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1.	Ahlberg, Alexander, et al. (författare) Early self-care rehabilitation of head and neck cancer patients 2011 Ingår i: Acta Oto-Laryngologica. - : Informa UK Limited. - 0001-6489 .- 1651-2251. ; 131:5, s. 552-61 Tidskriftsartikel (refereegranskat)abstract CONCLUSIONS: No positive effects of early preventive rehabilitation could be identified. The results do not contradict the proposition that rehabilitation based on self-care can be effective but it is important to establish evidence-based training programs and identify proper instruments for selection of patients and evaluation of intervention. OBJECTIVES: Patients with head and neck cancer suffer from functional impairments due to intense treatment. In this study, we investigated the effectiveness of an experimental early preventive rehabilitation using hard, objective end points in a nonselective, longitudinal, prospective cohort study. METHODS: In all, 190 patients were included in the program and received instructions for training before the start of treatment with the aim of reducing swallowing problems and reducing mouth opening and stiffness in the neck. A control group of 184 patients was recruited. RESULTS: There was no difference in weight loss and 2-year survival between the two groups. No positive effects concerning functional impairments were found in patient-reported outcome measures.
2.	Ahlberg, Alexander, et al. (författare) Morbidity of supraomohyoidal and modified radical neck dissection combined with radiotherapy for head and neck cancer : a prospective longitudinal study 2012 Ingår i: Head and Neck. - : Wiley. - 1043-3074 .- 1097-0347. ; 34:1, s. 66-72 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: The purpose of this study was to show the investigated impact of supraomohyoidal neck dissection and modified radical neck dissection, both combined with radiotherapy, on cervical range of motion (CROM), mouth opening, swallowing, lymphedema, and shoulder function.METHODS: One hundred eight patients who had neck dissections and 98 patients who had non-neck dissections were evaluated in a prospective, nonselective, longitudinal cohort study by a physiotherapist and a speech-language pathologist (SLP) before the start of radiotherapy and up to 12 months after treatment.RESULTS: The incidence of shoulder disability after neck dissection was 18%. Supraomohyoidal neck dissection had no significant effect on the evaluated parameters at any time point. Modified radical neck dissection significantly reduced CROM and mouth opening 2 months after treatment, but after 12 months only cervical rotation was still significantly reduced.CONCLUSION: In patients treated with external beam radiation (EBRT), modified radical neck dissection induced additional morbidity regarding CROM but not regarding mouth opening, swallowing, and lymphedema 1 year after treatment. Both modified radical neck dissection and supraomohyoidal neck dissection induced shoulder disability.
3.	Alenius, Lisa Smeds, et al. (författare) Between a rock and a hard place : Registered nurses' accounts of their work situation in cancer care in Swedish acute care hospitals 2020 Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 47 Tidskriftsartikel (refereegranskat)abstract Purpose: Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals.Methods: This study is based on a qualitative framework analysis of data derived from an open-ended question by 200 RNs working in specialized or general cancer care hospital units, who responded to the Swedish RN4CAST survey on nurse work environment. Antonovsky's salutogenic concepts "meaningfulness", "comprehensibility", and "manageability" were applied post-analysis to support interpretation of results.Results: RNs describe a tension between expectations to uphold safe, high quality care, and working in an environment where they are unable to influence conditions for care delivery. A lacking sense of agency, on individual and collective levels, points to organizational factors impeding RNs' use of their competence in clinical decision-making and in governing practice within their professional scope.Conclusions: RNs in this study appear to experience work situations which, while often described as meaningful, generally appear neither comprehensible nor manageable. The lack of an individual and collective sense of agency found here could potentially erode RNs' sense of meaningfulness and readiness to invest in their work.
4.	Campbell, Pauline, et al. (författare) Recognizing European cancer nursing: Protocol for a systematic review and meta€-analysis of the evidence of effectiveness and value of cancer nursing 2017 Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 73, s. 3144-3153 Tidskriftsartikel (refereegranskat)abstract Aim: To identify, appraise and synthesize the available evidence relating to the value and impact of cancer nursing on patient experience and outcomes.Background: There is a growing body of literature that recognizes the importance and contribution of cancer nurses, however, a comprehensive review examining how cancer nurses have an impact on care quality, patient outcomes and overall experience of cancer, as well as cost of services across the entire cancer spectrum is lacking.Design: A systematic review and meta-analysis using Cochrane methods.Methods: We will systematically search 10 electronic databases from 2000, with pre-determined search terms. No language restrictions will be applied. We will include all randomized and controlled before-and-after studies that compare cancer nursing interventions to a standard care or no intervention. Two reviewers will independently assess the eligibility of the studies and appraise methodological quality using the Cochrane Risk of Bias tool. Disagreements will be resolved by discussion and may involve a third reviewer if necessary. Data from included studies will be extracted in accordance with the Template for intervention Description and Replication reporting guidelines. Missing data will be actively sought from all trialists. Data will be synthesized in evidence tables and narrative to answer three key questions. If sufficient data are available, we will perform meta-analyses.Discussion: This review will allow us to systematically assess the impact of cancer nursing on patient care and experience. This evidence will be used to determine implications for clinical practice and used to inform future programme and policy decisions in Europe.
5.	Charalambous, Andreas, et al. (författare) A scoping review of trials of interventions led or delivered by cancer nurses 2018 Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 86, s. 36-43 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Advances in research and technology coupled with an increased cancer incidence and prevalence have resulted in significant expansion of cancer nurse role, in order to meet the growing demands and expectations of people affected by cancer (PABC). Cancer nurses are also tasked with delivering an increasing number of complex interventions as a result of ongoing clinical trials in cancer research. However much of this innovation is undocumented, and we have little insight about the nature of novel interventions currently being designed or delivered by cancer nurses.OBJECTIVES: To identify and synthesise the available evidence from clinical trials on interventions delivered or facilitated by cancer nurses.DATA SOURCES AND REVIEW METHODS: A systematic review of randomised controlled trials (RCT), quasi-RCTs and controlled before and after studies (CBA) of cancer nursing interventions aimed at improving the experience and outcomes of PABC. Ten electronic databases (CENTRAL, MEDLINE, AMED, CINAHL, EMBASE, Epistemonikos, CDSR, DARE, HTA, WHO ICTRP) were searched between 01 January 2000 and 31 May 2016. No language restrictions were applied. Bibliographies of selected studies and relevant Cochrane reviews were also hand-searched. Interventions delivered by cancer nurses were classified according to the OMAHA System. Heat maps were used to highlight the volume of evidence available for different cancer groups, intervention types and stage of cancer care continuum.RESULTS: The search identified 22,450 records; we screened 16,169 abstracts and considered 925 full papers, of which 214 studies (247,550 participants) were included in the evidence synthesis. The majority of studies were conducted in Europe (n = 79) and USA (n = 74). Interventions were delivered across the cancer continuum from prevention and risk reduction to survivorship, with the majority of interventions delivered during the treatment phase (n = 137). Most studies (131/214) had a teaching, guidance or counselling component. Cancer nurse interventions were targeted at primarily breast, prostate or multiple cancers. No studies were conducted in brain, sarcoma or other rare cancer types. The majority of the studies (n = 153) were nurse-led and delivered by specialist cancer nurses (n = 74) or advanced cancer nurses (n = 29), although the quality of reporting was poor.CONCLUSIONS: To the best of our knowledge, this is the first review to synthesise evidence from intervention studies across the entire cancer spectrum. As such, this work provides new insights into the nature of the contribution that cancer nurses have made to evidence-based innovations, as well as highlighting areas in which cancer nursing trials can be developed in the future.
