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PURPOSE: This study aimed at expanding the knowledge of nausea in patients with advanced cancer by elucidating (a) the prevalences of patients having nausea, experiencing nausea as a problem, and having a need for help with their nausea, respectively, (b) determining variables associated with nausea, and (c) investigating the relation between nausea and the need for help regarding nausea.METHODS: In 2004-2006, the EORTC QLQ-C30 and the Three-Levels-of-Needs Questionnaire (3LNQ) were mailed to 2364 patients with advanced cancer who had been in contact with one of the 54 hospital departments within the past year. Further information was collected from medical records.RESULTS: Patient-response rate was 61%. Twenty-two percent reported having had some degree of nausea within the past week, with a mean nausea score of 10.4 and a two-item combined nausea and vomiting score of 7.5 (0-100, 100 = "very much"). Factors associated with nausea on the multivariate level were contact type (inpatient/outpatient) and treatment status (receiving ongoing oncologic treatment yes/no). "Nausea intensity" and "nausea problem burden" showed acceptable abilities to distinguish between patients having or not having an unmet need for help regarding nausea with areas under the curve (AUCs) of 0.81 and 0.82, respectively.CONCLUSIONS: Around one in four patients with advanced cancer reported nausea within the past week, highest in patients who were inpatients or undergoing active oncologic treatment. Almost all patients reporting nausea on the EORTC QLQ-C30 experienced this to be a problem, and the 3LNQ can therefore be restricted to cases where additional details are needed.

BACKGROUND: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal.AIM: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments.SETTING/PARTICIPANTS: The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival.RESULTS: Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect.CONCLUSION: We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Advance care planning (ACP) is a discussion between an incurably ill patient, a healthcare professional and if possible, a relative about preferences for end-of-life care, and ACP may improve the communication in this situation. However, in the Danish healthcare system there is no formalized and systematically used standard procedure for discussions with patients about their knowledge of their treatment options, values and preferences. In this article we review the concept of ACP, including definition, experiences from abroad and the status of ACP in Denmark.

BACKGROUND: Patient empowerment (PE) may be defined as the opportunity for patients to master issues important to their own health. The aim of this study was to conceptualize PE and how the concept manifests itself for cancer patients attending follow-up, in order to develop a relevant and sensitive questionnaire for this population.MATERIAL AND METHODS: A theoretical model of PE was made, based on Zimmerman's theory of psychological empowerment. Patients who were in follow-up after first line treatment for their cancer (n = 16) were interviewed about their experiences with follow-up. A deductive thematic analysis was conducted to contextualize the theory and find concrete manifestations of empowerment. Data were analyzed to find situations that expressed empowerment or lack of empowerment. We then analyzed what abilities these situations called for and we further analyzed how these abilities fitted Zimmerman's theory.RESULTS: In all, 16 patients from two different hospitals participated in the interviews. PE in cancer follow-up was conceptualized as: (1) the perception that one had the possibility of mastering treatment and care (e.g. the possibility of 'saying no' to treatment and getting in contact with health care when needed); (2) having knowledge and skills regarding, for example treatment, care, plan of treatment and care, normal reactions and late effects, although knowledge and information was not always considered positively; and (3) being able to make the health care system address one's concerns and needs and, for some patients, also being able to monitor one's treatment, tests and care.CONCLUSION: We conceptualized PE based on Zimmerman's theory and empirical data to contextualize the concept in cancer follow-up. When developing a patient reported outcome measure measuring PE for this group of patients, one needs to be attentive to differences in wishes regarding mastery.

BACKGROUND: There is an increased attention to and demand for patient empowerment in cancer treatment and follow-up programs. Patient empowerment has been defined as feeling in control of or having mastery in relation to cancer and cancer care. This calls for properly developed questionnaires assessing empowerment from the user perspective. The aim of this review was to identify questionnaires and subscales measuring empowerment and manifestations of empowerment among cancer patients.MATERIALS AND METHODS: We conducted a systematic search of the PubMed, PsycINFO and CINAHL databases. Empowerment and multiple search terms associated with empowerment were included. We included peer-reviewed articles published in English, which described questionnaires measuring empowerment or manifestations of empowerment in a cancer setting. In addition, the questionnaire had to be a patient-reported outcome measure for adult cancer patients.RESULTS: Database searches identified 831 records. Title and abstract screening resulted in 482 records being excluded. The remaining 349 full text articles were retrieved and assessed for eligibility. This led to the inclusion of 33 individual instruments measuring empowerment and manifestations of empowerment. Of these, only four were specifically developed to measure empowerment, and two were originally developed for the cancer setting, whereas the remaining two were developed elsewhere, but adapted to the cancer setting. The other 29 questionnaires were not intended to measure the concept of empowerment, but focused on patient-centered care, patient competence, self-efficacy, etc. However, they were included because part of the instrument (at least five items) was considered to measure empowerment or manifestations of empowerment.CONCLUSION: Our study provides an overview of the available questionnaires, which can be used by researchers and practitioners who wish to measure the concept of empowerment among cancer patie

