Avoiding PICU admission following PSF for neuromuscular scoliosis in non-ambulatory cerebral palsy managed with ERAS protocol.

PURPOSE: Children with neuromuscular scoliosis (NMS) undergoing posterior spinal fusion (PSF) have historically been managed post-operatively in the pediatric intensive care unit (PICU) due to institutional tendencies. This study sought to define risk factors for PICU admission when using an enhanced recovery after surgery (ERAS) pathway. METHODS: A retrospective review of children with non-ambulatory (GMFCS 4 or 5) cerebral palsy undergoing PSF for NMS performed at two institutions by 5 surgeons. Both institutions have a pre-existing ERAS pathway for NMS patients consisting of post-surgical transfer to the hospital floor with early reinstitution of feeding and mobilization. PICU admission is used at the discretion of the surgeon and anesthesiologist rather than by institutional decree. Patient and surgical factors were assessed for risk factors of PICU admission. RESULTS: A total of 103 children were included (84% GMFCS 5, mean 14.52 years (± 3.4 years)). Forty children (38.8%) required postoperative PICU admission. PICU admission was associated with seizure disorder (P = 0.09), pre-existing feeding tube (P = 0.003), tracheostomy (P = 0.03), and modified GMFCS-5 subclassification (P = 0.003). Independent predictors of PICU admission include pre-existing feeding (Odd's ratio = 2.9, P = 0.02) and length of surgery (Odd's ratio = 2.6, P < 0.001), with surgery lasting ≥ 5.0 h having an 82.5% sensitivity and 63.5% specificity (AUC 0.8, P < 0.001) for post-operative PICU admission. CONCLUSION: The majority of children with non-ambulatory cerebral palsy can be successfully managed on the hospital floor following PSF. The extent of central neuromotor impairment is significantly associated with PICU admission along with surgery lasting longer than 5 h.

Outcomes of Posterior Spinal Fusion in Pediatric Patients with Down Syndrome.

BACKGROUND: Trisomy 21 or Down syndrome is associated with multiple orthopaedic manifestations. Although cervical instability is the most common spinal condition associated with Down syndrome, the prevalence of scoliosis has been estimated at 4.8% to 8.7%. Very few prior studies have documented the role of spinal fusion in this population, and all have included ≤10 patients. METHODS: An institutional review board-approved multicenter retrospective analysis of patients with Down syndrome treated with spinal fusion between January 2009 and December 2019 was performed by cross-referencing Current Procedural Terminology (CPT) and International Classification of Diseases, Ninth and Tenth Revisions (ICD-9 and ICD-10) codes. Patients were followed for ≥2 years, with a mean follow-up of 3.77 years. Clinical and radiographic outcomes were collected, and complications were documented using the Clavien-Dindo-Sink (CDS) classification. RESULTS: A total of 23 patients were included: 96% had ≥1 medical comorbidities, including 16 (70%) with congenital heart disease, of whom 88% had previous cardiac surgery, and 10 (44%) with thyroid disorders. All 23 patients underwent posterior spinal fusion. The mean estimated blood loss was 617 ± 459 mL, the mean length of the surgical procedure was 290 ± 92.7 minutes, and the mean length of hospital stay was 6.03 ± 2.91 days. The major Cobb angle measured 61.7° ± 17.6°, which corrected to 19.4° ± 14.8° (68.6% correction; p < 0.001), with well-maintained correction at 2 years of 22.0° ± 10.3° (64.3% correction; p = 0.158). Thirteen (57%) of 23 patients had a change in curve of >5°. There were no intraoperative complications; however, 12 patients (52%) sustained postoperative complications (e.g., need for reoperation, implant failure, and pulmonary complications), including 6 patients with CDS type 3 or 4 (e.g., wound dehiscence, late superficial abscess, pleural effusion, pseudarthrosis, and readmission for hypoxia). Four patients (17%) required a revision surgical procedure. One patient (4%) required an unplanned intensive care unit admission. CONCLUSIONS: Although instrumented spinal fusion can effectively correct spinal deformity in these patients, complications are more frequent than in children with adolescent idiopathic scoliosis, with over half of patients sustaining a complication. LEVEL OF EVIDENCE: Prognostic Level III . See Instructions for Authors for a complete description of levels of evidence.

