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Background. The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. Material and methods. Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. Results. Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. Discussion. In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care. [ABSTRACT FROM AUTHOR]

This paper summarizes a comprehensive study of cancer survival in Sweden from 1960 to 1998. A total of 1 021 421 persons and 40 different cancer sites were included in the analyses. The main outcome measure is the relative survival rate (RSR) for different sites and follow-up times after diagnosis. The 10-year RSR for all sites combined has increased steadily--from 26.6% among men and 41.8% among women in the 1960s, to 44.6% (men) and 57.6% (women) in the 1990s. The expectation of life for a person diagnosed with cancer today is about 7 years longer than that of one diagnosed during the mid-1960s. About 3 years are gained due to changes in the relative distribution of various cancer types and about 4 years due to improved relative survival. During the 1990s substantial survival improvements were observed not only for uncommon types, such as testicular cancer, Hodgkin's lymphoma and some other haematologic malignancies, but also for cancer of the rectum, kidney and malignant melanoma. Survival for breast and cervical cancer also improved during the 1990s, but not that for pancreatic, liver or lung cancer. [ABSTRACT FROM AUTHOR]

The article focuses on the diagnosis of locally recurrent head and neck squamous cell carcinoma (LRC) in Nordic Head and Neck Cancer (HNC) centers and the feasibility of using the Odense-Birmingham definition for uniform diagnosis. Topics discussed include the variation in clinical practice for classifying LRC versus second primary carcinoma (SPC) and the impact of introducing the Odense-Birmingham definition on diagnostic decisions among HNC specialists.

The article focuses on assessing severe pneumococcal disease risks in splenectomized Hodgkin lymphoma patients from 1973 to 1995 in Sweden. Topics include the historical context of splenectomy, varying prophylactic measures in different countries, and the decreasing incidence of severe pneumococcal infections in more recent decades among splenectomized patients in Sweden.

We hypothesised that the use of the anti-androgenic drug 5α-reductase inhibitors (5-ARIs) improves survival in patients with oesophago-gastric cancer. This nationwide Swedish population-based cohort study included men who underwent surgery for oesophageal or gastric cancer between 2006-2015, with follow-up until the end of 2020. Multivariable Cox regression estimated hazard ratios (HR) for associations between 5-ARIs use and 5-year all-cause mortality (main outcome) and 5-year disease-specific mortality (secondary outcome). The HR was adjusted for age, comorbidity, education, calendar year, neoadjuvant chemo(radio)therapy, tumour stage, and resection margin status. Among 1769 patients with oesophago-gastric cancer, 64 (3.6%) were users of 5-ARIs. Compared to non-users, users of 5-ARIs were not at any decreased risk of 5-year all-cause mortality (adjusted HR 1.13, 95% CI 0.79-1.63) or 5-year disease-specific mortality (adjusted HR 1.10, 95% CI 0.79-1.52). Use of 5-ARIs was not associated with any decreased risk of 5-year all-cause mortality in subgroup analyses stratified by categories of age, comorbidity, tumour stage, or tumour subtype (oesophageal or cardia adenocarcinoma, non-cardia gastric adenocarcinoma, or oesophageal squamous cell carcinoma). This study did not support the hypothesis of improved survival among users of 5-ARIs after curatively intended treatment for oesophago-gastric cancer. [ABSTRACT FROM AUTHOR]