PURPOSE: To explore (1) the information obtained from related but conceptually different approaches to pain assessment and (2) the extent to which the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) can be used as a screening tool to predict patient-reported need for pain relief.METHODS: Cancer patients randomly sampled from 56 hospital departments were included. Questionnaire items assessed patients' (a) pain experience using the EORTC QLQ-C30 pain scale and its two pain items separately (pain intensity and pain interference) and (b) pain burden and (c) need for pain relief using the Three-Levels-of-Needs Questionnaire (3LNQ).RESULTS: Of the 2364 patients contacted by mail, 1447 (61 %) completed the questionnaires. Among these, 51 % reported at least "a little" pain on the pain intensity item. The number of patients reporting pain to be a burden was similar, and pain experience and pain burden were highly correlated (correlation coefficients ranged from 0.85 to 0.91). Pain experience and pain burden were moderately correlated with the need for pain relief. A receiver-operating characteristic (ROC) curve analysis showed that the EORTC QLQ-C30 discriminated between patients with and without a need for pain relief to an acceptable degree (area under the curve (AUC) 0.73-0.77). The cut-point a little gave a sensitivity of 84 % and specificity of 59 % for the item "Have you had pain?" and a sensitivity of 72 % and a specificity of 72 % for the pain scale.CONCLUSIONS: The majority of patients who experienced pain felt it to be a problem. Pain experience and pain burden were substantially related to need for pain relief, and the latter could be predicted from the EORTC QLQ-C30.

BACKGROUND: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life.METHODS/DESIGN: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators.DISCUSSION: Transferring the concept of

BACKGROUND: Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialized palliative care (SPC) could offer improvements. The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer will benefit from being referred to 'early SPC'. DanPaCT is a multicenter, parallel-group, superiority clinical trial with 1:1 randomization. The planned sample size was 300 patients. The primary data collection for DanPaCT is finished. To prevent outcome reporting bias, selective reporting, and data-driven results, we present a detailed statistical analysis plan (SAP) for DanPaCT here.RESULTS: This SAP provides detailed descriptions of the statistical analyses of the primary and secondary outcomes in DanPaCT. The primary outcome is the change in the patient's 'primary need'. The 'primary need' is a patient-individualised outcome representing the score of the symptom or problem that had the highest intensity out of seven at baseline assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Secondary outcomes are the seven scales that are represented in the primary outcome, but each scale evaluated individually for all patients, and survival. The detailed description includes chosen significance levels, models for multiple imputations, sensitivity analyses and blinding. In addition, we discuss the patient-individualized primary outcome, blinding, missing data, multiplicity and the risk of bias.CONCLUSIONS: Only few trials have investigated the effects of SPC. To our knowledge DanPaCT is the first trial to investigate screening based 'early SPC' for patients with metastatic cancer from a broad spectrum of cancer diagnosis.TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT01348048 (May 2011).

Advanced cancer patients experience considerable symptoms, problems, and needs. Early referral of these patients to specialised palliative care (SPC) could improve their symptoms and problems.The Danish Palliative Care Trial (DanPaCT) investigates whether patients with metastatic cancer, who report palliative needs in a screening, will benefit from being referred to 'early SPC'.

To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.

The aim of the study was to investigate the adequacy of help delivered by the healthcare system for 12 symptoms/problems in a national, randomly selected sample of advanced cancer patients in Denmark.

The aims of this study were to assess how communication with health care staff is perceived by Danish cancer patients and to characterise those patients who report problems in communication.

The aims of this paper were to validate four items assessing how patients' needs regarding support to and from their relatives are met and to investigate patients' evaluation of this support.

The number of cancer survivors is growing and cancer is now viewed as a chronic disease. This has highlighted the importance of providing adequate rehabilitation to prevent physical, psychological, and social sequelae of cancer. However, it is unclear whether those in need of rehabilitation are offered this.

Background. Cancer care usually involves several health professionals from different parts of the health care system. Often, the GP has an important role. Patients’ experiences of continuity and support may be related to characteristics of health care, disease or patients. Objectives. To investigate Danish cancer patients’ experiences of their contact to the GP and the cooperation between the GP and the hospital. Methods. A national cross-sectional questionnaire study in three representative counties of Denmark. Based on a review of medical records from all hospital departments treating cancer patients, a random sample of 1490 patients completed a validated questionnaire regarding patient experiences. A mixed methods approach was applied. Associations between patient experiences and background variables were analysed in ordinal logistic regression models and patients’ written comments were analysed qualitatively. Results. One-third of the patients evaluated the cooperation between hospitals and primary care as suboptimal. Younger patients and patients from the capital Copenhagen were most dissatisfied. A third had needed support from their GP, and 41% of these patients had not fully received what they needed. Older patients, patients in Stage 1 and patients from surgical departments were least likely to have needed their GP’s support. Patients described support from the GP as empathic behaviour and help with coordinating health services. Conclusions. A substantial number of cancer patients experienced suboptimal cross-sectorial cooperation and supportive care. Efforts to improve cancer care cooperation may focus on the possible supportive role of the