Burden of late effects in a nationwide sample of long-term breast cancer survivors.

BACKGROUND: Long-term breast cancer survivors (BCSs) may experience several late effects (LEs) simultaneously. This study aimed to identify subgroups of 8-year BCSs with higher burden of LEs who could benefit from closer survivorship care, explore variables associated with higher symptom burden, and describe how symptom burden may affect general functioning. METHODS: All Norwegian women aged 20 to 65 years when diagnosed with stage I-III breast cancer in 2011 and 2012 were invited (n = 2803). The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire/BR23, the Fatigue Questionnaire, Assessment of Survivor Concerns, and Scale for Chemotherapy Induced Long-term Neurotoxicity were used to assess 10 common LEs and general functioning. Using latent class analysis, subgroups of BCSs with similar burden of LEs were identified. Multinominal regression analysis were performed to examine variables associated with higher symptom burden. RESULTS: The final sample consisted of 1353 BCSs; 46% had low, 37% medium, and 17% high symptom burden. Younger age, short education, axillary dissection, higher systemic treatment burden, higher body mass index, and physical inactivity were associated with higher symptom burden. General functioning scores were lower, and the proportion on disability pension were higher among BCSs in the two most burdened subgroups compared with those in the low burden subgroup. CONCLUSION: More than half of long-term BCSs suffered from medium or high symptom burden and experienced impaired general functioning compared with BCS with low symptom burden. Younger age and systemic treatment were important risk factors for higher symptom burden. BCSs at risk of higher symptom burdens should be identified and offered closer and extended survivorship care.

High neuroticism is associated with common late adverse effects in a nationwide sample of long-term breast cancer survivors.

PURPOSE: Neuroticism is a basic personality trait characterized by negative emotions triggered by stress such as a breast cancer diagnosis and its treatment. Due to lack of relevant research, the purpose of this study was to examine if high neuroticism is associated with seven common late adverse effects (LAEs) in long-term (≥ 5 years) breast cancer survivors (BCSs). METHODS: All female Norwegian BCSs aged 20-65 years when diagnosed with stage I-III breast cancer in 2011 or 2012 were invited to a questionnaire study in 2019 (N = 2803), of whom 48% participated (N = 1355). Neuroticism was self-rated using the abridged version of the Eysenck Personality Questionnaire, and scores dichotomized into high and low neuroticism. LAEs were defined by categorization of ratings on the EORTC QLQ-C30 (cognitive function, pain, and sleep problems) and QLQ-BR23 (arm problems) questionnaires, and categorizations of scale scores on mental distress, fatigue, and neuropathy. Associations between high neuroticism and LAEs were explored using multivariate logistic regression analyses. RESULTS: High neuroticism was found in 40% (95%CI 37-42%) of BCSs. All LAEs were significantly more common among BCSs with high compared to low neuroticism. In multivariable analyses, high neuroticism was positively associated with all LAEs except neuropathy. Systemic treatment, somatic comorbidity, and not being in paid work were also significantly associated with all LAEs. CONCLUSIONS: High neuroticism is prevalent and associated with increased risks of LAEs among BCSs. Identification of high neuroticism could improve the follow-up care of BCSs as effective interventions for the condition exist.

Fear of cancer recurrence eight years after early-stage breast cancer - results from a national survey.

BACKGROUND: Fear of cancer recurrence (FCR) in breast cancer survivors (BCSs) is common, associated with reduced quality of life and effective interventions exist. There are knowledge gaps concerning FCR among long-term, early-stage BCSs and its associations with other late effects. Within a national cohort, we explored these knowledge gaps, with the ultimate aim of improved care for BCSs experiencing long-term FCR. METHODS: In this cross-sectional study, all BCSs aged 20-65 years with early-stage breast cancer in 2011-2012 (n = 2803), were identified by the Cancer Registry of Norway in 2019 and mailed a survey including the Assessment of Survivor Concerns used to measure FCR. Factors associated with moderate/high FCR (defined as a sum score of ≥ 6 of a possible range 3-12, or a single score on one of the items of ≥ 3) were explored using a three-block regression analyses including relevant sociodemographic-, health- and cancer-related variables. RESULTS: In total, 1311 BCSs were included (47%). Median age at survey was 60 years. Fifty-six % reported moderate-to-high FCR, associated with younger age (OR 0.96, 95% CI 0.95-0.97) and receiving chemo- and endocrine therapy (OR 1.59, 95% CI 1.15-2.20). After adding late effects into the model, FCR remained significantly associated with these variables, in addition to sleep disturbances (OR 1.58, 95% CI 1.18-2.10). In the final block, adding mental distress, FCR remained significantly associated with younger age (OR 0.97, 95% CI 0.96-0.99), receiving chemo- and endocrine therapy (OR 1.14, 95% CI 1.00-1.97), sleep disturbances (OR 1.44, 95% CI 1.08-1.94) and anxiety (OR 2.67, 95% CI 1.38-5.19). CONCLUSIONS: FCR was prevalent eight years after early-stage breast cancer. Being younger, receiving intensive treatment, experiencing sleep disturbances and/or anxiety were associated with moderate/high FCR. Addressing FCR should be part of standard follow-up care of long-term BCSs.

