Swedish Centres Research Articles

Outcome After Endovascular Repair of Ruptured Thoracic Aortic Aneurysm: A National Multicenter Study

Introduction - Ruptured descending thoracic aortic aneurysm (rDTAA) is an acute condition with high mortality requiring urgent treatment. The purpose of this multicenter study was to analyze the outcome of thoracic endovascular aortic repair (TEVAR) in patients with rDTAA. Methods - This is a nationwide retrospective study including all patients who underwent TEVAR for rDTAA at six major vascular university centers in Sweden between January 2000 and December 2015. Data from local hospital records and the Swedish vascular registry at the participating centres were reviewed. Outcome measures were analysed using Kaplan-Meier estimator and multivariable Cox-regression. Results - There were 140 patients (mean age 74.1±SD 8.8 [range: 34-91] years; 56% men), with rDTAA. The mean descending aortic aneurysm size was 64.8±19 mm. Hemothorax was present in 64% (89/139) of patients at admission. The median stent graft length was 218 mm (range: 30-800 mm) and the median number of stentgrafts used was 2.0 (range: 1-6). In 53 patients (37.9%), the left subclavian artery was covered to extend the proximal landing zone. Twenty-five patients (17.9%) required proximal revascularization; chimney left carotid artery (n=14), chimney left subclavian artery (n=7), carotid-carotid-subclavian bypass (n=2), and left carotid-subclavian bypass (n=2). The celiac trunc was covered in 15 cases (10.7%) to achieve adequate distal landing zone. A chimney was placed in the SMA in six cases (4.3%) and in the celiac trunc in one case (0.7%). In two patients a multi branched stent graft was used. In total, 61/136 patients (45%) had a major complication within 30-day post TEVAR. Stroke (n=20; 14.7 %) was the most common complication followed by paraplegia (n=13; 9.6%) and major bleeding (n=13; 9.6 %). There were no association between stent graft length or subclavian coverage and paraplegia (OR 1.00, 95% CI 0.998-1.01; P=0.32, and OR 0.56, 95% CI 0.14-2.31; P=0.42; respectively) or subclavian coverage and stroke (OR 1.40, 95% CI 0.46-4.31; P=0.56). Reinterventions were required in 27/137 patients (19.7%). Postoperative bleeding was the only major complication associated with reintervention (OR 3.39, 95% CI 1.05-11.0; P=0.042). Median follow-up time was 18.5 months (range: 0-132 months). The Kaplan-Meier estimated survival was 79.1% at 1 month, 70.8% at 3 months, 64.5% at 1 year, 45.0% at 3 years, and 30.9% at 5 years. Age (HR 1.04; 95 % CI 1.00-1.07; P=0.044), previous stroke (HR 2.31; 95 % CI 1.17-4.55; P=0.016), previous aortic surgery (HR 2.17; 95 % CI 1.18-3.99; P=0.012) as well as postoperative major bleeding (HR 4.29; 95 % CI 2.14-8.60; P=0.001), postoperative stroke (HR 2.73; 95 % CI 1.43-5.22; P=0.002), and renal failure (HR 7.82; 95 % CI 2.53-24.19; P=0.001) were all associated with mortality. Conclusion - This nationwide multicenter study of patients with rDTAA undergoing TEVAR showed acceptable short-term survival but the long-term survival is rather poor. The postoperative complication rate is high and reinterventions are required in one fifth of patients. Patient selection and optimization are of utmost importance to improve outcome.

Tumor and nodal staging of colon cancer: accuracy of preoperative computed tomography at a Swedish high-volume center.

