| 1. |
- Adolfsson, Karin, et al.
(author)
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Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians
- 2022
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In: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 31:6
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Journal article (peer-reviewed)abstract
- Objective This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC). Methods A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated. Results The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility. Conclusions Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.
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| 2. |
- Stenmarker, Emelie, et al.
(author)
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Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden.
- 2018
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In: Journal of patient-reported outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 2:1
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Journal article (peer-reviewed)abstract
- Malignant disorders in childhood are life-threatening conditions, and issues regarding the children's health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study was to explore HRQOL in children with cancer in two countries, Argentina and Sweden, which have different cultural contexts. The specific aims were: to determine HRQOL by gender, age, diagnosis, treatment modality, time since diagnosis, and parental education/employment across cultures. Further aims were to assess the child/parent relationship in HRQOL and the influence of demographic variables in psychosocial and physical HRQOL in each country.A cross-sectional study was performed in 2014, including 58 children (24 females, 34 males) and 62 parents/guardians. The instrument, the Pediatric Quality of Life Inventory™ (PedsQL™, generic, cancer and fatigue modules), and medical records were used. The response rate was 97%.The mean age of the children was 8.67years (SD 5.1, range 2-18years) and the mean time on treatment was 10.7months (SD 8.7, range 1-30months). The most common diagnosis was leukaemia (57%). In Argentina, in comparison with Sweden, a higher estimation of generic HRQOL was reported among adolescents (p=0.022) and more cancer-related problems among school-age children (p<0.0001). Children and parents in both countries confirmed the major problem with fatigue and multimodality therapy regimes, but lower levels of fatigue were reported in Argentina. Adolescents and children with solid tumours appeared as vulnerable groups. In Sweden, children whose mothers had post-secondary education reported less cancer-related problems (p=0.031). Good relationships were found between child/parent reports in Argentina regarding the fatigue module (p=0.034) and physical subscale (p=0.014), and in Sweden regarding generic health (p=0.004), including psychosocial (p=0.006) and physical subscales (p=0.042), and cancer (p=0.001), and fatigue (p<0.0001) modules. In Sweden, psychosocial health (OR 7.5; p=0.007) and physical health (OR 6.2; p=0.011) were positively influenced by being a school-age child.Fatigue is as a major problem across cultures. Still, being in school facilitates recovery. Good relationships in psychosocial HRQOL highlight professional challenges regarding severe issues and open communication, and the need of performing comparative studies of HRQOL of children with cancer from different cultural backgrounds.
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| 3. |
- Björnsson, Bergthor, et al.
(author)
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Digital twins to personalize medicine
- 2020
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In: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 12:1
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Research review (peer-reviewed)abstract
- Personalized medicine requires the integration and processing of vast amounts of data. Here, we propose a solution to this challenge that is based on constructing Digital Twins. These are high-resolution models of individual patients that are computationally treated with thousands of drugs to find the drug that is optimal for the patient.
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| 4. |
- Bohnstedt, C., et al.
(author)
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Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents & apos; experiences
- 2023
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In: Frontiers in Rehabilitation Sciences. - : FRONTIERS MEDIA SA. - 2673-6861. ; 4
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Journal article (peer-reviewed)abstract
- BackgroundStudies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment.PurposeThis study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care.MethodsA qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis.ResultsFour sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment.ConclusionThe study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.
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| 5. |
- Debelius, J. W., et al.
(author)
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The Local Tumor Microbiome Is Associated with Survival in Late-Stage Colorectal Cancer Patients
- 2023
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In: Microbiology Spectrum. - : AMER SOC MICROBIOLOGY. - 2165-0497. ; 11:3
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Journal article (peer-reviewed)abstract
- The gut microbiome is associated with survival in colorectal cancer. Single organisms have been identified as markers of poor prognosis. However, in situ imaging of tumors demonstrate a polymicrobial tumor-associated community. To understand the role of these polymicrobial communities in survival, we conducted a nested case-control study in late-stage cancer patients undergoing resection for primary adenocarcinoma. The microbiome of paired tumor and adjacent normal tissue samples was profiled using 16S rRNA sequencing. We found a consistent difference in the microbiome between paired tumor and adjacent tissue, despite strong individual microbial identities. Furthermore, a larger difference between normal and tumor tissue was associated with prognosis: patients with shorter survival had a larger difference between normal and tumor tissue. Within the tumor tissue, we identified a 39-member community statistic associated with survival; for every log(2)-fold increase in this value, an individual's odds of survival increased by 20% (odds ratio survival 1.20; 95% confidence interval = 1.04 to 1.33). Our results suggest that a polymicrobial tumor-specific microbiome is associated with survival in late-stage colorectal cancer patients.
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| 6. |
- Gawel, Danuta, et al.
