To Be In Pain Or Not: research to improve cancer-related pain management

Cancer is a growing problem. In the Netherlands, the twenty years prevalence of cancer is rising during the years. In 1990, 223 540 persons were living with cancer (twenty years prevalence). In 2002, the twenty years prevalence was 386 361 persons, and in 2010 540 371 persons. The prevalence of cancer increased with 3% – 3.5% per year since 1990. This increase was mainly provoked by an increase in the national population, especially elderly. In cancer patients, pain is one of the most frequent and feared symptoms. Pain can interfere with all aspects of daily life and pain relief is an important component of patients’ quality of life. The prevalence of cancer-related pain remained stable over the years, although the knowledge on pain treatment did improve. For cancer patients with all disease stages, the studies before 1990 showed that the prevalence of cancer-related pain varied between 41% - 72%4-5, of whom 35% scored their pain as moderate to severe (pain intensity score ≥ 5). The studies between 1990 and 2005 showed a prevalence between 28% - 87%, of whom between 23% - 65% scored their pain as moderate to severe, and studies after 2005 reported a prevalence of 52% - 72%, of whom between 20% - 56% scored their pain as moderate to severe. The prevalence of pain in cancer patients is related to the stage of cancer. The review of Van den Beuken et al. showed that the prevalence of cancer-related pain was 33% (95% Confi dence Interval (CI) 21-46%) in cancer patients after curative treatment (n=726); 59% (95% CI 44-73%) in patients during anti-cancer treatment (n=1408); and 64% (95% CI 58-69%) in patients with advanced disease (n=9763). Cancer-related pain can be caused by (a) the direct growth and penetrat

The inner struggle of nurses, exploring moral distress among hospital nurses:A cross-sectional study

Background: As frontline caregivers, nurses often find themselves at the crossroads of complex ethical decisions that can significantly impact patient outcomes and their own well-being. Identifying the areas of experienced moral dilemmas in the workplace and gaining insight into the prevalence of moral distress can lead to a healthier workplace environment. Objective: This study aims to examine the frequency, intensity and level of moral distress among nurses who work in a hospital, and to identify the variables associated with the level of moral distress. Design: Cross-sectional study. Setting: One university hospital and six general hospitals. Participants: 654 of the 1095 nurses working on inpatient units filled out the questionnaire (response rate 60 %). Methods: The intensity and frequency of moral distress was assessed using the Moral Distress Scale-Revised (MDS-R). We also asked two additional questions about considering leaving their job, and if they could describe a distressing case and how moral distress was discussed. Multivariable regression analysis was conducted to identify the variables associated with the level of moral distress. Results: The overall mean MDS-R score of the 654 included nurses was low at 36.4 (SD 26). Nurses reported to have frequent dilemmas regarding organizational aspects and aspects of end-of-life care. The multivariable analyses showed that higher levels of moral distress were experienced by registered nurses, nurses working on a medical ward, and nurses who had ever left or considered leaving their job, or considering leaving their job at the moment. Conclusions: Although nurses in our study experiences low levels of moral distress, they do experience moral dilemmas related to organizational topics and end of life care. We all need to pay attention to these dilemmas and how to discuss them in order to achieve a resilient nursing profession at a time of major nursing shortages. </p

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

Development and feasibility of a web application to monitor patients’ cancer-related pain

Background: In the outpatient setting, pain management is often inadequate in patients with cancer-related pain, because of patient- and professional-related barriers in communication and infrequent contacts. The internet may provide new opportunities for monitoring these patients. Purpose: The purpose of this study was to investigate whether internet monitoring of cancer-related pain in outpatients was feasible. Methods: We developed an internet application that contained a pain diary, eConsult, and patient pain education. In the pain diary, patients scored their pain intensity (0–10 Numeric Rating Scale) and analgesic use daily and their side effects twice a week. Feasibility was defined as the percentage of diaries patients completed during the first 6 weeks. Results: We included 100 outpatients. Sixteen were not evaluable due to cognitive problems (2); withdrawal of participation (2); internet problems (2), or because they were too ill (10). During the first 6 weeks, 60% of 84 evaluable patients completed their diary for at least 65% of the days (median number of diaries, 21; range, 3–42) and asked for a median of five eConsults (range, 0–37). Patients most frequently used an eConsult for questions about pain or side effects, how to use their analgesics and to improve their self-management. Over the 6-week period, current pain intensity decreased from 3.3 (SD = 2) to 2.5 (SD = 1.6, p = 0.005), and worst pain intensity decreased from 5.7 (SD = 2) to 3.8 (SD = 2.0, p < 0.001). Conclusion: Internet monitoring of pain is feasible in most outpatients with cancer-related pain. The frequent use of the pain diary in the majority of patients indicates that those patients felt confident with the regular assessment of pain

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

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 < 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 managemen

Cut points on 0-10 numeric rating scales for symptoms included in the edmonton symptom assessment scale in cancer patients: A systematic review

Context: To improve the management of cancer-related symptoms, systematic screening is necessary, often performed by using 0-10 numeric rating scales. Cut points are used to determine if scores represent clinically relevant burden. Objectives: The aim of this systematic review was to explore the evidence on cut points for the symptoms of the Edmonton Symptom Assessment Scale. Methods: Relevant literature was searched in PubMed, CINAHL®, Embase, and PsycINFO®. We defined a cut point as the lower bound of the scores representing moderate or severe burden. Results: Eighteen articles were eligible for this review. Cut points were determined using the interference with daily life, another symptom-related method, or a verbal scale. For pain, cut point 5 and, to a lesser extent, cut point 7 were found as the optimal cut points for moderate pain and severe pain, respectively. For moderate tiredness, the best cut point seemed to be cut point 4. For severe tiredness, both cut points 7 and 8 were suggested frequently. A lack of evidence exists for nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath. Few studies suggested a cut point below 4. Conclusion: For many symptoms, there is no clear evidence as to what the optimal cut points are. In daily clinical practice, a symptom score ≥4 is recommended as a trigger for a more comprehensive symptom assessment. Until there is more evidence on the optimal cut points, we should hold back using a certain cut point in quality indicators and be cautious about strongly recommending a certain cut point in guidelines

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