BackgroundWhen deciding treatment options for patients with colon cancer, accurate staging is required. In Sweden, the main preoperative evaluation modality to determine tumor and nodal stage is computed tomography (CT).PurposeThe aim of this study was to investigate how well the preoperative (CT-determined) clinical tumor and nodal stage (cTN) correlated with the postoperative histopathological stage (pTN). Another aim was to validate the tumor and nodal stage data in the Swedish Colorectal Cancer Registry (SCRCR).Material and MethodsThe SCRCR was used to identify patients with colon cancer, treated at a Swedish high-volume center during 2013–2016 (n = 974). Data were gathered from medical records regarding cTN and pTN stage, and predefined patient and tumor variables. The agreement between cTN and pTN was analyzed using kappa statistics.ResultsAfter excluding patients with either pre- or postoperative TN stage missing, 383 patients remained for further analyses. The analyses showed an agreement between cT and pT of κ: 0.27 and between cN and pN of κ: 0.21 (fair agreement). When comparing tumors with low (T1–3; N0) versus high risk (T4; N1–2), the kappa value was 0.19 (slight agreement). When comparing the SCRCR to medical records, 78% of completely staged tumors had been correctly reported.ConclusionThe agreement between cTN and pTN was low in this study population, indicating a need for enhanced precision of the preoperative staging process. A high frequency of erroneous preoperative staging data in the SCRCR shows the need for further efforts of ensuring correct data transfers into the registry.

Follow-Up after Endovascular Aortic Repair can be Stratified Based on First Postoperative Imaging

Introduction - Endovascular aortic aneurysm repair (EVAR) is now a day the standard method for treating abdominal aortic aneurysm (AAA). Surveillance to detect complications after EVAR, results in increasing costs, workload and patient dissatisfaction. We hypothesised that follow-up can be stratified based on the first postoperative computed tomography (CT). Methods - All EVAR-patients 2001-2012 in two Swedish centers were identified retrospectively. Patients were categorised based on the first postoperative CT into Low Risk (LR): proximal and distal sealing zone >=10mm and no endoleak, and High Risk (HR): sealing zone <10mm proximally or distally and/or presence of any endoleak. Follow-up imaging, AAA-related adverse events and re-interventions were registered. Logistic regression analysis was performed to assess predictors of AAA-related adverse events and AAA- related reinterventions; results are presented as the Odds ratio (OR) with 95% confidence interval (CI). Survival was analysed using the Kaplan-Meier method. Results - A total of 481 EVAR patients were identified, of which 347 (288 men) with a CT <1-year post-EVAR were included (LR n=224, HR n=123). There was no difference between the groups in gender, age, comorbidities, AAA-diameter, AAA-neck anatomy, stentgraft type or follow-up (median 4.7 years, range 0-14 years). In the HR group, 51% had short seal, and 67% endoleaks (50% type-II). Five-years freedom from AAA-related adverse events was LR 97%, HR 48%, p<0.001, and freedom from AAA-related re-intervention LR 97.5%, HR 53.5%, p<0.001. In a multivariable analysis, short sealing zone distally (Odds Ratio OR 62.642), proximally (OR 23.300) and type II endoleak (OR 9.235) were predictors for AAA-related adverse events, (p<0.001). The number of surveillance imaging per AAA-related adverse event was 176 in LR, versus 11 in HR during follow-up period. Conclusion - A majority of EVAR-patients have adequate seal and no endoleak on first postoperative CT, which is associated with a low risk for AAA-related events up to 5-years. These patients can safely be stratified to less vigilant follow-up early post-EVAR.

Asthma and treatment with inhaled corticosteroids: associations with hospitalisations with pneumonia

BackgroundPneumonia is an important cause of morbidity and mortality. COPD patients using inhaled corticosteroids (ICS) have an increased risk of pneumonia, but less is known about whether ICS treatment in asthma also increases the risk of pneumonia. The aim of this analysis was to examine risk factors for hospitalisations with pneumonia in a general population sample with special emphasis on asthma and the use of ICS in asthmatics.MethodsIn 1999 to 2000, 7340 subjects aged 28 to 54 years from three Swedish centres completed a brief health questionnaire. This was linked to information on hospitalisations with pneumonia from 2000 to 2010 and treatment with ICS from 2005 to 2010 held within the Swedish National Patient Register and the Swedish Prescribed Drug Register.ResultsParticipants with asthma (n = 587) were more likely to be hospitalised with pneumonia than participants without asthma (Hazard Ratio (HR 3.35 (1.97–5.02)). Other risk factors for pneumonia were smoking (HR 1.93 (1.22–3.06)), BMI < 20 kg/m2 (HR 2.74 (1.41–5.36)) or BMI > 30 kg/m2 (HR 2.54 (1.39–4.67)). Asthmatics (n = 586) taking continuous treatment with fluticasone propionate were at an increased risk of being hospitalized with pneumonia (incidence risk ratio (IRR) 7.92 (2.32–27.0) compared to asthmatics that had not used fluticasone propionate, whereas no significant association was found with the use of budesonide (IRR 1.23 (0.36–4.20)).ConclusionHaving asthma is associated with a three times higher risk of being hospitalised for pneumonia. This analysis also indicates that there are intraclass differences between ICS compounds with respect to pneumonia risk, with an increased risk of pneumonia related to fluticasone propionate.

