Development Of Evidence-based Guidelines Research Articles

Kaposi sarcoma incidence, survival and trends: Data from the information network on rare cancers in Europe (RARECAREnet)

BackgroundThis study provides updated information on Kaposi sarcoma (KS) in Europe during 1995–2007 from the RARECARENet project. MethodsData comes from 59 population-based cancer registries in 22 countries. KS was defined as ICD-O-3 morphology code 9140 combined with any topography code. Crude and age-adjusted incidence rates and relative survival for years of diagnosis 2000–2007 and with trends during 1995–2007 were calculated overall, by age and by country. ResultsThe crude annual incidence rate was 0.28 per 100,000 and age-adjusted incidence was 0.23 per 100,000; incidence increased with age, from 0.18/100,000 at age 0–44 to 0.25/100,000 at age 45–64 and 0.69/100,000 at age 65 and over. Age-adjusted incidence in males was more than four times that in females. Portugal, which had the highest incidence of AIDS in Europe, had by far the highest incidence of KS at age 0–44, 1.44/100,000, more than four times the rate in any other country. Incidence among males in Europe aged 0–44 fell significantly between 1995–1998 and 1999–2002, followed by a significant increase in 2003–2007. Younger patients, with predominantly AIDS-related KS, formerly had a worse prognosis, but since 1999–2001 5-year relative survival increased for patients aged under 65, and by 2005–2007 was 83–86 % for all three age groups 0–44, 45–64, and 65 and over. ConclusionSurvival and quality of life for the increasing number of people in Europe affected by KS should improve further following the development of evidence-based guidelines for its management. Population-based cancer registries will continue to play a vital role in monitoring the burden of KS and improvements in its outcome.

The associations between meeting 24-hour movement guidelines and adiposity in Asian Adolescents: The Asia-Fit Study.

Less is known about how compliance with 24-hour movement guidelines for physical activity (PA), sedentary behavior, and sleep affects adiposity in young people. The purposes of this study were to compare compliance with 24-hour movement guidelines in Asian adolescents and to examine the associations between compliance with 24-hour movement guidelines and body fat percentage. A sample of 12590 adolescents aged 13.63 (± 1.01) years from eight Asian metropolitan cities including Bangkok (Thailand), Hong Kong SAR, Kuala Lumpur (Malaysia), Seoul (South Korea), Shanghai (China), Singapore, Taipei (Taiwan), and Tokyo (Japan) completed interviewer-administered questionnaires to assess moderate-to-vigorous PA, recreational screen time, sleep duration, and covariates. Body fat percentage was measured using bioelectrical impedance analysis. We found that compliance with 24-hour movement guidelines differed in Asian adolescents across the eight cities. Adjusting for covariates, there was a negative association between number of the guidelines being met and body fat percentage in Asian adolescents. In addition, meeting only the sleep guideline and both the PA and sleep guidelines had negative associations with body fat percentage compared with no guidelines being met. Our findings improve the understanding about how compliance with 24-hour movement guidelines benefit a healthy body weight in adolescents, as well as contribute to development of evidence-based 24-hour movement guidelines for Asian young people. Future research is needed to gain better insights into the directionality of the associations between compliance with 24-hour movement guidelines and adiposity, as well as the mechanisms underlying the associations in Asian adolescents.

Diagnosis and treatment depression in schizophrenia.

Depression is the third most common illness among patients with schizophrenia which negatively affects the course of the disease and significantly contributes to the mortality rate, due to increased suicide. Depression, along with negative symptoms and cognitive deficits, is one of the main factors that significantly decreases the quality of life and the disease prognosis in patients with schizophrenia. In addition, depression increases the frequency of exacerbations and readmissions, decreases the quality and duration of remissions and is associated with more frequent substance abuse and an increased economic burden. Data on the prevalence of depression among patients with schizophrenia are contradictory and are associated with a low detection rate of depression in such patients, a lack of clear diagnostic criteria and difficulties in differentiation between extrapyramidal and negative symptoms. The average prevalence of depression that meets the diagnostic criteria of major depressive episodes in patients with schizophrenia is 25% at a specific point, and 60% over the course of a lifetime; the frequency of subsyndromal depression is much higher. It is essential to distinguish between primary (axial syndrome) and secondary depressive symptoms (extrapyramidal symptoms, psychogenic or nosogenic reactions, social factors, etc.) to determine treatment strategies. The published data relating to randomized clinical trials for the development of evidence-based guidelines are limited. Current recommendations are based mainly on the results of small-scale trials and reviews. Certain atypical antipsychotics (quetiapine, lurasidone, amisulpride, aripiprazole, olanzapine, clozapine) are superior to typical antipsychotics in the reduction of depressive symptoms. Clozapine is effective in the management of patients at risk from suicide. The additional prescription of antidepressants, transcranial magnetic stimulation and electroconvulsive therapy are not always effective and are only possible following the management of acute psychosis in cases when antipsychotic monotherapy proved to be ineffective.

