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The aim of this population-based registry study was to explore how cancer influences the health of partners, by examining the onset of new diagnoses for partners, health care use and health care costs among partners living with patients with cancer. The sample consisted of partners of patients with cancer ( N = 10 353) and partners of age- and sex-matched controls who did not have cancer ( N = 74 592). Diagnoses, health care use and health care costs were studied for a continuous period starting 1 year before the date of cancer diagnosis and continued for 3 years. One year after cancer diagnosis, partners of patients with cancer had significantly more mood disorders, reactions to severe stress and ischaemic heart disease than they exhibited in the year before the diagnosis. Among partners of patients with cancer, the type of cancer was associated with the extent and form of increased health care use and costs; both health care use and costs increased among partners of patients with liver cancer, lung cancer, colon cancer and miscellaneous other cancers. The risk of poorer health varied according to the type of cancer diagnosed, and appeared related to the severity and prognosis of that diagnosis. [ABSTRACT FROM AUTHOR]

Background: Cost-effectiveness is important in the prioritisation between interventions in health care. Exercise is cost-effective compared to usual care during oncological treatment; however, the significance of exercise intensity to the cost-effectiveness is unclear. In the present study, we aimed to evaluate the long-term cost-effectiveness of the randomised controlled trial Phys-Can, a six-month exercise programme of high (HI) or low-to-moderate intensity (LMI) during (neo)adjuvant oncological treatment., Methods: A cost-effectiveness analysis was performed, based on 189 participants with breast, colorectal, or prostate cancer (HI: n  = 99 and LMI: n  = 90) from the Phys-Can RCT in Sweden. Costs were estimated from a societal perspective, and included cost of the exercise intervention, health care utilisation and productivity loss. Health outcomes were assessed as quality-adjusted life-years (QALYs), using EQ-5D-5L at baseline, post intervention and 12 months after the completion of the intervention., Results: At 12-month follow-up after the intervention, the total cost per participant did not differ significantly between HI (€27,314) and LMI exercise (€29,788). There was no significant difference in health outcome between the intensity groups. On average HI generated 1.190 QALYs and LMI 1.185 QALYs. The mean incremental cost-effectiveness ratio indicated that HI was cost effective compared with LMI, but the uncertainty was large., Conclusions: We conclude that HI and LMI exercise have similar costs and effects during oncological treatment. Hence, based on cost-effectiveness, we suggest that decision makers and clinicians can consider implementing both HI and LMI exercise programmes and recommend either intensity to the patients with cancer during oncological treatment to facilitate improvement of health.

Introduction: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics., Material and Methods: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic., Results: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed., Conclusion: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.

Background: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment., Methods: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis., Results: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation., Conclusion: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.

Background: Symptom management in conjunction with proton beam therapy (PBT) from patient's perspective has not been explored. Such knowledge is essential to optimize the care in this relatively new treatment modality., Objective: The aim of this study was to explore the process of symptom management in patients with brain tumor receiving PBT., Methods: Participants were 22 patients with primary brain tumor who received PBT, recruited in collaboration with a national center for proton therapy and 2 oncology clinics at 2 university hospitals in Sweden. Interviews using open-ended questions were conducted before, during, and/or after treatment. Verbatim interview transcripts were analyzed using classic Grounded Theory., Results: "The art of living with symptoms" emerged as the core concept. This encompassed 3 interconnected symptom management concepts: "Adapting to limited ability," "Learning about oneself," and "Creating new routines." These concepts were summarized in a substantive theoretical model of symptom management. Despite the struggle to manage symptoms, participants lived a satisfactory life., Conclusions: Symptom management in conjunction with PBT comprises a process of action, thoughts, and emotions. The concepts that emerged indicated patients' symptom management strategies were based on their own resources., Implications for Practice: It is important that PBT facilities develop an approach that facilitates the symptom management process based on patients' experiences of symptoms, as well as their actions and available resources.

