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Objectives: In palliative care, it is important for family caregivers to spend time with and care for the patient, and to receive (in)formal support. These elements were compromised during the Covid-19-pandemic. This study investigates what family caregivers of non-Covid-19-patients in the palliative phase shared online during the first wave of the pandemic, and what their communicative intentions were with posting online. Methods: To investigate what family caregivers shared online, a reflexive thematic analysis was performed on online newspaper articles and posts on Twitter, Facebook and online forums. To investigate family caregivers' communicative intentions with social media posts, content analysis was conducted guided by Speech Act Theory. Results: In total, 412 posts and articles were included, the majority being Tweets (86.7%). Four themes were constructed: 1) 'Being out of touch', 2) 'Fear, worries and uncertainties, 3) 'Disbelief, anger and resistance', and 4) 'Understanding, acceptance and gratitude'. Family caregivers felt overwhelmed with anger, sadness and anxiety, yet some expressing milder or positive attitudes towards the new circumstances. Family caregivers mostly posted online to share their personal experiences and emotions, and to express their opinions about the restrictions. Conclusions: The pandemic had distinct implications for family caregivers of non-Covid-19-patients in the palliative phase. In future similar circumstances, restrictions should be tailored to individual conditions and interventions should be in place to facilitate contact between patients, family caregivers and healthcare professionals and to support family caregivers. [ABSTRACT FROM AUTHOR]

Context: Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there. Objectives: To explore patients' and relatives' experiences of palliative care at home and in nursing homes. Methods: Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team. Results: Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional. Conclusion: In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care. [ABSTRACT FROM AUTHOR]

Background: Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients' and relatives' values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored. Objectives: To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals. Design: Cross-sectional survey study. Methods: A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics. Results: In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers. Conclusion: In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting. [ABSTRACT FROM AUTHOR]

Aim: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. Methods: A grounded theory study was performed, using semi‐structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. Results: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. Conclusion: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space. [ABSTRACT FROM AUTHOR]

objective: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. Methods: Exploratory qualitative research using semistruc-tured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multidisciplinary team thematically analyzed the data. Results: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. Conclusions: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team. [ABSTRACT FROM AUTHOR]

In this retrospective study, determinants of unbearable suffering in hospice patients who died due to euthanasia were analyzed. The four dimensions of suffering (physical, psychological, social, and existential) were used as a framework. 28 patients (5% of all admitted patients in nine years) were included. Most patients indicated 3–5 determinants, predominantly a combination of physical (96% of patients) and existential determinants (89%). Fatigue, anorexia, and dry mouth were the most prevalent and severe symptoms. Psychological (21%) and social determinants (4%) were much less often described. The results of this study may be used to assess determinants playing a role in euthanasia requests. [ABSTRACT FROM AUTHOR]

Background: A majority of patients prefer to die at home. Specialist palliative care aims to improve quality of life. Hospice assist at home is a Dutch model of general/specialised palliative care within primary care, collaboratively built by general practitioners and a hospice. Aim: The aims of this study are to explore whether hospice assist at home service enables patients at hometo express end-of-life preferences and die in their preferred location. In addition, this study provides insight into symptomburden, stability and early referral. Design: A retrospective cross-sectional evaluation study was performed (December 2014–March 2015), using hospice assist at home patient records and documentation. Primary outcome includes congruence between preferred and actual place of death. Secondary outcomes include symptom burden, (in)stability and early identification. Setting/participants: Between June 2012 and December 2014, 130 hospice assist at home patients, living at home with a life expectancy <1 year, were enrolled. Hospice assist at home, a collaboration between general practitioners, district nurses, trained volunteers and a hospice team, facilitates (1) general practitioner–initiated consultation by Nurse Consultant Hospice, (2) fortnightly interdisciplinary consultations and (3) 24/7 hospice backup for patients, caregivers and professionals. Results: A total of 130 patients (62 (48%) men; mean age, 72 years) were enrolled, of whom 107/130 (82%) died and 5 dropped out. Preferred place of death was known for 101/107 (94%) patients of whom 91% patients died at their preferred place of death. Conclusion: Hospice assist at home service supports patients to die in their preferred place of death. Shared responsibility of proactive care in primary care collaboration enabled patients to express preferences. Hospice care should focus on local teamwork, to contribute to shared responsibilities in providing optimal palliative care. [ABSTRACT FROM AUTHOR]