6.	Drury, Amanda, et al. (författare) The future of cancer nursing in Europe : Addressing professional issues in education, research, policy and practice 2023 Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 63 Forskningsöversikt (refereegranskat)abstract Cancer nursing has evolved to meet the demands of rising cancer incidence, newer and more complex treatment options, and the emergence of specialist roles supporting patients from pre-diagnosis, through treatment, survivorship and end of life care. Nurses are involved in direct and in-direct care of people at risk of, and living with and after cancer in diverse contexts. As a result, nurses are positioned to have a significant influence on the processes and outcomes of cancer care, through education, research, policy, practice and leadership. However, nursing and cancer care face challenges, arising from workforce shortages, under-investment in services and under-representation in decision-making. This paper discusses the evolution of cancer nursing across education, policy, research, profession and practice, and sets an agenda for innovation and disruption across these domains to ensure sustainability of cancer care services and care for people living with and after cancer. We argue for the continued advancement of cancer nursing with critical focus on identifying and addressing inequities in role recognition and access to specialist cancer nursing education throughout Europe. Partnership, exchange of learning, and co-design will be central to progressing education, evidence and policy to support future growth in the cancer nursing workforce and embed cancer nurses in research and policy setting at local, national and international levels.
7.	Ehrsson, Ylva Tiblom, et al. (författare) Explorative study on the predictive value of systematic inflammatory and metabolic markers on weight loss in head and neck cancer patients undergoing radiotherapy 2010 Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 18:11, s. 1385-1391 Tidskriftsartikel (refereegranskat)abstract Purpose This study aimed to explore the predictive value of systematic inflammatory and metabolic markers in head and neck (H&N) cancer patients during radiotherapy (RT). Methods Twenty-seven patients were evaluated. The protocol included serial blood tests [highly sensitive C-reactive protein (hsCRP), albumin, insulin-like growth factor 1 (IGF-1), IGF binding protein 1 (IGFBP-1) and ghrelin], measurements of body weight and assessment of oral mucositis. Results The mean nadir of weight loss was observed at the end of RT. At the time of diagnosis, mean hsCRP was 5.2 +/- 1.0 mg/L. HsCRP significantly increased during RT and decreased during the post-RT period. Mean maximum hsCRP was 35.8 +/- 8.5 mg/L, with seven patients reaching >40 mg/L. A numerical decrease of albumin (by 18.2%) and only small changes in IGF-1, IGFBP-1 and ghrelin levels were observed. None of the metabolic parameters was significantly associated with weight loss. Conclusions HsCRP increased in response to RT for H&N cancer as a sign of irradiation-induced inflammation. Weight loss was not preceded by changes of the metabolic parameters, indicating that assessment of the blood markers used in this study is of little value. Regular body weight measurement and assessment of oral mucositis are feasible, cheap and important procedures to control the metabolic homeostasis during RT.
8.	Henriksson, Roger, et al. (författare) Överlevnaden ökar vid all cancer – men ojämlikheten kvarstår - Konceptet »rätt resurser med rätt åtgärd till rätt patient vid rätt tillfälle« måste få genomslag : [Survival increases for all cancer diagnoses – but inequality persists] 2018 Ingår i: Läkartidningen. - : Sveriges läkarförbund. - 0023-7205 .- 1652-7518. ; 115:19-20 Tidskriftsartikel (refereegranskat)abstract New data show a continuously increased five-year survival for almost all analyzed cancer diagnoses since 1990. It has to be emphasized that the figures are uncertain due to the limited number of patients. The variation is huge and the greatest improvements are seen not least among the three major tumor diseases (breast, colorectal and prostate cancer), where the society, industry and research bodies made the biggest investments over the years. The causes of improved survival can be sought in several areas, such as earlier detection and better treatments. In addition to survival estimates, it is also always of importance to consider aspects around patient related outcome, such as quality of life.
9.	Karlsson Rosenblad, Andreas, Fil. dr, docent, 1973-, et al. (författare) Sämre livskvalitet bland kvinnor med gynekologisk cancer födda utomlands 2024 Ingår i: Läkartidningen. - 0023-7205 .- 1652-7518. ; :1-4 Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
10.	Kelly, Daniel, et al. (författare) The effectiveness of nurse-led interventions for cancer symptom management 2000–2018: A systematic review and meta-analysis 2022 Ingår i: Health Sciences Review. - : Elsevier. - 2772-6320. ; 4 Forskningsöversikt (refereegranskat)
11.	Kullberg, Anna, et al. (författare) ‘Why is there another person's name on my infusion bag?’ Patient safety in chemotherapy care : A review of the literature 2013 Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 17:2, s. 228-235 Forskningsöversikt (refereegranskat)abstract PurposeApproximately 10% of all patients is in some way harmed by the health care system. Risk factors have been identified and patients with cancer are at high risk due to the seriousness of the disease, co-morbidity, often old age, high risk treatments such as chemo and radiotherapy. Therefore, a closer look on safety for patients undergoing chemotherapy is needed. The aim of this study was to identify and evaluate interventions for improved patientsafety in chemotherapy care.MethodWe undertook a review of the available evidence regarding interventions to improve patientsafety in relation to chemotherapy care.ResultsWe found 12 studies describing the following interventions; 1) Computerized Prescription Order Entry (CPOE), 2) Failure Mode and Effect Analysis (FMEA) and Lean Sigma, 3) Error reporting and surveillance systems, 4) Administration Checklist and 5) Education for nurses. Even if all five interventions showed positive effects in patientsafety, the evidence level is rather weak due to design, sample size and the difficulties involved measuring patient safety issues.ConclusionsThree studies with fairly high evidence level showed that computerized chemotherapy prescriptions were significantly safer than manual prescriptions and could therefore be recommended. For the other remaining interventions, more research is needed to assess the effect on improved patient safety in chemotherapy care. There is a need for more rigorous studies with sophisticated design for generating evidence in the field.
12.	Mullaney, Tara, 1980-, et al. (författare) The influence of a department's psychosocial climate and treatment environment on cancer patients' anxiety during radiotherapy 2016 Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 20, s. 113-118 Tidskriftsartikel (refereegranskat)abstract PURPOSE: The objective of this study is to determine whether there is a relationship between cancer patients' perceptions of the person-centeredness of their treatment experience and their anxiety levels during treatment.METHOD: A questionnaire was distributed to adult cancer patients going through external beam radiotherapy (RT) with curative intent at a university hospital in Sweden (n = 892), which included two surveys, the State Trait Anxiety Inventory-state specific questions (STAI-S), and the Patient-centered Climate Questionnaire (PCQ) and additional treatment-specific questions. Eligible patients were provided with the questionnaire on their seventh day of RT by an RT-nurse.RESULTS: Statistical analysis showed a significant negative relationship between STAI-S scores and PCQ scores, and a significant positive relationship between the Treatment Environment questions and the STAI-S scores. Multivariate regression modeling found the PCQ subscale of safety to have the strongest negative association with STAI-S scores, showing that a climate of safety can significantly decrease patient situational anxiety levels. On the other hand, difficulty tolerating the overall treatment experience, worry about the treatment equipment, or feelings of isolation or claustrophobia within the treatment room all significantly factor into increases in patient-reported situational anxiety levels.CONCLUSION: Both the treatment environment and the psychosocial climate of the RT clinic significantly impact cancer patient state anxiety levels. These findings suggest that actively employing a person-centered approach during RT, and designing the treatment environment to be more attentive to the patient experience can both play a significant role in decreasing patient situational anxiety during treatment.
