Facing erythrocytosis: Results of an international physician survey.
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ABSTRACT:
SUBMITTER: Rumi E
PROVIDER: S-EPMC8204407 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundRuxolitinib is established as treatment for symptomatic myeloproliferative neoplasm (MPN)-associated myelofibrosis. The strict inclusion and exclusion criteria and dose modification rules that applied to the COMFORTI and II studies that led to the licensing of ruxolitinib are not always applicable to routine clinical practice. Thus physicians now face decisions regarding ruxolitinib use that were not addressed in these pivotal trials.MethodsWe performed an online survey of hematologists practicing in Europe, Israel, the United Kingdom and the United States. Demographic details regarding the physicians and their practice as relates to MPNs were collected. Management decisions pertaining to the use of ruxolitinib were obtained regarding 10 clinical scenarios relating to anemia, thrombocytopenia, frailty, infection and lack or loss of response to ruxolitnib in MF patients.Results140 physicians responded to the survey. There were marked differences regarding their decisions for ruxolitinib administration in MF patients with or developing anemia or thrombocytopenia. Similarly there was little consensus regarding management of patients refractory or losing a response to ruxolitinib. There were differences between "MPN-focused" and "non-MPN-focused" physicians in certain areas.ConclusionPhysician practices regarding management of MF patients experiencing ruxolitinib-related toxicities or in whom response to the drug is lost was variable. This was true of "MPN-focused" and "non-MPN-focused" physicians in certain cases. Physician education and experience in using ruxolitinib may improve patient management.
| S-EPMC8190959 | biostudies-literature
Project description:Fibrodysplasia ossificans progressiva (FOP), a disabling disorder of progressive heterotopic ossification (HEO), is caused by heterozygous gain-of- function mutations in Activin receptor A, type I (ACVR1, also known as ALK2), a bone morphogenetic protein (BMP) type I receptor. Presently, symptomatic management is possible, but no definitive treatments are available. Although extensive guidelines for symptomatic management are widely used, regional preferences exist. In order to understand if there was worldwide consensus among clinicians treating FOP patients, an expert panel of physicians directly involved in FOP patient care was convened. Using a modified Delphi method, broad international consensus was reached on four main topics: diagnosis, prevention of flare-ups, patient and family-centered care and general clinical management issues. This study of physician preferences provides a basis for standardization of clinical management for FOP.
| S-EPMC5468985 | biostudies-literature
Project description:Although the current literature reports an acceptable rate of complications with the use of a perineal post in hip arthroscopy, they are still possible and preventable. The purpose of this study was to survey International Society for Hip Arthroscopy (ISHA) members on their use of postless distraction in hip arthroscopy. A 19-question survey was emailed to hip preservation surgeons that are members of ISHA. The questions examined surgeons' location, experience, utilization of a perineal post or postless distraction and any complications they may have encountered. In all, 145 respondents completed the survey. Regarding complications encountered when using a perineal post, the most frequent responses were temporary nerve damage (115, 80.6%), temporary genitourinary complications (39, 27%), temporary genital skin injury (35, 24%) and permanent nerve injury (12, 8%). Regarding the postless technique, of the 60 respondents who noted they have utilized postless distraction, 9 (15%) reported complications, with 7 (12%) reporting temporary nerve damage being the most common and 0 reporting cases of permanent nerve injury. These were statistically significantly less than those reported with a perineal post. Ninety-seven percent reported that after utilizing postless distraction, their patients were recovering better than or the same as when using a perineal post. This survey had excellent international participation by experienced hip arthroscopists. There were a statistically significantly decreased number of complications reported by the surgeons utilizing postless distraction. This survey highlights that postless distraction is being done successfully with lower reported complications and excellent patient recovery.
| S-EPMC11005764 | biostudies-literature
Project description:The surgical treatment of patients with complex ventral hernias is challenging. The aim of this study was to present an international overview of expert opinions on current practice. A survey questionnaire was designed to investigate preoperative risk management, surgical approach and mesh choice in patients undergoing complex hernias repair, and treatment strategies for infected meshes. Geographical location of practice, experience and annual volumes of the surgeons were compared. Of 408 surgeons, 234 (57.4 per cent) were practising in the USA, 116 (28.4 per cent) in Europe, and 58 (14.2 per cent) in other countries. Some 412 of 418 surgeons (98.6 per cent) performed open repair and 322 of 416 (77.4 per cent) performed laparoscopic repair. Most recommended preoperative work-up/lifestyle changes such as smoking cessation (319 of 398, 80.2 per cent) and weight loss (254 of 399, 63.7 per cent), but the consequences of these strategies varied. American surgeons and less experienced surgeons were stricter. Antibiotics were given at least 1 h before surgery by 295 of 414 respondents (71.3 per cent). Synthetic and biological meshes were used equally in contaminated primary hernia repair, whereas for recurrent hernia repair synthetic mesh was used in a clean environment and biological or no mesh in a contaminated environment. American surgeons and surgeons with less experience preferred biological mesh in contaminated environments significantly more often. Percutaneous drainage and antibiotics were the first steps recommended in treating mesh infection. In the presence of sepsis, most surgeons favoured synthetic mesh explantation and further repair with biological mesh. There remains a paucity of good-quality evidence in dealing with these hernias, leading to variations in management. Patient optimization and issues related to mesh choice and infections require well designed prospective studies.
