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Purpose: The objectives of the study were to determine the prevalence of (uncontrolled) OIC, relevant medications / interventions employed by healthcare professionals, and the additional strategies utilised by patients, amongst European patients with cancer pain., Methods: This study was a prospective observational study conducted at 24 research sites in ten European countries. Cancer patients receiving opioid analgesics for at least a week were recruited, and asked to complete a questionnaire including background information, single question (Are you constipated?), Rome IV diagnostic criteria for OIC, Bowel Function Index (BFI), and Patient Assessment of Constipation Quality of Life questionnaire (PAC-QOL). Participants were characterised as having / not having OIC on the basis of the Rome IV diagnostic criteria., Results: 1200 participants completed the study. 59.5% met the Rome IV diagnostic criteria for OIC: only 61.5% that met these criteria self-reported constipation. 72% participants were prescribed a regular conventional laxative / peripherally acting mu-opioid receptor antagonist (PAMORA). However, only 66% took their prescribed laxatives every day. Many participants had utilised other strategies / interventions to manage their OIC. Furthermore, 27% had needed to use suppositories, 26.5% had needed to use an enema, and 8% had had a manual evacuation. The use of PAMORAs, and other novel effective medications, was relatively uncommon., Conclusion: The results of this study suggest that management in Europe is often inadequate, and this undoubtedly relates to a combination of inadequate assessment, inappropriate treatment, and inadequate reassessment., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: As frontline caregivers, nurses often find themselves at the crossroads of complex ethical decisions that can significantly impact patient outcomes and their own well-being. Identifying the areas of experienced moral dilemmas in the workplace and gaining insight into the prevalence of moral distress can lead to a healthier workplace environment., Objective: This study aims to examine the frequency, intensity and level of moral distress among nurses who work in a hospital, and to identify the variables associated with the level of moral distress., Design: Cross-sectional study., Setting: One university hospital and six general hospitals., Participants: 654 of the 1095 nurses working on inpatient units filled out the questionnaire (response rate 60 %)., Methods: The intensity and frequency of moral distress was assessed using the Moral Distress Scale-Revised (MDS-R). We also asked two additional questions about considering leaving their job, and if they could describe a distressing case and how moral distress was discussed. Multivariable regression analysis was conducted to identify the variables associated with the level of moral distress., Results: The overall mean MDS-R score of the 654 included nurses was low at 36.4 (SD 26). Nurses reported to have frequent dilemmas regarding organizational aspects and aspects of end-of-life care. The multivariable analyses showed that higher levels of moral distress were experienced by registered nurses, nurses working on a medical ward, and nurses who had ever left or considered leaving their job, or considering leaving their job at the moment., Conclusions: Although nurses in our study experiences low levels of moral distress, they do experience moral dilemmas related to organizational topics and end of life care. We all need to pay attention to these dilemmas and how to discuss them in order to achieve a resilient nursing profession at a time of major nursing shortages., Tweetable Abstract: Caring for increasingly complex patients in a dynamic healthcare system is likely to continue to produce morally challenging scenarios., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills., Methods: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model., Results: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA)., Conclusions: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required., Competing Interests: Declaration of competing interest The authors have no conflict of interest to declare., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Cancer pain is a common symptom in patients with cancer and can largely affect their quality of life. Pain management is important to minimize the impact of pain on daily activities. Cancer nurses are significantly involved in all steps of pain management and contribute to the success of therapy through their knowledge and expertise. While they generally play an important role in the screening, assessment, diagnosis, treatment and follow-up of patients and their (pain) symptoms, this varies from country to country in Europe. An important aspect is their role in educating patients and their families about what pain is, what impact it can have, how it can be treated pharmacologically or non-pharmacologically and what effects or problems can occur during treatment. While there is a great discrepancy between education and training opportunities for cancer nurses in different European countries, there is a continued need for education and training in pain management. Cancer is increasingly becoming a chronic disease, and the management of pain in cancer survivors will be crucial to maintain an adequate quality of life. With this, the crucial role of cancer nurses is becoming even more important., Competing Interests: JdM is a steering committee member and lecturer for the Mundipharma Pain Academy and an advisory board lead for Viatris. RdM is an employer of Mundipharma Pharmaceuticals B.V. At initiation of this work, FAdJ was employed by Mundipharma. WHO is a steering committee member and lecturer for the Mundipharma Pain Academy. ND, AK, STP and HU declare no conflicts of interest. The funders (Mundipharma Research Limited) had no role in the design of the study; in the collection, analyses or interpretation of data; in the writing of the manuscript or in the decision to publish the results., (© The Author(s), 2023.)

