Total late effect burden in long-term lymphoma survivors after high-dose therapy with autologous stem-cell transplant and its effect on health-related quality of life.

Lymphoma survivors after high-dose therapy with autologous stem-cell transplant (HDT-ASCT) are at risk of several late effects, which might impair their health-related quality of life (HRQoL). We assessed the total late effect burden in this population, and how it affects HRQoL. All lymphoma survivors treated with HDT-ASCT as adults in Norway between 1987 and 2008 were identified, and 271 (68%) attended both a comprehensive clinical assessment and completed a questionnaire. Severity of 45 conditions in 12 organ-system categories were graded as mild, moderate, severe or life-threatening, according to a modified version of CTCAEv4.03. At a median of 8 years after HDT-ASCT, 98% of survivors had at least one moderate or more severe late effect and 56% had severe or life-threatening late effects. Fourteen percent had low, 39% medium and 47% high late effect burden, defined as having moderate or more severe late effects in 0-1, 2-3 and >3 organsystems, respectively. Female sex, increasing age, B-symptoms at diagnosis and >1 treatment line prior to HDT-ASCT were independently associated with having high late effect burden. The survivors had significantly poorer physical and mental HRQoL assessed by the Short Form-36 compared to age- and sex-matched controls. The prevalence of poor physical and mental HRQoL increased with higher late effect burden (both P<0.001), and the low burden group had better physical HRQoL than controls (P<0.001). In conclusion, lymphoma survivors after HDT-ASCT have impaired HRQoL, seemingly driven by a high late effect burden. This highlights the importance of prevention, regular assessments for early detection and treatment of late effects and modifiable risk factors.

Benefits of Study Participation for Patients with Advanced Cancer Receiving Radiotherapy: A Prospective Observational Study.

Background: Patients with advanced cancer and bone metastases may have unmet palliative care (PC) needs that go unnoticed during clinical oncological practice. This observational study describes interventions that were initiated as the patients participated in the Palliative Radiotherapy and Inflammation Study (PRAIS). It was hypothesized that the patients would benefit from study participation due to PC interventions initiated by the study team. Methods: A retrospective review of patients' electronic records. Patients with advanced cancer and painful bone metastases included in PRAIS were eligible. All patients met with the study team before start of radiotherapy, after completion of Patient Reported Outcome Measures. Interventions initiated by the study team were documented in the patients' electronic records. Results: A total of 133 patients were reviewed: 63% males, mean (standard deviation [SD]) age 65 (9.6) and mean (SD) Karnofsky performance status (KPS) score 73.2 (9.1). Interventions were initiated in 50% (n = 67) of the patients. Changes in opioid management (69%), treatment of constipation (43%), and nausea (24%) and nutritional advice were most frequent (21%). Patients receiving interventions had lower mean KPS (70 vs. 77 p < 0.001), shorter survival time after study inclusion (median 28 vs. 57.5 weeks p = 0.005) and were more often opioid naïve (12% vs. 39% p < 0.001) than those not receiving interventions by the study team. Conclusions: Patients with advanced cancer and painful bone metastasis benefited from study participation due to multiple PC interventions initiated by the study team. The findings call for a systematic integration of PC in patients with advanced cancer. Trial Registration: ClinicalTrials.gov NCT02107664.

Limited evidence of non-response bias despite modest response rate in a nationwide survey of long-term cancer survivors-results from the NOR-CAYACS study.

PURPOSE: Declining response rates threaten the generalizability of health surveys. We investigate (1) the effect of item order on response rate; (2) characteristics of early , late and non-responders; and (3) potential non-response bias in a population-based health survey of childhood, adolescent and young adult cancer survivors (CAYACS). METHODS: We mailed a questionnaire survey to 5361 eligible CAYACS identified by the Cancer Registry of Norway (CRN), representing a range of cancer diagnoses. The 302-item questionnaire included a range of survivorship-related questions and validated patient-reported outcome measures. To investigate item-order effects on response rates, we constructed two versions of the questionnaire presenting cancer-related or socio-demographic items first. The CRN provided demographic and clinical information for the total population. Risk of non-response bias was estimated by (1) comparing outcomes between early and late responders (answered after a reminder), and (2) by applying inverse probability of participation weights to construct a total population (with 100% response) and then compare 21 a priori selected outcomes between early responders, all responders (early + late) and the total population (all eligible). RESULTS: Survey item order did not affect response rates (cancer first 49.8% vs socio-demographic first 50.2%). Shorter time since diagnosis, male gender and a malignant melanoma diagnosis remained significant predictors of non-response in a multivariable multinomial regression model. There were no significant differences on 16/21 survey outcomes between early and late responders, and 18/21 survey outcomes between early responders, all responders and the total population. CONCLUSION: Despite a modest response rate, we found little evidence for a response bias in our study. IMPLICATIONS FOR CANCER SURVIVORS: Surveys of survivor-reported outcomes with low response rates may still be valuable and generalizable to the total survivor population.

