National Board Of Health Research Articles

Epilepsy in tuberous sclerosis patients in Sweden – Healthcare utilization, treatment, morbidity, and mortality using national register data

PurposeThis study is designed to estimate the prevalence of epilepsy associated with TSC in Sweden and to describe treatment, morbidity, and mortality of TSC patients with epilepsy. MethodsRegister data for 2004–2014 was obtained from the National Board of Health and Welfare in Sweden. Patients with TSC were identified using ICD-10 codes. Epilepsy was identified using ICD-10 codes, interventions aimed to treat epilepsy, or prescriptions for antiepileptic drugs. ResultsThe prevalence of TSC was 5.38 per 100 000 individuals. We identified 551 unique patients with TSC, of which 386 (70.1%) had epilepsy. The mean study period was 8.82 years. Antiepileptic drugs were dispensed to 97.9% of patients with epilepsy. The most prescribed antiepileptic drug was sodium valproate. Ketogenic diet was used in 6 (1.6%) patients, vagus nerve stimulation in 23 (6.0%) patients, and epilepsy surgery was performed in 25 (6.5%) patients.The mean number of outpatient visits per year was 4.70 (SD 4.17) and the mean number of inpatient days per year was 3.25 (SD 5.61). The mean number of outpatient visits per year with an ICD-10 code for epilepsy was 1.65 (SD 1.95) and the corresponding number of inpatient days was 2.06 (SD 4.50). A total of 30 patients with TSC and epilepsy died during the study period. ConclusionsThe prevalence of epilepsy in this study was in the lower range of previously reported numbers, suggesting that epilepsy may be overestimated in non-population based studies. A substantial part of the healthcare utilization was directly related to epilepsy.

Trends in hip replacements between 1999 and 2012 in Sweden.

ABSTRACTNational Registers document changes in the circumstance, practice, and outcome of surgery with the passage of time. In the context of total hip replacement (THR), registers can help elucidate the relevant factors that affect the clinical outcome. We evaluated the evolution of factors related to patient, surgical procedure, socio‐economy, and various outcome parameters after merging databases of the Swedish Hip Arthroplasty Register, Statistics Sweden and the National Board of Health and Welfare. Data on 193,253 THRs (164,113 patients) operated between 1999 and 2012 were merged. We studied the evolution of surgical volume, patient demographics, socio‐economic factors, surgical factors, length‐of‐stay, mortality rate, adverse events, re‐operation and revision rates, and Patient Reported Outcome Measures (PROMs). Throughout this time period the majority of patients were operated on with a diagnosis of primary osteoarthritis. Comorbidity indices increased each year observed. The share of all‐cemented implants has dropped from 92% to 68%. More than 88% of the bearings were metal‐on‐polyethylene. Length‐of‐stay decreased by 50%. There was a reduction in 30‐ and 90‐day mortality. Re‐operation and revision rates at 2 years are decreasing. The post‐operative PROMs improved despite the observation of worse pre‐operative pain scores getting over time. The demographics of patients receiving a THR, their comorbidities, and their primary diagnosis are changing. Notwithstanding these changes, outcomes like mortality, re‐operations, revisions, and PROMs have improved. The practice of hip arthroplasty has evolved, even in a country such as Sweden that is considered to be conservative with regard taking on new surgical practices. © 2017 The Authors. Journal of Orthopaedic Research® Published by Wiley Periodicals, Inc. on behalf of Orthopaedic Research Society. J Orthop Res 36:432–442, 2018.

Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders’ perceptions

In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care.

Hospital comparison of stroke care in Sweden: a register-based study

Background and purposeThe objective of this study was to estimate the level of health outcomes and resource use at a hospital level during the first year after a stroke, and...

The evaluation of enhanced feedback interventions to reduce unnecessary blood transfusions (AFFINITIE): protocol for two linked cluster randomised factorial controlled trials

