Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study.

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.

Relatives' Unmet Needs in the Last Year of Life of Patients With Advanced Cancer: Results of a Dutch Prospective, Longitudinal Study (eQuiPe).

Objective(s): Unmet needs of relatives of patients with advanced cancer not only reduce their own health-related quality of life, but may also negatively affect patients' health outcomes. The aim of this study was to assess changes in relatives' unmet needs of patients with advanced cancer in the last year of life and to identify differences in unmet needs by gender and type of relationship. Methods: Relatives of patients with advanced cancer in the Netherlands were included in a prospective, longitudinal, observational study. Relatives' unmet needs were measured every 3 months with an adapted version of the Problems and Needs in Palliative Care (PNPC) questionnaire Caregiver form (44 items, 12 domains). Questionnaires completed in the patients' last year of life were analyzed. Change of unmet needs in the last year, and differences in unmet needs by gender and type of relationship were analyzed. Results: A total of 409 relatives were included with a median of 4 unmet needs in the patient's last year. Unmet needs were most prevalent at all time points during the last year in the domains "caring for the patient" (highest need = 35%) and "psychological issues" (highest need = 40%). The number of unmet needs of relatives did not change significantly during the last year of life (P=.807). There were no significant differences in the number of unmet needs between male and female partners and between partners and other relatives. Conclusion: The most unmet needs for relatives were in the domains "caring for the patient" and "psychological issues." Professional support should focus on these items. Within these domains, it seems especially important that relatives get more knowledge and support about what scenarios to expect and how to deal with them.

Potentially inappropriate end-of-life care and its association with relatives' well-being: a systematic review.

PURPOSE: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives' well-being. METHODS: We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies' quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI). RESULTS: We identified eight studies including 10,062 relatives (59-79% female, mean age 46-61 years, 29-72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient's death. CONCLUSION: Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area.

Trajectories of emotional functioning and experienced care of relatives in the last year of life of patients with advanced cancer: A longitudinal analysis of the eQuiPe study.

OBJECTIVE: Advanced cancer has a major impact on both patients and their relatives. To allow for personalized support, it is important to recognize which relatives will experience a decline in emotional functioning during the patient's last year of life, when this decline will occur, and what factors are associated with it. This study aimed to examine the trajectory of emotional functioning of relatives during that time and the characteristics associated with changes in this trajectory. METHODS: A prospective, longitudinal, multicenter, observational study in patients with advanced cancer and their relatives was conducted (eQuiPe). We analyzed relatives' changes in emotional functioning in the patient's last year using the EORTC QLQ-C30 and assessed associations with sociodemographic and care characteristics using multivariable mixed-effects analysis. RESULTS: 409 relatives completed ≥1 questionnaires during the patient's last year of life. Mean age was 64 years, 61% were female and 75% were the patient's partner. During this year, mean emotional functioning declined significantly over time from 73.9 to 64.6 (p = 0.023, effect size = 0.43). The type of relationship between relatives and patients (p = 0.002), patient' sleep problems (p = 0.033), and continuity of care (p = 0.002) were significantly associated with changes in emotional functioning. CONCLUSIONS: Relatives' emotional functioning declined during the patient's last year of life. Support for them, especially partners and relatives of patients with sleep problems, is important. Relatives who experienced more continuity of care had a less steep decline in emotional functioning.

Emotional functioning during bereavement after the death of patients with advanced cancer and associated factors.

OBJECTIVE: The death of a loved one is considered to be the most stressful of all life events. However, the impact of bereavement on quality of life varies between individuals. The aim of our study was to assess emotional functioning (EF), which is a domain of quality of life, of bereaved relatives after the death of their loved one and its associated factors. METHOD: A prospective, longitudinal, multicenter, observational study on quality of care and quality of life of patients with advanced cancer and their relatives was conducted (eQuiPe). The association between EF of relatives during bereavement and the following factors was investigated: gender, type of relationship, educational level, pre-bereavement emotional and social functioning and global quality of life, social support pre- and during bereavement, anticipatory complicated grief, support of healthcare professionals during bereavement, age of patient and bereaved relative and duration of survival after primary cancer diagnosis. RESULTS: 150 bereaved relatives completed the bereavement questionnaire. In 41% of the bereaved relatives EF was ≤71, indicating clinically relevant low EF. Multivariable logistic regression showed that females experienced more often emotional problems (OR = 2.82). Emotional functioning pre-bereavement (OR = 0.96) and social support during bereavement (OR = 0.97) were associated with low EF during bereavement. CONCLUSIONS: Almost half of the bereaved relatives of patients with advanced cancer experienced low EF and this was associated with low EF pre-bereavement and low social support during bereavement. Support for relatives should be initiated before the patient's death. Future research is needed to investigate the impact of such support on relatives' wellbeing during bereavement.

Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe).

AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account. METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC). RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01). CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Use of potentially inappropriate medication in older patients with lung cancer at the end of life.

OBJECTIVES: Medications at the end of life should be used for symptom control. Medications which potential adverse effects outweigh their expected benefits are called 'potentially inappropriate medications' (PIMs). PIMs are related with adverse drug events and reduced quality of life. In this study, we investigated to what extent PIMs are dispensed to older patients with lung cancer in the last month of life. METHODS: We selected patients with lung cancer, aged 65+, diagnosed between 2009 and 2014, and who died before April 1st 2015 from the population-based Netherlands Cancer Registry (NCR). The NCR is linked to the PHARMO Database Network, that includes medications dispensed by community pharmacies in the Netherlands. The eight PIM groups were based on the OncPal Deprescribing Guideline: aspirin, dyslipidaemia medications, antihypertensives, osteoporosis medications, peptic ulcer prophylaxis, oral hypoglycaemics, vitamins and minerals. RESULTS: Data of 7864 patients with lung cancer were analyzed. Median age was 74 year (IQR = 70-79) and 67% was male. 45% of all patients received at least one PIM in their last month of life. Taking into account all dispensed medications, patients receiving PIMs received more different medications compared to those receiving no PIMs, respectively 10 (SD = 5) vs. 3 (SD = 4) different medications (P < 0.001). CONCLUSION: Almost half of the older patients with lung cancer in the Netherlands received PIMs in their last month of life. Since PIM use is associated with reduced quality of life, it is important that health care professionals continue to critically assess which medication can be discontinued at the end of life.

Bereaved relatives' quality of life before and during the COVID-19 pandemic: Results of the prospective, multicenter, observational eQuiPe study.

BACKGROUND: The death of a loved one is considered as one of the most stressful life events. During the COVID-19 pandemic, grief processes are potentially affected by measures such as social distancing and self-quarantine. AIM: The aim of this study was to give insight in the impact of the COVID-19 pandemic on quality of life, social support, and self-care of bereaved relatives of people with advanced cancer in order to evaluate whether care for bereaved relatives during the COVID-19 pandemic should be improved. DESIGN: A cross-sectional analysis using data from bereaved relatives of a prospective, longitudinal, multicenter, observational study on quality of care and quality of life of people with advanced cancer and their (bereaved) relatives (eQuiPe). SETTING/PARTICIPANTS: Quality of life, social support, and self-care of bereaved relatives who completed a questionnaire within 3-6 months after their relative died during COVID-19 (April-November 2020) were compared with bereaved relatives who completed this questionnaire pre-COVID-19 (April-November 2019). RESULTS: Ninety-one bereaved relatives were included in the analysis, 44 bereaved relatives completed the questionnaire pre-COVID-19 and 47 during COVID-19. The median age of the participants was 65 (IQR = 14) years and 58% were female. There were no significant differences between the pre-COVID-19 and during COVID-19 bereaved relatives in quality of life (68 vs 69), social support (17 vs 18), and self-care (20 vs 19). CONCLUSIONS: On the short-term, the COVID-19 pandemic did not have significant impact on bereaved relatives' wellbeing. However, long-term impact of the pandemic on their wellbeing should be assessed.

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol.

BACKGROUND: Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. METHODS: A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients' death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. DISCUSSION: This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. TRIAL REGISTRATION: Trial NL6408 ( NTR6584 ). Registered in Netherlands Trial Register on June 30, 2017.

Size estimates of action-relevant space remain invariant in the face of systematic changes to postural stability and arousal.

Perceptual estimates of action-relevant space have been reported to vary dependent on postural stability and concomitant changes in arousal. These findings contribute to current theories proposing that perception may be embodied. However, systematic manipulations to postural stability have not been tested, and a causal relationship between postural stability and perceptual estimates remains to be proven. We manipulated postural stability by asking participants to stand in three differently stable postures on a force plate measuring postural sway. Participants looked at and imagined traversing wooden beams of different widths and then provided perceptual estimates of the beams' widths. They also rated their level of arousal. Manipulation checks revealed that the different postures resulted in systematic differences in body sway. This systematic variation in postural stability was accompanied by significant differences in self-reported arousal. Yet, despite systematic differences in postural stability and levels of arousal perceptual estimates of the beams' widths remained invariant.