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1.	Girma Kebede, Betlehem, et al. (författare) Communicative challenges among physicians, patients, and family caregivers in cancer care: An exploratory qualitative study in Ethiopia 2020 Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:3 Tidskriftsartikel (refereegranskat)abstract Background: Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. Objective We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. Methods This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. Results Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. Conclusions This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients’ dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient’s continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.
2.	Allum, W., et al. (författare) ECCO essential requirements for quality cancer care: Oesophageal and gastric cancer 2018 Ingår i: Critical reviews in oncology/hematology. - : Elsevier BV. - 1040-8428. ; 122, s. 179-193 Tidskriftsartikel (refereegranskat)abstract Background: ECCO essential requirements for quality cancer care (ERQCC) are checklists and explanations of organisation and actions that are necessary to give high-quality care to patients who have a specific type of cancer. They are written by European experts representing all disciplines involved in cancer care. ERQCC papers give oncology teams, patients, policymakers and managers an overview of the elements needed in any healthcare system to provide high quality of care throughout the patient journey. References are made to clinical guidelines and other resources where appropriate, and the focus is on care in Europe. Oesophageal and gastric: essential requirements for quality care: • Oesophageal and gastric (OG) cancers are a challenging tumour group with a poor prognosis and wide variation in outcomes among European countries. Increasing numbers of older people are contracting the diseases, and treatments and care pathways are becoming more complex in both curative and palliative settings.• High-quality care can only be a carried out in specialised OG cancer units or centres which have both a core multidisciplinary team and an extended team of allied professionals, and which are subject to quality and audit procedures. Such units or centres are far from universal in all European countries.• It is essential that, to meet European aspirations for comprehensive cancer control, healthcare organisations implement the essential requirements in this paper, paying particular attention to multidisciplinarity and patient-centred pathways from diagnosis, to treatment, to survivorship. Conclusion: Taken together, the information presented in this paper provides a comprehensive description of the essential requirements for establishing a high-quality OG cancer service. The ERQCC expert group is aware that it is not possible to propose a ‘one size fits all’ system for all countries, but urges that access to multidisciplinary units or centres must be guaranteed for all those with OG cancer.
3.	Munthe, Christian, 1962 (författare) Etik och ärftlighet: exemplet cancer : Ethics and heredity: the case of cancer 2009 Ingår i: The Karlstad Meeting on Oncological Care and Medicine, Karlstad, February 28, 2009. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
4.	Bin Kaderi, Mohamed Arifin, 1978- (författare) Assessment of Novel Molecular Prognostic Markers in Chronic Lymphocytic Leukemia 2010 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract The clinical course of chronic lymphocytic leukemia (CLL) is highly heterogeneous, which has prompted the search for biomarkers that can predict prognosis in this disease. The IGHV gene mutation status and certain genomic aberrations have been identified as reliable prognostic markers of clinical outcome for this disorder. However, the search for more feasible prognostic markers in CLL is still being pursued. Recently, certain single nucleotide polymorphisms (SNPs) in the GNAS1, BCL2 and MDM2 genes and the RNA expression levels of the LPL, ZAP70, TCL1, CLLU1 and MCL1 genes were suggested as novel prognostic markers in CLL. In papers I-III, we performed genotyping analyses of the GNAS1 T393C, BCL2 -938C>A and MDM2 SNP309 polymorphisms in 268-418 CLL patients and related the genotypes with clinical data. Association studies between the polymorphisms and established prognostic markers (i.e. IGHV mutation status, genomic aberrations, CD38 expression) were also performed. Our studies did not find any significant relationship between these SNPs with either clinical outcome or other known prognostic markers in CLL. In paper IV, we measured the RNA expression levels of LPL, ZAP70, TCL1, CLLU1 and MCL1 in 252 CLL cases and correlated these levels with clinical outcome. Here, we verified that high expression of all these RNA-based markers, except MCL1, were associated with an unfavourable prognosis. We also confirmed a close relationship between IGHV mutation status and the RNA-based markers, especially for LPL and CLLU1 expression. Among the RNA-based markers, multivariate analysis revealed LPL expression as the strongest independent prognostic marker for overall survival and time to treatment. Furthermore, the RNA-based markers could add further prognostic information to established markers in subgroups of patients, with LPL expression status giving the most significant results. In summary, data from papers I-III could not verify the GNAS1 T393C, BCL2 -938C>A and MDM2 SNP309 polymorphisms as prognostic markers in CLL. Future SNP markers must hence be confirmed in large, independent cohorts before being proposed as prognostic marker in CLL. In paper IV, we conclude that LPL expression appears to be the strongest among the RNA-based markers for CLL prognostication. Further efforts to standardize LPL quantification are required before it can be applied in the clinical laboratory to predict clinical outcome in this disease.
5.	Brännström, Margareta, et al. (författare) Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study 2016 Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 30:1, s. 54-63 Tidskriftsartikel (refereegranskat)abstract Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate=-2.46; 95% confidence interval=-4.43 to -0.49) and nausea (estimate=-1.83; 95% confidence interval=-3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate=-0.47; 95% confidence interval=-0.85 to -0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
6.	Huvila, J., et al. (författare) Combined ASRGL1 and p53 immunohistochemistry as an independent predictor of survival in endometrioid endometrial carcinoma 2018 Ingår i: Gynecologic Oncology. - : Academic Press Inc.. - 0090-8258 .- 1095-6859. ; 149:1, s. 173-180 Tidskriftsartikel (refereegranskat)abstract Objective: In clinical practise, prognostication of endometrial cancer is based on clinicopathological risk factors. The use of immunohistochemistry-based markers as prognostic tools is generally not recommended and a systematic analysis of their utility as a panel is lacking. We evaluated whether an immunohistochemical marker panel could reliably assess endometrioid endometrial cancer (EEC) outcome independent of clinicopathological information. Methods: A cohort of 306 EEC specimens was profiled using tissue microarray (TMA). Cost- and time-efficient immunohistochemical analysis of well-established tissue biomarkers (ER, PR, HER2, Ki-67, MLH1 and p53) and two new biomarkers (L1CAM and ASRGL1) was carried out. Statistical modelling with embedded variable selection was applied on the staining results to identify minimal prognostic panels with maximal prognostic accuracy without compromising generalizability. Results: A panel including p53 and ASRGL1 immunohistochemistry was identified as the most accurate predictor of relapse-free and disease-specific survival. Within this panel, patients were allocated into high- (5.9%), intermediate- (29.5%) and low- (64.6%) risk groups where high-risk patients had a 30-fold risk (P < 0.001) of dying of EEC compared to the low-risk group. Conclusions: P53 and ASRGL1 immunoprofiling stratifies EEC patients into three risk groups with significantly different outcomes. This simple and easily applicable panel could provide a useful tool in EEC risk stratification and guiding the allocation of treatment modalities.
7.	Möllerberg, Marie-Louise, et al. (författare) The effects of a cancer diagnosis on the health of a patient's partner : a population-based registry study of cancer in Sweden 2016 Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 25:5, s. 744-752 Tidskriftsartikel (refereegranskat)abstract The aim of this population-based registry study was to explore how cancer influences the health of partners, by examining the onset of new diagnoses for partners, health care use and health care costs among partners living with patients with cancer. The sample consisted of partners of patients with cancer (N = 10 353) and partners of age- and sex-matched controls who did not have cancer (N = 74 592). Diagnoses, health care use and health care costs were studied for a continuous period starting 1 year before the date of cancer diagnosis and continued for 3 years. One year after cancer diagnosis, partners of patients with cancer had significantly more mood disorders, reactions to severe stress and ischaemic heart disease than they exhibited in the year before the diagnosis. Among partners of patients with cancer, the type of cancer was associated with the extent and form of increased health care use and costs; both health care use and costs increased among partners of patients with liver cancer, lung cancer, colon cancer and miscellaneous other cancers. The risk of poorer health varied according to the type of cancer diagnosed, and appeared related to the severity and prognosis of that diagnosis.
8.	Eilertsen, M. E. B., et al. (författare) Impact of Social Support on Bereaved Siblings' Anxiety: A Nationwide Follow-Up 2013 Ingår i: Journal of Pediatric Oncology Nursing. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 301-310 Tidskriftsartikel (refereegranskat)abstract Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.
9.	Berbyuk Lindström, Nataliya, 1978, et al. (författare) Person- and Family-Centeredness in Ethiopian Cancer Care: Improving Communication, Ethics, Decision Making and Health 2020 Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:5 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital (TASH) in Addis Ababa is the country's sole specialist unit for cancer care. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential in order to help patients as much as possible within such limitations. OBJECTIVE: The project addresses three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice, and (3) to plan and evaluate interventions in this area. METHODS: This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making, and ethical tensions between patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semi-structured interviews with the Ethiopian staff, patients, and family caregivers (91), survey data on cancer awareness (150) and attitudes to breaking bad news (450), and video-recordings of medical consultations (45). In addition, we will also develop clinical and methodological solutions to formulate educational interventions. RESULTS: The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018-2021. The research ethics board in Sweden and in Ethiopia approved the conduct of the project in May 2018. The results from the studies will be published in 2020 and 2021. CONCLUSIONS: The project is a first step towards producing unique and seminal knowledge for the specific context of Ethiopia in the area of physician-patient communication research and ethics. It contributes to an understanding of the complexity around the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low resource settings in Africa and the Middle East, which share central cultural prerequisites (such as a strong patriarchal family structure, combined with strong and devout religiosity). The project will also serve to develop greater understanding about current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will also contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication.