Changes in fatigue, health-related quality of life and physical activity after a one-week educational program for cancer survivors.

Background: Rehabilitation aims to improve function, but the effects of different programs are not clear. The aims of the present study were to: (1) compare the level of fatigue and health-related quality of life (HRQOL) of cancer survivors admitted to a one-week inpatient educational program (IEP) to the general population (NORMS), (2) examine changes in fatigue, HRQOL and physical activity after the IEP and (3) examine the proportions of survivors for female and male separately with clinically relevant improvement (>10% of maximum scale). Methods: Cancer survivors ≥18 years, diagnosed with breast-, prostate- or gastrointestinal cancer within the last 10 years, about to attend a one-week IEP were invited to an observational study with a pre-post design. The IEP included lectures, group discussions and physical activity. The participants completed a questionnaire on the arrival day (T0) and three months after the stay (T1). Fatigue was assessed by the Fatigue Questionnaire and HRQOL by Short Form-36. Results: Compared to NORMS, both female and male participants had significantly higher mean levels of fatigue and poorer HRQOL at T0 and T1. From T0 to T1, among all participants physical fatigue was reduced from 12.6 (SD 3.9) to 11.8 (SD 3.8; p < .001), mental fatigue from 6.3 (SD 2.2) to 6.0 (SD 2.2; p = .044) and total fatigue from 19.0 (SD 5.3) to 17.8 (SD 5.4; p = .001). Among female participants, 30% experienced clinically relevant improvement in physical fatigue, 28% in total fatigue and 36% in general health. Of male participants, 31% displayed a clinically relevant improvement in role limitations physical. Conclusion: Participants in the IEP reduced their levels of fatigue and improved aspects of HRQOL, more often observed among female participants than among males. Because of the lack of a control group it is not possible to conclude whether the changes were due to the IEP.

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.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

The EORTC CAT Core-The computer adaptive version of the EORTC QLQ-C30 questionnaire.

BACKGROUND: To optimise measurement precision, relevance to patients and flexibility, patient-reported outcome measures (PROMs) should ideally be adapted to the individual patient/study while retaining direct comparability of scores across patients/studies. This is achievable using item banks and computerised adaptive tests (CATs). The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQ-C30) is one of the most widely used PROMs in cancer research and clinical practice. Here we provide an overview of the research program to develop CAT versions of the QLQ-C30's 14 functional and symptom domains. METHODS: The EORTC Quality of Life Group's strategy for developing CAT item banks consists of: literature search to identify potential candidate items; formulation of new items compatible with the QLQ-C30 item style; expert evaluations and patient interviews; field-testing and psychometric analyses, including factor analysis, item response theory calibration and simulation of measurement properties. In addition, software for setting up, running and scoring CAT has been developed. RESULTS: Across eight rounds of data collections, 9782 patients were recruited from 12 countries for the field-testing. The four phases of development resulted in a total of 260 unique items across the 14 domains. Each item bank consists of 7-34 items. Psychometric evaluations indicated higher measurement precision and increased statistical power of the CAT measures compared to the QLQ-C30 scales. Using CAT, sample size requirements may be reduced by approximately 20-35% on average without loss of power. CONCLUSIONS: The EORTC CAT Core represents a more precise, powerful and flexible measurement system than the QLQ-C30. It is currently being validated in a large independent, international sample of cancer patients.

Increased prescription rates of anxiolytics and hypnotics to survivors of cancer in childhood, adolescence, and young adulthood-A population-based study.