The stage at diagnosis is one of the most important predictors for cancer survival. TNM stage is constructed from T (tumor size), N (nodal spread), and M (distant metastasis) components. In many notifications to cancer registries, TNM information is incomplete with unknown N and/or M. We aimed to evaluate the influence of various assumptions for recoding missing N (NX) and M (MX) as N0 and M0 on the proportion with available TNM stage, stage-distribution, and stage-specific relative survival. We identified 140,201 patients diagnosed with incident cancer of the colon, rectum, lung, breast, or kidney during 2014–2016 in Denmark, Norway, Sweden, or Iceland. Information on TNM were obtained from cancer registry records used for an update of the Nordic cancer statistics database NORDCAN. Patients were followed for death or emigration through 2017. We calculated proportions of available TNM stage, stage distribution, and stage-specific relative survival under different approaches for each cancer site and country. Application of the assumptions yielded higher numbers of cases with available TNM stage for stages 0–I, II, and III. We observed only minor differences in stage-specific one-year relative survival when applying N0M0 for missing N and M, especially for high completeness of TNM registrations, whereas relative survival for remaining cases with missing TNM stage declined substantially. We found no major changes in stage-specific one-year relative survival applying N0M0 for NXMX. We conclude that complete TNM information is preferable to making assumptions, but it seems reasonable to consider assuming N0M0 for missing N and M in future studies based on the Nordic cancer registries. An automatic algorithm, though, is not recommended without considering potential area-specific reasons for frequent use of NX and MX. Clinicians should be urged to report complete TNM information to improve surveillance of the TNM stage. [ABSTRACT FROM AUTHOR]

Self-reported sex problems among women diagnosed with reproductive and nonreproductive cancers before the age of 40 are not fully understood. This study aimed to determine sexual dysfunction in young women following a cancer diagnosis in relation to women of the general population. Furthermore, to identify factors associated with sexual dysfunction in women diagnosed with cancer. A population-based cross-sectional study with 694 young women was conducted 1.5 years after being diagnosed with cancer (response rate 72%). Potential participants were identified in national quality registries covering breast and gynecological cancer, lymphoma and brain tumors. The women with cancer were compared to a group of women drawn from the general population (N = 493). Sexual activity and function were assessed with the PROMIS® SexFS. Logistic regression was used to assess differences between women with cancer and the comparison group, and to identify factors associated with sexual dysfunction. The majority of the women with cancer (83%) as well as the women from the comparison group (87%) reported having had sex the last month (partner sex and/or masturbation). More than 60% of the women with cancer (all diagnoses) reported sexual dysfunction in at least one of the measured domains. The women with cancer reported statistically significantly more problems than women of the comparison group across domains such as decreased interest in having sex, and vaginal and vulvar discomfort. Women with gynecological or breast cancer and those receiving more intense treatment were at particular high risk of sexual dysfunction (≥2 domains). Concurrent emotional distress and body image disturbance were associated with more dysfunction. The results underscore the need to routinely assess sexual health in clinical care and follow-up. Based on the results, development of interventions to support women to cope with cancer-related sexual dysfunction is recommended. [ABSTRACT FROM AUTHOR]

Squamous cell cancer of the anus is an uncommon malignancy, usually caused by human papilloma virus (HPV). Chemoradiotherapy (CRT) is the recommended treatment in localized disease with cure rates of 60–80%. Local failures should be considered for salvage surgery. With the purpose of improving and equalizing the anal cancer care in Sweden, a number of actions were taken between 2015 and 2017. The aim of this study was to describe the implementation of guidelines and organizational changes and to present early results from the first 5 years of the Swedish anal cancer registry (SACR). The following were implemented: (1) the first national care program with treatment guidelines, (2) standardized care process, (3) centralization of CRT to four centers and salvage surgery to two centers, (4) weekly national multidisciplinary team meetings where all new cases are discussed, (5) the Swedish anal cancer registry (SACR) was started in 2015. The SACR included 912 patients with a diagnosis of anal cancer from 2015 to 2019, reaching a national coverage of 95%. We could show that guidelines issued in 2017 regarding staging procedures and radiotherapy dose modifications were rapidly implemented. At baseline 52% of patients had lymph node metastases and 9% had distant metastases. Out of all patients in the SACR 89% were treated with curative intent, most of them with CRT, after which 92% achieved a local complete remission and the estimated overall 3-year survival was 85%. This is the first report from the SACR, demonstrating rapid nation-wide implementation of guidelines and apparently good treatment outcome in patients with anal cancer in Sweden. The SACR will hopefully be a valuable source for future research. [ABSTRACT FROM AUTHOR]