10.	Munthe, Christian, 1962 (författare) Ethical aspects on prioritisation of new cancer drugs 2015 Ingår i: 11th Nordic Melanoma Meeting, Gothenburg, 3 September, 2015. Konferensbidrag (övrigt vetenskapligt/konstnärligt)
11.	Birgisdóttir, Dröfn, et al. (författare) Losing a parent to cancer as a teenager: Family cohesion in childhood, teenage, and young adulthood as perceived by bereaved and non-bereaved youths 2019 Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 28:9, s. 1845-1853 Tidskriftsartikel (refereegranskat)abstract Objective The aim of this study was to investigate levels of perceived family cohesion during childhood, teenage years, and young adulthood in cancer-bereaved youths compared with non-bereaved peers. Methods In this nationwide, population-based study, 622 (73%) young adults (aged 18-26) who had lost a parent to cancer 6 to 9 years previously, when they were teenagers (aged 13-16), and 330 (78%) non-bereaved peers from a matched random sample answered a study-specific questionnaire. Associations were assessed using multivariable logistic regression. Results Compared with non-bereaved youths, the cancer-bereaved participants were more likely to report poor family cohesion during teenage years (odds ratio [OR] 1.6, 95% CI, 1.0-2.4, and 2.3, 95% CI, 1.5-3.5, for paternally and maternally bereaved youths, respectively). This was also seen in young adulthood among maternally bereaved participants (OR 2.5; 95% CI, 1.6-4.1), while there was no difference between paternally bereaved and non-bereaved youths. After controlling for a number of covariates (eg, year of birth, number of siblings, and depression), the adjusted ORs for poor family cohesion remained statistically significant. In a further analysis stratified for gender, this difference in perceived poor family cohesion was only noted in females. Conclusion Teenage loss of a parent to cancer was associated with perceived poor family cohesion during teenage years. This was also noted in young adulthood among the maternally bereaved. Females were more likely to report poor family cohesion. Our results indicate a need for increased awareness of family cohesion in bereaved-to-be families with teenage offspring, with special attention to gender roles.
12.	Browall, Maria, et al. (författare) Information needs of women with recently diagnosed ovarian cancer - A longitudinal study 2004 Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 8:3, s. 200-207 Tidskriftsartikel (refereegranskat)abstract The aim of this study was to investigate the information needs among patients with ovarian cancer and whether these information needs change over time. The information needs were evaluated three times, through structured interviews, and were based on the paired comparison approach developed by Degner and colleagues. A consecutive sample of patients (n=82) with recently diagnosed ovarian cancer was asked to participate.Sixty-four patients (78%) chose to participate. The three different measurements of participants' information needs revealed only small changes in these needs. The three most important information needs, in all measurements, were information about the likelihood of cure, information about the stage and spreading of the disease, and information about different treatment options. Information regarding sexual attractiveness was the lowest ranked item in all measurements. Regarding subgroups (age, education) the only significant difference throughout all measurements was that younger patients rated issues of sexual attractiveness higher than older patients (p=0.005).In this longitudinal study patients with ovarian cancer ranked information about the disease and its treatment (i.e. likelihood of cure, stage of disease, and treatment options) highest, and information about psychosocial aspects and self-care lowest. These findings are in accordance with the results from studies of women diagnosed with other types of cancer, which used the same methodology. © 2004 Elsevier Ltd. All rights reserved.
13.	Adolfsson, Karin, et al. (författare) Referral of patients with cancer to palliative care: Attitudes, practices and work-related experiences among Swedish physicians 2022 Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 31:6 Tidskriftsartikel (refereegranskat)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.
14.	Omran, Meis, et al. (författare) Whole-Body MRI Surveillance : Baseline Findings in the Swedish Multicentre Hereditary TP53-Related Cancer Syndrome Study (SWEP53) 2022 Ingår i: Cancers. - : MDPI. - 2072-6694. ; 14:2 Tidskriftsartikel (refereegranskat)abstract A surveillance strategy of the heritable TP53-related cancer syndrome (hTP53rc), commonly referred to as the Li–Fraumeni syndrome (LFS), is studied in a prospective observational nationwide multi-centre study in Sweden (SWEP53). The aim of this sub-study is to evaluate whole-body MRI (WB-MRI) regarding the rate of malignant, indeterminate, and benign imaging findings and the associated further workup generated by the baseline examination. Individuals with hTP53rc were enrolled in a surveillance program including annual whole-body MRI (WB-MRI), brain-MRI, and in female carriers, dedicated breast MRI. A total of 68 adults ≥18 years old have been enrolled to date. Of these, 61 fulfilled the inclusion criteria for the baseline MRI scan. In total, 42 showed a normal scan, while 19 (31%) needed further workup, of whom three individuals (3/19 = 16%) were diagnosed with asymptomatic malignant tumours (thyroid cancer, disseminated upper GI cancer, and liver metastasis from a previous breast cancer). Forty-three participants were women, of whom 21 had performed risk-reducing mastectomy prior to inclusion. The remaining were monitored with breast MRI, and no breast tumours were detected on baseline MRI. WB-MRI has the potential to identify asymptomatic tumours in individuals with hTP53rc syndrome. The challenge is to adequately and efficiently investigate all indeterminate findings. Thus, a multidisciplinary team should be considered in surveillance programs for individuals with hTP53rc syndrome.
15.	Nyholm, Tufve, et al. (författare) A national approach for automated collection of standardized and population-based radiation therapy data in Sweden 2016 Ingår i: Radiotherapy and Oncology. - : Elsevier BV. - 0167-8140 .- 1879-0887. ; 119:2, s. 344-350 Tidskriftsartikel (refereegranskat)abstract Purpose: To develop an infrastructure for structured and automated collection of interoperable radiation therapy (RT) data into a national clinical quality registry. Materials and methods: The present study was initiated in 2012 with the participation of seven of the 15 hospital departments delivering RT in Sweden. A national RT nomenclature and a database for structured unified storage of RT data at each site (Medical Information Quality Archive, MIQA) have been developed. Aggregated data from the MIQA databases are sent to a national RT registry located on the same IT platform (INCA) as the national clinical cancer registries. Results: The suggested naming convention has to date been integrated into the clinical workflow at 12 of 15 sites, and MIQA is installed at six of these. Involvement of the remaining 3/15 RT departments is ongoing, and they are expected to be part of the infrastructure by 2016. RT data collection from ARIA (R), Mosaiq (R), Eclipse (TM), and Oncentra (R) is supported. Manual curation of RT-structure information is needed for approximately 10% of target volumes, but rarely for normal tissue structures, demonstrating a good compliance to the RT nomenclature. Aggregated dose/volume descriptors are calculated based on the information in MIQA and sent to INCA using a dedicated service (MIQA2INCA). Correct linkage of data for each patient to the clinical cancer registries on the INCA platform is assured by the unique Swedish personal identity number. Conclusions: An infrastructure for structured and automated prospective collection of syntactically inter operable RT data into a national clinical quality registry for RT data is under implementation. Future developments include adapting MIQA to other treatment modalities (e.g. proton therapy and brachytherapy) and finding strategies to harmonize structure delineations. How the RT registry should comply with domain-specific ontologies such as the Radiation Oncology Ontology (ROO) is under discussion.
16.	Bergengren, Oskar, et al. (författare) Changes in lifestyle among prostate cancer survivors: A nationwide population-based study 2020 Ingår i: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 29:10 Tidskriftsartikel (refereegranskat)abstract Objective Long-term information on lifestyle changes among prostate survivors is lacking. In this nationwide, population-based study we investigated the prevalence of lifestyle changes, factors associated with lifestyle changes and associations between lifestyle changes and general quality of life. Methods All men registered in the National Prostate Cancer Register of Sweden diagnosed in 2008 with low-risk prostate cancer at age 70 years or younger were sent a questionnaire. Logistic regression was used to calculate odds ratios (ORs) with 95% confidence intervals for factors potentially associated with lifestyle change. Results Out of 1288, 1720 men (75%) were responded. A total of 279 (22%) reported a positive lifestyle change regarding diet or exercise. Poor functional outcomes after treatment was associated with exercising less (OR 1.6, 95% CI 1.2-2.1) and less interest in social activities and relationships (OR 1.8, 95% CI 1.5-2.1). Men who exercised more (OR 7.9, 95% CI 4.4-14) and men who had an increased interest in relationships and social activities (OR 5.2, 95% CI 2.1-13) reported higher general quality of life. Conclusions A considerable proportion of men reported making positive lifestyle changes after the prostate cancer diagnosis. The time after diagnosis may be a teachable moment that facilitates lifestyle interventions. Poor functional outcomes after treatment may reduce the willingness to engage in positive lifestyle change, which need be considered when supporting men after treatment. Men who made a positive lifestyle change, regardless of whether it was exercise or regarding relationships and social activities more often reported a high level of general quality of life.
