Morbidity and mortality among children, adolescents, and young adults with cancer over six decades: a Swedish population-based cohort study (the Rebuc study).

Background: Despite progress in managing cancer in children, adolescents, and young adults (CAYAs), persistent complications may impact their quality of life. This study covers the morbidity and mortality, among CAYAs, with the aim to investigate the influence of socioeconomic factors on outcomes. Methods: This retrospective matched cohort study included the entire Swedish population of individuals under 25 with cancer 1958-2021. The population was identified from the Cancer Register, and controls were paired 1:5 based on age, sex, and residence. Multiple registers provided data on morbidity, mortality, and demographics. Findings: This survey covering 63 years, identified 65,173 CAYAs and matched controls, a total of 378,108 individuals (74% females). CAYAs exhibited a 3.04-times higher risk for subsequent cancer (Odds ratio (OR) 95% confidence interval (CI) 2.92-3.17, p < 0.0001), a 1.23-times higher risk for cardiovascular disease (OR 95% CI 1.20-1.26, p < 0.0001), and a 1.41-times higher risk for external affliction (OR 95% CI 1.34-1.49, p < 0.0001). CAYAs had a higher mortality hazard, and after adjusting for socioeconomic factors, males, individuals born outside Europe, and those with greater sick-leave had a higher association with mortality, while education and marriage showed a beneficial association. Interpretation: The Rebuc study, showed an increased risk for serious complications among young cancer patients in Sweden. Patient-specific variables, demographics, and socioeconomic factors influenced mortality. These results underscore the impact of cancer on the health and lifespan of young individuals and the necessity for further research to address socioeconomic disparities in cancer care. Funding: Grants from the Medical Research Council of Southeast Sweden (FORSS), ALF Grants, Region Ostergotland, and The Swedish Childhood Cancer Fund.

Planning for return to work during the first year after breast cancer metastasis: A Swedish cohort study.

BACKGROUND: Planning for return to work (RTW) is relevant among sub-groups of metastatic breast cancer (mBC) survivors. RTW and protective factors for RTW in patients with mBC were determined. METHODS: Patients with mBC, ages 18-63 years, were identified in Swedish registers, and data were collected starting 1 year before their mBC diagnosis. The prevalence of working net days (WNDs) (>90 and >180) during the year after mBC diagnosis (y1) was determined. Factors associated with RTW were assessed using regression analysis. The impact of contemporary oncological treatment of mBC on RTW and 5-year mBC-specific survival was compared between those diagnosed in 1997-2002 and 2003-2011. RESULTS: Of 490 patients, 239 (48.8%) and 189 (36.8%) had >90 and >180 WNDs, respectively, during y1. Adjusted odds ratios (AORs) of WNDs >90 or >180 during y1 were significantly higher for patients with age ≤50 years (AOR180  = 1.54), synchronous metastasis (AOR90  = 1.68, AOR180  = 1.67), metastasis within 24 months (AOR180  = 1.51), soft tissue, visceral, brain as first metastatic site (AOR90  = 1.47) and sickness absence <90 net days in the year before mBC diagnosis, suggesting limited comorbidities (AOR90  = 1.28, AOR180  = 2.00), respectively. Mean (standard deviation) WNDs were 134.9 (140.1) and 161.3 (152.4) for patients diagnosed with mBC in 1997-2002 and 2003-2011, respectively (p = 0.046). Median (standard error) mBC-specific survivals were 41.0 (2.5) and 62.0 (9.6) months for patients diagnosed with mBC in 1997-2002 and 2003-2011, respectively (p < 0.001). CONCLUSIONS: RTW of more than 180 WNDs was associated with younger age, early development of metastases and limited comorbidities during the year before the diagnosis of mBC. Patients diagnosed with mBC in 2003 or later had more WNDs and better survival than those diagnosed earlier.

Side Effects and Its Management in Adjuvant Endocrine Therapy for Breast Cancer: A Matter of Communication and Counseling.