13.	Olausson, Kristina, 1972- (författare) Patient experiences of the radiotherapy process and treatment 2016 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract BackgroundMost cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory. RT is often associated with unfamiliar procedures where the technical environment, side effects and interaction with staff seem to play a major role in the patient’s treatment experience. These experiences could sometimes lead to disruption of the treatment which may have negative consequences for the outcome. The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.AimThe overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.MethodsTo gain further knowledge and understanding about patients experience of RT both quantitative (I, II, III) and qualitative (III, IV) methodology were used. The data in the thesis focused on patients undergoing external RT at different RT units in Sweden. Study I and II, focused on two regions, the northern region of Sweden and the region of Stockholm and Gotland. Study III and IV were performed at eight different RT units in Sweden.ResultsIn Study I, two types of topical agents (Calendula Weleda cream vs. Essex cream) were compared regarding reducing the risk of severe acute radiation skin reactions (ARSR). No difference in severe ARSR was found between the groups and the patients reported low levels of ARSR. In Study II, the influence of an RT unit’s psychosocial climate and treatment environment on cancer patients’ anxiety during external RT was evaluated. Data was collected (questionnaire) from 892 patients. The results showed that both the treatment environment and the psychosocial climate of the RT unit significantly impacted cancer patient anxiety levels. In Study III & IV, a questionnaire to measure the patient´s experience during external RT was developed and tested. The results showed that the RT Experience Questionnaire (RTEQ), with 23 items, was a tentatively valid and reliable instrument to measure how patients experience the RT process and the environment in the treatment room. In Study IV, written comments from the open-ended question “Is there anything else you want us to know?” in the preliminary RTEQ was analysed with qualitative content analysis. This data was abstracted into the following four major categories reflecting the experience of the RT process: Experiences in the high tech RT environment; Understanding the RT procedures and side effects; Dealing with daily life during RT and The nurses’ role and performance.ConclusionThe RT environment and the RT related processes seem to impact cancer patients, both physically and psychologically. A person-centered care approach, as well as attention to the design, both of the treatment process and the physical environment could significantly improve the patient experience and patient involvement. The results also highlight the importance of taking patient experiences into account when introducing new RT methods and techniques.
14.	Olausson, Kristina, 1972-, et al. (författare) What matters to you? : Free-text comments in a questionnaire from patients undergoing radiotherapy 2020 Ingår i: Technical Innovations & Patient Support in Radiation Oncology. - : Elsevier. - 2405-6324. ; 13, s. 11-16 Tidskriftsartikel (refereegranskat)abstract Background: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment.Methods: The data consisted of free-text comments from one open-ended question: "Is there anything else you want us to know" and were analysed using qualitative content analysis.Results: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The hand-written, free-text comments reflected the patients' experience of the RT process and were abstracted into the four major categories with sub-categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses' role and performance. The categories reflect the patients' experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients' daily lives.Conclusion: The main conclusions from this study are that the involvement of patients in choosing daily appointment times, providing good information during the RT process to make the patients feel safe, experience and attitude of the staff and respect for the patient's autonomy are highly ranked values for patients. An implementation of person-centred care may help relieve many of these problems.
15.	Olausson, Kristina, 1972-, et al. (författare) What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy Annan publikation (övrigt vetenskapligt/konstnärligt)abstract Background: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment. Methods: The data consisted of free-text comments from one open-ended question: “Is there anything else you want us to know” and were analysed using qualitative content analysis. Results: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The analysis of the data resulted in four major categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses’ role and performance. Conclusion: The categories reflect the patients’ experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients’ daily lives.
16.	Olausson, Kristina, 1972-, et al. (författare) What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy Annan publikation (övrigt vetenskapligt/konstnärligt)abstract Background: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment. Methods: The data consisted of free-text comments from one open-ended question: “Is there anything else you want us to know” and were analysed using qualitative content analysis. Results: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The analysis of the data resulted in four major categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses’ role and performance. Conclusion: The categories reflect the patients’ experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients’ daily lives.
17.	Oliva, Delmy, 1967-, et al. (författare) Individual genetic variation might predict acute skin reactions in women undergoing adjuvant breast cancer radiotherapy 2018 Ingår i: Anticancer Research. - : International Institute of Anticancer Research. - 0250-7005 .- 1791-7530. ; 38:12, s. 6763-6770 Tidskriftsartikel (refereegranskat)abstract Adverse skin reactions during radiotherapy (RT) are common. The aim of this study was to explore whether genetic variation might be linked to acute radiation skin reactions (ARSR). Materials and Methods: One hundred and nineteen women undergoing adjuvant RT for breast cancer were included. The symptoms of itching, burning and irritation were self-reported twice using the visual analogue scale. Assessments used the Radiation Therapy Oncology Group scoring system for acute RT skin reaction (RTOG scale). Blood-based single nucleotide polymorphism (SNP) analysis was performed. Thirty SNPs of well-defined functional genes were investigated. Results: All women were assessed with ARSR. After RT, the women self-reported itching (n=97), burning (n=64) and irritation (n=96). Two SNPs in X-Ray Repair Cross Complementing 2 gene (XRCC2) rs2040639 and interferon gamma (IFNG) rs2069705 genes were found to be associated with ARSR. Conclusion: An association between two SNPs and ARSR was found. The possibility of using these SNPs as prognostic biomarkers for ARSR as tools to improve the care of patients needs further investigation.
