Disorders In Norway Research Articles

The ANeED study: Ambroxol in new and early dementia with Lewy bodies

AbstractBackgroundThe mechanisms by which GBA and APOE mutations result in PD or DLB are not fully understood, however there is evidence that it may be connected to reduced levels of GCase enzyme activity. CNS penetration has been confirmed for Ambroxol, and has been shown to increase glucocerebrosidase activity and protein levels in animal and human studies. One small open study with Ambroxol 420mg TID in PD for 186 days found excellent target engagement and improved motor symptoms, and a RCT with 50 PDD patients is ongoing in London, Canada.MethodWe will execute a national multicenter phase III RCT clinical intervention study with Ambroxol in prodromal and mild DLB in Memory Clinics in Norway. We will include persons living with prodromal (DLB‐MCI) or mild DLB with MMSE >=15 to Ambroxol or placebo. We will stratify participants based on genotypes for APOE and GBA and the CSF biomarkers A‐beta, total and phosphorylated tau protein. We will build a national trial platform for drug trials in neurodegenerative disorders in Norway and aim to include more centers in Europe for next phase studies via the European DLB Consortium (E‐DLB). We will execute a PPI program to raise awareness and reduce stigma for people living with DLB and their families.ResultThe ANeED‐study has received funding from the national Norwegian health authorities. Formal approvals for ethics, data protection and Medicine Agency are ongoing. We are planning a national start‐up meeting in Norway in September 2020, and we are currently building a national platform in Norway to be able to run clinical intervention studies in neurodegenerative disorders. We are building a PPI program to recruit patients and caregivers to clinical studies.ConclusionPhase III studies with Ambroxol in PD, PDD and DLB are currently being planned. APOE, GBA and GCase are central to the disease process in both PD, PDD and in DLB. Patients, carers and health providers now need to be offered participation in clinical studies also when diagnosed with one of the α‐synucleinopathies. Preliminary data find Ambroxol to be potentially disease modifying in these disorders.

Testing an individualized digital decision assist system for the diagnosis and management of mental and behavior disorders in children and adolescents

BackgroundNearly half of all mental health disorders develop prior to the age of 15. Early assessments, diagnosis, and treatment are critical to shortening single episodes of care, reducing possible comorbidity and long-term disability. In Norway, approximately 20% of all children and adolescents are experiencing mental health problems. To address this, health officials in Norway have called for the integration of innovative approaches. A clinical decision support system (CDSS) is an innovative, computer-based program that provides health professionals with clinical decision support as they care for patients. CDSS use standardized clinical guidelines and big data to provide guidance and recommendations to clinicians in real-time. IDDEAS (Individualised Digital DEcision Assist System) is a CDSS for diagnosis and treatment of child and adolescent mental health disorders. The aim of IDDEAS is to enhance quality, competency, and efficiency in child and adolescent mental health services (CAMHS).Methods/designIDDEAS is a mixed-methods innovation and research project, which consists of four stages: 1) Assessment of Needs and Preparation of IDDEAS; 2) The Development of IDDEAS CDSS Model; 3) The Evaluation of the IDDEAS CDSS; and, 4) Implementation & Dissemination. Both qualitative and quantitative methods will be used for the evaluation of IDDEAS CDSS model. Child and adolescent psychologists and psychiatrists (n = 30) will evaluate the IDDEAS` usability, acceptability and relevance for diagnosis and treatment of attention-deficit/hyperactivity disorder.DiscussionThe IDDEAS CDSS model is the first guidelines and data-driven CDSS to improve efficiency of diagnosis and treatment of child and adolescent mental health disorders in Norway. Ultimately, IDDEAS will help to improve patient health outcomes and prevent long-term adverse outcomes by providing each patient with evidence-based, customized clinical care.Trial registrationISRCTN, ISRCTN12094788. Ongoing study, registered prospectively 8 April 2020 https://doi.org/10.1186/ISRCTN12094788

Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: a cross-sectional study of patient experiences with physical activity

