| 1. |
- Bolic Baric, Vedrana
(författare)
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Support in school and the occupational transition process : Adolescents and young adults with neuropsychiatric disabilities
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to describe and explore the experiences of support in school of adolescents and young adults with neuropsychiatric disabilities. Furthermore, the aim was to explore support that influences the occupational transition to upper secondary school, further education and work. The two first studies investigated computer use in educational activities and during leisure activities by adolescents with attention deficit hyperactivity disorder (ADHD). Study II also aimed to explore how traditional leisure activities and Internet activities interrelate among adolescents with ADHD. In Studies I and II data was collected using a questionnaire focusing on information and communication technology (ICT) use in school and leisure. Adolescents with ADHD (n = 102) aged 12-18 years were compared with adolescents with physical disabilities (Study I) and adolescents from the general population (Studies I and II). In Study III the aim was to describe the experiences of support at school among young adults with AS and ADHD, and to explore what support they, in retrospect, described as influencing learning. Study IV aimed to describe the occupational transition process to upper secondary school, further education and/or work and to explore what support influenced the process from the perspectives of young adults with AS or ADHD. Studies III (n=13) and IV (n=15) used qualitative semi-structured interviews with young adults with AS or ADHD, aged 18-30 years and were analysed using hermeneutics according to Gadamer.The findings of Study I showed that students with ADHD reported significantly less frequent use of computers for almost all educational activities compared with students with physical disabilities and students from the general population. They reported low satisfaction with computer use in school and a desire to use computers more often and for more activities in school compared with students with physical disabilities. Study II showed that Internet activities among adolescents with ADHD during leisure, tended to focus on online games. Furthermore, analysis demonstrated that Internet activities were broadening leisure activities among adolescents with ADHD, rather than being a substitute for traditional leisure activities. Study III found that young adults with AS or ADHD experienced difficulties at school that included academic, social, and emotional aspects, all of which influenced learning. Support addressing difficulties with academic performance was described as insufficient and only occasionally provided in school. In conclusion, support for learning among students with AS or ADHD needs to combine academic and psychosicial support. The findings of Study IV identified three different pathways following compulsory school. Support influencing the occupational transition process included: occupational transition preparation in compulsory school, practical work experience in a safe environment, and support beyond the workplace. Support from community-based day centres was described both as an important step towards work in the regular labour market, as well as being too far away from the regular labour market.In conclusion, this thesis revealed that support in school among students with AS or ADHD needs to combine academic and psychosocial support. Despite being regarded as facilitating learning, individuals with ADHD or AS reported limited computer and Internet use in school. Based on the results it is suggested that Internet activities may provide adolescents with neuropsychiatric disabilities with new opportunities for social interaction and educational activities. On the basis of the results it is suggested that the occupational transition process should be viewed as a longitudinal one, starting in compulsory school and continuing on until young adults obtain and are able to remain in work or further education. This thesis revealed that extended transition planning, inter-service collaboration and support from communitybased day centres were aspects of the environment that influenced the occupational transition process.
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| 2. |
- Dennersten, Ulrika, et al.
(författare)
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Lung function in the aging Swedish cystic fibrosis population.
- 2009
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Ingår i: Respiratory medicine. - : Elsevier BV. - 1532-3064 .- 0954-6111. ; 103:7, s. 1076-82
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Tidskriftsartikel (refereegranskat)abstract
- Swedish Cystic Fibrosis (CF) care follows international guidelines in general. The only difference in our CF care package since 25 years is the physiotherapy regimen. Airway clearance therapy has since the early 1980s, from the day of diagnosis, been based upon daily physical exercise in conjunction with techniques for transporting and evacuating mucus. Postural Drainage+/-percussion and vibration has not been used in any age. The aim of this study was to evaluate our CF care package. Lung function data from the start of the study and with a 3-year interval were collected in the entire Swedish CF population > or =7 years old. Data were analysed for the age groups 7-17 and > or =18 years of age. Change of lung function over the study period was calculated. The impact of chronic Pseudomonas aeruginosa (Pa) colonisation and basal FEV(1)%p was also evaluated in a linear mixed model. Data from 99% of the country-wide CF population were available at inclusion. Mean FEV(1)%p was 90+/-21 vs 73+/-26 in the different age groups and mean VC%p was 94+/-18 vs 91+/-20. Forty percent of the adult group was > or =30 years old. Overall, 41% were chronically Pa colonised. Mean annual FEV(1)%p rate of decline was 0.77 and 0.64 in the different age groups. Lung function among Swedish CF patients is good and annual rate of decline low, even in an old cohort. The large proportion of adult patients emphasises future demands on CF care.