BACKGROUND: Survivors of cancer diagnosed in childhood, adolescence, or young adulthood (CAYACS) risk psychological morbidities later in life. The study compares prescription rates of anxiolytics and hypnotics among survivors to rates in age- and gender-matched controls. PROCEDURES: The population-based cohort included 5,341 cancer survivors, diagnosed ≤25 years of age during 1965-2000. For each survivor, three age- and gender-matched controls were randomly selected from the general population. Data were identified from the Norwegian Cancer and Population registries and linked to the Norwegian Prescription Database. A Cox proportional hazard model was applied to estimate hazard ratios (HRs) of prescriptions during 2004-2012 to the survivors with controls as referents. RESULTS: Survivors had an increased risk of being prescribed anxiolytics with crude rates of 16.9/1,000 person years compared to 11.8/1,000 person years in controls (HR 1.41; 95% confidence interval [CI] 1.29-1.54). The relative risk was highest for survivors of neuroblastomas (HR 2.62; 95% CI 1.11-6.16), bone tumors (HR 2.00; 95% CI 1.26-3.18), and central nervous system tumors (HR 1.90; 95% CI 1.40-2.51). The risk of being prescribed hypnotics was increased with crude rates of 20.8/1,000 person years compared to 14.3/1,000 person years in controls (HR 1.44; 95% CI 1.32-1.56). The relative risk was highest for survivors of gastrointestinal tumors (HR 1.80; 95% CI 1.04-3.10), leukemias (HR 1.78; 95% CI 1.32-2.38), and soft tissue cancers (HR 1.70; 95% CI 1.09-2.64). CONCLUSIONS: Certain groups of CAYACS have an increased risk for being prescribed anxiolytics or hypnotics compared to controls. Diagnostic reasons for prescriptions are unknown, but the results indicate an increased emotional burden among these groups of survivors.

Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma.

PURPOSE: Given childhood cancer survivors' risk of treatment-induced late effects, long-term follow-up care is recommended. We explored experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood malignant lymphoma in Norway. METHODS: We conducted five focus group interviews with 34 survivors (19 females; 21 Hodgkin/13 non-Hodgkin lymphoma survivors; mean age 39 years; mean time from diagnosis 26 years). Data was analyzed using principles of thematic analysis. RESULTS: Two main themes were identified: (1) the survivors' experiences with late effects-related care and (2) their preferences for long-term follow-up care. Most of the survivors were dissatisfied with their late effects-related care due to perceptions of poor coordination of healthcare needs in a fragmented system, combined with a perceived lack of knowledge of late effects among themselves and general practitioners (GPs). All survivors valued long-term follow-up care. Oncologists were the preferred care providers, but GPs were considered acceptable providers if they had sufficient knowledge of late effects and routine examinations, short waiting times, and improved GP-oncologist collaboration. CONCLUSIONS: Our results suggest that a shared care model of long-term follow-up care involving specialists, GPs, and the survivors themselves is likely to fulfill several of the currently unmet needs among adult survivors of childhood cancers. Improved patient education about late effects and follow-up care would aid self-management. The survivors' concerns regarding lack of sufficient knowledge of late effects among GPs suggest a need for improving access to, and dissemination of, information of late effects.

Perceived needs for different components in a rehabilitation program among cancer survivors with chronic fatigue compared to survivors without chronic fatigue.

