Task Force Report Research Articles

Standards for the Reporting of Genetic Counseling Interventions in Research and Other Studies (GCIRS): an NSGC Task Force Report

As the demand for evidence to support the value of genetic counseling increases, it is critical that reporting of genetic counseling interventions in research and other types of studies (e.g. process improvement or service evaluation studies) adopt greater rigor. As in other areas of healthcare, the appraisal, synthesis, and translation of research findings into genetic counseling practice are likely to be improved if clear specifications of genetic counseling interventions are reported when studies involving genetic counseling are published. To help improve reporting practices, the National Society of Genetic Counselors (NSGC) convened a task force in 2015 to develop consensus standards for the reporting of genetic counseling interventions. Following review by the NSGC Board of Directors, the NSGC Practice Guidelines Committee and the editorial board of the Journal of Genetic Counseling, 23 items across 8 domains were proposed as standards for the reporting of genetic counseling interventions in the published literature (GCIRS: Genetic Counseling Intervention Reporting Standards). The authors recommend adoption of these standards by authors and journals when reporting studies involving genetic counseling interventions.

Polycystic ovary syndrome in adolescent girls.

Polycystic ovary syndrome (PCOS) is a common heterogeneous disorder that appears to have its origins during the peripubertal years. The diagnostic conundrum is that the typical clinical features, irregular menses and acne, occur during normal female puberty. Understanding the physiologic origins and molecular basis of the dysregulated hypothalamic-pituitary-gonadal axis in PCOS is fundamental to interrupting the distinctive vicious cycle of hyperandrogenism and chronic anovulation. Newer ultrasound technology with better spatial resolution has generated controversy regarding the optimal imaging criteria to define polycystic ovary morphology. Using such equipment, the Androgen Excess PCOS Society Task Force Report recommends a threshold of at least 25 follicles per ovary as the definition of polycystic ovary morphology. The implementation and results of genome-wide association studies has opened a new window into the pathogenesis of PCOS. Recent genome-wide association studies have identified several loci near genes involved in gonadotropin secretion, ovarian function, and metabolism. Despite the impediments posed by phenotypic and genetic heterogeneity among women with PCOS, investigation into one locus, the DENND1A gene, is providing insight into the ovarian steroidogenesis. Anti-Mullerian hormone (AMH) has long been recognized to play a major role in the ovarian dysfunction. Recent animal data implicate AMH in the neuroendocrine dysregulation by demonstrating AMH-stimulated increased gonadotropin releasing hormone and luteinizing hormone secretion. PCOS is a common complex multifaceted disorder associated with genetic and environmental influences affecting steroidogenesis, steroid metabolism, neuroendocrine function, insulin sensitivity, pancreatic β cell function, and alternative adaptations to energy excess. Current research into the genetics and pathophysiology is reviewed. The difficulties inherent in diagnosing PCOS in adolescent girls are discussed.

Mapping to Estimate Health-State Utility from Non-Preference-Based Outcome Measures: An ISPOR Good Practices for Outcomes Research Task Force Report.

Economic evaluation conducted in terms of cost per quality-adjusted life-year (QALY) provides information that decision makers find useful in many parts of the world. Ideally, clinical studies designed to assess the effectiveness of health technologies would include outcome measures that are directly linked to health utility to calculate QALYs. Often this does not happen, and even when it does, clinical studies may be insufficient for a cost-utility assessment. Mapping can solve this problem. It uses an additional data set to estimate the relationship between outcomes measured in clinical studies and health utility. This bridges the evidence gap between available evidence on the effect of a health technology in one metric and the requirement for decision makers to express it in a different one (QALYs). In 2014, ISPOR established a Good Practices for Outcome Research Task Force for mapping studies. This task force report provides recommendations to analysts undertaking mapping studies, those that use the results in cost-utility analysis, and those that need to critically review such studies. The recommendations cover all areas of mapping practice: the selection of data sets for the mapping estimation, model selection and performance assessment, reporting standards, and the use of results including the appropriate reflection of variability and uncertainty. This report is unique because it takes an international perspective, is comprehensive in its coverage of the aspects of mapping practice, and reflects the current state of the art.