| S-EPMC7893472 | biostudies-literature
Project description:BackgroundIn-centre haemodialysis (ICHD) is the most common dialysis method used by patients worldwide. However, quality of life and clinical outcomes in patients treated via ICHD have not improved for some time. 'High-dose' haemodialysis (HD) regimens--which are longer and/or more frequent than conventional regimens and are particularly suitable to delivery in the home--may offer a route to improved outcomes and quality of life. This survey aimed to determine nephrologists' views on the validity of alternatives to ICHD, particularly home HD and high-dose HD.MethodsA total of 1,500 nephrologists from Europe, Canada and the United States were asked to respond to an online questionnaire that was designed following previous qualitative research. Certified nephrologists in practice for 2-35 years who managed >25 adult dialysis patients were eligible to take part.ResultsA total of 324 nephrologists completed the survey. ICHD was the most common type of dialysis used by respondents' current patients (90%), followed by peritoneal dialysis (8%) and home HD (2%). The majority of respondents believed that: home HD provides better quality of life; increasing the frequency of dialysis beyond three times per week significantly improves clinical outcomes; and longer dialysis sessions performed nocturnally would result in significantly better clinical outcomes than traditional ICHD.ConclusionsSurvey results indicated that many nephrologists believe that home HD and high-dose HD are better for the patient. However, the majority of their patients were using ICHD. Education, training and support on alternative dialysis regimens are needed.
| S-EPMC3912927 | biostudies-literature
Project description:Aircraft noise can disturb the sleep of residents living near airports. To investigate potential effects of aircraft noise on sleep, recruitment surveys for a pilot field study were mailed to households around Atlanta International Airport. Survey items included questions about sleep quality, sleep disturbance by noise, noise annoyance, coping behaviors, and health. Of 3159 deliverable surveys, 319 were returned (10.1%). Calculated outdoor nighttime aircraft noise (Lnight) was significantly associated with lower sleep quality (poor or fair; odds ratio (OR) = 1.04/decibel (dB); p < 0.05), trouble falling asleep within 30 min ?1/week (OR = 1.06/dB; p < 0.01), and trouble sleeping due to awakenings ?1/week (OR = 1.04/dB; p < 0.05). Lnight was also associated with increased prevalence of being highly sleep disturbed (OR = 1.15/dB; p < 0.0001) and highly annoyed (OR = 1.17/dB; p < 0.0001) by aircraft noise. Furthermore Lnight was associated with several coping behaviors. Residents were more likely to report often or always closing their windows (OR = 1.05/dB; p < 0.01), consuming alcohol (OR = 1.10/dB; p < 0.05), using television (OR = 1.05/dB; p < 0.05) and using music (OR = 1.07/dB; p < 0.05) as sleep aids. There was no significant relationship between Lnight and self-reported general health or likelihood of self-reported diagnosis of sleep disorders, heart disease, hypertension or diabetes. Evidence of self-reported adverse effects of aircraft noise on sleep found in this pilot study warrant further investigation in larger, more representative subject cohorts.
| S-EPMC6888482 | biostudies-literature
Project description:BackgroundGraphics are increasingly used to represent the spread of infectious diseases (e.g., influenza, Zika, Ebola); however, the impact of using graphics to adequately inform the general population is unknown.ObjectiveTo examine whether three ways of visually presenting data (heat map, dot map, or picto-trendline)-all depicting the same information regarding the spread of a hypothetical outbreak of influenza-influence intent to vaccinate, risk perception, and knowledge.DesignSurvey with participants randomized to receive a simulated news article accompanied by one of the three graphics that communicated prevalence of influenza and number of influenza-related deaths.SettingInternational online survey.Participants16,510 adults living in 11 countries selected using stratified random sampling based on age and gender.MeasurementsAfter reading the article and viewing the presented graphic, participants completed a survey that measured interest in vaccination, perceived risk of contracting disease, knowledge gained, interest in additional information about the disease, and perception of the graphic.ResultsHeat maps and picto-trendlines were evaluated more positively than dot maps. Heat maps were more effective than picto-trendlines and no different from dot maps at increasing interest in vaccination, perceived risk of contracting disease, and interest in additional information about the disease. Heat maps and picto-trendlines were more successful at conveying knowledge than dot maps. Overall, heat maps were the only graphic to be superior in every outcome.LimitationsResults are based on a hypothetical scenario.ConclusionHeat maps are a viable option to promote interest in and concern about infectious diseases.