18.	Oliva, Delmy, 1967- (författare) Prediction of side effects from anticancer treatment with the purpose of increasing quality of life 2019 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Cancer and its treatments can cause a variety of symptoms. Some of these symptoms are related to the disease and others are seen as a consequence of the treatment. Since patients experience side effects to different degrees despite undergoing the same treatment, it is hypothesized that there is a genetic factor. The individual variation that exists between different patients regarding nausea triggered by chemotherapy, radiotherapy induced skin reactions as well as sleep disorders associated with cancer could partly be explained by genetic differences. We have in these studies confirmed these individual differences. Previous nursing research has mainly focused on the symptoms themselves. The focus in this thesis are the following three main symptoms; nausea and vomiting related to chemotherapy, acute skin inflammation following radiotherapy and sleep problems associated with cancer diagnosis and -treatment.The aim of this thesis was to find biological markers that can identify the risk of and/or protective factors for nausea and/or vomiting (CINV) as well as understand its heterogeneity (Study 1 and 2). It also aimed to understand the individual factors behind acute radiation skin reactions (ARSR) (Study 3) and sleeping disturbances in patients treated for cancer (Study 4), permitting a more individualized care and optimized health-related quality of life (HRQoL).In Study 1 and 2 the patients themselves had to document in a diary their experience of nausea and vomiting and well-being. Well-being was considered as synonymous with quality of life. We found a variability and heterogeneity of those symptoms (Study 1). Three genetic markers, FAS/CD95, RB1/LPAR6 and CCL2 that could explain the individual differences and assess the risk of chemotherapy-induced nausea were found in Study 2.Acute radiation skin reactions (ARSR) along with itching and burning sensation associated with radiotherapy (RT) was assessed by the patients themselves (Study 3) with help of the VAS- and RTOG scales, scoring for visible redness. We found two possible genetic markers, XRCC2 and IFNG. Also, individual differences in symptoms behavior were found.Sleep disturbances were common and were reported with obvious individual differences [1]. For data collection were used a sleep questionnaire, the Medical Outcomes Study Sleep Scale (MOS), open ended questions and EORTC QLQ- C30 questionnaire of quality of life. Sleep, which is important for all primary body functions, is often affected in connection with cancer diagnosis and -treatment.Through collaboration between nursing staff and specialists in basic science, we have found that biological markers can help in creating individualized care. Knowledge of individual variations in the severity of chemo- or radiotherapy-induced side effects is important in order to better personalize the treatment and care, improve the treatment results and alleviate or prevent the side effects of oncological treatments. By linking symptoms to biological markers, it will hopefully be able to increase the patients’ total health-related quality of life, this being the main goal of this thesis.
19.	Oliva, Delmy, et al. (författare) Single nucleotide polymorphism directed antiemetic treatment in women with breast cancer treated with neo- or adjuvant chemotherapy : a randomised multicentre phase II study. (EudraCT: 2015–000658-39) 2023 Ingår i: Anticancer Research. - : International Institute of Anticancer Research. - 0250-7005 .- 1791-7530. ; 43:6, s. 2671-2681 Tidskriftsartikel (refereegranskat)abstract Background/aim: The role of single nucleotide polymorphisms (SNPs) in the frequency and intensity of chemotherapy-induced nausea and vomiting (CINV) in women with breast cancer (BC) is unclear. The primary purpose of this study was to compare/evaluate the effect of SNP-guided antiemetic treatment versus standard CINV treatment.Patients and methods: A randomised, factorial, phase II multicentre study design was used. Women planned for neoadjuvant or adjuvant chemotherapy with epirubicin, cyclophosphamide and fluorouracil (FEC /EC, with or without fluorouracil) for BC were randomised to SNP-guided antiemetic treatment (based on the results of SNP analyses) versus standard CINV treatment. Blood samples were taken before the treatment was initiated. Patient-reported data on CINV (during 10 days from onset of cancer treatment) and health-related quality of life (HRQoL), were collected before and after the first cancer treatment.Results: A total of 188 women were included. Overall, nausea was reported by 86% (n=129) of the patients during the ten-day period from the start of cancer treatment. The SNP genotype studied varied. In FAS-CD95, the genotypes AG and GG were overrepresented; in RB1-LPAR6, GG was overrepresented, and in CCL2, both AA and GG were overrepresented. We found no statistically significant difference in CINV between SNP-guided antiemetic treatment versus standard CINV treatment.Conclusion: SNP-guided antiemetic treatment could be as effective as standard treatment. SNP-guided antiemetic treatment of CINV is possibly useful in detecting patients with a higher or lower risk for CINV and thus may help in avoiding over-treatment with toxic components. CINV negatively affects the HRQL.Keywords: Breast cancer; chemotherapy-induced nausea and vomiting; single nucleotide polymorphism.
20.	Oliva, Delmy, 1967-, et al. (författare) Single nucleotide polymorphisms might influence chemotherapy induced nausea in women with breast cancer 2017 Ingår i: Clinical and Translational Radiation Oncology. - : Elsevier. - 2405-6308. ; 2, s. 1-6 Tidskriftsartikel (refereegranskat)abstract Background Women receiving FEC (5 fluorouracil, epirubicin and cyclophosphamide) chemotherapy (CT) for breast cancer (BC) often experience side effects such as nausea and vomiting. Individual variations of side effects occur in patients despite similar cancer therapy. The purpose of this study was to investigate a possible genetic background as a predictor for individual variations in nausea induced by CT. Methods 114 women were included in the study. All women received adjuvant CT for BC. Self-reported nausea and vomiting was recorded in a structured diary over ten days following treatment. Blood samples were collected before the treatment and used for the detection of 48 single nucleotide polymorphisms (SNPs) in 43 genes. SNPs from each individual woman were analyzed for their relation to the patient-reported frequency and intensity of nausea and vomiting. Results Eighty-four percent (n=96) of the women reported acute or delayed nausea or combined nausea and vomiting during the ten days following CT. Three out of the forty-eight SNPs in the following genes: FAS/CD95, RB1/LPAR6 and CCL2 were found to be associated with a risk of nausea. Conclusion SNPs in the FAS/CD95, RB1/LPAR6 and CCL2 genes were found to be associated with nausea among women treated with adjuvant FEC for BC. SNPs analysis is fast and cost effective and can be done prior to any cancer therapy. The association between individual SNPs and severe side effects from FEC may contribute to a more personalized care of patients with BC.
21.	Rangelova, Elena B., et al. (författare) Centralization Improves Survival of Pancreatic Cancer by Increased Operative Indication and Resection Rate : A Population-Based Study 2020 Ingår i: Journal of the American College of Surgeons. - : Elsevier. - 1072-7515 .- 1879-1190. ; 231:4, s. E53-E53 Tidskriftsartikel (refereegranskat)
22.	Rosenblad, Andreas, Fil. dr, docent, 1973-, et al. (författare) Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden : a five-year cross-sectional study 2024 Ingår i: Quality of Life Research. - : Springer Nature. - 0962-9343 .- 1573-2649. ; 33, s. 667-678 Tidskriftsartikel (refereegranskat)abstract Purpose: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.Methods: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal–Wallis test and linear regression.Results: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.Conclusion: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.
23.	Scott Duncan, Therese, et al. (författare) Empowered patients and informal care-givers as partners? : A survey study of healthcare professionals' perceptions 2023 Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 23:1 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals' attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. METHODS: A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. RESULTS: Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients' engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved. CONCLUSION: Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.
24.	Scott Duncan, Therese, et al. (författare) From Information Seekers to Innovators : Qualitative Analysis Describing Experiences of the Second Generation of E-Patients 2019 Ingår i: Journal of Medical Internet Research. - Stockholm : JMIR Publications Inc.. - 1438-8871. ; 21:8 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative.OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care.METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset.RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them.CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.