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| 3. |
- Hellberg, Lena, et al.
(författare)
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Ett nationellt sammanhållet system för kunskapsbaserad vård : ett system, många möjligheter
- 2020
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Utredningens förslag har primärt två syften. Förslagen syftar dels till att öka förutsättningarna för staten att göra de insatser som mest effektivt bidrar till att målen med hälso- och sjukvården nås, dels till att öka förutsättningarna för hälso- och sjukvårdens professioner att arbeta kunskapsbaserat.Hälso- och sjukvården är en komplex verksamhet med många olika aktörer. För att få ihop hälso- och sjukvården till en fungerande helhet behövs strukturer och väl fungerande samarbeten.Utredningens uppdrag handlar i grunden om att utveckla och stärka strukturer, förutsättningar och samarbeten för att nå en god vård. Utredningens samlade förslag, bedömningar och rekommendationer bidrar till bättre förutsättningar för en långsiktig utveckling där staten, regionerna och kommunerna kan arbeta tillsammans mot målen med hälso- och sjukvården och därmed skapa värde för patienten. Detta görs genom att:• underlätta för regeringen att styra mer strategiskt, kunskapsbaserat och långsiktigt hållbart. En förbättrad uppföljning av statliga initiativ och ett mer strukturerat samarbete mellan myndigheterna bidrar till att skapa ett utvecklat underlag för regeringens beslut om nya insatser.• förutsättningar för att arbeta kunskapsbaserat lokalt i regioner och kommuner stärks bl.a. genom att staten fortsätter att utveckla sitt stöd. Mer fokus än i dag läggs på stöd till den kommunala hälso- och sjukvården.• ett nationellt sammanhållet system för kunskapsbaserad vård får långsiktiga förutsättningar att utvecklas genom att en överenskommelse sluts mellan stat, regioner och kommuner. Principer och strukturer för ett långsiktigt samarbete läggs fast där några centrala utgångspunkter är en gemensam målbild samt principer för prioriterings- och arbetsprocesser.
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| 4. |
- Hultcrantz, Monica, et al.
(författare)
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From evidence to policy on a national level : supporting the government’s role in a learning healthcare system
- 2020
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Ingår i: Cochrane Database of Systematic Reviews. - 1469-493X. ; 9, s. 190-190
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Tidskriftsartikel (refereegranskat)abstract
- Background: In August 2018, the Swedish government appointed a special investigator to support a national ecosystem for evidence-based healthcare. In November 2019, the inquiry received an additional task now focusing on follow-up to enable a more strategic, evidence-based and long-term sustainable management of health care on a national level. Since healthcare systems around the world face similar challenges, we believe the results of the investigation are highly relevant for a broader audience.Objectives: To analyze how governmental agencies can better support a comprehensive follow-up of health care and thereby create a learning system on a national level. This includes following the effects of the government’s initiatives and reforms and analyzing where future governmental interventions are needed.Methods: The investigator and her team have worked with an expert committee including representatives of governmental agencies, healthcare professions and healthcare providers, as well as a reference group of patient representatives. Additional information has been collected through questionnaires, workshops and meetings with stakeholders and other governmental inquiries working on related topics. Background information was collected from published research, governmental reports, existing regulations etc.Results: Although roughly estimated more than 1000 full-time government employees work with followup in Sweden, the quality, effectiveness and equity in health care is not improving at the anticipated rate. Our findings suggest that a co-ordination of the different initiatives is a prerequisite for creating a learning system on a national level. Key challenges arise in the interface between evidence and policy. At the Colloquium, we will present possible solutions to these challenges using the Swedish healthcare system as an example.Conclusions: Although a lot of efforts are made in conducting and developing methods for evidence generation, implementation and follow-up, it is apparent that the full value for patients is not reached. Facilitators are needed for a learning system on a national level, where the government’s initiatives efficiently contribute to an increased quality, effectiveness and equity in health care. Sharing experiences from national efforts can be one way of increasing the understanding of what these facilitators are. Patient or healthcare consumer involvement: We have received valuable input through regular meetings with a reference group of six representatives from different patient organizations throughout the work. The expert committee linked to the investigation also included a patient representative adding important perspectives to the discussions.
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| 5. |
- Klevebro, Susanna, et al.