Objective: Women with a newly diagnosed hormone receptor-positive breast cancer are offered adjuvant endocrine therapy (AET). Although the treatment reduces the risk of relapse and death not all women are adherent to it. Many factors, including the therapy's menopausal side effects, can adversely affect adherence to the treatment. This study explores the extent to which women treated with AET perceived that health care providers addressed their side effects. Methods: Ten focus groups were set up, containing between four to nine women. In total, 58 women participated in the study-45 from the Stockholm metropolitan region and 13 from the scarcely populated Norrbotten region. The interviews were analyzed using qualitative content analysis with an inductive approach. Results: The women were usually satisfied with the care they received from the health care providers. However, their experiences were more complex when it came to their satisfaction with the care in terms of the menopausal side effects of therapy, sexuality in particular. The participants reported that their healthcare providers rarely asked about sex life-related side effects of the treatment. Conclusions: Health care providers need to communicate and consult about issues related to their patients' sex lives following their breast cancer diagnosis and during their treatment.

Use of sickness benefits by patients with metastatic breast cancer-A Swedish cohort study.

OBJECTIVE: The objective of this study is to determine the prevalence and predictors of sickness absence (SA) and disability pension (DP) in women with metastatic breast cancer (mBC). METHODS: Data were obtained from Swedish registers concerning 1,240 adult women diagnosed 1997-2011 with mBC, from 1 year before (y-1) to 2 (y1) and 2 (y2) years after diagnosis. SA and DP prevalence was calculated. Odds ratios (AOR) were determined for factors associated with using long-term (SA > 180 days or DP > 0 days) sickness benefits. RESULTS: Prevalence of SA and DP was 56.0% and 24.8% during y-1, 69.9% and 28.9% during y1, and 64.0% and 34.7% during y2, respectively. Odds of using long-term sickness benefits were higher y1 and y2 in patients using long-term sickness benefits the year before diagnosis (AOR = 3.82, 95% CI 2.91-5.02; AOR = 4.31, 95% CI 2.96-6.29, respectively) and y2 in patients with mBC diagnosis 1997-2000 (AOR = 1.84, 95% CI 1.10-3.08) and using long-term sickness benefits the year after diagnosis (AOR = 22.10, 95% CI 14.33-34.22). CONCLUSIONS: The prevalence of sickness benefit utilisation was high and increased after mBC diagnosis, particularly for patients using long-term sickness benefits prior to diagnosis. Additional study is needed to determine factors that might reduce the need for sickness benefits and enhance work ability in these patients.

Sickness absence and disability pension among swedish women prior to breast cancer relapse with a special focus on the roles of treatment and comorbidity.

OBJECTIVE: We aimed to determine the longitudinal prevalence and the predictors of sickness absence (SA) and disability pension (DP) in breast cancer (BC) women who eventually developed relapse. METHODS: A total of 1293 BC women, who were ages 20-63 years, diagnosed between 1996 and 2011 and by 2016 had all developed relapse, were identified in Swedish registers and were followed from two years before to five years after their primary diagnosis, while they were relapse-free. Annual prevalence of SA and DP was calculated. Logistic regression was used to estimate adjusted odds ratios (AOR) for long-term SA (>30 days) at one (y1) and three (y3) years post-diagnosis. RESULTS: Prevalence of long-term SA was 68.1% in y1 and 16.3% in y5. Prevalence of DP progressively increased from 16.3% in y1 to 29.0% in y5. Predictors of long-term SA included age <50 years (y1:AOR = 1.79 [1.39-2.29]), TNM stage III (y1:AOR = 1.54 [1.03-2.31]; y3:AOR = 2.21 [1.32-3.72]), metastasis (y1:AOR = 1.64 [1.26-2.12]; y3:AOR = 1.51 [1.05-2.18]), comorbidity (y1:AOR = 2.41 [1.55-3.76]; y3 AOR = 4.62 [2.49-8.57]) and any combination of radiotherapy, chemotherapy and hormonal therapy (y1:AOR = 2.05-5.71). CONCLUSION: Among BC women who later developed relapse, those who had higher stages of BC, had comorbidity and received neoadjuvant and/or adjuvant therapy were at significantly higher risk of needing long-term SA after their diagnosis.

Quality of Life Improvements in Patients with Lymphedema After Surgical or Nonsurgical Interventions with 1-Year Follow-Up.