25.	Sharp, Lena, et al. (författare) Access to supportive care during and after cancer treatment and the impact of socioeconomic factors 2018 Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 57:10, s. 1303-1310 Tidskriftsartikel (refereegranskat)abstract Background: Sweden's national cancer strategy points out several areas of cancer care that need improvements. Among them the need for supportive care resources to be accessible through the entire cancer trajectory and the reduction of socioeconomic inequalities. The aim of this study was to compare the patient-reported access to supportive care in the Stockholm-Gotland region between patients diagnosed in 2014 and 2016. The aim was also to describe how socioeconomic and other demographic factors impact access to supportive care.Material and methods: All patients with gynaecological, head and neck, haematological and upper gastrointestinal cancers diagnosed in the Stockholm-Gotland regions were identified through the Swedish Cancer Registries. Data were collected via a questionnaire on demographic, socioeconomic factors and patients' perception (n=1872) of access to supportive care. Data were summarized using descriptive statistics and logistic regression was used for relevant variables.Results: Access to some supportive care resources, such as contact nurses (CNs) and individual written care plans (IWCPs) had significantly improved from 2014 to 2016. The proportion of patients that had received information about patient advocacy groups (PAGs) had also improved but remained on a relatively low level (29 and 35%, respectively). The proportion of patients being refereed to palliative care (PC) did not change between 2014 and 2016. In total, 10% of the patients reported to having received information on second medical opinion (SMO). Patients that had undergone multimodality cancer treatment were more likely to report access to supportive care, and those with lower education levels were more likely to have access to CNs and IWCPs.Conclusion: Access to some of the supportive care resources have shown improvements in the Stockholm-Gotland region but further efforts are required, especially regarding access to PC, information about PAGs and SMOs.
26.	Sharp, Lena (författare) Aspects of nursing care for patients with head and neck cancer receiving radiation therapy 2006 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Head & Neck (H&N) cancer accounts for approximately 3 % of all cancer in Sweden. The treatment options include radiotherapy (RT), surgery and/or chemotherapy. Both the disease and the treatment cause side effects that often have great impact on the patients. Many H&N cancer patients have limited social networks and have been found to have a worse general health compared with the general population. A majority of these patients are smokers and many also have other types of substance abuse. The general aim of this thesis was to improve the nursing care for H&N cancer patients undergoing RT. The four studies included, predominantly focus on information and communication (paper I), immobilization and reproducibility during RT for H&N cancer (paper II) and smoking cessation (paper III and IV). In paper I, the helpfulness of a care diary, aiming to improve information and communication, was evaluated through anonymous questionnaires from H&N cancer patients, family members and clinicians. The results indicate that the overall impression of the care diaries were good or very good among 85 % (n = 99) of the responders. The evaluation gave information on the usefulness of the diaries, suggestions for improvements in layout and content and also indicated difficulties, such as lack of involvement and information among some clinicians. In paper II, two types of thermoplastic face masks (Posicast ®) for immobilization during RT were compared, regarding reproducibility of patient position over time, radiation skin reactions and the patients' subjective experiences of using the masks. In this trial, 260 patients were randomised to one of the two types of face mask. One hundred and forty one patients were evaluated. We found no difference in reproducibility, pain, fit, discomfort or possibility to move the head within the mask during RT between the two types of masks. However, patients using the longer head and shoulder mask (HSM) experienced significantly more claustrophobia (p = 0.023). Patients allocated to HSM and receiving > 60 Gy were also found to have more radiation skin reaction, according to the WHO scale for acute or sub acute toxicity. In paper III, H&N cancer patients and nurses experience of a nurse-led smoking cessation program was explored. In this qualitative study, data was collected from diary notes (kept by six patients and two nurses) concerning 13 H&N cancer patients, focusing on the smoking cessation process. Data was analysed using the Framework approach. The most important finding was the therapeutic value of the patient-nurse relationship, described by both patients and nurses. The results were presented in three major categories; patient-nurse relationship, factors facilitating and hindering behaviour change and drug (ab)use. In paper IV, the effectiveness (proportion of smoke-free patients) of the nurse-led smoking cessation program for 50 H&N cancer patients planned for curative RT was evaluated, with one-year follow-up. Thirtyseven (74 %) of the patients were tested (measuring carbon monoxide in expired air) smoke free weekly during RT, and of the 41 patients alive after one year 28 (68 %) were reported and tested smoke free at the one-year follow-up. Care diaries seem to be a useful tool in communication between H&N cancer patients, their families and clinicians. We recommended that the care diaries should be implemented in the standard care for H&N cancer patients after improvements but a more sophisticated evaluation on a larger sample in needed. When choosing an immobilization device for H&N cancer patients undergoing RT, a more individual approach is recommended and the shorter head mask (HM) is suggested as first choice, to reduce the risk severe skin toxicity, especially for patients receiving > 60 Gy and/or with previous experiences of claustrophobia. Smoking cessation could be implemented into standard cancer care and even H&N cancer patients with a heavy nicotine addiction and multi drug abuse could successfully quit smoking with systematic support from the multidisciplinary team. However, to more accurately evaluate the effect of this nurse-led intervention program, farther studies are on going, involving larger groups of patients and suitable control groups.
27.	Sharp, Lena, PhD, et al. (författare) Aspects of occupational safety : a survey among European cancer nurses 2024 Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 70 Tidskriftsartikel (refereegranskat)abstract Purpose: Nurses are particularly at risk for occupational exposure to hazardous cancer drugs, risking both acute and chronic health effects. Knowledge on the implemented safety precautions into minimizing these risks is limited.Methods: The European Cancer Nursing Index (ECNI) was developed by the European Oncology Nursing Society (EONS) to illustrate the development and status of this profession. In this study, anonymous online survey data on occupational safety reported by European cancer nurses as part of the ECNI 2022, was analysed.Results: A total of 630 cancer nurses from 29 countries responded to the survey. A majority reported that written guidelines (n = 553, 88%) on safe handling and administration of hazardous drugs, personal protection equipment (PPE) and cytotoxic spillage kits (n = 514, 82%) were available at their workplaces. 130 (21%) nurses reported that wipe testing to assess any residual hazardous drugs on workplace surfaces were conducted systematically at their workplaces. 185 (29%) nurses reported that nurses sometimes or always continued with their regular tasks (including handling hazardous cancer drugs) during pregnancy and breast feeding. 185 (29%) also responded that nurses at their workplaces did not receive an introductory education program before handling hazardous drugs. In total, 346 (55%) of the nurses reported that their workplace had a freedom to speak-up guardian or whistle blower policy for members of staff.Conclusions: Even if most nurses report that there are safety routines in place at their workplaces, the results reveal several serious occupational risks for European nurses handling hazardous cancer drugs. Actions are needed to improve and optimize occupational safety for nursing staff.
28.	Sharp, Lena, PhD, et al. (författare) Cancer prevention literacy among different population subgroups : challenges and enabling factors for adopting and complying with cancer prevention recommendations 2023 Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:10 Tidskriftsartikel (refereegranskat)abstract It is estimated that 40% of the cancer cases in Europe could be prevented if people had better information and tools to make healthier choices and thereby reduce some of the most important cancer risk factors. The aim of this study is to gain knowledge and understanding about cancer prevention literacy among people with intellectual disabilities, immigrants, young people and young cancer survivors. In this qualitative study, we conducted six online focus-group interviews, including forty participants, to explore the cancer prevention literacy of four population subgroups and determine how cancer prevention recommendations according to the European Code Against Cancer (ECAC) were perceived. The analysis resulted in the following main categories: current health beliefs and their impacts on how the ECAC recommendations were perceived, communication strategies and sources benefiting or hindering cancer prevention information from reaching out, and how vulnerabilities in these subgroups impact cancer prevention literacy. To improve cancer prevention literacy in Europe, more attention is needed this topic to overcome barriers among different population subgroups. Recommendations include improved and adapted cancer prevention information, support to individuals, as well as societal support, such as easy-access screening and vaccination programmes and regulations related to tobacco, alcohol, and diet.