Power versus manual pedicle tract preparation: a multi-center study of early adopters.

STUDY DESIGN: Retrospective cohort, multicenter. A single surgeon study demonstrated that pedicle tract preparation with power tools was associated with lower fluoroscopy times and revision rates compared to manual tools, while maintaining patient safety. OBJECTIVE: Our purpose was to determine the safety of power-assisted pedicle tract preparation by early adopters of this technology. METHODS: Retrospective review comparing patients that underwent posterior spinal fusion by seven pediatric spine surgeons at six institutions between January 1, 2008 and August 31, 2019. The manual pedicle tract preparation used a pedicle awl. Power tract preparation used a flexible 2.0-2.4 mm drill bit, followed by a larger drill bit or a reamer. All screws were inserted with power technique. RESULTS: In the manual tract preparation group, 9424 screws were placed in 585 cases. In the power tract preparation group, 22,209 screws were placed in 1367 cases. Seven patients (7/1952; 0.36%; 95% CI: 0.14-0.74%) had 11 mal-positioned screws (11/31,633; 0.03%; 95% CI: 0.017-0.062%). Seven screws (7/9424; 0.07%; 95% CI: 0.030-0.15%) were in the manual cohort and four (4/22,209; 0.02%; 95% CI: 0.0049-0.046%) were in the power cohort. There were significantly more revisions per screw in the manual cohort (p = 0.02). However, there were not significantly more revisions per patient in the manual cohort (manual: 0.5%, 3/585 vs. power: 0.3%, 4/1,367; p = 0.43). Of these seven, three patients (3/585; 0.5%; 95% CI: 0.1-1.5%) experienced neurologic injury or neuro-monitoring changes requiring screw removal in the manual cohort, and 1 patient (1/1,367, 0.07%; 95% CI: 0.002-0.4%) in the power cohort (p = 0.08). Three additional patients underwent revision in the power cohort: 1 for an asymptomatic lateral breech, 1 for a spinal headache/medial breech that developed after an MVA, and 1 for an iliac vein injury during pedicle tract preparation. CONCLUSION: This is the first multi-center study examining power pedicle preparation. Overall, 99.9% of pedicle screws placed with power pedicle preparation did not have complications or revision. Equivalent patient safety was demonstrated compared to manual technique. LEVEL OF EVIDENCE: III.

Short term outcomes of an enhanced recovery after surgery (ERAS) pathway versus a traditional discharge pathway after posterior spinal fusion for adolescent idiopathic scoliosis.

PURPOSE: Enhanced Recovery after Surgery (ERAS) pathways have been shown to decrease length of stay (LOS) after posterior spinal fusion (PSF) for adolescent idiopathic scoliosis (AIS). The aim of this study was to compare immediate post-operative outcomes following an ERAS pathway with a traditional pathway for AIS. METHODS: A prospective dual-center study of patients treated using an ERAS pathway (203 patients) or a traditional discharge (TD) pathway (73 patients) was performed with focus on pain at discharge, quality of life at one month, and return to school/work. RESULTS: LOS was 55% less in the ERAS group (4.8 days TD vs. 2.2 days ERAS, p < 0.001). Length of surgery (4.8 h TD vs. 2.8 h, p < 0.001) and EBL (500 cc vs. 240 cc, p < 0.001) were greater in the TD group, likely related to larger curve magnitudes ((62.0° TD vs. 54.0° ERAS, p < 0.001), a higher percentage of patients undergoing osteotomies (94% vs. 46%, p < 0.001) and more levels fused (11.4 ± 1.6 vs. 10.1 ± 2.6, p < 0.001) in the TD group. Regression analysis showed no difference in Visual Analog Score (VAS) score at discharge or quality of recovery using the QOR9 instrument between groups at follow up. There was no difference in return to school (p = 0.43) and parents' return to work (p = 0.61) between the groups. CONCLUSION: Patients managed with an ERAS pathway had similar pain scores at discharge than those managed with a TD pathway. Both groups showed evidence of rapid return to normalcy by the first follow up visit.

