Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study).

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.

Prescriptions of analgesics during complete disease trajectories in patients who are diagnosed with and die from cancer within the five-year period 2005-2009.

BACKGROUND: Even though validation studies of the WHO analgesic ladder have indicated that the simple approach of the analgesic ladder can provide adequate pain control in most patients, prevalence studies have documented a high prevalence of pain in cancer patients. Little is known about how analgesics are actually prescribed for cancer pain. The aim of the study was to study prescriptions of analgesics during the entire disease trajectory in patients dying from cancer within five years of diagnosis. METHODS: Complete national data from the Norwegian Cancer Registry, the Norwegian Prescription Database, the Cause of Death Registry and Statistics Norway were used to study prescriptions of analgesics in a complete study population of all patients dying from cancer within five years of diagnosis in Norway from 2005 to 2009. RESULTS: Of a total of 10,977 subjects who received prescriptions for analgesics between diagnosis and death, 56% started analgesic treatment at step I of the analgesic ladder, 29% started at step II and 14% started at step III. Of the patients starting at step I, 28% continued to step II, 37% bypassed step II and moved directly to step III whereas the remaining 35% remained at step I. Approximately 60% received one or more dispensed prescription of a step III analgesic during the disease trajectory, whereas nearly 20% remained at step I and 20% at step II respectively. CONCLUSION: The study indicates that clinicians seem to individually tailor analgesic treatment instead of applying the stepwise approach in the WHO analgesic ladder. SIGNIFICANCE: Complete national data covering the complete disease trajectory in cancer patients dying within five years of diagnosis. The majority of patients do not receive treatment in concordance with the stepwise approach suggested by the WHO analgesic ladder.

Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors.

OBJECTIVE: To explore practices regarding communication about emotional concerns in follow-up consultations with adolescent cancer survivors and pediatrician. METHOD: Seven video-taped follow-up consultations with adolescent survivors which contained many examples of emotional cues and concern were analyzed according to principles of conversation analysis. RESULTS: During talk about emotional concerns, a task-focused asymmetric pattern of pediatrician questions and patient responses was most often upheld. In a number of cases a gradual build-up of emotional expression from a weak hint to a more explicit expression of emotional concern was observed, often facilitated by the pediatricians. Most often work-up was relatively brief, sometimes with a brief positive reappraisal, but more comprehensive elaboration was also seen. Topic shifts were often abrupt. CONCLUSION: Pediatricians and patients used some of the same conventions as in everyday conversation during emotional talk in medical encounters. We observed shifts between informal talk and a typical task-focused mode. Conscious attention to such shifts and to the sequential nature of emotional talk could be helpful for doctors in designing their responses to patients' emotional concerns. PRACTICE IMPLICATIONS: Our findings may contribute to insight in how clinicians respond to emotional concerns in follow-up consultations and have implications for communication skills training.

Depression in advanced cancer--assessment challenges and associations with disease load.

BACKGROUND: Patients with advanced cancer commonly experience multiple somatic symptoms and declining functioning. Some highly prevalent symptoms also overlap with diagnostic symptom-criteria of depression. Thus, assessing depression in these patients can be challenging. We therefore investigated 1) the effect of different scoring-methods of depressive symptoms on detecting depression, and 2) the relationship between disease load and depression amongst patients with advanced cancer. METHODS: The sample included 969 patients in the European Palliative Care Research Collaborative-Computer Symptom Assessment Study (EPCRC-CSA). Inclusion criteria were: incurable metastatic/locally advanced cancer and ≥ 18 years. Biomarkers and length of survival were registered from patient-records. Depression was assessed using the Patient Health Questionnaire (PHQ-9) and applying three scoring-methods: inclusive (algorithm scoring including the somatic symptom-criteria), exclusive (algorithm scoring excluding the somatic symptom-criteria) and sum-score (sum of all symptoms with a cut-off ≥ 8). RESULTS: Depression prevalence rates varied according to scoring-method: inclusive 13.7%, exclusive 14.9% and sum-score 45.3%. Agreement between the algorithm scoring-methods was excellent (Kappa = 0.81), but low between the inclusive and sum scoring-methods (Kappa = 0.32). Depression was significantly associated with more pain (OR-range: 1.09-1.19, p < 0.001-0.04) and lower performance status (KPS-score, OR-range = 0.68-0.72, p < 0.001) irrespective of scoring-method. LIMITATIONS: Depression was assessed using self-report, not clinical interviews. CONCLUSIONS: The scoring-method, not excluding somatic symptoms, had the greatest effect on assessment outcomes. Increasing pain and poorer than expected physical condition should alert clinicians to possible co-morbid depression. The large discrepancy in prevalence rates between scoring-methods reinforces the need for consensus and validation of depression definitions and assessment in populations with high disease load.