Fewer tumour draining sentinel nodes in patients with progressing muscle invasive bladder cancer, after neoadjuvant chemotherapy and radical cystectomy

PurposeTo examine the relationship between the number of tumour draining sentinel nodes (SNs) and pathoanatomical outcomes, in muscle-invasive bladder cancer (MIBC), in patients undergoing neoadjuvant chemotherapy (NAC) and radical cystectomy (RC).Materials and MethodsIn an ongoing prospective multicenter study, we included 230 patients with suspected urothelial MIBC from ten Swedish urological centers. All underwent TURb and clinical staging. From the cohort, 116 patients with urothelial MIBC; cT2-cT4aN0M0, underwent radical cystectomy (RC) and lymphadenectomy with SN-detection (SNd). 83 patients received cisplatin-based NAC and 33 were NAC-naïve. The number and locations of detected SNs and non-SNs were recorded for each patient. The NAC treated patients were categorized by pathoanatomical outcomes post-RC into three groups: complete responders (CR), stable disease (SD) and progressive disease (PD). Selected covariates with possible impact on SN-yield were tested in uni -and multivariate analyses for NAC-treated patients only.ResultsIn NAC treated patients, the mean number of SNs was significantly higher in CR patients (3.3) and SD patients (3.6) compared with PD patients (1.4) (p = 0.034). In a linear multivariate regression model, the number of harvested nodes was the only independent variable that affected the number of SNs (p = 0.0004).ConclusionsThe number of tumor-draining SNs in NAC-treated patients was significantly lower in patients with progressive disease.

Scandcleft Project Trial 2-Comparison of Speech Outcome in 1- and 2-Stage Palatal Closure in 5-Year-Olds With UCLP.

To investigate in-depth speech results in the Scandcleft Trial 2 with comparisons between surgical protocols and centers and with benchmarks from peers without cleft palate. A prospective randomized clinical trial. Two Swedish and one Finnish Cleft Palate center. One hundred twelve participants were 5-years-old born with unilateral cleft lip and palate randomized to either lip repair and soft palate closure at 4 months and hard palate closure at 12 months or lip repair at 3 to 4 months (Arm A), or a closure of both the soft and hard palate at 12 months (Arm C). A composite measure dichotomized into velopharyngeal competency (VPC) or velopharyngeal incompetency (VPI), overall assessment of velopharyngeal function (VPC-Rate), percentage of consonants correct (PCC score), and consonant errors. In addition, number of speech therapy visits, average hearing thresholds, and secondary surgeries were documented to assess burden of treatment. Across the trial, 53.5% demonstrated VPC and 46.5% VPI with no significant differences between arms or centers. In total, 27% reached age-appropriate PCC scores with no statistically significant difference between the arms. The Finnish center had significantly higher PCC scores, the Swedish centers had higher percentages of oral consonant errors. Number of speech therapy visits was significantly higher in the Finnish center. At age 5, poor speech outcomes with some differences between participating centers were seen but could not be attributed to surgical protocol. As one center had very few participants, the results from that center should be interpreted with caution.