Validation of a scale for assessing attitudes towards outcomes of genetic cancer testing among primary care providers and breast specialists.

OBJECTIVE: To develop a generic scale for assessing attitudes towards genetic testing and to psychometrically assess these attitudes in the context of BRCA1/2 among a sample of French general practitioners, breast specialists and gyneco-obstetricians. STUDY DESIGN AND SETTING: Nested within the questionnaire developed for the European InCRisC (International Cancer Risk Communication Study) project were 14 items assessing expected benefits (8 items) and drawbacks (6 items) of the process of breast/ovarian genetic cancer testing (BRCA1/2). Another item assessed agreement with the statement that, overall, the expected health benefits of BRCA1/2 testing exceeded its drawbacks, thereby justifying its prescription. The questionnaire was mailed to a sample of 1,852 French doctors. Of these, 182 breast specialists, 275 general practitioners and 294 gyneco-obstetricians completed and returned the questionnaire to the research team. Principal Component Analysis, Cronbach's α coefficient, and Pearson's correlation coefficients were used in the statistical analyses of collected data. RESULTS: Three dimensions emerged from the respondents' responses, and were classified under the headings: "Anxiety, Conflict and Discrimination", "Risk Information", and "Prevention and Surveillance". Cronbach's α coefficient for the 3 dimensions was 0.79, 0.76 and 0.62, respectively, and each dimension exhibited strong correlation with the overall indicator of agreement (criterion validity). CONCLUSIONS: The validation process of the 15 items regarding BRCA1/2 testing revealed satisfactory psychometric properties for the creation of a new scale entitled the Attitudes Towards Genetic Testing for BRCA1/2 (ATGT-BRCA1/2) Scale. Further testing is required to confirm the validity of this tool which could be used generically in other genetic contexts.

Effects of Ambulation and Nondependent Transfers on Vital Signs in Patients Receiving Norepinephrine.

PURPOSE: To assess the safety of mobilizing patients receiving low-dose norepinephrine (0.05 µg/kg per min) by examining mean arterial pressure and heart rate before and after activity with parameters set by the physician. BACKGROUND: Norepinephrine is a peripheral vasoconstrictor administered for acute hypotension. During activity, blood flows to the periphery to supply muscles with oxygen, which may oppose the norepinephrine vasoconstriction. The safety of mobilizing patients receiving norepinephrine is unclear. METHODS: Heart rate, mean arterial pressure, norepinephrine dose, and activity performed were extracted retrospectively from charts of 47 cardiothoracic surgery patients during the first patient transfer to chair or ambulation with norepinephrine infusing. Mean arterial pressure and heart rate were compared before and after physical therapy (paired t tests). Differences among norepinephrine doses and physical activity levels were evaluated (Kruskal-Wallis test). RESULTS: Forty-one of the 47 patients (87%) tolerated the activity within safe ranges of vital signs. The change in patients' mean arterial pressure from before to after activity was not significant (P = .16), but a significant increase in heart rate occurred after activity (P < .001). A Kruskal-Wallis test showed no significant difference in the norepinephrine dose and activity level (χ2 = 6.34, P = .17). No instances of cardiopulmonary or respiratory arrest occurred during any physical therapy sessions. CONCLUSIONS: Infusion of low-dose norepinephrine should not be considered an automatic reason to keep patients on bed rest.

General Practitioners and Breast Surgeons in France, Germany, Netherlands and the UK show variable breast cancer risk communication profiles.