Clostridium difficile Infection in the Plastic Surgery Population: Lessons from the ACS NSQIP Database.

Background:Clostridium difficile–associated infections (CDI) have a significant impact on morbidity and mortality of hospitalized medical and surgical patients. There is a paucity of data regarding the incidence, impact, and modifiable risk factors in the plastic surgery population.Methods:The ACS NSQIP database was retrospectively queried for all cases performed by plastic surgeons during 2016. All plastic surgery cases, combined cases, demographics, and baseline clinical characteristics were extracted from the database. The study population was divided into 2 groups based on the development of CDI. Independent variables for development of CDI were identified.Results:During the study period, a total of 29,256 patients underwent a procedure by plastic surgery, with the most commonly performed procedures involving the breast (58%) and trunk (14%). Only 44 patients developed post-operative CDI (0.1%). Factors independently associated with development of CDI were wound classification at the end of the surgery, COPD, procedures involving the trunk, and surgery for reconstruction of pressure ulcers. Outpatient surgery was associated with decreased odds of developing CDI [AOR (95% CI):0.2 (0.1, 0.4), adj P < 0.001]. Staying overnight did not increase the odds of developing CDI; however, staying for >1 day in the hospital was associated with an increased risk of CDI development [AOR (95% CI): 1.03 (1.01, 1.13), adj P = 0.001]. Combined cases, ASA, body mass index, diabetes, and active smoking were not associated with CDI.Conclusions:CDI are rare in the plastic surgery population and are most associated with trunk/decubitus ulcer reconstructions, inpatient hospital stay, and contaminated wounds. The patients that usually fit in these categories have acutely or chronically infected wounds, which are often treated with systemic antibiotics. For patient with decubitus ulcers and other trunk reconstruction, the guidelines for pre and post-operative systemic antibiotic usage is not well defined. For patients who have had trunk reconstruction, development of evidence-based antibiotic stewardship guidelines may help these patients by limiting antibiotic usage and thereby reducing the incidence of CDI.

Update on PCOS: Consequences, Challenges, and Guiding Treatment.

Polycystic ovary syndrome (PCOS) is one of the most common reproductive endocrine disorders in women and despite this, diagnostic challenges, delayed diagnosis, and less-than-optimal treatment regimens plague the condition. The International PCOS network, consisting of geographically diverse international experts in PCOS as well as consumers, engaged in a multi-year international evidence-based guideline development process that was jointly sponsored by the European Society for Human Reproduction and Embryology (ESHRE) and the American Society of Reproductive Medicine (ASRM). The guideline was published in 2018 and endorsed by more than 40 international societies involved in PCOS. Translation of this evidence-based guideline to medical practice and consumer groups remains a priority. However, there remain many challenges to both understanding the diagnosis and treatment of PCOS. Evidence suggests that both clinicians and consumers are not satisfied with the timeliness of diagnosis and treatment options. This review summarizes the important findings for diagnosis and treatment from the guidelines and expands on recent developments in the literature since its publication. Special attention to diagnosis at the ends of the reproductive spectrum are discussed and remaining areas of controversy are noted. Additionally, the review highlights some of the remaining challenges in the understanding and management of PCOS to help guide clinicians and investigators in this perplexing condition.