Patients with advanced prostate cancer (PCa) typically undergo numerous lines of treatment leading to large amounts of information in Electronic Health Records (EHRs). The Patient-overview Prostate Cancer (PPC) presents clinical information in a graphical overview. The aim of this study was to measure time spent on retrieving clinical information in PPC compared to EHRs, to assess if retrieved data was correct and to explore usability of PPC. Oncologists, urologists and nurses in three hospitals in Sweden were timed when filling out questionnaires about patients using PPC and two different EHRs; Melior and COSMIC. Time and number of errors were analysed using linear mixed models (LMMs). Usability of PPC was measured with the System Usability Scale. The LMM showed a significantly shorter time to retrieve information in PPC compared to EHRs. The estimated time to complete one questionnaire was 8 minutes (95% CI = 6–10, p < 0.001) in PPC compared to 25 minutes in Melior and 21 minutes in COSMIC. Compared to PPC, the estimated time difference was 17 minutes longer in Melior (95% CI = 14–20, p < 0.001) and 13 minutes longer in COSMIC (95% CI = 10–17, p < 0.001). The LMM showed significantly fewer errors in PPC compared to Melior. No significant difference in the number of errors was found between PPC and COSMIC. The usability of PPC was rated as excellent by oncologists, urologists and nurses. A graphical overview of a patient's medical history, as in PPC, gives health staff rapid access to relevant information with a high degree of usability. [ABSTRACT FROM AUTHOR]

Good clinical research is often conducted in close collaboration between patients, the public, and researchers. Few studies have reported the development of patient and public involvement (PPI) in research outside the United States and the United Kingdom, and for patients with more aggressive cancers. The study aimed to describe and evaluate the development of PPI in oesophageal cancer survivorship research in Sweden by the use of a framework to support the process. Oesophageal cancer survivors were recruited to a PPI research collaboration at Karolinska Institutet, Sweden. The development process was supported by the use of a framework for PPI, 'Patient and service user engagement in research'. Insights, benefits, and challenges of the process were described and discussed among the collaborators. The collaboration resulted in joint publications with a more patient- and family-focussed perspective. It also contributed to the development of information folders about survivorship after oesophageal cancer surgery and national conference arrangements for patients, their families, healthcare workers, and researchers. Since the PPI contributors were represented in patient organisations and care programmes, the dissemination of research results increased. Their contributions were highly valued by the researchers, but also revealed some challenges. The use of a structured framework contributed to support and facilitated the process of establishing PPI in research collaboration. A genuine interest in establishing PPI in research and an understanding and respect for the patients' expertise in providing a unique inside perspective was imperative for a successful collaboration. Research focus should not only be on mortality and reductions in daily life, but also on positive outcomes. Using a framework supports development and avoids pitfalls of PPI collaboration. Patient partners were equal collaborators in all aspects of the study. [ABSTRACT FROM AUTHOR]

Infertility is a well-known sequela of cancer treatment. Despite guidelines recommending early discussions about risk of fertility impairment and fertility preservation options, not all patients of reproductive age receive such information. This study aimed to investigate young adult cancer patients' receipt of fertility-related information and use of fertility preservation, and to identify sociodemographic and clinical factors associated with receipt of information. A population-based cross-sectional survey study was conducted with 1010 young adults with cancer in Sweden (response rate 67%). The inclusion criteria were: a previous diagnosis of breast cancer, cervical cancer, ovarian cancer, brain tumor, lymphoma or testicular cancer between 2016 and 2017, at an age between 18 and 39 years. Data were analyzed using logistic regression models. A majority of men (81%) and women (78%) reported having received information about the potential impact of cancer/treatment on their fertility. A higher percentage of men than women reported being informed about fertility preservation (84% men vs. 40% women, p <.001) and using gamete or gonadal cryopreservation (71% men vs. 15% women, p <.001). Patients with brain tumors and patients without a pretreatment desire for children were less likely to report being informed about potential impact on their fertility and about fertility preservation. In addition, being born outside Sweden was negatively associated with reported receipt of information about impact of cancer treatment on fertility. Among women, older age (>35 years), non-heterosexuality and being a parent were additional factors negatively associated with reported receipt of information about fertility preservation. There is room for improvement in the equal provision of information about fertility issues to young adult cancer patients. [ABSTRACT FROM AUTHOR]

The authors discuss a study on granulomatosis with polyangitis (GPA) and lymphoma, including possible risk factors for lymphoma and lymphoma subtypes treatment and survival. Topics include clinical data and analyses of lymphoma tissues, the use of the Swedish Patient Register and the International Classification of Disease coding system, and cyclophosphamide treatment for GPA and survival after lymphoma.