Purpose To study patient experiences with physical activity among persons with Loeys-Dietz- or vascular Ehlers-Danlos syndrome. Materials and methods A postal questionnaire survey in 2018. Seventy adults with molecularly verified Loeys-Dietz syndrome types 1-4, or vascular Ehlers-Danlos syndrome recruited through a National Resource Centre for Rare Disorders in Norway. Results The response rate was 74%, (Loeys-Dietz n = 34, vascular Ehlers-Danlos n = 18), aged 18 to 68 years, 58% women. In total, 88.5% reported they had received advice regarding physical activity and most (77%) had modified their habits. Fifty percent had an appropriate- and 40% a low mean physical activity sum score. Another 10% had too high physical activity levels due to high intensity scores. Lower scores with the Fatigue Severity Scale (p = 0.033) and the anxiety subscale of the Hospital Anxiety and Depression Scale (p = 0.021), were associated with high physical activity levels. About a third reported unmet rehabilitation needs. Conclusion Many adults with Loeys-Dietz- or vascular Ehlers-Danlos syndrome may have a potential to reach more favorable physical activity levels by increasing the frequency and duration of activities. Future directions should include evaluation of effects of professional-led practical and safe physical activity sessions as well as customized multidisciplinary rehabilitation programs for these patient groups.

Socio-economic differences in all-cause mortality in people with alcohol use disorder: a prospective cohort study.

While alcohol-attributable mortality rates are higher in low socio-economic status (SES) groups, less is known about SES differences in all-cause mortality in alcohol use disorder (AUD). The aim of this study was to explore whether there are SES differences in people with AUD, regarding (i) treatment admission, (ii) all-cause mortality risk and (iii) relative mortality risk. A prospective cohort study in Norway, follow-up period from 2009-10 to 2013. Data on SES and mortality were obtained through linkages to national registries, using national unique ID numbers. AUD patients (age 20+) admitted to treatment in 2009-10 (n=11 726) and age and gender frequency-matched controls from the general population (n=12 055). The SES indicator was education level (low, intermediate and high). Mortality was calculated as deaths per 1000 person-years during the 4-year observation period. Admission to AUD treatment was elevated in the low compared with the high SES categories (OR=3.31, 95% CI=3.09, 3.55). Among AUD patients, mortality risk was elevated in the low SES category (HR=1.23, 95% CI=1.04, 1.45). Relative mortality risk from AUD was significantly higher in the high SES (HR=8.65, 95% CI=6.16, 12.14) compared with the low SES categories (HR=3.29, 95% CI=2.61, 4.15). Admission to treatment for alcohol use disorders in Norway appears to decrease with increasing socio-economic status, and relative mortality risk from alcohol use disorder appears to increase with increasing socio-economic status.

Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of health burden perspectives.

The aim is to study adults with vascular Ehlers-Danlos syndrome (vEDS) and Loeys-Dietz syndrome (LDS) with regard to sociodemographic characteristics, perceived vascular- and multi-organ symptom burdens, and health services utilization. This is a cross-sectional study. In 2018, a postal questionnaire was sent to 71 individuals with genetically verified LDS types 1-4 or vEDS, age ≥ 18 years, recruited through a National Resource Centre for Rare Disorders in Norway. Eighteen patients with vEDS and 34 patients with LDS subtypes 1-4 participated, the response rate was 74%. Median age was 43.5 (range 18-68) years, and 58% were women. Median age at diagnosis was 34 years (range: 6-63). Severe vascular- and multi-organ symptom burdens were found, and chronic pain was reported by 79%. Most respondents (87%) had cardiovascular surveillance visits, 58% yearly or more often, and still 29% had no antihypertensive medications. Three quarters communicated diagnosis-related concerns with their general practitioner. A considerable group (31%) had left work before retirement age. Healthcare professionals should be aware of the spectrum of health burden in adults with vEDS and LDS. A verification of the diagnosis is crucial to counseling, including medical follow-up, education, and work, and advices on precaution and life style decisions.

The organisation of local mental health services in Norway: evidence, uncertainty and policy

This article addresses questions about health authorities’ recommendations on the local organisation of services for people with mental health disorders in Norway. Analysis is made of the dynamic relationship between different evaluations, national guidelines and other knowledge that influence the organisation of services. The analysis is based upon documents about how recommendations by health authorities have shifted during a period of 15 years. The relationship between policy guidelines, the role of scientific evidence and practical organisational models is characterised by ambiguity and pragmatism. Some theoretical implications of these findings and uses of knowledge in different policy areas are discussed.

Erratum to: Changes in utilisation of antiepileptic drugs in epilepsy and non-epilepsy disorders-A pharmacoepidemiological study and clinical implications.

