the CRIC Study Investigators* Background--Serum bicarbonate varies over time in chronic kidney disease (CKD) patients, and this variability may portend poor cardiovascular outcomes. The aim of this study was to conduct a time-updated longitudinal analysis to evaluate the association of serum bicarbonate with long-term clinical outcomes: heart failure, atherosclerotic events, renal events (halving of estimated glomerular filtration rate [eGFR] or end-stage renal disease), and mortality.

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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.

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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.

To take cancer survivorship research to the next level, it’s important to gain insight in trajectories of changing patient (reported) outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based PROFILES (Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (e.g., activity trackers; blood draws; hair samples; online food diaries; online cognitive tests; weighing scales; online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection like return of individual results to participants which may not only improve patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient (reported) outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, that go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer (treatment) and to identify new interventions to promote health.

3 Background: Previous studies on experienced quality of care and quality of life have not addressed the reciprocal relation between patients and their relatives. For the first time we were able to include almost 700 couples (patient – relative) in a palliative oncological care context. This study aims to assess the experienced quality of care and emotional functioning (EF) of patients with advanced cancer and their relatives, including their reciprocal relation by using a dyadic approach. Methods: A prospective multicentre observational study among patients with advanced cancer and their relatives, recruited from 40 hospitals in the Netherlands or self-enrolled between November 2017 and January 2020 (eQuiPe study). Patients with metastatic cancer and their relatives were eligible to participate. Respondents completed a questionnaire and clinical data of the patient were obtained by linking the information to the Netherlands Cancer Registry (NCR). Logistic regression analyses were performed on baseline data of 1,103 patients and 831 relatives to assess the association between experienced quality of care and EF of patients and relatives separately and across dyads. Results: In total, 1,103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower levels of quality of life, including EF, and more symptoms compared to the normative population ( p<.001). Relatives reported even clinically relevantly lower EF compared to patients (69 vs. 78, p<.001) and were less satisfied with care (59 vs. 74; p<.001). Being more satisfied with care in general ( p<.05) and clarity about who their central health care professional ( p<.05) were positively associated with high EF in patients. For relatives, perceived continuity of care ( p<.01) and continuity of information for the patient ( p<.05) were positively associated with high EF. Dyadic analyses showed that EF of patients ( p<.001) and relatives ( p<.001) was positively associated with EF of the other person and perceived continuity of care by relatives was positively associated with high EF in patients ( p<.01). Conclusions: Experienced integral organisation and satisfaction with care in patients and relatives are related to their EF. The additional reciprocal relation between patients’ and their relatives’ EF and the experienced continuity of care suggests the opportunity for a family‐centered approach to optimize advanced cancer care.

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