Kristina Simacek

Betwixt and Between The Social Position and Stress Experiences of Graduate Students

Graduate students occupy social positions within institutions of higher education that are rife with role strain and, relative to broader power relations within these institutions, are marginalized. In this study, we inquire how the social positions and concomitant roles of graduate students shape their mental health experiences, investigating potential institutional sources of stress. Our findings suggest that master’s and doctoral students have unique mental health concerns related to their roles and social positions as graduate students. Major institutional sources of stress include role strain, mentor relationships, isolation, and funding.

Communicating laboratory test results for rheumatoid factor: what do patients and physicians want?

Objective This study aimed to explore patient and physician perspectives on current laboratory test reporting practices and to elicit ideas for improvement. Methods Two independent studies were conducted. The first solicited members of an online physician community for opinions on current laboratory test reporting practices and possible improvements. The second addressed the same topic, but solicited patient feedback, and included an evaluation of a mock laboratory test report for the rheumatoid factor blood test. Results Both physicians and patients expressed a desire for patient-friendly information on laboratory reports. Physicians expressed a need for education for patients around false-positive and false-negative results within laboratory reports, while patients sought context around the meaning of results, relevance to other tests, and follow-up steps. Conclusion Physicians and patients see value in enhancing laboratory test reports to improve communication. While reports should include the context that patients value, they should also contain cautionary interpretation emphasized by physicians. Patient consultation on improving laboratory reports may help improve such patient-focused communication and promote greater patient understanding of health information, thereby increasing patient participation in their own health care and improving outcomes. Practice implications Laboratory reports are typically designed by experts. Including patients in laboratory report design may facilitate communication and improve outcomes through better patient engagement.

New approach for analyzing self-reporting of insomnia symptoms reveals a high rate of comorbid insomnia across a wide spectrum of chronic diseases

BACKGROUND Insomnia is increasingly recognized to be comorbid with one or more medical conditions. This study used an online research platform to characterize insomnia across different mental and physical conditions. METHODS A custom cross-sectional survey was fielded online to 31,208 users of the patient community PatientsLikeMe. The survey queried members on National Sleep Foundation-defined insomnia risk (waking up feeling unrefreshed, difficulty falling asleep, waking in the middle of the night, or waking too early). RESULTS Complete results were obtained from 5256 patients with 11 comorbid conditions. Seventy-six percent of US-based respondents were at risk for insomnia. Patients who reported difficulty falling asleep were found to have nearly twice the odds of self-reporting insomnia (odds ratio [OR]: 1.84; 95% confidence interval [CI]: 1.5-2.1) when compared to those who do not have difficulty falling asleep, whereas those who reported waking during the night or waking up unrefreshed were no more likely (OR: 1.025 and 1.032, respectively) to report that they suffered from insomnia than those who did not experience these issues. Although insomnia was self-reported as severe or very severe across most conditions, few respondents had actually been diagnosed with insomnia by a physician. After adjustment for age and gender, there was an independent and strong effect of primary condition severity on insomnia risk, and those with severe epilepsy (0.93), depressive disorders (0.92), and fibromyalgia (0.92) occupied the highest risk probabilities. CONCLUSIONS The high rate of severity and frequency of insomnia across a multitude of mental and physical conditions reveals an opportunity for better disease management through enhanced insomnia awareness.

Patient engagement in type 2 diabetes mellitus research: what patients want

Background As patients are the ultimate stakeholder in their health, their perspectives should be included along with researchers, providers, and funders of research design, execution, and interpretation. Despite the high prevalence of type 2 diabetes mellitus (T2DM), patients are rarely directly included in these decisions. Purpose We sought to determine areas of research most important to patients with T2DM, identify ways through which patients with T2DM want to engage in research, and evaluate online patient research networks as a source for obtaining patient perspectives on research engagement. Patients and methods This study used an online patient community forum (PatientsLikeMe) to host two asynchronous moderated discussions, each with three to four prompted discussion posts. A qualitative summary of themes was derived from the posts. Results Eighty-eight participants with T2DM took part. Participants were mostly white (86%), averaged 58.6 years of age, half were female (50%), and over half (62%) resided in the US. Research priorities included managing T2DM with comorbidities, controlling blood sugar levels, finding a cure, and understanding causes of T2DM. Participants wanted to see direct applications of research to their lives. Clinical research was perceived to have overly restrictive eligibility criteria and to measure outcome sets that do not adequately address patient health concerns. Participants indicated broad interest in partnering in research and a willingness to apply their skills and educational background to specific stages in the research process. Conclusion Patients with T2DM would like researchers to address outcomes that have meaning in patients’ daily lives. Initiatives to involve patients in research should leverage and enable patients to contribute as participants, advisors, or co-investigators, going beyond research topic prioritization to full participation throughout the research process based on their abilities and interest. This study provides support for the use of online patient research network discussions to generate rich qualitative data to engage patients in research.

Using a Positive Deviance Approach to Influence the Culture of Patient Safety Related to Infection Prevention

Abstract Background Health care–associated infections (HAIs) are a socio-technical problem. We evaluated the impact of a social change intervention on health care personnel (HCP), called “positive deviance” (PD), on patient safety culture related to infection prevention among HCP. Methods This observational study was done in 6 medical wards at an 800-bed public academic hospital in the United States. Three of these wards were randomly assigned to receive PD intervention on HCP. After a retrospective 6-month baseline period, PD was implemented over 9 months, followed by 9 months of follow-up. Patient safety culture and social networks among HCP were surveyed at 6, 15, and 24 months. Rates of HAI were measured among patients. Results The measured patient safety culture was steady over time at 69% aggregate percent positive responses in wards with PD vs decline from 79% to 75% in wards without PD (F statistic 10.55; P = .005). Social network maps suggested that nurses, charge nurses, medical assistants, ward managers, and ward clerks play a key role in preventing infections. Fitted time series of monthly HAI rates showed a decrease from 4.8 to 2.8 per 1000 patient-days (95% confidence interval [CI], 2.1 to 3.5) in wards without PD, and 5.0 to 2.1 per 1000 patient-days (95% CI, –0.4 to 4.5) in wards with PD. Conclusions A positive deviance approach appeared to have a significant impact on patient safety culture among HCP who received the intervention. Social network analysis identified HCP who are likely to help disseminate infection prevention information. Systemwide interventions independent of PD resulted in HAI reduction in both intervention and control wards.

The impact of disease-modifying therapy access barriers on multiple sclerosis patients: A mixed methods study. (Preprint)

Background In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes. Objective The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients’ journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers. Methods We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs. Results Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS. Conclusions This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.