The purpose of this study was to investigate changes in utilisation of antiepileptic drugs (AEDs) in epilepsy and non-epilepsy disorders in Norway and furthermore to study the retention rates of the most commonly used AEDs in these indications in long-term use. The data consisted of all prescriptions of AEDs from Norwegian pharmacies in the Norwegian Prescription Database (NorPD) (2004–2012). Variables included anonymous data regarding age, gender, diagnosis specific reimbursement codes and utilisation of AEDs. In recent years (2008–2012), the utilisation of AEDs in non-epilepsy disorders accounted for 45–53 % of the total use. In epilepsy, the most commonly used AED was lamotrigine, followed by levetiracetam, carbamazepine and valproate. Lamotrigine was also the predominant AED used in psychiatry, while pregabalin and gabapentin were mostly used in neuropathic pain. In migraine, topiramate predominated but accounted for <1 % of the total utilisation of AEDs. The majority of prescriptions were by general practitioners and only 20 % by specialists. Regardless of indication, newer AEDs had higher retention rates (34–48 %) and were used for a longer period before discontinuation. The use of AEDs in non-epilepsy disorders is increasing and accounted for 53 % in 2012. Newer AEDs were predominantly used and demonstrated higher retention rates than older AEDs in all indications. This nationwide study demonstrates an increased exposure to AEDs in new patient groups, and details in prescription patterns and clinical and safety considerations should be closely monitored. This contributes to long-term post-marketing data of AED and accordingly improved pharmacovigilance.

Outpatient clinics treating substance use disorders in Northwest Russia and Northern Norway: a descriptive comparative study

ABSTRACTBoth in Norway and Russia a considerable portion of the population have substance use disorders. However, the knowledge about outpatient services treating substance use disorders in Norway and Russia is limited. This study will describe and compare outpatient clinics treating substance use disorders in Arkhangelsk in Northwest Russia and in Bodø and Tromsø in Northern Norway on availability, accessibility and treated prevalence (patients treated in one year). The managers (N=3) of the outpatient clinics (N=3) were interviewed with the European Service Mapping Schedule (ESMS) and the International Classification of Mental Health Care (ICMHC). The interviews were supplemented by e-mail and phone calls. The treatment in Arkhangelsk was mainly biologically oriented (medical), while a greater variety of methods was available in Bodø and Tromsø. The clinic in Russia was a drop-in clinic, while in Norway patients needed a referral to get an appointment in the clinic. Patients treated in Arkhangelsk (treated prevalence) was 1662, while in Bodø it was 233 and in Tromsø 220. The present study revealed great differences between the clinics involved in accessibility, availability and treated prevalence. Cultural traditions and budgeting of the mental health care system could explain some of the findings.

The epidemiology of post-traumatic stress disorder in Norway: trauma characteristics and pre-existing psychiatric disorders

PurposeThe prevalence of PTSD differs by gender. Pre-existing psychiatric disorders and different traumas experienced by men and women may explain this. The aims of this study were to assess (1) incidence and prevalence of exposure to traumatic events and PTSD, (2) the effect of pre-existing psychiatric disorders prior to trauma on the risk for PTSD, and (3) the effect the characteristics of trauma have on the risk for PTSD. All stratified by gender.MethodCIDI was used to obtain diagnoses at the interview stage and retrospectively for the general population N = 1634.ResultsThe incidence for trauma was 466 and 641 per 100,000 PYs for women and men, respectively. The incidence of PTSD was 88 and 31 per 100,000 PYs. Twelve month and lifetime prevalence of PTSD was 1.7 and 4.3 %, respectively, for women, and 1.0 and 1.4 %, respectively, for men. Pre-existing psychiatric disorders were risk factors for PTSD, but only in women. Premeditated traumas were more harmful.ConclusionGender differences were observed regarding traumatic exposure and in the nature of traumas experienced and incidences of PTSD. Men experienced more traumas and less PTSD. Pre-existing psychiatric disorders were found to be risk factors for subsequent PTSD in women. However, while trauma happens to most, it only rarely leads to PTSD, and the most harmful traumas were premeditated ones. Primary prevention of PTSD is thus feasible, although secondary preventive efforts should be gender-specific.

Changes in utilisation of antiepileptic drugs in epilepsy and non-epilepsy disorders-a pharmacoepidemiological study and clinical implications.

