Psychosocial interventions for fatigue during cancer treatment with palliative intent.

BACKGROUND: Fatigue is a prevalent and burdensome symptom for patients with incurable cancer receiving cancer treatment with palliative intent and is associated with reduced quality of life. Psychosocial interventions seem promising for management of fatigue among cancer patients. OBJECTIVES: To assess the effects of psychosocial interventions for fatigue in adult patients with incurable cancer receiving cancer treatment with palliative intent. SEARCH METHODS: We searched the following databases: CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, and seven clinical trial registries; we also searched the reference lists of articles. The date of our most recent search was 29 November 2016. SELECTION CRITERIA: We included randomised controlled trials that compared psychosocial interventions in adults aged 18 years or over undergoing cancer treatment with palliative intent for incurable cancer versus usual care or other controls. Psychosocial interventions were defined as various kinds of interventions provided to influence or change cognitions, emotions, behaviours, social interactions, or a combination of these. Psychosocial interventions of interest to this review had to involve at least two interactions between the patient and the care provider in which the care provider gave the patient personal feedback concerning changes sought by these interventions. We included trials that reported fatigue as an outcome of interest. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. Two review authors independently considered trials for inclusion in the review, assessed risk of bias, and extracted data, including information on adverse events. We assessed the quality of evidence using GRADE (Grading of Recommendations Assessment, Development, and Evaluation) and created a 'Summary of findings' table. MAIN RESULTS: We identified 14 studies (16 reports) that met inclusion criteria for this review and involved 3077 randomised participants in total. Most of these studies included a mixed sample of participants; we obtained data for the subset of interest for this review (diagnosis of incurable cancer and receiving cancer treatment) from the study investigators of 12 studies, for which we included 535 participants in the subset meta-analysis for fatigue post intervention. Researchers investigated a broad range of psychosocial interventions with different intervention aims and durations. We identified sources of potential bias, including lack of description of methods of blinding and allocation concealment and inclusion of small study populations.Findings from our meta-analysis do not support the effectiveness of psychosocial interventions for reducing fatigue post intervention (standardised mean difference (SMD) -0.25, 95% confidence interval (CI) -0.50 to 0.00; not significant; 535 participants, 12 studies; very low-quality evidence). First follow-up findings on fatigue suggested benefit for participants assigned to the psychosocial intervention compared with control (SMD -0.66, 95% CI -1.00 to -0.32; 147 participants, four studies; very low-quality evidence), which was not sustained at second follow-up (SMD -0.41, 95% CI -1.12 to 0.30; not significant; very low-quality evidence).Results for our secondary outcomes revealed very low-quality evidence for the efficacy of psychosocial interventions in improving physical functioning post intervention (SMD 0.32, 95% CI 0.01 to 0.63; 307 participants, seven studies). These findings were not sustained at first follow-up (SMD 0.37, 95% CI -0.20 to 0.94; not significant; 122 participants, two studies; very low-quality evidence). Findings do not support the effectiveness of psychosocial interventions for improving social functioning (mean difference (MD) 4.16, 95% CI -11.20 to 19.53; not significant; 141 participants, four studies), role functioning (MD 3.49, 95% CI -12.78 to 19.76; not significant; 143 participants, four studies), emotional functioning (SMD -0.11, 95% CI -0.56 to 0.35; not significant; 115 participants, three studies), or cognitive functioning (MD -2.23, 95% CI -12.52 to 8.06; not significant; 86 participants, two studies) post intervention. Only three studies evaluated adverse events. These studies found no difference between the number of adverse events among participants in the intervention versus control group.Using GRADE, we considered the overall quality of evidence for our primary and secondary outcomes to be very low. Therefore, we have very little confidence in the effect estimate, and the true effect is likely to be substantially different from the estimate of effect. Limitations in study quality and imprecision due to sparse data resulted in downgrading of the quality of data. Additionally, most studies were at high risk of bias owing to their small sample size for the subset of patients with incurable cancer (fewer than 50 participants per arm), leading to uncertainty about effect estimates. AUTHORS' CONCLUSIONS: We found little evidence around the benefits of psychosocial interventions provided to reduce fatigue in adult patients with incurable cancer receiving cancer treatment with palliative intent. Additional studies with larger samples are required to assess whether psychosocial interventions are beneficial for addressing fatigue in patients with incurable cancer.