Objectives: To explore symptom clusters during proton beam therapy in patients with primary brain tumors and investigate associations among symptom clusters, demographic variables, and comorbidity in this patient population., Sample & Setting: Data were collected from 187 adult patients with primary brain tumors during their treatment periods in the Skandion Clinic in Uppsala, Sweden. Symptoms were assessed with the Radiotherapy-Related Symptoms Assessment Scale, and comorbidity was evaluated with the Self-Administered Comorbidity Questionnaire., Methods & Variables: The study used a quantitative and longitudinal design. Exploratory factor analysis was used to determine the underlying structure of symptom clusters., Results: Three clusters were identified., Implications for Nursing: Building knowledge about how these symptoms interact and are clustered will support healthcare professionals to more efficiently relieve symptom clusters during proton beam therapy.

Purpose: To describe and analyze how women with breast cancer experience breathing adapted radiation therapy (BART) and to explore how women manage daily radiation therapy., Method: Individual interviews were conducted with 20 women treated with BART for breast cancer concerning their perception of radiation therapy. The transcribed interviews were analyzed using qualitative content analysis., Results: 'The breath of life' was the overall theme, as the women experienced the breathing as a way in which to influence their treatment and thus their survival. 'Participating in one's treatment, for good or ill', was the main category with four subcategories, 'Knowing one has done something good', 'Getting an extra bonus - healthwise', 'The experience of being in control' and 'Being in a high-technology environment'. The breathing technique became the strategy by which they could manage their treatment and gave them a sense of participation which led to a feeling of being in control. The women also felt that breathing benefited their health both mentally and physically. The high-technology environment was experienced as both hopeful and frightening., Conclusion: Survival or increasing the chances of survival, are of ultimate importance for a woman with breast cancer. BART requires commitment from the women, which was perceived as offering them an opportunity to participate in their own treatment, for their survival. Increasing the women's possibilities to participate in their treatment benefits their health and welfare during an otherwise turbulent time and allow the rehabilitation process to start during treatment., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Purpose: The purpose of this study was to observe sickness absence before and after the cancer diagnosis among cancer patients with five common forms of cancer., Methods: Using cohort data, we observed sick leave in the pre- and post-diagnostic phase among patients with colon, rectal, breast, prostate, or lung cancer (n = 2,738). We also identified reference subjects without cancer (total n = 12,246) who were individually matched for age and gender for each specific cancer cohort in order to compare sickness absence between patients with a specific form of cancer and the background population without cancer., Results: Lung cancer patients had the highest increase in sick days both pre- and post-diagnosis and prostate cancer patients had the lowest increase. Irrespective of the form of cancer, cancer patients had significantly more sick days in the post-diagnostic phase compared to their reference subjects, ranging from 5 (prostate cancer) to 12 times the amount of sick days (colon and lung cancer). One year post-diagnosis, less than half of the cancer patients were on sick leave, except for lung cancer patients where 63% were still on sick leave., Conclusion: Sick leave among cancer patients seems related not only to the cancer diagnosis and its treatment but also to the prodromal illness in the pre-diagnostic phase, especially for forms of cancer with heavier symptom burden such as colon and lung cancer. Although cancer results in substantial increase in sick leave, it is important to acknowledge that a major part of cancer patients return to work within 1 year after the cancer diagnosis.

Background: The impact of cancer on spouses of cancer patients may be considerable in many aspects. Our objective was to evaluate sick leave in spouses of cancer patients before and after the diagnosis., Material and Methods: Using Swedish population-based registries, we studied sick leave of spouses to patients with newly diagnosed colon, rectal, lung, prostate, or breast cancer. We identified the cancer patients via the Swedish Cancer Registry and obtained information of their spouse through linkage with the population register. We assessed the number of sick leave episodes and sick days one year before until one year after the spouses' cancer diagnosis by cross-referencing with Swedish Social Insurance Agency data. We also compared the number of sick days of spouses with the general population adjusted for age, sex and partner status., Results: In general, spouses (N=1 923) to cancer patients had an increase in the frequency of new episodes of sick leave in the months before and after the cancer diagnosis. Spouses of lung cancer patients had most sick leave episodes, and the largest number of sick days per person. In comparison to the general population, spouses in the lung cancer group also had the highest standardised sick day ratio 1.76; 95% confidence interval 1.24, 2.40. The corresponding risk for spouses in other groups of cancer was not significantly increased., Discussion: In Sweden there is often increased sick leave of spouses to cancer patients. It may be due to emotional stress and physical reactions that follow with cancer which needs to be further explored in order to provide adequate support and care.