29.	Sharp, Lena, et al. (författare) No differences between Calendula cream and aqueous cream in the prevention of acute radiation skin reactions : results from a randomised blinded trial 2013 Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 17:4, s. 429-435 Tidskriftsartikel (refereegranskat)abstract Purpose: The purpose of this blinded, randomized clinical trial was to compare two topical agents (Calendula Weleda (R) cream vs. Essex (R) cream) in reducing the risk of severe acute radiation skin reactions (ARSR) in relation to adjuvant radiotherapy (RT) for breast cancer.Method: The primary endpoint was the difference in proportion of patients with ARSR, assessed with the Radiation Therapy Oncology Group/The Organization for Research and Treatment of Cancer Acute Radiation Morbidity Scoring Criteria (RTOG/EORTC scale) at follow-up. The secondary endpoints included patient reported outcome measures; Quality of Life Questionnaire (QLQ-C30), Sleep disturbances (MOS-sleep questionnaire) and symptoms from the irradiated area (visual analogue scale). Patients' experiences and adherence to the topical agents were also evaluated.Results: A total of 420 patients were randomised and 411 were analysed. With the exception of previous chemotherapy, the treatment groups were well balanced, both regarding treatment- and patient-related factors. The incidence of severe ARSR (RTOG/EORTC grade <= 2) at the follow-up visit was 23% (n = 45) in the Calendula group and 19% (n = 38) in the Essex group. We found no difference in severe ARSR between the groups at any point of assessment. The patients reported low levels of skin related symptoms and no statistically significant differences between the groups were found.Conclusions: No differences in ARSR between patients randomised to Calendula or Essex cream was found. ARSR seem to be a relatively limited problem, probably more influenced by treatment related factors than by choice of skin care products in this patient group.
30.	Ullgren, Helena, et al. (författare) Exploring health care professionals’ perceptions regarding shared clinical decision-making in both acute and palliative cancer care 2022 Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:23 Tidskriftsartikel (refereegranskat)abstract Developments in cancer care have resulted in improved survival and quality of life. Integration of acute and palliative cancer care is desirable, but not always achieved. Fragmented care is associated with sub-optimal communication and collaboration, resulting in unnecessary care transitions. The aim of this study was to explore how health care professionals, from both acute and palliative care, perceive clinical decision-making when caring for patients undergoing active cancer treatment in parallel with specialized palliative care at home. Methods: Qualitative explorative design, using online focus-group interviews, based on patient-cases, among health care professionals (physicians and nurses) and Framework Analysis. Results: Six online focus-group interviews were performed. Few signs of systematic integration were found, risking fragmented care, and putting the patients in a vulnerable situation. Different aspects of uncertainty related to mandates and goals-of-care impacted clinical decision-making. Organizational factors appeared to hinder mutual clinical decision-making as well as the uncertainty related to responsibilities. These uncertainties seemed to be a barrier to timely end-of-life conversations and clinical decisions on optimal care, for example, the appropriateness of transfer to acute care. Conclusions: Lack of integration between acute and palliative care have negative consequences for patients (fragmented care), health care professionals (ethical stress), and the health care system (inadequate use of resources).
31.	Ullgren, Helena, et al. (författare) Factors associated with healthcare utilisation during first year after cancer diagnose : a population-based study 2021 Ingår i: European Journal of Cancer Care. - : John Wiley & Sons. - 0961-5423 .- 1365-2354. ; 30:2 Tidskriftsartikel (refereegranskat)abstract Background: Improved cancer treatments and models of care (such as early palliative care) has developed during recent years. Aspects of healthcare utilisation—unplanned care have been used for evaluation of coordination and quality. The aim was to explore factors associated with cancer healthcare utilisation, during the first year after a cancer diagnosis.Methods: Population‐based registry and patient‐reported data, (The European Organisation of Research and Treatment of Cancer (EORTC), QLQ‐ C30 questionnaire and study‐specific questions) were collected. Descriptive statistics and multivariate regression models were performed.Results: The sample consists of 1718 patients (haematological, gynaecological, upper gastrointestinal and head and neck cancers). Living alone were associated with unplanned hospital admissions (OR 1.35; 95% CI [1.15, 1.59], p < 0.001). Patients with specialised palliative home care had a higher likelihood of unplanned hospital admissions, (OR 4.35; 95% CI [3.22‐5.91], p < 0.001) and re‐admissions within 30 days, (OR, 5.8; 95% CI [4.12‐8.19], p < 0.001).Conclusions: Sociodemographic and clinical factors, such as living alone and disease stage, is associated with healthcare utilisation. Patients with specialised palliative home care report lower levels of HRQoL and higher levels of unplanned care, and our findings stresses the importance of a holistic view when planning care.
32.	Ullgren, Helena, et al. (författare) Health care utilization at end of life among patients with lung or pancreatic cancer. Comparison between two Swedish cohorts 2021 Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 16:7 Tidskriftsartikel (refereegranskat)abstract Objectives: The purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer.Setting: We used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden.Primary and secondary outcomes: Main outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery.A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts.Results: Intensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient β; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (β = 0.69, SE = 0.26, p = 0.007).Conclusion: These findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients.