The International Society for Bipolar Disorders Task Force report on pediatric bipolar disorder: Knowledge to date and directions for future research

The International Society for Bipolar Disorders Task Force report on pediatric bipolar disorder: Knowledge to date and directions for future research

Field views parity task force report as critical first step, urges more work

Field views parity task force report as critical first step, urges more work

Panel: Career Technical Education for the Future - Career Tech Education: A Union View of the CCC Board’s Task Force Report

Panel: Career Technical Education for the Future - Career Tech Education: A Union View of the CCC Board’s Task Force Report

American Association of Colleges of Pharmacy 2016 Council of Faculties Business Meeting, Anaheim, July 25, 2016

Call to Order Chair Todd Sorensen (University of Minnesota) called the meeting to order at 1:38 pm in the Marquis Ballroom, Marriott-Anaheim, Anaheim, CA, on Monday, July 25,2016. The Chair introduced the other members of the COF board. Preliminary Quorum Committee Report Quorum committee member Matthew Dintzner (Western New England University) reported that 51 member institutions were represented, constituting a quorum. Report of the Chair Chair Sorensen shared his reflections on the work of the COF over the past year. Chair Sorensen recognized the work of the special COD/COF Taskforce on Accelerating Change. The committee worked fast to develop the report and heavily influenced AACP's strategic plan, particularly strategic priority 3. A new group will be formed called Accelerating Change and Transformation Team (ACT2) that will work closely with the AACP Board of Directors and AACP Staff on identifying and leading Accelerating Change Campaigns. Old Business Chair Sorensen discussed that the work that began in 2014 to recognize Distinguished Teaching Scholars has finally come to fruition and at the 2016 Annual Meeting first 4 scholars were recognized at the Opening General Session. The Chair recognized and thanked Robin Zavod (Midwestern-Chicago) and the 2014 Faculty Affairs Committee for their work on this initiative. Report of the Secretary Margarita DiVall (Northeastern University) reported that the minutes of the 2015 COF Annual Business Meeting held in National Harbor, MD are available via download from the COF webpage under governance on the AACP website as well as through the Pathable app. Other reports available in the same places include the Chair report with embedded committee reports and The Accelerating Change Taskforce Report. After the quorum committee confirmed that a quorum had been met, the minutes were received and approved. Report on Board of Directors' Activities from COF Immediate Past Chair Past Chair Scott (Purdue) reported on the Board of Directors Activities: * The Board approved membership requests from 3 schools that received pre-candidate status at the June meeting of the ACPE board of directors--the House affirmed Associate Institutional Membership status for Highpoint, Larkin, and Ketchum. * Council leaders discussed the first opportunity to engage AACP members in a transformational change project affecting both education and practice. * The Council of Sections has released a toolkit and other resources to facilitate discussions and policy-setting related to the management of issues associated with the use of medical marijuana; these will be disseminated in August via the AACP elert. * The Board had a lengthy conversation about the proposed Cooperative Admissions Guidelines, including the three provisions that seem the most controversial ** March 1st deadline for students to release all but one admission offer ** The initial $200 hold deposit ** The lack of enforcement of the guidelines The Board recognized that there is a need to listen to all sides of this issue and will take final action on the guidelines during the November meeting. Steven Scott encouraged faculty to voice their perspectives on the Cooperative Admission Guidelines during the open forum on Tuesday. * The Board reviewed the strategic recommendations from the 2015-16 standing committees which are posted on the House of Delegates Annual Meeting resource page and will be published later this year in AJPE; among the work initiated this year are the draft set of Entrustable Professional Activities and the pilot of a new membership affinity group model the community of practice for those engaged in interprofessional education and practice development. More information about joining this IPE community will be sent to all members after the annual meeting. …

Economic Evaluations of Multicomponent Disease Management Programs with Markov Models: A Systematic Review.

Disease management programs (DMPs) for chronic diseases are being increasingly implemented worldwide. To present a systematic overview of the economic effects of DMPs with Markov models. The quality of the models is assessed, the method by which the DMP intervention is incorporated into the model is examined, and the differences in the structure and data used in the models are considered. A literature search was conducted; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement was followed to ensure systematic selection of the articles. Study characteristics e.g. results, the intensity of the DMP and usual care, model design, time horizon, discount rates, utility measures, and cost-of-illness were extracted from the reviewed studies. Model quality was assessed by two researchers with two different appraisals: one proposed by Philips et al. (Good practice guidelines for decision-analytic modelling in health technology assessment: a review and consolidation of quality asessment. Pharmacoeconomics 2006;24:355-71) and the other proposed by Caro et al. (Questionnaire to assess relevance and credibility of modeling studies for informing health care decision making: an ISPOR-AMCP-NPC Good Practice Task Force report. Value Health 2014;17:174-82). A total of 16 studies (9 on chronic heart disease, 2 on asthma, and 5 on diabetes) met the inclusion criteria. Five studies reported cost savings and 11 studies reported additional costs. In the quality, the overall score of the models ranged from 39% to 65%, it ranged from 34% to 52%. Eleven models integrated effectiveness derived from a clinical trial or a meta-analysis of complete DMPs and only five models combined intervention effects from different sources into a DMP. The main limitations of the models are bad reporting practice and the variation in the selection of input parameters. Eleven of the 14 studies reported cost-effectiveness results of less than $30,000 per quality-adjusted life-year and the remaining two studies less than $30,000 per life-year gained. Nevertheless, if the reporting and selection of data problems are addressed, then Markov models should provide more reliable information for decision makers, because understanding under what circumstances a DMP is cost-effective is an important determinant of efficient resource allocation.