BACKGROUND: No information is available on the attitudes of General Practitioners (GPs) and Breast Surgeons (BSs) to their delivery of genetic, environmental and lifestyle risk factor information about breast cancer. The aim of this study was to describe the Breast Cancer Risk Communication Behaviours (RCBs) reported by GPs and BSs in four European countries and to determine the relationships between their RCBs and their socio-occupational characteristics. METHODS: Self-administered questionnaires assessing breast cancer risk communication behaviours using vignettes were mailed to a sample of Breast Surgeons (BS) and General Practitioners (GP) working in France, Germany, the Netherlands, and the UK (N = 7292). Their responses to questions about the risk factors were first ordered and compared by specialty and country after making multivariate adjustments. Rather than defining a standard Risk Presentation Format (RPF) a priori, the various RPFs used by the respondents were analyzed using cluster analysis. RESULTS: Family history and hormonal replacement therapy were the risk factors most frequently mentioned by the 2094 respondents included in this study. Lifestyle BC risk factors such as obesity and alcohol were rarely/occasionally mentioned, but this point differed (p < 0.001) depending on the country and the specialty of the providers involved. Five distinct RPF profiles including the numerical/verbal presentation of absolute/relative risks were identified. The most frequently encountered RPF (34.2%) was characterized by the fact that it included no negative framing of the risks, i.e., the probability of not developing cancer was not mentioned. Age, specialty and country of practice were all found to be significant determinants of the RPF clusters. CONCLUSIONS: The increasing trend for GPs and BSs to discuss lifestyle risk factors with their patients suggests that this may be a relevant means of improving breast cancer prevention. Physicians' risk communication skills should be improved during their initial and vocational training.

Descriptive data analysis examining how standardized assessments are used to guide post-acute discharge recommendations for rehabilitation services after stroke.

BACKGROUND: Use of standardized assessments in acute rehabilitation is continuing to grow, a key objective being to assist clinicians in determining services needed postdischarge. OBJECTIVE: The purpose of this study was to examine how standardized assessment scores from initial acute care physical therapist and occupational therapist evaluations contribute to discharge recommendations for poststroke rehabilitation services. DESIGN: A descriptive analysis was conducted. METHODS: A total of 2,738 records of patients admitted to an acute care hospital with a diagnosis of stroke or transient ischemic attack were identified. Participants received an initial physical therapist and occupational therapist evaluation with standardized assessments and a discharge recommendation of home with no services, home with services, inpatient rehabilitation facility (IRF), or skilled nursing facility (SNF). A K-means clustering algorithm determined if it was feasible to categorize participants into the 4 groups based on their assessment scores. These results were compared with the physical therapist and occupational therapist discharge recommendations to determine if assessment scores guided postacute care recommendations. RESULTS: Participants could be separated into 4 clusters (A, B, C, and D) based on assessment scores. Cluster A was the least impaired, followed by clusters B, C, and D. In cluster A, 50% of the participants were recommended for discharge to home without services, whereas 1% were recommended for discharge to an SNF. Clusters B, C, and D each had a large proportion of individuals recommended for discharge to an IRF (74%-80%). There was a difference in percentage of recommendations across the clusters that was largely driven by the differences between cluster A and clusters B, C, and D. LIMITATIONS: Additional unknown factors may have influenced the discharge recommendations. CONCLUSIONS: Participants poststroke can be classified into meaningful groups based on assessment scores from their initial physical therapist and occupational therapist evaluations. These assessment scores, in part, guide poststroke acute care discharge recommendations.

Cancer risk communication, predictive testing and management in France, Germany, the Netherlands and the UK: general practitioners' and breast surgeons' current practice and preferred practice responsibilities.

