Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION:  Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.

A grounded theory study on the dynamics of parental grief during the children's end of life.

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.

Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

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.

The Effect of the COVID-19 Pandemic on Grief Experiences of Bereaved Relatives: An Overview Review.

The COVID-19 pandemic has disrupted grief experiences of bereaved relatives and altered accustomed ways of coping with loss. To understand how bereaved relatives experienced grief during COVID-19, a review, using the overview method, was conducted. An overview of empirical data about this subject has been lacking and therefore, PubMed and CINAHL databases were searched for empirical studies published from January 1, 2020 until December 31, 2021. 28 articles were included in the review. Thematic analysis showed different emotional responses, changes in grief, the effect of absence during final moments, a lack of involvement in the caring process, the impact on communities and social support systems and the alteration of funerals among bereaved relatives. During COVID-19, death is characterized by poor bereavement outcomes and health implications, but bereaved also show signs of resilience and coping. Directions for future research about cultural and societal differences in grief and support methods are suggested.

Determinants of unbearable suffering in hospice patients who died due to Euthanasia: A retrospective cohort study.

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.

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories.

BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).

Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review.

BACKGROUND: Glioma patients suffer from a wide range of symptoms which influence quality of life negatively. The aim of this review is to give an overview of symptoms most prevalent in glioma patients throughout the total disease trajectory, to be used as a basis for the development of a specific glioma Patient Reported Outcome Measure (PROM) for early assessment and monitoring of symptoms in glioma patients. METHODS: A systematic review focused on symptom prevalence in glioma patients in different phases of disease and treatment was performed in MEDLINE, CINAHL and EMBASE according to PRISMA recommendations. We calculated weighted means for prevalence rates per symptom. RESULTS: The search identified 2.074 unique papers, of which 32 were included in this review. In total 25 symptoms were identified. The ten most prevalent symptoms were: seizures (37%), cognitive deficits (36%), drowsiness (35%), dysphagia (30%), headache (27%), confusion (27%), aphasia (24%), motor deficits (21%), fatigue (20%) and dyspnea (20%). CONCLUSIONS: Eight out of ten of the most prevalent symptoms in glioma patients are related to the central nervous system and therefore specific for glioma. Our findings emphasize the importance of tailored symptom care for glioma patients and may aid in the development of specific PROMs for glioma patients in different phases of the disease.

The predictive value of symptoms for anxiety in hospice inpatients with advanced cancer.

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.

Being Seen as a Unique Person is Essential in Palliative Care at Home and Nursing Homes: A Qualitative Study With Patients and Relatives.

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.

The prevalence and intensity of late effects in patients with testicular germ cell tumors: A first step of instrument development using a stepwise approach.

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.

Healthcare professionals' perceived barriers in providing palliative care in primary care and nursing homes: a survey study.

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.

Use of preventive medication and supplements in general practice in patients in their last year of life: a Retrospective cohort study.

BACKGROUND: Several preventive medications and supplements become inappropriate in the last phase of life due to increased risk of adverse events caused by changed pharmacokinetics, drug-drug interactions, and changed care goals. Information on these preventive medication and supplements use in patients with a life-limiting illness in the home-care setting is limited. The primary aim of this study was to assess the use of four different groups of preventive drugs and supplements, which are inappropriate in adult patients with a life-limiting illness, living at home in the last year of life. The secondary aims were to assess reasons for discontinuing these drugs as documented in the general practitioners' patient file and whether these reasons affected the time between medication discontinuation and death. METHODS: We performed a retrospective cohort study using the routine primary care database of the Julius General Practitioners' Network of the University Medical Centre Utrecht, a database consisting of routine care data from GPs from the city of Utrecht and its vicinity. Patients in the homecare setting with a life-limiting illness, diagnosed at least one year before death, were included. Descriptive analyses were used to describe the study population and the frequency of starting, using, and discontinuing medication and supplements in the last year of life. RESULTS: A total of 458 of 666 included patients (69%) used at least one preventive drug in the last year of life. Vitamins were used by 36% of the patients, followed with 35% using cholesterol-lowering medication, 24% using calcium supplements and 9% using bisphosphonates. Bisphosphonates were discontinued by 70% of the users, calcium supplements by 61%, vitamins by 56% and cholesterol-lowering medication by 48% of the users, with a median interval between day of discontinuation and death of 119, 60, 110 and, 65 days, respectively. The median time between medication or supplement discontinuation and death was longest in patients with side effects and who had medication reviews. CONCLUSION: Many patients in their last phase of life in the home-care setting use inappropriate medication and supplements. Timely medication review may contribute to optimise medication use in the last year of life.

