The MS-TAQ Barriers scale was positively correlated with the proportion of doses missed (r = .5), demonstrating a stronger relationship between adherence and perceived barriers than was found with clinical or demographic variables (r ≈ .3). The Coping Strategies subscale was negatively correlated with missed doses (r = -.3), suggesting that use of more coping strategies is associated with higher adherence. CONCLUSIONS: Online communities can provide domains of interest and psychometric data to more rapidly develop and prototype patient-reported outcome instruments. The MS-TAQ offers patients and clinicians a simple method for identifying barriers to adherence, which may then be targeted through interventions.

Sharing health data for better outcomes on PatientsLikeMe.

BACKGROUND: PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: "Given my status, what is the best outcome I can hope to achieve, and how do I get there?" OBJECTIVE: Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. METHODS: Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson's Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). RESULTS: Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site "moderately" or "very helpful." Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. CONCLUSIONS: We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.

Clinicians' assessments of electronic medication safety alerts in ambulatory care.

BACKGROUND: While electronic prescribing (e-prescribing) systems with drug interaction and allergy alerts promise to improve medication safety in ambulatory care, clinicians often override these safety features. We undertook a study of respondents' satisfaction with e-prescribing systems, their perceptions of alerts, and their perceptions of behavior changes resulting from alerts. METHODS: Random sample survey of 300 Massachusetts ambulatory care clinicians who used a commercial e-prescribing system. RESULTS: A total of 184 respondents completed the survey (61%). Respondents indicated that e-prescribing improved the quality of care delivered (78%), prevented medical errors (83%), and enhanced patient satisfaction (71%) and clinician efficiency (75%). In addition, 35% of prescribers said that electronic alerts caused them to modify a potentially dangerous prescription in the last 30 days. They suggested that alerts also led to other changes in clinical care: counseling patients about potential reactions (49% of respondents), looking up information in medical references (44%), and changing the way a patient was monitored (33%). Altogether, 63% of clinicians reported taking action other than discontinuing or modifying an alerted prescription in the previous month in response to alerts. Despite these benefits, fewer than half of respondents were satisfied with drug interaction and allergy alerts (47%). Problems included alerts triggered by discontinued medications (58%), alerts that failed to account for appropriate drug combinations (46%), and excessive volume of alerts (37%). CONCLUSION: Although clinicians were critical of the quality of e-prescribing alerts, alerts may lead to clinically significant modifications in patient management not readily apparent based on "acceptance" rates.

An empirical model to estimate the potential impact of medication safety alerts on patient safety, health care utilization, and cost in ambulatory care.

BACKGROUND: Because ambulatory care clinicians override as many as 91% of drug interaction alerts, the potential benefit of electronic prescribing (e-prescribing) with decision support is uncertain. METHODS: We studied 279 476 alerted prescriptions written by 2321 Massachusetts ambulatory care clinicians using a single commercial e-prescribing system from January 1 through June 30, 2006. An expert panel reviewed a sample of common drug interaction alerts, estimating the likelihood and severity of adverse drug events (ADEs) associated with each alert, the likely injury to the patient, and the health care utilization required to address each ADE. We estimated the cost savings due to e-prescribing by using third-party-payer and publicly available information. RESULTS: Based on the expert panel's estimates, electronic drug alerts likely prevented 402 (interquartile range [IQR], 133-846) ADEs in 2006, including 49 (14-130) potentially serious, 125 (34-307) significant, and 228 (85-409) minor ADEs. Accepted alerts may have prevented a death in 3 (IQR, 2-13) cases, permanent disability in 14 (3-18), and temporary disability in 31 (10-97). Alerts potentially resulted in 39 (IQR, 14-100) fewer hospitalizations, 34 (6-74) fewer emergency department visits, and 267 (105-541) fewer office visits, for a cost savings of 402,619 USD (IQR, 141,012-1,012,386 USD). Based on the panel's estimates, 331 alerts were required to prevent 1 ADE, and a few alerts (10%) likely accounted for 60% of ADEs and 78% of cost savings. CONCLUSIONS: Electronic prescribing alerts in ambulatory care may prevent a substantial number of injuries and reduce health care costs in Massachusetts. Because a few alerts account for most of the benefit, e-prescribing systems should suppress low-value alerts.

Assessing the value of electronic prescribing in ambulatory care: a focus group study.

