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Astri Syse1, Gjøril B Aas1, Jon H Loge2,31Cancer Registry of Norway, 2Oslo University Hospital, 3University of Oslo, Oslo, NorwayBackground: Today many people are choosing to have children later in life. Additionally, the use of sophisticated diagnostic tools and screening modalities has increased over recent years. Because of these factors, cancer is being diagnosed more frequently during the child-rearing years. Sociodemographic and cancer-related information on families and minor (0–18 years) and young adult (YA) (19–25 years) children experiencing parental cancer is scarce, but this information is vital for healthcare initiatives aimed toward those potentially adversely affected. Therefore, the aim of this study was to describe features of families and minor and YA children affected by parental cancer in a nationwide population.Methods: Complete Norwegian birth cohort data were obtained from national registries. Descriptive prevalence and incidence statistics were collected for parents and minor and YA children. Logistic regression models were used to assess factors likely to influence parental death.Results: Every year around 0.3% of all families with children under the age of 18 years encounter parental cancer, and 3.1% of minors and 8.4% of YAs have a parent who has been diagnosed with cancer. This study found skin, breast, testicular, and colorectal cancers were the most common forms of cancer diagnosed. The sociodemographic features of those affected were fairly similar to those of the general population. One in five children experienced parental death from cancer; parental death was more often paternal than maternal and was most common in parents diagnosed with leukemia or brain, colorectal, and lung tumors. Deaths are uncommon among parents without cancer.Conclusion: Adequate assistance for minor and YA children affected by parental cancer requires knowledge of their number and characteristics. Parental cancer is more common than previously suggested: the annual incidence of parental cancer for children under 18 years of age is 0.3%, whereas approximately 4% of children aged 0–25 years have or have had parents diagnosed with cancer, corresponding to a population prevalence of 1.4%. Around 20% of these children experience parental death, and surveys of live respondents should account for this.Keywords: incidence, neoplasm, parental cancer, prevalence, Norway

BACKGROUND: Negative health outcomes of chronic fatigue (CF) in disease-free cancer survivors are mainly unexplored. Aims of this study were to examine mortality and causes of death in Hodgkin's lymphoma survivors (HLSs) compared to controls from the general population, and to explore if CF was associated with increased mortality. METHODS: HLSs (n=557) invited to participate in a survey on late effects in 1994 were divided into three groups: participants without CF (n=329), participants with CF (n=113), non-participants (n=98). Controls matched for gender and age were drawn from the general population (five per HLSs, n=2785). Observation time was calculated from 1st January 1994 until date of death or cut-off at 1st January 2007. Kaplan-Meier plots were used for univariate analyses and Cox models for multiple covariates. RESULTS: Compared to controls HLSs had nearly five times higher mortality (HR=4.93; 95% confidence interval [CI]: 3.91-6.21) and the mortality rate of HLSs was higher than the rate of their controls for the entire observation period. Mortality was increased in all groups: participants with CF: HR=4.85 (95% CI: 3.02-7.77), participants without CF: HR=4.35 (95% CI: 3.16-6.00), non-participants: HR=9.45 (95% CI: 5.44-16.41). Compared to the controls HLSs had over six times increased mortality of cancer (HR: 6.6, 95% CI: 4.7-9.2) and almost five times increased mortality of cardiovascular diseases (HR: 4.9, 95% CI: 3.1-7.9). CONCLUSIONS: HLSs had almost five-time increased mortality compared to controls. CF was not associated with increased mortality rate. The high mortality among the non-participating HLSs indicates that serious health problems are underestimated in this group. This has implications for the interpretation of surveys in cancer survivors. [ABSTRACT FROM AUTHOR]

