Increased Patient Activation Is Associated with Fewer Emergency Room Visits and Hospitalizations for Pain in Adults with Sickle Cell Disease.

OBJECTIVE: Recurrent vaso-occlusive pain episodes, the most common complication of sickle cell disease (SCD), cause frequent health care utilization. Studies exploring associations between patient activation and acute health care utilization for pain are lacking. We tested the hypothesis that increased activation and self-efficacy are associated with decreased health care utilization for pain in SCD. METHODS: In this cross-sectional study of adults with SCD at a tertiary medical center, we collected demographics, SCD phenotype, Patient Activation Measure levels, and self-efficacy scores using structured questionnaires. We reviewed charts to obtain disease-modifying therapy and acute health care utilization, defined as emergency room visits and hospitalizations, for vaso-occlusive pain episodes. Negative binomial regression analyses were used to test the hypothesis. RESULTS: We surveyed 67 adults with SCD. The median age was 27.0 years, 53.7% were female, and 95.5% were African American. Median health care utilization for pain over one year (range) was 2.0 (0-24). Only one-third of participants (38.8%) were at the highest activation level (median [range] = 3 [1-4]). Two-thirds (65.7%) of participants had high self-efficacy (median [range] = 32.0 [13-45]). Regressions showed significant association between health care utilization and activation (incidence rate ratio [IRR] = 0.663, P = 0.045), self-efficacy (IRR = 0.947, P = 0.038), and male sex (IRR = 0.390, P = 0.003). Two outliers with high activation, self-efficacy, and health care utilization also had addictive behavior. CONCLUSIONS: Many individuals with SCD have suboptimal activation and reduced self-efficacy. Higher activation and self-efficacy were associated with lower health care utilization for pain. Additional studies are needed to evaluate interventions to improve activation and self-efficacy and reduce acute health care utilization for pain.

Technology use and preferences to support clinical practice guideline awareness and adherence in individuals with sickle cell disease.

Objective: Sickle cell disease (SCD) is a chronic condition affecting over 100 000 individuals in the United States, predominantly from vulnerable populations. Clinical practice guidelines, written for providers, have low adherence. This study explored knowledge about guidelines; desire for guidelines; and how technology could support guideline awareness and adherence, examining current technology uses, and user preferences to inform design of a patient-centered guidelines application in a chronic disease. Methods: This cross-sectional mixed-methods study involved semi-structured interviews, surveys, and focus groups of adolescents and adults with SCD. We evaluated interest, preferences, and anticipated benefits or barriers of a patient-centered adaptation of SCD practice guidelines; prospective technology uses for health; and barriers to technology utilization. Results: Forty-seven individuals completed surveys and interviews, and 39 participated in three separate focus groups. Most participants (91%) were unaware of SCD guidelines, but almost all (96%) expressed interest in a guidelines application, identifying benefits (knowledge, activation, individualization, and rewards), and barriers (poor information, low motivation, and resource limitations). Current technology health uses included information access, care coordination, and reminders about health-related actions. Prospective technology uses included informational messaging and timely alerts. Barriers to technology use included lack of interest, lack of utility, and preference for direct communication. Conclusions: This study's findings can inform the design of clinical practice guideline applications, suggesting a promising role for technology to engage patients, facilitate care decisions and actions, and improve outcomes.

"The Questions Shape the Answers": Assessing the Quality of Published Survey Instruments in Health Professions Education Research.

PURPOSE: Surveys are widely used in health professions education (HPE) research, yet little is known about the quality of the instruments employed. Poorly designed survey tools containing unclear or poorly formatted items can be difficult for respondents to interpret and answer, yielding low-quality data. This study assessed the quality of published survey instruments in HPE. METHOD: In 2017, the authors performed an analysis of HPE research articles published in three high-impact journals in 2013. They included articles that employed at least one self-administered survey. They designed a coding rubric addressing five violations of established best practices for survey item design and used it to collect descriptive data on the validity and reliability evidence reported and to assess the quality of available survey items. RESULTS: Thirty-six articles met inclusion criteria and included the instrument for coding, with one article using 2 surveys, yielding 37 unique surveys. Authors reported validity and reliability evidence for 13 (35.1%) and 8 (21.6%) surveys, respectively. Results of the item-quality assessment revealed that a substantial proportion of published survey instruments violated established best practices in the design and visual layout of Likert-type rating items. Overall, 35 (94.6%) of the 37 survey instruments analyzed contained at least one violation of best practices. CONCLUSIONS: The majority of articles failed to report validity and reliability evidence, and a substantial proportion of the survey instruments violated established best practices in survey design. The authors suggest areas of future inquiry and provide several improvement recommendations for HPE researchers, reviewers, and journal editors.

Surveys of Health Professions Trainees: Prevalence, Response Rates, and Predictive Factors to Guide Researchers.

PURPOSE: To establish a baseline overall response rate for surveys of health professions trainees, determine strategies associated with improved response rates, and evaluate for the presence of nonresponse bias. METHOD: The authors performed a comprehensive analysis of all articles published in Academic Medicine, Medical Education, and Advances in Health Sciences Education in 2013, recording response rates. Additionally, they reviewed nonresponse bias analyses and factors suggested in other fields to affect response rate including survey delivery method, prenotification, and incentives. RESULTS: The search yielded 732 total articles; of these, 356 were research articles, and of these, 185 (52.0%) used at least one survey. Of these, 66 articles (35.6%) met inclusion criteria and yielded 73 unique surveys. Of the 73 surveys used, investigators reported a response rate for 63.0% of them; response rates ranged from 26.6% to 100%, mean (standard deviation) 71.3% (19.5%). Investigators reported using incentives for only 16.4% of the 73 surveys. The only survey methodology factor significantly associated with response rate was single- vs. multi-institutional surveys (respectively, 74.6% [21.2%] vs. 62.0% [12.8%], P = .022). Notably, statistical power for all analyses was limited. No articles evaluated for nonresponse bias. CONCLUSIONS: Approximately half of the articles evaluated used a survey as part of their methods. Limited data are available to establish a baseline response rate among health professions trainees and inform researchers which strategies are associated with higher response rates. Journals publishing survey-based health professions education research should improve reporting of response rate, nonresponse bias, and other survey factors.

Epigenetics of drug abuse: predisposition or response.

Drug addiction continues to be a serious medical and social problem. Vulnerability to develop an addiction to drugs is dependent on genetic, environmental, social and biological factors. In particular, the interactions of environmental and genetic factors indicate the significance of epigenetic mechanisms, which have been found to occur in response to illicit drug use or as underlying factors in chronic substance abuse and relapse. Epigenetics is defined as the heritable and possibly reversible modifications in gene expression that do not involve alterations in the DNA sequence. This review discusses the various types of epigenetic modifications and their relevance to drug addiction to elucidate whether epigenetics is a predisposing factor, or a response to, developing an addiction to drugs of abuse.