Purpose: Cancer has a major impact on the individual patient and their family, especially children. However, little is known about the needs of adolescents (10-19 years) whose parent is diagnosed with cancer, especially breast cancer. Insights into psychosocial needs are important to develop appropriate guidance and support for these adolescents. The aim of this study is to explore the psychosocial needs of adolescents whose parent is diagnosed with breast cancer to improve the support for these adolescents., Data Sources: This is an exploratory, qualitative study. In-depth interviews were conducted, and an interview guide was designed with the following topics: experiences, needs, and support. Participants were selected purposively and approached via the parent(s) after consultation. Interviews were audiotaped, transcribed, and thematically analyzed by using the software program NVivo., Conclusion: Fourteen adolescents (12-19 years) were interviewed, which resulted in five themes: distraction, support, being able to talk about it, information, and continuing a normal life. Adolescents whose parent is diagnosed with breast cancer need the best possible preservation of their normal lives. It is important for them to be able to share their story and find support from someone close to them., Implication for Nursing Practice: The route to the adolescent is always through the parent. Healthcare professionals can discuss the well-being of the adolescent during regular consultation with the parent. If there are concerns, healthcare professionals can advise the parent about the possible needs of the adolescent and could coach the parent in supporting the adolescent to discuss their needs., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported here., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: The Covid -19 pandemic has had a major influence on the organization of cancer care. Little is known about how patients with cancer and their relatives experienced this period. This study explored these experiences and levels of distress and resilience of Dutch cancer patients and their family caregivers during the Covid-19 pandemic., Methods: The qualitative design included in-depth interviews with cancer patients and their family caregivers to explore their experiences. The distress thermometer (NCCN-DT) and resilience questionnaire (CD-RISC2) were used for contextualizing. Data were analyzed by thematic analysis and descriptive statistics., Results: 40 patients with breast cancer, lung cancer, colorectal cancer, or melanoma who received active systemic anti-cancer therapy, were included with a median age of 60 years[SD11.1]. We also included fourteen family caregivers with a median age of 60 years [SD8.6].Five themes were identified: (1) Living with cancer during Covid-19, (2) Changes in cancer care, (3) Information and support, (4) Safety inside the hospital, and (5) Impact of vaccination. The mean score of NCCN-DT was 2.9[SD2.4] for patients and 4.3[SD2.7] for family caregivers. Mean score of CD-RISC2 was 6.6[SD1.4] for patients and 7.2[SD1] for family caregivers., Conclusions: Patients felt vulnerable during the pandemic and were strict in following the safety precautions. The limited companionship of family caregivers was experienced as the biggest restraint. In general, they felt safe inside the hospital. Vaccination brought some relief. Patients were satisfied with the provided support, but areas were identified which are amenable for redesigning care processes., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Objectives: There is little research to help health care professionals understand what patient outcomes are considered a priority in advanced liver or kidney cancer. Knowing what is important to patients can help promote person-centered approaches to treatment and disease management. The aim of this study was to identify those patient-reported outcomes (PROs) that patients, carers, and health care professionals consider as "core" when providing care to those with advanced liver or kidney cancer., Data Sources: A three-round Delphi study was undertaken to ask experts by profession or experience to rank PROs identified from a previous literature review. Fifty-four experts, including people living with advanced liver or kidney cancer (44.4%), family members and caregivers (9.3%), and health care professionals (46.8%), reached consensus on 49 PROs including 12 new items (eg, palpitations, hopefulness, or social isolation). Items with the highest rate of consensus included quality of life, pain, mental health, and capacity to do daily activities., Conclusion: People living with advanced liver or kidney cancer experience complex health care needs. Some important outcomes were not actually captured in practice in this population and were suggested as part of this study. There are discrepancies between the views of health care professionals, patients, and family in what is important, highlighting the need of using measures to facilitate communication., Implications for Nursing Practice: Identification of priority PROs reported here will be key to facilitate more focused patient assessments. The actual use of measures in cancer nursing practice to allow monitoring of PROs must be tested for feasibility and usability., Competing Interests: Declaration of competing interests The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. Amanda Drury reports a relationship with European Oncology Nursing Society that includes board membership. The corresponding author serves on the editorial board of the journal we are submitting (GK)., (Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)