OBJECTIVE:Tentative results from a pilot study showed that patients with advanced cancer were willing and able to take part in a group exercise intervention. Limited knowledge exists, though, about the meaning and significance of such programs. The purpose of the present study was to understand the meaning of such an intervention for the individual participant and thereby to provide knowledge for shaping future clinical practice. METHODS:Thirty-four palliative cancer patients with a life expectancy of less than 1 year completed a 6-week group exercise program. Five randomly selected individuals were interviewed 7 months after completion. Results from a self-report evaluation questionnaire identified relevant themes that formed the basis of an interview guide. These were addressed in a semistructured interview. Verbatim transcripts were analyzed with a phenomenological-hermeneutical approach. RESULTS:Two main themes emerged from the interviews: (1) perceptions of the group and (2) a secure and caring setting for the group. Themes identified regarding perception of the group were a sense of belonging and commitment. Themes identified regarding a secure and caring setting for the group were a life-empowering group as a setting for enhancing coping, the qualifications of those who led the group, and a public gym as an unsuitable setting. SIGNIFICANCE OF RESULTS:Our study indicates that an individually adjusted group exercise program, with competent leaders, can provide a setting to enhance psychological well-being in cancer patients with life expectancy below 1 year. Small sample size, however, limits the possibility to generalize the findings. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To investigate if attitudes towards disclosure of prognostic information vary by speciality, previous experience and demographic factors in a general physician population. METHODS: A postal survey among a representative sample of Norwegian physicians across all specialities (N=1605), using a translated questionnaire previously used to study attitudes towards disclosing prognostic information among US internists. RESULTS: A response rate of 70% was obtained after one reminder. 85% of the responders agreed to the helpfulness of an optimistic attitude. A factor analysis revealed three meaningful factors: 'Prognostic communication is stressful', 'Fearing loss of reputation' and 'Reinforcement of positive prospects'. In multivariable models significantly more female than male physicians found aspects of prognostication straining (beta=0.143, p<0.001). Those more experienced in communication of prognostic information towards end of life were less likely to support using reinforcement of positive prospects (beta=0.067, p=0.001). CONCLUSION: After years of focusing on patient autonomy and open communication between patient and physician many Norwegian physicians display attitudes that might hide the true content of prognostic information from the patients. PRACTICE IMPLICATIONS: Many physicians think they are inadequately trained in prognostication and communication of prognostic information, suggesting that increased education and training are needed if patients' wishes for information on prognosis are to be met in an individualised manner. [ABSTRACT FROM AUTHOR]

Objective: To compare patients' perceptions and preferences of two different versions of informed consent documents.Methods: Patients eligible for a trial of palliative chemotherapy for lung cancer (N = 22) were randomly assigned to receive either an original consent document or a shortened version written for the present study. Semi-structured interviews were conducted after the patients had read the consent documents. The interviews were transcribed verbatim and analysed using qualitative content analysis.Results: Few differences between the two groups were found with respect to patients' assessment of the amount of content and the most important information in the documents. Information about disease and treatment seemed to be of most interest for the patients, while information about research aspects of the study such as financing, confidentiality and publishing (formalities) was judged to be of lesser relevance. Two patients who read the original document indicated that they treated the formalities as secondary.Conclusion: Patients seemed to pay little attention to the research aspects, and thus risked to misunderstand the main point of the consent document.Practice implications: The structure of consent documents should clarify for the readers that they are asked to take part in research, and that participation is voluntary. [ABSTRACT FROM AUTHOR]

Objective: Optimal clinical practice depends upon a precise language with common understanding of core terms. The aim of the present study was to examine how Norwegian physicians understand the commonly used but poorly defined term "terminal".Methods: A questionnaire was mailed to 1605 Norwegian physicians, representative of the Norwegian medical community. Nine hundred and sixty-eight responded and defined "terminal" in expected weeks left to live. The effects of gender, age, specialty, and experience with prognostication toward end of life on the estimation of "terminal" were investigated.Results: Norwegian physicians on average expect a "terminal" patient to have 3.6 (+/- 3.5 SD) weeks to live with expectation ranging from 0 to 26 weeks. The majority (83.5%) defined "terminal" as less than 5 weeks' survival; 15.0% as 5 to 12 weeks' survival and 1.5% as more than 12 weeks' survival. No difference between genders was observed, whereas the youngest physicians (27-39 years) held shorter definitions than the other age groups. Physicians in internal medicine, surgery, and anaesthesiology held significantly shorter estimations of "terminal" than did physicians in general practice, public health, and psychiatry.Significance Of Results: Our study shows that the majority of Norwegian physicians restrict "terminal" to the last 2-4 weeks of patients' lives. A life expectancy of a few days compared to several weeks should lead to different clinical actions. Efforts should therefore be made to come to a common definition of the term. In our opinion the use of "terminal" should be limited to when death is expected within a few days. [ABSTRACT FROM AUTHOR]

Objective: The primary aim of the present article was to identify palliative care patient populations who are willing to participate in and able to complete a group exercise/physical training program designed specifically for the individual patient.Method: We conducted a prospective phase II intervention study examining the willingness and ability of palliative care cancer patients to participate in a group exercise physical training program. Patients who were diagnosed with incurable cancer and had a life expectancy of less than 1 year at two outpatient clinics were invited to participate in an exercise program in the hospitals. The groups met twice a week over a 6-week period.Results: One hundred one consecutive patients were asked for inclusion. Sixty-three patients agreed to participate. Sixteen (25%) of the 63 patients dropped out after consent was given, but before the program started due to medical problems, social reasons, or death. Thus, 47 patients started the exercise program. Thirteen patients withdrew during the program due to sudden death, medical problems, or social reasons. The most frequent reasons for withdrawal were increased pain or other symptoms. Thirty-four patients completed the exercise program.Significance Of Results: A high proportion of incurable cancer patients were willing to participate (63%) in a structured exercise program. The attrition rate was high, but despite being severely ill, 54% of the patients completed the exercise period. This shows that a physical exercise program tailored to the individual patient is feasible in this population. [ABSTRACT FROM AUTHOR]