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE.

SummaryThe management and needs of people with intellectual disability (ID) and epilepsy are well evidenced; less so, the comorbidity of behavioral disorder in this population. “Behavioral disorder” is defined as behaviors that are difficult or disruptive, including stereotypes, difficult or disruptive behavior, aggressive behavior toward other people, behaviors that lead to injury to self or others, and destruction of property. These have an important link to emotional disturbance. This report, produced by the Intellectual Disability Task Force of the Neuropsychiatric Commission of the ILAE, aims to provide a brief review of some key areas of concern regarding behavioral disorder among this population and proposes a range of research and clinical practice recommendations generated by task force members. The areas covered in this report were identified by experts in the field as being of specific relevance to the broad epilepsy community when considering behavioral disorder in persons with epilepsy and ID; they are not intended to be exhaustive. The practice recommendations are based on the authors’ review of the limited research in this field combined with their experience supporting this population. These points are not graded but can be seen as expert opinion guiding future research and clinical practice.

Revealing a hidden curriculum of Black women’s erasure in sexual violence prevention policy

ABSTRACTThis article aims to challenge the framework by which rape and sexual assault prevention in higher education are being constituted by centring Black women’s experiences of sexual violence within a prevention and response policy framework. Numerous research studies exist in the literature regarding the specific experience of sexual violence for Black women within a national context that remains deeply committed to White supremacy [Buchanan, N. T., and A. J. Ormerod. 2002. “Racialized Sexual Harassment in the Lives of African American Women.” Women & Therapy 25 (3/4): 107–124; Crenshaw, K. 1989. “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics.” University of Chicago Legal Forum 140: 139–167; Donovan, R., and M. Williams. 2002. “Living at the Intersection: The Effects of Racism and Sexism on Black Rape Survivors.” Women & Therapy 25 (3/4): 95–105; McNair, L. D., and H. A. Neville. 1996. “African American Women Survivors of Sexual Assault: The Intersection of Race and Class.” Women & Therapy 18 (3/4): 107–118; Omolade, B. 1989. “Black Women, Black men, and Tawana Brawley – The Shared Condition.” Harvard Women’s Law Journal 12: 11–23; West, C. 2002. “Battered, Black, and Blue: An Overview of Violence in the Lives of Black Women.” Women & Therapy 25 (3/4): 5–27]. Using the critical pedagogy principle of ‘hidden curriculum’ or how what is directly communicated through educational processes also conveys unstated values, judgments, and regulatory norms, the author analyses the first report of the White House Task Force to Protect Students from Sexual Assault [2014. Not Alone: The First Report of the White House Task Force to Protect Students from Sexual Assault] for race-neutral language that contributes to the silencing of the sexual violence that Black college women experience. The necessity of race-conscious sexual assault policy is discussed.

Estimating Health-State Utility for Economic Models in Clinical Studies: An ISPOR Good Research Practices Task Force Report

Cost-utility models are increasingly used in many countries to establish whether the cost of a new intervention can be justified in terms of health benefits. Health-state utility (HSU) estimates (the preference for a given state of health on a cardinal scale where 0 represents dead and 1 represents full health) are typically among the most important and uncertain data inputs in cost-utility models. Clinical trials represent an important opportunity for the collection of health-utility data. However, trials designed primarily to evaluate efficacy and safety often present challenges to the optimal collection of HSU estimates for economic models. Careful planning is needed to determine which of the HSU estimates may be measured in planned trials; to establish the optimal methodology; and to plan any additional studies needed. This report aimed to provide a framework for researchers to plan the collection of health-utility data in clinical studies to provide high-quality HSU estimates for economic modeling. Recommendations are made for early planning of health-utility data collection within a research and development program; design of health-utility data collection during protocol development for a planned clinical trial; design of prospective and cross-sectional observational studies and alternative study types; and statistical analyses and reporting.