Background: Lymphedema may impact patients' health-related quality of life (HRQoL). The purpose of this study was to evaluate HRQoL after two different treatments to the 12-month follow-up point. Methods and Results: Study participants were patients with moderate lymphedema in the upper or lower limb who attended a Swedish rehabilitation program (RP) undergoing conservative treatment, or those with severe, chronic lymphedema dominated by excess adipose tissue, who underwent liposuction (LS) combined with controlled compression therapy (CCT) in Australia, Scotland, or Sweden. The patients completed the Lymphedema Quality of Life Inventory (LyQLI) before intervention and after 1, 3, 6, and 12 months. Mean values and standard deviations were calculated for total limb volume and excess limb volume. Mean values were also calculated for the three LyQLI domains (physical, psychosocial, and practical). To detect and analyze differences in LyQLI responses in the three domains, the Wilcoxon signed rank test was performed. In the RP, 18 eligible patients completed the LyQLI. The results show improvements in HRQoL in physical (p = 0.003) and psychosocial domains (p = 0.002) at 1 month after the RP, with results remaining steady for 12 months for the physical domain (p = 0.024). Fifty-seven eligible LS patients completed the LyQLI. The results show improvements in HRQoL in all three domains (p < 0.001), with results remaining steady up to the 12-month follow-up (p < 0.001). The total volume in affected limb and the excess volume decreased significantly in both patient groups 1 month after intervention (p < 0.001). Conclusions: Treatment with a conservative RP in moderate lymphedema or with LS combined with CCT in severe lymphedema improves HRQoL.

Test of Responsiveness and Sensitivity of the Questionnaire "Lymphedema Quality of Life Inventory".

BACKGROUND: Lymphedema may affect patients' health-related quality of life (HRQoL) and thus a disease-specific questionnaire is needed. The Lymphedema Quality of life Inventory (LyQLI) has been tested for reliability and validity. The purpose of this study was to test the LyQLI for responsiveness and sensitivity. METHODS AND RESULTS: The study participants were patients with lymphedema in the upper or lower limb, attending a Swedish rehabilitation program (RP) and undergoing conservative treatment without surgery (RP-sample), or undergoing liposuction (LS) in Australia, Scotland, and Sweden (LS-sample). Mean values for the three LyQLI domains (physical, psychosocial, and practical) were calculated before and 1 month after intervention, and the paired t-test was used to detect group differences. Responsiveness was calculated using standardized response mean (SRM), and sensitivity was analyzed with box plots and an independent t-test to detect group differences. Eighteen patients in the RP-sample and 50 in the LS-sample were studied, and both samples demonstrated increased HRQoL after intervention. The changes were significant in all domains, except for the practical domain in the RP-sample. The SRM for the three LyQLI domains (physical, psychosocial, and practical) were 0.8, 0.8, and 0.4, respectively, in the RP-sample and 0.7, 1.2, and 0.9 in the LS-sample. Statistical testing indicated that the LyQLI was sensitive enough to reveal differences between patient groups. CONCLUSIONS: LyQLI responsiveness and sensitivity indicated that the tool can be used to evaluate patients undergoing conservative or surgical lymphedema treatments.

Health-related quality of life in patients with lymphoedema - a cross-sectional study.

INTRODUCTION: Lymphoedema may cause complex problems that can strongly influence patients' health-related quality of life (HRQoL). The main purpose of this study was to investigate the impact of lymphoedema on HRQoL in patients with varying forms of lymphoedema. METHODS: The Lymphoedema Quality of Life Inventory (LyQLI), measuring three domains, physical, psychosocial and practical, and the Short Form 36 Health Survey Questionnaire (SF-36), measuring eight health domains, were sent to 200 lymphoedema patients. Out of those who answered both questionnaires, 88 patients had lymphoedema secondary to cancer treatment and they additionally received the Functional Assessment of Cancer Therapy Scale-General (FACT-G). The relation between continuous variables and the three domains were analysed by Spearman's correlation coefficients, and Kruskal-Wallis test was used to analyse categorical variables. RESULTS: Altogether 129 patients completed the LyQLI and SF-36 and 79 of them also completed FACT-G. Twenty per cent had a high mean score (≥2.0) in at least one domain of the LyQLI, thus having a low HRQoL. Lower HRQoL was found in the practical domain of LyQLI in patients with lower limb lymphoedema compared to patient with lymphoedema in upper limb or head/neck (p = 0.002) and in patients working part-time compared to patients working full-time (p = 0.005). The impact on HRQoL tended to decrease with age, with a significant correlation in the psychosocial domain (rs = 0.194, p = 0.028). Compared with the general Swedish population, patients with lymphoedema scored significantly lower in general health (p = 0.006), vitality (p = 0.002) and social functioning (p = 0.025) assessed by the SF-36. From a cancer-specific view, HRQoL was similar to other Swedish studies using the FACT-G. CONCLUSIONS: This study indicates that about 20% of the patients with lymphoedema had major impact on their HRQoL. More effort and research is needed to identify, understand and support groups of patients with severe lymphoedema-related problems.