17.	Teede, Helena J, et al. (författare) Recommendations from the 2023 International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome. 2023 Ingår i: Fertility and sterility. - 1556-5653. ; 120:4, s. 767-793 Tidskriftsartikel (refereegranskat)abstract What is the recommended assessment and management of those with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise, and consumer preference?International evidence-based guidelines address prioritized questions and outcomes and include 254 recommendations and practice points, to promote consistent, evidence-based care and improve the experience and health outcomes in PCOS.The 2018 International PCOS Guideline was independently evaluated as high quality and integrated multidisciplinary and consumer perspectives from six continents; it is now used in 196 countries and is widely cited. It was based on best available, but generally very low to low quality, evidence. It applied robust methodological processes and addressed shared priorities. The guideline transitioned from consensus based to evidence-based diagnostic criteria and enhanced accuracy of diagnosis, whilst promoting consistency of care. However, diagnosis is still delayed, the needs of those with PCOS are not being adequately met, evidence quality was low and evidence-practice gaps persist.The 2023 International Evidence-based Guideline update reengaged the 2018 network across professional societies and consumer organizations with multidisciplinary experts and women with PCOS directly involved at all stages. Extensive evidence synthesis was completed. Appraisal of Guidelines for Research and Evaluation-II (AGREEII)-compliant processes were followed. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation and ultimately recommendation strength and diversity and inclusion were considered throughout.This summary should be read in conjunction with the full Guideline for detailed participants and methods. Governance included a six-continent international advisory and management committee, five guideline development groups, and paediatric, consumer, and translation committees. Extensive consumer engagement and guideline experts informed the update scope and priorities. Engaged international society-nominated panels included paediatrics, endocrinology, gynaecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, obesity care, public health and other experts, alongside consumers, project management, evidence synthesis, statisticians and translation experts. Thirty-nine professional and consumer organizations covering 71 countries engaged in the process. Twenty meetings and five face-to-face forums over 12 months addressed 58 prioritized clinical questions involving 52 systematic and 3 narrative reviews. Evidence-based recommendations were developed and approved via consensus across five guideline panels, modified based on international feedback and peer review, independently reviewed for methodological rigour, and approved by the Australian Government National Health and Medical Research Council (NHMRC).The evidence in the assessment and management of PCOS has generally improved in the past five years, but remains of low to moderate quality. The technical evidence report and analyses (∼6000 pages) underpins 77 evidence-based and 54 consensus recommendations, with 123 practice points. Key updates include: i) further refinement of individual diagnostic criteria, a simplified diagnostic algorithm and inclusion of anti-Müllerian hormone (AMH) levels as an alternative to ultrasound in adults only; ii) strengthening recognition of broader features of PCOS including metabolic risk factors, cardiovascular disease, sleep apnea, very high prevalence of psychological features, and high risk status for adverse outcomes during pregnancy; iii) emphasizing the poorly recognized, diverse burden of disease and the need for greater healthcare professional education, evidence-based patient information, improved models of care and shared decision making to improve patient experience, alongside greater research; iv) maintained emphasis on healthy lifestyle, emotional wellbeing and quality of life, with awareness and consideration of weight stigma; and v) emphasizing evidence-based medical therapy and cheaper and safer fertility management.Overall, recommendations are strengthened and evidence is improved, but remain generally low to moderate quality. Significantly greater research is now needed in this neglected, yet common condition. Regional health system variation was considered and acknowledged, with a further process for guideline and translation resource adaptation provided.The 2023 International Guideline for the Assessment and Management of PCOS provides clinicians and patients with clear advice on best practice, based on the best available evidence, expert multidisciplinary input and consumer preferences. Research recommendations have been generated and a comprehensive multifaceted dissemination and translation programme supports the Guideline with an integrated evaluation program.This effort was primarily funded by the Australian Government via the National Health Medical Research Council (NHMRC) (APP1171592), supported by a partnership with American Society for Reproductive Medicine, Endocrine Society, European Society for Human Reproduction and Embryology, and the Society for Endocrinology. The Commonwealth Government of Australia also supported Guideline translation through the Medical Research Future Fund (MRFCRI000266). HJT and AM are funded by NHMRC fellowships. JT is funded by a Royal Australasian College of Physicians (RACP) fellowship. Guideline development group members were volunteers. Travel expenses were covered by the sponsoring organizations. Disclosures of interest were strictly managed according to NHMRC policy and are available with the full guideline, technical evidence report, peer review and responses (www.monash.edu/medicine/mchri/pcos). Of named authors HJT, CTT, AD, LM, LR, JBoyle, AM have no conflicts of interest to declare. JL declares grant from Ferring and Merck; consulting fees from Ferring and Titus Health Care; speaker's fees from Ferring; unpaid consultancy for Ferring, Roche Diagnostics and Ansh Labs; and sits on advisory boards for Ferring, Roche Diagnostics, Ansh Labs, and Gedeon Richter. TP declares a grant from Roche; consulting fees from Gedeon Richter and Organon; speaker's fees from Gedeon Richter and Exeltis; travel support from Gedeon Richter and Exeltis; unpaid consultancy for Roche Diagnostics; and sits on advisory boards for Roche Diagnostics. MC declares travels support from Merck; and sits on an advisory board for Merck. JBoivin declares grants from Merck Serono Ltd.; consulting fees from Ferring B.V; speaker's fees from Ferring Arzneimittell GmbH; travel support from Organon; and sits on an advisory board for the Office of Health Economics. RJN has received speaker's fees from Merck and sits on an advisory board for Ferring. AJoham has received speaker's fees from Novo Nordisk and Boehringer Ingelheim. The guideline was peer reviewed by special interest groups across our 39 partner and collaborating organizations, was independently methodologically assessed against AGREEII criteria and was approved by all members of the guideline development groups and by the NHMRC.
18.	Islind, Anna Sigridur, 1985-, et al. (författare) Individualized blended care for patients with colorectal cancer: the patient's view on informational support 2021 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 29:6, s. 3061-3067 Tidskriftsartikel (refereegranskat)abstract Purpose The number of colorectal cancer patient survivors is increasing. Information and support during and after treatment are requested by patients, but questions remain on what to provide. The aim of this study was to understand what informational needs colorectal cancer patients and survivors have, with a focus on the potential support given by patient peers and the use of blended care. Methods A qualitative study using focus groups was conducted with patients diagnosed at the same hospital at least one year prior to the initiation of the study. The focus group interviews were transcribed verbatim and analyzed using deductive content analysis. Results The need for informational support varied over time and depended on individual patient characteristics. Timing was crucial and patients requested options of blended care and informational support after treatment cessation. The patients felt alone after treatment and requested assistance in communication with their next-of-kin. They also identified the value of peer support, especially to contextualize knowledge provided by healthcare. Conclusion This study showed a need for focus on individualized informational support. Blended care through integrating communication with peers online could be one way to support patients, both to enable shared decision-making as well as to provide person-centered care.
19.	Hoff, Lena, et al. (författare) In the shadow of bad news - views of patients with acute leukaemia, myeloma or lung cancer about information, from diagnosis to cure or death 2007 Ingår i: BMC Palliative Care. - 1472-684X. ; 6:Article nr. 1 Tidskriftsartikel (refereegranskat)abstract Many studies have been published about giving and receiving bad messages. However, only a few of them have followed the patients all the way through a disease as is done in this study. Many studies have been written about patients' coping strategies. In this study we will keep within the bounds of coping through information only. The aim of the study is to investigate patients' views of information during the trajectory of their disease, whether their reactions differ from each other and whether they differ in different phases of the disease.
20.	Browall, Maria, et al. (författare) The course of health related quality of life in postmenopausal women with breast cancer from breast surgery and up to five years post-treatment 2013 Ingår i: Breast. - : Elsevier. - 0960-9776 .- 1532-3080. ; 49, s. S344-S345 Tidskriftsartikel (refereegranskat)abstract Background: Previous studies include too few patients over 70 years to be able to assess treatment effects on Health Related Quality Of Life (HRQOL) in the older age group. We aimed to follow HRQOL in postmenopausal women (55-80 years) with breast cancer receiving adjuvant treatment, until five years post-treatment, and compare with a general population.Patients and methods: The patient sample included 150 women (adjuvant CT n=75 and RT n=75) and two reference samples from the Swedish SF-36 norm database.Results: Data from baseline showed significantly higher levels of physical functioning and general health among the patients compared to the reference sample, and significantly lower levels of bodily pain, emotional role functioning and mental health. Longitudinal analyses showed significant changes in all scales, and three different patterns (a decrease-stable, a decrease-increase, and a stable- increase pattern) were identified.Conclusion: Postmenopausal women seem to successfully manage the effects of adjuvant treatment on HRQOL.
21.	Rexhepi, Hanife, 1984-, et al. (författare) Online electronic healthcare records : Comparing the views of cancer patients and others 2020 Ingår i: Health Informatics Journal. - : Sage Publications. - 1460-4582 .- 1741-2811. ; 26:4, s. 2915-2929 Tidskriftsartikel (refereegranskat)abstract This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare.
