"Pain is Subjective": A Mixed-Methods Study of Provider Attitudes and Practices Regarding Pain Management in Sickle Cell Disease Across Three Countries.

CONTEXT: Sickle cell disease (SCD), an autosomal recessive blood disorder, affects millions of people worldwide. Approximately 80% of all cases are located in Africa. OBJECTIVES: This cross-national, interdisciplinary, collaborative study investigated provider attitudes about, and practices for, managing (assessing and treating) SCD pain. METHODS: We conducted 111 quantitative surveys and 52 semistructured interviews with health-care providers caring for adults and/or children with SCD in Cameroon, Jamaica, and the U.S. RESULTS: Applying Haywood's scale for assessing SCD provider attitudes, the Jamaica site scored lower on "Negative Attitudes" than the Cameroonian and U.S. sites (P = 0.03 and <0.001, respectively). Providers at the U.S. site scored lower on "Positive Attitudes" than other sites (P < 0.001). "Red Flag" scores at the Cameroon sites were lower than at other sites (P < 0.001). Qualitative results across all three sites describe the current practices for SCD pain management, as well as the challenges surrounding management for health providers, including pain subjectivity, patient-provider and parent-provider relationships, resource availability, perceptions of drug-seeking behavior, and adherence. Providers also spontaneously offered solutions to reported challenges. CONCLUSION: Overall, findings reveal that SCD provider attitudes toward their patients differed across sites, yet at all three sites, treating SCD pain is multidimensional.

Cardiologists' Perspectives on Race-Based Drug Labels and Prescribing Within the Context of Treating Heart Failure.

Purpose: Cardiologists are known to consider patients' race when treating heart failure, but their views on the benefits and harms of this practice are largely undocumented. We set out to explore cardiologists' perspectives on the benefits and harms of race-based drug labels and guidelines. Specifically, we focused on isosorbide dinitrate and hydralazine hydrochloride (sold in a patented form as BiDil), a combination of drugs recommended for the treatment of black patients receiving optimal medical therapy for symptomatic heart failure and reduced ejection fraction. Methods: We conducted 81 semistructured interviews at an American College of Cardiology Annual meeting to assess cardiologists' and cardiology fellows' attitudes toward the use of race in drug prescribing. Investigators reviewed and coded the interviews using inductive qualitative analysis techniques. Results: Many participants believed that race-based drug labels might help doctors prescribe effective medications to patients sooner. More than half of the participants expressed concerns, however, that considering race within the context of treating heart failure could potentially harm patients as well. Harms identified included the likelihood that patients who could benefit from a drug may not receive it because of their race; insufficient understanding about gene-drug-environment interactions; and simplistic applications of race in the clinic. Conclusions: Few participants expressed approval of using race in drug prescribing without recognizing the potential harms, yet most participants stated that they continue to consider race when prescribing isosorbide dinitrate and hydralazine hydrochloride. Within the context of treating heart failure, more open discussions about the benefits and harms of race-based drug labels and prescribing are needed to address cardiologists' concerns.

Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student-athletes.

OBJECTIVE: To describe the perspectives and experiences of athletic trainers, coaches, and student-athletes approximately three years post-implementation of the NCAA sickle cell trait (SCT) screening policy. PARTICIPANTS: Two-hundred and eight student-athletes, 32 athletic trainers, and 43 coaches from 10 NCAA Division I (DI) institutions in North Carolina from January to June 2014. METHODS: Two online surveys were used to assess knowledge, perspectives, and experiences. RESULTS: Athletic staff were more supportive than student-athletes of the need for the policy. Noted challenges included variation in implementation and follow-up for SCT-positive athletes, financial costs to institutions and athletes, and timing of the screening. CONCLUSIONS: More education about SCT is needed for student-athletes and athletic staff in order to help make the implementation more successful. All parties need to be in agreement regarding the importance of knowing which student-athletes have SCT and how that information will be utilized.

Genes, Race, and Causation: US Public Perspectives About Racial Difference.

Concerns have been raised that the increase in popular interest in genetics may herald a new era within which racial inequities are seen as 'natural' or immutable. In the following study, we provide data from a nationally representative survey on how the US population perceives general ability, athleticism, and intellect being determined by race and/or genetics and whether they believe racial health inequities to be primarily the product of genetic or social factors. We find that self-described race is of primary importance in attributing general ability to race, increasing age is a significant factor in attributing athleticism and intellect to genes and race, and education is a significant factor in decreasing such racially and genetically deterministic views . Beliefs about the meaning of race are statistically significantly associated with respect to the perception of athletic abilities and marginally associated with the perception of racial health inequalities being either socially or genetically derived. Race, education, socioeconomic status, and concepts of race were frequently found to be multiplicative in their statistical effects. The persistent acceptance of a genetically and racially deterministic view of athleticism among the White and older population group is discussed in respect to its social impact, as is the high level of agreement that general abilities are determined by race among non-White respondents and those of lower socioeconomic status. We argue that these findings highlight that both biological and non-biological forms of understanding race continue to play a role into the politics of race and social difference within contemporary US society.

