Evaluation of an online tool about the expected course of disease for glioblastoma patients - A qualitative study

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

Exploring the Psychosocial Needs of Adolescents Whose Parent Is Diagnosed With Breast Cancer

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.</p

Cancer care during the Covid-19 pandemic from the perspective of patients and their relatives:A qualitative study

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.</p

Large expert-curated database for benchmarking document similarity detection in biomedical literature search

Document recommendation systems for locating relevant literature have mostly relied on methods developed a decade ago. This is largely due to the lack of a large offline gold-standard benchmark of relevant documents that cover a variety of research fields such that newly developed literature search techniques can be compared, improved and translated into practice. To overcome this bottleneck, we have established the RElevant LIterature SearcH consortium consisting of more than 1500 scientists from 84 countries, who have collectively annotated the relevance of over 180 000 PubMed-listed articles with regard to their respective seed (input) article/s. The majority of annotations were contributed by highly experienced, original authors of the seed articles. The collected data cover 76% of all unique PubMed Medical Subject Headings descriptors. No systematic biases were observed across different experience levels, research fields or time spent on annotations. More importantly, annotations of the same document pairs contributed by different scientists were highly concordant. We further show that the three representative baseline methods used to generate recommended articles for evaluation (Okapi Best Matching 25, Term Frequency-Inverse Document Frequency and PubMed Related Articles) had similar overall performances. Additionally, we found that these methods each tend to produce distinct collections of recommended articles, suggesting that a hybrid method may be required to completely capture all relevant articles. The established database server located at https://relishdb.ict.griffith.edu.au is freely available for the downloading of annotation data and the blind testing of new methods. We expect that this benchmark will be useful for stimulating the development of new powerful techniques for title and title/abstract-based search engines for relevant articles in biomedical research.Peer reviewe

Home telemonitoring improved pain registration in patients with cancer

Introduction: For adequate pain treatment in patients with cancer, it is important to monitor and evaluate pain regularly. Although the numeric rating scale (NRS) is implemented in hospitals in the Netherlands, pain is still not systematically registered during outpatient consultations. The aim of this study was to assess whether home telemonitoring increases pain registration in medical records of outpatients with cancer. Methods: Patients with cancer were included in the intervention group (IG) when they visited the outpatient clinic. They received a short message service and an interactive voice response on their mobile phones 3 times a week, asking them to provide their pain score (NRS). When the reported NRS pain score was ≥5, a specialized oncology nurse adapted the pain treatment when necessary. Outcomes were compared to a control group (CG) without home telemonitoring. In both groups, medical records were analyzed and data on pain and analgesics were collected. Results: In each group, the medical records of 54 patients were analyzed on 3 consecutive outpatient visits. In the CG, pain registration or its absence was described in 60 visits (37.0%). In the IG, pain registration or its absence was reported in 83 visits (51.2%). Patients in the IG received a prescription for analgesics significantly more often (36/54 patients [66.6%]) than did patients in the CG (18/54 patients [33.3%]), P &lt; 0.01). Conclusion: Home telemonitoring for patients with cancer significantly increases registration of pain and prescriptions of analgesics in outpatient medical records. Home telemonitoring helps to increase the awareness of pain and its management.Medical Instruments & Bio-Inspired Technolog

A Delphi Study of Core Patient-Reported Outcomes for Advanced Renal Cell Carcinoma and Advanced Hepatocellular Carcinoma

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

Hydration and symptoms in the last days of life

Objectives At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. Methods A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected. Results 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48-25 hours before death. Conclusions Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48-25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial

The effects of analgesic prescription and patient adherence on pain in a Dutch outpatient cancer population

Insufficient awareness of cancer Pain, including breakthrough pain, inadequate analgesic prescriptions, and nonadherence contribute to inadequate cancer pain management. There are insufficient data about the contribution of each of these factors. In a cross-sectional survey among 915 adult cancer outpatients, pain was assessed by the Brief Pain Inventory. Breakthrough pain was defined as a worst pain intensity rated as "7 or more" and an average pain intensity rated as "6 or less" in patients on "around-the-clock" (ATC) analgaesics. The Pain Management Index (PMI) was calculated to measure the quality of treatment. Adherence was considered inadequate when below 100% of the dose prescribed. Pain was present in 27% of patients. Worst pain was rated as moderate in 26%, and as severe in 54%. Breakthrough pain was present in 45% of patients with ATC medication. The PMI indicated inadequate treatment in 65% of patients. The proportions of patients adherent to ATC analgesics varied from 59% (tramadol) to 91% (Step 3 opioids). The management of cancer pain will benefit most from improving analgesic prescriptions and patient adherence