22.	Deribe, Leul, et al. (författare) Stress and coping strategies among parents of children with cancer at Tikur Anbessa Specialized Hospital paediatric oncology unit, Ethiopia: a phenomenological study 2023 Ingår i: BMJ. British Medical Journal. - : BMJ. - 0959-8146. ; 13:e065090, s. 1-13 Tidskriftsartikel (refereegranskat)abstract Objective This study explores sources of stress, conditions that help reduce stress levels and coping strategies among parents of children with cancer receiving chemotherapy at Tikur Anbessa Specialized Hospital (TASH) in Ethiopia. Design A qualitative phenomenological approach was used. Setting Parents of children receiving chemotherapy at the TASH paediatric oncology unit. Participants Fifteen semistructured in-depth interviews were conducted with nine mothers and six fathers of children with cancer from November 2020 to January 2021. Results Sources of stress related to child’s health condition as the severity of the child’s illness, fear of treatment side effects and loss of body parts were identified. Parents mentioned experiencing stress arising from limited access to health facilities, long waiting times, prolonged hospital stays, lack of chemotherapy drugs, and limited or inadequate information about their child’s disease condition and treatment. Other sources of stress were insufficient social support, stigmatisation of cancer and financial problems. Conditions decreasing parents’ stress included positive changes in the child’s health, receiving cancer treatment and access to drugs. Receiving counselling from healthcare providers, getting social support and knowing someone who had a positive treatment outcome also helped reduce stress. Coping strategies used by parents were religious practices including prayer, crying, accepting the child’s condition, denial and communication with health providers. Conclusion The main causes of stress identified by parents of children with cancer in Ethiopia were the severity of their child’s illness, expectations of poor treatment outcomes, unavailability of cancer treatment services and lack of social/financial support. Measures that should be considered to reduce parents’ stress include providing psycho-oncological care for parents and improving the counselling available to parents concerning the nature of the child’s illness, its treatment, diagnostic procedures and treatment side effects. It may also be helpful to establish and strengthen family support groups and parent-to-parent communication, improve the availability of chemotherapy drugs and offer more education on coping strategies.
23.	Hellstrand Tang, Ulla, 1956, et al. (författare) Exploring the Role of Complexity in Health Care Technology Bottom-Up Innovations : Multiple-Case Study Using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability Complexity Assessment Tool 2024 Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 11:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: New digital technology presents new challenges to health care on multiple levels. There are calls for further research that considers the complex factors related to digital innovations in complex health care settings to bridge the gap when moving from linear, logistic research to embracing and testing the concept of complexity. The nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework was developed to help study complexity in digital innovations.OBJECTIVE: This study aims to investigate the role of complexity in the development and deployment of innovations by retrospectively assessing challenges to 4 digital health care innovations initiated from the bottom up.METHODS: A multicase retrospective, deductive, and explorative analysis using the NASSS complexity assessment tool LONG was conducted. In total, 4 bottom-up innovations developed in Region Västra Götaland in Sweden were explored and compared to identify unique and shared complexity-related challenges.RESULTS: The analysis resulted in joint insights and individual learning. Overall, the complexity was mostly found outside the actual innovation; more specifically, it related to the organization's readiness to integrate new innovations, how to manage and maintain innovations, and how to finance them. The NASSS framework sheds light on various perspectives that can either facilitate or hinder the adoption, scale-up, and spread of technological innovations. In the domain of condition or diagnosis, a well-informed understanding of the complexity related to the condition or illness (diabetes, cancer, bipolar disorders, and schizophrenia disorders) is of great importance for the innovation. The value proposition needs to be clearly described early to enable an understanding of costs and outcomes. The questions in the NASSS complexity assessment tool LONG were sometimes difficult to comprehend, not only from a language perspective but also due to a lack of understanding of the surrounding organization's system and its setting.CONCLUSIONS: Even when bottom-up innovations arise within the same support organization, the complexity can vary based on the developmental phase and the unique characteristics of each project. Identifying, defining, and understanding complexity may not solve the issues but substantially improves the prospects for successful deployment. Successful innovation within complex organizations necessitates an adaptive leadership and structures to surmount cultural resistance and organizational impediments. A rigid, linear, and stepwise approach risks disregarding interconnected variables and dependencies, leading to suboptimal outcomes. Success lies in embracing the complexity with its uncertainty, nurturing creativity, and adopting a nonlinear methodology that accommodates the iterative nature of innovation processes within complex organizations.
24.	Solinas, Giovanni, et al. (författare) An adipoincretin effect links adipostasis with insulin secretion. 2024 Ingår i: Trends in endocrinology and metabolism: TEM. - 1879-3061. ; 35:6, s. 466-477 Forskningsöversikt (refereegranskat)abstract The current paradigm for the insulin system focuses on the phenomenon of glucose-stimulated insulin secretion and insulin action on blood glucose control. This historical glucose-centric perspective may have introduced a conceptual bias in our understanding of insulin regulation. A body of evidence demonstrating that in vivo variations in blood glucose and insulin secretion can be largely dissociated motivated us to reconsider the fundamental design of the insulin system as a control system for metabolic homeostasis. Here, we propose that a minimal glucose-centric model does not accurately describe the physiological behavior of the insulin system and propose a new paradigm focusing on the effects of incretins, arguing that under fasting conditions, insulin is regulated by an adipoincretin effect.
25.	Ali, Muhaddisa Barat, 1986, et al. (författare) A novel federated deep learning scheme for glioma and its subtype classification 2023 Ingår i: Frontiers in Neuroscience. - 1662-4548 .- 1662-453X. ; 17 Tidskriftsartikel (refereegranskat)abstract Background: Deep learning (DL) has shown promising results in molecular-based classification of glioma subtypes from MR images. DL requires a large number of training data for achieving good generalization performance. Since brain tumor datasets are usually small in size, combination of such datasets from different hospitals are needed. Data privacy issue from hospitals often poses a constraint on such a practice. Federated learning (FL) has gained much attention lately as it trains a central DL model without requiring data sharing from different hospitals. Method: We propose a novel 3D FL scheme for glioma and its molecular subtype classification. In the scheme, a slice-based DL classifier, EtFedDyn, is exploited which is an extension of FedDyn, with the key differences on using focal loss cost function to tackle severe class imbalances in the datasets, and on multi-stream network to exploit MRIs in different modalities. By combining EtFedDyn with domain mapping as the pre-processing and 3D scan-based post-processing, the proposed scheme makes 3D brain scan-based classification on datasets from different dataset owners. To examine whether the FL scheme could replace the central learning (CL) one, we then compare the classification performance between the proposed FL and the corresponding CL schemes. Furthermore, detailed empirical-based analysis were also conducted to exam the effect of using domain mapping, 3D scan-based post-processing, different cost functions and different FL schemes. Results: Experiments were done on two case studies: classification of glioma subtypes (IDH mutation and wild-type on TCGA and US datasets in case A) and glioma grades (high/low grade glioma HGG and LGG on MICCAI dataset in case B). The proposed FL scheme has obtained good performance on the test sets (85.46%, 75.56%) for IDH subtypes and (89.28%, 90.72%) for glioma LGG/HGG all averaged on five runs. Comparing with the corresponding CL scheme, the drop in test accuracy from the proposed FL scheme is small (−1.17%, −0.83%), indicating its good potential to replace the CL scheme. Furthermore, the empirically tests have shown that an increased classification test accuracy by applying: domain mapping (0.4%, 1.85%) in case A; focal loss function (1.66%, 3.25%) in case A and (1.19%, 1.85%) in case B; 3D post-processing (2.11%, 2.23%) in case A and (1.81%, 2.39%) in case B and EtFedDyn over FedAvg classifier (1.05%, 1.55%) in case A and (1.23%, 1.81%) in case B with fast convergence, which all contributed to the improvement of overall performance in the proposed FL scheme. Conclusion: The proposed FL scheme is shown to be effective in predicting glioma and its subtypes by using MR images from test sets, with great potential of replacing the conventional CL approaches for training deep networks. This could help hospitals to maintain their data privacy, while using a federated trained classifier with nearly similar performance as that from a centrally trained one. Further detailed experiments have shown that different parts in the proposed 3D FL scheme, such as domain mapping (make datasets more uniform) and post-processing (scan-based classification), are essential.
26.	Wilms, Torben, 1973- (författare) Squamous cell carcinoma of the head and neck, focusing on Epstein-Barr-virus, programmed cell death ligand 1 and serum lipoproteins 2021 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Background: Squamous cell carcinoma of the head and neck (SCCHN)comprises a large group of tumours including the oral cavity and nasopharyngealarea, and typically affects older males in association with alcohol/tobacco usage.Within the oral cavity, the mobile tongue is the most common site for tumourdevelopment. The incidence of squamous cell carcinoma of the oral tongue(SCCOT) is increasing in younger people, which has been suggested to associatewith other than the traditional risk factors for this disease. Two common humanoncogenic viruses, human papillomavirus (HPV) and Epstein-Barr virus (EBV)are connected to certain types of SCCHN, in oropharynx and nasopharynxrespectively. The receptor programmed cell death 1 (PD)-1 and its ligandprogrammed cell death ligand 1 (PD-L1) are particularly relevant in immunecheckpoint control, and elevated levels have been seen in various cancer types. Alink between hyperlipidemia and cancer risk has previously been suggested. Theaim of this thesis was to investigate risk factors and prognostic features forSCCHN, by focusing on EBV, PD-L1 and serum lipoproteins.Materials and methods: Ninety-eight cases of SCCOT and 15 cases of tonsillarsquamous cell carcinoma were examined for the presence of EBV-encodedribonucleic acids (EBERs), EBV deoxyribonucleic acid (DNA) and the proteinEBV-encoded nuclear antigen-1 (EBNA-1), using in situ hybridisation,polymerase chain reaction (PCR) and immunohistochemistry respectively. Onehundred and one cases of SCCOT were examined for expression of PD-L1 intumour and surrounding immune cells using Ventana SP263immunohistochemistry assay and a QuickScore (QS) method. An estimation oftumour-infiltrating immune cells was also performed in 25 of the patients.Circulating levels of PD-L1 were measured using an electrochemiluminescenceassay platform in serum from 30 patients. Finally, serum samples from 106patients and 28 healthy controls were investigated for levels of total cholesterol,low-density lipoprotein (LDL), high-density lipoprotein (HDL), triglycerides andlipoprotein(a).Results: In the first study, using an in situ hybridisation kit no EBER transcriptswere detected. No EBV DNA was identified with PCR analysis, andimmunohistochemistry for EBNA-1 was also negative. In the second study, highertumour cell PD-L1 levels were found in females than males (p = 0.019). Forpatients with low PD-L1 in tumour cells, better survival was shown in males thanfemales (overall survival p = 0.021, disease-free survival p = 0.020). Tumourinfiltrating natural killer (NK) T cells, immature dendritic cells (DCs) and M1macrophages correlated positively with tumour cell PD-L1 (p < 0.05). In the laststudy, the only lipoprotein showing significant difference in concentration iiibetween healthy controls and patients was HDL (p = 0.012). Kaplan-Meiersurvival curves showed that patients with high levels of total cholesterol or LDLhad better survival than patients with normal levels (p = 0.028 and p = 0.007respectively). Adjusting for the effects of age at diagnosis, TNM stage and weightchange, multivariate Cox regression models showed LDL to be an independentprognostic factor for both overall (p = 0.010) and disease-free survival (p =0.018).Conclusion: We excluded EBV as a potential player in SCCOT in both old andyoung patients and highlight the importance of appropriate controls for EBVencoded RNA in-situ hybridization (EBER-ISH) when investigating EBV inhuman diseases. Regarding PD-L1, our data supported the significance of genderon tumour cell PD-L1 expression and demonstrated combined effects of genderand PD-L1 levels on clinical outcome in patients with SCCOT. Data also indicatedthe involvement of specific immune cell types in PD-L1-regulated immuneevasion. Looking at serum lipoproteins, we found high LDL levels to be beneficialfor survival outcome in patients with SCCHN. Furthermore, the use of cholesterollowering medicine for prevention or management of SCCHN needs to be carefullyevaluated.