BACKGROUND: Pain assessment is challenging in cognitively impaired (CI) patients due to inadequate self-report skills and observational ratings are an alternative. The Doloplus-2 is developed for pain assessment in the CI and rates somatic, psychomotor and psychosocial behaviours as indicators of pain. AIMS: To translate the Doloplus-2 into Norwegian, to test the Doloplus-2 with regard to criterion validity and to obtain the administrators' evaluation of the clinical performance of the Doloplus-2. METHODS: Nurses at three nursing homes, in collaboration with two research assistants, administered the Doloplus-2 to 59 patients with dementia. The results were compared against experienced clinicians' pain ratings. Regression analyses were performed to explore each different item's contribution to the total pain score. The administrators also completed a debriefing questionnaire. RESULTS: The instrument was translated according to international guidelines. Regression analyses demonstrate that the Doloplus-2 score accounts for 62% (R2) of the expert score and that the four most informative items could explain 68% of the expert score. Analyses of the different Doloplus-2 items indicate that facial expressions explain most and social life least of the expert's pain ratings. The administrators reported that Doloplus-2 was helpful and easy to administer, but questioned the validity of the psychosocial domain. CONCLUSIONS: The Norwegian Doloplus-2 demonstrates satisfactory criterion validity and clinical value in this pilot study. However, the content of the instrument needs a general re-evaluation, especially with regard to the psychosocial items. [ABSTRACT FROM AUTHOR]

The most commonly encountered clinical conditions presenting with cognitive failure (CF) are delirium, dementia and amnestic disorders. Of these, delirium is probably the most prevalent in palliative care, and it is potentially reversible. Thus, improvement in diagnostics seems warranted. The objectives of this review were to examine the methods for assessment of CF and delirium in palliative care. Twenty-two studies were reviewed: 64% were published in 2000 or later. Twelve reports focused on delirium, six on CF, while the remaining four assessed confusion (2), hallucinations and general psychological morbidity. Median sample size was 100 (20393). Ten different instruments were used: The Mini Mental State Exam was used in 13 studies. Five studies were validation reports of new or existing instruments. The term CF is an imprecise description of a loss in one or more of the cognitive functions. The interchangeable use of CF as a description of specific diagnoses should be avoided, as this contributes to prevalence rates that are not representative. Assessment tools that discriminate between the different diagnostic entities presenting with CF should be used in future studies. [ABSTRACT FROM AUTHOR]

Fatigue is a major complaint among advanced cancer patients. Several instruments are available for measuring fatigue. The EORTC QLQ-C30 is one of the most frequently used health-related quality of life (HRQOL) instruments, and it includes a three-item fatigue subscale. Limited knowledge exists about the validity, performance and sensitivity of EORTC QLQ-C30 fatigue scale as compared with a fatigue-specific instrument. The aim of the present study was to validate the EORTC QLQ-C30 fatigue scale (FA) against the Fatigue Questionnaire (FQ). The FQ is frequently used and was developed to measure fatigue in both cancer and noncancer populations. The FQ measures physical (PF, seven items) and mental fatigue (MF, four items). The study population included two different cohorts: A) patients with advanced metastatic cancer included in a prospective randomized study of palliative radiotherapy (n = 238); B) patients with leukaemia and malignant lymphoma curatively treated with stem-cell transplantation and high-dose chemotherapy (n = 128). The analysis demonstrated that the FA correlated higher with the PF scale (r = 0.67-0.75) as compared with the MF scale (r = 0.49-0.61). The item scale correlations between FA items and the PF scale were consistently higher than between FA items and the MF scale. A factor analysis including all the items within the FA and the FQ identified two factors. All FA items loaded on a PF factor (0.70-0.85). A floor/ ceiling effect, indicating a high number of respondents with lowest, respectively, highest scores was observed more frequently in the FA as compared with the FQ. The PF discriminated better between diagnostic groups with different levels of fatigue than the FA did. In conclusion, the EORTC QLQ-C30 fatigue scale is measuring physical fatigue. A floor/ ceiling effect seems to appear for the EORTC QLQ-C30 fatigue scale. The validity of the EORTC QLQ-C30 fatigue scale is to be questioned for use in palliative care patients. In studies with fatigue as a defined end point, a domain-specific instrument should, therefore, be added. [ABSTRACT FROM AUTHOR]