Aim. Improving quality of care for cancer patients requires insight into their specific wishes, needs, and preferences concerning cancer care. The aim of this study was to explore the impact of gender on cancer patients' needs and preferences. Patients and Methods. Data were obtained from 386 questionnaires assessing cancer patients' preferences for health care. Multivariate regression analyses were performed with data obtained from medical oncology patients treated in seven Dutch hospitals, using the scales of the questionnaire as dependent variables. Results. Patients rated safety, expertise, performance, and attitude of physicians and nurses highest on their list of preferences. There were significant differences between male and female patients concerning preferences in health care in 15 of the 21 scales and in two of the eight single items. Without exception, women found the care aspects mentioned in these scales and items more important than men. Multivariate regression analysis showed that, of all the patient- and disease-related factors, gender was the most important independent predictor of patient preferences. Conclusion. Gender impacts cancer patients' needs and preferences and should be taken into account for optimal cancer care. Cancer care might be tailored toward gender, for example, with regard to the means and extent of communication, manner and extent of support, counseling and rehabilitation, consultation length, and physician assignment. The results of this study may guide health care professionals and organizations to develop a gender-specific health care approach to further improve cancer patient-centered care. [ABSTRACT FROM AUTHOR]

Background: Health care for cancer patients is primarily shaped by health care professionals. This raises the question to what extent health care professionals are aware of patients' preferences, needs and values. The aim of this study was to explore to what extent there is concordance between patients' preferences in cancer care and patients' preferences as estimated by health care professionals. We also examined whether there were gender differences between health care professionals with regard to the degree in which they can estimate patients' preferences correctly. Methods: To obtain unbiased insight into the specific preferences of cancer patients, we developed the 'Cancer patients' health care preferences' questionnaire'. With this questionnaire we assessed a large sample of cancer patients (n = 386). Next, we asked health care professionals (medical oncologists, nurses and policymakers, n = 60) to fill out this questionnaire and to indicate preferences they thought cancer patients would have. Mean scores between groups were compared using Mann-Whitney tests. Effect sizes (ESs) were calculated for statistically significant differences. Results: We found significant differences (ESs 0.31 to 0.90) between patients and professionals for eight out of twentyone scales and two out of eight single items. Patients valued care aspects related to expertise and attitude of health care providers and accessibility of services as more important than the professionals thought they would do. Health care professionals overestimated the value that patients set on particularly organisational and environmental aspects. We found significant gender-related differences between the professionals (ESs 0.69 to 1.39 ) for eight out of twentyone scales and two out of eight single items. When there were significant differences between male and female healthcare professionals in their estimation of patients health care preferences, female health care professionals invariably had higher scores. Generally, female health care professionals did not estimate patients' preferences and needs better than their male colleagues. Conclusions: Health care professionals are reasonably well able to make a correct estimation of patients preferences, but they should be aware of their own bias and use additional resources to gain a better understanding of patients' specific preferences for each patient is different and ultimately the care needs and preferences will also be unique to the person. [ABSTRACT FROM AUTHOR]