Consistency of medical record reporting of a set of indicators for proactive palliative care in patients with chronic obstructive pulmonary disease.

To identify patients hospitalized for an acute exacerbation of chronic obstructive pulmonary disease (COPD) who have a poor prognosis and might benefit from proactive palliative care, a set of indicators had been developed from the literature. A patient is considered eligible for proactive palliative care when meeting ≥2 criteria of the proposed set of 11 indicators. In order to develop a doctor-friendly and patient-convenient tool, our primary objective was to examine whether these indicators are documented consistently in the medical records. Besides, percentage of patients with a poor prognosis and prognostic value were explored. We conducted a retrospective medical record review of 33 patients. Five indicators; non-invasive ventilation (NIV), comorbidity, body mass index (BMI), previous admissions for acute exacerbation COPD and age were always documented. Three indicators; hypoxaemia and/or hypercapnia, professional home care and actual forced expiratory volume1% (FEV1%) were documented in more than half of the records, whereas the clinical COPD questionnaire (CCQ), medical research council dyspnoea (MRC dyspnoea) and the surprise question were never registered. Besides, 78.8% of the patients met ≥2 criteria and there was a significant association between meeting ≥2 criteria and mortality within 1 year (one-sided Fisher's exact test, p = 0.04). The set of indicators for proactive palliative care in patients with COPD appeared to be user-friendly and feasible.

Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme.

BACKGROUND: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. METHODS: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. RESULTS: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. CONCLUSION: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them.

A prospective analysis on fatigue and experienced burden in informal caregivers of cancer patients during cancer treatment in the palliative phase.

BACKGROUND: Although fatigue is the most frequently occurring symptom in patients with cancer, hardly anything is known about fatigue of their informal caregivers and the impact fatigue might have on perceived burden with providing care. We investigated the presence of fatigue in caregivers, its course and the relation of fatigue severity between caregivers and patients. Furthermore, we explored in caregivers whether fatigue severity was correlated to experienced burden. MATERIAL AND METHODS: Informal caregivers and patients on cancer treatment in the palliative phase completed questionnaires at baseline and follow-up (6 months later). To measure fatigue severity, both groups completed the Checklist Individual Strength. Additionally, caregivers completed the Caregivers Strain Index to assess experienced burden with providing care. Descriptive analyses, paired t-tests, χ(2)-tests, Pearson's correlations and regression analysis were performed. RESULTS: At baseline 111 couples (patients and caregivers) participated, at follow-up 75 couples. At both time points 23% of caregivers were severely fatigued. There was no significant correlation between patients and caregivers on fatigue. Higher fatigue in both patients and caregivers was correlated with higher burden in caregivers and over 30% of burden could be explained by fatigue. CONCLUSION: Almost a quarter of caregivers of patients on active palliative treatment were severely fatigued, which figure remained stable over time. Fatigue in both patients and caregivers was related to caregivers' burden. This observation should be taken into account with the growing demand on caregivers and the increase in cancer treatment options in the palliative setting.

Side effects of analgesia may significantly reduce quality of life in symptomatic multiple myeloma: a cross-sectional prevalence study.

BACKGROUND: Pain is a common symptom in patients with multiple myeloma (MM). Many patients are dependent on analgesics and in particular opioids, but there is limited information on the impact of these drugs and their side effects on health-related quality of life (HRQoL). METHOD: In a cross-sectional study, semi-structured interviews were performed in 21 patients attending the hospital with symptomatic MM on pain medications. HRQoL was measured using items 29 and 30 of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. RESULTS: Patients were able to recall a median of two (range 0-4) analgesics. They spontaneously identified a median of two (range 1-5) side effects attributable to their analgesic medications. Patients' assessment of HRQoL based on the EORTC QLQ-C30 questions 29/30 was mean 48.3 (95 % CI; 38.7-57.9) out of 100. Patients' assessment of their HRQoL in the hypothetical situation, in which they would not experience any side effects from analgesics, was significantly higher: 62.6 (53.5-71.7) (t test, p = 0.001). CONCLUSION: This study provides, for the first time, evidence that side effects of analgesics are common in symptomatic MM and may result in a statistically and clinically significant reduction of self-reported HRQoL.