27.	Bylund Grenklo, Tove, et al. (författare) Unresolved grief and its consequences : A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier 2016 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 24:7, s. 3095-3103 Tidskriftsartikel (refereegranskat)abstract PurposeThe early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer.MethodsIn a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. Results Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief. statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. Conclusions Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.
28.	Baan, Annika, 2007, et al. (författare) A qualitative study of organizational background and developments at cancer genetic centres in Sweden 2007 Ingår i: European Journal of Cancer Supplements. - 1359-6349. ; 5:4 Tidskriftsartikel (refereegranskat)
29.	Weibel, Mette, et al. (författare) Robots2School : telepresence-mediated learning in the hybrid classroom – experiences in education support for children during cancer treatment: a qualitative study 2024 Ingår i: Education and Information Technologies. - New York, NY : Springer. - 1360-2357 .- 1573-7608. ; 29, s. 11339-11366 Tidskriftsartikel (refereegranskat)abstract Children with cancer experience recurring hospitalizations and isolation during treatment, which affect their school attendance. This study explores experiences of children with cancer, their classmates, and teachers with using the telepresence robot as a learning mediator in the hybrid classroom during treatment periods. 31 children with cancer (aged 7–17 years), 30 teachers, and 118 classmates participated in interviews and 19 h of participant observations were undertaken in nine classrooms. The Agential Realism Theory and Situational Analysis framed the data analysis. There was a single overarching theme, “Telepresence robot didactic,“ and five sub-themes (Telepresence mediated learning, school-home collaboration, hybrid robot teaching, intra-actions in class, and inclusive spatiality). This study advocates the complexity of telepresence robot didactics, emphasizing that numerous human and other factors must intra-act and work simultaneously to achieve optimal learning conditions for children during cancer treatment. This includes considerations such as modality availability for the remote child; the teacher’s understanding of telepresence robot didactic and hybrid learning; the classmate’s ability to involve the remote child in groupwork; the child’s own treatment protocol, the robot’s functionalities, and spatiality in the class. Strategies for use and the systematic surveillance of telepresence robots are needed to ensure that children during cancer treatment do not lag in academic achievement. This study proposes that children with cancer can continue participating in class while hospitalized or isolated and consequently reduce social and academic setbacks. © 2023, The Author(s).
30.	Carlsson, Maria, 1958-, et al. (författare) Treatment modality affects long-term quality of life in gynaecological cancer. 2000 Ingår i: Anticancer Research. - : The International Institute of Anticancer Research. - 0250-7005 .- 1791-7530. ; 20:1B, s. 563-568 Tidskriftsartikel (refereegranskat)abstract In order to survey the side effects after cancer treatment, quality of life data were collected from females in clinical remission. MATERIALS AND METHODS The study was cross-sectional; every patient that visited the outpatient clinic during a period of three months was asked to anonymously complete the EORTC QLQ-C30 questionnaire and five additional specific questions related to gynaecological cancer. RESULTS In total, 235 patients (90%) returned the questionnaire. In general, both the levels of functioning and symptomatology were time-dependent. Patients with short treatment-free intervals reported more problems than the others. When using treatment modality as an independent variable in the statistical calculations, a treatment-related effect on functioning and symptomatology was demonstrated (p < 0.05 to p < 0.001). Patients previously treated with chemotherapy had poorer role- and cognitive functioning and more problems with fatigue, nausea, vomiting, dyspnoea, constipation and financial problems, compared with those not treated with chemotherapy (p < 0.05 to p < 0.01). Those patients who had been treated with external radiotherapy and/or brachytherapy had significantly more problems with flatulence and diarrhoea (p < 0.05 to p < 0.001). In conclusion, patients who underwent treatment for gynaecological cancer reported long-term side effects also many years after finishing treatment. The problems where related to treatment modality which should be considered, especially when planning adjuvant treatment.
31.	Tzortzatos, G., et al. (författare) The gynecological surveillance of women with Lynch Syndrome in Sweden 2015 Ingår i: Gynecologic Oncology. - : Elsevier BV. - 0090-8258 .- 1095-6859. ; 25:9, s. 1111-1111 Tidskriftsartikel (refereegranskat)abstract Objective. Women with Lynch syndrome (LS) have up to a 60% lifetime risk of endometrial cancer (EC) and up to a 24% risk of ovarian cancer (OC). Gynecological surveillance is recommended, but the benefit and how it should be performed remain unclear. The purpose of this study was to assess diagnostic modalities for gynecological screening of LS patients in Sweden and clinical outcome. Methods. A retrospective nationwide study of 170 women with molecularly confirmed LS. Data including gynecological LS screening history, biopsy results (if any), genetic records, number of screening visits, results from screening including transvaginal ultrasound (TVUS), endometrial biopsy (EB), blood test for tumor marker cancer antigen (CA) 125, prophylactic surgery including age at procedure, and setting from which screening data were obtained from medical records. Results. A total of 117 women were eligible for gynecological screening and of these, 86 patients attended screening visits. Of these, 41 underwent prophylactic hysterectomy and/or bilateral salpingo-oophorectomy. Two patients (4.9%) were diagnosed with EC and two (4.9%) with precancerous lesions in conjunction with prophylactic surgery. Total incidence of gynecological cancer in the surveillance group (45 women) was 20% EC, 4% OC. Five patients had endometrial cancer or complex hyperplasia with atypia (n = 2) detected by endometrial biopsy. Four additional cases were detected due to interval bleeding. Both cases of ovarian cancer were detected by transvaginal ultrasound in patients with ovarian cysts under surveillance. The youngest woman with endometrial cancer was diagnosed at 35 years of age, before she was aware of her diagnosis of Lynch syndrome. Conclusions. Gynecological surveillance of women with Lynch syndrome may lead to earlier detection of precancerous lesions, which might have some impact on the morbidity from endometrial cancer although further studies are needed to prove this. Prophylactic hysterectomy with or without bilateral salpingo-oophorectomy reduces the cancer incidence. A practical approach to surveillance in Lynch syndrome women would be to offer annual surveillance beginning at age 30 years including probably both TVUS and EB in order to increase diagnostic yield with prospective data registry for follow-up studies. Prophylactic surgery could be performed at a suitable age after childbearing to obtain a balance between reducing the risk of cancer and minimizing long-term complications from premature menopause.
32.	Andersson, Andreas, et al. (författare) Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden 2020 Ingår i: Hereditary Cancer in Clinical Practice. - : Springer Science and Business Media LLC. - 1731-2302 .- 1897-4287. ; 18:1 Tidskriftsartikel (refereegranskat)abstract Background Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public's opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. Methods A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson's chi-square (chi(2)) test. Results Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (chi 2,p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, chi 2,p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%). Conclusions In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.
33.	Bylund-Grenklo, Tove, et al. (författare) Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers 2021 Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20 Tidskriftsartikel (refereegranskat)abstract Background Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss. Methods We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression. Results Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent. Conclusion More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.
