Validation of the Dutch version of the Edmonton Symptom Assessment System.

BACKGROUND: The Utrecht Symptom Diary (USD) is a Dutch and adapted version of the Edmonton Symptom Assessment System, a patient-reported outcome measurement (PROM) tool to asses and monitor symptoms in cancer patients. This study analyses the validity and responsiveness of the USD and the cutoff points to determine the clinical significance of a symptom score. METHODS: Observational longitudinal cohort study including adult in- and outpatients treated in an academic hospital in the Netherlands who completed at least one USD as part of routine care (2012-2019). The distress thermometer and problem checklist (DT&PC) was used as a reference PROM. Content, construct and criterion validity, responsiveness, and cutoff points are shown with prevalences, area under receiver operating characteristic (ROC) curve, Chi-squared test, Wilcoxon signed-rank test, and positive and negative predictive values, respectively. RESULTS: A total of 3913 patients completed 22 400 USDs. Content validity was confirmed for all added USD items with prevalences of ≥22%. All USD items also present on the DT&PC demonstrated a good criterion validity (ROC >0.8). Construct validity was confirmed for the USD as a whole and for the items dry mouth, dysphagia and well-being (P < .0001). USD scores differed significantly for patients when improving or deteriorating on the DT&PC which confirmed responsiveness. Optimal cutoff points (3 or 4) differed per symptom. CONCLUSION: The USD is a valid 12-item PROM for the most prevalent symptoms in cancer patients, which has content, criterion, and construct validity, and detects clinically important changes over time, in both curative and palliative phase.

Suitable support for anxious hospice patients: what do nurses 'know', 'do' and 'need'? An explanatory mixed method study.

OBJECTIVE: To provide insight into what nurses know, do and need to provide support to anxious patients in hospice care (HC). METHODS: A mixed method study consisted of an online survey and focus groups (FGs) about what nurses know, do, and need was conducted. 336 HC nurses were invited to participate. Descriptive statistics were computed using SPSS. The χ2 and t-tests were conducted to compare. The FGs were transcribed verbatim and thematically analysed. RESULTS: The survey was completed by 265 nurses (79%), and five FGs (n=25) were conducted. Most nurses had >10 years working experience; mean age was 52. The majority (59%) felt that they were equipped with sufficient knowledge; however, lack of knowledge (31%) as well as lack of time (50%) were hampering factors. Identification of anxiety was difficult due to the variety of its expression. Tools for identifying were used by 37%. Interventions were generally chosen intuitively. A major responsibility was experienced in caring for patients with panic attacks during late night shifts, making immediate decisions necessary. CONCLUSION: This study highlights the struggles of nurses caring for anxious patients in HC. Anxiety management is dependent on the competencies and preferences of the individual nurse. One-third of the nurses require additional training. According to HC nurses, the intervention set should include guidelines for applying assessment tools, effective communication strategies and decision models as well as prediction models in order to select tailored interventions. Future research should focus on patients' perspectives in order to understand crucial measures for anxiety management.

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.

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.

Assessment of anxiety in advanced cancer patients: a mixed methods study.

BACKGROUND: Anxiety is a risk for reduced quality of life in advanced cancer patients. However, it is an overlooked symptom without routine use of instruments to assess anxiety. AIM: To gain insight into the use of instruments by nurses to assess anxiety in advanced cancer patients and the rationale behind it. METHODS: Data with regard to nurses' use of instruments were collected from medical records of 154 patients in three settings. Additionally, 12 nurses were interviewed. FINDINGS: Four instruments were used to assess anxiety. The frequency of assessed anxiety differed among settings. The application of instruments guided patient care and improved communication. Lack of knowledge was the main reason not to use instruments. CONCLUSIONS: Application was influenced by patient and environmental factors, knowledge, attitudes and beliefs of nurses. Multifaceted strategies, leadership and education of nurses in the assessment and analysis of anxiety are needed to improve symptom management in advanced cancer patients.