The Practice of Continuous Palliative Sedation in Long-Term Care for Frail Patients with Existential Suffering.

Some guidelines and recommendations identify existential suffering as a potential refractory symptom for which continuous palliative sedation (CPS) can be administered under certain conditions. However, there has been little research on the characteristics of patients with existential suffering treated with CPS and the degree to which the preconditions are fulfilled. The aim of this study was to provide insight into this specific indication for CPS. Questionnaires were sent to nursing home physicians in The Netherlands, who described 314 patients. Existential suffering was a refractory symptom in 83 of the patients. For most of the patients with refractory existential suffering, other refractory symptoms were also reported, and life expectancy was seven days or less; informed consent for initiating CPS had been obtained in all cases. Consultation and intermittent sedation before the start of CPS were far less frequently reported than one would expect based on the guidelines. Multivariate analysis showed that being male, having previously requested euthanasia, having a nervous system disease, or having an other diagnosis were positively correlated with the administration of CPS for existential suffering. We conclude that more attention should be paid to the suggested preconditions and to the presence of existential suffering in male patients or patients with a nervous system disease.

Exploring the contribution of psychosocial factors to fatigue in patients with advanced incurable cancer.

OBJECTIVE: Fatigue is the most frequently occurring and distressing symptom in patients with advanced cancer, caused by multiple factors. Neither a specific histological diagnosis of malignancy nor the type of anticancer treatment seem to be strongly related to fatigue, which support the idea that other factors may play a role. This study investigated to what extent the model of fatigue-perpetuating factors that is known for cancer survivors was applicable for patients with advanced cancer. METHODS: Patients on active treatment for various incurable cancers were asked to complete the Checklist Individual Strength, subscale fatigue severity and physical activity, the Acceptance scale of the Illness Cognition Questionnaire, the Hospital Anxiety and Depression Scale, the Fatigue Catastrophizing Scale, the Symptom Checklist subscale sleep, and the van Sonderen Social Support List-Discrepancies. RESULTS: The questionnaires were filled in by 137 patients. Inappropriate coping, fear of progression, fatigue catastrophizing, discrepancies in social support, depressive mood, self reported physical activity, and sleeping problems were all related to fatigue severity in univariate analyses, of which the latter two were significant in a multivariate linear regression analysis. CONCLUSION: This study tested fatigue-perpetuating factors known to be of relevance in cancer survivors, for their relation with fatigue severity in palliative patients. We demonstrated that these factors were also relevant for patients on palliative treatment. On the basis of our results, we suggest clinicians confronted with palliative patients with serious fatigue to address sleeping problems and promote physical activity. In case of persistent fatigue, personalized cognitive behavioral therapy can be considered.

PROLONG: a cluster controlled trial to examine identification of patients with COPD with poor prognosis and implementation of proactive palliative care.

BACKGROUND: Proactive palliative care is not yet common practice for patients with COPD. Important barriers are the identification of patients with a poor prognosis and the organization of proactive palliative care dedicated to the COPD patient. Recently a set of indicators has been developed to identify those patients with COPD hospitalized for an acute exacerbation who are at risk for post-discharge mortality. Only after identification of these patients with poor prognosis a multi disciplinary approach to proactive palliative care with support of a specialized palliative care team can be initiated. METHODS/DESIGN: The PROLONG study is a prospective cluster controlled trial in which 6 hospitals will participate. Three hospitals are selected for the intervention condition based on the presence of a specialized palliative care team. The study population consists of patients with COPD and their main informal caregivers. Patients will be included during hospitalization for an acute exacerbation. All patients in the study receive standard care (usual care). Besides, patients in the intervention condition who meet two or more criteria of the set of indicators for proactive palliative care will have additionally regular consultations with a specialized palliative care team. The objectives of the PROLONG study are: 1) to assess the discriminating power of the proposed set of indicators (indicator study) and 2) to assess the effects of proactive palliative care for qualifying patients with COPD on the wellbeing of these patients and their informal caregivers (intervention study). The primary outcome measure of the indicator study is time to death for any cause. The primary outcome measure of the intervention study is the change in quality of life measured by the St George Respiratory Questionnaire (SGRQ) three months after inclusion. DISCUSSION: The PROLONG study may lead to better understanding of the conditions to start and the effectiveness of proactive palliative care for patients with COPD. Innovative aspects of the PROLONG study are the use of a set of indicators for proactive palliative care, the active involvement of a specialized palliative care team and the use of a patient-tailored proactive palliative care plan. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NTR4037.