The purpose of this study was to investigate changes in utilisation of antiepileptic drugs (AEDs) in epilepsy and non-epilepsy disorders in Norway and furthermore to study the retention rates of the most commonly used AEDs in these indications in long-term use. The data consisted of all prescriptions of AEDs from Norwegian pharmacies in the Norwegian Prescription Database (NorPD) (2004-2012). Variables included anonymous data regarding age, gender, diagnosis specific reimbursement codes and utilisation of AEDs. In recent years (2008-2012), the utilisation of AEDs in non-epilepsy disorders accounted for 45-53% of the total use. In epilepsy, the most commonly used AED was lamotrigine, followed by levetiracetam, carbamazepine and valproate. Lamotrigine was also the predominant AED used in psychiatry, while pregabalin and gabapentin were mostly used in neuropathic pain. In migraine, topiramate predominated but accounted for <1% of the total utilisation of AEDs. The majority of prescriptions were by general practitioners and only 20% by specialists. Regardless of indication, newer AEDs had higher retention rates (34-48%) and were used for a longer period before discontinuation. The use of AEDs in non-epilepsy disorders is increasing and accounted for 53% in 2012. Newer AEDs were predominantly used and demonstrated higher retention rates than older AEDs in all indications. This nationwide study demonstrates an increased exposure to AEDs in new patient groups, and details in prescription patterns and clinical and safety considerations should be closely monitored. This contributes to long-term post-marketing data of AED and accordingly improved pharmacovigilance.

Assessment of patients with severe temporomandibular disorder in Norway - a multidisciplinary approach

Norway is in the process of establishing a national program for patients with refractory orofacial pain (TMD). The program comprises a systematic multidisciplinary evaluation with a two year follow-up, together with national evidence-based guidelines on the evaluation and treatment of TMD. This paper describes the establishment of the evaluation program and current results.

A founder mutation p.H701P identified as a major cause of SPG7 in Norway.

SPG7 is one of the most common forms of autosomal recessive hereditary spastic paraplegia. The phenotype has been shown to be heterogeneous, varying from a complex spastic ataxia to pure spastic paraplegia or pure ataxia. The aim of this study was to clinically and genetically characterize patients with SPG7 in Norway. Six Norwegian families with a clinical diagnosis of hereditary spastic paraplegia were diagnosed with SPG7 through Sanger sequencing and whole-exome sequencing. Haplotypes were established to identify a possible founder mutation. All patients were thoroughly examined and the clinical and molecular findings are described. The core phenotype was spastic paraparesis with ataxia, bladder disturbances and progressive external ophthalmoplegia. The variant p.H701P was identified in homozygous state in one family and in compound heterozygous state in three families. Haplotype analysis of seven surrounding single nucleotide polymorphisms supports that this variant resides on a founder haplotype. Four of the families were compound heterozygous for the previously well-described p.A510V variant. SPG7 is a common subgroup of hereditary spinocerebellar disorders in Norway. The broad phenotype in the Norwegian SPG7 population illustrates the challenges with the traditional dichotomous classification of hereditary spinocerebellar disorders into hereditary spastic paraplegia or hereditary ataxia. A Norwegian founder mutation p.H701P was identified in four out of six families, making it a major cause of SPG7 in Norway.

Genome-wide analysis of attention deficit hyperactivity disorder in Norway.

BackgroundAttention deficit hyperactivity disorder (ADHD) is a highly heritable neuropsychiatric condition, but it has been difficult to identify genes underlying this disorder. This study aimed to explore genetics of ADHD in an ethnically homogeneous Norwegian population by means of a genome-wide association (GWA) analysis followed by examination of candidate loci.Materials and MethodsParticipants were recruited through Norwegian medical and birth registries as well as the general population. Presence of ADHD was defined according to DSM-IV criteria. Genotyping was performed using Illumina Human OmniExpress-12v1 microarrays. Statistical analyses were divided into several steps: (1) genome-wide association in the form of logistic regression in PLINK and follow-up pathway analyses performed in DAPPLE and INRICH softwares, (2) SNP-heritability calculated using genome-wide complex trait analysis (GCTA) tool, (3) gene-based association tests carried out in JAG software, and (4) evaluation of previously reported genome-wide signals and candidate genes of ADHD.ResultsIn total, 1.358 individuals (478 cases and 880 controls) and 598.384 autosomal SNPs were subjected to GWA analysis. No single polymorphism reached genome-wide significance. The strongest signal was observed at rs9949006 in the ENSG00000263745 gene (OR=1.51, 95% CI 1.28–1.79, p=1.38E-06). Pathway analyses of the top SNPs implicated genes involved in the regulation of gene expression, cell adhesion and inflammation. Among previously identified ADHD candidate genes, prominent association signals were observed for SLC9A9 (rs1393072, OR=1.46, 95% CI = 1.21–1.77, p=9.95E-05) and TPH2 (rs17110690, OR = 1.38, 95% CI = 1.14–1.66, p=8.31E-04).ConclusionThis study confirms the complexity and heterogeneity of ADHD etiology. Taken together with previous findings, our results point to a spectrum of biological mechanisms underlying the symptoms of ADHD, providing targets for further genetic exploration of this complex disorder.