The increased risk for thromboembolism pre-cystectomy in patients undergoing neoadjuvant chemotherapy for muscle-invasive urinary bladder cancer is mainly due to central venous access: a multicenter evaluation

PurposeTo investigate if patients receiving neoadjuvant chemotherapy (NAC) for muscle-invasive bladder cancer (MIBC) had an increased risk of thromboembolic events (TEE) and to evaluate when these events occur on a timeline starting from 6 months pre-cystectomy, during NAC-administration and 60 months post-cystectomy.MethodsTwo hundred and fifty five patients undergoing radical cystectomy during 2009–2014 at three Swedish cystectomy centers (Umeå, Linköping and Sundsvall) were in-detail reviewed retrospectively, using individual medical records. One hundred and twenty nine patients were ineligible for analysis. NAC patients (n = 67) were compared to NAC-naïve NAC-eligible patients (n = 59). The occurrence of TEE was divided into different periods pre-cystectomy and post-cystectomy. Statistical analyses included Chi-squared and logistical regression tests.ResultsSignificant associations were found between receiving NAC and acquiring a TEE during NAC therapy pre-cystectomy. All but one pre-cystectomy event was venous and all but one of the patients received NAC. 31% (14/45) of TEEs occurred pre-cystectomy. The incidence of TEEs pre-cystectomy in NAC-naive NAC-eligible patients was only 10% (2/20), whereas the incidence of TEEs in NAC patients occurred pre-cystectomy in 48% (12/25) and 11/12 incidents were detected during NAC therapy—this including 7/11 (64%) incidents affecting veins in anatomical conjunction with the placement of central venous access for chemotherapy administration.ConclusionsThere is a significantly increased risk for TEE pre-cystectomy during chemotherapy administration in MIBC patients receiving NAC, compared to the risk in NAC-naïve NAC-eligible MIBC patients. In 64% of the pre-RC TEEs in NAC patients, there was a clinical connection to placement of central venous access.

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents

PurposeVACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents.MethodsPatients aged 8–17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015–2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples.ResultsThe questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children’s HRQoL and psychological well-being were identified. The parents’ self-reports of anxiety and depression were comparable to non-clinical samples.ConclusionsAlthough children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.

Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care.

BackgroundChildren’s participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated.ObjectiveThe aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals’ perspectives.MethodsA process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents.ResultsTo our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children’s participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals’ beliefs in the usefulness and usability of the solution, and health care professionals’ willingness to change their professional roles guided by the solution.ConclusionsThe results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children’s participation.

Planting a seed - child health care nurses\u2019 perceptions of speaking to parents about overweight and obesity: a qualitative study within the STOP project

BackgroundNurses in child health care (CHC) centers in Sweden play a key role in the early detection and management of childhood overweight/obesity, through meeting families early, regularly and over many years. However, research focusing on CHC nurses’ perceptions of their role in childhood overweight/obesity management is scarce. As part of the EU-funded project “Science and Technology in childhood Obesity Policy” (STOP), this study examines CHC nurses’ perceptions of speaking to parents about children’s overweight/obesity and of their role in referring children to treatment for overweight/obesity.MethodsAll registered CHC nurses in Stockholm County (n = 442) received an email invitation letter explaining the study. Individual face-to-face visits (n = 15) in selected centers, and phone calls (n = 24) to nurses working in these centres were also conducted. In total, 17 CHC nurses (all female, average work experience 6.7 years (SD ± 4.9 years)) from 10 municipalities (including four of the top five municipalities with the highest prevalence of overweight and obesity) in Stockholm County were interviewed. The interviews were conducted by phone, transcribed and analyzed using thematic analysis.ResultsTwo main themes were developed through the analysis: 1) The relationship between the nurse and the parent and 2) Glitch in the system. Under the first theme, nurses reported that weight-related discussions were facilitated by building and maintaining trust with parents. However, nurses also said they were reluctant to address children’s weights if this could compromise parents’ trust. Under the second theme, nurses highlighted several organizational barriers to addressing a child’s weight with parents, including insufficient cooperation with other healthcare providers and limited time for visits. Nurses also identified lack of sufficient knowledge about what to offer the family and lack of confidence in their communication skills as additional barriers.ConclusionsWe found that pediatric nurses perceive relational and organizational factors as barriers to address childhood obesity with parents. To improve care, it is necessary to provide nurses with continuing education about obesity and communication skills and organizational support to improve communication within the healthcare system.Trial registrationClinicalTrials.gov NCT03800823; 11 Jan 2019, prospectively registered.