Challenges in Preloss Care to Parents Facing Their Child's End-of-Life: A Qualitative Study From the Clinicians Perspective.

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 semistructured 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.

Anxiety in Hospice Inpatients With Advanced Cancer, From the Perspective of Their Informal Caregivers: A Qualitative Study.

Anxiety is a common symptom in patients with advanced cancer. Early recognition of anxiety is difficult, especially when the physical condition of patients declines and patients are not able to verbally express about their concerns. Under these circumstances, informal caregivers may be a valuable source of information. The aim of this study was to explore anxiety in hospice inpatients with advanced cancer from the perspective of their informal caregivers. Fourteen informal caregivers were interviewed; 64% were women and the median age was 55 years. Informal caregivers assessed patients' anxiety as moderate to severe and identified a negative impact of anxiety on physical, psychological, social, and spiritual dimensions of the patients' lives. They indicated a variety of expressions of anxiety and mentioned physical and mental deterioration as an important source of anxiety. Informal caregivers recognized patients' needs as having a safe environment, presence of people around, and a sense of control over the situation. Although the patients' perspective is the gold standard, informal caregivers can be a valuable source of information in identifying anxiety and providing personalized support. Therefore, informal caregivers should be more involved in the care for anxious patients to improve early recognition of anxiety and to ameliorate anxiety management for this vulnerable patient population.

Use of a Symptom Diary on Oncology Wards: Effect on Symptom Management and Recommendations for Implementation.

BACKGROUND: Management of symptoms is essential in reducing the symptom burden of cancer patients. The effect of symptom diaries on symptom management to date has been evaluated only in ambulatory settings. OBJECTIVE: The aims of this study were to identify the key facilitators for successful implementation of symptom diaries on oncology wards from patients' and professionals' perspectives and to evaluate implementation outcomes. METHODS: In 2 cycles of action research, the Utrecht Symptom Diary (USD) was implemented on 3 oncology wards and a daycare unit. Key facilitators for implementation were identified by thematic coding of interviews. The effect of the implementation was evaluated in cycle II in a pretest-posttest design. We performed statistical tests (Mann-Whitney/t test/χ2) on Symptom Management Performance items in questionnaires and medical records. RESULTS: We interviewed 25 patients, 8 doctors, and 25 nurses. Seven key facilitators for implementation emerged. After implementation of the USD in cycle II, Symptom Management Performance was significantly (P < .05) improved for patients (3/12 items, n = 33 pretest/26 posttest) and professionals (6/12 items, n = 21 pretest/19 posttest). Significantly more symptoms (P = .00), working hypotheses (P = .023), treatment plans (P = .00), and interventions (P = .00) were reported (n = 47 pretest/47 posttest). CONCLUSIONS: Implementation of the USD significantly improved symptom management in oncology wards. We recommend (1) using a diagnosis-specific diary; (2) making clear, individualized working-arrangements; (3) training professionals; (4) using the plan-do-check-act cycle; (5) acting multidisciplinary; (6) providing guidelines and training; and (7) assuring adequate information communications technology (ICT). IMPLICATIONS: Symptom diaries are increasingly used, but implementation is challenging. This study provides knowledge on their benefits and an evidence-based strategy for implementation with positive outcomes achieved in patient care.

Health Care Professionals' Experiences With Preloss Care in Pediatrics: Goals, Strategies, Obstacles, and Facilitators.

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.

Gender-related needs and preferences in cancer care indicate the need for an individualized approach to cancer patients.

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.

Are health care professionals able to judge cancer patients' health care preferences correctly? A cross-sectional study.

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.

Predicting Anxiety in Hospitalized Cancer Patients.

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.

Who Are Hospice Patients and What Care Is Provided in Hospices? A Pilot Study.

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.