BackgroundBlood for transfusion is a frequently used clinical intervention, and is also a costly and limited resource with risks. Many transfusions are given to stable and non-bleeding patients despite no clear evidence of benefit from clinical studies. Audit and feedback (A&F) is widely used to improve the quality of healthcare, including appropriate use of blood. However, its effects are often inconsistent, indicating the need for coordinated research including more head-to-head trials comparing different ways of delivering feedback. A programmatic series of research projects, termed the ‘Audit and Feedback INterventions to Increase evidence-based Transfusion practIcE’ (AFFINITIE) programme, aims to test different ways of developing and delivering feedback within an existing national audit structure.MethodsThe evaluation will comprise two linked 2×2 factorial, cross-sectional cluster-randomised controlled trials. Each trial will estimate the effects of two feedback interventions, ‘enhanced content’ and ‘enhanced follow-on support’, designed in earlier stages of the AFFINITIE programme, compared to current practice. The interventions will be embedded within two rounds of the UK National Comparative Audit of Blood Transfusion (NCABT) focusing on patient blood management in surgery and use of blood transfusions in patients with haematological malignancies. The unit of randomisation will be National Health Service (NHS) trust or health board. Clusters providing care relevant to the audit topics will be randomised following each baseline audit (separately for each trial), with stratification for size (volume of blood transfusions) and region (Regional Transfusion Committee). The primary outcome for each topic will be the proportion of patients receiving a transfusion coded as unnecessary. For each audit topic a linked, mixed-method fidelity assessment and cost-effectiveness analysis will be conducted in parallel to the trial.DiscussionAFFINITIE involves a series of studies to explore how A&F may be refined to change practice including two cluster randomised trials linked to national audits of transfusion practice. The methodology represents a step-wise increment in study design to more fully evaluate the effects of two enhanced feedback interventions on patient- and trust-level clinical, cost, safety and process outcomes.Trial registrationhttp://www.isrctn.com/ISRCTN15490813

Predicting participation in the population-based Swedish cardiopulmonary bio-image study (SCAPIS) using register data.

To illustrate the importance of access to register data on determinants and predictors of study participation to assess validity of population-based studies. In the present investigation, we use data on sociodemographic conditions and disease history among individuals invited to the Swedish cardiopulmonary bio-image study (SCAPIS) in order to establish a model that predicts study participation. The pilot study of SCAPIS was conducted within the city of Gothenburg, Sweden, in 2012, with 2243 invited individuals (50% participation rate). An anonymous data set for the total target population ( n = 24,502) was made available by register authorities (Statistics Sweden and the National Board of Health and Welfare) and included indicators of invitation to and participation in SCAPIS along with register data on residential area, sociodemographic variables, and disease history. Propensity scores for participation were estimated using logistic regression. Residential area, country of birth, civil status, education, occupational status, and disposable income were all associated with participation in multivariable models. Adding data on disease history only increased overall classification ability marginally. The associations with disease history were diverse with some disease groups negatively associated with participation whereas some others tended to increase participation. The present investigation stresses the importance of a careful consideration of selection effects in population-based studies. Access to detailed register data also for non-participants can in the statistical analysis be used to control for selection bias and enhance generalizability, thereby making the results more relevant for policy decisions.

Comorbidity does not predict long-term mortality after total hip arthroplasty

Background and purpose — In-hospital death following total hip arthroplasty (THA) is related to comorbidity. The long-term effect of comorbidity on all-cause mortality is, however, unknown for this group of patients and it was investigated in this study.Patients and methods — We used data from the Swedish Hip Arthroplasty Register, linked to the National Patient Register from the National Board of Health and Welfare, for patients operated on with THA in 1999–2012. We identified 120,836 THAs that could be included in the study. We evaluated the predictive power of the Charlson and Elixhauser comorbidity indices on mortality, using concordance indices calculated after 5, 8, and 14 years after THA.Results — All comorbidity indices performed poorly as predictors, in fact worse than a base model with age and sex only. Elixhauser was, however, the least bad choice and it predicted mortality with concordance indices 0.59, 0.58, and 0.56 for 5, 8, and 14 years after THA.Interpretation — Comorbidity indices are poor predictors of long-term mortality after THA.

Poor Oral Hygiene Associates with Prostate Cancer - A 28-Year Follow-Up Study from Sweden