Treatment for neuropathic pain in patients with cancer: comparative analysis of recommendations in national clinical practice guidelines from European countries.

INTRODUCTION: Neuropathic pain is a common symptom, present in 39% of the patients with cancer pain. Treating this type of pain is challenging, as this patient group is often frail and has comorbidities which increase the risk of side events and hence influences their quality of life. Clinical practice guidelines (CPGs) can be helpful for clinicians, especially when scientific evidence is uncertain or weak. In this study, we focused on the quality of the review of the literature used in treatment recommendations in the selected European CPGs. METHODS: In a previous study, 9 CPGs from European countries that contained at least one paragraph on treatment for neuropathic pain in cancer were included. Recommendations with their grade (according SIGN 55 classification) and supporting literature (first author, patients' population, year and type of publication) were compared between CPGs. RESULTS: In all CPGs, amitriptylin was mentioned as the drug of first choice. Six guidelines proposed also gabapentinoids. Only 30 of the 163 citations (18%) were based on studies in patients with cancer. Seven CPGs did not argue the indirect evidence due to extrapolation of study results from non-cancer to patients with cancer. CONCLUSION: The majority of guideline development groups extrapolated their results from non-cancer publications to formulate recommendations. Consequently, these guidelines fail to address important issues such as altered kinetics and side effect profiles in these patients. We recommend creating specific recommendations by an international expert group for the treatment for neuropathic pain in patients with cancer supported by targeted research in patients with cancer.

Guidelines for neuropathic pain management in patients with cancer: a European survey and comparison.

UNLABELLED: Between 19% and 39% of patients with cancer pain suffer from neuropathic pain. Its diagnosis and treatment is still challenging. Yet, national clinical practice guidelines (CPGs) have been developed in several European countries to assist practitioners in managing these patients safely and legally. The aim of this study was to assess the quality of the development and reporting of these CPGs. METHODS: In collaboration with the European Federation of IASP Chapters, a European inventory of CPGs was conducted. Inclusion criteria were at least one paragraph dedicated to the treatment of neuropathic pain in cancer. Using the Appraisal of Guidelines, Research and Evaluation II instrument, 2 appraisers independently assessed the quality of the development process of the included CPGs in 6 quality domains. Besides, CPGs developed by governmental organization were compared with those developed by professional societies using t-tests. RESULTS: Mean scores of the domains "scope and purpose" (80%) and "clarity of presentation" (61%) were satisfactory, "stakeholder involvement" (58%), "rigor of development" (57%), and "editorial independence" (53%) were acceptable, and "applicability" was insufficient (39%). Governmental guidelines had higher quality scores than professional society guidelines for domain "stakeholder involvement" and "editorial independence" (P < 0.01). CONCLUSIONS: The quality of the development process of the 9 included CPGs varied widely. CPGs should be developed within a structured guideline program, including methodological support. As developing a CPG is expensive and time-consuming, we recommend more international cooperation to increase quality and lower the development costs.

Diagnosing neuropathic pain in patients with cancer: comparative analysis of recommendations in national guidelines from European countries.