34.	Grynne, A., et al. (författare) Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer : a deductive interview study 2023 Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Individuals undergoing radiation therapy for breast cancer frequently request information before, throughout and after the treatment as a means to reduce distress. Nevertheless, the provision of information to meet individuals needs from their level of health literacy is often overlooked. Thus, individuals information needs are often unmet, leading to reports of discontent. Internet and digital information technology has significantly augmented the available information and changed the way in which persons accesses and comprehends information. As health information is no longer explicitly obtained from healthcare professionals, it is essential to examine the sequences of the health information process in general, and in relation to health literacy. This paper reports on qualitative interviews, targeting women diagnosed with breast cancer who were given access to a health information technology tool, Digi-Do, before commencing radiation therapy, during, and after treatment. METHODS: A qualitative research design, inspired by the integrated health literacy model, was chosen to enable critical reflection by the participating women. Semi-structured interviews were conducted with 15 women with access to a digital information tool, named Digi-Do, in addition to receiving standard information (oral and written) before commencing radiation therapy, during, and after treatment. A deductive thematic analysis process was conducted. RESULTS: The results demonstrate how knowledge, competence, and motivation influence women's experience of the health information process. Three main themes were found: Meeting interactive and personal needs by engaging with health information; Critical recognition of sources of information; and Capability to communicate comprehended health information. The findings reflect the women's experience of the four competencies: to access, understand, appraise, and apply, essential elements of the health information process. CONCLUSIONS: We can conclude that there is a need for tailored digital information tools, such as the Digi-Do, to enable iterative access and use of reliable health information before, during and after the radiation therapy process. The Digi-Do can be seen as a valuable complement to the interpersonal communication with health care professionals, facilitating a better understanding, and enabling iterative access and use of reliable health information before, during and after the radiotherapy treatment. This enhances a sense of preparedness before treatment starts.
35.	Mazzoni, Anne-Sophie, et al. (författare) The Role of Long-Term Physical Activity in Relation to Cancer-Related Health Outcomes : A 12-Month Follow-up of the Phys-Can RCT 2023 Ingår i: Integrative Cancer Therapies. - : Sage Publications. - 1534-7354 .- 1552-695X. ; 22 Tidskriftsartikel (refereegranskat)abstract Purpose:While moderate-to-vigorous intensity physical activity (MVPA) is associated with various health improvements shortly after completion of exercise interventions, it remains unclear which health benefits can be expected when MVPA levels are maintained in the long term in cancer survivors. We aimed to assess the associations of (1) MVPA level at 12-month follow-up and (2) long-term MVPA patterns (from immediately post-intervention to 12-month follow-up) with different cancer-related health outcomes. Methods:In the Physical training and Cancer (Phys-Can) RCT, 577 participants diagnosed with breast (78%), prostate (19%), or colorectal (3%) cancer were randomized to 6 months of exercise during curative cancer treatment. Accelerometer-assessed physical activity and outcome data (ie, cancer-related fatigue, health-related quality of life [HRQoL], anxiety and depression, functioning in daily life, cardiorespiratory fitness, sedentary time and sleep) were collected immediately post-intervention and at 12-month follow-up. Based on the sample's median of MVPA immediately post-intervention (65 minutes/day) and the changes between the 2 measurement points, 4 categories with different long-term MVPA patterns were created: High & Increasing, High & Decreasing, Low & Increasing, and Low & Decreasing. Multiple linear regression analyses were performed for the analyses. Results:A total of 353 participants were included in the analyses. At 12-month follow-up, a higher MVPA level was significantly associated with lower fatigue in 3 domains (general fatigue [& beta; = -.33], physical fatigue [& beta; = -.53] and reduced activity [& beta; = -.37]), higher cardiorespiratory fitness (& beta; = .34) and less sedentary time (& beta; = -.35). For long-term MVPA patterns, compared to the participants in the "Low & Decreasing" category, those in the "High & Increasing" category reported significantly lower fatigue in 3 domains (general fatigue [& beta; = -1.77], physical fatigue [& beta; = -3.36] and reduced activity [& beta; = -1.58]), higher HRQoL (& beta; = 6.84) and had less sedentary time (& beta; = -1.23). Conclusion:Our results suggest that long-term physical activity is essential for improving health outcomes post-intervention in cancer survivors. Cancer survivors, including those who reach recommended MVPA levels, should be encouraged to maintain or increase MVPA post-intervention for additional health benefits.
36.	Benfeitas, Rui, et al. (författare) Characterization of heterogeneous redox responses in hepatocellular carcinoma patients using network analysis 2019 Ingår i: Ebiomedicine. - : Elsevier BV. - 2352-3964. ; 40, s. 471-487 Tidskriftsartikel (refereegranskat)abstract Background: Redox metabolism is often considered a potential target for cancer treatment, but a systematic examination of redox responses in hepatocellular carcinoma (HCC) is missing. Methods: Here, we employed systems biology and biological network analyses to reveal key roles of genes associated with redox metabolism in HCC by integrating multi-omics data. Findings: We found that several redox genes, including 25 novel potential prognostic genes, are significantly co-expressed with liver-specific genes and genes associated with immunity and inflammation. Based on an integrative analysis, we found that HCC tumors display antagonistic behaviors in redox responses. The two HCC groups are associated with altered fatty acid, amino acid, drug and hormone metabolism, differentiation, proliferation, and NADPH-independent vs - dependent antioxidant defenses. Redox behavior varies with known tumor subtypes and progression, affecting patient survival. These antagonistic responses are also displayed at the protein and metabolite level and were validated in several independent cohorts. We finally showed the differential redox behavior using mice transcriptomics in HCC and noncancerous tissues and associated with hypoxic features of the two redox gene groups. Interpretation: Our integrative approaches highlighted mechanistic differences among tumors and allowed the identification of a survival signature and several potential therapeutic targets for the treatment of HCC.
37.	Wode, Kathrin, et al. (författare) Cancer patients' use of complementary and alternative medicine in Sweden : a cross-sectional study 2019 Ingår i: BMC Complementary and Alternative Medicine. - : BioMed Central (BMC). - 1472-6882. ; 19 Tidskriftsartikel (refereegranskat)abstract Background: Access to and advice on Complementary and Alternative Medicine (CAM) are uncommon within Swedish conventional cancer care and little is known about cancer patients' own use of CAM. The aim of this cross-sectional study was to explore Swedish cancer patients patterns of CAM use, their experiences and preferences.Methods. Questionnaires were distributed consecutively to 1297 cancer patients at a university hospital's out-patient oncology units. The response rate was 58% (n=755). Descriptive statistics were used to analyze the survey data. A logistic regression model was used to investigate the association between CAM use and gender, age and level of education. Open-ended responses were analyzed, using qualitative content analysis.Results: Lifetime CAM use was reported by 34% (n=256), and 26% (n=198) used CAM after cancer diagnosis. Being female, younger and having higher education predicted CAM use. Most commonly used methods were natural products including vitamins and mineralsand relaxation. Main reasons for CAM use were improvement of physical, general and emotional wellbeing and increasing the body's ability to fight cancer. Satisfaction with CAM usage was generally high. Reported adverse effects were few and mild; 54% of users spent <50 Euro a month on CAM. One third had discussed their CAM use with cancer care providers. More than half of all participants thought that cancer care providers should be able to discuss (58%) and to consider (54%) use of CAM modalities in cancer care.Conclusions: Despite limited access and advice within conventional cancer care, one fourth of Swedish cancer patients use CAM. The insufficient patient-provider dialogue diverges with most patients' wish for professional guidance in their decisions and integration of CAM modalities in conventional cancer care. Concurrent and multimodal CAM use implies challenges and possibilities for cancer care that need to be considered.
38.	Ge, Chenjie, 1991, et al. (författare) Enlarged Training Dataset by Pairwise GANs for Molecular-Based Brain Tumor Classification 2020 Ingår i: IEEE Access. - 2169-3536 .- 2169-3536. ; 8:1, s. 22560-22570 Tidskriftsartikel (refereegranskat)abstract This paper addresses issues of brain tumor subtype classification using Magnetic Resonance Images (MRIs) from different scanner modalities like T1 weighted, T1 weighted with contrast-enhanced, T2 weighted and FLAIR images. Currently most available glioma datasets are relatively moderate in size, and often accompanied with incomplete MRIs in different modalities. To tackle the commonly encountered problems of insufficiently large brain tumor datasets and incomplete modality of image for deep learning, we propose to add augmented brain MR images to enlarge the training dataset by employing a pairwise Generative Adversarial Network (GAN) model. The pairwise GAN is able to generate synthetic MRIs across different modalities. To achieve the patient-level diagnostic result, we propose a post-processing strategy to combine the slice-level glioma subtype classification results by majority voting. A two-stage course-to-fine training strategy is proposed to learn the glioma feature using GAN-augmented MRIs followed by real MRIs. To evaluate the effectiveness of the proposed scheme, experiments have been conducted on a brain tumor dataset for classifying glioma molecular subtypes: isocitrate dehydrogenase 1 (IDH1) mutation and IDH1 wild-type. Our results on the dataset have shown good performance (with test accuracy 88.82%). Comparisons with several state-of-the-art methods are also included.
39.	Armuand, G. M., et al. (författare) Physicians' self-reported practice behaviour regarding fertility-related discussions in paediatric oncology in Sweden 2017 Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 26:10, s. 1684-1690 Tidskriftsartikel (refereegranskat)abstract OBJECTIVE: The aim of this study was to investigate practice behaviours of Swedish physicians with regard to discussing the impact of cancer treatment on fertility with paediatric oncology patients and their parents, and to identify factors associated with such discussions.METHODS: A cross-sectional survey study was conducted targeting all physicians in Sweden working in paediatric oncology care settings. Participants responded to a questionnaire measuring practice behaviour, attitudes, barriers, and confidence in knowledge. Multivariable logistic regression was used to determine factors associated with seldom discussing fertility.RESULTS: More than half of the physicians routinely talked with their patients/parents about the treatment's potential impact on fertility (male patients: 62%; female patients: 57%; P = 0.570). Factors associated with less frequently discussing fertility with patients/parents were working at a non-university hospital (male patients: OR 11.49, CI 1.98-66.67; female patients: OR 33.18, CI 4.06-271.07), concerns that the topic would cause worry (male patients: OR 8.23, CI 1.48-45.89; female patients: OR 12.38, CI 1.90-80.70), and perceiving the parents as anxious (male patients: OR 7.18, CI 1.20-42.85; female patients: OR 11.65, CI 1.32-103.17).CONCLUSIONS: Based on our findings, we recommend structured training in how to communicate about fertility issues in stressful situations, which in turn might increase fertility-related discussions in paediatric oncology.
