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.

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.

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.

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.

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.