| 1. |
- Arlien-Soborg, Mai C., et al.
(författare)
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Acromegaly management in the Nordic countries: A Delphi consensus survey
- 2024
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Ingår i: Clinical Endocrinology. - : WILEY. - 0300-0664 .- 1365-2265.
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveAcromegaly is associated with increased morbidity and mortality if left untreated. The therapeutic options include surgery, medical treatment, and radiotherapy. Several guidelines and recommendations on treatment algorithms and follow-up exist. However, not all recommendations are strictly evidence-based. To evaluate consensus on the treatment and follow-up of patients with acromegaly in the Nordic countries.MethodsA Delphi process was used to map the landscape of acromegaly management in Denmark, Sweden, Norway, Finland, and Iceland. An expert panel developed 37 statements on the treatment and follow-up of patients with acromegaly. Dedicated endocrinologists (n = 47) from the Nordic countries were invited to rate their extent of agreement with the statements, using a Likert-type scale (1-7). Consensus was defined as >= 80% of panelists rating their agreement as >= 5 or <= 3 on the Likert-type scale.ResultsConsensus was reached in 41% (15/37) of the statements. Panelists agreed that pituitary surgery remains first line treatment. There was general agreement to recommend first-generation somatostatin analog (SSA) treatment after failed surgery and to consider repeat surgery. In addition, there was agreement to recommend combination therapy with first-generation SSA and pegvisomant as second- or third-line treatment. In more than 50% of the statements, consensus was not achieved. Considerable disagreement existed regarding pegvisomant monotherapy, and treatment with pasireotide and dopamine agonists.ConclusionThis consensus exploration study on the management of patients with acromegaly in the Nordic countries revealed a relatively large degree of disagreement among experts, which mirrors the complexity of the disease and the shortage of evidence-based data.
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| 2. |
- Arlien-Soborg, Mai C., et al.
(författare)
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Acromegaly management in the Nordic countries: A Delphi consensus survey
- 2024
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Ingår i: CLINICAL ENDOCRINOLOGY. - : WILEY. - 0300-0664 .- 1365-2265.
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Tidskriftsartikel (refereegranskat)abstract
- ObjectiveAcromegaly is associated with increased morbidity and mortality if left untreated. The therapeutic options include surgery, medical treatment, and radiotherapy. Several guidelines and recommendations on treatment algorithms and follow-up exist. However, not all recommendations are strictly evidence-based. To evaluate consensus on the treatment and follow-up of patients with acromegaly in the Nordic countries.MethodsA Delphi process was used to map the landscape of acromegaly management in Denmark, Sweden, Norway, Finland, and Iceland. An expert panel developed 37 statements on the treatment and follow-up of patients with acromegaly. Dedicated endocrinologists (n = 47) from the Nordic countries were invited to rate their extent of agreement with the statements, using a Likert-type scale (1-7). Consensus was defined as >= 80% of panelists rating their agreement as >= 5 or <= 3 on the Likert-type scale.ResultsConsensus was reached in 41% (15/37) of the statements. Panelists agreed that pituitary surgery remains first line treatment. There was general agreement to recommend first-generation somatostatin analog (SSA) treatment after failed surgery and to consider repeat surgery. In addition, there was agreement to recommend combination therapy with first-generation SSA and pegvisomant as second- or third-line treatment. In more than 50% of the statements, consensus was not achieved. Considerable disagreement existed regarding pegvisomant monotherapy, and treatment with pasireotide and dopamine agonists.ConclusionThis consensus exploration study on the management of patients with acromegaly in the Nordic countries revealed a relatively large degree of disagreement among experts, which mirrors the complexity of the disease and the shortage of evidence-based data.
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| 3. |
- Arlien-Søborg, Mai C., et al.
(författare)
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Acromegaly management in the nordic countries : a Delphi consensus survey
- 2024
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Ingår i: Clinical Endocrinology. - : John Wiley & Sons. - 0300-0664 .- 1365-2265.
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Acromegaly is associated with increased morbidity and mortality if left untreated. The therapeutic options include surgery, medical treatment, and radiotherapy. Several guidelines and recommendations on treatment algorithms and follow-up exist. However, not all recommendations are strictly evidence-based. To evaluate consensus on the treatment and follow-up of patients with acromegaly in the Nordic countries.Methods: A Delphi process was used to map the landscape of acromegaly management in Denmark, Sweden, Norway, Finland, and Iceland. An expert panel developed 37 statements on the treatment and follow-up of patients with acromegaly. Dedicated endocrinologists (n = 47) from the Nordic countries were invited to rate their extent of agreement with the statements, using a Likert-type scale (1−7). Consensus was defined as ≥80% of panelists rating their agreement as ≥5 or ≤3 on the Likert-type scale.Results: Consensus was reached in 41% (15/37) of the statements. Panelists agreed that pituitary surgery remains first line treatment. There was general agreement to recommend first-generation somatostatin analog (SSA) treatment after failed surgery and to consider repeat surgery. In addition, there was agreement to recommend combination therapy with first-generation SSA and pegvisomant as second- or third-line treatment. In more than 50% of the statements, consensus was not achieved. Considerable disagreement existed regarding pegvisomant monotherapy, and treatment with pasireotide and dopamine agonists.Conclusion: This consensus exploration study on the management of patients with acromegaly in the Nordic countries revealed a relatively large degree of disagreement among experts, which mirrors the complexity of the disease and the shortage of evidence-based data.