Abstract 255: National Institutes of Health Research Funding of the Top Science Gaps Recognized in the 2015 American Heart Association Emergency Cardiac Care Guidelines

Objective: A descriptive analysis of NIH funding of the top science gaps recognized in the 2015 AHA Emergency Cardiac Care cardiac arrest (CA) guidelines over a five-year period. Methods: A search within NIH RePORTER for the period of 2015 to 2019 was performed using the following terms: “cardiac arrest” or “cardiopulmonary resuscitation” or “heart arrest” or “circulatory arrest” or “pulseless electrical activity” or “ventricular fibrillation” or “resuscitation”. Grants were identified as CA research (yes/no) using predefined, published criteria. NIH funded CA abstracts were individually reviewed and categorized using the previously recognized ten most urgent science gaps in the 2015 AHA ECC CA guidelines published by Panchal et al. The data were analyzed descriptively. Results: The search yielded 1,518 NIH-funded grants over the study period, of which 172 (11.3%) were classified as individual CA grants. A total of 42 (24.4%) did not address a top 10 scientific gap. The remaining 130 grants addressed the following scientific gaps: optimization of post-CA care (78 grants, 45.3%), prediction of patients at risk of CA (12, 7%), developing tools for early neuroprognostication (7, 4.1%), hemodynamic monitoring/goal directed resuscitation (4, 2.3%), optimizing educational strategies for providers (4, 2.3%), optimal airway strategies (2, 1.2%), and understanding why bystanders fail to respond (1, 0.6%). Previously existing scientific networks or data centers accounted for 19 (11%) grants and 3 (1.7%) grants addressed both optimizing post-CA care and early neuroprognostication gaps. Recognized scientific gaps in dispatch-directed CPR, individualized resuscitation strategies, and novel technology for out-of-hospital CA identification and response did not receive specifically directed NIH grant funding. Conclusion: Additional research funding targeting critical knowledge gaps in the 2015 cardiac arrest guidelines is needed promote broader evidence-based guideline development. Current NIH funding is concentrated in a few areas leaving disparity among recognized high-yield scientific gaps in CA care.

Clinical Course and Outcomes of Sickle Cell Disease Patients with COVID-19 at a New York Hospital

Introduction:The outbreak of a novel infection, COVID-19, has greatly impacted the well-being of individuals worldwide. Persons with sickle cell disease (SCD) constitute a vulnerable population, subject to health disparities, who may have worse outcomes from COVID-19. Within the United States, New York has a large population of patients with SCD. Here, we analyze the clinical course and outcomes of SCD patients with COVID-19 who were admitted to a community teaching hospital in Brooklyn, NY.Methods:We conducted a retrospective chart review of adult patients with SCD hospitalized with laboratory- confirmed COVID-19. Electronic health records were reviewed to identify patients and analyze their clinical course. Clinical characteristics, laboratory and radiology data were assessed. Rates of acute chest syndrome (ACS), acute kidney injury (AKI) and venous thromboembolism (VTE) were determined. ACS was defined by the presence of fever and/or respiratory symptoms accompanied by a new pulmonary infiltrate on chest Xray. Data on use of blood transfusion, treatments, length of stay and mortality were collected.Results:Between March 1 to June 30, 2020, 53 adults with SCD were hospitalized at our institution. Of these, 13 patients had COVID-19 infection. The mean (±SD) age of the COVID-19 patients was 34±10 years (range, 22 to 50) with 54% being female. Seven patients (54%) were Hb SS, and 6 patients (46%) were Hb SC. Comorbid conditions included Diabetes Mellitus (1 patient), SLE (1), End-stage renal disease (1), prior VTE (4) and Avascular necrosis of hip (3). Four patients were on hydroxyurea.Clinical, laboratory and radiological findings are summarized in Table 1. While all the Hb SS patients presented with vaso-occlusive crisis, 4 of the 6 patients with Hb SC did not have symptoms of pain crisis. Chest pain and cough were the most common symptoms at presentation. During the hospital stay, 12 patients (92%) had at least one febrile episode >38°C, with 77% having recurrent fevers above 38.5°C.Eleven patients (85%) met criteria for ACS. Seventy-seven percent of all patients required supplemental oxygen. Nine patients (69%) were transfused, with 4 patients undergoing exchange transfusion. Sixty-seven percent of the transfused patients were transfused within 48 hours of admission. No patients required intubation or mechanical ventilation and none were admitted to the intensive care unit (ICU). Five patients (38.5%) received hydroxychloroquine while 84.6% were treated with antibiotics. No patient received remdesivir.Three patients (23%) developed AKI: of these, one patient required acute hemodialysis, the other two cases were mild with peak creatinine less than 2.0 mg/dl.Ninety-two percent of patients received prophylactic anticoagulation with either unfractionated heparin, enoxaparin or fondaparinux. One patient who did not receive an anticoagulant due to thrombocytopenia developed an acute deep vein thrombosis which was also catheter-related. Of note, during the initial phase of the pandemic standard dosing of prophylactic anticoagulants were used but in the later months, some patients received higher prophylactic doses in keeping with hospital protocol.The median length of hospital stay was 9.4 days (interquartile range, 8.1 to 13.3). There were no deaths - all patients were discharged home.Summary:Panepinto et al (Emerg Infect Dis.) reported a mortality of 7% in 178 SCD patients with COVID-19 in the United States. Other published reports have detailed more favorable outcomes (Arlet et al, Lancet and Appiah-Kubi et al, Br J Haematol.). In this small retrospective analysis of hospitalized SCD patients, there was no mortality. Acute chest syndrome was the most common complication observed. VTE and severe AKI were infrequent. Blood transfusion was performed in the majority of patients (69%); two thirds of the patients transfused received blood within 48 hours of hospitalization. There were no ICU admissions and no use of mechanical ventilation indicative perhaps of less severe COVID-19 disease. This may have been due to the young age of the cohort. Early use of blood transfusion may have been a factor in reducing disease severity and improving outcomes. The best approach to managing these patients is unclear. We advocate for the development and dissemination of evidence-based guidelines to manage SCD patients with COVID-19 to reduce morbidity and mortality in this at-risk population.DisclosuresNo relevant conflicts of interest to declare.