Objective: Danish ovarian cancer (OC) patients have previously been found to have worse prognosis than Swedish patients, and comorbidity has been suggested as a possible explanation for this survival difference. We aimed to investigate the prognostic impact of comorbidity in surgically treated OC patients in Denmark and Sweden. Methods: This comparative cohort study was based on data from 3118 surgically treated OC patients diagnosed in 2012-2015. The Swedish subcohort (n=1472) was identified through the Swedish National Quality Register of Gynecological Surgery, whereas the Danish subcohort (n=1646) originated from the Danish Gynecological Cancer Database. The clinical databases have high coverage and similar variables included. Comorbidity was classified according to the Ovarian Cancer Comorbidity Index and overall survival was the primary outcome. Data were analyzed using Kaplan Meier and Cox regression analyses. Multiple imputation was used to handle missing data. Results: We found comparable frequencies of the following comorbidities: Hypertension, diabetes and ‘Any comorbidity’. Arteriosclerotic cardiac disease and chronic pulmonary disease were more common among Swedish patients. Univariable survival analysis revealed a significant better prognosis for Swedish than for Danish patients (HR 0.84 [95% CI 0.74-0.95], p<.01). In adjusted multivariable analysis, Swedish patients had nonsignificant better prognosis compared to Danish patients (HR 0.91 [95% CI 0.80-1.04], p=.16). Comorbidity was associated with survival (p=.02) but comorbidity did not explain the survival difference between the two countries. Conclusions: Danish OC patients have a poorer prognosis than patients in Sweden but the difference in survival seems to be explained by other factors than comorbidity. [ABSTRACT FROM AUTHOR]

Background:Despite the negative impacts of several cancer treatments on fertility, many patients do not recall having fertility-related discussions with their physicians. This study was conducted to identify those factors related to physicians’ discussing the treatment impacts on fertility with cancer patients of reproductive age. Material and methods:In this nationwide survey of cancer care physicians (n = 329, response rate 55%), oncologists and hematologists (mainly) completed a questionnaire on practice behavior, barriers, attitudes and confidence in knowledge regarding treatment-related fertility risks. Logistic regression analyses were conducted to identify factors associated with not routinely discussing fertility issues with patients. Results:Most of the physicians agreed that they were responsible for discussing fertility issues with patients of reproductive age (91%), but approximately 30% did not do so regularly. Those factors decreasing the likelihood of discussion were: patient already had children (female/male OR 3.0/6.9), high workload (OR 3.3/4.8), seeing <5 female/male patients of reproductive age weekly (OR 3.2/3.4) and access to a reproduction clinic (OR 5.2/4.2). Conclusions:Most Swedish oncologists and hematologists regularly discuss impact of treatment on fertility with their patients. Those factors having a negative impact on fertility discussions may guide targeted organizational and educational efforts to further improve fertility-related communication in cancer care. [ABSTRACT FROM AUTHOR]

Purpose. The purpose of this study was to examine whether or not vaginal elasticity or lack of lubrication is associated with deep or superficial dyspareunia. We investigated gynecological cancer survivors treated with radiation therapy. Methods. In a population-based study with 616 women answering a questionnaire (participation rate 78%) and who were treated with radiotherapy for gynecological cancer, we analyzed information from 243 women (39%) who reported that they had had intercourse during the previous six months. Analyses included log-binomial regression (relative risks) and multiple imputations by chained equations in combination with Bayesian Model Averaging, yielding a posterior probability value. Age range of this cancer recurrent-free group of women was 29-80. Results. Dyspareunia affected 164 of 243 of the women (67%). One hundred thirty-four women (55%) reported superficial pain, 97 women (40%) reported deep pain, and 87 women (36%) reported both types of dyspareunia. The relative risk (RR) of deep dyspareunia was 1.87 (CI 1.41-2.49) with impaired vaginal elasticity compared to normal vaginal elasticity. Age and lower abdominal swelling were separate risk factors for deep dyspareunia. However, effects remain after adjusting for these factors. Conclusion. The relative risk of deep dyspareunia was almost twice as high with impaired vaginal elasticity compared to normal vaginal elasticity. If we wish to treat or even prevent deep dyspareunia in women with gynecological cancer, we may use our knowledge of the pathophysiology of deep dyspareunia and increasingly provide dilators together with instructions on how to use them for stretching exercises in order to retain vaginal elasticity. Results highlight the need for studies with more precise questions distinguishing superficial from deep dyspareunia so that in the future we may be able to primarily try to avoid reduced vaginal elasticity and secondarily reduce the symptoms. [ABSTRACT FROM AUTHOR]