The Early Diagnosis of Preschool Children with Autism Spectrum Disorder in Norway: a Study of Diagnostic Age and Its Associated Factors

Abstract The early identification of autism spectrum disorder is important to ensure access to early intervention. Much research has focused on the identification of early behavioral symptoms and screening. This study examines referral for diagnostic assessment, diagnostic age, and factors associated with diagnostic age for children with autism spectrum disorder. The results of this study indicate that children are referred and diagnosed later than they should be. Previous research has identified a valid time for the identification and diagnosis of this disorder as well as the diagnostic procedures and types of clinics that are associated with the appropriate diagnostic age.

Neurological disorders in the Global Burden of Disease 2010 study

The Global Burden of Disease study (GBD) is a large international initiative to collect and systematize data on disease burden expressed in non-economic terms, to allow comparisons across different disease conditions and countries. To use data from the large GBD 2010 database to determine the importance of neurological disorders in Norway, and to compare it with global data on the same disorders. Relevant data were extracted from the Lancet publication from December 2012, and from the interactive website of the Institute of Health Metrics and Evaluation on GBD. Neurological disorders (Alzheimer's disease, Parkinson's disease, multiple sclerosis, epilepsy, migraine and tension-type headache, other neurological disorders) account for 5-6% of the disease burden in Norway, which is more than it does globally. When also stroke, low back pain and neck pain are included, 10% of the disease burden in Norway is represented by neurological disorders. Neurological disorders are of great public health importance. This knowledge is useful in dimensioning and organizing healthcare systems and necessary when planning education of health personnel on all levels.

E-learning course for Norwegian caregivers

Objectives Frambu Resource Centre for Rare Disorders in Norway has registered 140 persons with Prader-Willi Syndrome (PWS), and often receives inquiries on telephone and e-mail about different aspects concerning this group. Frambu offer local guidance and courses at Frambu, but with limited time resources for local guidance, as well as limited possibilities for local caregivers to participate in courses at Frambu, we found it necessary to distend our competence services for this group. The aim was to provide essential education about PWS to caregivers that work in group homes all over Norway to ensure better and closer follow-up for people with PWS. Our goal was to develop an electronic course to caregivers, as a new competence service from Frambu that will supplement our traditional services.

FRI0419 The norwegian biorheuma project – achieving patient benchmarking and patient register in one work flow using the gotreatit computer software system

BackgroundPatient registries adds valuable information on long term clinical drug effectiveness and safety. Patients treated to target (T2T) by the use of outcome measures have been shown to achieve a...

AB1329 Current and previous use of biologics in rheumatoid arthritis patients. Data from the norwegian biorheuma project

BackgroundNorway (4.9 million inhabitants) is among the countries with the highest proportion of patients with inflammatory joint disorders treated with biologic drugs (1). The total cost for biologic treatment in...

AB1330 If remission and low disease activity is the treatment goal in rheumatoid arthritis, how far are we from this goal in patients currently treated with biologics in ordinary clinical practice? Data from the norwegian biorheuma project

BackgroundBiologic agents are highly efficacious for treatment of rheumatoid arthritis (RA) (1). In 2010 recommendations from an international task force on treating RA to target (T2T) was published. (2) The...

THU0369 The Effect of Anti-TNF Treatment in Axial Spondyloarthritis Patients Treated in Ordinary Clinical Practice – Results from Two Biorheuma Clinics in Norway

BackgroundThe BIORHEUMA (BIOlogic treatment of patients suffering from inflammatory RHEUMAtic disorders in Norway) project encourage participating departments to use outcome measures in daily clinical practice (ref.1). Further to obtain unselected...