In this study, cancer patients' characteristics associated with death in nursing homes were explored. The study sample included 395 cancer patients who had participated in a trial of palliative care, 260 (66%) patients died in hospital, 80 (20%) at home and 55 (14%) in nursing homes. Health-related quality of life was prospectively recorded using the EORTC QLQ-C30 questionnaire. Death in nursing home was associated with greater age, not living with spouse and poor performance status. Patients dying in nursing homes reported severe functioning impairments and more fatigue and appetite loss compared with those dying elsewhere. The association between death in nursing homes and poor physical, role, cognitive and social functioning remained significant when sociodemographic and medical differences were taken into account. Further research on frail elderly cancer patients is warranted to improve their care, to evaluate the appropriateness of nursing home placement and for future planning of palliative care services. [ABSTRACT FROM AUTHOR]

The European Association of Palliative Care recommends the Brief Pain Inventory questionnaire (BPI) as a pain assessment tool in clinical studies. After translation into Norwegian, we administered the BPI to 300 hospitalized cancer patients. Cronbach's alphas were computed to assess reliability, and factor analysis was utilized to ascertain construct validity. The BPI interference and pain severity scales were validated against items on pain intensity and pain influence on daily function in the European Organization for Research and Therapy of Cancer (EORTC) QLQ-C30 questionnaire. In total, 235 patients (78%) were able to complete the BPI questionnaire, but 82 (35%) of these questionnaires had one or more missing items. Cronbach's alphas were 0.87 for the pain severity and 0.92 for the interference scales. A factor analysis identified three factors; pain intensity, interference with physical function, and interference with psychological functions/sleep. These three factors explained 82% of the variance. The correlation between BPI pain severity index and the EORTC QLQ-C30 item on pain intensity was 0.70 (P < 0.001). The correlation between BPI interference index and the EORTC QLQ-C30 item on pain influence on daily living was 0.62 (P < 0.001). We conclude that BPI has satisfactory psychometric properties, but is not completed by a significant proportion of patients. Further research is needed to establish pain assessment tools for patients unable to answer a comprehensive pain questionnaire, to establish routines for analysis of missing values, and to investigate if pain interference items also reflect disease-related impairment. [ABSTRACT FROM AUTHOR]

Success in oncology has traditionally been measured in terms of cure, survival, and tumour response. However, more recently, health-related quality of life has emerged as an important outcome, particularly in the palliation setting. We review published randomised studies from two areas in palliation: those assessing the effectiveness of palliative care programmes and those looking at the effects of palliative chemotherapy compared with best supportive care. In the latter studies, there was an improvement in research methods between the late 1980s and 2000, owing to the use of standardised instruments, specification of endpoints, and improvements in data presentation and interpretation. A range of health-related quality-of-life instruments were used in the studies, which makes comparisons difficult. This was particularly true of the palliative-care programmes. Attrition due to the death of patients in the study groups was also a problem and needs to be taken into account in study planning and design, as well as in data collection. A common standard for scoring health-related quality of life measurements both within and between instruments would improve the interpretation of findings and their clinical application, thereby giving them greater effect on clinical decision-making. [ABSTRACT FROM AUTHOR]

The prevalence of chronic fatigue (CF), elevated fatigue levels >six months, is 2.5-3 times higher in long-term Hodgkin disease survivors (HDSs) than in the general population (GP). This is the first study comparing the quality of life (QoL) of chronic fatigued survivors with that of chronic fatigued subjects in the GP. The fatigue questionnaire (FQ) and the SF-36 were mailed to 591 HDSs successfully treated at the Norwegian Radium Hospital from 1971 to 1997. Patient data were compared with nationally representative GP data, adjusted for age, gender and education. The response rate was 80% (N = 475), median follow-up 195 months (range 53-431), mean age 46 years (range 21-74), and 44% were females. HDSs reported significantly poorer QoL than the GP with lower scores on six of eight SF-36 scales (P < 0.001). The subgroup of HDSs with chronic fatigue however (N = 142/475, 30%) had better QoL on five of eight SF-36 scales than subjects with CF in the GP (N = 224/2141, 11%), particularly mental health and emotional role-functioning (P = 0.005 and <0.0001). No differences were found on the physical SF-36 domains. Overall, HDSs reported lower QoL than the GP, in particular the HDSs with CF. Their QoL was similar to that of GP subjects with CF, but with significantly better mental health status. This suggests that CF in long-term survivors may be associated with more physical than psychological aspects of long-term cancer survivorship. [ABSTRACT FROM AUTHOR]

