Preferences for follow up in long-term survivors after cervical cancer

Introduction An increasing number of cervical cancer survivors combined with lack of data on the efficacy of long-term surveillance, challenges existing follow-up models. However, before introducing new follow-up models, cervical cancer survivors’ own views on follow up are important. We aimed to explore preferences for follow up in long-term cervical cancer survivors and their associations with self-reported late-effects. Material and methods In 2013, we mailed 974 Norwegian long-term cervical cancer survivors treated during 2000-2007 a questionnaire with items covering preferences for follow up after treatment, clinical variables and validated questionnaires covering anxiety, neuroticism and depression. Results We included 471 cervical cancer survivors (response rate 57%) with a median follow up of 11 years. In all, 77% had FIGO stage I disease, and 35% were attending a follow-up program at the time of survey. Of the patients, 55% preferred more than 5 years of follow up. This was also preferred by 57% of cervical cancer survivors who were treated with conization only. In multivariable analyses, chemo-radiotherapy or surgery with radiation and/or chemotherapy (heavy treatment) and younger age were significantly associated with a preference for more than 5 years’ follow up. Late effects were reported by more than 70% of the cervical cancer survivors who had undergone heavy treatment. Conclusions Our study reveals the need for targeted patient education about the benefits and limitations of follow up. To meet increasing costs of cancer care, individualized follow-up procedures adjusted to risk of recurrence and late-effects in cervical cancer survivors are warranted.publishedVersio

Association of physical activity with overall mortality among long-term testicular cancer survivors: A longitudinal study

Physical activity (PA) has been associated with reduced mortality among cancer survivors, but no study has focused on testicular cancer survivors (TCSs). We aimed to investigate the association of PA measured twice during survivorship with overall mortality in TCSs. TCSs treated during 1980 to 1994 participated in a nationwide longitudinal survey between 1998 to 2002 (S1: n = 1392) and 2007 to 2009 (S2: n = 1011). PA was self-reported by asking for the average hours per week of leisure-time PA in the past year. Responses were converted into metabolic equivalent task hours/week (MET-h/wk) and participants were categorized into: Inactives (0 MET-h/wk), Low-Actives (2-6 MET-h/wk), Actives (10-18 MET-h/wk) and High-Actives (20-48 MET-h/wk). Mortality from S1 and S2, respectively, was analyzed using the Kaplan-Meier estimator and Cox proportional hazards models until the End of Study (December 31, 2020). Mean age at S1 was 45 years (SD 10.2). Nineteen percent (n = 268) of TCSs died between S1 and EoS, with 138 dying after S2. Compared to Inactives at S1, the mortality risk among Actives was 51% lower (HR 0.49, 95% CI: 0.29-0.84) with no further mortality reduction among High-Actives. At S2, the mortality risk was at least 60% lower among the Actives, High-Actives and even the Low-Actives compared to the Inactives. Persistent Actives (≥10 MET-h/wk at S1 and S2) had a 51% lower mortality risk compared to Persistent Inactives (<10 MET-h/wk at S1 and S2; HR 0.49, 95% CI: 0.30-0.82). During long-term survivorship after TC treatment, regular and maintained PA were associated with an overall mortality risk reduction of at least 50%

Most common health problems in general practice among adolescents, and young adults’ survivors of lymphoma: a register-based cohort study in Norway

Background - The aim was to investigate the distribution of health problems in general practice (GP) among adolescent and young adult (AYA) survivors of lymphoma and to compare problem rates with the general population. Methods - All GP consultations between 2006 and 2020 were identified from the national GP claims register. Diseases and complaints presented 3–10 years after the cancer diagnosis were identified using the International Classification of Primary Care codes (ICPC-2) and compared by applying logistic regression models, presented with odds ratio (OR) and 95%CI. Results - A total of 2,500,557 AYAs, of whom 1105 were diagnosed with lymphoma, and over 50 million GP consultations were included. The most common causes of consultation among AYA survivors of lymphoma were related to Hodgkin’s disease (13%), pregnancy (11%), respiratory diseases (9%), psychological problems (8%), musculoskeletal system (6%) and fatigue (4%). Almost all these problems were significantly higher among AYA lymphoma survivors compared to the general population (OR ranging from 1.1 to 1.5). Conclusion - Compared to the general population, young lymphoma survivors have increased contact with the GP for a considerable number of health problems for up to 10 years post-diagnosis. This emphasizes the importance of robust follow-up and a good flow of information between hospital and primary care

Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors

Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors&rsquo; (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions

Post-treatment work patterns amongst survivors of lymphoma treated with high-dose chemotherapy with autologous stem-cell transplantation

Background This study describes post-treatment work patterns in lymphoma survivors treated with high-dose chemotherapy with autologous stem-cell transplantation (HDT-ASCT). It aims to identify determinants for labour force participation and exclusion after HDT-ASCT. Methods All survivors treated with HDT-ASCT for lymphoma in Norway between 1995 and 2008, aged ≥18 years at HDT-ASCT and alive at survey in 2012–2013 were eligible. We divide survivors by current employment status (full-time, part-time and unemployed). Main outcomes are current employment status, work hours and work ability. Withdrawals are patients employed when diagnosed but not before HDT-ASCT. Results Of the 274 who completed the survey, 82% (N = 225) were included in the final analyses. Mean age at survey was 52 years, 39% were female, 85% were employed when diagnosed, 77% before HDT-ASCT and 69% at survey. Employment before HDT-ASCT corresponds with a higher probability of employment at survey for a given symptom burden. In the most extensive statistical model, it increases with 37.3 percentage points. Work hours amongst withdrawals plummet after HDT-ASCT while work ability shows a rebound effect. The potential economic gain from their re-enter into the work force equals 70% of the average annual wage in Norway in 2012. Conclusions For a given symptom burden, staying employed throughout diagnosis and treatment is associated with a higher probability of future employment. These results favour policies for labour force inclusion past diagnosis and treatment increasing cancer survivors’ probability of future employment. However, we need more research on withdrawal mechanisms, and on policy measures that promote inclusion