33.	Ullgren, Helena, et al. (författare) Uncertainty when caring for patients with complex cancer care trajectories - perceptions of health care professionals from acute and palliative care regarding clinical decision-making Annan publikation (övrigt vetenskapligt/konstnärligt)
34.	Ullgren, Helena, 1972- (författare) Who cares? Fragmentation or integration of cancer care 2021 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Background: New cancer treatments and increased accessibility of palliativecare have resulted in improved treatment outcomes. Coordination andcommunication between different health care professionals and providers mayimpact patient satisfaction and quality of care. The phases of curativetreatments, palliative and end-of-life care, are now less distinct and oftenoverlap, which may challenge clinical decision-making and the assessment ofthe patient’s prognosis. It is recommended that palliative care is integratedalongside acute cancer care and introduced earlier in the disease trajectoryconcurrent with ongoing cancer treatment and follow-up. Health care utilizationcan be defined as the description and quantification of how a patient uses healthcare services to improve a health problem and/or increase wellbeing. One of theways of measuring the quality of care and the performance of a health caresystem is to analyze different aspects of health care utilization. Intensity oftreatment and care at the end of life is a measure of quality and may identifyareas of end-of-life care organization that are in need of improvement. Recentresearch indicates that certain socioeconomic factors might impact health careutilization and intensity of treatment and care at the end of life.Aim: To explore different aspects of health care utilization for patients withcomplex cancer care trajectories in a changing cancer care.Methods: In this thesis a combination of quantitative data, both populationbasedregistry, survey (studies I-III) and qualitative data from focus groupinterviews (study (IV), were used. The participants are patients with complexcancer care trajectories (studies I-III), nurses and physicians from acute cancercare and specialized palliative care at home (study IV) in the region ofStockholm, Sweden. The purpose was to explore health care utilization fromdiagnosis to the end of life.Results: The results of studies I –III show several factors associated withhigher levels of health care utilization; living alone, younger age, more advanceddisease stage and multimodality treatment. In addition, the group with bothacute cancer and SPC at home are a vulnerable group with higher levels ofsymptoms and unplanned/acute care, risking unnecessary care transitions.Study I (203 patients with head and neck cancer) revealed lower satisfactionwith the amount of information received regarding diagnosis and treatment inthe group having a palliative care referral. Study II (1718 patients with head andneck, gynecological, upper gastrointestinal or hematological cancer) found thatnearly a quarter of those with both acute cancer and SPC at home care hadmultiple (three or more) unplanned hospital admissions. Study III (1726patients with lung or pancreatic cancer) found increased levels of intensity ofivcare when comparing the years 2010 and 2017, and a shift of care from inpatientto outpatient care. The results of study IV (23 participants in six focus groups)indicates uncertainty among health care professionals in both acute andpalliative cancer care regarding their organization, mandate, andresponsibilities as well as the prognosis of the patients. Participants from bothsettings (acute and palliative cancer care) discussed their responsibilities and itappeared to be clear for them who was responsible for symptom management(palliative care) and cancer treatments (acute cancer care). However,uncertainties about the overarching, holistic responsibility.Conclusions and clinical implications: In summary, our findings describecancer care in one large region of Sweden and issues related to fragmentationand health care utilization. These issues have consequences that may impactpatients, informal caregivers, the health care system, and health careprofessionals in terms of quality and safety. There are several suggestions forimprovements, such as a focus on integration of care on all levels (policy andorganization) and building a system steered primarily by the quality of care in aperson-centered integrated system.
35.	Ullgren, Helena, et al. (författare) Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral 2017 Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 26, s. 56-62 Tidskriftsartikel (refereegranskat)abstract Purpose: The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information.Methods: H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire.Key results: Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000).Conclusion: To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed.
36.	Westman, Bodil, et al. (författare) It takes two to tango : Agreement between patients and contact nurses on opportunities for patient participation in cancer care 2023 Konferensbidrag (övrigt vetenskapligt/konstnärligt)
37.	Westman, Bodil, et al. (författare) Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act 2018 Ingår i: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 57:3, s. 382-392 Tidskriftsartikel (refereegranskat)abstract Introduction: Several supportive care strategies are described in Swedish legislation and policy documents, such as the National Cancer Strategy and the Patient act. No previous systematic evaluation from a patient perspective has been performed. The aim of this study was to evaluate how these supportive care strategies are experienced by patients treated for cancer in the Stockholm-Gotland region.Material and methods: In this cross-sectional study, we identified patients (diagnosed with gynaecological, haematological, upper gastrointestinal and head and neck cancer during 2014) from the Swedish Cancer Register. The European Organization of Research and Treatment of Cancer, EORTC, Quality of Life Questionnaires, QLQ-C30, Information QLQ-INFO25 and a study-specific questionnaire was used to collect data during follow-up after cancer treatment. We collected data on 869 cancer patients' perception of availability and access to supportive care strategies and how they were experienced.Results: Among the supportive care strategies suggested in the legislation and policy documents, just over half of the patients (n=393, 53%) reported that they had access to a contact nurse, while 43% (n=312) had received an individual written care plan and 16% (n=137) had been referred to palliative care. Only 29% (n=218) of the patients reported that they had received information about patient advocacy groups and 8% (n=62) on medical second opinions from their cancer care team.Discussion: The supportive care strategies suggested in Swedish legislation and policy documents may be useful but are only available for some patients. The implementation goals for the National Cancer Strategy and the Swedish Patient act have not been reached.
38.	Westman, Bodil, et al. (författare) Patienters erfarenheter av delaktighet i cancervården 2022 Konferensbidrag (övrigt vetenskapligt/konstnärligt)
39.	Westman, Bodil, et al. (författare) Patients and contact nurses (CN) views on opportunities for patient participation in cancer care : An on-going study 2022 Konferensbidrag (övrigt vetenskapligt/konstnärligt)
40.	Westman, Bodil, et al. (författare) Patients with low activation level report limited possibilities to participate in cancer care 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 914-924 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing.OBJECTIVE: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health-related quality of life (HRQoL) and helpfulness of received information.METHODS: In this cross-sectional population-based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.RESULTS: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision-making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.CONCLUSION: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.PATIENT OR PUBLIC CONTRIBUTION: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.
41.	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.
42.	Wode, Kathrin, 1968-, et al. (författare) Communication about complementary and alternative medicine when patients decline conventional cancer treatment : patients' and physicians' experiences 2023 Ingår i: The Oncologist. - : Oxford University Press. - 1083-7159 .- 1549-490X. ; 28:9, s. e774-e783 Tidskriftsartikel (refereegranskat)abstract Background: Complementary and alternative medicine (CAM) is a broad set of nonconventional practices used alongside or instead of conventional treatment: The latter poses obvious risks related to cancer prognosis. Patient-physician dialogue about CAM is crucial for patient safety and mutual trust. Little is known about communication in the rare situations when patients decline recommended cancer treatment and consider using CAM. The objective of this study was to explore patients' and physicians' experiences from situations when patients decline recommended cancer treatment and consider using CAM.Materials and methods: Semi-structured interviews were carried out with 7 CAM-using cancer patients who had declined some or all conventional treatment as well as 10 physicians from oncology and palliative care. Framework analysis was used.Results: Regarding treatment choices, there was a dissonance between physicians' focus on medical reasoning and patients' expression of complex values. Physicians' difficulty in understanding patients' treatment decline was exacerbated when patients considered using CAM, impairing communication even further. Inequalities in roles resulting in power struggles risked pushing both parties toward extreme and inflexible standpoints. Despite these challenges regarding treatment choices and hierarchical roles, both parties considered open and respectful communication as crucial.Conclusions: This study highlights the difficulty of shared decision-making in practice when patients' and physicians' views on treatment decisions deviate in clinically challenging situations. Our results point to a need to address the complexity of these situations, pay attention to patients' values, and improve knowledge among physicians about CAM.