Genetic testing has its greatest public health value when it identifies individuals who will benefit from specific interventions based upon their risk. This paradigm is the basis for the use of predictive tests, such as BRCA1/BRCA2 testing which has become part of clinical practice for more than a decade. Currently predictive BRCA1/BRCA2 testing is offered to women using low, moderate and high risk based upon family history as cut-off levels. Non-genetic health professionals such as general practitioners (GPs) and breast surgeons (BS) are seen as gatekeepers to manage demand and/or facilitate access to appropriate services for high-risk patients. Data about current practices are lacking. The paper presents data on the current practice of GPs' and BS' cancer risk assessment, referral practices and preferred practice responsibilities for women at risk for familial breast cancer in France, Germany, the Netherlands and the UK derived by a self-administered questionnaire send to a representative sample of GPs and BS in the four countries. One thousand one hundred ninety-seven GPs and 1,223 BS completed the questionnaire. Both GPs and BS reported that they are consulted by a considerable number of patients presenting with concerns about a family history of cancer. Both commonalities and striking differences could be observed between GPs and BS from the four participating countries. GPs from France and Germany reported significantly higher proportions taking a family history of cancer including the extended family than GPs from the Netherlands and the UK. Most GPs from France, Germany and the Netherlands stated their willingness for providing risk assessment for an unaffected (high-risk) woman with a family history of breast cancer and the vast majority of BS from all four countries reported that they themselves would provide risk assessment for an unaffected (high-risk) woman with a family history of breast cancer. However, a substantial number of both GPs and BS would not have taken an appropriate family history for their patient failing to take into account the paternal side of the family. GPs from Germany reported a significantly lower readiness to refer a patient with a family history of a BRCA1 mutation for specialist genetic counselling when compared to the GPs from the other countries. GPs and BS from France, Germany and the Netherlands significantly less often assigned practice responsibilities to a genetic specialist as compared to the participating GPs and BS from the UK. The outcome of the study confirms the need for capability building in genetics for non-genetic health professionals. Using genetic risk assessment tools without a full understanding could result in missed opportunities for cancer prevention and harm patients. In order to provide best possible services for high-risk patients presenting with cancer concerns, close collaboration with clinical geneticists should become routine part of mainstream medical practice.

Clinician adherence to a standardized assessment battery across settings and disciplines in a poststroke rehabilitation population.

OBJECTIVES: (1) To examine clinician adherence to a standardized assessment battery across settings (acute hospital, inpatient rehabilitation facilities [IRFs], outpatient facility), professional disciplines (physical therapy [PT], occupational therapy, speech-language pathology), and time of assessment (admission, discharge/monthly), and (2) to evaluate how specific implementation events affected adherence. DESIGN: Retrospective cohort study. SETTING: Acute hospital, IRF, and outpatient facility with approximately 118 clinicians (physical therapists, occupational therapists, speech-language pathologists). PARTICIPANTS: Participants (N=2194) with stroke who were admitted to at least 1 of the above settings. All persons with stroke underwent standardized clinical assessments. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Adherence to Brain Recovery Core assessment battery across settings, professional disciplines, and time. Visual inspections of 17 months of time-series data were conducted to see if the events (eg, staff meetings) increased adherence ≥5% and if so, how long the increase lasted. RESULTS: Median adherence ranged from .52 to .88 across all settings and professional disciplines. Both the acute hospital and the IRF had higher adherence than the outpatient setting (P≤.001), with PT having the highest adherence across all 3 disciplines (P<.004). Of the 25 events conducted across the 17-month period to improve adherence, 10 (40%) resulted in a ≥5% increase in adherence the following month, with 6 services (60%) maintaining their increased level of adherence for at least 1 additional month. CONCLUSIONS: Actual adherence to a standardized assessment battery in clinical practice varied across settings, disciplines, and time. Specific events increased adherence 40% of the time with those gains maintained for >1 month 60% of the time.

Confidence of primary care physicians in their ability to carry out basic medical genetic tasks-a European survey in five countries-Part 1.