BACKGROUND: Knowledge about the user' needs is important to develop targeted rehabilitation for cancer patients with chronic fatigue (CF). The aims of the study were to examine prevalence of CF in cancer survivors attending an one-week inpatient educational program (IEP) and to identify characteristics of those with CF. Further to examine the perceived needs for different components in a rehabilitation program, need of complex rehabilitation (at least two components) and aspects of health-related quality of life (HRQoL) among survivors with CF versus those without CF. MATERIAL AND METHODS: Cancer survivors ≥18 years, diagnosed with different types of cancer within the last 10 years and attending a one-week IEP were invited to this cross-sectional study. CF was assessed by the Fatigue Questionnaire, perceived needs by asking a question about needs for different components in a rehabilitation program and HRQoL was assessed by The Medical Outcomes Study Short Form 36. RESULTS: Of 564 participants, 45% reported CF. Breast cancer, mixed cancer types (including small groups with different cancer types) and comorbidities increased the risk for having CF. Compared to participants without CF, the participants with CF reported more frequently need for physical training (86% vs. 65%, p < 0.001), physiotherapy (71% vs. 55%, p < 0.001) and nutrition counseling (68% vs. 53%, p = 0.001). Among participants with CF, 75% reported need for three or more components whereas 54% reported need for the same number of components among those without CF (p < 0.001). CONCLUSION: Almost half of the cancer survivors attending the IEP had CF. Physical training, physiotherapy and nutrition counseling were the most frequently reported needs and significantly more often observed in participants with CF than without CF. A higher percentage of those with CF reported need for a complex rehabilitation compared to those without CF. More research is necessary to obtain more knowledge to further make targeted programs to better match cancer survivors' needs.

Fatigue During and After Breast Cancer Therapy-A Prospective Study.

CONTEXT: Chronic fatigue (CF) in breast cancer (BC) survivors is multifactorial and may be caused by immune activation triggered by BC or its treatment. In the Neoadjuvant Avastin in Breast Cancer study, BC patients received neoadjuvant chemotherapy (FEC100→taxane) ± bevacizumab, a monoclonal antibody with fatigue as a potential side effect. OBJECTIVES: To examine fatigue levels and prevalence of CF before and during chemotherapy and at follow-up, and their associations with C-reactive protein (CRP) and clinical variables. METHODS: Eighty-four HER2-negative patients with cT2-4N0-3M0 BC responded to questionnaires and had CRP measured before treatment (T0), after FEC100 (T1), after taxanes before surgery (T2), and at two-year follow-up (T3). RESULTS: The prevalence of CF increased from 8% at T0 to 36% at T3, P < 0.0001. Fatigue levels peaked during chemotherapy from 12.0 at T0 to 20.0 at T2, and declined to 16.7 at T3, P < 0.001. Women with CF at T3 had higher fatigue levels at T0, T2, and T3 than those without CF (P ≤ 0.01). Psychological distress (P = 0.03) and pain (P = 0.04) at T3 were associated with CF at T3. Only psychological distress remained a significant predictor in multivariate analysis. CRP increased from T0 to T1 (P < 0.01) and declined to baseline values at T3, but changes were not associated with bevacizumab treatment. No association was found between bevacizumab or CRP, and fatigue levels or CF. CONCLUSION: Neither bevacizumab treatment nor low-grade systemic inflammation as measured by CRP was associated with the increased fatigue levels and raised prevalence of CF, observed during and after BC therapy. Increased fatigue levels at baseline and psychological distress at T3 were associated with CF at T3.

Prescriptions of Antidepressants to Survivors of Cancer in Childhood, Adolescence, and Young Adulthood: A Population-Based Study.

PURPOSE: Survivors of cancer may experience higher rates of psychological problems requiring pharmacological interventions than age-matched controls from the general population. This study compares prescription rates of antidepressants in survivors of cancer, diagnosed in childhood, adolescence, or early adulthood, to the rate in age- and gender-matched controls from the Norwegian population. METHODS: Antidepressants prescribed to 5341 cancer survivors, diagnosed ≤25 years during 1965-2000, were studied in a population-based cohort by linking data from the following nationwide registries: the Population Registry of Norway, the Cancer Registry of Norway, and the Norwegian Prescription Database. For each survivor, three age- and gender-matched controls were randomly selected from the population. A Cox proportional hazard model was applied to estimate hazard ratios (HRs) of antidepressant prescriptions during 2004-2012 to the survivors with controls as referents. RESULTS: Survivors had an increased risk of being prescribed antidepressants with crude rates of 26.9/1000 person-years compared with 22.5/1000 person-years in controls (HR 1.19; 95% confidence interval [CI] 1.12-1.28). The relative risk was highest for survivors of central nervous system tumors (HR 1.30; 95% CI 1.04-1.63), leukemias (HR 1.29; 95% CI 1.03-1.63), testicular tumors (HR 1.27; 95% CI 1.04-1.55), and "other tumors" (HR 1.42; 95% CI 1.10-1.84). No effect of age at cancer diagnosis was found. CONCLUSION: Certain groups of survivors of cancer in childhood, adolescence, or young adulthood have a slightly increased risk for being prescribed antidepressants than their peers. The results may indicate an increased prevalence of depression among these survivors, but diagnostic reasons for prescriptions need to be confirmed in clinical studies.