40.	Birgisdóttir, Dröfn (författare) LOSING A PARENT TO CANCER AS A TEENAGER - Family cohesion, grief, long-term health and wellbeing and the development of a comprehensive care guide for personalized palliative care 2022 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)
41.	Adolfsson, Jan, et al. (författare) Clinical characteristics and primary treatment of prostate cancer in Sweden between 1996 and 2005 : Data from the national prostate cancer register in Sweden 2007 Ingår i: Scandinavian Journal of Urology and Nephrology. - Stockholm : Taylor & Francis. - 0036-5599 .- 1651-2065. ; 41:6, s. 456-477 Tidskriftsartikel (refereegranskat)abstract Objective. The incidence of prostate cancer is rising rapidly in Sweden and there is a need to better understand the pattern of diagnosis, tumor characteristics and treatment. Material and methods. Between 1996 and 2005, all new cases of adenocarcinoma of the prostate gland were intended to be registered in the National Prostate Cancer Register (NPCR). This register contains information on diagnosing unit, date of diagnosis, cause of diagnosis, tumor grade, tumor stage according to the TNM classification in force, serum prostate-specific antigen (PSA) levels at diagnosis and primary treatment given within the first 6 months after diagnosis. Results. In total, 72 028 patients were registered, comprising >97% of all pertinent incident cases of prostate cancer in the Swedish Cancer Register (SCR). During the study period there was a considerable decrease in median age at the time of diagnosis, a stage migration towards smaller tumors, a decrease in median serum PSA values at diagnosis, a decrease in the age-standardized incidence rate of men diagnosed with distant metastases or with a PSA level of >100 ng/ml at diagnosis and an increase in the proportion of tumors with Gleason score ≤6. Relatively large geographical differences in the median age at diagnosis and the age-standardized incidence of cases with category T1c tumors were observed. Treatment with curative intent increased dramatically and treatment patterns varied according to geographical region. In men with localized tumors and a PSA level of <20 ng/ml at diagnosis, expectant treatment was more commonly used in those aged ≥75 years than in those aged <75 years. Also, the pattern of endocrine treatment varied in different parts of Sweden. Conclusions. All changes in the register seen over time are consistent with increased diagnostic activity, especially PSA testing, resulting in an increased number of cases with early disease, predominantly tumors in category T1c. The patterns of diagnosis and treatment of prostate cancer vary considerably in different parts of Sweden. The NPCR continues to be an important source for research, epidemiological surveillance of the incidence, diagnosis and treatment of prostate cancer
42.	Yu, Di, 1985- (författare) Adenovirus for Cancer Therapy : With a Focus on its Surface Modification 2013 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Adenovirus serotype 5 (Ad5) is widely used as an oncolytic agent for cancer therapy. However, its infectivity is highly dependent on the expression level of coxsackievirus-adenovirus receptor (CAR) on the surface of tumor cells. We engineered Ad5 virus with the protein transduction domain (PTD) from the HIV-1 Tat protein (Tat-PTD) inserted in the hypervariable region 5 (HVR5) of the hexon protein in the virus capsid. Tat-PTD-modified Ad5 shows a dramatically increased transduction level of CAR-negative cells and bypassed fiber-mediated transduction. It also overcomes the fiber-masking problem, which is caused by release of excess fiber proteins from infected cells. To achieve specific viral replication in neuroblastoma and neuroendocrine tumor cells, we identified the secretogranin III (SCG3) promoter and constructed an adenovirus Ad5PTD(ASH1-SCG3-E1A) wherein E1A gene expression is controlled by the SCG3 promoter and the achaete-scute complex homolog 1 (ASH1) enhancer. This virus shows selective and efficient killing of neuroblastoma cell lines in vitro, and delays human neuroblastoma xenograft tumor growth on nude mice. To further enhance the viral oncolytic efficacy, we also switched the fiber 5 to fiber 35 to generate Ad5PTDf35. This vector shows dramatically increased transduction capacity of primary human cell cultures including hematopoietic cells and their derivatives, pancreatic islets and exocrine cells, mesenchymal stem cells and primary tumor cells including primary cancer initiating cells. Ad5PTDf35-based adenovirus could be a useful platform for gene delivery and oncolytic virus development. Viral oncolysis alone cannot completely eradicate tumors. Therefore, we further armed the Ad5PTDf35-D24 virus with a secreted form of Helicobacter pylori Neutrophil Activating Protein (HP-NAP). Expression of HP-NAP recruits neutrophils to the site of infection, activates an innate immune response against tumor cells and provokes a Th1-type adaptive immune response. Established tumor on nude mice could be completely eradicated in some cases after treatment with this virus and the survival of mice was significantly prolonged.
43.	Sveen, Josefin, et al. (författare) They still grieve : a nationwide follow‐up of young adults 2–9 years after losing a sibling to cancer 2014 Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 23:6, s. 658-664 Tidskriftsartikel (refereegranskat)abstract Objectives: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.Methods: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.Results: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.Conclusion: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Keywords: bereavement; cancer; grief; oncology; sibling loss; young adult loss.
44.	Holtedahl, K., et al. (författare) Abdominal symptoms in general practice: Frequency, cancer suspicions raised, and actions taken by GPs in six European countries. Cohort study with prospective registration of cancer 2017 Ingår i: Heliyon. - : Elsevier BV. - 2405-8440. ; 3:6 Tidskriftsartikel (refereegranskat)abstract Background Abdominal symptoms are diagnostically challenging to general practitioners (GPs): although common, they may indicate cancer. In a prospective cohort of patients, we examined abdominal symptom frequency, initial diagnostic suspicion, and actions of GPs in response to abdominal symptoms. Methods Over a 10-day period, 493 GPs in Norway, Denmark, Sweden, Belgium, the Netherlands, and Scotland, recorded consecutive consultations: sex, date of birth and any specified abdominal symptoms. For patients with abdominal symptoms, additional data on non-specific symptoms, GPs’ diagnostic suspicion, and features of the consultation were noted. Data on all cancer diagnoses among all included patients were requested from the GPs eight months later. Findings Consultations with 61802 patients were recorded. Abdominal symptoms were recorded in 6264 (10.1%) patients. A subsequent malignancy was reported in 511 patients (0.8%): 441 (86.3%) had a new cancer, 70 (13.7%) a recurrent cancer. Abdominal symptoms were noted in 129 (25.2%) of cancer patients (P < 0.001), rising to 34.5% for the 89 patients with cancer located in the abdominal region. PPV for any cancer given any abdominal symptom was 2.1%. In symptomatic patients diagnosed with cancer, GPs noted a suspicion of cancer for 85 (65.9%) versus 1895 (30.9%) when there was no subsequent cancer (P < 0.001). No suspicion was noted in 32 (24.8%) cancer patients. The GP's intuitive cancer suspicion was independently associated with a subsequent new cancer diagnosis (OR 2.11, 95% CI 1.15–3.89). Laboratory tests were ordered for 45.4% of symptomatic patients, imaging for 10.4%, referral or hospitalization for 20.0%: all were more frequent in subsequent cancer patients (P < 0.001). Interpretation Abdominal symptoms pointed to abdominal cancers rather than to other cancers. However, the finding of abdominal symptoms in only one third of patients with an abdominal cancer, and the lack of cancer suspicion in a quarter of symptomatic cancer patients, provide challenges for GPs’ diagnostic thinking and referral practices. © 2017 The Authors
45.	Munthe, Christian, 1962 (författare) The magic word? Ethical experience of prioritizing cancer-related health action in a Swedish context 2018 Ingår i: What is so Special about Cancer? Perspectives from Clinical Research, Philosophy and Social Sciences, University of Cambridge, April 5-6, 2018. Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract Across health systems and the history of modern welfare societies, the experience of cancer as a privileged diagnostic category in the prioritizing of resources for different health actions is commonplace, although there are notable exceptions to be found in low resource settings. While this situation can often be criticised from an ethical standpoint, health resource allocation also has a political pragmatic side that may, if not justify, so at least partly excuse the way in which measures related to cancer are being given privileged access to healthcare and public health resources. This since democratically elected political representatives cannot completely ignore the iconic status of cancer in the public mind. I describe some of this dynamic based on the Swedish experience of introducing screening and testing programs, as well as new drugs for cancer treatment. While Sweden is certainly not immune to the privileged standing of cancer in health resource allocation, there is a development in public and popular attitude towards a more egalitarian conception of cancer disease compared to other diseases. Parts that explain this development have to do with a new and more systematic focus on assessing the effectiveness of and evidence for suggested health actions according to generic models, such as HTA, standardised rules how priority setting arguments must be shaped in order to have political validity, and a broader awareness of the phenomenon of opportunity cost in policy making generally. In addition, political agendas increasingly focused on cost cutting in public expenditure in spite of ever greater levels of societal wealth has certainly also contributed, albeit that mechanism may probably also be properly criticised from an ethical standpoint.