Lymphedema Quality of Life Inventory (LyQLI)-Development and investigation of validity and reliability.

PURPOSE: The purpose of this study was to reduce the 188-item Swedish Lymphedema Quality of Life Inventory (SLQOLI) to an abbreviated, clinically useful version (phase 1) and to test it for reliability and validity (phase 2). METHODS: In phase 1 correlation analysis, factor analysis, content validity assessment and expert panels were used to reduce the number of items in SLQOLI to 45 items, which was named, Lymphedema Quality of Life Inventory (LyQLI). In phase 2, LyQLI was sent to 200 patients with lymphedema. 126 patients completed the questionnaire twice to determine stability of the instrument over time. SF-36 was sent to the patients once, correlations between the three domains in LyQLI and the two sum scores Physical Health (PCS) and Mental Health (MCS) in SF-36 were used to assess concurrent validity. RESULTS: The 188-item SLQOLI was reduced to 45-item LyQLI. Four domains were reduced to three: physical, psychosocial and practical. Reliability estimates using ICC for the physical and psychosocial domains were 0.88 (p < 0.01) and 0.87 (p < 0.01), for the practical domain 0.87 (p < 0.01). Cronbach's alpha coefficients for the three domains were 0.88, 0.92 and 0.88, respectively. The physical domain correlated highly significantly with PCS, psychosocial highly significantly with MCS and practical equally highly significantly to both PCS and MCS. Using skewness coefficients, small floor effects in the items were found. CONCLUSION: The shorter LyQLI demonstrated good reliability and validity with potential use to assess quality of life in clinic settings and in further cross-sectional studies of patients with lymphedema.

Cognitive, psychosocial, somatic and treatment factors predicting return to work after breast cancer treatment.

BACKGROUND: Breast cancer (BC) may affect the ability to work. In this study, we want to identify any associations between cognitive, psychosocial, somatic and treatment factors with time to return to work (RTW) among women treated for BC. METHODS AND PARTICIPANTS: At eight (baseline) and 11(follow-up) months after BC diagnosis, women who had received adjuvant treatment for early BC at Stockholm South General Hospital completed the Headminder neuropsychological tests to obtain the Cognitive Stability Index (CSI), the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire and its Breast Cancer Module. At both time points, we compared the scores from women who had returned to work with those who had not. We also reviewed the medical certificates of women still on sick leave at 8, 11 and 18 months after diagnosis to determine why they had not returned to work. RESULTS: At baseline, 29 of 45 enroled women were working and 15 were not (one dropped out after baseline testing). The 14 women still not working 11 months after BC diagnosis had more advanced BC (OR = 3.64, 95% CI 2.01-7.31), lymph-node involvement (OR = 18.80, 95% CI 5.32-90.69) and Her 2-positive tumours (OR = 10.42,95% CI 2.19-65.32) than did working women. None of the scores for the four cognitive domains changed significantly at follow-up in either group. Comments on the medical certificates generally supported these findings. Independently of any adjuvant cancer therapy, overall quality of life improved and most women did RTW 18 months after BC diagnosis. CONCLUSIONS: Chemotherapy is associated with longer periods of sick leave. Cognitive functions do not predict RTW. Independently of any adjuvant therapy, most women eventually RTW in a few months. The ability to predict RTW after BC treatment should help prepare higher-risk patients for delayed RTW and allow earlier interventions to restore their social relations and quality of life.

Work status and life changes in the first year after breast cancer diagnosis.