Application of the STROBE statement to the hypospadias literature: Report of the international pediatric urology task force on hypospadias

Observational studies, particularly case series, represent the majority of the current hypospadias research. As a result, this literature lacks standardization of surgical techniques, uniform definitions of hypospadias complications, and consistency of outcome reporting, which may make it difficult to compare results across studies. A modified version of the STROBE statement, containing 20 items, was presented at the International Pediatric Urology Task Force on Hypospadias meeting to assist with clear and transparent reporting of hypospadias studies. The adoption and implementation of this modified tool will allow investigators and health care providers to critically evaluate quality and identify bias within the literature. In addition this instrument will ensure consistency of reporting, improving objective comparisons between studies, unification of results, and development of evidence-based clinical guidelines. In this article, we have applied the modified STROBE statement to the hypospadias literature, aiming to create a guide on study reporting for pediatric urologists, and ultimately improve the quality of research in our field. We present itemized recommendations for adequate reporting of hypospadias studies and case series, ranging from drafting the abstract to addressing biases and potential sources of confounding. Included with each item is a brief explanation of its importance and potential effect on the study, as well as pertinent examples of hypospadias articles. A modified STROBE summary table containing 20 items is presented in (Supplementary Table 1). If properly conducted and reported, hypospadias studies have the potential to provide useful information to clinicians and surgeons. However, authors should recognize the inherent limitations of these observational studies, especially in the form of bias, which may introduce invalid data or limit generalizability. Thus, we expect that the use of this guiding tool will not only improve transparency of hypospadias reporting, but also improve its methodological quality, allowing proper comparison and interpretation of data across different institutions.

Indications and expectations for neuropsychological assessment in routine epilepsy care: Report of the ILAE Neuropsychology Task Force, Diagnostic Methods Commission, 2013–2017

Indications and expectations for neuropsychological assessment in routine epilepsy care: Report of the ILAE Neuropsychology Task Force, Diagnostic Methods Commission, 2013–2017

Classification of the epilepsies: New concepts for discussion and debate-Special report of the ILAE Classification Task Force of the Commission for Classification and Terminology.

SummaryThe ILAE Task Force on Classification presents a road map for the development of an updated, relevant classification of the epilepsies. Our objective is to explain the process to date and the plan moving forward as well as to invite further discussion about the newly proposed terms and concepts. Here, we present our response to feedback about the 2010 Organization of the Epilepsies and clarify the reintroduction of the word “classification” to map out a framework for epilepsy diagnosis. We introduce some new concepts and suggest four diagnostic levels: seizure type, epilepsy category, epilepsy syndrome, and epilepsy with (specific) etiology to denote specific levels of diagnosis. We expand the etiological categories to six, focusing on those with treatment implications. Finally, we discuss the changes in terminology originally suggested and modifications in response to comments from the epilepsy community. We welcome feedback and discussion from the global epilepsy community, particularly for the new suggested terms, so that we can cement a classification that both reflects current thinking and scientific understanding and provides a dynamic, evolving framework.

Poor Concordance Between Elevated Blood Pressures in the Preschool Years.

The 2013 US Preventive Services Task Force report found insufficient evidence for pediatric blood pressure screening. This retrospective study evaluated the reliability of successive annual blood pressure screening of children for hypertension at the 3-, 4-, and 5-year-old health maintenance visits (January 1, 2010 to June 18, 2014). Of 328 patients, 290 (88%) were normotensive at all 3 visits. All elevated blood pressures (≥95th percentile) were stage 1. No patient was hypertensive (3 elevated measures). The extended concordance correlation coefficient indicated poor agreement for systolic (0.19, 95% CI -0.49 to 0.72) and diastolic (0.11, 95% CI -0.39 to 0.56) measurements. Blood pressure at the 3-year (κ -0.008, 95% CI -0.11 to 0.09), 4-year (κ 0.09, 95% CI -0.06 to 0.24), or 5-year (κ 0.08, 95% CI -0.05 to 0.20) visit was not associated with elevated blood pressures at the other 2 time points. In the preschool years, stage 1 elevated blood pressures do not correlate with hypertension and may be better managed by watchful waiting and parental reassurance.

