Mathijs P. Hendriks

Introduction: The diagnostic and therapeutic landscape for high-risk localised prostate cancer and synchronous metastatic hormone-sensitive prostate cancer (mHSPC) is rapidly evolving, driven by advances in imaging, risk stratification and systemic therapies, including the advent of precision medicine. High-quality real-world data integrating clinical, imaging, molecular, quality-of-life information and outcome data remain scarce. The PROspective Prostate Cancer Infrastructure (ProPCI) is a nationwide, multicentre observational cohort designed to collect comprehensive longitudinal data and biomaterials to support real-world evidence generation, facilitate biomarker discovery and enable future cohort multiple randomised controlled trials (cmRCTs). Methods and analysis: ProPCI includes adult men with high-risk localised prostate cancer or synchronous mHSPC across hospitals in the Netherlands. Clinical data are extracted from electronic health records using a standardised protocol and linked to national registries and healthcare use datasets. Patient-reported outcome measures are collected at baseline and regular intervals using validated instruments. Serial blood samples are biobanked for circulating tumour DNA and other molecular analyses. Outcomes include diagnostic and treatment patterns, Prostate-specific antigen kinetics, time to castration-resistant prostate cancer, radiological and clinical progression, health-related quality of life trajectories and healthcare use, including expenditure and exploratory biomarker associations. Statistical methods include descriptive analyses, time-to-event models, mixed-effects models and biomarker-outcome correlates. Ethics and dissemination: Ethical approval has been obtained from the Committee on Research Involving Human Subjects (CMO) of Radboudumc. Written informed consent will be obtained from every participating patient and covers: (1) extraction and linkage of clinical, imaging, pathology and registry data, (2) future contact for potential cmRCT participation; and optional components (3) quality-of-life questionnaires, (4) collection of additional blood samples and (5) use of biomaterials for genomic testing. Results will be disseminated through peer-reviewed publications. Trial registration number: NCT07560748 .

Purpose Tumour genomic profiling, including whole genome sequencing (WGS), offers opportunities for refined diagnosis and personalised treatment for adolescents and young adults (AYAs) with advanced or poor prognostic cancer. This study explores AYAs’ attitudes towards receiving WGS in standard oncological care, their preferences for the communication of results and the perceived impact of these results. Methods Semistructured interviews were conducted with AYAs (aged 18–39 years at initial cancer diagnosis). Interviews were transcribed and analysed thematically using an inductive approach in NVivo (V.12). Results 16 AYAs participated. Analysis revealed five themes: (1) confidence in the current WGS procedure; (2) challenges in understanding and communicating purpose and results of WGS; (3) dual emotional impact of WGS results; (4) high value placed on hereditary information for self and loved ones and (5) balancing altruism and personal risk in genomic data sharing. Conclusion AYAs with advanced cancer generally value WGS, even when results have no immediate clinical consequences. They describe benefits such as hope, reassurance and the opportunity to help future patients. However, misunderstandings about its purpose, difficulties in interpreting genomic findings and limited awareness of potential hereditary implications may limit its optimal use. Strengthening communication with age-appropriate, accessible explanatory materials will be essential to ensure AYAs understand the purpose and potential outcomes of WGS and can fully benefit from its implementation.

Background: Death anxiety in patients with advanced cancer may increase during the last year of life due to increasing symptom burden and growing awareness of prognosis. Aims: To examine the trajectory of death anxiety during the last year of life in patients with advanced cancer and its associated factors. Methods: Data from the prospective, multicentre, observational eQuiPe study were used. Patients with stage IV solid cancer were included (2017–2020) and completed three‐monthly questionnaires until death. Death anxiety was measured using a single item from the Problem and Needs in Palliative Care questionnaire (yes, a little bit, or no). Additionally, 32 patients completed the Death and Dying Distress Scale (DADDS). Longitudinal analyses were performed using mixed‐effects regression. Results: In total, 629 patients were included (mean age: 66 years, SD = 10). During the last year of life, 12%–15% experienced death anxiety, 30%–34% a little, and 52%–58% none. The prevalence of death anxiety remained stable over time and was significantly associated with female sex (OR 2.48), age (OR 0.93), fatigue (OR 1.10), planning (OR 1.84) and acceptance coping (OR 0.20), and social support (OR 1.39). Concerns about the impact of their death on relatives was the most frequently reported issue (84%) in patients with available DADDS data. Conclusions: The prevalence of death anxiety does not change in the last year of life and is associated with several psychosocial factors. These findings underscore the value of open communication and care approaches that strengthen adaptive coping and address the relational aspects of distress.

