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  • Bartuma, Katarina, et al. (författare)
  • Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations
  • 2012
  • Ingår i: Hereditary Cancer in Clinical Practice. - BioMed Central. - 1731-2302 .- 1897-4287. ; 10
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: A growing number of individuals are diagnosed with hereditary cancer. Though increased levels of anxiety and depression have been demonstrated around the time of genetic counselling, most individuals handle life at increased risk well. Data have, however, been collected on individual basis, which led us to focus on family perspectives of hereditary cancer. Methods: Lynch syndrome represents a major type of hereditary colorectal and gynaecological cancer. We preformed open-ended interviews with 27 informants from 9 Lynch syndrome families. Inductive content analysis revealed three major themes: transition to a risk family, patterns of communication and influence on family relations and individual roles. Results: Family members described how learning about Lynch syndrome shifted focus from daily issues to concerns about cancer. Changes in communication related to difficulties in talking to children about heredity and informing new family members and distant relatives about an increased risk of cancer. Influence on relations was exemplified by family members taking on different roles, e. g. females often being responsible for coordinating information about heredity and providing support. Families in which members had experienced cancer at young age typically informed children soon after learning about heredity and at young age, whereas families with experience of cancer at higher age postponed information and thereby also genetic counselling. Conclusions: Three major family perspectives are described in Lynch syndrome families; becoming a risk family, patterns of communication and influence on family relations. Since these issues are central, our findings suggests that such family perspectives should be considered during genetic counselling in order to contribute to information spread, help family members cope with the increased risk, and motivate family members at risk to undergo surveillance.
  • Bartuma, Katarina, et al. (författare)
  • Response to letter of Escobar et al.
  • 2008
  • Ingår i: International Journal of Gynecological Cancer. - 1525-1438 .- 1048-891X. ; 18, s. 1386-1386
  • Tidskriftsartikel (refereegranskat)
  • Brännström, Fredrik, et al. (författare)
  • Multidisciplinary team conferences promote treatment according to guidelines in rectal cancer
  • 2015
  • Ingår i: Acta Oncologica. - Informa Healthcare. - 0284-186X. ; 54:4, s. 447-453
  • Tidskriftsartikel (refereegranskat)abstract
    • Background. Multidisciplinary team (MDT) conferences have been introduced into standard cancer care, though evidence that it benefits the patient is weak. We used the national Swedish Rectal Cancer Register to evaluate predictors for case discussion at a MDT conference and its impact on treatment. Material and methods. Of the 6760 patients diagnosed with rectal cancer in Sweden between 2007 and 2010, 78% were evaluated at a MDT. Factors that influenced whether a patient was discussed at a preoperative MDT conference were evaluated in 4883 patients, and the impact of MDT evaluation on the implementation of preoperative radiotherapy was evaluated in 1043 patients with pT3c-pT4 M0 tumours, and in 1991 patients with pN + M0 tumours. Results. Hospital volume, i.e. the number of rectal cancer surgical procedures performed per year, was the major predictor for MDT evaluation. Patients treated at hospitals with less than 29 procedures per year had an odds ratio (OR) for MDT evaluation of 0.15. Age and tumour stage also influenced the chance of MDT evaluation. MDT evaluation significantly predicted the likelihood of being treated with preoperative radiotherapy in patients with pT3c-pT4 M0 tumours (OR 5.06, 95% CI 3.08 - 8.34), and pN + M0 (OR 3.55, 95% CI 2.60 -4.85), even when corrected for co-morbidity and age. Conclusion. Patients with rectal cancer treated at high-volume hospitals are more likely to be discussed at a MDT conference, and that is an independent predictor of the use of adjuvant radiotherapy. These results indirectly support the introduction into clinical practice of discussing all rectal cancer patients at MDT conferences, not least those being treated at low-volume hospitals.
  • Carlsson, Christina, et al. (författare)
  • Benefits from membership in cancer patient associations: relations to gender and involvement.
