Background: Informed consent is a prerequisite for patients included in clinical trials. Trial design, inclusion criteria and legal requirements are increasingly complex. This complexity challenges design and delivery of written and oral trial information to ensure understandable information.
View Article and Find Full Text PDFBackground: Clinical cancer trials are crucial for the implementation of new treatments in the clinical setting, but it is equally crucial that patients are given the opportunity to make a well-informed decision about participation. The inclusion process is complex, including both oral and written information about the trial. The process of patients' decision-making regarding clinical cancer trials has not yet been sufficiently studied.
View Article and Find Full Text PDFIn 2015, the Swedish government initiated a national cancer reform program to standardize cancer care pathways. Primary aims included shortened waiting times among patients with suspected cancer, increased patient satisfaction and reduced regional variation. The implementation phase of the program is now more than half way through and both achievements and challenges have been identified.
View Article and Find Full Text PDFStarting in 2015, the Swedish government has initiated a national reform to standardize cancer patient pathways and thereby eventually speed up treatment of cancer. Cancer care in Sweden is characterized by high survival rates and a generally high quality albeit long waiting times. The objective with the new national program to standardize cancer care pathways is to reduce these waiting times, increase patient satisfaction with cancer care and reduce regional inequalities.
View Article and Find Full Text PDFBMC Health Serv Res
February 2016
Background: Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed consent is possible to provide. We explored patient representatives' views and perceptions on the written trial information used in clinical cancer trials.
View Article and Find Full Text PDFPossibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis.
View Article and Find Full Text PDFObjective: Most individuals who learn about hereditary cancer manage well, but identification of subgroups who find this knowledge burdening would allow psychosocial intervention. The objective of the study was to assess sense of coherence (SOC) in individuals with Lynch syndrome with comparison to a general population and correlation to self-concept.
Methods: A total of 345 individuals with Lynch syndrome completed the 13-item SOC scale and the 20-item Lynch syndrome self-concept scale.
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.
View Article and Find Full Text PDFAn increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome.
View Article and Find Full Text PDFLearning about hereditary cancer may influence an individual's self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada.
View Article and Find Full Text PDFBackground: Identification and adequate management of individuals at risk for hereditary nonpolyposis colorectal cancer (HNPCC) is crucial since surveillance programmes reduce morbidity and mortality. We investigated knowledge about key features of HNPCC in at risk individuals and physicians in surgery, gynecology and oncology.
Methods: Data were collected using a questionnaire which was answered by 67 mutation carriers and 102 physicians from the southern Swedish health care region.
Communicating cancer risk and recommending adequate control programs is central for genetic counseling. Individuals affected by hereditary nonpolyposis colorectal cancer (HNPCC) are at about 80% life-time risk of colorectal cancer and for female carriers 40-60% risk of endometrial cancer and 10-15% risk of ovarian cancer. The perceived risk among mutation carriers may, however, deviate from the risk communicated and has been demonstrated to influence adherence to control programs.
View Article and Find Full Text PDFBackground: 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.
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.
View Article and Find Full Text PDFObjective: The 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.
Methods: The 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.
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.
Patient associations for cancer patients (PACPs) are increasing in number as well as in the number of members. We utilised a questionnaire to investigate how members of 13 PACPs motivated their memberships. The study included 1,810 individuals who had been treated for breast cancer, gynaecological cancer, or prostate cancer.
View Article and Find Full Text PDFRelationships between attending a stress management and relaxation-training program, glycemic control (HbA(1c)) and mood were examined in two randomised groups of 31 persons with Type 1 diabetes. The program involved group-education 2 h a week for 14 weeks. Whereas one group received the program, the other acted as a control group and received the program later.
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