(författare)
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Risk of SARS-CoV-2 exposure among hospital healthcare workers in relation to patient contact and type of care
- 2021
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 49:7, s. 707-712
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Tidskriftsartikel (refereegranskat)abstract
- We aimed to assess prevalence of IgG antibodies to severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) and factors associated with seropositivity in a large cohort of healthcare workers (HCWs). Methods: From 11 May until 11 June 2020, 3981 HCWs at a large Swedish emergency care hospital provided serum samples and questionnaire data. Presence of IgG antibodies to SARS-CoV-2 was measured as an indicator of SARS-CoV-2 exposure. Results: The total seroprevalence was 18% and increased during the study period. Among the seropositive HCWs, 11% had been entirely asymptomatic. Participants who worked with COVID-19 patients had higher odds for seropositivity: adjusted odds ratio 1.96 (95% confidence intervals 1.59–2.42). HCWs from three of the departments managing COVID-19 patients had significantly higher seroprevalences, whereas the prevalence among HCWs from the intensive care unit (also managing COVID-19 patients) was significantly lower. Conclusions: HCWs in contact with SARS-CoV-2 infected patients had a variable, but on average higher, likelihood for SARS-CoV-2 infections.
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| 6. |
- Tesi, Bianca, et al.
(författare)
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Diagnostic yield and clinical impact of germline sequencing in children with CNS and extracranial solid tumors : a nationwide, prospective Swedish study
- 2024
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Ingår i: The Lancet Regional Health. - : Elsevier. - 2666-7762. ; 39
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundChildhood cancer predisposition (ChiCaP) syndromes are increasingly recognized as contributing factors to childhood cancer development. Yet, due to variable availability of germline testing, many children with ChiCaP might go undetected today. We report results from the nationwide and prospective ChiCaP study that investigated diagnostic yield and clinical impact of integrating germline whole-genome sequencing (gWGS) with tumor sequencing and systematic phenotyping in children with solid tumors.MethodsgWGS was performed in 309 children at diagnosis of CNS (n = 123, 40%) or extracranial (n = 186, 60%) solid tumors and analyzed for disease-causing variants in 189 known cancer predisposing genes. Tumor sequencing data were available for 74% (227/309) of patients. In addition, a standardized clinical assessment for underlying predisposition was performed in 95% (293/309) of patients.FindingsThe prevalence of ChiCaP diagnoses was 11% (35/309), of which 69% (24/35) were unknown at inclusion (diagnostic yield 8%, 24/298). A second-hit and/or relevant mutational signature was observed in 19/21 (90%) tumors with informative data. ChiCaP diagnoses were more prevalent among patients with retinoblastomas (50%, 6/12) and high-grade astrocytomas (37%, 6/16), and in those with non-cancer related features (23%, 20/88), and ≥2 positive ChiCaP criteria (28%, 22/79). ChiCaP diagnoses were autosomal dominant in 80% (28/35) of patients, yet confirmed de novo in 64% (18/28). The 35 ChiCaP findings resulted in tailored surveillance (86%, 30/35) and treatment recommendations (31%, 11/35).InterpretationOverall, our results demonstrate that systematic phenotyping, combined with genomics-based diagnostics of ChiCaP in children with solid tumors is feasible in large-scale clinical practice and critically guides personalized care in a sizable proportion of patients.
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| 7. |
- Tesi, Bianca, et al.
(författare)
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Diagnostic yield and clinical impact of germline sequencing in children with CNS and extracranial solid tumors : a nationwide, prospective Swedish study
- 2024
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Ingår i: The Lancet Regional Health. - : Elsevier. - 2666-7762. ; 39
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Tidskriftsartikel (refereegranskat)abstract
- Background: Childhood cancer predisposition (ChiCaP) syndromes are increasingly recognized as contributing factors to childhood cancer development. Yet, due to variable availability of germline testing, many children with ChiCaP might go undetected today. We report results from the nationwide and prospective ChiCaP study that investigated diagnostic yield and clinical impact of integrating germline whole-genome sequencing (gWGS) with tumor sequencing and systematic phenotyping in children with solid tumors.Methods: gWGS was performed in 309 children at diagnosis of CNS (n = 123, 40%) or extracranial (n = 186, 60%) solid tumors and analyzed for disease-causing variants in 189 known cancer predisposing genes. Tumor sequencing data were available for 74% (227/309) of patients. In addition, a standardized clinical assessment for underlying predisposition was performed in 95% (293/309) of patients.Findings: The prevalence of ChiCaP diagnoses was 11% (35/309), of which 69% (24/35) were unknown at inclusion (diagnostic yield 8%, 24/298). A second-hit and/or relevant mutational signature was observed in 19/21 (90%) tumors with informative data. ChiCaP diagnoses were more prevalent among patients with retinoblastomas (50%, 6/12) and high-grade astrocytomas (37%, 6/16), and in those with non-cancer related features (23%, 20/88), and ≥2 positive ChiCaP criteria (28%, 22/79). ChiCaP diagnoses were autosomal dominant in 80% (28/35) of patients, yet confirmed de novo in 64% (18/28). The 35 ChiCaP findings resulted in tailored surveillance (86%, 30/35) and treatment recommendations (31%, 11/35).Interpretation: Overall, our results demonstrate that systematic phenotyping, combined with genomics-based diagnostics of ChiCaP in children with solid tumors is feasible in large-scale clinical practice and critically guides personalized care in a sizable proportion of patients.Funding: The study was supported by the Swedish Childhood Cancer Fund and the Ministry of Health and Social Affairs.