  • 2006
  • Ingår i: Acta oncologica. - 0284-186X. ; 45:5, s. 559-563
  • Tidskriftsartikel (refereegranskat)abstract
    • Cancer patient associations report a growing number of members and increasing possibilities to influence health care, but knowledge about the members' views on the benefit of involvement is scarce. We therefore investigated how members (n = 1742) of Swedish patient associations for breast cancer and prostate cancer rate the benefit of membership for their physical and psychological well-being and social adjustment to cancer. Using a scoring scale, 2/3 of the members reported that membership had benefit for psychological well-being, whereas half of the members reported benefit for physical well-being and social adjustment. Individuals who had been actively involved in board work and/or contact person activities within the associations reported significantly more benefit for all three parameters. Gender differences were observed with men, represented by individuals affected by prostate cancer, reporting greater benefit for all three parameters, although especially evident for psychological well-being. Individuals who obtained membership within two years of diagnosis reported greater benefit for psychological well-being and social adjustment compared to those who became members later. In conclusion, members in patient associations for cancer report benefit particularly for their psychological well-being and actively involved members and men affected by prostate cancer perceive the greatest benefit from membership.
  • Carlsson, Christina, et al. (författare)
  • Captured voices in cancer: experiences from networking between individuals with experiential and professional knowledge.
  • 2007
  • Ingår i: BMC health services research. - 1472-6963. ; 7
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Patients needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients ( PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences. Methods: Open-ended interviews were carried out with 16 individuals; 6 PACP members and 10 HCPs, and after transcription the texts were analysed by inductive content analysis. Results: Four voices, which represent various experiences from networking, were identified; the hesitant voice, the enlightened voice, the liberated voice, and the representative voice. The hesitant voice reflects uncertainty experienced when the participants were exposed to different views and opinions within the network. The enlightened voice reflects new points of view and gain of knowledge. The liberated voice signifies trust, balance, and confidence related to individual experiences and responsibilities being viewed in a broader perspective. The representative voice is derived from the transformation of experiences and responsibilities through insight, understanding, and new perspectives. Conclusion: Networking between representatives for PACPs and HCPs may help the participants manage uncertainty, strengthen the patient's perspective and provide new views on common issues. The different voices identified in this study demonstrate that both PACP members and HCPs distanced themselves from their individual experiences in order to be perceived as unselfish and knowledgeable within the network. Although the climate was characterized by trustfulness, the members' unique positions need to be defined in order to obtain an optimal balance between the groups and prevent members' patient experiences of losing their character by learning to much from the HCPs. Increased understanding of the hesitant, the enlightened, the liberated, and the representative voices, and awareness of experiential versus professional knowledge of cancer may facilitate and probably improve future networking efforts.
  • Carlsson, Christina, et al. (författare)
  • Living with Hereditary Non-polyposis Colorectal Cancer; Experiences from and Impact of Genetic Testing.
  • 2007
  • Ingår i: Journal of Genetic Counseling. - Springer. - 1059-7700 .- 1573-3599. ; 16:6, s. 811-20
  • Tidskriftsartikel (refereegranskat)abstract
    • Hereditary non-polyposis colorectal cancer (HNPCC) is one of our most common cancer syndromes and an increasing number of individuals live in families with verified hereditary cancer. We conducted an interview study to explore experiences from and perceived impact on life after genetic testing for HNPCC. Three major themes emerged: reactions and emotions, family relations and implications for life. Among the reactions described were suspecting heredity, feelings of guilt, the importance of experiential knowledge, and coping strategies. The impact on family relations was related to perceived responsibility for conveying information, encountering different reactions among family members, and difficulties in communication and relations. The implications described included uncertainty, adaptation, new choices and changes in life, family planning issues, and experiences of surveillance programs. We suggest that the themes and sub-themes identified should be taken into account during genetic counselling in order to facilitate the spread of information and to prepare family members for the impact on life that knowledge about hereditary cancer may have.