Background: End-of-life care affects both patients with advanced cancer and their relatives but is often assessed from only one perspective, namely that of bereaved relatives. This study aimed to gain insight into the quality of care as experienced by patients with advanced cancer and their relatives. Methods: A total of 367 patients with stage IV cancer, 242 relatives and 163 bereaved relatives were included from a large prospective, longitudinal study (eQuiPe), which ran from November 2017 until March 2020. Patients and their relatives completed a questionnaire during the last 3 months of the patient’s life. Bereaved relatives completed a questionnaire within six months after the patient’s death. Results: At the end of life, patients reported a mean satisfaction with care score of 72/100 (SD 21), and relatives a mean score of 59/100 (SD 28) for the care they received themselves. Continuity with care, the extent to which the care received from different healthcare professionals was coordinated, was associated with higher satisfaction with care in patients (β 2.1, 95% CI 1.6–2.6). Bereaved relatives reported that most patients died peacefully (87%) and at home (73%). Most bereaved relatives (66%) were contacted by a healthcare professional after the patient’s death, but over half were not informed about grief (52%) or the available options for bereavement support (58%), with about 20% reporting they would have appreciated this. Conclusions: Quality of end-of-life care was generally perceived as good. This study highlights the importance of good continuity of care as it is associated with higher satisfaction with care in patients. Also, one-fifth of the bereaved relatives reported that they had not been informed about bereavement care despite desiring it, which emphasizes the need for better care for relatives before and after the patient’s death.

Background: Physical activity (PA) is associated with improved overall survival (OS) among colorectal cancer (CRC) patients, but research on PA changes after diagnosis remains limited. This study examines associations between OS and changes in PA from CRC diagnosis onward, across stage- and treatment-related subgroups. Methods: Data were analyzed from patients in two large CRC cohorts (PLCRC and COLON) enrolled between August 2010 and December 2022 (follow-up until February 1st, 2024). This included 3395 stage I–IIA patients who underwent surgery only, 2406 stage IIB/C–III patients who received (neo-)adjuvant therapy, and 669 metastatic CRC (mCRC) patients. PA was assessed via the validated SQUASH questionnaire at diagnosis (T0), and at 6, 12, and 24 months post-diagnosis (T6 to T24). Moderate-to-vigorous-intensity recreational activity was quantified by calculating Metabolic Equivalent of Task (MET) hours per week. Associations with OS were examined for change (active [tertile 2 and 3] vs inactive [tertile 1]) between timepoints using multivariable Cox proportional hazards models. Results: Among surgery-only patients, change from inactivity to activity between T0 and T6 was significantly associated with OS (HR = 0.58, 95% CI = 0.35 to 0.96). For (neo-)adjuvantly treated patients, significant associations were observed between T6 and T12 (HR = 0.53, 95% CI = 0.31 to 0.90). Among mCRC patients, a significant association was observed between T6 and T12 (HR = 0.53, 95% CI = 0.29 to 0.99). Conclusion: Changing from inactivity to activity is significantly associated with prolonged survival during the early months post-diagnosis for surgery-only CRC patients, and later for those undergoing (neo-)adjuvant therapy or with metastatic disease. Validation is warranted in interventional studies.

Background: Patients with advanced cancer often have emotional problems such as inadequate coping, fear of new metastases, or the prospect of enduring physical suffering. Some will need professional emotional support to cope with these problems. Accurately identifying these patients requires a thorough understanding of their characteristics. Aim: To assess the need for emotional supportive care in patients with advanced cancer who have emotional problems, and their associated sociodemographic, disease-related, clinical, and psychosocial characteristics. Design: Prospective multicenter observational study on experienced quality of care and quality of life in patients with advanced cancer and their relatives. Setting/Participants: Baseline data were used of 892 patients with advanced cancer who had emotional problems. Results: In total, 92% of the patients with advanced cancer had emotional problems and 33% of these had emotional supportive care needs. Most patients without emotional supportive care needs had contact with an oncology nurse (70%), while a minority received additional psychosocial support. Our multivariable logistic regression analysis shows that fatigue (odds ratio [OR]: 2.65, 95% confidence interval [CI]: 1.82-3.86), pain (OR: 1.50, 95% CI: 1.07-2.12), and less social support (OR: 0.95, 95% CI: 0.91-0.99) were associated with having emotional supportive care needs. Conclusions: One-third of patients with advanced cancer who have emotional problems in the eQuiPe study report emotional supportive care needs. Oncologists and oncology nurses should be aware that emotional supportive care needs are more common in patients with advanced cancer who experience increased pain, fatigue, or decreased social support in addition to their emotional problems. The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Purpose of Review: This review aims to investigate the effect of patient-reported symptom monitoring, defined as the process of active and systematic reporting of symptoms initiated by the patient, on the health-related quality of life of breast cancer patients. Recent Findings: Evidence suggests that online patient-reported symptom monitoring has the potential to positively impact the health-related quality of life of non-metastatic breast cancer patients, who are receiving systemic therapy. However, there is a lack of literature specifically addressing patient-reported symptom monitoring and HRQoL in metastatic breast cancer patients. Summary: Additional research on symptom monitoring and HRQoL in breast cancer patients at all stages and during all phases in the disease trajectory, including its impact on personalized treatment, is needed before integration into routine care can be considered. Validated questionnaires and current implementation frameworks should be used to accelerate knowledge development about symptom monitoring for patients and their healthcare professionals, ultimately enhancing symptom self-management and the efficiency of breast cancer healthcare in the future.

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.