Characteristics of breakthrough cancer pain and its influence on quality of life in an international cohort of patients with cancer.

OBJECTIVES: Breakthrough cancer pain (BTP) represents a treatment challenge. Objectives were to examine the prevalence and characteristics of BTP in an international sample of patients with cancer, and to investigate the relationship between BTP and quality of life (QoL). METHODS: This was an observational cross-sectional multicentre study. Participating patients completed self-report questionnaires on a touch-screen laptop computer, including the Brief Pain Inventory, Alberta Breakthrough Pain Assessment Tool (ABPAT) and European Organisation for Research and Treatment of Cancer 30-item Core Quality of Life Questionnaire (EORTC QLQ-C30). The study was performed in 17 centres in 8 countries and involved 4 languages (Norwegian, Italian, German and English). RESULTS: Records from a convenience sample of 978 patients with advanced cancer were analysed; mean age was 62.2 years, 48.3% were women and 84.4% had metastatic disease. A total of 296 patients (30%) had no pain, defined as worst pain in the past 24 hours <1 on a 0-10 scale. Of the 682 patients with a pain score ≥1, 393 (58%) reported no BTP on the screening item, while 289 (30%) confirmed flare ups of BTP. Patients with BTP reported significantly higher pain intensity scores (<0.001) than patients without BTP; 57.1% of patients rated BTP at its worst as being severe: ≥7 on a 0-10 scale. Time from onset to peak intensity was <10 min for 42.9%, and average time to pain relief was 27.1 min. BTP was commonly triggered by medication wearing off (28%). Patients with BTP had significantly worse mean outcomes on 10 of 15 functional and symptom scales of the EORTC QLQ-C30 (<0.001). Severe pain intensity in the last week was a powerful predictor of BTP (OR 4.1) and poor QoL (OR 1.9). CONCLUSIONS: BTP is highly prevalent with prolonged episodes despite analgaesics, and has a pervasive impact on QoL. Patients reporting high pain intensity should be carefully evaluated for BTP and efficacy of analgaesic treatment, to provide optimal pain management and improve QoL. TRIAL REGISTRATION NUMBER: NCT00972634; Results.

Health-related quality of life in teenagers with a parent with cancer.

PURPOSE: Health-related quality of life (HRQoL) in teenagers exposed to parental cancer has shown divergent results as an outcome measure. In this study we wanted to: 1) compare the HRQoL of teenagers exposed to parental cancer (CASES) with normative European HRQoL data (NORMs) measured close to parental diagnosis and treatment; 2) study changes in the HRQoL of CASES from baseline to follow-up; 3) explore sex differences in the HRQoL of CASES; and 4) explore eventual confounders of HRQoL of CASES at baseline. METHODS: Forty-five families with one parent diagnosed with primary invasive cancer were included, these families had 69 teenagers. At the follow-up, 26 families with 29 teenagers complied. Both parents and teenagers filled in electronic questionnaires over the Internet. HRQoL in teenagers was self-rated by the KIDSCREEN-27 at baseline and follow-up, and the responses were compared to a European normative sample (NORMs). RESULTS: 1) The teenagers scored significantly lower on the Physical well-being dimension compared to the NORMs at baseline, while no significant differences were observed concerning the four other HRQoL dimensions. 2) Some significant improvements were observed on HRQoL dimensions from baseline to follow-up. 3) CASES girls showed a trend towards lower HRQoL scores compared to boys. 4) Parental cancer-related characteristics and family function were not related to teenagers' HRQoL, but so were teenagers' self-esteem. CONCLUSIONS: At group level, living with a parent who receives curative treatment for a recently diagnosed cancer affects teenagers' HRQoL to certain extent. Self-esteem is a confounder to teenagers' HRQoL in our sample.

Psychometric testing of the Norwegian version of the Expanded Prostate Cancer Index Composite 26-item version (EPIC-26).

