Self-efficacy of advanced cancer patients for participation in treatment-related decision-making in six European countries: the ACTION study.

PURPOSE: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. METHODS: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. RESULTS: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B -7.50 (95% CI -13.04 to -1.96)) than those in Belgium. CONCLUSION: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes.

Sexual health and closeness in couples coping with advanced cancer: Results of a multicenter observational study (eQuiPe).

BACKGROUND: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners. AIM: To assess the association between sexual health and closeness in the relationship in couples coping with advanced cancer. DESIGN: This study was part of a prospective multicentre longitudinal observational cohort study on experienced quality of care and quality of life in patients with advanced cancer and their relatives (eQuiPe). SETTING/PARTICIPANTS: Baseline data regarding sexual health and closeness in people with advanced cancer and their partners. RESULTS: Out of the 566 dyads, 14 were same-sex couples. Especially male partners showed an interest in sex, but more than half of all patients and partners were not sexually active. Approximately one third experienced sexual dysfunction to be a problem but did not seek specialized support (<10%). There was a positive association between own sexual satisfaction and feelings of closeness in the relationship, which was stronger for partners compared to patients (p < 0.001). Sexual satisfaction of the other person was also related to own feelings of closeness (p = 0.003). CONCLUSIONS: Couples coping with advanced cancer clearly face challenges regarding sexual health but are not likely to seek specialized support. When discussing sexual health, it is crucial that health care professionals pay attention to the aspects of sexual health that may contribute to feeling close to each other and suggest specialized care if necessary. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Promoting health equity in the health-care system: How can we identify potentially vulnerable patients?

BACKGROUND: There is documented social inequality in cancer. The health-care system may contribute to health equity by targeting interventions to potentially vulnerable patients who may be at risk of not receiving optimal treatment and care. AIM: This study aimed to develop and pilot test a tool to identify patients who may need additional support. METHOD: The study took place in a department of palliative medicine and in a team for head and neck cancer within an oncology department. The tool to identify potentially vulnerable patients was developed based on literature reviews and interviews with patients and health-care personnel. It was pilot tested in a six-month period, with subsequent interviews with health-care personnel. RESULTS: In total, 212 consecutive patients referred to the departments were systematically screened with the tool by health-care personnel. Of these, 74 (35%) patients were considered potentially vulnerable. The most frequently reported sign of vulnerability was 'few supportive relations' (47% of the vulnerable patients). Most health-care personnel found it relevant to focus systematically on these patients. However, some were concerned that using the tool could prove to be stigmatising and were critical of attributing the vulnerability to the individual. CONCLUSIONS: Most patients were considered in need of additional support because they lacked a social network or had difficulties communicating with health-care personnel. Applying a tool to identify potentially vulnerable patients was feasible and increased attention to this group of patients. However, the screening procedure was also questioned.

Perceptions of person-centred care in two large university hospitals: A cross-sectional survey among healthcare professionals.

BACKGROUND: Patient-centred care (PCC) including collaborative practices is the core component of modern health care. Despite this, it has proven difficult to implement. AIMS: To examine (1) healthcare professionals' (HCPs') perception of whether they perceive a PCC culture, their attitudes towards involving patients in decisions and their experiences of barriers for PCC; and (2) variables that may contribute to explain differences in perceived person-centred culture. METHODS: A questionnaire survey of HCPs from 27 different departments from two university hospitals in Denmark. HCPs were eligible if they held a profession as physician, Registered Nurse, nurse assistant, physiotherapist, occupational therapist, dietician, midwife or psychologist and excluded if they reported not being involved in patient treatment and care. The questionnaire consisted of four items from the Context Assessment Index (CAI). The remaining items were purpose-designed. RESULTS: In total 1140 (24% response rate) HCPs completed the questionnaire and were included in the analyses. Most of the HCPs perceived a culture of PCC (e.g. 91% agreed or agreed to a high degree that patients were provided with opportunities to participate in decisions). Most HCPs also held positive attitudes towards involving patients in decisions. Time and prioritisation from the management were perceived as barriers for PCC, and many HCPs also believed that involving patients in decisions could be difficult for the patients. The HCPs who were least involved in treatment and care, and working in the acute setting or in surgery, were least likely to perceive a PCC culture. HCPs with the longest or shortest educations, and HCPs working primarily with outpatients or with planned inpatients, were most likely to perceive a person-centred culture. CONCLUSION: The HCPs generally perceived a culture of PCC and held positive attitudes towards involving patients in decisions. To further promote PCC, time and prioritisation must be invested at an organisational level.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Exploratory analyses of the Danish Palliative Care Trial (DanPaCT): a randomized trial of early specialized palliative care plus standard care versus standard care in advanced cancer patients.

BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials. OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT). METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve. RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item 'overall satisfaction with the help received from the health care system' with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05). CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group. TRIAL REGISTRATION: NCT01348048.

Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up.

PURPOSE: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up. METHODS: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up. RESULTS: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated. The final version consists of 67 items, covering three different dimensions of empowerment: (A) empowerment outcomes consisting of three components: (A1) the intrapersonal-, (A2) interactional-, and (A3) behavioral component, (B) empowerment facilitators (enablement), and (C) the value of empowerment. CONCLUSIONS: This study documents the theoretical and empirical basis for the development of the CPEQ and its content validity. The CPEQ provides a tool for researchers to assess the level of, desire for, and enablement of empowerment among cancer patients. The next steps will be to use the CPEQ in a nationwide study of empowerment in cancer follow-up and subsequently shorten the CPEQ based on psychometric methods in order to make it more relevant in clinical studies.

There's Nothing Broken. You've Had a Whiplash, That's It: A Qualitative Study of Comorbid Posttraumatic Stress Disorder and Whiplash Associated Disorders.

BACKGROUND: Posttraumatic stress disorder (PTSD) symptoms are common in chronic Whiplash associated disorders (WAD) and have been found to be associated with higher levels of pain and disability. Theoretical frameworks have suggested that PTSD and pain not only coexist, but also mutually maintain one another. Although the comorbidity has been subject to increasing quantitative research, patients' experiences of the comorbidity and symptom interaction remain largely uninvestigated using qualitative methods. OBJECTIVE: The present study set out to explore the potential relationship of PTSD and pain in people with WAD and properly assessed PTSD after motor vehicle accidents. METHODS: A qualitative explorative study of eight individual face-to-face semistructured interviews were conducted. Interviews were recorded and transcribed verbatim and analyzed using framework analysis. RESULTS: Through the analysis, we developed three overarching themes. The first theme illustrated the complex and burdensome comorbidity with overlapping and transdiagnostic symptoms, whereas the second theme highlighted how several circumstances, some related to the health care system, could extend and amplify the traumatic response. The final theme illustrated symptom associations and interactions, particularly between pain and PTSD, both supporting and rejecting parts of the mutual maintenance framework. CONCLUSIONS: These findings underlined the great complexity and variability of the comorbidity and the traumatic event, but also emphasized how experiences of psyche and soma seem closely connected in these patients. The results provide support for the importance of thorough assessment by multidisciplinary teams, minimizing distress post-injury, and a critical approach to the idea of mutual maintenance between pain and PTSD.

Prevalence and possible predictors of sexual dysfunction and self-reported needs related to the sexual life of advanced cancer patients.