Vesicourethral Anastomotic Stenosis After Open or Robot-assisted Laparoscopic Retropubic Prostatectomy—Results from the Laparoscopic Prostatectomy Robot Open Trial

BackgroundVesicourethral anastomotic stenosis is a well-known late complication after open radical retropubic prostatectomy (RRP) with previously reported incidences of 2.7–15%. There are few reports of the incidence after robot-assisted laparoscopic radical prostatectomy (RALP) compared with RRP. ObjectiveThe aim was to compare the risk of developing symptomatic stenosis after RRP and RALP, and to explore potential risk factors and the influence of stenosis on the risk of urinary incontinence. Design, setting, and participantsBetween 2008 and 2011, 4003 men were included in a prospective trial comparing RRP and RALP at 14 Swedish centres. Clinical data and patient questionnaires were collected before, during, and after surgery. Outcome measurements and statistical analysisStenosis was identified by either patients’ reports in questionnaires or case report forms. The primary endpoint is reported as unadjusted as well as adjusted relative risks (RRs), calculated with log-binomial regression models. Data on incontinence were analysed by means of a log-binomial regression model, with stenosis as an independent and incontinence as a dependent variable. Results and limitationsSymptomatic stenosis developed in 1.9% of 3706 evaluable men within 24 mo. The risk was 2.2 times higher after RRP than after RALP (RR 2.21, 95% confidence interval [CI] 1.38–3.53). Overall, urinary incontinence was twice as common in patients who had stenosis (RR 2.01, 95% CI 1.43–2.64). ConclusionsThis large prospective study found an overall low rate of vesicourethral anastomotic stenosis after radical prostatectomy, but the rate was significantly lower after robot-assisted prostatectomy. The risk of stenosis seems to be associated with the number of sutures/takes in the anastomosis, but this was statistically significant only in the RALP group. Patient summaryWe investigated the risk of developing vesicourethral anastomotic stenosis after open and robot-assisted radical prostatectomy. We found that the risk was generally lower than previously reported and lower after robot-assisted radical prostatectomy than after radical retropubic prostatectomy. Urinary incontinence was twice as common in patients with stenosis.

Association of Bariatric Surgery With Skin Cancer Incidence in Adults With Obesity

Obesity is a cancer risk factor, and bariatric surgery in patients with obesity is associated with reduced cancer risk. However, evidence of an association among obesity, bariatric surgery, and skin cancer, including melanoma, is limited. To investigate the association of bariatric surgery with skin cancer (squamous cell carcinoma and melanoma) and melanoma incidence. This nonrandomized controlled trial, the Swedish Obese Subjects (SOS) study, is ongoing at 25 surgical departments and 480 primary health care centers in Sweden and was designed to examine outcomes after bariatric surgery. The study included 2007 patients with obesity who underwent bariatric surgery and 2040 contemporaneously matched controls who received conventional obesity treatment. Patients were enrolled between September 1, 1987, and January 31, 2001. Data analysis was performed from June 29, 2018, to November 22, 2018. Patients in the surgery group underwent gastric bypass (n = 266), banding (n = 376), or vertical banded gastroplasty (n = 1365). The control group (n = 2040) received the customary treatment for obesity at their primary health care centers. The SOS study was cross-linked to the Swedish National Cancer Registry, the Cause of Death Registry, and the Registry of the Total Population for data on cancer incidence, death, and emigration. The study included 4047 participants (mean [SD] age, 47.9 [6.1] years; 2867 [70.8%] female). Information on cancer events was available for 4042 patients. The study found that bariatric surgery was associated with a markedly reduced risk of melanoma (adjusted subhazard ratio, 0.43; 95% CI, 0.21-0.87; P = .02; median follow-up, 18.1 years) and risk of skin cancer in general (adjusted subhazard ratio, 0.59; 95% CI, 0.35-0.99; P = .047). The skin cancer risk reduction was not associated with baseline body mass index or weight; insulin, glucose, lipid, and creatinine levels; diabetes; blood pressure; alcohol intake; or smoking. The results of this study suggest that bariatric surgery in individuals with obesity is associated with a reduced risk of skin cancer, including melanoma. ClinicalTrials.gov identifier: NCT01479452.

Probiotic treatment using a mix of three Lactobacillus strains for lumbar spine bone loss in postmenopausal women: a randomised, double-blind, placebo-controlled, multicentre trial.