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy.

Sickle cell trait (SCT) is usually benign. However, there are some conditions that may lead to SCT-related problems and put athletes with the trait at particular risk. In 2010 the National Collegiate Athletic Association (NCAA) issued a policy that required all Division I (DI) student-athletes to confirm their SCT status or sign a liability waiver to opt out of testing. Athletic trainers and team physicians play key roles in the policy implementation and we examined their perceptions and practices. Between December 2013 and March 2014 we interviewed 13 head athletic trainers and team physicians at NCAA Division I colleges and universities in North Carolina. We used an interview guide with open-ended questions covering knowledge of SCT, historical screening and education practices, current implementation, and policy benefits and challenges. Participants were knowledgeable about SCT and thought the policy was beneficial in providing SCT health information to and for student-athletes. Schools varied in provision of genetic counseling, offering the waiver, SCT tests administered, and other aspects. Challenges included: insufficient guidance from the NCAA; financial considerations; and misunderstanding of the relationships of race and ancestry to SCT risk. Athletic staff found the policy valuable, but felt it needs clarity and standardization.

Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Patient-Reported Outcome Instruments for Physical Symptoms Among Patients Receiving Maintenance Dialysis: A Systematic Review.

BACKGROUND: Patients with end-stage renal disease (ESRD) receiving dialysis have poor health-related quality of life. Physical symptoms are highly prevalent among dialysis-dependent patients and play important roles in health-related quality of life. A range of symptom assessment tools have been used in dialysis-dependent patients, but there has been no previous systematic assessment of the existing symptom measures' content, validity, and reliability. STUDY DESIGN: Systematic review of the literature. SETTINGS & POPULATION: Patients with ESRD on maintenance dialysis therapy. SELECTION CRITERIA FOR STUDIES: Instruments with 3 or more physical symptoms previously used in dialysis-dependent patients and evidence of validity or reliability testing. INTERVENTION: Patient-reported physical symptom assessment instrument. OUTCOMES: Instrument symptom-related content, validity, and reliability. RESULTS: From 3,148 screened abstracts, 89 full-text articles were eligible for review. After article exclusion and further article identification by reference reviews, 58 articles on 23 symptom assessment instruments with documented reliability or validity testing were identified. Of the assessment instruments, 43.5% were generic and 56.5% were ESRD specific. Symptoms most frequently assessed were fatigue, shortness of breath, insomnia, nausea and vomiting, and appetite. Instruments varied widely in respondent time burden, recall period, and symptom attributes. Few instruments considered recall periods less than 2 weeks and few assessed a range of symptom attributes. Psychometric testing was completed for congruent validity (70%), known-group validity (25%), responsiveness (30%), internal consistency (78%), and test-retest reliability (65%). Content validity was assessed in dialysis populations in 57% of the 23 instruments. LIMITATIONS: Consideration of physical symptoms only and exclusion of single symptom-focused instruments. CONCLUSIONS: The number of available instruments focused exclusively on physical symptoms in dialysis patients is limited. Few symptom-containing instruments have short recall periods, assess diverse symptom attributes, and have undergone comprehensive psychometric testing. Improved symptom-focused assessment tools are needed to improve symptom evaluation and symptom responsiveness to intervention among dialysis-dependent patients.

Information-seeking and sharing behavior following genomic testing for diabetes risk.

As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor's office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants' information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company's website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p = 0.0001). Understanding patients' interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician's office. Genetic counselors' expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.

The approach to chronic pelvic pain in the adolescent.

Adolescents present to outpatient and acute care settings commonly for evaluation and treatment of chronic pelvic pain (CPP). Primary care providers, gynecologists, pediatric and general surgeons, emergency department providers, and other specialists should be familiar with both gynecologic and nongynecologic causes of CPP so as to avoid delayed diagnoses and potential adverse sequelae. Treatment may include medications, surgery, physical therapy, trigger-point injections, psychological counseling, and complementary/alternative medicine. Additional challenges arise in caring for this patient population because of issues of confidentiality, embarrassment surrounding the history or examination, and combined parent-child decision making.

Understanding the Person through Narrative.

Mental health nurses need to know their clients at depth, and to comprehend their social contexts in order to provide holistic care. Knowing persons through their stories, narratives they tell, provides contextual detail and person-revealing characteristics that make them individuals. Narratives are an everyday means of communicating experience, and there is a place for storytelling in nearly all cultures. Thus narrative is a culturally congruent way to ascertain and understand experiences. This means the nurse should ask questions such as "How did that come about?" versus why questions. A narrative approach stands in contrast to a yes/no algorithmic process in conversing with clients. Eliciting stories illustrates the social context of events, and implicitly provides answers to questions of feeling and meaning. Here we include background on narrative, insights from narrative research, and clinical wisdom in explaining how narratively understanding the person can improve mental health nursing services. Implications for theory, practice, and research are discussed.