INTRODUCTION: Drug allergy and interaction alerts are a core function of most electronic prescribing (e-prescribing) systems. To characterize the value of e-prescribing and medication safety alerts, especially in small and medium-size practices, we undertook a hypothesis-generating focus group study of Massachusetts clinicians. We sought to understand the reasons for adoption and use of e-prescribing, as well as clinicians' complaints about and perceived benefits of drug allergy and interaction alerts. METHODS: We recruited 25 Massachusetts clinicians to participate in three focus groups regarding the use and value of e-prescribing and medication safety alerts. The participants included high-volume (>100 electronic scripts per month) physicians, nurse practitioners, and practice assistants in family practice, internal medicine, pediatrics, and subspecialty practices who used a common commercial e-prescribing system. RESULTS: Most clinicians were in small and medium-size group practices. Participants were, on average, 25 years post-medical school graduation (range 8-36), had used e-prescribing for 2.5 years (range 1.0-5.5), and wrote the majority (89%, range 15-100%) of prescriptions electronically. The participants' decision to adopt e-prescribing was driven largely by financial incentives offered by insurers, and was viewed as a step toward implementation of an electronic medical record. Although participants agreed that the system was easy to learn, few anticipated efficiencies were realized until clinicians configured the device to meet their needs. The participants were ambivalent about whether e-prescribing improved their own or overall office efficiency, and--in the absence of payer incentives--few were willing to pay for the systems out-of-pocket. The most valuable aspects of e-prescribing were the ease of changing doses, renewing prescriptions, ensuring legibility, and transmitting prescriptions to in- and out-of-state pharmacies. Participants were dissatisfied with the unreliability of transmitting prescriptions successfully to the pharmacy, and with their inability to merge duplicate patient entries, to create a comprehensive, allprescriber medication list, to write prescriptions for commonly ordered medications and supplies, and to enter allergy information into the system. Participants were critical of the volume of drug allergy and interaction alerts. Many alerts were of trivial clinical significance or were generated by interactions with out-of-date medications. As a result, many clinicians habitually ignored these alerts. Alerts were most helpful to clinicians who were unfamiliar with a particular drug or patient. Although alerts rarely led the clinicians to abort or alter a prescription, alerts did prompt clinicians to counsel patients about medication side effects, to educate themselves about potential interactions, to check physical examination findings, or to order laboratory tests. Despite problems, few clinicians were willing to forego receiving alerts for fear that they would miss a potentially dangerous drug interaction. CONCLUSION: Electronic prescribing is a potential boon to ambulatory medical practice, although its value may be compromised by inappropriate and irrelevant medication safety alerts and by features of the e-prescribing system that prove burdensome to frontline clinicians. While alerts infrequently result in changed or aborted prescriptions, they may trigger a variety of other provider behaviors that help to ensure safe care.

Overrides of medication alerts in ambulatory care.

BACKGROUND: Electronic prescribing systems with decision support may improve patient safety in ambulatory care by offering drug allergy and drug interaction alerts. However, preliminary studies show that clinicians override most of these alerts. METHODS: We performed a retrospective analysis of 233 537 medication safety alerts generated by 2872 clinicians in Massachusetts, New Jersey, and Pennsylvania who used a common electronic prescribing system from January 1, 2006, through September 30, 2006. We used multivariate techniques to examine factors associated with alert acceptance. RESULTS: A total of 6.6% of electronic prescription attempts generated alerts. Clinicians accepted 9.2% of drug interaction alerts and 23.0% of allergy alerts. High-severity interactions accounted for most alerts (61.6%); clinicians accepted high-severity alerts slightly more often than moderate- or low-severity interaction alerts (10.4%, 7.3%, and 7.1%, respectively; P < .001). Clinicians accepted 2.2% to 43.1% of high-severity interaction alerts, depending on the classes of interacting medications. In multivariable analyses, we found no difference in alert acceptance among clinicians of different specialties (P = .16). Clinicians were less likely to accept a drug interaction alert if the patient had previously received the alerted medication (odds ratio, 0.03; 95% confidence interval, 0.03-0.03). CONCLUSION: Clinicians override most medication alerts, suggesting that current medication safety alerts may be inadequate to protect patient safety.

How the Social Web Supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics.

The Internet is not simply being used to search for information about disease and treatment. It is also being used by online disease-focused communities to organize their own experience base and to harness their own talent and insight in service to the cause of achieving better health outcomes. We describe how news of a possible effect of lithium on the course of Amyotrophic Lateral Sclerosis (ALS) was acquired by and diffused through an on-line community and led to participation in a patient-driven observational study of lithium and ALS. Our discussion suggests how the social web drives demand for patient-centered health informatics.

Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data.