Emotional concerns in follow-up consultations between paediatric oncologists and adolescent survivors: a video-based observational study.

OBJECTIVE: The present study aimed to explore (a) to what extent adolescent cancer survivors express emotional concerns during follow-up consultations, (b) the content of these expressions, and (c) the responses to their concerns by the paediatric haemato-oncologists (oncologists). METHODS: Sixty-six follow-up consultations between adolescent patients (aged 12-20 years old; mean = 16) and oncologists (n = 10) were video recorded. Emotional concerns were coded using the Verona coding definitions of emotional sequences (VR-CoDES). The content of the concerns was analysed using thematic analysis. RESULTS: Emotional concerns (n = 115) were identified in 50% of the consultations. Of the concerns, 87% were expressed implicitly as hints to the underlying emotion (cues) rather than explicitly (concerns). The oncologists elicited 66.9% of these expressions. Four main categories of emotional concerns were identified in the thematic analysis: physical (31%), psychological (29%), social (17%), and cancer related (23%). The majority (76.5%) of the oncologists' responses to the cues and/or concerns provided space for further disclosure. The oncologists responded less explicitly to the emotional aspects of physical and cancer-related issues in comparison with the cues or concerns of psychological origin. More cues and concerns were expressed when parents were not present in the consultation. CONCLUSIONS: In this study, almost half of the adolescent patients presented emotional concerns, and a subgroup presented many concerns; these were mainly expressed when initiated by the oncologists. Oncologists should therefore be attentive to hints to underlying emotions to help the adolescent bring forward his or her concerns.

Readability of informed consent documents (1987-2007) for clinical trials: a linguistic analysis.

We investigated the readability of informed consent documents linguistically and compared old and new ICDs. Twenty ICDs (ten from 1987-1992 and ten from 2006-2007) were included. The Evaluative Linguistic Framework (ELF) was used to analyze the texts. The ELF evaluates the following items: main themes, order of themes, rhetorical functions, the relationship between reader and writer, metadiscourse, headings, expert terminology, and visual aspects. An ICD is considered readable if it achieves the goal of inviting the reader to participate and explaining the implication of participation. The new ICDs were more readable than the old ones, as they were more oriented towards research, contained instructions about how to consent, and provided clear contact information. Aspects that reduced the readability of the new ICDs were the large number of topics, details, and actors presented. The readability of the old ICDs was enhanced by fewer topics, a clear presentation of the involved actors, and brevity. However, their readability was reduced by the inclusion of a vast amount of information about the reader's diagnosis and treatment.

Using the Mini-Mental State Examination to screen for delirium in elderly patients with hip fracture.

BACKGROUND: The main aim of this paper was to examine the usefulness of the Mini-Mental State Examination (MMSE) for screening delirium in elderly patients with hip fracture. METHODS: The sample included 364 elderly patients with hip fracture admitted to two hospitals in Oslo. Delirium was assessed by the Confusion Assessment Method (CAM) as an approximation of the gold standard, DSM-IV. To evaluate the psychometric properties of the MMSE scale, we used the Mokken nonparametric latent trait model for unidimensional scaling. RESULTS: In total, 76 (21%) patients were diagnosed with delirium based on the CAM, and 141 (43%) had preexisting cognitive impairment. As a screening tool, the recommended MMSE cut-point of 24 showed an acceptable sensitivity of 88% with a specificity of 54%. The prediction of delirium, based on logistic regression on the MMSE total score and on the 5 items selected by the stepwise logistic regression procedure, gave clearly less acceptable results. CONCLUSIONS: Our study indicates that the MMSE may be useful in screening for delirium, but the high percentage of false positives shows that it does not have diagnostic potential in patients with hip fracture.

Alterations of gene expression in blood cells associated with chronic fatigue in breast cancer survivors.