(author)
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A validated single-cell-based strategy to identify diagnostic and therapeutic targets in complex diseases
- 2019
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In: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 11
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Journal article (peer-reviewed)abstract
- Background: Genomic medicine has paved the way for identifying biomarkers and therapeutically actionable targets for complex diseases, but is complicated by the involvement of thousands of variably expressed genes across multiple cell types. Single-cell RNA-sequencing study (scRNA-seq) allows the characterization of such complex changes in whole organs. Methods: The study is based on applying network tools to organize and analyze scRNA-seq data from a mouse model of arthritis and human rheumatoid arthritis, in order to find diagnostic biomarkers and therapeutic targets. Diagnostic validation studies were performed using expression profiling data and potential protein biomarkers from prospective clinical studies of 13 diseases. A candidate drug was examined by a treatment study of a mouse model of arthritis, using phenotypic, immunohistochemical, and cellular analyses as read-outs. Results: We performed the first systematic analysis of pathways, potential biomarkers, and drug targets in scRNA-seq data from a complex disease, starting with inflamed joints and lymph nodes from a mouse model of arthritis. We found the involvement of hundreds of pathways, biomarkers, and drug targets that differed greatly between cell types. Analyses of scRNA-seq and GWAS data from human rheumatoid arthritis (RA) supported a similar dispersion of pathogenic mechanisms in different cell types. Thus, systems-level approaches to prioritize biomarkers and drugs are needed. Here, we present a prioritization strategy that is based on constructing network models of disease-associated cell types and interactions using scRNA-seq data from our mouse model of arthritis, as well as human RA, which we term multicellular disease models (MCDMs). We find that the network centrality of MCDM cell types correlates with the enrichment of genes harboring genetic variants associated with RA and thus could potentially be used to prioritize cell types and genes for diagnostics and therapeutics. We validated this hypothesis in a large-scale study of patients with 13 different autoimmune, allergic, infectious, malignant, endocrine, metabolic, and cardiovascular diseases, as well as a therapeutic study of the mouse arthritis model. Conclusions: Overall, our results support that our strategy has the potential to help prioritize diagnostic and therapeutic targets in human disease.
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| 7. |
- Herngren, Bengt, et al.
(author)
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Outcomes after slipped capital femoral epiphysis: a population-based study with three-year follow-up
- 2018
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In: Journal of Childrens Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 12:5, s. 434-443
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Journal article (peer-reviewed)abstract
- Purpose To evaluate outcomes three years after treatment for slipped capital femoral epiphysis (SCFE): development of avascular necrosis (AVN), subsequent surgery, hip function and the contralateral hip. Methods This prospective cohort study included a total national population of 379 children treated for SCFE between 2007 and 2013. A total of 449 hips treated for SCFE and 151 hips treated with a prophylactic fixation were identified. The Barnhoft questionnaire, a valid patient-reported outcome measure (PROM), was used. Results In all, 90 hips had a severe slip, 61 of these were clinically unstable. AVN developed in 25 of the 449 hips. Six of 15 hips treated with capital realignment developed AVN. A peri-implant femur fracture occurred in three slipped hips and in two prophylactically pinned hips. In three of these five hips technical difficulties during surgery was identified. In 43 of 201 hips scheduled for regular follow-up a subsequent SCFE developed in the contralateral hip. Implant extraction after physeal closure was performed in 156 of 449 hips treated for SCFE and in 51 of 151 prophylactically fixed hips. Children with impaired hip function could be identified using the Barnhoft questionnaire. Conclusion Fixation in situ is justified to remain as the primary treatment of choice in SCFE. Overweight is more common in children with SCFE than in the average population. Prophylactic fixation is a safe procedure when performed using a correct technique. The number of patients who developed AVN after capital realignment is of concern. We recommend rigorous follow-up of both hips, including PROM evaluation, until physeal closure.
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| 8. |
- Lindell, Mikael, et al.
(author)
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The contralateral hip in slipped capital femoral epiphysis: Is there an easy-to-use algorithm to support a decision for prophylactic fixation?
- 2022
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In: Journal of Childrens Orthopaedics. - : SAGE Publications. - 1863-2521 .- 1863-2548. ; 16:4, s. 297-305
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Journal article (peer-reviewed)abstract
- Purpose: To identify a specific factor that can support the decision for prophylactic fixation in unilateral slipped capital femoral epiphysis. Methods: This retrospective cohort study included a total national population of 379 children diagnosed with slipped capital femoral epiphysis from 2007 to 2013. Regression analysis used information on slip severity, clinical classification of the index hip, age, sex, age-adjusted body mass index, the difference in epiphyseal-diaphyseal angle, and comorbidity to identify any risk factor for the subsequent development of a slip in the contralateral hip. Four observers evaluated the triradiate cartilage following the modified Oxford bone score grade. The occurrence of later development of a contralateral slip in different stage of physeal closure was used to analyze the sensitivity and specificity for this method. Results: This study's only predictor for a subsequent contralateral slip was chronological age. At age 13 years or older, 1/15 in girls and 3/65 in boys suffered from a slip in the contralateral hip. Thus, when using age <13 years as a test for deciding when to do prophylactic fixation, the sensitivity would be 88% and specificity 51% for preventing contralateral slip. However, the correlation between the four different observers was too low to be considered useful when assessing the triradiate cartilage for skeletal maturity. Conclusion: We would advocate a prophylactic fixation for children <13 years diagnosed with a unilateral slipped capital femoral epiphysis as an easy-to-use algorithm.
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| 9. |
- Nilsson, Stefan, 1972, et al.
(author)
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Place of death among children from 0 to 17 years of age : A population-based study from Sweden
- 2024
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In: Acta Paediatrica. - : WILEY. - 0803-5253 .- 1651-2227.
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Journal article (peer-reviewed)abstract
- AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age.METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors.RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%).CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.
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| 10. |
- Nilsson, Stefan, 1972, et al.
(author)
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Place of death among children from 0 to 17years of age: A population-based study from Sweden.
- 2024
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In: Acta paediatrica (Oslo, Norway : 1992). - 1651-2227.
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Journal article (peer-reviewed)abstract
- The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17years of age.We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors.Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%).Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.
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