Background. The objective of this study was: 1) to compare health-related quality of life (HRQoL) scores of breast cancer survivors to matched controls; and 2) to examine the relative impact (explained variance) of the type and number of co-morbidities on HRQoL. Material and methods. Data from the KARMA project was used in this cross-sectional study. For each woman diagnosed with breast cancer (n = 2552) there were two healthy age- and geographically matched females (n = 5104). Breast cancer survivors were categorized according to time since diagnosis: recently diagnosed (0-1 year), short- (2-5 years), mid- (6-10 years), and long-term survivors (> 10 years). Women completed a questionnaire addressing demographics (age, educational level, and geographical location), lifestyle factors (body mass index (BMI) and smoking), co-morbidities, and HRQoL. The difference in explained variance in six HRQoL-domains between demographics, lifestyle factors, and co-morbidity in women with breast cancer and matched controls was examined by hierarchical regression analyses. Results and conclusion. Women recently diagnosed (n = 63), reported the worst HRQoL followed by short-term survivors (2-5 years, n = 863). Thereafter, HRQoL scores further improved (6-10 years, n = 726), and were comparable to healthy females after 10 years (n = 893). Co-morbidity has a negative impact on HRQoL, which increased with time after diagnosis. Cardiovascular disease and depression were the strongest associates. Breast cancer survivors report clinically significant improvement in HRQoL scores six years after diagnosis. Co-morbidity has a negative impact on HRQoL, which increases with time after diagnosis, even though the number of co-morbidities remains stable. In long-term survivors there should be increasing awareness of co-morbidity and its impact on HRQoL. [ABSTRACT FROM AUTHOR]

Background. Lung cancer is associated with biomedical and psychological symptoms as well as a generally poor prognosis. When healthcare staff communicate with lung cancer patients it is essential that they consider the patients' own views of the situation to avoid putting unnecessary strain upon the patients' shoulders. The purpose of the present study is to better understand how a group of patients with lung cancer reflects upon their new life situation after diagnosis and primary treatment. Method. Fifteen patients with non-small cell lung cancer were consecutively included and, where possible, repeatedly interviewed during the course of the disease process. The 29 interviews were conducted in a thematically structured narrative form that facilitated a dialog between the interviewer and the patient. The interviews covered experiences with health care, living an everyday life, and thoughts about the future. Findings and reflections. By focusing on how the patients more or less preconsciously elaborated mentally with their vulnerable situation, it was possible to detect different mental manoeuvres that they used as a way of creating hope. The patients distanced themselves from their disease, relied on a feeling of a sound body, idealised treatment possibilities, relied on healthy behaviour, focused on a concrete project, found that they were better off than others, and took solace in the fact that there were patients who had successfully managed the disease. Discussion. The patients were not passive victims in the face of their diagnosis, but were actively trying to find ways of looking at their despairing situation in a positive light. A creative process for psychological survival had thus been initiated by the patients. We suggest that acknowledging this process should be the starting point from which physicians can engage in hope work with their patients. [ABSTRACT FROM AUTHOR]