OBJECTIVES: In patients with prostate cancer, evaluation of quality of care requires the inclusion of patient-reported outcomes measures assessed by validated and reliable instruments. Basic psychometric tests of the Norwegian version of the Expanded Prostate Cancer Index Composite with 26 items (EPIC-26) were performed in this study. MATERIAL AND METHODS: Translation of the original questionnaire (University of California, Los Angeles Prostate Cancer Index Composite), field testing and retranslation were done according to published guidelines. The final EPIC-26 items were subsequently selected from the Norwegian version of the EPIC-50 with slight verbal adjustments to comply with the English version of the EPIC-26. Reliability and validity were tested among 471 patients who, between 2009 and 2010, had been included in a prospective Norwegian multicenter study assessing adverse effects after radical prostatectomy or prostatic radiotherapy, usually combined with (neo)adjuvant hormone treatment. All patients completed the EPIC-26 before treatment and 3 and 12 months afterwards. RESULTS: Internal consistency was documented by Cronbach's alpha coefficients ranging from 0.64 to 0.91 for the five domains/subdomains. Item-to-scale correlation coefficients ranged from 0.20 to 0.88, with the lowest value (0.20) for overall sexual problem. Criterion validity was proven by significant correlations between individual responses to the International Prostate Symptom Score and sum scores of the irritative/obstructive subdomain score of the EPIC-26. Satisfactory sensitivity and responsiveness reflected clinical utility for assessing between-group differences and treatment-related changes. CONCLUSIONS: Based on basic psychometric tests, the Norwegian version of the EPIC-26 showed acceptable reliability and validity for assessment of adverse effects after treatment of non-metastatic prostate cancer.

Opioids for outpatients with cancer in their last year of life: A nationwide pharmacoepidemiological study.

OBJECTIVE: Opioids are the main pharmacological treatment for moderate-to-severe cancer pain. Few longitudinal studies have examined the prescription prevalence (PP) of opioids to patients with cancer. The aims of the study were to examine 1) changes in the PP of opioids from 2005 to 2009 among outpatients with cancer who were in their last year of life and 2) associations between the PP of opioids and medical and sociodemographic factors. DESIGN: Retrospective, registry-based, national study. PATIENTS: This study used data on all patients with cancer who died 2005-2009, combining the following three complete nationwide registries; prescription data from the Norwegian Prescription Database, data on cancer diseases from the Cancer Registry of Norway, and sociodemographic data from Statistics Norway. RESULTS: The study population consisted of 44,579 adults (mean age 72 years at death, 54 percent males). The opioid PP increased from 74 to 82 percent during the study period. Oxycodone had the highest PP, and increased from 39.8 to 48.5 percent during the period, whereas the PP of morphine declined from 29.0 to 27.3 percent. The PP for fentanyl remained stable at 17 percent. The PP of opioids increased toward death with higher PP during the last 3 months of life compared to previous 3-month periods. Older patients (>60) were less likely to receive opioids, while prostate or pancreatic cancer increased the odds for opioid prescriptions (p < 0.001, Odds ratio [OR] 2.60 and OR 1.98, respectively). CONCLUSION: The PP increased yearly during the study period. Use of oxycodone increased while that of morphine decreased.

A national study on conditional survival, excess mortality and second cancer after high dose therapy with autologous stem cell transplantation for non-Hodgkin lymphoma.

This national population-based study aimed to investigate conditional survival and standardized mortality ratios (SMR) after high-dose therapy with autologous stem-cell transplantation (HDT-ASCT) for non-Hodgkin lymphoma (NHL), and to analyse cause of death, relapses and second malignancies. All patients ≥18 years treated with HDT-ASCT for NHL in Norway between 1987 and 2008 were included (n = 578). Information from the Cause of Death Registry and Cancer Registry of Norway were linked with clinical data. The 5-, 10- and 20-year overall survival was 61% (95% confidence interval [CI] 56-64%), 52% (95%CI 48-56%) and 45% (95%CI 40-50%), respectively. The 5-year survival conditional on having survived 2, 5 and 10 years after HDT-ASCT was 81%, 86% and 93%. SMRs were 12·3 (95%CI 11·0-13·9), 4·9 (95%CI 4·1-5·9), 2·4 (95%CI 1·8-3·2) and 1·0 (95%CI 0·6-1·8) for the entire cohort and for patients having survived 2, 5 and 10 years after HDT-ASCT respectively. Of the 281 deaths observed, 77% were relapse-related. Treatment-related mortality was 3·6%. The 10-year cumulative incidence of second malignancies was 7·9% and standardized incidence ratio was 2·0 (95%CI 1·5-2·6). NHL patients treated with HDT-ASCT were at increased risk of second cancer and premature death. The mortality was still elevated at 5 years, but after 10 years mortality equalled that of the general population.

