Abstract Context Upper gastrointestinal cancer is associated with a poor prognosis. The multidimensional problems of incurable patients require close monitoring and frequent support, which cannot ...sufficiently be provided during conventional one to two month follow-up visits to the outpatient clinic. Objectives To compare nurse-led follow-up at home with conventional medical follow-up in the outpatient clinic for patients with incurable primary or recurrent esophageal, pancreatic, or hepatobiliary cancer. Methods Patients were randomized to nurse-led follow-up at home or conventional medical follow-up in the outpatient clinic. Outcome parameters were quality of life (QoL), patient satisfaction, and health care consumption, measured by different questionnaires at one and a half and four months after randomization. As well, cost analyses were done for both follow-up strategies in the first four months. Results In total, 138 patients were randomized, of which 66 (48%) were evaluable. At baseline, both groups were similar with respect to clinical and sociodemographic characteristics and health-related QoL. Patients in the nurse-led follow-up group were significantly more satisfied with the visits, whereas QoL and health care consumption within the first four months were comparable between the two groups. Nurse-led follow-up was less expensive than conventional medical follow-up. However, the total costs for the first four months of follow-up in this study were higher in the nurse-led follow-up group because of a higher frequency of visits. Conclusion The results suggest that conventional medical follow-up is interchangeable with nurse-led follow-up. A cost utility study is necessary to determine the preferred frequency and duration of the home visits.
Abstract Context The prevalence of neuropathic pain in patients with cancer pain has been estimated to be around 40%. Neuropathic pain may be caused by tumor invasion and is considered as mixed ...nociceptive-neuropathic pain, or caused by an anticancer treatment and considered as purely neuropathic pain. The use of adjuvant analgesics in patients with cancer is usually extrapolated from their efficacy in nononcological neuropathic pain syndromes. Objectives In this systematic review, we sought to evaluate the evidence for the beneficial and adverse effects of pharmacologic treatment of neuropathic cancer pain. Methods A systematic review of the literature in PubMed and Embase was performed. Primary outcome measures were absolute risk benefit (ARB), defined as the number of patients with a defined degree of pain relief divided by the total number of patients in the treatment group, and absolute risk harm (ARH), defined as the fraction of patients who dropped out as a result of adverse effects. Results We identified 30 articles that fulfilled our inclusion criteria. Overall, ARB of antidepressants, anticonvulsants, other adjuvant analgesics, or opioids greatly outweighed ARH. There were no significant differences in ARB or ARH between the four groups of medication or between patients with mixed vs. purely neuropathic pain. Because of the low methodological quality of the studies, we could not draw conclusions about the true treatment effect size of the four groups of medications. Conclusion Once a diagnosis of neuropathic pain has been established in patients with cancer, antidepressants, anticonvulsants, or other adjuvant analgesics should be considered in addition to or instead of opioids.
Abstract 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.
Abstract Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study ...whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract ( P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.
Abstract Context Most deaths in Western countries occur in hospital, but little is known about factors determining the quality of dying (QOD). Objectives The aim was to assess the QOD in hospital as ...experienced by relatives and identify factors related to QOD. Methods A cross-sectional study on 18 wards of a university hospital in The Netherlands was conducted, including relatives of patients who died after an admission of more than six hours, from June 2009 to March 2011. Relatives' perceptions of QOD and quality of care and the relation between dimensions of QOD and overall QOD scores were assessed. Results Two hundred forty-nine relatives participated (51%) and rated overall QOD at 6.3 (SD 2.7; range 0–10). According to relatives, patients suffered from 7.0 (SD 5.8) of 22 symptoms and were at peace with imminent death in 37%. Patients had been aware of imminent death in 26%, and relatives were aware in 49%. Furthermore, 39% of patients and 50% of relatives had said good-bye, and 77% of patients died in the presence of a relative. Symptom alleviation was sufficient in 53%, and in 75%, sufficient efforts had been made to relieve symptoms. Characteristics of QOD and quality of care could be summarized in nine domains, explaining 34% of the variation of QOD scores. Medical, personalized, and supportive care were most strongly related to QOD. Conclusion Relatives rated QOD as sufficient. A majority of patients and relatives were not sufficiently prepared for imminent death, and relatives experienced many problems. QOD appears to be a multidimensional construct, strongly affected by medical care and staff attentiveness.