The objective of this study was to investigate whether there is an association between the amount of dental plaques and incidence of prostate cancer in patients followed up for 28 years. We hypothesized that dental plaque reflects infection and affects carcinogenesis via the inflammation pathway. This was a database incidence study on 838 30-40-year-old men of 3273 randomly selected subjects from Stockholm area, clinically examined in 1985. Prostate cancer incidence was registered during 28 years from the Center of Epidemiology, Swedish National Board of Health and Welfare, Sweden, according to WHO International Classification of Diseases. We compared baseline clinical data with prostate cancer diagnoses. Twentyeight men of the 838 were diagnosed with prostate cancer up to year 2013. Descriptive statistics and logistic regression were used for analyses. Results showed that dental plaque index (PLI), as indicator of poor oral hygiene and potential source of infection, was higher in men with than without prostate cancer (1.04±0.63 vs 0.78±0.52; p<0.01). This also reflected in higher number of missing molars (p<0.02) which appeared as principal independent predictor with odds ratio 2.4 (95% confidence interval 1.11 – 5.12) in multiple logistic regression analyses with prostate cancer as dependent variable and several independent variables. No significant differences were seen between the groups regarding age, smoking, education, gingival index, calculus index, periodontal pockets, and social status. To our knowledge these data are the first in showing the potential risk of poor oral hygiene for prostate cancer. Result may be explained by low-grade systemic inflammation of oral origin that affects carcinogenesis.

Burden of disease from road traffic and railway noise – a quantification of healthy life years lost in Sweden

Objectives National quantifications of the health burden related to traffic noise are still rare. In this study, we use disability-adjusted life-years (DALY) measure to assess the burden of disease from road traffic and railway noise in Sweden. Methods The number of DALY was assessed for annoyance, sleep disturbance, hypertension, myocardial infarction (MI) and stroke using a method previously implemented by the World Health Organization (WHO). Population exposure to noise was obtained from the Swedish Environmental Protection Agency and the Swedish Transport Administration. Data on disease occurrence were gathered from registers held by the National Board of Health and Welfare and Statistics Sweden. Disability weights (DW) and duration were based on WHO definitions. Finally, we used research-based exposure-response functions or relative risks to estimate disease attributable to noise in each exposure category. Results The number of DALY attributed to traffic noise in Sweden was estimated to be 41033 years; 36711 (90%) related to road traffic and 4322 (10%) related to railway traffic. The most important contributor to the disease burden was sleep disturbances, accounting for 22 218 DALY (54%), followed by annoyance, 12 090 DALY (30%), and cardiovascular diseases, 6725 DALY (16%). Conclusions Road traffic and railway noise contribute significantly to the burden of disease in Sweden each year. The total number of DALY should, however, be interpreted with caution due to limitations in data quality.

Reaching beyond the review of research evidence: a qualitative study of decision making during the development of clinical practice guidelines for disease prevention in healthcare

BackgroundThe judgment and decision making process during guideline development is central for producing high-quality clinical practice guidelines, but the topic is relatively underexplored in the guideline research literature. We have studied the development process of national guidelines with a disease-prevention scope produced by the National board of Health and Welfare (NBHW) in Sweden. The NBHW formal guideline development model states that guideline recommendations should be based on five decision-criteria: research evidence; curative/preventive effect size, severity of the condition; cost-effectiveness; and ethical considerations. A group of health profession representatives (i.e. a prioritization group) was assigned the task of ranking condition-intervention pairs for guideline recommendations, taking into consideration the multiple decision criteria. The aim of this study was to investigate the decision making process during the two-year development of national guidelines for methods of preventing disease.MethodsA qualitative inductive longitudinal case study approach was used to investigate the decision making process. Questionnaires, non-participant observations of nine two-day group meetings, and documents provided data for the analysis. Conventional and summative qualitative content analysis was used to analyse data.ResultsThe guideline development model was modified ad-hoc as the group encountered three main types of dilemmas: high quality evidence vs. low adoptability of recommendation; insufficient evidence vs. high urgency to act; and incoherence in assessment and prioritization within and between four different lifestyle areas. The formal guideline development model guided the decision-criteria used, but three new or revised criteria were added by the group: ‘clinical knowledge and experience’, ‘potential guideline consequences’ and ‘needs of vulnerable groups’. The frequency of the use of various criteria in discussions varied over time. Gender, professional status, and interpersonal skills were perceived to affect individuals’ relative influence on group discussions.ConclusionsThe study shows that guideline development groups make compromises between rigour and pragmatism. The formal guideline development model incorporated multiple aspects, but offered few details on how the different criteria should be handled. The guideline development model devoted little attention to the role of the decision-model and group-related factors. Guideline development models could benefit from clarifying the role of the group-related factors and non-research evidence, such as clinical experience and ethical considerations, in decision-processes during guideline development.