Health literacy among long-term survivors of breast cancer; exploring associated factors in a nationwide sample.

BACKGROUND: Poor health literacy may hamper health management and long-term outcomes in breast cancer survivorship. Knowledge of factors associated with poor health literacy is needed to identify survivors in need of additional support and to improve the quality of health care, but is currently scant. Here, we explore health literacy and associated factors in a nationwide sample of long-term survivors of breast cancer. MATERIAL AND METHODS: All survivors aged 20-65 years when diagnosed with stage I-III breast cancer in 2011 or 2012 were identified through the Norwegian Cancer Registry, and invited to participate in the Survivorship, Work and Sexual Health (SWEET) study. Health literacy was measured using The European Health Literacy Survey Questionnaire-12 (HLS-EU-Q12) and analyzed as a continuous and categorical variable. Associations between health literacy and socioeconomic, physical, and mental health variables, including the most common late effects after cancer treatment, were explored in uni- and multivariable linear regression models. RESULTS: The final sample consisted of 1355 survivors (48%) with a mean age of 60 years at survey (SD 8.7). Eight years had passed since diagnosis (SD.0.7), and the majority of survivors had high socioeconomic status. Advanced judgment calls concerning treatment and health risks were reported to be the most difficult for survivors to handle. Mean health literacy sum score was 36.2 (range 12-48, SD 5.4). Thirty-nine percent had intermediate, while 19.3% reported marginal or inadequate health literacy. Education, income, age at diagnosis, the personality trait neuroticism, and fear of cancer recurrence were significantly associated with health literacy in the multivariate model, explaining 12% of the variance in health literacy scores. CONCLUSION: Low levels of health literacy were prevalent in this population-based sample of long-term survivors of breast cancer, despite high socioeconomic status. Communicating and interpreting risks seem to be especially challenging. Attention to health literacy at a societal and individual level is necessary in order to provide survivorship care of high quality.

Work status changes and associated factors in a nationwide sample of Norwegian long-term breast cancer survivors.

PURPOSE: The study aims to describe work status at diagnosis and 8 years post-diagnosis in a nationwide sample of breast cancer survivors (BCSs), and investigate associated and self-reported factors of reduced work status. METHODS: Women aged 20-65 years when diagnosed with stage I-III breast cancer (BC) in 2011 or 2012 were invited to participate in a questionnaire study in 2019 (n = 2803), of whom 49% (n = 1361) responded. For this sub-study, we included 974 BCSs below the legal retirement age in Norway (< 67 years) at survey and with complete work status data. Reduced work status was defined as being in paid work at BC diagnosis and not working at time of survey. Logistic regression analyses were applied to identify factors associated with reduced work status. RESULTS: Of BCSs who were in paid work at diagnosis (n = 845), 63% maintained their work status to 8 years later. Reduced work status was associated with not living with children (OR .44, 95% CI .24-.82), age (OR 1.16, 95% CI 1.11-1.21), chemotherapy (OR 2.83, 95% CI 1.24-6.61), > 2 comorbid conditions (OR 2.27, 95% CI 1.16-4.32), cognitive function (OR .99, 95% CI .98-.99), fatigue (OR 1.02, 95% CI 1.01-1.03), and neuroticism (OR 1.57, 95% CI 1.00-2.46). BC and late effects were reported as reasons for reduced work status and disability. CONCLUSIONS: The majority of BCSs who were in paid work at diagnosis were working 8 years later. IMPLICATIONS FOR CANCER SURVIVORS: Our results suggest a need to focus on fatigue and reduced cognitive function among long-term BCSs, with the ultimate aim of improving work sustainability.