Strengthening prehospital clinical practice guideline development in South Africa: Reflections from guideline experts.

IntroductionDe novo (new) guideline development methods are well described and supported by numerous examples, including comprehensive checklists. However, alternative guideline development methods, which draw from existing up to date, high quality clinical practice guidelines instead of re-inventing the wheel, have not been adopted so readily, despite the potential efficiencies of such methods compared to de novo development. In Africa, guideline quality and rigour of development, especially for prehospital care, remains poor. This paper firstly describes the opinions of international guideline experts on the African Federation for Emergency Medicine guideline project, and secondly updates a framework for South African prehospital guideline development.MethodsWe conducted a qualitative study of expert reviews of an evidence-based guideline development project led by the African Federation for Emergency Medicine in 2016 for prehospital care in South Africa. We purposefully sampled key international and regional guideline experts from a range of organisations. Comments and voice memos, following a terms of reference guide, were thematically analysed through manual coding.ResultsA total of seven experts gave feedback. Key themes revolved around existing international clinical practice guidelines not being enough to cover context specific evidence, blurring of guideline responsibilities and output, and transparency of guideline decisions and conflicts of interest. We showcase three fit-for-purpose guideline development approaches and provide an updated alternative guideline development roadmap for low-resource settings.ConclusionIn order to create clinical practice guidelines that clinicians trust and use on a daily basis to change lives, guideline developers need rigorous yet pragmatic approaches that are responsive to end-user needs. Reflecting on the African Federation for Emergency Medicine prehospital guideline development project in 2016, this paper presents key guiding themes to strengthen guideline development in low- and middle-income countries and other low-resource settings and provides an updated hybrid guideline development approach.

Diagnostic Accuracy &amp; Pathology Revised Reports: Evidence-Based Guideline Development

Abstract Introduction/Objective Diagnostic errors in pathology may have adverse impact on patient outcomes and are often rectified through revised reports (RR). Improving patient outcomes with accurate RR is a tangible yet challenging benefit to assuring continuous quality improvement (CQI). Assessment and elevation of RR optimization requires counterbalance of workflow complexity in the diagnostic reporting domain. Implications inform best-practice guidelines for pathology RR and exemplify improved patient outcomes by driving down negative impacts from diagnostic errors. Methods A “Survey for RR in Pathology: Reality &amp; Best Practices” was sent via email to relevant stakeholders. The 8-item survey was designed by the National Pathology Quality Registry team &amp; ASCP’s Institute for Science, Technology &amp; Policy. The model included quantitative and qualitative feedback to probe current experiences with RR. The survey was open April 1-30, 2019, via Key Survey and used snowball sampling. Results Key results illuminate necessity for RR standardization. Survey findings represent 172 respondents. Ninety- two percent of respondents indicated report accuracy as a major indication for optimizing RR practices &amp; positively impacting patient care. Pathology practices assure appropriate RR by notifying a care provider when a change in diagnosis necessitates RR (89%) &amp; 86% of respondents indicate delineation of RR types (e.g. addenda, amendment). Still 54% of respondents see inappropriate RR use with lack of notification to care providers and 48% indicate no delineation of RR types. This balance-counterbalance highlights deviations from optimized RR and a need for guidelines. Effects on patient care or impact to a patient’s treatment plan was indicated by 43% who affirmed stratification of diagnostic discrepancies as major vs. minor. Solely focusing on changes in diagnosis (benign vs. malignant) was heralded by 19% of respondents as a reason to categorize diagnostic discrepancies. Forty-two percent of respondents indicate data-driven CQI in the RR domain. Conclusion Identified RR practice gaps decrease diagnostic accuracy, confirming the need for optimal RR guidelines. RR guidelines should focus on standardized nomenclature; active dialogue between laboratory team &amp; clinical care partners; streamlined workflows to assure accuracy; &amp; valuing transparency to derive improved patient outcomes based on high-quality diagnostic pathology RR.