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| 4. |
- Abeid, Muzdalifat, 1973-, et al.
(författare)
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Community perceptions of rape and child sexual abuse : a qualitative study in rural Tanzania
- 2014
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Ingår i: BMC International Health and Human Rights. - 1472-698X. ; 14, s. 23-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Rape of women and children is recognized as a health and human rights issue in Tanzania and internationally. Exploration of the prevailing perceptions in rural areas is needed in order to expand the understanding of sexual violence in the diversity of Tanzania's contexts. The aim of this study therefore was to explore and understand perceptions of rape of women and children at the community level in a rural district in Tanzania with the added objective of exploring those perceptions that may contribute to perpetuating and/or hindering the disclosure of rape incidences. Methods: A qualitative design was employed using focus group discussions with male and female community members including religious leaders, professionals, and other community members. The discussions centered on causes of rape, survivors of rape, help-seeking and reporting, and gathered suggestions on measures for improvement. Six focus group discussions (four of single gender and two of mixed gender) were conducted. The focus group discussions were recorded, transcribed verbatim, and analyzed using manifest qualitative content analysis. Results: The participants perceived rape of women and children to be a frequent and hidden phenomenon. A number of factors were singled out as contributing to rape, such as erosion of social norms, globalization, poverty, vulnerability of children, alcohol/drug abuse and poor parental care. Participants perceived the need for educating the community to raise their knowledge of sexual violence and its consequences, and their roles as preventive agents. Conclusions: In this rural context, social norms reinforce sexual violence against women and children, and hinder them from seeking help from support services. Addressing the identified challenges may promote help-seeking behavior and improve care of survivors of sexual violence, while changes in social and cultural norms are needed for the prevention of sexual violence.
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| 5. |
- Holmström, Margareta, et al.
(författare)
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SWEDISH NATIONAL REGISTRY FOR BLEEDING DISORDERS – A SECOND REPORT
- 2019
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Ingår i: EAHAD 2019.
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Konferensbidrag (refereegranskat)abstract
- Introduction: Hemophilia Care in Sweden is centralized to three different and certified European Hemophilia Care Centers (EHCCs) (Stockholm, Gothenburg and Malmö[f1]). A recent web- based National registry has been set up for patients with bleeding disorders in Sweden. The registry is mainly funded by Swedish authorities. Methods: A multi- professional steering committee is running the registry with representatives from all three centers including physicians, nurses, physiotherapist and also a patient representative. A web- based platform, Real- Q, is used for the registry. Results: By the 31st Dec 2017, a total number of 1030 patients with bleeding disorders were included in the registry, mainly patients with hemophilia A, B and Von Willebrand disease. Data regarding bleedings, treatment modality and type of product, inhibitor status, viral infections are collected. Likewise patient reported outcome measurements (PROM)- such as pain and quality of life[.The number of patients with hemophilia A, B and Von Willebrand disease in 2016 resp 2017 were as follows:Hemophilia A; n = 243 in 2016 and n= 691 in 2017.Hemophilia B: n = 49 in 2016 and n = 191 in 2017.Von Willebrand disease: n = 11 in 2016 and n = 152 in 2017.[LMW1] are registered.[LMW2] are registered on a regular basis? Discussion/Conclusion: The number of patients in the Swedish National Registry for bleeding disorders has increased significantly during the last year; from a total of 308 Dec 31st 2016 to 1030 in Dec 31st 2017. Increasing amount of data will enable further evaluation of treatment data and also joint status, quality of life and bleeding reports.
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| 6. |
- Holmström, Margareta, et al.
(författare)
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Swedish national registry for bleeding disorders - first report
- 2018
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Ingår i: 11th Annual Congress of the European Association for Haemophilia and Allied Disorders 2018, 7–9 February 2018, Madrid, Spain. Haemophilia, 24 (S1). - : Wiley. - 1365-2516.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Introduction : Hemophilia care in Sweden is centralized to 3 centers localized in Gothenburg, Malmö and Stockholm. All centers are certi-fied as European Hemophilia Comprehensive Care Centers (EHCCs). Recently a web- based Swedish national registry has been established with funding from Swedish authorities. Methods : One of the conclusions from the earlier reports from the Swedish agency for health technology assessment and assessment of social services (SBU) and the Dental and Pharmaceutical benefits agency (TLV) was that a national registry for hemophilia and other bleeding disorders was needed to be able to follow the long- term effects of the disease and treatment strategies. An application was submitted in 2012 to apply for funding from Swedenʹs municipali-ties and count councils (SKL). The registry was validated as an official national registry. A multi- professional steering committee is running the registry with representatives from all 3 hemophilia centers includ-ing physicians, nurses, physiotherapist and a patient representative. Support regarding legal aspects, IT- solutions, statistics and economy is provided by QRC Stockholm. Results : By now, 780 patients with bleeding disorders are included in the Swedish national Registry and data regarding bleedings, treat-ment with factor concentrate, inhibitor status, mutations, viral infections such as hepatitis C and HIV are collected. Patient reported outcome measurements (PROM)- such as pain and quality of life - HJHS and target joints are followed continuously. Discussion/Conclusion : The establishment of a Swedish National Registry enables us to perform national annual reports, have a close follow- up of our patients and perform clinical research. Currently are working on an on- line patient treatment application recording directly into the registry. Data from the registry will be an important tool for further evaluation of the treatment of hemophilia and how it affects the long- term consequences of the disease.