Purpose: Treatment-related sexual problems are common, but understudied, among survivors of Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS). We investigated awareness of, and information needs regarding, sexual problems as late effects in a nation-wide sample of long-term CAYACS. Methods: Five-year survivors were identified by the Cancer Registry of Norway, diagnosed between 1985 and 2009 with any childhood cancer (0-18 years of age, excluding central nervous system tumors), leukemia, colorectal cancer, breast cancer, non-Hodgkin lymphoma, or malignant melanoma (19-39 years of age). Malignant melanoma survivors treated with local surgery only served as an unmatched reference group. Survivors were mailed a survey, including items on awareness and information needs. Descriptive statistics and logistic regression analyses were used for data analyses. Results: Of 5361 CAYACS invited, 2104 responded (39%), of which 1870 were eligible for inclusion. In all, 62% were aware of sexual problems as late effects (46% aware only, 16% experienced it) and 31% reported information needs. Of all groups, childhood cancer survivors reported the lowest level of awareness (43% aware, 7% experienced it) and the highest information needs (38%). In multivariable models, awareness was associated with higher education, shorter time since treatment, more intense treatments, and experiencing hormonal changes and reduced fertility. Information needs were associated with having experienced sexual problems, female gender, higher treatment intensity, chronic fatigue, and increased depressive symptoms. Conclusions: A substantial proportion of long-term CAYACS report being unaware of, and have information needs regarding sexual problems as late effects decades beyond treatment. Addressing such issues during follow-up care is important.

The 'Oslo Chronic Fatigue Consortium' consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation.Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities. Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.

Purpose: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is an established treatment predominantly for malignancies. Chronic graft-versus-host disease (cGVHD) is the leading long-term complication after allo-HSCT, but knowledge on cGVHD and health-related quality of life (HRQOL) in long-term survivors of allo-HSCT performed in childhood, adolescence, and young adulthood (CAYA) is scarce. Therefore, we aimed to (1) assess prevalence and risk factors of active cGVHD using the 2014 National Institutes of Health-Consensus criteria, (2) investigate associations between cGVHD severity, patient-reported symptom burden, and HRQOL, and (3) compare HRQOL of survivors to population norms. Methods: We conducted a nationwide cross-sectional study in long-term survivors of CAYA allo-HSCT combining clinical examinations and patient-reported outcome measures. Results: We included 103 survivors, 55 (53%) females, median age of 19.6 years [range 0.3-29.9] at HSCT, 16.8 years [6.0-32.0] from HSCT, and 77 (75%) with underlying malignancy. Overall, 32 (31%) survivors were diagnosed with active cGVHD. The risk of active cGVHD was increased with prior acute GVHD and reduced with in vivo T cell depletion. cGVHD severity was associated with increased symptom burden, but not with adverse HRQOL. Compared to Norwegian population norms, allo-HSCT survivors reported significantly lower HRQOL. Conclusion: These results indicate a high prevalence of cGVHD in long-term survivors of CAYA allo-HSCT. Although we did not find an association between cGVHD severity and HRQOL, survivors reported significantly poorer HRQOL compared to population norms. Knowledge on the long-term consequences of cGVHD will be important for optimizing treatment and long-term follow-up care after CAYA allo-HSCT.

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., Competing Interests: The authors declare that they have no conflict of interest., (© Asta Bye et al., 2022; Published by Mary Ann Liebert, Inc.)

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.

Purpose: Efficient physician communication with adolescent cancer survivors (ACS) during follow-up consultations is important to enable survivors to take responsibility for their health. The present study had two aims: to develop a communication tool to enhance structured consultations and improve clinician communication in follow-up consultations, and to pilot-test the tool in physicians' consultations with ACS. Methods: Clinicians and communication experts collaborated closely to develop the 7 Memory Hooks (7MH) communication tool and a corresponding coding scheme for scoring communication behavior in consultations. Thirty-seven follow-up consultations between ACS and physicians were video-recorded (22 before intervention and 15 after intervention). The intervention consisted of a didactic lecture, a group workshop, and individual coaching to provide feedback to physicians on the communication skills observed in the pre-intervention videos. We then compared physicians' communication behavior both before and after intervention. Results: Fourteen physicians participated in the 7MH training. The mean total score on the 7MH scheme was significantly higher post-intervention compared with pre-intervention ( p  = 0.001). Six behaviors changed significantly after the intervention. At a group level, physicians were more likely to be alone with the adolescent ( p  = 0.004) and to prepare the patient for transition to adult heath care ( p  = 0.040). They asked more often about the patients' expectations ( p  = 0.007) and resources (( p  = 0.019). And they acknowledged patients' concerns more often ( p  = 0 .016 ) but talked significantly less about physical activity ( p  = 0.012). Conclusion: A physician communication tool, designed bottom-up and developed in collaboration with the clinic, shows promising effects on physicians' communication behavior at follow-up consultations with ACS.