Fatigue is one of the most frequent complaints among breast cancer survivors. However, mechanisms underlying persisting fatigue after end of treatment are poorly understood. To explore whether biological processes underlying persistent fatigue can affect gene expression of blood cells, genome-wide expression analyses were performed on whole blood samples from breast cancer survivors classified as chronic fatigued 2-6 years after diagnosis. Non-fatigued survivors served as controls. Several gene sets involved in plasma- and B-cell pathways differed between the chronic fatigued and the non-fatigued, suggesting that a dysregulation in these pathways is associated with chronic fatigue and that a B-cell-mediated inflammatory process might underlie fatigue. The chronic fatigued also had a higher level of leucocytes, lymphocytes and neutrophiles compared with the non-fatigued, thus further indicating that an activation of the immune system plays a role in the biology of chronic fatigue in breast cancer survivors.

Pain in Parkinson's disease: Prevalence and characteristics.

Parkinson's disease is a chronic, progressive, incurable neurodegenerative disease. As the disease progresses, motor disturbances and non-motor symptoms represent considerable illness burdens. Symptom relief is the goal for the treatment. Pain is frequently observed in patients with Parkinson's disease, but its prevalence, characteristics and associations with Parkinson's disease are poorly documented. These were investigated in 176 home-living PD patients. They underwent a neurological examination and a structured interview for registration of pain characteristics in addition to responding to standardised questionnaires. Pain was reported by 146 (83%) patients. Compared to the general population, the Parkinson's disease patients experienced significantly more pain as measured by SF-36 Bodily Pain Scale. The average pain during the last 24h measured by the Brief Pain Inventory was 2.85. Fifty-three percent of the patients reported one, 24% reported two and 5% reported three pain types. Musculoskeletal pain was reported by 70%, dystonic pain by 40%, radicular-neuropathic pain by 20% and central neuropathic pain by 10%. Thirty-four percent were on analgesic medication. Pain was not associated with age, disease duration or severity of the disease; female gender was the only significant predictor of pain. Pain is frequent and disabling, independent of demographic and clinical variables except for female gender, and is significantly more common in Parkinson's patients compared to the general population. A minority of the Parkinson's disease patients with pain received analgesic medication. The findings call for improved attention to assessment and treatment of pain in the follow-up of Parkinson's disease patients.

The length of consent documents in oncological trials is doubled in twenty years.

BACKGROUND: The aim of the study was to investigate whether the length of informed consent documents (ICDs) for oncological trials have increased from 1987 to 2007 and analyze the content of the ICDs. DESIGN: In total, 87 ICDs from oncological trials approved by the Regional Committee for Medical and Health Research Ethics (REC) in the central region of Norway from 1987 to 2007 were analyzed. A list of 17 basic (fundamental medical and ethical aspects) and 30 formal (juridical aspects, financing, insurance and storage of data) content components was constructed based upon international and REC guidelines for ICDs. The number of words and presence of components were registered for all ICDs. RESULTS: The mean length of the ICDs increased from 338 (range 276-464) words in 1987-1990 to 1087 words (range 399-2345) in 2005-2007. The number of components increased from nine to 25 during the same period. Basic components increased steadily from seven in 1987-1989 to 14 in 2005-2007 while the components concerning formalities increased substantially from two to 11. CONCLUSIONS: The increased length of the ICDs is explained by an increased complexity of the documents and especially more information about formalities. This development increasingly demands competent readers and might prohibit truly informed consents.

Pain assessment tools in palliative care: an urgent need for consensus.

At present, there is no universally accepted cancer pain assessment tool for use in palliative care (PC). The European Palliative Care Research Collaborative (EPCRC), therefore, aims to develop an international consensus-based computerised pain assessment tool. As part of this process, we have performed (1) a literature review on pain assessment tools for use in the PC and (2) an international expert survey to gain information on the relevant dimensions for pain assessment in PC. 230 publications were identified, only six met the inclusion criteria. Three further articles were identified through manual searching, totalling 11 different pain assessment tools. Nine tools were multidimensional. Pain intensity was assessed in seven, using various numerical/verbal rating scales (NRS/VRS); five tools focused on pain management. Three publications did not identify the rationale for the need to develop a new tool, and the selection procedure for items/dimensions was not described in six tools. Patient and/or professional expert groups were involved in the development of five tools and only two tools were extensively validated or cross-culturally tested. Thirty-two experts (71%) completed the expert survey and identified 'intensity', 'temporal pattern', 'relief/exacerbation', 'pain quality' and 'location' as the five most relevant dimensions. Most preferred assessment of 'pain intensity' was by NRS rather than VRS. Time windows extending 24 h were regarded as less relevant. Development of PC pain assessment tools seems to be a continuous process, which does not adhere to systematic guidelines, thus does not contribute to a universally accepted tool. No tool contained all relevant dimensions as defined by the experts. Many tools focused on particular dimensions, suggesting that specific research interests may drive the tool development process. Extensive literature reviews, expert and patient input and clinical studies are a needed approach in the development of a new consensus-based pain assessment tool.