Advancing Food Allergy Through Epidemiology: Understanding and Addressing Disparities in Food Allergy Management and Outcomes

Epidemiological studies have been pivotal in advancing understanding of the etiology of food allergy and in guiding the development of evidence-based guidelines for food allergy prevention and clinical management. In recent years, as research into the population-level distribution and determinants of food allergy has accumulated, data indicate that substantial differences in food allergy outcomes and management exist across racial/ethnic and other socioeconomic strata. This clinical commentary aims to provide a review of existing epidemiological studies and shed valuable light on the disparate burden of food allergy. Emerging methods to quantify environmental exposure and food allergy outcomes are detailed, as are specific areas in which future research is warranted. We also highlight the role that epidemiology plays in advancing health equity and provide a framework as to how it can effectively inform health policy at all phases of the policy cycle-from initial population health assessment to the evaluation and refinement of specific health policies (ie, national guidelines to promote earlier introduction of peanut-containing foods for allergy prevention).

Cancer-related fatigue in teenage and young adult cancer patients: Clinicians' perspectives, practice and challenges.

Cancer-related fatigue (CRF) is a common and distressing symptom experienced by teenage and young adult cancer patients (TYAs). This study aimed to explore clinicians' perspectives, practices and challenges in supporting TYAs with CRF. Ten clinicians from a TYA multidisciplinary team (MDT) participated in semi-structured interviews which were thematically analysed. Clinicians perceived CRF as a common, but individual experience for TYAs and framed the broad impact of CRF in the context of TYAs' development. Clinicians' assessment and management of CRF for TYAs varied. Clinicians described a range of challenges affecting their practice in supporting TYAs with CRF, including limited knowledge, difficulties engaging TYAs, inadequate time in consultations and a lack of age-appropriate resources. Despite clinicians' good insight into TYAs' unique experiences of CRF, the assessment and management of CRF for TYAs are complicated by numerous challenges. The development of evidence-based interventions and guidelines, clear pathways of care, and TYA-friendly resources, measures and programmes, is vital to support clinicians, and TYAs, in managing CRF.

Infections in Infants with SCID: Isolation, Infection Screening, and Prophylaxis in PIDTC Centers.

The Primary Immune Deficiency Treatment Consortium (PIDTC) enrolled children with severe combined immunodeficiency (SCID) in a prospective natural history study of hematopoietic stem cell transplant (HSCT) outcomes over the last decade. Despite newborn screening (NBS) for SCID, infections occurred prior to HSCT. This study's objectives were to define the types and timing of infection prior to HSCT in patients diagnosed via NBS or by family history (FH) and to understand the breadth of strategies employed at PIDTC centers for infection prevention. We analyzed retrospective data on infections and pre-transplant management in patients with SCID diagnosed by NBS and/or FH and treated with HSCT between 2010 and 2014. PIDTC centers were surveyed in 2018 to understand their practices and protocols for pre-HSCT management. Infections were more common in patients diagnosed via NBS (55%) versus those diagnosed via FH (19%) (p = 0.012). Outpatient versus inpatient management did not impact infections (47% vs 35%, respectively; p = 0.423). There was no consensus among PIDTC survey respondents as to the best setting (inpatient vs outpatient) for pre-HSCT management. While isolation practices varied, immunoglobulin replacement and antimicrobial prophylaxis were more uniformly implemented. Infants with SCID diagnosed due to FH had lower rates of infection and proceeded to HSCT more quickly than did those diagnosed via NBS. Pre-HSCT management practices were highly variable between centers, although uses of prophylaxis and immunoglobulin support were more consistent. This study demonstrates a critical need for development of evidence-based guidelines for the pre-HSCT management of infants with SCID following an abnormal NBS. NCT01186913.