Sexual activity and functioning in long-term breast cancer survivors; exploring associated factors in a nationwide survey.

PURPOSE: Sexual health is a key quality of life issue. Knowledge concerning sexual health in long-term breast cancer survivors (BCSs) is limited. Within a nationwide sample, we aimed to assess the prevalence of sexual inactivity and to explore factors associated with sexual inactivity and reduced sexual functioning among long-term BCSs. METHODS: Long-term BCSs aged 20-65 years when diagnosed with early-stage breast cancer in 2011-2012 were identified by the Cancer Registry of Norway in 2019 (n = 2803) and invited to participate in a nationwide survey. Sexual health was measured using the multidimensional Sexual Activity Questionnaire. Factors associated with sexual inactivity and reduced sexual functioning were explored using multivariable logistic- and linear regression analyses with adjustments for relevant sociodemographic, health-, and cancer-related variables. RESULTS: The final sample consisted of 1307 BCSs with a mean age of 52 years at diagnosis. Fifty-two percent of the BCSs were sexually inactive. Lack of interest was the most common reason for sexual inactivity. Treatment with aromatase inhibitor (OR 1.73, 95% CI 1.23, 2.43) and poor body image (OR 0.99, 95% CI 0.99, 0.995) were associated with sexual inactivity. Among sexually active BCSs, depression (B - 1.04, 95% CI - 2.10, - 0.02) and physical inactivity (B - 0.61, 95% CI - 1.21, - 0.02) were inversely related to sexual pleasure. Treatment with aromatase inhibitor (B 0.61, 95% CI 0.20, 1.01), sleep problems (B 0.37, 95% CI 0.04, 0.70), breast symptoms (B 0.01, 95% CI 0.003, 0.02), and chronic fatigue (B 0.43, 95% CI 0.05, 0.81) were associated with sexual discomfort. Chemotherapy (OR 1.91, 95% CI 1.23, 2.97), current endocrine treatment (OR 1.98, 95% CI 1.21, 3.25), and poor body image (OR 0.98, 95% CI 0.98, 0.99) were associated with less sexual activity at present compared to before breast cancer. CONCLUSION: Treatment with aromatase inhibitor seems to affect sexual health even beyond discontinuation. Several common late effects were associated with sexual inactivity and reduced sexual functioning. To identify BCSs at risk of sexual dysfunction, special attention should be paid to patients treated with aromatase inhibitor or suffering from these late effects.

Needs for information about lifestyle and rehabilitation in long-term young adult cancer survivors.

BACKGROUND: Healthy lifestyle and rehabilitation may mitigate late effects after cancer treatment, but knowledge about lifestyle and rehabilitation information needs among long-term young adult cancer survivors (YACSs) (≥ 5 years from diagnosis) is limited. The present study aimed to examine such information needs among long-term YACSs, and identify characteristics of those with needs. MATERIAL AND METHODS: The Cancer Registry of Norway identified long-term YACSs diagnosed with breast cancer, colorectal cancer, non-Hodgkin lymphoma, leukemia, or malignant melanoma at the age of 19-39 years, between 1985 and 2009. Survivors were mailed a questionnaire, in which respondents reported their information needs on physical activity, diet, and rehabilitation services 5-30 years post-diagnosis. Descriptive statistics and logistic regression analyses were used to examine the prevalence of information needs and associated factors. RESULTS: Of 1488 respondents (a response rate of 42%), 947 were included. Median age at diagnosis was 35 years (range 19-39) and median observation time since diagnosis was 14 years (range 5-30). In total, 41% reported information needs for information about physical activity, 45% about diet, and 47% about rehabilitation services. Information needs were associated with higher treatment intensity, increasing number of late effects, and an unhealthy lifestyle. CONCLUSION: A large proportion of long-term YACSs report information needs regarding lifestyle and/or rehabilitation more than a decade beyond treatment. Assessments of such information needs should become a part of long-term care of these cancer survivors.

Lifestyle among long-term survivors of cancers in young adulthood.