Purpose: Until today, it is not clear why patients decide to continue with early clinical trial (ECT) participation. Therefore, the aim of this study is to explore to which extent the self-determination theory of Ryan and Deci, according to the ECT enrollment phase, corresponds to the motivations of participants during ECT's., Methods: This study has a qualitative design. Data were collected using semistructured interviews and were deductively analyzed in Nvivo12 using the thematic analysis approach of Braun and Clarke., Results: As a result of the deductive analysis performed, six themes and twenty subthemes emerged which matched the three personal needs: competence, relatedness, and autonomy (n = 11). "Competence" included the following themes: mixed future expectations, treatment expectations, and control of the outcome. "Relatedness" included the theme altruistic motivation. "Autonomy" included the themes; to live and act in harmony as well as mental and physical burden., Conclusion: Participants felt they tried everything and that they were treated to the limit. This not only gives the motivation to continue participating but also a sense of altruism. Despite different burdens, side-effects, and the feeling of being a test subject, the participants will not easily choose to stop participation in order to prevent saying afterwards: "If only I had"., (© 2023. The Author(s).)

Background: Complex survivorship cancer care requires nurse-led interventions. Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients., Objective: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention., Methods: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and self-management behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups., Results: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group., Conclusion: The holistic focus of this nurse-led intervention proved to be acceptable to the HSCT patients and promising in supporting the (complex) challenges that these patients face during their process of recovery and rehabilitation., Implications for Practice: Nurse-led patient navigation interventions with a holistic approach when included in the daily practice of complex survivorship cancer care can support HSCT patients' information and referral needs during their rehabilitation., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Patients with glioblastoma have a short life-expectancy, with median survival rates of 9 to 12 months. Providing information about the expected course of the disease can be complicated. Therefore, an online tool has been developed. The objective of this tool is to better inform patients and proxies, and decrease their uncertainties and improve their quality of life. This study aims to gather experiences of an initial cohort of patient-proxy dyads, to identify if the tool meets the previously mentioned objectives., Methods: This is a qualitative study based on thematic analysis. Interviews were conducted with 15 patient-proxy dyads. For these interviews, a combined method of think-aloud sessions and semi-structured interviews were used. Audiotapes of these interviews were transcribed verbatim and thematically analyzed., Results: The analysis revealed four major themes, namely, unmet information needs, improvement possibilities, effects of the tool and clinical implementation. Participants indicated that this tool could decrease uncertainties and increase their perceived quality of life. Also, they often mentioned that it could have a positive effect on the efficiency and quality of consultations., Conclusion: Participants considered this tool to be useful and effective in decreasing uncertainties for both patients with glioblastoma and their proxies. Moreover, participants brought up that this tool could positively influence the efficiency and quality of consultations. This could lead to more patient participation and empowerment, and could therefore enhance shared decision making and timely advanced care planning., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology.)

Background: The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended., Objective: This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment., Methods: Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills., Results: Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner., Conclusion: This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills., Implications of Practice: For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)