Perspective of health personnel on end-of-life care in Intensive Care Units

ObjectiveTo understand for what care of the patient at the end of life and their relatives means to ICU health professionals. MethodsQualitative study with a Research-Action (AI) design, in two intensive care units of the city of Bogotá. Groups were formed in each unit and each group included at least six health professionals, the data collection techniques were: 4 participative assemblies and 6 clinical narratives, the data analysis was done through the preparation of the data, discovery of topics, coding and interpretation of data, relativisation and rigour of the data. Results20 ICU workers participated, the analysis of the data revealed four thematic categories: Multidisciplinary team of the ICU facing the end-of-life process, Management of critical patients and their families at the end of life in the ICU, Communication process between the patient, family and multidisciplinary team at the end of life, Ethical aspects at the end of life in the ICU ConclusionsThe professionals consider preserving quality of life during the patient's stay in the ICU a therapeutic objective. The development of evidence-based guidelines that facilitate multidisciplinary management at the end of life, customisation of care, effective communication, fulfilling the physical, emotional and spiritual needs of the person and their family and favouring the patient’s right of autonomy in decision making.

Minimum intervention dentistry in the US: an update from a cariology perspective.

Despite evidence strongly supporting use of non-invasive or minimally invasive procedures in caries management, there is still a large gap between evidence-based recommendations and application of these concepts in practice, with the practice of dentistry still largely dominated by invasive procedures in the US. This paper describes efforts in education and clinical practice in the US in the last decade to promote evidence-based cariology strategies, which support a minimum intervention dentistry (MID) philosophy. These include, for example: a competency-based core cariology curriculum framework which has been developed and disseminated. National education accreditation standards supporting caries management are likely to soon be changed to support assessment of best evidence in cariology. There are several ongoing efforts by organised dentistry and other groups involving dental educators, researchers and clinical practitioners to promote cariology concepts in practice, such as the development of evidence-based clinical practice guidelines for caries management by the American Dental Association. Within each of these strategies there are challenges, but also opportunities to expand the implementation of MID in the US, which create optimism for future improvements over time.

Current trends in the management of pancreatic cystic neoplasms in Korea: a national survey

Background/AimsThe study aimed to investigate the current practice patterns in the management of pancreatic cystic neoplasms in Korea.MethodsAn electronic survey was systematically distributed by email to members of the Korean Pancreatobiliary Association from December 2019 to February 2020.ResultsIn total, 115 (110 gastroenterologists, five surgeons) completed the survey, 72.2% of whom worked in a tertiary/academic medical center. Most (65.2%) followed the 2012/2017 International Association of Pancreatology guidelines for the management of pancreatic cystic neoplasms. A gadolinium-enhanced magnetic resonance imaging/magnetic resonance cholangiopancreatography was the most common first-line diagnostic modality (42.1%), but a contrast-enhanced computed tomography scan was preferred as a subsequent surveillance tool (58.3%). Seventy-four percent of respondents routinely performed endoscopic ultrasound-guided fine needle aspiration for pancreatic cystic neoplasms with suspicious mural nodules. Endoscopic ultrasound-guided fine needle aspiration cytology (94.8%) and cystic fluid carcinoembryonic antigen (95.7%) were used for cystic fluid analysis. Most (94%) typically recommended surgery in patients with high-risk stigmata, but 18.3% also considered proceeding with surgery in patients with worrisome features. Most (96.5%) would continue surveillance of pancreatic cystic neoplasms for more than 5 years.ConclusionsAccording to this survey, there was variability in the management of pancreatic cystic neoplasms among the respondents. These results suggest that the development of evidence-based guidelines for pancreatic cystic neoplasms that fit the Korean practice is needed to create an optimal approach to the management of pancreatic cystic neoplasms.

Measuring importance of outcomes to patients: a cross-sectional survey for the German anal cancer guideline

ObjectiveWe aimed to generate evidence on patients’ values and preferences to inform the development of the German national Evidence-based Anal Cancer Guideline. Study Design and SettingWe developed a list of health outcomes based on a systematic search. We then asked anal cancer patients and experts of the guideline development group in an online survey to (a) rate the relative importance of the outcomes in different clinical situations using a nine-point, three-category scale, and (b) select seven outcomes they considered most important for decision-making in each situation. ResultsParticipants rated almost half of the outcomes (45%) as critical for decision-making, and more than half (53%) as important. Only two outcomes (2%) were rated as low in importance. Agreement between expert and patient ratings was low to fair, and we found important discrepancies in how the relative importance of the outcomes was perceived. However, the rankings of outcomes were highly correlated. ConclusionDetermining the relative importance placed by anal cancer patients on outcomes provided useful information for developing guideline recommendations. Our approach may be useful for guideline developers who aim to include the patient perspective. Moreover, our findings may help health professionals caring for anal cancer patients in joint decision-making.