Neuroticism is a basic personality trait concerning negative feelings under stressful conditions. Our purpose was to examine the rate of high neuroticism and factors associated with high neuroticism in long-term (≥ 5 years) survivors of childhood, adolescent, and young adult cancer (CAYACSs). Norwegian CAYACSs aged 0-39 years when diagnosed and treated between 1985 and 2009 for cancer in childhood/adolescence (0-18 years), or as young adults (19-39 years) and alive in 2015 were mailed a questionnaire. Data from 1629 CAYACSs (481 children/adolescents and 1148 young adults) were analyzed. High neuroticism was found in 44% of survivors of childhood/adolescent cancers versus 34% in survivors of young adult cancer (p < 0.001). The rate of high neuroticism in female CAYACSs was 40% and in males 30% (p < 0.001). The corresponding difference between male survivor group was non-significant. In multivariable analysis, young age at survey, more adverse effects, poor self-rated health, female sex, chronic fatigue, and increased depression remained significantly associated with high neuroticism. Cancer treatment, comorbidity, and lifestyle were significant in bivariate analyses. Cancer at earlier age could increase the risk of high neuroticism among adult survivors. Screening for neuroticism could identify CAYACSs at risk for experiencing multiple health concerns and needing special follow-up attention., (© 2022. The Author(s).)

Objective: Knowledge is needed on the total disease burden across the sexes in inflammatory arthritis (IA). We aimed to compare disease burden, including a broad range of health aspects, across men and women with IA treated with tumor necrosis factor inhibitors (TNFi)., Methods: Adult outpatients with IA (rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis) were included as part of standard care. Patient-reported outcomes, disease activity, TNFi trough levels, calprotectin, Work Productivity and Activity Impairment, comorbidities and cardiovascular risk profile were assessed. Unadjusted comparisons across sexes were done with independent t-test, Mann-Whitney U-test and X2-test and adjusted analyses with General Linear Models and logistic/ordinal logistic regression., Results: A total of 305 IA patients were included (167 men, 138 women). A significantly lower proportion of women (45%) than men (59%) were in remission according to disease-specific composite scores (p = 0.02). Women had significantly worse scores on pain, joint pain, fatigue, enthesitis, Health Assessment Questionnaire and Short Form (SF)-36 vitality and social functioning (all p≤0.04). Both sexes had worse SF-36 scale scores than the general population. Women reported more absenteeism (work time missed) and activity impairment. TNFi trough levels, neutralizing antibodies and calprotectin were similar across sexes. A similar total number of comorbidities was seen. Self-reported hypothyroidism was more frequent in women. Men had higher 10-year calculated risk of fatal cardiovascular events., Conclusion: Important differences in disease burden between men and women were seen. More attention to sex differences in the follow-up of IA patients is warranted., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: [Brigitte Michelsen: Grant/research support from Novartis paid to employer. Grant/research support paid to employer from Pfizer. Kristine Thomassen Berget: None; Jon Håvard Loge: None; Arthur Kavanaugh: None, Glenn Haugeberg: Unrestricted grant from Pfizer.]

Background: A major depressive episode (MDE) is typically self-rated by screening forms identifying probable MDE (pMDE). This population-based cross-sectional questionnaire study examined the prevalence rates of pMDE identified by the PHQ-9 screener in long-term survivors of childhood and adolescence (CACSs) and young adult cancer (YACSs) and a normative sample (NORMs)., Methods: Data from 488 CACSs, 1202 YACSs, and 1453 NORMs were analyzed, and pMDE was defined both by cut-off ≥10 on the total PHQ-9 score and by an algorithm., Results: The prevalence rates of pMDE among CACSs were 21.5%, 16.6% in YACSs, and 9.2% among NORMs using the cut-off definition. With the algorithm, the prevalence rates of pMDE were 8.0% among CACSs, 8.1% among YACSs, and 3.9% among NORMs. Independent of definition, CACSs and YACSs had significantly increased prevalence rates of pMDE compared to NORMs. Psychosocial factors and self-rated health were significantly associated with both definitions of pMDE in multivariable analyses, while survivor groups, cancer types, and adverse events were not., Conclusion: Since pMDE has negative health consequences and is amenable to treatment, healthcare providers should be attentive and screen for pMDE in young cancer survivors. For PHQ-9, the preferred type of definition of pMDE should be determined.