Purpose: To analyze patient outcomes and processes of insertion after the introduction of the peripherally inserted central catheter (PICC) in the University Medical Center Utrecht (UMC Utrecht) in the Netherlands. Patients and method: A prospective analysis of PICC inserted in the UMC Utrecht looking at patient characteristics, dwell time and infections. Results: A total number of 510 PICCs in 439 patients with 17655 catheter days were analyzed using ultrasound (US) and modified Seldinger technique (MST). Overall there were 2.35 catheter-related bloodstream infections (CRBSI) per 100 devices and 0.68 infections per 1000 catheter days. When used specifically for home infusion, the CRBSI rates were 1.09 per 100 devices and 0.23 per 1000 catheter days. One advanced nurse practitioner (ANP) inserted all PICCs. Although a full sterile barrier (no hat and gown) was not used during insertion, the infection rate in our study was lower compared to the 1.1 infection per 1000 catheter days reported in a meta-analyses on CRBSI (Maki, Kluger, & Crnich, 2006). Conclusion: Through the use of modern techniques like US and MST and upper arm insertion of PICCs, the complication rate is lower compared to older techniques as shown in most prospective studies. Extended dwell time, as a positive outcome of using PICCs made more doctors decide to choose a PICC. Age of the patient did not influence dwell time or complications. Further research, preferably a randomized controlled trial, is needed to compare the subclavian catheter with the PICC as well as exploration of the effects of anticipatory choice for PICCs, specifically in immune compromised patients. [ABSTRACT FROM AUTHOR]

Objective: Care transitions are common in the last months of life and continuity of information and care is at risk when unplanned admissions are necessary. To mitigate the risk of inappropriate care, a transmural care pathway was developed, that includes active involvement of a patient's general practitioner during hospitalization., Design: Multiple-method feasibility study in an academic hospital and affiliated general practices from July to December 2022. Data collection involved a survey and semi-structured interviews. Analysis encompassed descriptive statistics and thematic analysis., Results: Patients (n = 41) with cancer who experienced an unplanned hospital admission were included. The study shows that personal contact and the use of a scripted protocol during care transitions improves collaboration between healthcare professionals. Balancing attention between the physical, psychological, social, and spiritual dimensions of patients remains a challenge., Conclusion: Personal telephone contact with a patient's GP during hospital admission and discharge contributes to continuity of information and care.

Background: Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP)., Objective: To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF., Methods: A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed., Results: The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns., Conclusion: The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective., Methods: We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed., Results: Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs., Conclusion: The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals., Methods: A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021., Results: In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting., Significance of Results: Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