Postmenopausal bone loss in the spine is associated with an increased risk of vertebral fractures. Certain probiotic treatment protects rodents from ovariectomy-induced bone loss. The aim of the present study was to determine if treatment with a combination of three bacterial strains protects against the rapid spine bone loss occurring in healthy early postmenopausal women. This randomised, double-blind, placebo-controlled, multicentre trial was done at four study centres in Sweden. Early postmenopausal women were randomly assigned in a 1:1 ratio to receive probiotic treatment consisting of three Lactobacillus strains (Lactobacillus paracasei DSM 13434, Lactobacillus plantarum DSM 15312, and Lactobacillus plantarum DSM 15313; 1 x 1010 colony-forming units per capsule) or placebo once daily for 12 months. The primary outcome was the percentage change from baseline in lumbar spine bone mineral density (LS-BMD) at 12 months. The primary analysis was done in all participants with BMD measurements available both at baseline and at 12 months. Analyses of adverse events and safety included all participants who had taken at least one capsule of placebo or Lactobacillus. This trial is registered with ClinicalTrials.gov, NCT02722980, and is completed. Between April 18 and Nov 11, 2016, 249 participants were randomly assigned to receive probiotic product or placebo, and 234 (94%) completed the analyses required for the primary outcome. Lactobacillus treatment reduced the LS-BMD loss compared with placebo (mean difference 0·71%, 95% CI 0·06 to 1·35). The LS-BMD loss was significant in the placebo group (-0·72%, -1·22 to -0·22), whereas no bone loss was observed in the Lactobacillus-treated group (-0·01%, -0·50 to 0·48). The adverse events were similar between the two groups. Probiotic treatment using a mix of three Lactobacillus strains protects against lumbar spine bone loss in healthy postmenopausal women. Probi.

Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology.

To explore Swedish healthcare professionals' (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions. In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method. The participants' main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants' struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust. The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP-related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long-term risk of developing professional moral distress.

Telenurses' experiences of monitoring calls to parents of children with gastroenteritis.

To describe telenurses' experiences of monitoring calls in telephone advice nursing to parents of children with gastroenteritis. In previous studies, making monitoring calls is mentioned as a method used by telenurses to assess the need for care. MonitoringTHE terms 'care-seekers', 'care-seeker' and 'careseekers' are used inconsistently in the article. Please suggest which one to follow. We suggestCare-seeker calls in telephone advice nursing have been described as when telenurses call care-seekers back once or twice after an initial call. Calls from parents of children with gastroenteritis are common, and many of these calls result in telenurses providing self-care advice. Nineteen telenurses from two healthcare call centres in Sweden were interviewed. Data were analysed using inductive qualitative content analysis. One main category, four generic categories and eleven sub-categories emerged. The telenurses described how working with monitoring calls aimed to provide self-care at home in a patient-safe way. Their focus on the parents aimed at increasing their feeling of security and focus on the child aimed at ensuring patient safety. Monitoring calls also provided a learning opportunity for parents and telenurses, and the possibility of relieving pressure on healthcare services. The findings indicate that the use of monitoring calls aims to provide a patient-safe form of telephone advice nursing. This study shows that many parents feel insecure when their child has gastroenteritis, and the use of monitoring calls may be an effective approach to help them feel more secure at home with their sick child.

Validation of reported dentoalveolar relationships in the Swedish Quality Registry for Cleft Lip and Palate

The present study validated data that had been reported to the Swedish Quality Registry for Cleft Lip and Palate (CLP) under new requirements from 2016, when use of the 5-year-old (5YO) and the Modified Huddart and Bodenham (MHB) indices for rating occlusion in children born with unilateral CLP (UCLP) was introduced. The sample included blinded study casts (n = 97) and photos (n = 4) of 5-year-old children who had been born with UCLP in 2009-2011 and were enrolled at one of six cleft centres in Sweden. Fourteen orthodontists from the centres assessed the patients (n = 101) using the 5YO and the MHB indices. Median 5YO and MHB scores of the 14 assessments were compared with original registry data (n = 61). Each centre devised code keys to protect the identities of their patients in the registry. Interrater agreement among the 14 orthodontists was good for the 5YO index (quadratic-weighted kappa: 0.72-0.92) and the MHB index (intraclass correlation coefficient: 0.991-0.994). Comparisons of median 5YOs for each identifiable child with their registry data (n = 61) found total agreement for 70.5 per cent. Comparisons between median MHBs and registry data showed very good or good agreement in 93.4 per cent of the cases. Two teams lost their code keys, which reduced the sample to 61 patients. The dentoalveolar outcome data in the CLP registry was trustworthy. There was good agreement among the Swedish cleft teams assessing the 5YO and MHB indices in children born with UCLP at age 5 years.