Purpose: The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS., Methods: Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0-18 years old, excluding CNS), breast cancer (BC, stages I-III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19-39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors., Results: Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model., Conclusions: The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

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.

Background: Population-based reference data on frequently used questionnaires are important for comparative purposes. Due to changes in health and lifestyles, such data should be updated every other decade. The objectives of this study were to establish Norwegian population-based reference data on the Fatigue Questionnaire (FQ) and the Patient Health Questionnaire-9 (PHQ-9) on depression, to compare the FQ-scores with our previous reference data from 1996, and to explore the relationship between the scores on these two instruments., Methods: In 2015, a representative sample of 6,012 Norwegians aged 18-80 years was mailed a questionnaire including the FQ and the PHQ-9, and 36% responded. Complete FQ-scores were delivered by 2,041 subjects, and complete PHQ-9 scores by 2,086 subjects. The scores are displayed according to sex and 10-year age groups., Results: Few 2015 mean scores of mental, physical, and total fatigue differed significantly from those of 1996, and the same was found for the prevalence rates of chronic fatigue. The exception was a significantly lower prevalence in 2015 of mean fatigue scores and prevalence of chronic fatigue in females ≥ 60 years. The prevalence of major depressive episode (MDE) based on the PHQ-9 sum score cut-off ≥ 10 was 5.9% for males and 9.8% for females, and 2.5% and 3.8% using a DSM-based algorithm with at least five endorsed criteria including either anhedonia or depressed mood. The correlation between the FQ and the PHQ-9 was 0.59, implying 36% shared variance., Conclusions: This study showed considerable interrelationship between the FQ and the PHQ-9 constructs. The reference data show that scores on the FQ have only improved significantly in persons aged 60 or more years between 1996 and 2015. Our prevalence findings of MDE based on the PHQ-9 are in accordance with the findings from other countries. The FQ and the PHQ-9 should be used together in epidemiological and clinical studies., Competing Interests: Competing interestsThe authors declare that they have no competing interests., (© The Author(s) 2020.)

Background: Implementation of integrated oncology and palliative care improves patient outcomes but may represent a demanding task for health care providers (HCPs). Objective: To explore physicians' and nurses' perceived challenges and learning needs in their care for patients with advanced cancer, and to analyze how these perceptions can provide insight on how to improve care for patients with advanced cancer in an integrated care model. Methods: Residents in oncology, oncologists, nurses, and palliative care physicians were recruited to participate in focus group interviews. Six focus group interviews were conducted with 35 informants. Data were analyzed according to principles of thematic analysis. Results: The discussions in the interviews concerned three broad themes: an emphasis on patients' best interest, perceived as hindered by two sets of barriers; unsatisfactory organizational conditions such as time pressure, lack of referral routines, and few arenas for interdisciplinary collaboration, was perceived as one barrier. The other barrier was related to the appraisal of other HCPs' clinical practices. Participating HCPs expressed in general a positive self-view, but were more critical of other HCPs. Conclusion: Currently, implementation of measures to improve care for patients with advanced cancer appears to be challenging due to cultural and organizational factors, and how HCPs perceive themselves and other HCPs. HCPs' perception of challenges in patient care as not related to themselves (externalization) might be an essential obstacle. Interventions targeting both HCP-related and organizational factors are needed. Particularly important are measures aimed at reducing fragmentation and improving collaboration in care., Competing Interests: No competing financial interests exist., (© Tonje Lundeby et al. 2020; Published by Mary Ann Liebert, Inc.)