Body image concerns in long-term head and neck cancer survivors: Prevalence and role of clinical factors and patient-reported late effects

PurposeHead and neck cancer (HNC) patients are at risk of long-term body image distress (BID). We aimed to investigate the severity of BID in long-term HNC survivors and to explore the associations between sociodemographic and clinical factors, patient-reported late effects, and cancer-related body image (BI) concerns.MethodsThis cross-sectional study included quality of life and BI assessment in an 8-year (SD =1.58) follow-up after treatment among 258 HNC survivors. Multinomial logistic regression analysis was used to investigate the relationship between three groups of BI concerns (no concerns, mild to moderate concerns, and BID) and patient-reported late effects. Sociodemographic and clinical variables were included in the model as covariates.ResultsA total of 51.2% of participants had mild to moderate BI concerns, and 9.5% reported BID. Compared to those with no BI concerns, participants with BID were more likely to live without a partner, to have had radiotherapy and surgery and to report worse emotional functioning and higher oral and throat pain. Compared to participants with no BI concerns, those with mild to moderate BI concerns reported higher oral and throat pain and speech problems.ConclusionsSome level of cancer-related BI concerns persisted in the majority of HNC survivors many years after treatment, while a small proportion of survivors experienced BID. BI concerns were associated with treatment modality and patients’ daily functioning and symptoms.Implications for cancer survivorsInsight into factors associated with BI problems may help to identify survivors at risk and may facilitate closer follow-up of survivors in need

Fear of cancer recurrence among young adult cancer survivors—exploring long-term contributing factors in a large, population-based cohort

Abstract Purpose Fear of cancer recurrence (FCR) may be debilitating, yet knowledge of FCR among the growing population of long-term young adult cancer survivors (YACS) is scarce. We explored risk of FCR and associated factors in a nation-wide, population-based cohort of YACS. Methods All 5-year survivors diagnosed at the ages of 19–39 years with breast cancer (BC), malignant melanoma (MM), colorectal cancer (CRC), leukemia (LEU), or non-Hodgkin lymphoma (NHL) between 1985 and 2009 in Norway were identified by the Cancer Registry of Norway and completed the cross-sectional comprehensive NOR-CAYACS health survey. Univariate and multivariate linear regression modeling was performed. Results In total, 936 survivors were included, with an average of 16 years since diagnoses. BC was the most prevalent cancer form (38.4%), followed by MM (24.7%), NHL (15.6%), CRC (11.8%), and LEU (9.6%). Survivors worried most about getting another cancer (74%), and (20%) reported quite a bit or a lot of FCR. BC and MM survivors had the highest FCR scores. Post-traumatic stress symptoms (PTSS) had the strongest association with FCR (Std B 0.21, p  &lt; 0.01), above demographic and clinical variables. Conclusions FCR is prevalent even among long-term YACS, including survivors of MM with favorable prognoses. Implications for Cancer Survivors Attention to ongoing risks of PTSS and FCR in this growing survivor population is warranted to optimize future survivorship care

Longitudinal kidney function outcome in aging testicular cancer survivors

Purpose: Testicular cancer survivors (TCSs) have increased risk of reduced kidney function related to treatment burden, but longitudinal studies of renal outcome in aging TCSs have been lacking. This longitudinal study describes age- and treatment-related kidney function changes in TCSs compared to a comparison group from the general population. Patients and methods: Estimated glomerular filtration rate (eGFR) was determined in blood samples from Norwegian TCSs (diagnosed 1980–1994) and surveyed median 11, 19 and 26 years since diagnosis (Survey1 [N ¼ 1273], 2 [N ¼ 849] and 3 [N ¼ 670]) defining four treatment groups; Surgery only, Radiotherapy (RT) only, Cisplatin-based chemotherapy (CBCT) 850 mg and High CBCT/RT >850 mg cisplatin or any combination of CBCT with RT. A comparison group was constructed from similarly aged men who participated in a population-based health survey. By multiple linear regressions and generalized mixed models for repeated measurements, we studied difference in eGFR between TCSs and the comparison group for all TCSs combined and stratified by treatment modality. Results: At Survey 1, the kidney function for the youngest TCSs combined versus the comparison group was significantly reduced by mean six units (mL/min/1.73 m2 ) with further decline to mean 12 units at Survey 3. The kidney function was significantly reduced in all treatment groups with the largest differences emerging for TCSs from the High CBCT/RT Group, thus indicating a deteriorating impact of high cumulative doses of cisplatin. Conclusion: Collated to the comparison group, the kidney function in TCSs became increasingly impaired during nearly three post-treatment decades, related to the treatment modality. Early detection and intervention of kidney dysfunction is important to reduce the risk of TCSs’ long-term morbidity and mortality related to nephrotoxicity, such as cardio-vascular diseases