Penicillin V four times daily for five days versus three times daily for 10 days in patients with pharyngotonsillitis caused by group A streptococci: randomised controlled, open label, non-inferiority study

ObjectiveTo determine whether total exposure to penicillin V can be reduced while maintaining adequate clinical efficacy when treating pharyngotonsillitis caused by group A streptococci.DesignOpen label, randomised controlled non-inferiority study.Setting17 primary...

COPD patients need more information about self-management: a cross-sectional study in Swedish primary care

Objective: In Sweden, patients with chronic conditions, such as chronic obstructive pulmonary disease (COPD), often receive education at specialized nurse-led clinics at primary health care centers (PHCCs). Identifying patients’ needs for information about COPD is the key to individualized care. This study aimed to assess self-reported needs for information about COPD in primary care patients with either moderate (GOLD 2) or severe (GOLD 3) COPD and identify patient characteristics and exacerbation patterns associated with the findings.Design: A cross-sectional study.Setting: Twenty-four PHCCs in Stockholm, Sweden.Subjects: Randomly selected primary care patients with COPD in GOLD stages 2 and 3 (n = 542).Main outcome measures: The Lung Information Needs Questionnaire (LINQ) was used to assess perceived information needs. Spirometry results and descriptive, self-reported data on patient factors such as exacerbation history, treatment, smoking, weight/height, comorbidities, health care contacts, education and symptoms were collected.Results: Overall, the greatest reported needs were for information about self-management and diet. GOLD 2 patients (68%) expressed greater needs for information than GOLD 3 patients (32%). We found significant associations between high information needs and patient-related factors such as ‘No assigned GP’ (OR = 4.32 [95% CI 2.65–7.05]) and ‘No contact with COPD nurse in the past 12 months’ (OR = 1.83 [95% CI 1.19–2.81]).Conclusion: COPD patients felt they knew too little about self-management of their disease. Low information needs were strongly associated with continuity in patient-GP consultations and moderately associated with contact with a COPD nurse. These associations were strongest in patients with moderate COPD.Key points: As patients with COPD often have multimorbidity, identifying patients’ needs for information about COPD is essential to providing individualized patient education and care. In this study of 542 patients from 24 Swedish primary care centers, we found that:Patients with COPD, particularly those with moderate airflow limitation (i.e. GOLD 2) felt they needed more information about COPD than currently provided by health care professionals in primary care.Low information needs were strongly associated with continuity in patient-GP consultations and moderately associated with contact with a COPD nurse. GPs’ part in COPD patient education should not be overlooked, as individualized COPD care relies on GPs’ expertise in managing patients with multimorbidity.

P847Performance of the GRACE score in patients with type 1 and type 2 myocardial infarction