PURPOSE: To investigate lifestyle in a population-based sample of long-term (≥ 5 years since diagnosis) young adult cancer survivors (YACSs), and explore factors associated with not meeting the lifestyle guidelines for physical activity (PA), body mass index (BMI), and smoking. METHODS: YACSs (n = 3558) diagnosed with breast cancer (BC), colorectal cancer (CRC), non-Hodgkin lymphoma (NHL), acute lymphoblastic leukemia (ALL), or localized malignant melanoma (MM) between the ages of 19 and 39 years and treated between 1985 and 2009 were invited to complete a mailed questionnaire. Survivors of localized MM treated with limited skin surgery served as a reference group for treatment burden. RESULTS: In total, 1488 YACSs responded (42%), and 1056 YACSs were evaluable and included in the present study (74% females, average age at survey 49 years, average 15 years since diagnosis). Forty-four percent did not meet PA guidelines, 50% reported BMI ≥ 25 and 20% smoked, with no statistically significant differences across diagnostic groups. Male gender, education ≤ 13 years, comorbidity, lymphedema, pain, chronic fatigue, and depressive symptoms were associated with not meeting single and/or an increasing number of lifestyle guidelines. CONCLUSION: A large proportion of long-term YACSs do not meet the lifestyle guidelines for PA, BMI, and/or smoking. Non-adherence to guidelines is associated with several late effects and/or comorbidities that should be considered when designing lifestyle interventions for YACSs.

Chronic fatigue and associated factors among long-term survivors of cancers in young adulthood.

Background: Chronic fatigue (CF) is scarcely explored among young adult cancer survivors (YACSs), and more knowledge is needed to develop targeted interventions for YACSs with CF. The present study aimed to investigate the prevalence of CF and associated factors in YACSs. Also, the change of fatigue with time was explored. Material and methods: The present cross-sectional study is part of a nation-wide population based survey of Norwegian survivors of cancer in childhood, adolescence, and young adulthood (The NOR-CAYACS study).YACSs diagnosed at the age of 19-39 years with breast cancer stage ≤ III (BC), colorectal cancer (CRC), non-Hodgkin lymphoma (NHL), acute lymphoblastic leukemia, or non-metastatic malignant melanoma (MM) were included 5-30 years after diagnosis. Survivors of MM treated with limited surgery were included as a reference group. CF was assessed by the Fatigue Questionnaire. Logistic regression analyses were performed to identify factors associated with CF. Results: In total, 1488 survivors completed the questionnaire (a response rate of 42%), of which 1088 were eligible for the present study. Overall, 25% reported CF. CF was significantly more prevalent among survivors of BC (29%) (p < .001), CRC (29%) (p = .001) and NHL (27%) (p = .003) than among survivors of MM (15%). CF was associated with systemic treatment combined with surgery and/or radiotherapy (p = .018), comorbidity (p = .038), pain (p = .002), numbness in hands/feet (p = .046), and depressive symptoms (p < .001) in the multivariable model. Among survivors with CF, 60% reported that they had been tired since cancer treatment, and among these, 65% reported worsening or no change of fatigue with time. Conclusion: One of four YACSs reported CF 15 years from diagnosis (mean). CF was associated with several possibly treatable factors. Health professionals involved in the follow-up of YACSs should have knowledge of CF and approaches to manage it.

Physical activity and associations with treatment-induced adverse effects among prostate cancer patients.

PURPOSE: The present study aimed to determine the level of physical activity (PA) among prostate cancer (PCa) patients across treatment modalities and explore the association between PA and treatment-induced adverse effects (AEs). METHODS: The present study was based on a cross-sectional postal survey among members of the Norwegian Prostate Cancer Association. Patients were eligible for the present study if they had either (1) completed radical prostatectomy, (2) completed radiotherapy and (neo)-adjuvant androgen deprivation therapy (ADT), or (3) were undergoing lifelong ADT. Adverse effects were measured by the Expanded Prostate Cancer Index Composite for Clinical Practice. RESULTS: In total, 696 patients were included. There was no statistically significant difference in level of PA across treatment modalities. Bowel symptoms mainly related to radiotherapy decreased the odds of exercising ≥ 2 times per week, along with age ≥ 70 years, participation in the workforce, and BMI ≥ 25 kg/m2. Among patients who were undergoing ADT, 5 years or more since diagnosis reduced the odds of exercising ≥ 2 times per week by almost 60%. CONCLUSION: The level of PA did not differ across PCa patients treated with different modalities. Increasing bowel symptoms reduced the likelihood of exercising ≥ 2 times per week. PCa patients should be educated about possible treatment-induced AEs affecting PA level, enabling them to counteract the development of physical inactivity.