  • Carlsson, Christina, et al. (författare)
  • Patients' involvement in improving cancer care: experiences in three years of collaboration between members of patient associations and health care professionals.
  • 2006
  • Ingår i: Patient education and counseling. - 0738-3991. ; 61:1, s. 65-71
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectiveThe aim of this study was to explore how members of patient associations (PACPs) and health care professionals (HCPs) experience collaboration in a network initiated by the health care system and aimed at improving cancer care.MethodsThe participants were asked to describe, after 1 and 3 years, their experiences of collaboration. Data collected were in the form of a written answer to a single, open-ended question, and the answers were analysed using inductive content analysis.ResultsThe analysis revealed four themes: the impact of processes that occur within the network, the impact of learning, the impact of innovation and development in cancer care, and the impact of PACP members’ personal cancer experience. Statements about the impact of the processes that occur within the network dominated at both occasions.ConclusionThis study of experiences of collaboration provides new data on the importance ascribed to such efforts between patients in an organised association and HCPs.Practice implicationsWe suggest that differences in perceptions and expectations should be taken into account in future collaborations between representatives of patient associations and of health care systems in order to reach out and to influence developments in cancer care.
  • Carlsson, Christina, et al. (författare)
  • Supporter or obstructer; experiences from contact person activities among Swedish women with breast cancer.
  • 2005
  • Ingår i: BMC health services research. - 1472-6963. ; 5:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Swedish patient associations for breast cancer patients (PABCPs) offer patients with breast cancer unlimited meetings with a breast cancer survivor, a contact person (CP). We applied the voluntary action perspective in this interview study with members of Swedish PABCPs in order to explore how women with breast cancer experienced their contact with a CP from a PABCP.Methods: Audio-taped narratives from 8 women were analysed using Reissman's monitoring and Gee's analysis structure.Results: Three themes appeared: 1. Shared experiences give new perspectives on having cancer, 2. Feelings of isolation are a part of the identity of the illness and 3. Relations with others enable self-help. However, the relationship with the CP is sensitive to timing, correct information and understanding.Conclusions: CPs act as sounding boards and should optimally have capacity for listening, gives support and act as partner in this conversation. On the other hand, CPs should be aware that their presence and limited general medical knowledge could at times disturb the patient's psychological recovery and strengthen feelings of isolation. Thus, PABCPs must be careful in selecting CPs and offer relevant educational activities related to the themes identified herein.
  • Carneiro, Ana, et al. (författare)
  • A prognostic model for soft tissue sarcoma of the extremities and trunk wall based on size, vascular invasion, necrosis, and growth pattern.
  • 2011
  • Ingår i: Cancer. - 0008-543X .- 1097-0142. ; Dec, s. 1279-1287
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND:: In soft tissue sarcoma, better distinction of high-risk and low-risk patients is needed to individualize treatment and improve survival. Prognostic systems used in clinical practice identify high-risk patients based on various factors, including age, tumor size and depth, histological type, necrosis, and grade. METHODS:: Whole-tumor sections from 239 soft tissue sarcomas of the extremities were reviewed for the following prognostic factors: size, vascular invasion, necrosis, and growth pattern. A new prognostic model, referred to as SING (Size, Invasion, Necrosis, Growth), was established and compared with other clinically applied systems. RESULTS:: Size, vascular invasion, necrosis, and peripheral tumor growth pattern provided independent prognostic information with hazard ratios of 2.2-2.6 for development of metastases in multivariate analysis. When these factors were combined into the prognostic model SING, high risk of metastasis was predicted with a sensitivity of 74% and a specificity of 85%. Moreover, the prognostic performance of SING compared favorably with other widely used systems. CONCLUSIONS:: SING represents a promising prognostic model, and vascular invasion and tumor growth pattern should be considered in soft tissue sarcoma prognostication. Cancer 2010. © 2010 American Cancer Society.
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