Background. There is a need to establish clinically relevant thresholds (anchors) for identification of differences in health-related quality of life (HRQoL) and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors. Aim. To investigate HRQoL in childhood cancer survivors with a standardised instrument and to establish thresholds for clinically significant differences by using qualitative interviews as anchors. An additional aim was to investigate survivors' HRQoL in relation to an age-matched comparison group without cancer experience. Material and methods. Self-rated HRQoL (KIDSCREEN-27) was assessed in a national cohort of survivors (n = 63, aged 12-22) and a comparison group (n = 257, aged 11-23). Findings from qualitative interview data were also used (n = 61); three subgroups ('Feeling like anyone else'; 'Feeling almost like others'; 'Feeling different') were identified based on survivors own perception of influence on daily life. Effect size calculations based on means from the KIDSCREEN-27 dimensions were performed using the subgroups as anchors to indicate clinical importance. Furthermore, standard multiple regression analyses were performed. Results. Effect sizes between the subgroups 'Feeling like anyone else' and 'Feeling almost like others' and the group 'Feeling different' were large for all dimensions (1.04-2.07). The multiple regression models showed that being a survivor was significantly associated with one of the dimensions, School Environment, where survivors scored higher HRQoL. Furthermore, female sex and older age (17-23 years) significantly contributed to lower self-rated HRQoL. Conclusion. In clinical practice the KIDSCREEN-27 could be a useful screening tool to identify survivors of childhood cancer in need of extra support, using KIDSCREEN dimension mean values of 45 or less as thresholds. Larger scale studies are recommended to identify and test thresholds with regard to different age groups and time since diagnosis. [ABSTRACT FROM AUTHOR]

Background. Anxiety and depression in cancer patients are associated with poor health-related quality of life (HRQOL). Clinical interventions to detect and support patients with these symptoms need to be developed and evaluated. We investigated the feasibility of screening with the Hospital Anxiety and Depression Scale (HADS) in a clinical oncology setting. In patients with anxiety or depression symptoms (HADS >7) we explored the use of clinical assessment and psychosocial support and described the development of anxiety, depression and HRQOL during a six-month period. Material and methods. Four hundred and ninety-five consecutive patients were screened for anxiety and depression at the time of their first visit at an oncology department (baseline). Half of the patients with HADS >7 on any of the two HADS subscales were referred to clinical assessment and psychosocial support (intervention group, IG) and half received standard care (SCG) using a historical control group design. HADS and EORTC QLQ-C30 were completed at baseline and after one, three and six months. Results. One hundred and seventy-six (36%) of 495 patients had anxiety or depression symptoms at screening, HRQOL at baseline was clearly impaired for them. Thirty-six (43%) of 84 IG patients attended clinical assessment, resulting in subsequent psychosocial support for 20 (24%) of them. In the SCG, only five (5%) patients attended clinical assessment after self referral, two received subsequent psychosocial support. Anxiety and depression decreased and HRQOL increased statistically significantly over time although anxiety was frequent and HRQOL impaired during the entire six month period. There were no differences between the SCG and IG regarding anxiety, depression or HRQOL at any time point. Conclusion. Systematic screening with HADS is feasible for oncology patients in clinical settings; it identifies patients with persistent symptoms and increases referral to clinical assessment and utilisation of psychosocial support. [ABSTRACT FROM AUTHOR]

Background. Estimates of cancer patient survival from traditional cohort-based methods may be heavily influenced by the survival experience of patients diagnosed many years ago and may not therefore be relevant to recently diagnosed patients. Period-based analysis provides better predictions of survival for recently diagnosed patients than cohort analysis. The first aim of this study is to provide predictions of the long-term survival of patients diagnosed in 2005-2009 using period analysis and to compare these estimates to the latest available cohort estimates. The second aim is to evaluate predictions published in 2004 regarding the future survival of patients diagnosed 2000-2002. Material and methods. We studied survival among patients diagnosed 1985-2009 reported to the nationwide, population-based Swedish Cancer Registry. Predictions of the future relative survival for recently diagnosed patients were made using period analysis with a window of 2005-2009. Results. The predictions made using period analysis and published in 2004 agreed well with the subsequently observed survival, with common sites showing a better agreement than less common sites. Updated predictions suggest that patients diagnosed today can expect improved survival for many forms of cancer. Conclusions. Period, rather than cohort, survival analysis should be used if the primary aim is to predict the future survival of recently diagnosed patients. Recently diagnosed cancer patients can, for many forms of cancer, expect an improved survival compared to patients diagnosed only a few years earlier. [ABSTRACT FROM AUTHOR]