Government Sponsored Professional Sports Coaches and the Need for Better Child Protection

The recent media publicity given to the case of Amy Gerhing, the young Canadian teacher acquitted of having a sexual relationship with two of her pupils is in marked contrast to the lack of interest shown to the later cases of Gary Hinds, John Glyn Jones, Mike Edge, Matthew Pedrazzini, Paul North, Frank Slatterwaite, George Ormond and others, all sports coaches who have been convicted of sexually abusing the children they train. This lack of interest is reflected in the recently published Department for Culture, Media and Sport and Sport England Final Report of the Coaching Task Force, a document that sets out recommendations for the future of coaches and coaching in English sport. In amongst the Report’s 84 pages only one sentence makes any mention of the protection of the children these 3,000 coaches have the potential to be training. This article briefly discusses the Report’s proposals, the current state of child protection in sport in England and Wales and argues that with the advent of the publicly funded professional coaches recommended in the Report, the time has come for sport to be made subject to more areas of child protection law than at present.

The Future of Mixed Methods Task Force Report

The Future of Mixed Methods Task Force Report

Expanding Thinking Through a Kaleidoscopic Look Into the Future

The field of mixed methods research abounds with opportunities for creative development in terms of methodological advances and potential to contribute to important and complex societal problems. Inspired by issues that arose in the Mixed Methods International Research Association task force report on the future of mixed methods, this article contemplates its implications for challenges and opportunities for the mixed methods community for advancement in philosophy and methodology, innovative designs, technological advancements and big data, preparation of mixed methods researchers, and responsiveness to complex societal problems. We invite the mixed methods research community to participate in the conversation about these important, as yet unanswered, questions relevant for the future of mixed methods research and the world.

Statistical Methods for the Analysis of Discrete Choice Experiments: A Report of the ISPOR Conjoint Analysis Good Research Practices Task Force

Conjoint analysis is a stated-preference survey method that can be used to elicit responses that reveal preferences, priorities, and the relative importance of individual features associated with health care interventions or services. Conjoint analysis methods, particularly discrete choice experiments (DCEs), have been increasingly used to quantify preferences of patients, caregivers, physicians, and other stakeholders. Recent consensus-based guidance on good research practices, including two recent task force reports from the International Society for Pharmacoeconomics and Outcomes Research, has aided in improving the quality of conjoint analyses and DCEs in outcomes research. Nevertheless, uncertainty regarding good research practices for the statistical analysis of data from DCEs persists. There are multiple methods for analyzing DCE data. Understanding the characteristics and appropriate use of different analysis methods is critical to conducting a well-designed DCE study. This report will assist researchers in evaluating and selecting among alternative approaches to conducting statistical analysis of DCE data. We first present a simplistic DCE example and a simple method for using the resulting data. We then present a pedagogical example of a DCE and one of the most common approaches to analyzing data from such a question format—conditional logit. We then describe some common alternative methods for analyzing these data and the strengths and weaknesses of each alternative. We present the ESTIMATE checklist, which includes a list of questions to consider when justifying the choice of analysis method, describing the analysis, and interpreting the results.

What do we know about the nutritional status of the very old? Insights from three cohorts of advanced age from the UK and New Zealand.

Very old people (referred to as those aged 85 years and over) are the fastest growing age segment of many Western societies owing to the steady rise of life expectancy and decrease in later life mortality. In the UK, there are now more than 1·5 million very old people (2·5 % of total population) and the number is projected to rise to 3·3 million or 5 % over the next 20 years. Reduced mobility and independence, financial constraints, higher rates of hospitalisation, chronic diseases and disabilities, changes in body composition, taste perception, digestion and absorption of food all potentially influence either nutrient intake or needs at this stage of life. The nutritional needs of the very old have been identified as a research priority by the British Nutrition Foundation's Task Force report, Healthy Ageing: The Role of Nutrition and Lifestyle. However, very little is known about the dietary habits and nutritional status of the very old. The Newcastle 85+ study, a cohort of more than 1000 85-year olds from the North East of England and the Life and Living in Advanced Age study (New Zealand), a bicultural cohort study of advanced ageing of more than 900 participants from the Bay of Plenty and Rotorua regions of New Zealand are two unique cohort studies of ageing, which aim to assess the spectrum of health in the very old as well as examine the associations of health trajectories and outcomes with biological, clinical and social factors as each cohort ages. The nutrition domain included in both studies will help to fill the evidence gap by identifying eating patterns, and measures of nutritional status associated with better, or worse, health and wellbeing. This review will explore some of this ongoing work.