| S-EPMC5660609 | biostudies-literature
Project description:BackgroundHemophilia gene therapy is a rapidly evolving therapeutic approach in which a number of programs are approaching clinical development completion.ObjectiveThe aim of this study was to evaluate knowledge and perceptions of a variety of health care practitioners and scientists about gene therapy for hemophilia.MethodsThis survey study was conducted February 1 to 18, 2019. Survey participants were members of the ISTH, European Hemophilia Consortium, European Hematology Association, or European Association for Hemophilia and Allied Disorders with valid email contacts. The online survey consisted of 36 questions covering demographic information, perceptions and knowledge of gene therapy for hemophilia, and educational preferences. Survey results were summarized using descriptive statistics.ResultsOf the 5117 survey recipients, 201 responded from 55 countries (4% response rate). Most respondents (66%) were physicians, and 59% were physicians directly involved in the care of people with hemophilia. Among physician respondents directly involved in hemophilia care, 35% lacked the ability to explain the science of adeno-associated viral gene therapy for hemophilia, and 40% indicated limited ability or lack of comfort answering patient questions about gene therapy for hemophilia based on clinical trial results to date. Overall, 75% of survey respondents answered 10 single-answer knowledge questions correctly, 13% incorrectly, and 12% were unsure of the correct answers.ConclusionsThis survey highlighted knowledge gaps and educational needs related to gene therapy for hemophilia and, along with other inputs, has informed the development of "Gene Therapy in Hemophilia: An ISTH Education Initiative."
| S-EPMC7292673 | biostudies-literature
Project description:BackgroundEarly diagnosis and referral to treatment prior to age 3-5 years improves the prognosis of children with Autism Spectrum Disorder (ASD). However, ASD is often not diagnosed until age 3-4 years, and medical providers may lack training to offer caregivers evidence-based treatment recommendations. This study tested hypotheses that 1) children with ASD would be diagnosed between ages 3-4 years (replicating prior work), 2) caregivers would receive little information beyond the diagnosis from their medical providers, and 3) caregivers would turn to other sources, outside of their local health care professionals, to learn more about ASD.Methods146 ASD caregivers responded to an online survey that consisted of questions about demographics, the diagnostic process, sources of information/support, and the need and availability of local services for ASDs. Hypotheses were tested using descriptives, regression analyses, analyses of variance, and chi-squared.ResultsThe average age of diagnosis was 4 years, 10 months and the mode was 3 years. While approximately 40% of professionals gave additional information about ASD after diagnosis and 15-34% gave advice on medical/educational programs, only 6% referred to an autism specialist and 18% gave no further information. The diagnosis of Autism was made at earlier ages than Asperger's Disorder or PDD-NOS. Developmental pediatricians (relative to psychiatrists/primary care physicians, neurologists, and psychologists) were associated with the lowest age of diagnosis and were most likely to distribute additional information. Caregivers most often reported turning to the media (i.e., internet, books, videos), conferences, and other parents to learn more about ASD.ConclusionThe average age of ASD diagnosis (4 years, 10 months) was later than optimal if children are to receive the most benefit from early intervention. Most professionals gave caregivers further information about ASDs, especially developmental pediatricians, but a sizeable minority did not. This may reflect a lack of training in the wide range of behaviors that occur across the autism spectrum. Parents turned to outside sources to learn more about ASD. We recommend that all physicians receive specialized training about ASDs to improve upon early screening and diagnosis, and then advise caregivers about empirically-supported services.
| S-EPMC2235850 | biostudies-literature
Project description:ObjectivesPhysician-facing decision support tools facilitate shared decision-making (SDM) during informed consent, but it is unclear whether they are comprehensive in the domains they measure. In this scoping review, we aimed to (1) identify the physician-facing tools used during SDM; (2) assess the patient-centered domains measured by these tools; (3) determine whether tools are available for older adults and for use in various settings (elective vs. emergent); and (4) characterize domains future tools should measure.MethodsUsing the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews, Embase, Medline, and Web of Science were queried for articles published between January 2000 and September 2022. Articles meeting inclusion criteria underwent title and abstract review. Eligible studies underwent data abstraction by two reviewers.ResultsOf 4365 articles identified, 160 were eligible. Tools to aid in surgical SDM focus on elective procedures (79%) and the outpatient setting (71%). Few tools are designed for older adults (5%) or for nonelective procedures (9%). Risk calculators were most common, followed by risk indices, prognostic nomograms, and communication tools. Of the domains measured, prognosis was more commonly measured (85%), followed by alternatives (28%), patient goals (36%), and expectations (46%). Most tools represented only one domain (prognosis, 33.1%) and only 6.7% represented all four domains.Conclusions and implicationsTools to aid in the surgical SDM process measure short-term prognosis more often than patient-centered domains such as long-term prognosis, patient goals, and expectations. Further research should focus on communication tools, the needs of older patients, and use in diverse settings.
| S-EPMC10431347 | biostudies-literature