Background. Studies suggest an increased risk for compromised cognitive function among cancer survivors. It is unclear to what extent chemotherapy is the cause and how the dysfunction, when present, affects everyday life. The objective was to study self-reported behaviours that may depend on cognitive function, among testicular-cancer survivors who received various cycles of cisplatin-based chemotherapy by comparing them with those who did not. Material and methods. We identified 1173 eligible men diagnosed with non-seminomatous testicular cancer treated according to the national cancer-care programs SWENOTECA I-IV between 1981 and 2004. During an 18-month qualitative phase we constructed a study-specific questionnaire including questions about specific activities and behaviour in everyday life. Results. We obtained information from 960 of 1173 (82%) testicular-cancer survivors diagnosed on average 11 years previously. The prevalence of 'saying similar but incorrect words' at least once a week was 5% among those having received no chemotherapy versus 16% among those having received five or more cycles, giving a prevalence ratio ('relative risk', RR) of 3.3 with a 95% confidence interval of 1.5 to 7.1. The corresponding figure for 'saying words in the wrong order' was 3.1 (1.7-5.8), for 'difficulties understanding what other people mean' 3.1 (1.3-7.7), for 'saying words other than planned' 2.2 (1.1-4.5) and for 'difficulties completing sentences' 2.0 (1.0-3.6). The relative risks for those with a low level of education ranged between 4.9 (1.6-14.9) and 15.3 (1.9-120.5). Conclusion. Testicular-cancer survivors in Sweden who have received five or more cycles of cisplatin-based chemotherapy experience an increased incidence of long-term compromised language; the effect is primarily seen among men with a low level of education. [ABSTRACT FROM AUTHOR]

Aim. To obtain reference values for health-related quality of life (HRQL) measured with the European Organization for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire (QLQ-C30) in a random sample of the adult Swedish population. Methods. A population-based survey of a random sample of 7002 Swedish adults aged 40-79 years, frequency-matched to reflect the age and sex distribution of upper gastrointestinal cancer patients. Scales were scored on a 0-100 metric according to standard procedures. Functions and symptoms were dichotomized into 'poor' versus 'good' function, and 'symptomatic' and 'no or minor symptoms', respectively. The results were stratified for age and gender. Results. The questionnaire was completed by 4910 (70.5%) of 6969 eligible participants. Missing values were limited. HRQL was found to vary according to age and sex. Generally, men reported better functioning and fewer symptoms than women. The most common symptoms were fatigue, pain, and insomnia. Conclusion. The reference values provided can be used as a surrogate baseline measure in HRQL research, and when evaluating the effect of interventions on HRQL in cancer patients. [ABSTRACT FROM AUTHOR]

Background. The aim was to compare two individualized patient reported outcomes or the Schedule for the Evaluation of Individual Quality of Life -- Direct Weighting (SEIQoL-DW) measuring quality of life in general, and the disease-related version (SEIQoL-DR) measuring quality of life related to disease. Both instruments have been used in clinical practice settings within oncology. The instruments were compared with regard to feasibility, the areas nominated by patients as important and patients'' ratings of how they were doing in these areas (Index scores). Material and methods. The study included 40 patients with gastrointestinal cancer. All patients completed both versions of the instrument on a touch screen computer in relation to a medical consultation. Firstly, the participants were invited to nominate the five domains she/he currently considered to be most important in life. Secondly, they were asked to rate how they were doing in each of these domains. Finally, they were asked to quantify the relative importance of each area. Cohen's effect sizes were calculated to illuminate the clinical importance of mean value differences. Results. Both instruments took less than ten minutes to complete and the procedure was considered feasible by both patients and interviewers. The proportion of patients nominating the same areas in the two versions did not differ, however, the SEIQoL-DW Index score was significantly higher than the corresponding score for the SEIQoL-DR. The detected difference in the mean score measured by effect size was medium. Conclusion. The magnitude of the effect size of the difference in Index score imply that the two versions tap into different constructs, i.e. quality of life (QoL) versus health-related QoL (HRQL), supporting the construct validity of the two versions of the instrument. The SEIQoL-DW and the SEIQoL-DR should be considered as complementary rather than interchangeable when used in patients with cancer. [ABSTRACT FROM AUTHOR]