OBJECTIVE: The aims of this study were to generate new knowledge about factors predicting return to work (RTW) among women treated for early-stage breast cancer, and about changes in life satisfaction, and coping, and to examine the association between these concepts and RTW. METHODS AND PARTICIPANTS: A cohort of 102 women aged 18-64 were assessed six weeks, six months, and ten months after surgery using data from questionnaires and medical files. RESULTS: Factors independently predicting no RTW at six months were: chemotherapy, > 30 days of sick leave during the previous 12 months, low satisfaction with activities of daily living, and not having been born in Sweden. No RTW at ten months was predicted by irradiation to breast/chest wall and regional nodes, and low satisfaction with vocational situation. Global life satisfaction was higher among the working women, both six months after surgery and ten months after surgery. The working women used more positive coping resources as compared to the sick-listed women, particularly sick-listed women treated with chemotherapy. CONCLUSION: Factors associated with RTW appear to include not only treatment-related factors such as chemotherapy and irradiation, but also psychosocial factors such as life satisfaction and coping resources. With increased understanding of the complex factors related to RTW after a breast cancer diagnosis, it will be possible to identify and support survivors who are at risk of being marginalized from the labor market.

Improvements in physical and mental health following a rehabilitation programme for breast cancer patients.

PURPOSE: To investigate how breast cancer patients referred to in-patient rehabilitation at Mösseberg Rehabilitation Centre (MRC) in Sweden perceive their life situation, and if their life satisfaction and mental health have changed three months later. METHOD: This prospective study is based on 46 women, all of them in working age. Three validated questionnaires were used, the Life Satisfaction (Li-Sat 11) scale, the Maastricht Questionnaire and the Shirom-Melamed Burnout Questionnaire (SMBQ). RESULTS: Statistically significant improvements for the variables physical and mental health were seen in the measurements made using the Li-Sat 11 scale. The SMBQ survey showed a statistically significant improvement in the composite results for the indices involved. Likewise, the Maastricht Questionnaire showed statistically significant improvements in health status with respect to feelings of exhaustion and fatigue. CONCLUSION: More effective treatments have resulted in an increase in the number of breast cancer survivors and in the demand for rehabilitation. This study shows improvements in health and satisfaction with health, but cannot conclude this result as only an effect of the rehabilitation programme. Since only a few studies have until now shed light on the benefits of in-patient rehabilitation following a breast cancer diagnosis, there is an urgent need for continued research in this area.

Predictors of return to work ten months after primary breast cancer surgery.

BACKGROUND: The most common female cancer in Western countries is breast cancer and women diagnosed with this disease are often under 65 years old. With increasing prevalence of survivors it is important to shed light on problems facing these women after diagnosis and treatment. The aim of this study was to assess factors predicting return to work (RTW) in women with early-stage breast cancer. MATERIAL AND METHODS: A cohort of 102 women aged 18-64 with early-stage breast cancer who had undergone curative primary surgery with or without systemic adjuvant therapy were followed for 10 months using data from questionnaires and medical files. RESULTS: Ten months after primary surgery, 59% of the women had returned to work while 41% were sick-listed part-time or full-time. After adjusting for age, health status, life satisfaction, vocational situation, and irradiation to the breast/chest wall and regional nodes, a multivariate logistic regression revealed the following factors as being negatively associated with RTW: a high-demand job (OR=0.1, 95% CI 0.0-0.8), axillary node dissection (OR=0.1, 95% CI 0.0-0.6), and treatment with chemotherapy (OR=0.1, 95% CI 0.0-0.7). DISCUSSION: Treatment factors and high demands at work play an important role in RTW for women with early-stage breast cancer.

Factors associated with return to work after breast cancer treatment.

Relatively few studies have addressed problems regarding return to work after primary treatment for early-stage breast cancer. The purpose of this study was to investigate whether socio-economic and treatment-related factors were associated with problems of returning to work among pre-menopausal women included in a randomized trial of adjuvant endocrine therapy. The duration of all endocrine treatments in the trial was two years. At 24 months after randomization 35 of the 222 recurrence-free patients (16%) had not returned to work. The use of adjuvant endocrine therapy was associated with a twofold increase in the odds ratio of not having returned to work, although the confidence interval of this ratio was wide and included unity. Tumour stage was negatively associated with work status, possibly because of its association with adjuvant chemotherapy and radiotherapy to the regional nodes. Age and investigated social factors (educational level, matrimonial status and presence of under-age children) were not significantly associated with return to work. Determining the significance of other social factors such as vocational motivation, level of income and vocational rehabilitation merits further research.