Methods for handling missing data in palliative care research.

Missing data is a common problem in palliative care research due to the special characteristics (deteriorating condition, fatigue and cachexia) of the population. Using data from a palliative study, we illustrate the problems that missing data can cause and show some approaches for dealing with it. Reasons for missing data and ways to deal with missing data (including complete case analysis, imputation and modelling procedures) are explored. Possible mechanisms behind the missing data are: missing completely at random, missing at random or missing not at random. In the example study, data are shown to be missing at random. Imputation of missing data is commonly used (including last value carried forward, regression procedures and simple mean). Imputation affects subsequent summary statistics and analyses, and can have a substantial impact on estimated group means and standard deviations. The choice of imputation method should be carried out with caution and the effects reported.

Drug addiction in hepatitis C patients leads to a lower quality of life.

The subjective health status of hepatitis C patients has been relatively poorly studied. By using the Short Form 36 (SF-36), health-related quality of life (HRQOL) was assessed in a group of 42 hepatitis C patients. In all nine scales examined, the scores were generally low, and present drug use and being single were associated with especially large reductions in HRQOL. Compared with the Norwegian norms, scores were lower across all nine scales and significantly lower in eight. The study showed that the hepatitis C patients had definite reductions in HRQOL, but the impairment could not be fully explained by their hepatitis. Different non-viral factors such as drug use and marital status significantly influenced the results. This underlines the importance of taking other factors into account when studying the health status of hepatitis C patients.

Health status of patients with ankylosing spondylitis: a comparison with the general population.

OBJECTIVE: To examine the subjective health in patients with ankylosing spondylitis (AS) compared with the general population, and to explore the associations between health status and age, sex of the patients, and educational level in AS. METHODS: Health status was assessed with a generic instrument (SF-36) in 314 patients with AS and in 2323 people from the general population. Subgroup analyses were performed according to age, sex, and educational level. Standard difference scores (s-scores) were calculated to ensure the clinical meaningfulness of the norm based comparisons. RESULTS: Both men and women with AS reported significantly impaired health on all scales of the SF-36. Women reported significantly worse health on physical health domains. However, when calculating differences from the general population, numerically larger s-scores were found for men (except for physical role and vitality). The relative impact of AS seems to diminish with increasing age. In AS, better health was significantly associated with higher education across all scales. Deviations from the general population on the non-physical health aspects were especially pronounced in patients with low education. CONCLUSIONS: All key dimensions of health are affected by AS. The physical aspects seem to be most severely affected, but in the less educated group of patients, the disease impact on the mental health aspects was also considerable. Evaluation and management planning should take the complexity of AS into consideration. The focus on physical function should be maintained, and additional attention should be paid to the mental and social consequences of AS.

A prospective study of health-related quality of life, fatigue, anxiety and depression 3-5 years after stem cell transplantation.

Health-related quality of life (HRQOL), fatigue and psychological distress were prospectively assessed in 248 cancer patients treated with allogeneic (SCT, N=61), or autologous (ASCT, N=69) stem cell transplantation or conventional chemotherapy (CT, N=118) of whom 128 completed the assessments after 3 years. The European Organization for Treatment and Research of Cancer Core Quality of Life Questionnaire and the Hospital Anxiety and Depression Scale were administered nine (SCT/ASCT groups) or seven times (CT group) during the first year. The Fatigue Questionnaire was added at the final assessment. The SCT group displayed greater changes from baseline scores than the ASCT group, with more symptoms in the first months post transplant. A gradual improvement was found in both groups during the following 4-6 months, before stabilizing at baseline levels. Only minor changes were observed after the first year. All groups reported more fatigue than the population values after 3 years (P<0.01). The ASCT group also reported less optimal HRQOL (P<0.01-0.0001). No differences were found in anxiety and depression. Despite a faster recovery during the first months after transplant, the ASCT patients reported poorer functioning and more fatigue compared to the SCT group after 3 years. This suggests a need for a closer follow-up of these patients with special emphasis on functional status and fatigue.

Physical exercise results in the improved subjective well-being of a few or is effective rehabilitation for all cancer patients?