Background. Many patients treated with radiotherapy to the pelvic region report a change in bowel habits. Loose stools, urgency and fecal incontinence may have a significant impact on daily life and social functioning. Material and methods. We attempted to follow up 789 women, treated with pelvic radiotherapy for a gynecological cancer during 1991 to 2003 at two departments of gynecological oncology in Sweden. A control group of 478 women from the Swedish Population Registry was also included. As a preparatory study, we made in-depth interviews with 26 women previously treated for gynecological cancer. Based on their narratives, we constructed a study-specific questionnaire including 351 questions and validated it face-to-face. The questionnaire covered questions of physical symptoms originating in the pelvis, demographics, psychological and quality of life factors. In relation to bowel symptoms, 60 questions were asked. Results. Six-hundred and sixteen (78%) gynecological cancer survivors and 344 (72%) control women participated. Two-hundred and twenty-six (37%) cancer survivors reported loose stools at least once a week. Eighty-three percent of the survivors with loose stools every day reported defecation urgency with fecal leakage, compared to 20% of cancer survivors without loose stools. Cancer survivors with loose stools at least once a week were 7.7 times more likely to suffer from defecation urgency with fecal leakage (95% CI 4.4-13.3) compared to those who had loose stools once a month or less. In order to avoid loose stools affected survivors with loose stools often skipped meals (13%), made an active choice of food (47%) and preferentially used prescribed medication (36%). Discussion. There is a relation between loose stools and defecation urgency with fecal leakage among long-term gynecological cancer survivors treated with pelvic radiotherapy. Targeting loose stools can possibly help survivors to decrease frequency of fecal leakage. [ABSTRACT FROM AUTHOR]

Background. Metastatic cancer from an unknown primary tumour (CUP) is a common and heterogeneous clinical entity. In Sweden like in many other countries, the continuum of care for such patients remains to be established. Material and methods. Data on CUP cases reported to the Swedish Cancer Registry during 1960 through 2007 was used to assess time trends for incidence, survival, and histological tumour type. Results. There was an upward trend for the age-adjusted incidence until the late 1990s. This roughly paralleled the increase for all reported cancers during the same period. The increase of CUP mainly concerned patients aged above 50 years, and tumours classified as adenocarcinomas. The relative survival at 12 months after a diagnosis of CUP was estimated at 20%. However, after 12 months the relative survival levelled of and the 5-year estimate was 10-15% which suggests that a small proportion of CUP cases may be cured. Relative survival was highly dependent on age with substantially better outcome for young patients, particularly those aged below 30 years. We observed no time trend for survival. Discussion. Cases diagnosed as CUP includes patients with metastatic spread from a wide variety of tumours although certain tumour types probably are overrepresented, for example, cancers in sites that are difficult to examine clinically. Incidence trends probably represent the sum of trends for these cancers as well as diagnostic trends. The decreased incidence observed during the last decade might thus be explained in terms of a combination of improved diagnostic methods to detect primary tumours and decreasing incidence for e.g. pancreatic cancer and lung cancer among males. There is a need of evidence-based programs that define the continuum of care for CUP patients. Such a program is currently being developed through collaboration between all health care regions in Sweden. [ABSTRACT FROM AUTHOR]

The psychometric properties of a short but comprehensive quality-of-life instrument, developed especially for cancer patients in the palliative care setting are presented. Items from physical, psychological, social and existential domains are included. The findings suggest that the AQEL (Assessment of Quality of Life at the End of Life) instrument is both valid and reliable, but further trials with more patients are needed. [ABSTRACT FROM AUTHOR]

Describes a hospital-based facility for in vivo body protein monitoring in cancer patients in Sweden. Use of gamma neutron activation analysis; Measurement of gamma-rays from nitrogen; Introduction of a calibration method for absolute protein measurements.