Background: Sexual dysfunction and problems are common late effects after treatment of cancer. However, little is known about the prevalence and risk factors for sexual dysfunction in patients with advanced cancer. The aim of this study was to investigate the prevalence and predictors of sexual problems and needs in a large sample of Danish patients with advanced cancer. Methodology: The data derived from a representative cross-sectional study of patients with advanced cancer. Patients who had been in contact with 1 of 54 hospital departments were invited to fill out a questionnaire on symptoms and problems. Five items asked about sexuality. Ordinal logistic regression was used to identify variables associated with sexual functioning in explorative analyses. Results: A total of 1,447 patients completed the questionnaire and of those, 961 patients (66%) completed the sexuality items. More than half of the patients (60%) had not been sexually active within the previous month, despite a high prevalence of desire for sexual intimacy (62%). More than half of the patients (57%) experienced that their physical condition or treatment had impaired their sex life. Of those, 52% experienced an unmet need for help with sexual problems from the health care system. Older patients were less likely to report sexual problems than younger patients. Having prostate or gynecologic cancer was associated with the feeling that one's sexual life was negatively influenced. Conclusion: Sexual problems are common among patients with advanced cancer and should be addressed by the health care system.

Nausea in advanced cancer: relationships between intensity, burden, and the need for help.

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.

The 'Cancer Home-Life Intervention': A randomised controlled trial evaluating the efficacy of an occupational therapy-based intervention in people with advanced cancer.

BACKGROUND: People with advanced cancer face difficulties with their everyday activities at home that may reduce their health-related quality of life. To address these difficulties, we developed the 'Cancer Home-Life Intervention'. AIM: To evaluate the efficacy of the 'Cancer Home Life-Intervention' compared with usual care with regard to patients' performance of, and participation in, everyday activities, and their health-related quality of life. DESIGN AND INTERVENTION: A randomised controlled trial ( ClinicalTrials.gov NCT02356627). The 'Cancer Home-Life Intervention' is a brief, tailored, occupational therapy-based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities. SETTING/PARTICIPANTS: Home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability. Secondary outcomes were activities of daily living process ability, difficulty performing prioritised everyday activities, participation restrictions and health-related quality of life. RESULTS: A total of 242 participants were randomised either to the intervention group ( n = 121) or the control group ( n = 121). No effect was found on the primary outcome (between-group mean change: -0.04 logits (95% confidence interval: -0.23 to 0.15); p = 0.69). Nor was any effect on the secondary outcomes observed. CONCLUSION: In most cases, the 'Cancer Home-Life Intervention' was delivered through only one home visit and one follow-up telephone contact, which not was effective in maintaining or improving participants' everyday activities and health-related quality of life. Future research should pay even more attention to intervention development and feasibility testing.

Conceptualizing patient empowerment in cancer follow-up by combining theory and qualitative data.

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.

Patient empowerment: a systematic review of questionnaires measuring empowerment in cancer patients.

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 patients. Very few questionnaires were explicitly developed to explore empowerment, and the review brings to light a significant lack of questionnaires that measure patient empowerment comprehensively.

Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

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--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

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 ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014.

How does pain experience relate to the need for pain relief? A secondary exploratory analysis in a large sample of cancer patients.

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.

Change in health-related quality of life over 1 month in cancer patients with high initial levels of symptoms and problems.

PURPOSE: To investigate the mean changes over time in health-related quality of life among advanced cancer patients who did not receive any intervention, comparing changes among all patients versus changes in subgroups of patients with high initial symptom scores. METHODS: Patients with advanced cancer answered two questionnaires, containing the EORTC QLQ-C30 (15 multi- or single-item scales), with approximately 1 month in between and received no known intervention in between. For each QLQ-C30 scale, we estimated the mean change among all patients and in subgroups of patients scoring at least 33, 50, and 66 %, respectively, of maximum (maximal symptom score or maximally reduced function score) in the first questionnaire. RESULTS: In total, 1014 patients completed both questionnaires. As hypothesized, we found no change over time in mean scores when including all patients [average mean change = -0.9 (95 % CI -1.5;-0.6)]. In the subgroups of patients initially scoring at least 33, 50, or 66 % of maximum, the score improved with mean changes of -9.2 (95 % CI -10.1;-8.4), -13.1 (95 % CI -14.4;-11.8), and -15.6 (95 % CI -17.2;-13.9), respectively. CONCLUSIONS: We quantified the magnitude of change over a 1-month period in health-related quality of life in advanced cancer patients, and in subgroups selected according to certain initial symptom levels. This information may help the interpretation of longitudinal studies of patients selected via screening.