Abstract Context Fatigue is a multidimensional symptom experienced physically, cognitively, and emotionally. Research on fatigue experiences in various stages of cancer might help to elucidate the ...nature of cancer-related fatigue. Objectives To compare fatigue experiences in advanced cancer patients (ACPs), cancer survivors (CSs), and controls from the general population (GenPop). Methods Sixty-three ACPs (no antitumor therapy in the last month and no options for future therapy) were matched for age, sex and diagnosis with 63 CSs (last treatment one to five years ago) and 315 controls. Fatigue was measured unidimensionally with the Numeric Rating Scale and multidimensionally with the Multidimensional Fatigue Inventory. Results All fatigue levels (general fatigue, physical fatigue, reduced activity, reduced motivation, and mental fatigue) were higher in ACPs than in CSs and controls ( P < 0.01), whereas fatigue levels were not different between CSs and controls. NRS scores in ACPs and CSs were significantly predicted by the fatigue dimensions physical fatigue and mental fatigue only. Although physical fatigue and mental fatigue were strongly related in the GenPop, the relation was weaker in CSs and not significant in ACPs. In multivariate analyses, only physical fatigue differentiated ACPs from CSs and controls ( P < 0.01). Conclusion ACPs experience fatigue more intensely than CSs and controls when fatigue is measured multidimensionally. Although mental and physical dimensions of fatigue contribute to the overall experience of fatigue in both groups of cancer patients, physical fatigue best differentiated ACPs from both CSs and controls.
Abstract Data on the experiences of relatives during continuous palliative sedation are scarce. Because these relatives may be the ones most closely involved with the patient, it is important to ...evaluate the possible burdens that they experience. We aimed to explore and evaluate concerns of relatives during continuous palliative sedation of their family members admitted to an acute palliative care unit. Through retrospective multidisciplinary record research, we obtained data on concerns of the relatives during the period that continuous palliative sedation took place. From October 2001 to October 2004, 45 patients died after starting continuous palliative sedation. In 51% of the cases, the relatives expressed concerns after starting the therapy. Concerns could be distinguished into three main themes: concerns about the aim of continuous palliative sedation (27%), concerns related to the well-being of the patient (29%), and concerns related to the well-being of relatives themselves (18%). Patient and sedation characteristics did not differ significantly between sedations in which relatives did and did not express concerns, except for the duration of the sedation. The median duration of the continuous palliative sedation when concerns were expressed was 46 hours, compared with 19.5 hours when this was not the case ( P < 0.05). Both the nature and extent of the concerns suggest that relatives are in need of continuous information and professional guidance during continuous palliative sedation of their family members. Availability of caregiver guidance and clear process documentation are crucial and indispensable in providing this.
Abstract Adherence to analgesics in cancer patients has scarcely been studied. In this study, the Medication Event Monitoring System (MEMS) and medication diaries were compared with respect to ...feasibility and adherence measurements. Forty-six outpatients with nociceptive pain caused by cancer were asked to use MEMS for their analgesics and to record their medication usage in a diary for four weeks. Seventy-nine percent of the patients used MEMS for the full four-week period; 70% did so for the diary. The majority of patients were satisfied with both MEMS and diary. Adherence data assessed by MEMS and diary were comparable. Patients used the amount of analgesics adequately (taking adherence: 87%) but took them irregularly (timing adherence: 53%). Subgroup analyses in patients using single and multiple analgesic regimens confirmed the comparable suitability of both methods. MEMS and a medication diary are equally useful for analgesic adherence measurement in cancer patients with pain.
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