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| 7. |
- Papakokkinou, Eleni, et al.
(författare)
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Excess Morbidity Persists in Patients With Cushing’s Disease During Long-term Remission : A Swedish Nationwide Study
- 2020
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Ingår i: Journal of Clinical Endocrinology and Metabolism. - Washington : Oxford University Press. - 0021-972X .- 1945-7197. ; 105:8, s. 2616-2624
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Tidskriftsartikel (refereegranskat)abstract
- Context: Whether multisystem morbidity in Cushing's disease (CD) remains elevated during long-term remission is still undetermined.Objective: To investigate comorbidities in patients with CD.Design, setting, and patients: A retrospective, nationwide study of patients with CD identified in the Swedish National Patient Register between 1987 and 2013. Individual medical records were reviewed to verify diagnosis and remission status.Main outcomes: Standardized incidence ratios (SIRs) with 95% confidence intervals (CIs) were calculated by using the Swedish general population as reference. Comorbidities were investigated during three different time periods: (i) during the 3 years before diagnosis, (ii) from diagnosis to 1 year after remission, and (iii) during long-term remission.Results: We included 502 patients with confirmed CD, of whom 419 were in remission for a median of 10 (interquartile range 4 to 21) years. SIRs (95% CI) for myocardial infarction (4.4; 1.2 to 11.4), fractures (4.9; 2.7 to 8.3), and deep vein thrombosis (13.8; 3.8 to 35.3) were increased during the 3-year period before diagnosis. From diagnosis until 1 year after remission, SIRs (95% CI were increased for thromboembolism (18.3; 7.9 to 36.0), stroke (4.9; 1.3 to 12.5), and sepsis (13.6; 3.7 to 34.8). SIRs for thromboembolism (4.9; 2.6 to 8.4), stroke (3.1; 1.8 to 4.9), and sepsis (6.0; 3.1 to 10.6) remained increased during long-term remission.Conclusion: Patients with CD have an increased incidence of stroke, thromboembolism, and sepsis even after remission, emphasizing the importance of early identification and management of risk factors for these comorbidities during long-term follow-up.
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| 8. |
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| 9. |
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| 10. |
- Ragnarsson, Oskar, 1971, et al.
(författare)
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Overall and Disease-Specific Mortality in Patients With Cushing Disease: A Swedish Nationwide Study
- 2019
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Ingår i: Journal of Clinical Endocrinology and Metabolism. - : ENDOCRINE SOC. - 0021-972X .- 1945-7197. ; 104:6, s. 2375-2384
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Tidskriftsartikel (refereegranskat)abstract
- Context: Whether patients with Cushing disease (CD) in remission have increased mortality is still debatable. Objective: To study overall and disease-specific mortality and predictive factors in an unselected nationwide cohort of patients with CD. Design, Patients, and Methods: A retrospective study of patients diagnosed with CD, identified in the Swedish National Patient Registry between 1987 and 2013. Medical records were systematically reviewed to verify the diagnosis. Standardized mortality ratios (SMRs) with 95% CIs were calculated and Cox regression models were used to identify predictors of mortality. Results: Of 502 identified patients with CD (n = 387 women; 77%), 419 (83%) were confirmed to be in remission. Mean age at diagnosis was 43 (SD, 16) years and median follow-up was 13 (interquartile range, 6 to 23) years. The observed number of deaths was 133 vs 54 expected, resulting in an overall SMR of 2.5 (95% CI, 2.1 to 2.9). The commonest cause of death was cardiovascular diseases (SMR, 3.3; 95% CI, 2.6 to 4.3). Excess mortality was also found associated with infections and suicide. For patients in remission, the SMR was 1.9 (95% CI, 1.5 to 2.3); bilateral adrenalectomy and glucocorticoid replacement therapy were independently associated with increased mortality, whereas GH replacement was associated with improved outcome. Conclusion: Findings from this large nationwide study indicate that patients with CD have excess mortality. The findings illustrate the importance of achieving remission and continued active surveillance, along with adequate hormone replacement and evaluation of cardiovascular risk and mental health.
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