Western health care systems are facing today increasing movement of genetic knowledge from research labs into clinical practice. This paper reports the results of a survey that addressed the confidence of primary care physicians in their ability to carry out basic medical genetic tasks. The survey was conducted in five countries (France, Germany, The Netherlands, Sweden and the UK). Stratified random samples were drawn from primary care physicians in the five countries representing a sampling frame of 139,579 physicians. Stepwise binary logistic regression procedures were performed to identify the predictor variables for self-reported confidence. Three thousand six hundred eighty-six physicians participated and filled out a self-administered questionnaire. The margin of error for accurate representation of each group of European general practitioners and specialists in the total sample is 2.9% for GP, 2.8% for obstetricians/gynaecologists (OB/GYN) and for paediatricians (PAED) 2.6% (95% confidence level). Confidence in their ability to carry out basic medical genetic tasks is low among participating primary care physicians: 44.2% are not confident, 36.5% somewhat confident, confident or very confident are 19.3%. In each country, those confident/very confident represent less than 33% of the participating physicians. Primary care physicians who report the lowest levels of confidence prove to be those least exposed to medical genetics information and training. Although there are significant differences in the way in which professional education is organised and practice is regulated across European countries, there is a need for a coordinated European effort to improve primary care physicians' background in medical genetics.

Genetic testing for familial/hereditary breast cancer-comparison of guidelines and recommendations from the UK, France, the Netherlands and Germany.

In this review, the national guidelines and recommendations for genetic testing for familial/hereditary breast cancer from the UK, France, the Netherlands and Germany were evaluated as to the inclusion criteria for genetic testing. In all four countries, access to genetic testing relies basically on the family history of breast and ovarian cancer. Similarities are obvious for most selection criteria. All four guidelines recommend embedding genetic testing within a framework of genetic counselling, and all agree to perform genetic testing first in an affected person. However, there are differences regarding the thresholds based on certain familial constellations, detailed description of selection criteria, the degree of relatedness between affected individuals and the counsellee, the age of diagnosis, the individual history of early onset breast cancer, bilateral breast cancer, the tumour morphology or the access to intensified surveillance. These differences and open questions not covered by the guidelines, e.g. on how to deal with phenocopies, unclassified variants, genetic variants in newly identified breast cancer susceptibility genes or with family constellations not fitting the criteria, are discussed. New evidence is usually slowly integrated into the guidelines. An exchange process towards the harmonization of the guidelines will ensure high quality health care across Europe.

An African experience.

A team from Dorset has forged links with colleagues at Wau Hospital in southern Sudan.

Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial.

OBJECTIVE: To evaluate the effectiveness of offering antenatal screening for sickle cell disease and thalassaemia in primary care as a way of facilitating earlier uptake of screening. DESIGN: Partial factorial cluster randomised controlled trial. SETTING: 25 UK general practices from deprived inner city areas. PARTICIPANTS: Anonymised data on all pregnant women attending participating practices during a six month period before randomisation and a seven month period after randomisation. This included 1708 eligible women. INTERVENTION: Practices were randomised to three groups for seven months: parallel testing in general practice (tests for sickle cell disease and thalassaemia offered to both parents when pregnancy was first reported); sequential testing in general practice (tests offered to mothers when pregnancy was first reported, and subsequently to the partners of women who were found to be carriers); and midwife care (tests offered to mothers at first consultation with a midwife). MAIN OUTCOME MEASURES: The primary outcome (available for all women) was the proportion of eligible women screened before 10 weeks' (70 days') gestation. Secondary outcomes were an offer of screening to women before 10 weeks' gestation, gestational age at testing, mean interval from first visit to the general practice visit to screening, and women's knowledge of the carrier status of their baby's father before 77 days' (11 weeks') gestation. The study was designed to detect a 20% absolute increase in screening uptake. Cluster level analyses were adjusted for age group, parity, ethnic group, primary care organisation, and number of general practitioners per practice. RESULTS: Data were analysed for 1708 eligible women. In the midwife care arm, 2% (9/441) of women were screened before 10 weeks' gestation compared with 24% (161/677) in the GP parallel testing arm and 28% (167/590) in the GP sequential testing arm. The estimated adjusted difference between the midwife care and GP parallel testing arms was 16.5% (95% confidence interval 7.1% to 25.8%; P=0.002) and between the midwife care and GP sequential testing arms was 27.8% (14.8% to 40.7%; P<0.001). By 26 weeks' gestation the proportion of women screened across the three trial arms was similar (81%). The proportion of women who knew the carrier status of the baby's father by 11 weeks' gestation was 0% (0/441) in the midwife care arm, 2% (13/677) in the GP parallel testing arm (P=0.003), and 1% (3/590) in the GP sequential testing arm (P=0.374). CONCLUSION: Offering antenatal screening for sickle cell disease and thalassaemia as part of consultations for pregnancy confirmation in primary care increases the proportion of women screened before 10 weeks' gestation. Even with intervention, however, only a minority of women were screened before 10 weeks. Additional interventions should be considered to achieve testing early in pregnancy for most women wanting such tests so that couples with affected pregnancies have less time pressure to choose options, which may include termination of the pregnancy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN00677850.