43.	Wode, Kathrin, 1968- (författare) Complementary and alternative medicine in cancer : from utilization to a randomized controlled trial 2022 Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract Background: Complementary and alternative medicine (CAM) are non-conventional health care approaches used in parallel with or instead of conventional medicine. Little is known about Swedish patients’ patterns of complementary CAM use in the context of cancer. Patient-provider communication concerning CAM is crucial and research about communication in situations when patients decline recommended cancer treatment and consider CAM as an alternative is scarce. One commonly used CAM approach is an herbal medicinal product from mistletoe. An open-label trial on mistletoe extract for patients with advanced pancreatic cancer reported promising results on overall survival and quality of life. Due to limited treatment options for this group of patients, this approach needs to be investigated further. Aim: The overall aim of this thesis is to explore CAM use from patients’ and physicians’ perspectives and to design a placebo-controlled randomized clinical trial to assess mistletoe extract as a complement to standard treatment in patients with advanced pancreatic cancer. Methods: A cross-sectional design with quantitative and qualitative mixed methods was used in Study I including 755 patients with solid tumors. In Study II a qualitative design with face-to-face interviews with seven patients with cancer and ten physicians from cancer care was used. In Study III, a study protocol for a multicenter, parallel group, double-blind, randomized, placebo-controlled clinical trial (RCT) was developed. Mixed methods were used by two nested ancillary studies on sub-sets of participants with a translational and a qualitative design respectively. Patients with advanced pancreatic cancer (n=290) were included; mistletoe extract/placebo was added to treatment of choice for the duration of nine months. The trial is currently being conducted. Results: One of four patients with solid tumors used CAM parallel with conventional treatment. Main reasons motivations were the hope for improvement of physical, general, and emotional wellbeing and the body’s ability to fight cancer. Satisfaction with CAM usage was generally high; reported adverse effects few and mild. One third had discussed their CAM use with cancer care providers. More than half of the patients thought that cancer care providers should be able to discuss and/or consider use of CAM modalities in cancer care. Patients declining conventional cancer treatment while using CAM had a variety of reasons for their choices: many of them valued CAM for a broader perspective on health and illness in the context of mind, body and spirit. The wish to take an active stance in relation to treatment decisions and previous negative experiences from conventional care were also cited as motives. Some patients felt a lack of respect for their choices and indicated lack of knowledge and interest on their physicians’ part. Some physicians felt a need for better expertise in CAM while others did not. Patients’ choice to decline cancer treatment was an ethical dilemma to most of the interviewed physicians. Even though communication in these situations tended to push some patients and physicians to take an extreme position, both parties wished for an open dialogue with mutual trust and understanding.The study protocol of Study III was designed and published according to the Standard Protocol Items for Clinical Trials (SPIRIT) guidelines. The trial started inclusion in 2016 and has been running at nine participating oncological departments. Inclusion was completed in December 2021 and expected end-of-study is September 2022. Thirty-one interviews have been conducted within the ancillary qualitative study and 100 patients were included in the biomarker study.Conclusions: Many patients with cancer use CAM, mainly as a complement to conventional treatment to improve wellbeing. Most have realistic expectations, express high satisfaction and awareness of side effects. In rare cases, patients decline conventional cancer treatment and use CAM as an alternative for complex reasons that are worthwhile to explore in concrete situations. Patients generally wish to stay in contact with cancer care but demand interest in and respect for their choices. The majority of CAM-using patients perceive a lack of knowledge about CAM among cancer care providers and do often not reveal their CAM use; however, patients want providers to be knowledgeable and able to give advice. Shared decision-making appears extra difficult in the clinically demanding situations when patients’ and physicians’ views on treatment choices profoundly diverge. Knowledge about CAM and competency in giving nuanced advice to interested patients seem crucial for an initiated patient-provider dialogue for safety reasons, patient satisfaction and mutual trust. Both design and conduct of the RCT are an example of research filling an identified gap of knowledge and will provide cancer care with much-needed information. The design and conduct of this trial as well as its future results may serve as a model for CAM knowledge capacity building. Evidence-based medicine is the practice of integrating individual clinical expertise and patient values with the best available external clinical evidence from systematic research. This thesis pays attention to patients’ values, builds professional competency and experience within CAM and acknowledges and contributes to systematic research.
44.	Wode, Kathrin, et al. (författare) Efficacy of mistletoe extract as a complement to standard treatment in advanced pancreatic cancer : study protocol for a multicentre, parallel group, double-blind, randomised, placebo-controlled clinical trial (MISTRAL) 2020 Ingår i: Trials. - : BioMed Central. - 1745-6215. ; 21:1 Tidskriftsartikel (refereegranskat)abstract Background: Most pancreatic cancer patients present with advanced stage at diagnosis with extremely short expected survival and few treatment options. A multimodal palliative approach is necessary for symptom relief and optimisation of health-related quality of life. In a recent open-label trial of mistletoe extract for advanced pancreatic cancer patients not eligible for chemotherapy, promising results on improved overall survival and better health-related quality of life were reported.The objective of the present study is to assess the value of mistletoe extract as a complement to standard treatment (palliative chemotherapy or best supportive care) in advanced pancreatic cancer patients with regard to overall survival and health-related quality of life.Methods: The trial is prospective, randomised, double-blind, multicentre, parallel group and placebo-controlled. In total, 290 participants are randomly assigned to placebo or mistletoe extract given subcutaneously in increasing dosage from 0.01 to 20 mg three times per week for 9 months. Stratification is performed for site and palliative chemotherapy. Main inclusion criteria are advanced pancreatic cancer and Eastern Cooperative Oncology Group performance status 0 to 2; main exclusion criteria are life expectancy less than 4 weeks and neuroendocrine tumour of the pancreas. Two ancillary studies on sub-sets of participants are nested in the trial: a biomarker study collecting blood samples and a cross-sectional qualitative study with semi-structured face-to-face interviews.Discussion: To our knowledge, this is the first placebo-controlled randomised trial assessing the impact of mistletoe extract as a complement to standard treatment on overall survival and health-related quality of life in patients with advanced pancreatic cancer. The presented trial with its two nested ancillary studies exploring biomarkers and patient experiences is expected to give new insights into the treatment of advanced pancreatic cancer.
45.	Wode, Kathrin, 1968-, et al. (författare) Mistletoe extract in patients with advanced pancreatic cancer : a double-blind, randomized, placebo-controlled trial (MISTRAL) 2024 Ingår i: Deutsches Ärzteblatt International. - : Deutscher Arzte-Verlag GmbH. - 1866-0452. ; 121:11, s. 347-354 Tidskriftsartikel (refereegranskat)abstract Background: Patients with advanced pancreatic cancer have limited survival and few treatment options. We studied whether mistletoe extract (ME), in addition to comprehensive oncological treatment and palliative care, prolongs overall survival (OS) and improves health-related quality of life (HRQoL).Methods: The double-blind, placebo-controlled MISTRAL trial was conducted in Swedish oncology centers. The main inclusion criteria were advanced exocrine pancreatic cancer and Eastern Cooperative Oncology Group (ECOG) performance status 0–2. The subjects were randomly assigned to ME (n=143) or placebo (n=147) and were stratified by study site and by eligibility (yes/no) for palliative chemotherapy (June 2016–December 2021). ME or placebo was injected subcutaneously three times a week for nine months. The primary endpoint was overall survival (OS); one of the secondary endpoints was the HRQoL dimension global health/ QoL (EORTC–QLQ–C30), as assessed at seven time points over nine months.Trial registration: EudraCT 2014–004552–64, NCT02948309Results: No statistically significant benefit of adding ME to standard treatment was seen with respect to either OS or global health/ QoL. The adjusted hazard ratio for OS was 1.13 [0.89; 1.44], with a median survival time of 7.8 and 8.3 months for ME and placebo, respectively. The figures for the HRQoL dimension “global health/QoL” were similar in the two groups (p=0.86). The number, severity, and outcome of the reported adverse events were similar as well, except for more common local skin reactions at ME injection sites (66% vs. 1%).Conclusion: ME is unlikely to have a clinically significant effect on OS or the HRQoL dimension global health/QoL when administered in patients with advanced pancreatic cancer in addition to comprehensive cancer care.

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