Mental disorders are increasing among children and adolescents in Sweden – a nationwide study with focus on gender differences

IntroductionAn increasing number of young people in Sweden are diagnosed with mental disorders and there appears to be significant gender differences in disease pattern.ObjectiveTo more thoroughly characterize the increase in mental disorders among young people with focus on gender differences.AimTo increase the knowledge of age and sex-specific trends in incidence and prevalence rates of mental disorders among children and adolescents.MethodData on psychiatric diagnoses for the last 10 years were obtained from Swedish national registers held by the National Board of Health and Welfare in Sweden.ResultsNeuropsychiatric, depressive and anxiety disorders have increased markedly among young people the last decade. In addition, men are increasingly diagnosed with substance-related disorders whereas women with borderline personality disorder.ConclusionThe increase in mental disorders among young people is marked and disease affects men and women differently. Because of greater awareness today, some conditions like ADHD are more frequently diagnosed. However, the increase in depressive and anxiety disorders appears genuine and represents an additional challenge.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Measuring quality in elderly care: possibilities and limitations of the vignette method

Listening to citizens is seen as an important source of information about public service performance. In Sweden, to secure the quality of elderly care, the National Board of Health and Welfare conducts a yearly survey of in-home elderly care services and nursing homes. A central problem of the existing survey methodology is the interpersonal incomparability of survey responses due to differences in preferences and health conditions. One way to deal with this problem is to use the survey methodology with anchoring vignettes. The purpose of the paper is to investigate the possibilities and limitations of using anchoring vignettes as a general survey method and specifically to test the method for measuring elderly care quality. The vignettes were developed interactively with professionals working in elderly care and evaluated with 1600 users of in-home elderly care services and nursing homes. The results showed that anchoring vignettes reduce the impact of respondents’ personal characteristics on survey results. In general, anchoring vignettes give more robust answers that reduce the problem of incomparability. However, anchoring vignettes increase the complexity of the questionnaire and have limited value in elderly care. Our results indicate that the method might be applicable when using healthier and younger respondents.

The standardizers: social workers’ role when implementing assessment tools in the Swedish social services

Standardisation and standards are common in the modern world, including in social work. This article focuses on social workers who implement the assessment tool Children’s needs in focus (Barns behov i centrum BBIC) in Swedish social work with children and families. Inspired by ‘siblings’ in the UK, the National Board of Health and Welfare has developed and supported the implementation of the BBIC. From the start, the implementation strategy was to engage well-educated and experienced social workers as educators. The article studies these educators (standardizers) as mediators between national imperatives and local practice during the implementation of the BBIC in the social services. Based on interviews with 10 BBIC educators, three standardizer roles were identified: the instrumental, the adaptive and the transformative. These roles affect the practice of social work in potentially different ways.

The emergence of indicators of integrated vocational rehabilitation in Sweden: How working through coordination agencies made all the difference

Since 2004, a little more than a decade ago, the Swedish government passed legislation which enabled the four primary organisations in public sector vocational rehabilitation to form Coordination Agencies, themselves a fine example of organisational integration. These agencies offered The Social Insurance Office, The Job Centre, County Councils, responsible for healthcare, and local municipalities, responsible for social services, financial coordination and support in the organisation of joined-up and integrated services. The Coordination Agencies also have responsiblities in the area of evaluation and support learning within the local system. Since 2012, in response to the need for more useful measures to follow and evaluate successful integrated services, three coordination agencies teamed up to gather and subsequently pick key indicators. With support from Örebro University and The National Board of Health and Welfare, and financing from the Swedish government, measures were developed and, during 2015-2016 are being quality tested in 15 pilot Coordination Agencies across the country. This poster presentation will offer the opportunity to connect and learn how Coordination Agencies function as key enablers for this remarkable development and the potential for more learning of how organising for integrated services can be accelerated.

Diabetes as a risk factor in patients undergoing groin hernia surgery.

Diabetes is a known risk factor for early postoperative complications. Even so, the incidence of acute postoperative complications following routine hernia surgery is seldom described, and the risk for reoperation for recurrence has hardly been studied. Our aim was to explore if diabetes is a significant risk factor for complications after inguinal hernia surgery. All inguinal hernia repairs registered in the Swedish Hernia Register between 2002 and 2011 were identified. Information on comorbidity and postoperative complications was obtained through cross-referencing with the National Patient Register at the National Board of Health and Welfare. Complicated diabetes was defined as diabetes with secondary manifestations (corresponding to aDCSI >0). The hazards for postoperative complications and reoperation for recurrence after the index hernia operation were calculated. Altogether 162,713 inguinal hernia repairs on 143,041 patients were registered. Of these, the number of patients with diabetes was 4816 (3.4%), including 1123 (0.8%) patients with complicated diabetes (aDCSI>0). A significantly increased risk for postoperative complications was observed up to 30days after hernia surgery when adjusted for gender, age, BMI, history of liver disease, kidney disease or HIV/AIDS, type of hernia and surgical method (odds ratio 1.35, 95% confidence interval 1.14-1.60). No significantly increased risk for reoperation up until December 31, 2011, was observed in either patient group. Diabetes seems to increase the risk for postoperative complications within 30days of inguinal hernia surgery, especially for complicated diabetes. Diabetes does not seem to increase the long-term risk for reoperation for recurrence.