The Edmonton Symptom Assessment System: Poor performance as screener for major depression in patients with incurable cancer.

BACKGROUND: Depressive symptoms are prevalent in patients with advanced cancer, sometimes of a severity that fulfil the criteria for a major depressive episode. AIM: The aim of this study was to investigate how the item on depression in the Edmonton Symptom Assessment System with a 0-10 Numerical Rating Scale performed as a screener for major depressive episode. A possible improved performance by adding the Edmonton Symptom Assessment System-Anxiety item was also examined. DESIGN: An international cross-sectional study including patients with incurable cancer was conducted. The Edmonton Symptom Assessment System score was compared against major depressive episode as assessed by the Patient Health Questionnaire-9. Screening performance was examined by sensitivity, specificity and the kappa coefficient. SETTING: Patients with incurable cancer (n = 969), median age 63 years and from eight nationalities provided report. Median Karnofsky Performance Status was 70. Median survival was 229 days (205-255 days). RESULTS: Patient Health Questionnaire-9 major depressive episode was present in 133 of 969 patients (13.7%). Edmonton Symptom Assessment System-Depression screening ability for Patient Health Questionnaire-9 major depressive episode was limited. Area under the receiver operating characteristic curve was 0.71 (0.66-0.76). Valid detection or exclusion of Patient Health Questionnaire-9 major depressive episode could not be concluded at any Edmonton Symptom Assessment System-Depression cut-off; by the cut-off Numerical Rating Scale ⩾ 2, sensitivity was 0.69 and specificity was 0.60. By the cut-off Numerical Rating Scale ⩾ 4, sensitivity was 0.51 and specificity was 0.82. Combined mean ratings by Edmonton Symptom Assessment System-Depression and Edmonton Symptom Assessment System-Anxiety revealed similar limited screening ability. CONCLUSION: The depression and anxiety items of the Edmonton Symptom Assessment System, a frequently used assessment tool in palliative care settings, seem to measure a construct other than major depressive episode as assessed by the Patient Health Questionnaire-9 instrument.

Lifestyles of cancer survivors attending an inpatient educational program-a cross-sectional study.

PURPOSE: Cancer survivors have increased risk for adverse health effects, but the risk can be reduced by adopting a healthy lifestyle. Knowledge of lifestyle in terms of physical activity (PA), diet (intake of fruit and vegetables [F&V]) and smoking behaviors of cancer survivors enrolled in an inpatient educational program and identification of subgroups not meeting the lifestyle guidelines are needed to set up more targeted programs. METHODS: We invited 862 cancer survivors, ≥18 years, diagnosed within the last 10 years and about to attend a 1-week educational program, to participate in this cross-sectional study. Sixty-seven percent (n = 576) returned the questionnaire before the start of the program. PA, F&V intake (5-A-Day) and smoking behaviors were self-reported. Logistic regression analyses were used to identify the characteristics of those not meeting the guidelines. RESULTS: Sixty-three percent were women, median age was 60 years (range 28-83), 52 % had high education and median time since diagnosis was 12 months (range 2-119). Fifty-five percent did not meet the PA guidelines, 81 % did not meet the 5-A-Day guidelines and 12 % were current smokers. In multivariate analyses, age ≥60 years and low education were associated with not meeting the PA guidelines, and male gender and low education were associated with not meeting the 5-A-Day guidelines. Living alone was associated with smoking. CONCLUSIONS: The majority of cancer survivors attending an educational program do not meet the public guidelines for PA and diet. Special attention should be given to those who are male, over age 60 years and with low education.