General practitioner management of genetic aspects of a cardiac disease: a scenario-based study to anticipate providers' practices.

It is increasingly recognised that genetics will have to be integrated into all parts of primary health care. Previous research has demonstrated that involvement and confidence in genetics varies amongst primary care providers. We aimed to analyse perceptions of primary care providers regarding responsibility for genetic tasks and factors affecting those perceptions. Postal questionnaire including a hypothetical case management scenario of a cardiac condition with a genetic component was sent to random samples of medically qualified general practitioners in France, Germany, Netherlands, Sweden and UK (n = 1,168). Logistic regression analysis of factors affecting primary care practitioners' willingness to carry out genetic tasks themselves was conducted; 61% would take a family history themselves but only 38% would explain an inheritance pattern and 16% would order a genetic test. In multivariate analysis, only the country of practice was consistently predictive of willingness to carry out genetic tasks, although male gender predicted willingness to carry out the majority of tasks studied. The stage of career at which education in genetics had been provided was not predictive of willingness to carry out any of the tasks analysed. Country of practice is significantly predictive of attitudes towards genetics in primary care practice and therefore genetic education structure and content in Europe will need to be significantly tailored towards country-specific approaches.

Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden.

OBJECTIVE: to investigate whether practising midwives are adequately prepared to integrate genetic information into their practice. DESIGN: a cross-sectional, postal, structured questionnaire survey was sent to practising midwives. SETTING: practising midwives from the Netherlands (NL), Sweden (SE) and the United Kingdom (UK). PARTICIPANTS: 1021 replies were received, achieving a response rate of 62%. FINDINGS: 79% (799/1015) of midwives reported attending courses with some 'genetic content' during their initial training. Sixty-eight per cent (533/784) judged this to have been useful for clinical practice. Variation was seen between countries in the amount of genetic content in post-registration training (SE 87%, NL 44%, UK 17%) and most was considered useful. Questions assessing clinical activity identified a current need for genetic knowledge. Midwives described low levels of self-reported confidence both in overtly genetic procedures and in everyday tasks that were underpinned by genetic knowledge. For eight of the 12 procedures, fewer than 20% of midwives considered themselves to be confident. Differences were apparent between countries. Midwives identified psychosocial, screening and risk assessment aspects of genetic education as being important to them, rather than technical aspects or genetic science. CONCLUSIONS: given the low reported confidence with genetic issues in clinical practice, it is essential that this is addressed in terms of the amount, content and targeting of genetic education. This is especially important to ensure the success of national antenatal and baby screening programmes. The results of this study suggest that midwives would welcome further training in genetics, addressing genetic topics most relevant to their clinical practice.

Maximising recruitment and retention of general practices in clinical trials: a case study.