Comparing three different approaches to the measurement of needs concerning fatigue in patients with advanced cancer.

PURPOSE: To identify patients having fatigue, it is necessary to assess the patients fatigue systematically. This study investigates three different approaches to the assessment of needs concerning fatigue in patients with advanced cancer and addresses the following questions. METHODS: In a cross-sectional nationwide survey, patients were asked about their needs concerning fatigue in three different ways: Fatigue intensity was measured with the European Organisation for Research and Treatment of Cancer quality of life questionnaire, fatigue burden (the extent fatigue was a problem) and fatigue felt need (whether the patient experienced an unmet need regarding their fatigue) was measured with the Three-Levels-of-Needs Questionnaire. The relations between these three approaches were investigated using cross-tabulations, polychromic correlations, receiver operating curves, and area under the curve. RESULTS: In total, 1447 patients participated (61 %). Of these, 34 % reported at least quite a bit fatigue (intensity), 36 % reported at least quite a bit fatigue burden, and 35 % reported experiencing an unmet need. There was a high correlation between fatigue intensity and fatigue burden (0.91). Fatigue intensity was also correlated with experiencing an unmet need and having at least a little fatigue predicted experiencing an unmet need. CONCLUSION: Overall, no matter which approach was used, about a third of the patients had a need concerning fatigue. In nearly all cases, patients who had fatigue also experienced fatigue to be a problem. The QLQ-C30 item 'Were you tired' worked as a screening tool to identify patients experiencing an unmet need concerning fatigue.

Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems.

OBJECTIVES: 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. METHODS: Advanced cancer patients (n = 1630) from 54 hospital departments across Denmark received the 3-Levels-of-Needs Questionnaire (3LNQ). The 3LNQ measures 'problem burden', the degree to which a symptom or problem is perceived as a problem, and 'felt need', whether the patient receives adequate help. Prevalences were calculated for 'problems' (at least 'a little' of a problem), 'moderate/severe problems' (at least 'quite a bit' of a problem) and 'felt need' (inadequate help or no help despite wanting it). RESULTS: In total, 977 (60%) patients participated. The most frequent 'problems' were fatigue (73%; 'moderate/severe' 36%) and limitations doing physical activities (65%; 'moderate/severe' 36%). For the 12 symptoms/problems assessed the prevalence of 'felt need' was 11-35%. Of the patients who had received help, 34-74% viewed the help as inadequate. Of those who had not received help, 48-78% wished for help. CONCLUSION: Advanced cancer patients are not receiving the help they need. Large proportions of patients were burdened by symptoms/problems. Of those who had received help, many viewed it as inadequate. Better symptom/problem identification and management is warranted for advanced cancer patients.

Cancer patients' evaluation of communication: a report from the population-based study 'The Cancer Patient's World'.

PURPOSE: 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. METHODS: In a cross-sectional survey, a nationally representative sample of 2,202 cancer patients who had been in contact with a hospital department during the past year was invited to respond to a questionnaire. Communication with doctors and nurses was assessed separately as were their abilities as listeners, doctors' use of an understandable language, timing of the information, duration of consultations, and whether doctors criticised other doctors. RESULTS: A total of 1,490 cancer patients responded to the questionnaire. Of these, 24 % reported one or more problems with the areas of communication measured. The problem most frequently reported (by 12 %) was not having sufficient time for consultations. More patients reported problems with doctors' communication and abilities as listeners than with nurses' skills in these areas. There was a general pattern that younger patients and those sampled in Copenhagen reported the highest degree of dissatisfaction with the communication. Those exposed to a high number of different treatment modalities were at especially high risk of experiencing problems. CONCLUSIONS: A high proportion of patients reported one or more problems in the communication. However, the number reporting each of the specific problems was remarkably low. Special focus should be given to patients exposed to several treatment modalities and their communicative needs.