Abstract Introduction The Global Registry of Acute Coronary Events (GRACE) score is a widely used risk stratification tool in the evaluation of patients with myocardial infarction. However, the performance of GRACE in patients with myocardial infarction secondary to oxygen supply-demand imbalance in the absence of atherothrombosis (type 2 myocardial infarction), is uncertain. Outcomes in patients with type 2 myocardial infarction are poor, and a risk stratification tool is urgently required. Methods We assessed the GRACE score in two cohorts of consecutive patients presenting to the Emergency Department with suspected acute coronary syndrome. One cohort was recruited as part of a stepped wedge cluster randomised controlled trial across ten hospitals in Scotland, and one cohort from a large tertiary centre in Sweden. All diagnoses were adjudicated according to the Fourth Universal Definition. We applied the GRACE 2.0 algorithm to estimate death at one year. We assessed model discrimination using the area under the receiver-operator-curve (AUC), and compared AUC between type 1 and type 2 myocardial infarction using the DeLong test. Calibration was assessed using the Hosmer-Lemeshow (HL) goodness of fit test. Results We identified 2,538 and 1,080 patients with type 1 myocardial infarction from the Scottish and Swedish cohorts, with death from any cause occurring in 378 (14.9%) and 112 (10.4%) patients, respectively. The AUC for the GRACE score was 0.843 (0.823–0.864) and 0.848 (0.810–0.886). There were 642 and 247 patients with type 2 myocardial infarction in the Scottish and Swedish cohorts, respectively, with death occurring in 144 (22.4%) and 57 (23.1%) patients. The AUC was 0.708 (0.662–0.754) and 0.733 (0.657–0.808), (P&lt;0.001 for both compared to type 1 myocardial infarction). The results of the HL Test suggest that the calibration of the GRACE 2.0 score needs further improvement (Table). Evaluation of GRACE 2.0 algorithm Type 1 Myocardial Infarction Type 2 Myocardial Infarction Scotland (n=2,538) Sweden (n=1,080) Scotland (n=642) Sweden (n=247) Deaths 378 (14.9%) 112 (10.4%) 144 (22.4%) 57 (23.0%) AUC (C-statistic) 0.843 (0.823–0.864) 0.848 (0.810–0.886) 0.708 (0.662–0.754) 0.733 (0.657–0.808) P-value for HL &lt;0.001 &lt;0.001 &lt;0.001 &lt;0.001 AUC: Area Under the receiver-operator Curve; HL: Hosmer-Lemeshow test. Figure 1. ROC curves Conclusions The GRACE score provided excellent discrimination for all cause death at one year in two contemporary consecutive patient cohorts with tye 1 myocardial infarction. In patients with type 2 myocardial infarction, GRACE performed well, but recalibration or the development of novel risk scores has the potential to improve risk stratification.

Patient And Nurse Experience Of Using Somatostatin Analogues To Treat Gastroenteropancreatic Neuroendocrine Tumors: Results Of The Somatostatin Treatment Experience Trial (STREET).

PurposeEvaluate patients’ and nurses’ experiences, including injection problem frequency, with the somatostatin analogues (SSAs) lanreotide autogel® (Somatuline® autogel®, deep subcutaneous) and octreotide long-acting release (LAR) (Sandostatin® LAR®, intramuscular) when treating gastroenteropancreatic neuroendocrine tumors (GEP-NETs).MethodsAn observational, cross-sectional study across 2 NET centers in Sweden. Questionnaires based on participants’ most recent injection experience were sent to patients with GEP-NETs treated with octreotide or lanreotide, and to nurses administering these treatments. Nurses were identified via patients completing their questionnaires. Resource use was sourced from Swedish prescription registry records. The planned sample size was 200, based on an estimated proportion of 0.50 and ±7% precision.Results119/156 patients (n=53, lanreotide; n=66, octreotide) and 43/53 nurses (n=22, lanreotide; n=21, octreotide) completed questionnaires. Despite smaller recruitment than planned, the endpoint precision was ±9% with 119 participants, and still considered reasonable. More octreotide-treated patients reported problems (18% vs none; P=0.001) and experienced moderate-to-high anxiety pre-injection (11% vs 2%). Patients had similar physical HRQoL scores overall (Short Form-12 mean composite scores: physical: 39.4 vs 37.6; mental: 50.7 vs 49.6). The mean number of lanreotide and octreotide doses dispensed per year were 11.1 and 12.6, respectively (P<0.05). In the lanreotide group, 28% self-injected, while 29% were not aware they could self-inject. In the octreotide group, 3% self-injected and 73% were unaware of the availability of an SSA for self-injection. Most patients (61%) felt well-informed about their disease and treatment. Nurses were generally experienced and felt confident and well-informed about giving SSA injections; however, only 12% felt well-informed about the disease and treatment.ConclusionThose treated with lanreotide reported fewer injection problems and experienced less pre-injection anxiety than those treated with octreotide. SSA choice did not appear to affect patients’ HRQoL. Some patients treated with octreotide were unaware of an SSA with the flexibility of self-injection.