BACKGROUND: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient-physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders-the patients-is not well documented or understood. OBJECTIVE: PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. METHODS: Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other's profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. RESULTS: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. CONCLUSIONS: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

A reliable, valid instrument to assess patient knowledge about urinary incontinence and pelvic organ prolapse.

The objective of this study is to develop a reliable, validated questionnaire to assess patient knowledge about urinary incontinence (UI) and pelvic organ prolapse (POP). We designed a written questionnaire comprised of UI and POP scales and administered it to 133 gynecologic and 61 urogynecologic patients. We performed a principal components factor analysis for UI and POP items and assessed construct validity, internal consistency, and stability of each scale. For both scales, mean total urogynecologic group scores exceeded those for gynecologic patients (P values < 0.001), suggesting construct validity. Both scales had excellent internal consistency (Cronbach's alpha > 0.8). Mean test scores were slightly higher upon retest (UI, 0.46, P = 0.046; POP, 0.33, P = 0.126). Pearson's correlation between initial and repeat scores was high for UI (0.675) and POP scales (0.940), indicating questionnaire stability. We developed a reliable, valid instrument for assessing patient knowledge about UI and POP.

Providing high-quality care for limited English proficient patients: the importance of language concordance and interpreter use.

BACKGROUND: Provider-patient language discordance is related to worse quality care for limited English proficient (LEP) patients who speak Spanish. However, little is known about language barriers among LEP Asian-American patients. OBJECTIVE: We examined the effects of language discordance on the degree of health education and the quality of interpersonal care that patients received, and examined its effect on patient satisfaction. We also evaluated how the presence/absence of a clinic interpreter affected these outcomes. DESIGN: Cross-sectional survey, response rate 74%. PARTICIPANTS: A total of 2,746 Chinese and Vietnamese patients receiving care at 11 health centers in 8 cities. MEASUREMENTS: Provider-patient language concordance, health education received, quality of interpersonal care, patient ratings of providers, and the presence/absence of a clinic interpreter. Regression analyses were used to adjust for potential confounding. RESULTS: Patients with language-discordant providers reported receiving less health education (beta = 0.17, p < 0.05) compared to those with language-concordant providers. This effect was mitigated with the use of a clinic interpreter. Patients with language-discordant providers also reported worse interpersonal care (beta = 0.28, p < 0.05), and were more likely to give low ratings to their providers (odds ratio [OR] = 1.61; CI = 0.97-2.67). Using a clinic interpreter did not mitigate these effects and in fact exacerbated disparities in patients' perceptions of their providers. CONCLUSION: Language barriers are associated with less health education, worse interpersonal care, and lower patient satisfaction. Having access to a clinic interpreter can facilitate the transmission of health education. However, in terms of patients' ratings of their providers and the quality of interpersonal care, having an interpreter present does not serve as a substitute for language concordance between patient and provider.

Longitudinal study of posttraumatic stress disorder, depression, and changes in traumatic memories over time in Bosnian refugees.

This longitudinal study examined traumatic memory consistency over a 3-year period among a sample of highly traumatized Bosnian refugees, focusing on demographic factors, types of trauma, and posttraumatic stress disorder (PTSD) and depression. In 1996 and 1999, 376 Bosnian refugees were interviewed about 54 wartime trauma and torture events, and symptoms of PTSD and depression. Reports were compared for both time periods, and changed responses were analyzed for significance. Overall, there was consistency in reporting over time; when change occurred it was in the direction of decreased reports at follow-up. This downward trend was not associated with any particular diagnosis. However, PTSD alone, without comorbid symptoms of depression, was uniquely associated with the group that exhibited an upward trend. This implies that increased reporting is related specifically to the presence of PTSD symptoms, and that PTSD may be distinctly associated with the failed extinction of traumatic memories.

Complementary and alternative medical therapy use among Chinese and Vietnamese Americans: prevalence, associated factors, and effects of patient-clinician communication.

OBJECTIVE: We examined the use of complementary and alternative medical (CAM) therapies among Chinese and Vietnamese Americans who had limited proficiency with the English language and explore the association between patient-clinician discussions about CAM therapy use and patient assessments of quality of care. METHODS: We surveyed Chinese and Vietnamese Americans who visited 11 community health centers in 8 major cities throughout the United States. RESULTS: Of the 4410 patients surveyed, 3258 (74%) returned completed questionnaires. Two thirds of respondents reported they had "ever used" some form of CAM therapy; however, only 7.6% of these patients had discussed their use of CAM therapies with clinicians. Among patients who had used CAM therapies during the week before their most recent visits, clinician-patient discussions about CAM therapy use were associated with better overall patient ratings of quality of care. CONCLUSION: Use of CAM therapies was common among Chinese and Vietnamese Americans who had limited proficiency with the English language. Although discussions about CAM therapy use with clinicians were uncommon, these discussions were associated with better ratings of quality of care.