Purpose: Patients with Testicular Germ Cell Tumors (TGCT) may suffer from several late effects due to their diagnosis or treatment. Follow-up care aims to identify the recurrence of cancer and support patients with TGCT in their experienced late effects. In the Netherlands, the validated Dutch version of the Edmonton Symptom Assessment System, Utrecht Symptom Diary (USD) is used to assess and monitor patient reported symptoms. As a first step to develop a specific USD module for TGCT-patients, it was necessary to identify the prevalence and intensity of late effects in patients with TGCT, covering the physical, social, psychical and existential domains of care., Methods: A cross-sectional study was conducted. First, literature was systematically assessed to create a comprehensive list of symptoms. This generated list was reviewed by expert healthcare professionals and the research group. Lastly, a survey was distributed amongst patients with TGCT in follow-up care in the University Medical Center Utrecht (UMCU) outpatient clinic., Results: In total, 65 TGCT-patients completed the survey. All described late effects were recognized by TGCT-patients, with 'fatigue', 'disturbed overall well-being', 'concentration problems' and 'neuropathy', indicated as most prevalent and scored with highest intensity. When prioritizing these late effects, patients assigned 'neuropathy' as most important., Conclusions: This study provided insight into prevalence and intensity of late effects, as indicated by TGCT-patients. In clinical practice, follow-up care can improve by empowering patients to discuss important items in daily life with their health-care professionals., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Context: Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into intentions and strategies of the health care professionals (HCPs) in preloss care during the end of life is still lacking., Objectives: To create a starting point for improvement of preloss care, this study explores HCPs' experiences with providing support aimed at parental feelings of grief during the child's end of life., Methods: Exploratory qualitative research using individual semistructured interviews with clinicians in pediatrics and neonatology in hospital and homecare settings. Data were thematically analyzed by a multidisciplinary team., Results: Nineteen HCPs participated. HCPs tried to ensure that parents could reflect on the care received as concordant to their preferences and were not hindered in their bereavement as a consequence of their professional actions. Strategies included maximizing parental presence, enabling parental involvement in decision making, and ensuring a dignified death. While using these strategies, HCPs faced several difficulties: uncertainty about the illness course, unpredictability of parental grief responses, and being affected themselves by the child's imminent death. It helped HCPs to develop a bond with parents, find comfort with colleagues, and making joint decisions with colleagues., Conclusion: HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and well-being during the end of life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence, and training is needed to improve preloss care in pediatrics., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Anxiety in patients with cancer is highly prevalent; yet it remains underestimated and inadequately assessed. Little is known about predictors for anxiety in hospitalized patients with cancer. Insight in predictors should improve recognition and enable a targeted approach., Objectives: To determine the prevalence of anxiety and predictors for anxiety in hospitalized patients with cancer at different stages of disease., Methods: A cross-sectional analysis of patients with cancer admitted to the Utrecht University Medical Center in 2015-2018 was conducted. The Utrecht Symptom Diary, an adapted Dutch version of the Edmonton Symptom Assessment System, was used to assess symptom burden on a numeric rating scale (0 = no symptom and 10 = worst possible symptom). Scores ≥4 were considered clinically relevant. All patients completed the Utrecht Symptom Diary as part of routine care. The first questionnaire after admission was selected. Using multivariable linear regression, the predictive value of potential predictors on anxiety was analyzed., Results: In total, 2144 patients were included, of which 22% reported clinically relevant anxiety. The prevalence of anxiety was highest (36%) in patients receiving symptom-directed palliation only. In the total group, female gender, younger age, depressed mood, sleeping problems, dyspnea, and cancer of the head and neck were predictive of anxiety. Throughout all stages of disease, depressed mood was consistently the strongest predictor., Conclusion: We found a high prevalence of anxiety in hospitalized patients with cancer. It is recommended to explore anxiety in hospitalized patients with cancer, in particular when they experience depressed mood. Structural use of a symptom diary during hospitalization facilitates the recognition of anxiety and concurrent symptoms., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Hospices provide multidimensional care. In the Netherlands, patients with <3 months estimated life expectancy have access to hospice care. Insight into patients admitted to hospices and the care provided is lacking. In preparation for a national multicenter study, a pilot study was performed., Objective: The primary objective was to test the appropriateness of the study procedures and the availability of hospice patient records (HPRs), and patient and care characteristics., Method: A cross-sectional pilot study was performed using a descriptive exploratory design. Sixteen hospices were invited to participate, and HPRs from 8 deceased patients per hospice were selected. Data were collected using self-developed electronic case report forms., Outcomes: (1). Appropriateness of procedures: availability of HPRs and identified barriers and strategies. (2) Availability of patient and care characteristics in HPRs., Results: In total, 104 HPRs of patients from 13 hospices were enrolled. Various types of HPRs were found with different availabilities: nurses' records were most available (98%) compared to volunteers' records (62%). Overarching barriers were as follows: ethical issues, lack of knowledge, and lack of communication. Information about the illness was most available (97%), whereas descriptions of experienced symptoms were least available (10%)., Conclusion: Collecting HPRs is difficult and time-consuming. Specifically, data from separate records of home care nurses and general practitioners were difficult to come by. Patient and care characteristics were alternately present, which led to an extension of data collection in HPRs to 3 time periods. Piloting is essential to adjust study procedures and outcome measures to ensure a feasible national multicenter hospice study.