BACKGROUND: There is limited evidence regarding the factors that facilitate recruitment and retention of general practices in clinical trials. It is therefore pertinent to consider the factors that facilitate research in primary care. AIM: To formulate hypotheses about effective ways of recruiting and retaining practices to clinical trials, based on a case study. DESIGN OF STUDY: Case study of practice recruitment and retention to a trial of delivering antenatal sickle cell and thalassaemia screening. SETTING: Two UK primary care trusts with 123 practices, with a high incidence of sickle cell and thalassaemia, and high levels of social deprivation. METHOD: Practices were invited to take part in the trial using a research information sheet for practices. Invitations were sent to all practice managers, GPs, practice nurses, and nurse practitioners. Expenses of approximately pound 3000 per practice were available. Practices and the research team signed research activity agreements, detailing a payment schedule based on deliverables. Semi-structured interviews were completed with 20 GPs who participated in the trial. Outcome measures were the number of practices recruited to, and completing, the trial. RESULTS: Four practices did not agree to randomisation and were excluded. Of 119 eligible practices, 29 expressed an interest in participation. Two practices withdrew from the trial and 27 participated (two hosted pilot studies and 25 completed the trial), giving a retention rate of 93% (27/29). The 27 participating practices did not differ from non-participating practices in list size, number of GPs, social deprivation, or minority ethnic group composition of the practice population. CONCLUSION: Three factors appeared important in recruiting practices: research topic, invitation method, and interest in research. Three factors appeared important in retaining practices: good communication, easy data-collection methods, and payment upon meeting pre-agreed targets. The effectiveness of these factors at facilitating recruitment and retention requires assessment in experimental studies.

Assessing educational priorities in genetics for general practitioners and specialists in five countries: factor structure of the Genetic-Educational Priorities (Gen-EP) scale.

PURPOSE: A scale assessing primary care physicians' priorities for genetic education (The Gen-EP scale) was developed and tested in five European countries. The objective of this study was to determine its factor structure, to test scaling assumptions and to determine internal consistency. METHODS: The sample consisted of 3686 practitioners (general practitioners, gyneco-obstetricians, pediatricians) sampled in France, Germany, the Netherlands, Sweden, and United Kingdom. We first determined the factor structure of the Gen-EP scale (30 items) on the whole sample. Scaling assumptions were then tested on each country using multitrait scaling analysis. Internal consistency was assessed across the five countries. RESULTS: Six factors were identified accounting for 63.3% of the variance of the items. They represented the following priorities for genetic education: "Genetics of Common Diseases"; "Ethical, Legal, and Public Health Issues"; "Approaching Genetic Risk Assessment in Clinical Practice"; "Basic Genetics and Congenital Malformations"; "Techniques and Innovation in Genetics" and "Psychosocial and Counseling Issues." In each country, convergent and discriminant validity were satisfactory. Internal-consistency reliability coefficients (Cronbach's alpha) were all above the acceptable threshold (0.70). CONCLUSION: The Gen-EP scale could be a helpful instrument in different countries to organize and evaluate the impact of genetic educational programs for primary care providers.

Genetics in clinical practice: general practitioners' educational priorities in European countries.

PURPOSE: To assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics. METHODS: Cross-sectional survey, random and total samples of GPs in five European countries (France, Germany, the Netherlands, Sweden, and United Kingdom), mailed questionnaires; OUTCOME: Genetic Educational Priority Scale (30 items; six subscores). RESULTS: A total 1168 GPs answered. Priorities differed (P < 0.001) but were consistently ranked across the countries. Previous education had a marginal effect on priorities. Women gave higher priorities than men to Genetics of Common Disorders (adjusted odds ratio [OR adj], 2.5; 95% confidence interval [CI], 1.6-3.8), Psychosocial and Counseling Issues (OR adj, 1.6; 95% CI, 1.1-2.5), and Ethical, Legal, and Public Health Issues (OR adj, 1.3; 95% CI, 1.1-1.8), but lower than men to Techniques and Innovation in Genetics (OR adj, 0.7; 95% CI, 0.5-0.9). Older physicians gave higher priorities to Basic Genetics and Congenital Malformations (OR adj, 1.5; 95% CI, 1.1-1.9), and to Techniques and Innovation in Genetics (OR adj: 1.3; 95% CI, 1.0-1.7), compared with their younger colleagues. CONCLUSIONS: Expressed genetic educational needs vary according to the countries and sociodemographics. In accordance, training could be more focused on genetics of common disorders and on how to approach genetic risk in clinical practice rather than on ethics, new technologies, or basic concepts.