Thriving as becoming resolute in narratives of women surviving childhood maltreatment.

The purpose of this feminist interpretive study was to portray the experience of women thriving after childhood maltreatment (CM) through personal narratives. An interdisciplinary team conducted multiple in-depth interviews of 44 women survivors of CM who identified themselves as successful and doing well. The interviews focused on "what worked" and "what did not" with the aim of exploring aftereffects of CM; strengths and strategies; interactions helpful in overcoming abuse; and related sociopolitical contexts. Narrative analyses revealed a distinct, dynamic process of becoming resolute characterized by six dimensions that were not sequential steps but characteristics, actions, and interactions. This study offers a new understanding of the experience of women gaining solid footing in their lives, the peace of knowing the abuse is over, and power to move in an upward trajectory.

Construct validity of an objective structured clinical examination (OSCE) in psychiatry: associations with the clinical skills examination and other indicators.

OBJECTIVE: The construct validity of checklist and global process scores for an objective structured clinical examination (OSCE) in psychiatry was assessed. Multiple regression analysis was used to predict psychiatry OSCE scores from the clinical skills examination, an obstetrics/gynecology (OB/GYN) OSCE, and the National Board of Medical Examiners (NBME) psychiatry subject examination. METHODS: Archival data from two successive classes of third-year medical students (1999-2000, N=142; 2000-2001, N=144) were aggregated and analyzed. RESULTS: The pattern and magnitude of convergence and discrimination were indicative of adequate construct validity for both the psychiatry checklist scores and the global process score. Clinical skills examination scores for history taking, interpersonal skills, and physical examination were related to psychiatry OSCE scores that reflected the same skill set. Construct validity was fairly higher for the global process rating. CONCLUSION: Evidence of construct validity of a psychiatry OSCE was obtained from multiple measures of performance, including the clinical skills examination. Findings lend support to the continued use of checklist and global process evaluations as part of OSCEs in psychiatry.

The influence of testing context and clinical rotation order on students' OSCE performance.

PURPOSE: To investigate the influence of testing context and rotation order on third-year medical student performance on a common objective structured clinical examination (OSCE) station in both obstetrics-gynecology (ob-gyn) and psychiatry rotations. METHOD: Archival OSCE performance data (in the form of a 25-item binary content checklist) from one class of third-year medical students (n = 141) at Saint Louis University (2002-03) were aggregated and analyzed. RESULTS: Despite the fact that the station was identical in both OSCEs, students were, in general, less likely to inquire about ob-gyn issues on the psychiatry OSCE and less likely to inquire about psychiatric issues on the ob-gyn OSCE, regardless of order of rotation. Order did have a positive effect on some results, such that students were more likely to mention menopause and vaginal dryness on the psychiatry OSCE if they had already had the ob-gyn rotation. CONCLUSION: The testing context may influence student approaches to patients in ways that bias their collection and interpretation of information. OSCE evaluations may better approximate true clinical context and complexity by presenting case scenarios that reflect a broader range of diagnostic possibilities than those limited to the recently completed rotation.

Benign adnexal masses in the adolescent.

Adnexal masses are common in adolescents. Certain conditions will require immediate intervention, including possible torsion, medically refractory tuboovarian abscess, intra-abdominal hemorrhage with hemodynamic instability, or possible ectopic pregnancy. Further evaluation of other masses, including additional imaging or tumor markers may be indicated, especially if masses are complex, solid, or have features characteristic of benign or malignant neoplasms. Otherwise, expectant management and surveillance allow for spontaneous resolution of most masses, especially cystic masses, and prevents unnecessary surgical intervention with its potential risks and sequelae. Laparoscopy can be done in many patients, and conservative, adnexal-sparing surgery should be encouraged when possible. In addition, physicians should be familiar with signs and symptoms of postoperative complications to allow for early diagnosis and intervention.

The T cell surface--how well do we know it?

The overall degree of complexity of the T cell surface has been unclear, constraining our understanding of its biology. Using global gene expression analysis, we show that 111 of 374 genes encoding well-characterized leukocyte surface antigens are expressed by a resting cytotoxic T cell. Unexpectedly, of 97 stringently defined, T cell-specific transcripts with unknown functions that we identify, none encode proteins with the modular architecture characteristic of 80% of leukocyte surface antigens. Only two encode proteins with membrane topologies found exclusively in cell surface molecules. Our analysis indicates that the cell type-specific composition of the resting CD8+ T cell surface is now largely defined, providing an insight into the overall compositional complexity of the mammalian cell surface and a framework for formulating systematic models of T cell surface-dependent processes, such as T cell receptor triggering.