46.	Berg, Malin, 1976, et al. (författare) A national study of health-related quality of life in patients with cancer of the base of the tongue compared to the general population and to patients with tonsillar carcinoma 2021 Ingår i: Head and Neck-Journal for the Sciences and Specialties of the Head and Neck. - : Wiley. - 1043-3074 .- 1097-0347. ; 43:12, s. 3843-3856 Tidskriftsartikel (refereegranskat)abstract Background This exploratory, registry-based, cross-sectional study aimed to evaluate patients' health-related quality of life (HRQOL) in a subsite of oropharyngeal cancer: cancer of the base of the tongue (CBT). Methods CBT patients, treated with curative intent, completed the EORTC QLQ-C30 and QLQ-H&N35 questionnaires 15 months after diagnosis. The HRQOL of CBT patients was compared to reference scores from the general population and to that of tonsillar carcinoma patients. Results The 190 CBT patients scored significantly worse than members of the general population on most scales. CBT patients with human papilloma virus (HPV)-positive tumors had significantly better HRQOL on 8 of 28 scales than HPV-negative patients. Compared to 405 tonsillar carcinoma patients, CBT patients had significantly worse HRQOL on 8 of the 28 scales, the majority local head and neck related problems. Conclusion One year after treatment, CBT patients' HRQOL was significantly worse in many areas compared to that of the general population and slightly worse than that of tonsillar carcinoma patients.
47.	Johnson, Heather, et al. (författare) Development and validation of a 25-Gene Panel urine test for prostate cancer diagnosis and potential treatment follow-up 2020 Ingår i: BMC Medicine. - : BioMed Central. - 1741-7015. ; 18 Tidskriftsartikel (refereegranskat)abstract Background: Heterogeneity of prostate cancer (PCa) contributes to inaccurate cancer screening and diagnosis, unnecessary biopsies, and overtreatment. We intended to develop non-invasive urine tests for accurate PCa diagnosis to avoid unnecessary biopsies. Methods: Using a machine learning program, we identified a 25-Gene Panel classifier for distinguishing PCa and benign prostate. A non-invasive test using pre-biopsy urine samples collected without digital rectal examination (DRE) was used to measure gene expression of the panel using cDNA preamplification followed by real-time qRTPCR. The 25-Gene Panel urine test was validated in independent multi-center retrospective and prospective studies. The diagnostic performance of the test was assessed against the pathological diagnosis from biopsy by discriminant analysis. Uni- and multivariate logistic regression analysis was performed to assess its diagnostic improvement over PSA and risk factors. In addition, the 25-Gene Panel urine test was used to identify clinically significant PCa. Furthermore, the 25-Gene Panel urine test was assessed in a subset of patients to examine if cancer was detected after prostatectomy. Results: The 25-Gene Panel urine test accurately detected cancer and benign prostate with AUC of 0.946 (95% CI 0.963–0.929) in the retrospective cohort (n = 614), AUC of 0.901 (0.929–0.873) in the prospective cohort (n = 396), and AUC of 0.936 (0.956–0.916) in the large combination cohort (n = 1010). It greatly improved diagnostic accuracy over PSA and risk factors (p < 0.0001). When it was combined with PSA, the AUC increased to 0.961 (0.980–0.942). Importantly, the 25-Gene Panel urine test was able to accurately identify clinically significant and insignificant PCa with AUC of 0.928 (95% CI 0.947–0.909) in the combination cohort (n = 727). In addition, it was able to show the absence of cancer after prostatectomy with high accuracy. Conclusions: The 25-Gene Panel urine test is the first highly accurate and non-invasive liquid biopsy method without DRE for PCa diagnosis. In clinical practice, it may be used for identifying patients in need of biopsy for cancer diagnosis and patients with clinically significant cancer for immediate treatment, and potentially assisting cancer treatment follow-up.
48.	Molassiotis, Alexander, et al. (författare) Complementary and alternative medicine use in patients with haematological malignancies in Europe 2005 Ingår i: Complementary Therapies in Clinical Practice. - : Elsevier. - 1744-3881 .- 1873-6947. ; 11:2, s. 105-110 Tidskriftsartikel (refereegranskat)abstract This study reports upon a descriptive cross-sectional survey assessing the use of complementary and alternative medicine (CAM) in patients with haematological cancers. Twelve European countries contributed data from patients with haematological cancers, as part of a larger study. Sixty-eight patients with haematological cancer participated. Among the participants, 26.5% used some form of CAM after the cancer diagnosis. The most common therapies used were homeopathy (38.9%), herbal medicine (22.2%) various psychic therapies, such as use of mediums, healers, rebirthing or past life regression therapy (22.2%). A particular profile of a CAM user was not evident in the sample. Moderate levels of satisfaction with CAM were reported. Patients commonly used CAM to increase the ability of their body to fight cancer and to improve physical and emotional well-being. Information about CAM was received mainly from friends or family. As CAM use in patients with haematological malignancies is common, clinicians should assist patients who want to use CAM to make an appropriate decision, and improve communication with them about CAM use in an open and non-judgemental dialogue. © 2005 Elsevier Ltd. All rights reserved.
49.	Duell, Eric J, et al. (författare) Vitamin C transporter gene (SLC23A1 and SLC23A2) polymorphisms, plasma vitamin C levels, and gastric cancer risk in the EPIC cohort 2013 Ingår i: Genes & Nutrition. - : Springer Berlin/Heidelberg. - 1555-8932 .- 1865-3499. ; 8:6, s. 549-560 Tidskriftsartikel (refereegranskat)abstract Vitamin C is known to protect mucosal tissues from oxidative stress and inhibit nitrosamine formation in the stomach. High consumption of fruits, particularly citrus, and higher circulating vitamin C concentrations may be inversely associated with gastric cancer (GC) risk. We investigated 20 polymorphisms in vitamin C transporter genes SCL23A1 and SCL23A2 and GC risk in 365 cases and 1,284 controls nested within the European Prospective Investigation into Cancer and Nutrition cohort. We also evaluated the association between these polymorphisms and baseline plasma vitamin C levels in a subset of participants. Four SNPs were predictors of plasma vitamin C levels (SLC23A1 rs11950646 and rs33972313; SLC23A2 rs6053005 and rs6133175) in multivariable linear regression models. One SNP (SLC23A2 rs6116569) was associated with GC risk, in particular non-cardia GC (OR = 1.63, 95 % CI = 1.11-2.39, based on 178 non-cardia cases), but this association was attenuated when plasma vitamin C was included in the logistic regression model. Haplotype analysis of SLC23A1 yielded no associations with GC. In SLC23A2, one haplotype was associated with both overall and non-cardia GC, another haplotype was associated with GC overall, and a third was associated with intestinal-type GC. Common variants in SLC23A1 and SLC23A2 may influence plasma vitamin C concentration independent of dietary intake, and variation in SLC23A2 may influence GC risk. Additional prospective studies in large populations and consortia are recommended. Investigation of variation in vitamin C transporter genes may shed light on the preventative properties of vitamin C in gastric carcinogenesis.
50.	Strandberg, E., et al. (författare) Effects of heavy-load resistance training during (neo-)adjuvant chemotherapy on muscle cellular outcomes in women with breast cancer 2021 Ingår i: Medicine. - : Ovid Technologies (Wolters Kluwer Health). - 0025-7974 .- 1536-5964. ; 100:10 Tidskriftsartikel (refereegranskat)abstract Introduction: (Neo-)adjuvant chemotherapy for breast cancer has a deleterious impact on muscle tissue resulting in reduced cardiorespiratory fitness, skeletal muscle mass and function. Physical exercise during treatment may counteract some of these negative effects. However, the effects of resistance training (RT) alone have never been explored. The present study aims to investigate if heavy-load RT during (neo-)adjuvant chemotherapy counteracts deleterious effects on skeletal muscle in women diagnosed with breast cancer. We hypothesize that (neo-)adjuvant treatment with chemotherapy will reduce muscle fiber size, impair mitochondrial function, and increase indicators of cellular stress and that RT during treatment will counteract these negative effects. We also hypothesize that RT during (neo-)adjuvant chemotherapy will increase muscle and blood levels of potential antitumor myokines and reduce treatment-related side effects on muscle strength and cardiorespiratory fitness. Methods: Fifty women recently diagnosed with breast cancer scheduled to start (neo-)adjuvant chemotherapy will be randomized to either randomized to either intervention group or to control group. The intervention group will perform supervised heavy-load RT twice a week over the course of chemotherapy (approximately 16-weeks) whereas the control group will be encouraged to continue with their usual activities. Muscle biopsies from m. vastus lateralis will be collected before the first cycle of chemotherapy (T0), after chemotherapy (T1), and 6 months later (T2) for assessment of muscle cellular outcomes. The primary outcome for this study is muscle fiber size. Secondary outcomes are: regulators of muscle fiber size and function, indicators of cellular stress and mitochondrial function, myokines with potential antitumor effects, muscle strength, and cardiorespiratory fitness. Ethics and dissemination: Ethical approval has been obtained from the Regional Ethical Review Board in Uppsala, Sweden (Dnr:2016/230/2). Results will be disseminated through presentations at scientific meetings, publications in peer-reviewed journals, social media, and patient organizations.

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