Total cancer incidence in relation to 137Cs fallout in the most contaminated counties in Sweden after the Chernobyl nuclear power plant accident: a register-based study

ObjectivesTo determine the total cancer incidence in relation to a 5-year exposure to caesium-137 (137Cs) from the 1986 Chernobyl nuclear power plant accident.MethodsA closed cohort was defined as all individuals...

An Observational Registry of Carotid Endarterectomy and Carotid Artery Stenting in Brazil: Study Protocol

BackgroundCarotid artery stenting (CAS) and carotid endarterectomy (CEA) are alternative strategies for stroke prevention in patients with atherosclerotic carotid disease. CEA has been considered the first-line treatment for carotid stenosis worldwide, and the safety and efficacy of CAS compared to CEA remains in question.ObjectiveThe purpose of this study is to compare the practice and outcomes of CAS and CEA in a real-world setting within public university hospitals in Brazil.MethodsThis study will be a prospective 5-year analysis of treatment for atherosclerotic carotid stenosis with CEA and CAS performed at 5 centers affiliated with the Vascular Study Group at public university hospitals in Brazil. The indications for the procedures will be determined by each surgeon’s individual discretion, in accordance with preoperative risk evaluation. The primary outcome measures will be (1) any in-hospital stroke or death, and (2) any per-procedural stroke, death, or myocardial infarction (MI). Patients undergoing CEA in conjunction with cardiac surgery will be excluded from the study. Multivariate logistic regression will be performed to identify predictors of stroke or death in patients undergoing CEA and CAS. All tests of significance will be performed at the .05 level. This study was approved by the Committee of Ethics in Research at the University Hospital of Ribeirao Preto Medical School, and in all other participating institutions linked to National Research System and National Board of Health in Brazil (Process 15695/2011).ResultsThis study is currently in the recruitment phase, and the final patient is expected to be enrolled by the end of 2018. We hope to recruit approximately 800 patients to the study. Analyses will focus on primary end points for patients that are allocated to each treatment group. During the per-procedural period, the occurrence of the primary end point components (stroke, MI, or death) for CAS and CEA will be analyzed for symptomatic or asymptomatic subjects.ConclusionsThe analyses of the primary endpoints (and all others variables of the study) are expected to be published in 2019 in a peer reviewed journal, and results will be presented at scientific meetings, with summary results published online. This study will obtain new data related to the quality of treatment for carotid disease in Brazil at the primary training centers of future vascular surgeons, but the initial data that will be obtained and published (with the outcomes and complications) are restricted to the first 30 days postprocedure. This time restriction limits the comparison of the results that relate to the main goal of treatment, which is to decrease the risk of stroke over 5 years. The purpose of the study group is to continue the monitoring of patient records, and evaluate the follow-up data in the 5 years following the initial evaluation. This study protocol will contribute very significantly to improving the care of patients with carotid disease, in addition to qualifying the level of assistance provided in public university hospitals in the state of São Paulo, Brazil.Trial RegistrationClinicaltrials.gov NCT02538276; https://www.clinicaltrials.gov/ct2/show/NCT02538276 (Archived by WebCite at http://www.webcitation.org/6m7APnFLD)

Evaluating the impact of a national naloxone programme on ambulance attendance at overdose incidents: a controlled time-series analysis.