Physical exercise as an intervention in cancer patients has attracted increasing interest. This review examines the published randomised controlled trials on physical exercise, during and after cancer treatment, focusing primarily on recruitment of patients, patient compliance, content of the intervention programmes and outcome measures. We performed systematic searches of PubMed, PsychInfo, Cancerlit and the Cochrane Library using the MESH terms exercise, neoplasms, cancer, rehabilitation and intervention. We identified 12 randomised trials with sample sizes ranging from 21 to 155 patients. Only four studies reported the number of patients assessed for eligibility and the reasons for exclusion; 15% to 30% of patients assessed for eligibility were randomised into the intervention programmes. Drop-out rates in the trials ranged from 0% to 34%. Most studies included female breast cancer patients (nine studies, 62% of total number of patients). Interventions included aerobic exercise training (10 studies) and resistance exercise (two studies). The studies used a wide range of instruments to assess health-related quality of life (HRQOL) and the physical exercise capacity. The studies indicated promising effects on both physiological and psychological outcomes. Randomised clinical studies are few, small in scope, and mainly focus on breast cancer patients. Complete knowledge about the type of physical exercise most beneficial for patients at different stages of the disease progression is still lacking. Future work should identify fewer and more specific endpoints.

Exercise reduces fatigue in chronic fatigued Hodgkins disease survivors--results from a pilot study.

The aims of this pilot study were to compare aerobic capacity in non-fatigued and fatigued Hodgkin's disease survivors (HDS) and to assess the feasibility of an exercise-programme and its effects upon fatigue, physical functioning and aerobic capacity in chronic fatigued HDS. 53 HDS (85%) of originally 62 survivors treated at the Trondheim University Hospital in the period 1987-1997 completed a questionnaire including the Fatigue Questionnaire (FQ). 18 subjects were identified with chronic fatigue. 15 non-fatigued HDS matched for gender and age were drawn as controls. Both groups were invited to medical examination and exercise tests. All 15 fifteen non-fatigued HDS showed up to the medical examination. 12 of the 18 patients with chronic fatigue completed the tests and nine agreed to enter a home-based exercise intervention. Outcome measures were aerobic capacity, fatigue and physical functioning. No significant difference in aerobic capacity was found between the chronic fatigued HDS and the controls. Fatigue, physical functioning and maximal aerobic capacity were significantly improved after the intervention. Aerobic exercise had a positive effect upon chronic fatigue in HDS. However, the study is a pilot study and needs confirmation in a larger group of subjects. The intervention was well accepted, and the majority of the patients adhered to the programme.

Quality of life in advanced cancer patients: the impact of sociodemographic and medical characteristics.

Population-based surveys have shown that health-related quality of life (HRQL) is influenced by patients' characteristics such as age, gender, living situation and diagnoses. The present study explores the impact of such factors on the HRQL of severely ill cancer patients. The study sample included 395 cancer patients who participated in a cluster randomised trial of palliative care. Median survival was 13 weeks. HRQL assessments (using the EORTC QLQ-C30 questionnaire) were compared among subgroups of relevant patients' characteristics (ANOVA), and the significance of individual covariates was explored by multivariate linear regression. Most EORTC QLQ-C30 scores showed minor differences between genders. Higher age was associated with less sleeping disturbance, less pain and better emotional functioning. No positive impact of living with a partner was found. Performance status and/or time from assessment to death were significantly associated with most functioning and symptom scores. We concluded that although the overall impact of sociodemographic characteristics may seem less important to HRQL scores among advanced cancer patients than in general populations, age and gender should be allowed for. Performance status and closeness to death also need to be reported.

The self-perceived health status of Norwegian physicians compared with a reference population and foreign physicians.

AIMS: To compare the self-perceived health status of a representative sample of Norwegian physicians with a general reference population; and to investigate differences in health status among groups of physicians. METHODS: A cross-sectional postal survey was carried out of 1,126 Norwegian physicians and 1,742 subjects in a general reference population, using the widely used general health status questionnaire--Short Form 36 (SF-36). Scores were adjusted for differences in age, gender and education where applicable. RESULTS: The health status of Norwegian physicians was better than that of subjects with a lower level of education in the four dimensions of the SF-36 related to physical health. Male physicians scored better on the physical functioning scale and lower on vitality and social functioning than comparable university graduates. Older physicians scored better than younger in dimensions related to mental health and social functioning. Norwegian general practitioners reported better health status than colleagues in Sweden and the UK. CONCLUSIONS: The self-perceived health status of Norwegian physicians was as good or better than that of the general population. The cross-national differences could be caused by cultural differences, or be related to practice style or job strain.