Danish value sets for the EORTC QLU-C10D utility instrument.

PURPOSE: In this study, we developed Danish utility weights for the European Organisation for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30. METHODS: Following a standardized methodology, 1001 adult participants from the Danish general population were quota-sampled and completed a cross-sectional web-based survey and discrete choice experiment (DCE). In the DCE, participants considered 16 choice sets constructed from the key 10 dimensions of the QLU-C10D and chose their preferred health state for each one. Utility weights were calculated using conditional logistic regression with correction for non-monotonicity. RESULTS: The sample (n = 1001) was representative of the Danish general population with regard to age and gender. The domains with the largest utility decrements, i.e., the domains with the biggest impact on health utility, were physical functioning (- 0.224), pain (- 0.160), and role functioning (- 0.136). The smallest utility decrements were observed for the domains lack of appetite (- 0.024), sleep disorders (- 0.057), and fatigue (- 0.064). Non-monotonicity of severity levels was observed for the domains sleep disturbances, lack of appetite, and bowel problems. Deviations from monotonicity were not statistically significant. CONCLUSION: The EORTC QLU-C10D is a relatively new multi-attribute utility instrument and is a promising cancer-specific health technology assessment candidate measure. The country-specific Danish utility weights from this study can be used for cost-utility analyses in Danish patients and for comparison with other country-specific utility data.

Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.

Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial.

BACKGROUND: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark. METHODS: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up. RESULTS: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes. CONCLUSION: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals. TRIAL REGISTRATION NUMBER: NCT03466580.

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.

The interaction between informal cancer caregivers and health care professionals: a survey of caregivers' experiences of problems and unmet needs.

PURPOSE: In order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs). This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between dissatisfaction with the interaction and socio-demographic and disease-related variables. METHODS: In a cross-sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three of their caregivers. RESULTS: A total of 590 caregivers (related to 415 (55 %) of 752 eligible patients) participated. Although many caregivers were satisfied, considerable proportions experienced problems or had unmet needs regarding the interaction with HCPs. Prominent problematic aspects included optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 % were dissatisfied), attention to the caregivers' wellbeing (e.g., 51 % of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling), and provision of enough information to the caregivers (e.g. 39 % were dissatisfied with the amount of time spent on informing caregivers). The patients' adult children and siblings, younger caregivers and caregivers to younger patients tended to report the highest levels of interaction problems and unmet needs. CONCLUSIONS: The caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.

Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient: a survey.

BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and the caregiver's relationship to the patient (spouse/partner, etc.) are related to these experiences. METHODS: In a cross-sectional questionnaire study, randomly selected cancer patients with a range of diagnoses and disease stages were invited to pass on the 'Cancer Caregiving Tasks, Consequences and Needs Questionnaire' (CaTCoN) to 1-3 of their caregivers. RESULTS: A total of 590 caregivers related to 415 (55% of 752 eligible) cancer patients participated. Large proportions of caregivers experienced substantial caregiving workload, e.g., provision of psychological support (74%), as well as a range of negative consequences, most commonly stress (59%). Some caregivers experienced personal growth, but relatively large proportions did not. Caregiver status and the caregiver's relationship to the patient were associated with some caregiving aspects. Primary caregivers experienced the highest caregiving workload, and non-primary caregivers experienced most problems with getting time off from work. Spouses/partners and/or parents experienced the highest workload, most lack of time for social relations, most financial difficulties, and had the greatest need for seeing a psychologist. They furthermore experienced the highest degree of personal growth and had the smallest need for living a normal life while being a caregiver. Yet, regarding the majority of caregiving aspects, no associations with caregiver status or the caregiver's relationship to the patient were found. CONCLUSIONS: Overall, the findings confirm that cancer caregiving is burdensome. The primary and the closest caregivers seemed to take on most caregiving tasks, but, contrary to expectations, regarding the majority of caregiving consequences non-primary and more distant caregivers were affected to the same degree as the primary and closest caregivers. Initiatives and interventions to support not only the primary caregivers are therefore warranted.

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.

Using mixed methods to assess how cancer patients' needs in relation to their relatives are met in the Danish health care system: a report from the population-based study "The Cancer Patient's World".

AIM: 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. METHOD: Items were validated by patient-observer agreement and cognitive interviews. Adequacy of support was assessed in a cross-sectional study of 1,490 Danish cancer patients; 147 of these also answered an open-ended question. RESULTS: All items performed well in the validation. Only 4 % reported lack of support from their relatives, whereas 9 and 11 % had lacked support from the health care professionals regarding how to tell the relatives about the disease and regarding the relatives in general, respectively. Although the patients' expectations are not unequivocal, a large proportion (35 %) reported that the health care professionals had shown little interest in how the relatives were doing. This was most pronounced for female patients and patients sampled in urban areas. Compared to older patients, younger patients lacked more support with respect to the relatives in general and regarding how to tell them about the disease. Divorced patients were less satisfied than married patients on all measures. CONCLUSION: While most patients felt well-supported by their relatives, the oldest, the divorced, and those without children may be a vulnerable group. Many patients reported that the health care staff showed insufficient interest in the well-being of the relatives. Thus, it may be beneficial for both the patient and the relatives if health care professionals acknowledge and support the relatives in fulfilling their important role as caregiver and companion.

Are different groups of cancer patients offered rehabilitation to the same extent? A report from the population-based study "The Cancer Patient's World".

PURPOSE: 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. METHODS: Using patient-observer agreement and cognitive interviews, we validated a seven-item questionnaire designed to assess cancer patients' perception of the sufficiency of the offered rehabilitation. A cross-sectional study among 2,202 Danish cancer patients affiliated with hospitals was carried out. RESULTS: The questionnaire was well understood, indicating good validity. In the cross-sectional study, 1,490 patients (68%) participated. Up to 39% of cancer patients did not receive the physical rehabilitation they felt they needed. About half of those who had felt a need to talk to a psychologist were offered this. Insufficiency of other rehabilitation offers was reported by 10-24%. Age most consistently predicted insufficient rehabilitation; higher age predicted insufficient information about support from other sources (than hospital staff) and younger age predicted lack of help to manage symptoms, return to everyday life, and deal with financial and especially work-related consequences. We found no consistent signs of traditional social inequality in the perception of rehabilitation, but we observed some signs of social inequality for unemployed or divorced/separated patients. CONCLUSIONS: Age predicted sufficiency of the rehabilitation in two directions, possibly reflecting different needs in younger and older patients. When tailoring rehabilitation programs, it should be ensured that the different needs are met.