Background and AimsIt has been suggested that distributing naloxone to people who inject drugs (PWID) will lead to fewer attendances by emergency medical services at opioid‐related overdose incidents if peer administration of naloxone was perceived to have resuscitated the overdose victim successfully. This study evaluated the impact of a national naloxone programme (NNP) on ambulance attendance at opioid‐related overdose incidents throughout Scotland. Specifically, we aimed to answer the following research questions: is there evidence of an association between ambulance call‐outs to opioid‐related overdose incidents and the cumulative number of ‘take‐home naloxone’ (THN) kits in issue; and is there evidence of an association between ambulance call‐outs to opioid‐related overdose incidents in early adopter (pilot) or later adopting (non‐pilot) regions and the cumulative number of THN kits issued in those areas?DesignControlled time–series analysis.SettingScotland, UK, 2008–15.ParticipantsPre‐NNP implementation period for the evaluation was defined as 1 April 2008 to 31 March 2011 and the post‐implementation period as 1 April 2011 to 31 March 2015. In total, 3721 ambulance attendances at opioid‐related overdose were recorded for the pre‐NNP implementation period across 158 weeks (mean 23.6 attendances per week) and 5258 attendances across 212 weeks in the post‐implementation period (mean 24.8 attendances per week).InterventionScotland's NNP; formally implemented on 1 April 2011.MeasurementsPrimary outcome measure was weekly incidence (counts) of call‐outs to opioid‐related overdoses at national and regional Health Board level. Data were acquired from the Scottish Ambulance Service (SAS). Models were adjusted for opioid replacement therapy using data acquired from the Information Services Division on monthly sums of all dispensed methadone and buprenorphine in the study period. Models were adjusted further for a control group: weekly incidence (counts) of call‐outs to heroin‐related overdose in the London Borough area acquired from the London Ambulance Service.FindingsThere was no significant association between SAS call‐outs to opioid‐related overdose incidents and THN kits in issue for Scotland as a whole (coefficient 0.009, 95% confidence intervals = −0.01, 0.03, P = 0.39). In addition, the magnitude of association between THN kits and SAS call‐outs did not differ significantly between pilot and non‐pilot regions (interaction test, P = 0.62).ConclusionsThe supply of take‐home naloxone kits through a National Naloxone Programme in Scotland was not associated clearly with a decrease in ambulance attendance at opioid‐related overdose incidents in the 4‐year period after it was implemented in April 2011.

Linking Swedish health data registers to establish a research database and a shared decision-making tool in hip replacement

BackgroundSweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research.Main bodyThe Swedish Hip Arthroplasty Register (SHAR) has been collecting data since 1979. Joint replacement in general and hip replacement in particular is considered a success story with low mortality and complication rate. It is credited to the pioneering work of the SHAR that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance. During its existence SHAR has experienced a constant organic growth. One major development was the introduction of the Patient Reported Outcome Measures program, giving a voice to the patients in healthcare performance evaluation. The next aim for SHAR is to integrate patients’ wishes and expectations with the surgeons’ expertise in the form of a Shared Decision-Making (SDM) instrument. The first step in building such an instrument is to assemble the necessary data. This involves linking the SHARs database with the two aforementioned governmental agencies. The linkage is done by the 10-digit personal identity number assigned at birth (or immigration) for every Swedish resident. The anonymized data is stored on encrypted serves and can only be accessed after double identification.ConclusionThis data will serve as starting point for several research projects and clinical improvement work.

Brottsoffer i indikatorland – Öppna jämförelser inom socialtjänstens brottsofferstödjande arbete

Crime victims in Indicatorland – Open comparisons in the social services’ work with victim supportSince the 90s there have been extensive changes in the public sector, such as rationalization and increasing demands for documentation and review. The changes have also affected the social services’ victim support work that has increasingly been subject to various forms of regulation, such as requirements for monitoring, evaluation and quality assurance. This article aims to examine one of the monitoring systems applied in the victim support work: the instrument of open comparisons. This article is based on an exploratory study of the local organization of crime prevention in two municipalities and analyses how the processes of open comparisons are organized at local, regional and central levels. The empirical data consists of documents such as legal sources and handbooks from e.g. the National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions, as well as documents obtained locally in the two municipalities. Furthermore, interviews were conducted with professionals working on different organizational levels. Analytically the study has been inspired by programme theory, which made it possible to concentrate on clarifying the operational idea in which open comparisons are based and capturing the consequences in the two cases. The study shows that open comparisons have been implemented without support from existing research. However, strong normative support for open comparisons exists within governmental agencies and the Swedish Association of Local Authorities and Regions. They are included as one of many elements of New Public Management and result in changes in the victim support work. In contrast to present visions, the performance is not affected to any significant extent. In contrast, a comprehensive administration is created, where employees of municipalities are supposed to collect data, register information and analyse the results generated by the open comparisons.