Management and prevention of varicella and measles infections in pediatric solid organ transplant candidates and recipients: An IPTA survey of current practice.

Varicella and measles infections can be life-threatening after solid organ transplantation (SOT) but may be preventable with live-attenuated vaccines (LAV). This survey conducted in January 2019 among subscribers of the International Pediatric Transplantation Association listserv aimed to explore the current strategies to prevent and manage both infections in the pediatric SOT population, including recommending LAV after SOT. The answers given by 95 pediatric SOT healthcare workers show that these strategies are not yet optimal and call for further education. In particular, 59% of respondents are unnecessarily waiting for a SOT candidate to be >1year of age to start administrating LAV before SOT. Interestingly, most respondents are willing to administer LAV after SOT (57%), and a fifth (21%) are already doing so, off-label. The survey queried the precautions taken to improve safety evaluations after LAV, and identified knowledge gaps and practitioners' concerns. The results of this survey could be used as a starting point for education and promotion of the safe administration of LAV in carefully selected SOT recipients; in turn, this would increase available data that would contribute to the development of evidence-based guidelines by the transplant societies and ultimately prevent these infections after SOT.

Disparities in Rates of Fusions in Lumbar Disc Pathologies.

Study Design:Retrospective cohort study.Objective:To identify disparities in surgical decision making for lumbar disc pathologies based on patient demographics, hospital characteristics, and temporal characteristics of admission.Methods:A retrospective analysis of patients admitted for surgical intervention of disc herniation or degeneration was performed to observe the effect of demographic, hospital, and admission-related factors on the decision to perform an isolated decompression or decompression with single level fusion using the National Inpatient Sample.Results:Of 84 953 patients with lumbar disc pathologies, 69 975 patients were treated electively, and 14 978 patients were treated nonelectively. Hispanic and Asian/Pacific Islander patients were less likely to receive a fusion for elective cases compared with White patients (odds ratio [OR] 0.88, P = .004; OR 0.70, P < .001, respectively). In elective cases, privately insured and self-paying patients were less likely to receive a fusion compared with Medicare patients (OR 0.83, P < .001; OR 0.66, P < .001, respectively), while this effect was limited to self-pay patients in nonelective cases (OR 0.44, P < .001). Urban teaching and nonteaching hospitals were less likely to perform fusions compared with rural hospitals in nonelective cases (OR 0.47, P < .001; OR 0.58, P < .001, respectively). Private for-profit hospitals were associated with higher rates of fusion in both elective and nonelective cases (OR 1.16, P = .003; OR 1.94, P < .001).Conclusion:This study illustrates disparities in the modality of surgical intervention for lumbar disc pathologies in terms of demographics, hospital characteristics, and temporal characteristics of admission. The development of more evidence-based guidelines is warranted to reduce variability seen in treatment regimens for these conditions.

Fabry Disease practice resource: Focused revision

Fabry Disease practice resource: Focused revision

Expert panel survey among occupational health and safety professionals in Denmark for prevention and handling of musculoskeletal disorders at workplaces

Occupational health and safety (OHS) professionals have a key role in supporting the health and work ability of employees, including preventing and handling musculoskeletal disorders (MSDs) at workplaces. MSDs are the leading cause of work disability, productivity loss and sickness absence in Europe. This may be due to limited consensus on use of effective OHS practices as facilitation of evidence-based practices increases quality of provided services. This study explored consensus of OHS professionals’ practices and examined OHS professionals’ request for development of evidence-based guidelines for prevention and handling of MSDs at workplaces. This was done by 1) field observations and interviews with OHS professionals working with ergonomics or MSDs at workplaces, 2) development and pilot testing of a panel survey, 3) a three-round expert panel survey and 4) workshop with OHS stakeholders within the OHS organisations in Denmark. The findings indicate limited consensus of OHS practices and a request for development of practice- and evidence-based guidelines for prevention and handling of work-related MSDs in Denmark. The study also presents an end user involving process for increased uptake and implementation of guidelines.