Unlabelled: The aim of this study was to 1) examine the occurrence and burden of side effects over time in the period after post surgical adjuvant radiotherapy in women with breast cancer and 2) explore the women's experiences of given information and need of support to handle side effects., Material and Method: 171 women with breast cancer receiving post-surgical adjuvant radiotherapy completed a questionnaire on radiotherapy-related side effects (Treatment Toxicity Assessment Tool OTTAT) at four times between the start of radiotherapy and six months after completion. Comparisons were made between women with breast conservative surgery (group A) and women with modified mastectomy (group B), and for having chemotherapy or not (C+ and C-). Questions regarding the experience of delivered information and support were added., Results: Fatigue was the single most prevalent side effect and, together with skin reactions and pain, it also had the highest mean score over the study period and the largest score increase during treatment. The largest increase during the six months was seen for skin reaction, pain, and dyspnoea. The average score for skin reaction was significantly higher in group B than in group A. A majority of the women experienced the given information and support as satisfying and a need for follow-up of the side-effects was expressed., Conclusion: Nursing for women with breast cancer receiving adjuvant radiotherapy should focus on preventing and treating side effects, and also include the period post treatment. There is a need for developing evidence based guidelines including guidelines for follow-up., (Copyright (c) 2009 Elsevier Ltd. All rights reserved.)

Purpose: To examine health care use and health care costs among partners of persons with cancer., Patients and Methods: Partners of patients with colon, rectal, lung, breast, and prostate cancer (N = 11,076) were identified via linked data from the Tumor Registry of Southern Sweden and Census Registry of Sweden. Health care use, total costs of health care, and diagnosis of the partner were studied before and after diagnosis of the cancer patient., Results: Health care use for partners increased in terms of in-patient care after the cancer diagnosis. A significant increase was seen the second year for partners of patients with colon cancer (risk ratio [RR], 1.55; 95% CI, 1.28 to 1.87) and lung cancer (RR, 1.50; 95% CI, 1.26 to 1.79). Psychiatric diagnoses increased after the cancer diagnosis in the total sample, with a significant increase for partners of colon (RR, 2.66; 95% CI, 1.71 to 4.22), lung (RR, 3.16; 95% CI, 2.23 to 4.57), and prostate cancer patients (RR, 1.68; 95% CI, 1.32 to 2.15). Costs of care increased more than the consumer price index the two years after the cancer diagnosis. Costs of care increased most for male partners and especially for younger male partners (age 25 to 64 years) of patients with colon, rectal, and lung cancers., Conclusion: The results showed increased health care costs and an increase in psychiatric diagnoses after the cancer diagnosis among partners of cancer patients. Further research is needed to learn more about the situation of the partner and to identify persons at risk of psychiatric morbidity. Knowledge is also needed on how to support the partner in the most efficient way.

Objectives: The aims of the study were to investigate whether an elevated CA 125 level signals malignancies other than ovarian cancer and to find the cause of death for 247 women with elevated values among the 5550 women screened in 1986-1988 in the Stockholm population., Methods: The Swedish Regional Cancer Registry delivered malignancy diagnoses among the 5550 women screened. The Cause of Death Registry gave the cause of death among the women with elevated CA 125 values., Results: Patients with ovarian cancer were excluded. In 44 women with elevated CA 125 values other malignancies were reported to the Cancer Registry. They represent 18% of the entire group with elevated values. Among the 5297 women with normal CA 125 values 13% developed various malignancies. The difference between incidence of malignant disease in women with elevated values and women with normal values is significant, P = 0.02. Especially during the test-related period, from 1 year before to 1 year after the test, malignancies were detected in 6.9% of the population with elevated values and in only 1.6% with normal values (P = < 0.001). Breast cancer and lung cancer were overrepresented among women with elevated CA 125 values (P = 0.015 and < 0.001, respectively). Of the total 5500 women screened, 358 women died with different diagnoses. Elevated CA 125 values had been noted earlier in 25 women, and of these 20 died of malignant diseases, predominantly ovarian, breast, and lung cancer., Conclusions: Asymptomatic postmenopausal women with elevated CA 125 levels in ovarian carcinoma screening trials should, if ovarian cancer is excluded, be investigated for possible breast or lung cancer. The findings also suggest that elevated CA 125 level is a risk factor for death from malignant disease.