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| 8. |
- Wadensten, Elisabeth, et al.
(författare)
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Diagnostic Yield From a Nationwide Implementation of Precision Medicine for all Children With Cancer.
- 2023
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Ingår i: JCO precision oncology. - : American Society of Clinical Oncology. - 2473-4284. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Several studies have indicated that broad genomic characterization of childhood cancer provides diagnostically and/or therapeutically relevant information in selected high-risk cases. However, the extent to which such characterization offers clinically actionable data in a prospective broadly inclusive setting remains largely unexplored.We implemented prospective whole-genome sequencing (WGS) of tumor and germline, complemented by whole-transcriptome sequencing (RNA-Seq) for all children diagnosed with a primary or relapsed solid malignancy in Sweden. Multidisciplinary molecular tumor boards were set up to integrate genomic data in the clinical decision process along with a medicolegal framework enabling secondary use of sequencing data for research purposes.During the study's first 14 months, 118 solid tumors from 117 patients were subjected to WGS, with complementary RNA-Seq for fusion gene detection in 52 tumors. There was no significant geographic bias in patient enrollment, and the included tumor types reflected the annual national incidence of pediatric solid tumor types. Of the 112 tumors with somatic mutations, 106 (95%) exhibited alterations with a clear clinical correlation. In 46 of 118 tumors (39%), sequencing only corroborated histopathological diagnoses, while in 59 cases (50%), it contributed to additional subclassification or detection of prognostic markers. Potential treatment targets were found in 31 patients (26%), most commonly ALK mutations/fusions (n = 4), RAS/RAF/MEK/ERK pathway mutations (n = 14), FGFR1 mutations/fusions (n = 5), IDH1 mutations (n = 2), and NTRK2 gene fusions (n = 2). In one patient, the tumor diagnosis was revised based on sequencing. Clinically relevant germline variants were detected in 8 of 94 patients (8.5%).Up-front, large-scale genomic characterization of pediatric solid malignancies provides diagnostically valuable data in the majority of patients also in a largely unselected cohort.
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| 9. |
- Wadensten, Elisabeth, et al.
(författare)
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Diagnostic Yield From a Nationwide Implementation of Precision Medicine for all Children With Cancer
- 2023
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Ingår i: JCO Precision Oncology. - : American Society of Clinical Oncology. - 2473-4284. ; :7
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Several studies have indicated that broad genomic characterization of childhood cancer provides diagnostically and/or therapeutically relevant information in selected high-risk cases. However, the extent to which such characterization offers clinically actionable data in a prospective broadly inclusive setting remains largely unexplored.Methods: We implemented prospective whole-genome sequencing (WGS) of tumor and germline, complemented by whole-transcriptome sequencing (RNA-Seq) for all children diagnosed with a primary or relapsed solid malignancy in Sweden. Multidisciplinary molecular tumor boards were set up to integrate genomic data in the clinical decision process along with a medicolegal framework enabling secondary use of sequencing data for research purposes.Results: During the study's first 14 months, 118 solid tumors from 117 patients were subjected to WGS, with complementary RNA-Seq for fusion gene detection in 52 tumors. There was no significant geographic bias in patient enrollment, and the included tumor types reflected the annual national incidence of pediatric solid tumor types. Of the 112 tumors with somatic mutations, 106 (95%) exhibited alterations with a clear clinical correlation. In 46 of 118 tumors (39%), sequencing only corroborated histopathological diagnoses, while in 59 cases (50%), it contributed to additional subclassification or detection of prognostic markers. Potential treatment targets were found in 31 patients (26%), most commonly ALK mutations/fusions (n = 4), RAS/RAF/MEK/ERK pathway mutations (n = 14), FGFR1 mutations/fusions (n = 5), IDH1 mutations (n = 2), and NTRK2 gene fusions (n = 2). In one patient, the tumor diagnosis was revised based on sequencing. Clinically relevant germline variants were detected in 8 of 94 patients (8.5%).Conclusion: Up-front, large-scale genomic characterization of pediatric solid malignancies provides diagnostically valuable data in the majority of patients also in a largely unselected cohort.
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