ABSTRACTObjective:Insight into symptoms as predictors for anxiety may help to foster early identification of anxiety and to ameliorate anxiety management. The aim of this study was to determine which frequently occurring symptoms are predictors for anxiety in advanced cancer patients recently admitted to a hospice., Method: Symptom burden was measured in patients admitted to a hospice who died ≤3 month after admission using the Utrecht Symptom Diary. This is a Dutch-translated and adapted version of the Edmonton Symptom Assessment System to self-assess the 11 most prevalent symptoms and overall well-being on a 0-10 numerical rating scale. Multiple linear regression analysis was employed to analyze the predictive value of fatigue, nausea, pain, dyspnea, depressed mood, insomnia, and well-being on anxiety., Results: A total of 211 patients were included, 42% of whom were men, and the median age was 71 years (range = 31-95). Anxiety was uncommon and rarely severe: 25% had a score ≥1, and 14% had a score >3. After correction for age, gender, and marital status, depressed mood (p = 0.00) and dyspnea (p = 0.01) were independent predictors for anxiety and explained 23% of the variance in anxiety., Significance of Results: Hospice inpatients with advanced cancer who suffer from dyspnea and/or depressed mood are at increased risk for anxiety. Treatment of dyspnea and depressed mood may contribute to adequate anxiety management. Further research should explore other factors associated with anxiety, especially in the psychological, social, and spiritual domains.

Context: Nearing death, hospice patients are increasingly unable or unwilling to self-report their symptom intensity and rely on nurses' assessments., Objectives: We hypothesized that concordance between patients' and nurses' assessments of symptom intensity improves over time., Method: A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patient- and nurse-reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional. Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-Professional per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity and the one-way agreement intraclass correlation coefficient for well-being were used., Results: The most prevalent symptoms, fatigue, dry mouth, and anorexia also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35%-69%). Agreement beyond chance was low to fair (0.146-0.539) and the intraclass correlation for well-being was low (0.25-0.28). Absolute concordance and agreement beyond chance did not improve over time., Conclusion: Concordance between patients' and nurses' assessment of symptom prevalence is good, and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Anxiety is a common symptom in patients with advanced cancer. Although pharmacological and psychosocial interventions are recommended, it remains unclear which role nurses can play in supporting patients with anxiety., Objective: The objective was to provide an inventory of non-pharmacological nurse-led interventions and evaluate the effectiveness in managing anxiety in advanced cancer patients., Design: A systematic literature review was performed from xx-xx-xxxx until March 2013. Four databases (MEDLINE, CINAHL, PsycINFO and Cochrane) were searched using predefined search terms without date limits. Randomized controlled trials, focusing on non-pharmacological nurse-led interventions in the management of anxiety in patients with advanced cancer were identified. Due to the heterogeneity of the included studies, results are presented in a descriptive way., Results: A total of seven studies were included. The interventions were categorized into patient education, telemonitoring, psychotherapy, complementary care or a combination of these. Two studies showed significant improvements in anxiety levels in patients who received a psychoeducational intervention and in those who participated in a telemonitoring program. However, both studies were judged with a high risk of bias due to attrition, the randomization process and the lack of blinding which was not described. A complementary care intervention, a focused narrative interview and a telemonitoring program identified improvement in anxiety after each time the intervention was provided. However, no significant differences between intervention and control group were found., Conclusion: Although there is no firm evidence due to the high risk of bias, two studies showed that nurses could play a meaningful role in the management of anxiety with regard to early recognition and even in a specific set of psychotherapeutic interventions. Obviously, interventions should be adapted to the underlying cause of anxiety. However, the results of this systematic literature review show a limited degree of evidence to realize this goal. Future research should focus on the interpretation of the findings in order to understand why certain interventions are effective. Furthermore, clarification of which nurse competencies are needed to perform these interventions successfully must be defined. Nevertheless, this systematic literature review encourages nurses to take a key role in the management of anxiety and shows that it is worthwhile to investigate the difference that can be made by nurses in supporting advanced cancer patients with anxiety., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Purpose: To determine the prognostic meaning of symptoms in patients with advanced cancer., Design: Medline, Embase, Cochrane and Cinahl databases were systematically explored. The predicting symptoms were also evaluated in the three stages of palliative care: disease-directed palliation, symptom-oriented palliation and palliation in the terminal stage., Results: Out of 3167 papers, forty-four papers satisfied all criteria. Confusion, anorexia, fatigue, cachexia, weight loss, cognitive impairment, drowsiness, dyspnea, dysphagia, dry mouth and depressed mood were associated with survival in ≥ 50% of the studies evaluating these symptoms. Multivariate analysis showed confusion, anorexia, fatigue, cachexia, weight loss, dyspnea and dysphagia as independent prognostic factors in 30-56% of the studies. In the stage of disease-directed palliation anorexia, cachexia, weight loss, dysphagia and pain and in the stage of symptom-oriented palliation confusion, fatigue, cachexia, weight loss, dyspnea, dysphagia and nausea were shown to be independent predictors of survival in >30% of the studies., Conclusion: Symptoms with independent predictive value are confusion, anorexia, fatigue, cachexia, weight loss, dyspnea and dysphagia. New insights are added by the variance between the three palliative stages., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Background: Health care for cancer patients is primarily shaped by health care professionals. This raises the question to what extent health care professionals are aware of patients' preferences, needs and values.The aim of this study was to explore to what extent there is concordance between patients' preferences in cancer care and patients' preferences as estimated by health care professionals. We also examined whether there were gender differences between health care professionals with regard to the degree in which they can estimate patients' preferences correctly., Methods: To obtain unbiased insight into the specific preferences of cancer patients, we developed the 'Cancer patients' health care preferences' questionnaire'. With this questionnaire we assessed a large sample of cancer patients (n = 386). Next, we asked health care professionals (medical oncologists, nurses and policymakers, n = 60) to fill out this questionnaire and to indicate preferences they thought cancer patients would have. Mean scores between groups were compared using Mann-Whitney tests. Effect sizes (ESs) were calculated for statistically significant differences., Results: We found significant differences (ESs 0.31 to 0.90) between patients and professionals for eight out of twenty-one scales and two out of eight single items. Patients valued care aspects related to expertise and attitude of health care providers and accessibility of services as more important than the professionals thought they would do. Health care professionals overestimated the value that patients set on particularly organisational and environmental aspects.We found significant gender-related differences between the professionals (ESs 0.69 to 1.39 ) for eight out of twenty-one scales and two out of eight single items. When there were significant differences between male and female healthcare professionals in their estimation of patients health care preferences, female health care professionals invariably had higher scores. Generally, female health care professionals did not estimate patients' preferences and needs better than their male colleagues., Conclusions: Health care professionals are reasonably well able to make a correct estimation of patients preferences, but they should be aware of their own bias and use additional resources to gain a better understanding of patients' specific preferences for each patient is different and ultimately the care needs and preferences will also be unique to the person.

The suffering of patients with incurable cancer is determined to a large degree by the presence and intensity of the symptoms of their disease. Knowledge of symptom prevalence is important for clinical practice. The main aim of this study was to obtain a reliable estimation of symptom prevalence in patients with incurable cancer by performing a systematic review of studies assessing this topic. We included 44 studies (including 25,074 patients) on overall symptom prevalence (Group 1) and six studies (including 2,219 patients) on symptom prevalence during the last one to two weeks of life (Group 2). In these studies, symptom prevalence was assessed by a questionnaire, a standardized interview, or the medical record. We identified 37 symptoms assessed in at least five studies. Almost all symptoms occurred in more than 10% of the patients. Five symptoms (fatigue, pain, lack of energy, weakness, and appetite loss) occurred in more than 50% of the patients of Group 1. Weight loss occurred significantly more often in Group 2 compared to Group 1, and pain, nausea, and urinary symptoms occurred significantly less often. Generally, symptom prevalence was highest if assessed by a questionnaire. The results of this study should be used to guide doctors and nurses in symptom management. Proper attention to symptom burden and suffering should be the basis for individually tailored treatment aimed at improving or maintaining quality of life of patients in their last period of life.