Interpreter services, language concordance, and health care quality. Experiences of Asian Americans with limited English proficiency.

BACKGROUND: Patients with limited English proficiency (LEP) have more difficulty communicating with health care providers and are less satisfied with their care than others. Both interpreter- and language-concordant clinicians may help overcome these problems but few studies have compared these approaches. OBJECTIVE: To compare self-reported communication and visit ratings for LEP Asian immigrants whose visits involve either a clinic interpreter or a clinician speaking their native language. DESIGN: Cross-sectional survey-response rate 74%. PATIENTS: Two thousand seven hundred and fifteen LEP Chinese and Vietnamese immigrant adults who received care at 11 community-based health centers across the U.S. MEASUREMENTS: Five self-reported communication measures and overall rating of care. RESULTS: Patients who used interpreters were more likely than language-concordant patients to report having questions about their care (30.1% vs 20.9%, P<.001) or about mental health (25.3% vs 18.2%, P=.005) they wanted to ask but did not. They did not differ significantly in their response to 3 other communication measures or their likelihood of rating the health care received as "excellent" or "very good" (51.7% vs 50.9%, P=.8). Patients who rated their interpreters highly ("excellent" or "very good") were more likely to rate the health care they received highly (adjusted odds ratio 4.8, 95% confidence interval, 2.3 to 10.1). CONCLUSIONS: Assessments of communication and health care quality for outpatient visits are similar for LEP Asian immigrants who use interpreters and those whose clinicians speak their language. However, interpreter use may compromise certain aspects of communication. The perceived quality of the interpreter is strongly associated with patients' assessments of quality of care overall.

Linguistic and cultural barriers to care.

CONTEXT: Primarily because of immigration, Asian Americans are one of the fastest growing and most ethnically diverse minority groups in the United States. However, little is known about their perspectives on health care quality. OBJECTIVE: To examine factors contributing to quality of care from the perspective of Chinese- and Vietnamese-American patients with limited English language skills. DESIGN: Qualitative study using focus groups and content analysis to determine domains of quality of care. SETTING: Four community health centers in Massachusetts. PARTICIPANTS: A total of 122 Chinese- and Vietnamese-American patients were interviewed in focus groups by bilingual interviewers using a standardized, translated moderator guide. MAIN OUTCOME MEASURES: Domains of quality of care mentioned by patients in verbatim transcripts. RESULTS: In addition to dimensions of health care quality commonly expressed by Caucasian, English-speaking patients in the United States, Chinese- and Vietnamese-American patients with limited English proficiency wanted to discuss the use of non-Western medical practices with their providers, but encountered significant barriers. They viewed providers' knowledge, inquiry, and nonjudgmental acceptance of traditional Asian medical beliefs and practices as part of quality care. Patients also considered the quality of interpreter services to be very important. They preferred using professional interpreters rather than family members, and preferred gender-concordant translators. Furthermore, they expressed the need for help in navigating health care systems and obtaining support services. CONCLUSIONS: Cultural and linguistically appropriate health care services may lead to improved health care quality for Asian-American patients who have limited English language skills. Important aspects of quality include providers' respect for traditional health beliefs and practices, access to professional interpreters, and assistance in obtaining social services.

Science-based policy for psychosocial interventions in refugee camps: a Cambodian example.

No longer are the high rates of psychiatric morbidity associated with mass violence in refugee populations invisible to the humanitarian assistance community. However, identification of mental health risk and protective factors that can be utilized by policy planners is still lacking. The objective of this report is to provide an analytic approach to determining these factors. A description is provided from the first large-scale epidemiological study of Cambodian refugees confined to the Thailand-Cambodian border in the 1980s and 1990s. The original data from this study are reanalyzed to evaluate the mental health impact of psychosocial factors subject to the influence of camp authorities, such as opportunities in the refugee camp environment and personal behaviors, in addition to trauma. The results suggest the extraordinary capacity of refugees to protect themselves against mental illness despite horrific life experiences. The recommendation emerges for refugee policy makers to create programs that support work, indigenous religious practices, and culture-based altruistic behavior among refugees. As refugee mental health policy receives increasing attention from the international community, it must consist of recommendations and practices based on scientific analysis and empirical evidence.