Background: Patients´ own perceptions and evaluations of symptoms, functioning and other health-related factors, i.e. Patient Reported Outcomes (PROs), are important elements for providing good patient care. Symptoms are subjective and best elicited by the patient orally or by using PRO measures (PROMs), be it on paper, or as electronic assessment tools. Reference values on frequently used PROMs facilitate the interpretation of scores for use in clinics and research settings, by comparing patient data with relevant samples from the general population. Study objectives were to (1) present reference values for the M.D. Anderson Symptom Inventory (MDASI) (2) examine the occurrence and intensity of symptoms assessed by the MDASI in a general Norwegian adult population sample, and (3) examine factors associated with higher symptom burden defined as the sum score of all symptoms, and factors associated with symptoms` interference on functions., Methods: In 2015, MDASI was sent by mail as part of a larger survey, to a representative sample of the general Norwegian adult population (N = 6165). Medical comorbidities were assessed by the Self-Administered Comorbidity Questionnaire. Depression was self-reported on the Patient Health Questionnaire 9 (PHQ-9). Linear multivariable regression analysis was used to examine for factors associated with MDASI sum score and factors associated with symptoms' interference on functions., Results: The response rate was 36%. More women (54%) than men (46%) responded. Mean age was 55 years (SD 14). The most frequent symptoms were fatigue (59.7%), drowsiness (56.2%) and pain (56.1%). Fatigue, pain and disturbed sleep had the highest mean scores. The presence of one or more comorbidities, increasing PHQ-9 score and lower level of education were associated with higher MDASI sum score (p < 0.001). The MDASI sum score and the PHQ-9 score were positively associated with all interference items (p < 0.001) except for walking (p = 0.22)., Conclusion: This study provides the first Norwegian reference values for MDASI. The presence of one or more comorbidities, higher level of depressive symptoms and lower level of education were significantly associated with higher MDASI sum score. These covariates must be controlled for when using the reference values.

Increasing numbers survive cancers in childhood and adolescence. Long-term survivors of cancers in adulthood have increased prevalence of pain and consumption of analgesics. It is not established whether long-term survivors of cancers in childhood and adolescence also have an increased use of analgesics. However, based on increased use of antidepressants and anxiolytics in long-term survivors of cancers in childhood and adolescence, we hypothesized that this group also had increased use of analgesics. Based on data from the 2 nationwide registers, the Cancer Registry of Norway and the Norwegian Prescription Database, a cohort of 5585 (52% males) long-term survivors of cancers in childhood, adolescence, and early adult life was established. Age- and sex-adjusted comparisons were made to the general population. The age-adjusted one-year periodic prevalence of receiving prescriptions of opioids, benzodiazepines, and benzodiazepine-related hypnotics in the study population was increased by 20% to 50%, and the one-year periodic prevalence of receiving prescriptions of gabapentinoids was approximately increased 2-fold compared to the general population. For paracetamol and nonsteroidal anti-inflammatory drugs, no difference was found. For those survivors, who were persistent or high-dose users of opioids, comedication with high doses of benzodiazepines and/or benzodiazepine-related hypnotics was far more common than among persistent and high-dose opioid users in the general population. The high prevalence of gabapentinoids may indicate increased prevalence of neuropathic pain in this group. The high degree of comedication with benzodiazepines and/or benzodiazepine-related hypnotics in survivors on persistent and high-dose opioids might be an indication of problematic opioid use or addiction.

Background: Several publications have addressed the need for a systematic integration of oncological care focused on the tumor and palliative care (PC) focused on the patient with cancer. The exponential increase in anticancer treatments and the high number of patients living longer with advanced disease have accentuated this. Internationally, there is now a persuasive argument that introducing PC early during anticancer treatment in patients with advanced disease has beneficial effects on symptoms, psychological distress, and survival., Methods: This is a national cluster-randomized trial (C-RCT) in 12 Norwegian hospitals. The trial investigates effects of early, systematic integration of oncology and specialized PC in patients with advanced cancer in six intervention hospitals compared with conventional care in six. Hospitals are stratified on the size of local catchment areas before randomization. In the intervention hospitals, a three-part complex intervention will be implemented. The backbone of the intervention is the development and implementation of patient-centered care pathways that contain early, compulsory referral to PC and regular and systematic registrations of symptoms. An educational program must be completed before patient inclusion. A total of 680 patients with advanced cancer and one caregiver per patient are included when patients come for start of last line of chemotherapy, defined according to national treatment guidelines. Data registration, clinical variables, and patient- and caregiver-reported outcomes take place every 2 months for 1 year or until death. The primary outcome is use of chemotherapy in the last 3 months of life by comparing the proportion of patients who receive this in the intervention and control groups. Primary outcome is use of chemotherapy in the last 3 months before death, i.e. number of patients. Secondary outcomes are initiation, discontinuation and number of cycles, last 3 months of life, administration of other medical interventions in the last month of life, symptom burden, quality of life (QoL), satisfaction with information and follow-up, and caregiver health, QoL, and satisfaction with care., Discussion: Results from this C-RCT will be used to raise the awareness about the positive outcomes of early provision of specialized palliative care using pathways for patients with advanced cancer receiving medical anticancer treatment. The long-term clinical objective is to integrate these patient-centered pathways in Norwegian cancer care. The specific focus on the patient and family and the organization of a predictable care trajectory is consistent with current Norwegian strategies for cancer care., Trial Registration: ClinicalTrials.gov, NCT03088202. Registered on 23 March 2017.