Objectives: Seventy percent of ovarian cancer is diagnosed at advanced stages. Having a method for early diagnosis is a very attractive concept. Several attempts have been made, using monoclonal antibody-based immunoassays, ultrasound, or combinations of both, to identify methods that might prove to be sufficiently sensitive and specific as a screening test. Despite promising results, a mortality study of a large population has yet to be completed due in part to the high cost involved., Methods: One of the first studies aimed at devising a screening strategy for ovarian cancer used the CA 125 immunoassay followed by ultrasound. The study was performed in Stockholm from 1986 through 1988. Ten years now having passed, an analysis has been performed to further evaluate the results of that study., Results: Screening led to the diagnosis of ovarian cancer in six patients, five of whom have since died of the disease. By searching the Cancer Registry, we were able to identify 20 ovarian cancer patients who developed the disease after the screening period. Of these, 12 died of the disease, 2 are alive with disease, and 6 have no evidence of disease following treatment. The median survival for patients diagnosed by screening was 100 months. Median survival for ovarian cancer patients identified subsequent to screening was 20 months. Although there was no difference in survival between these two groups, median survival was better for women diagnosed by screening (borderline significance, P = 0.059)., Conclusion: These results indicate that a study of a large number of women with a sufficiently long observation time will be required to establish whether or not screening can reduce ovarian cancer mortality. Such a study may also provide insight into the natural history of ovarian cancer., (Copyright 2000 Academic Press.)

Stored samples from women in the Stockholm screening study were reassayed for CA125II (Centocor, Malvern, PA) and OVX1. The postmenopausal women older than age 50 without ovarian cancer were randomly split into a training set to develop a screening test based on longitudinal marker levels and a second set to validate the test. The CA125II data from each woman is summarized by the slope and intercept from a linear regression of log(CA125II) on time since first sample. The slope versus the intercept for the training set and the ovarian cancer cases formed a bivariate scatter plot. A curve was drawn on the scatter plot that separated most of the women with ovarian cancer from all other women; it delineated a screening test. The specificity of this test was examined on the validation set with a specificity of 99.8%. Bayes' theorem was used to calculate the risk of ovarian cancer (ROC) based on the intercept, slope, and assay variability. It is important to account for assay variability because it can produce large slopes over short periods of time. The maximum risk, which identified 83% (5 of 6) of the ovarian cancers detected within a year of last assay, was applied as a test to the training set and confirmed a high specificity of 99.7%. With this specificity and sensitivity, the ROC algorithm using the CA125II assay has an estimated positive predictive value of 16%, substantially greater than the positive predictive value based on a single assay. Further study is planned to confirm the sensitivity of this approach.

Prognostic factors were studied in 770 cases of carcinoma of the ovary treated at Radiumhemmet during 1974 to 1979. Centralization of the treatment in a well-defined population with complete follow-up permits a nonselective study of the disease. The analysis was made separately for early and late stages. For the early cases, histology and grading were the most dominant prognostic factors. For the most advanced cases successful surgical treatment, either primary or secondary, showed significant relation to survival. Successful secondary surgery could be achieved in twice as many cases where radiotherapy was included in the treatment. Even for the advanced cases, the stage but not the histology was of prognostic significance. The major difficulties in evaluating treatment of ovarian cancer, especially in advanced cases, are associated with the multiplicity of sites of the disease and the prognostic factors that may contribute independently to the outcome.