BACKGROUND: Neuropathic pain is a prevalent symptom in patients with cancer, which needs a more specific algorithm than nociceptive pain or neuropathic pain from other origin. Clinical practice guidelines (CPGs) can be helpful in optimizing the diagnosis of neuropathic pain in patients with cancer. METHODS: In this study, 9 national CPGs in Europe on the diagnosis of neuropathic pain in patients with cancer were included. Recommendations with their grade (according SIGN 55 classification) and supporting literature (first author, patients' population, year, and type of publication) were compared between CPGs. RESULTS: Nine CPGs including recommendations on neuropathic pain could be selected and were assessed. In total, they used 149 references of which 72 (48%) were about cancer conditions, 39 (26%) about neuropathic pain, and only 3 about neuropathic pain in patients with cancer (2%). Only 28 (19%) references were shared between 2 or more guidelines. There was only one shared reference specifically related to cancer neuropathic pain. Recommendations and their evidence grading strongly differ between CPGs. CONCLUSION: This work demonstrates an important heterogeneity between European recommendations on diagnosis and assessment of neuropathic pain in patients with cancer. The main weaknesses are the low level of evidence and the absence of specific data focusing on neuropathic pain in patients with cancer. We recommend that physicians dealing with neuropathic pain in patients with cancer should be specially trained, that a specific methodology to develop CPGs should followed, and that specific research should be developed on the diagnosis of neuropathic pain in patients with cancer.

Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial.

BACKGROUND: According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. METHODS/DESIGN: A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. DISCUSSION: We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. TRIAL REGISTRATION: The Netherlands National Trial Register: NTR2815.

Condition or cognition? Mechanism of change in fatigue in a randomized controlled trial of graded exercise therapy or cognitive behavior therapy for severe fatigue in patients with advanced cancer.

OBJECTIVE: Fatigue remains one of the most common and distressing symptoms during treatment for advanced cancer. The TIRED trial demonstrated cognitive behavior therapy's (CBT) significant and clinically relevant effects to reduce fatigue among patients with advanced cancer, while graded exercise therapy (GET) did not prove beneficial. The present study aims to determine the mechanisms by which CBT and GET affect fatigue. METHOD: The TIRED trial randomized 134 patients with advanced cancer to CBT (n = 46), GET (n = 42), or usual care (n = 46). At 14 weeks, 126 evaluable patients provided fatigue data and of those 117 received ≥1 CBT or GET session or usual care. We tested a prespecified multiple mediation model with four potential mediators (physical activity, exercise capacity, self-efficacy, and fatigue catastrophizing) assessed at baseline and at 14 weeks. Post-hoc analyses also included perceived physical activity and emotional functioning as potential mediators. RESULTS: A total of 82 of 117 patients completed all required measures. CBT reduced fatigue indirectly through its effect on self-efficacy, ab = -3.292; 97.5% bootstrap CI [-6.518 to -0.598]. CBT participants experienced an increase in fatigue self-efficacy, with greater self-efficacy associated with decreased fatigue severity. There was no evidence that changes in physical activity, exercise capacity, perceived physical activity, fatigue catastrophizing, or emotional functioning mediated CBT's or GET's effects on fatigue. CONCLUSIONS: The effect of CBT was attributable to changes in cognition, that is, increased self-efficacy led to reduced fatigue severity. No significant mediators for GET were found. The findings inform further refinement of interventions for fatigue in this seriously ill population. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Training general practitioners contributes to the identification of palliative patients and to multidimensional care provision: secondary outcomes of an RCT.

INTRODUCTION: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs. METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved. RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer. CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure. TRIAL REGISTRATION NUMBER: NTR2815; post results.

Improving prescription in palliative sedation: compliance with dutch guidelines.

BACKGROUND: Two guidelines addressing palliative sedation have been published in the Netherlands in 2002 and 2003. The objective of the present study is to determine adherence to the guidelines for palliative sedation with regard to prescription. The study is restricted to the practice of continuous deep palliative sedation. METHODS: A structured retrospective questionnaire was administered to 1464 physicians concerning their last case of deep sedation during the past 12 months. Physicians included Dutch hospital specialists, general practitioners, and nursing home physicians. RESULTS: The response rate was 36%. A total of 43% (95% confidence interval [CI], 37%-49%) of the responding physicians did not adhere to the guidelines. Sources of deviation were the use of basic medication other than a benzodiazepine (30%), which mostly involved morphine, and omissions in adjuvant medication (13%). Nonsignificant positive association was found for consultation of a palliative care expert (odds ratio [OR], 3.86; 95% CI, 0.92-8.87). Significant positive association was found for the physician being a palliative care expert himself or herself (OR, 4.42; 95% CI, 1.42-13.75) and the use of guidelines (OR, 1.74; 95% CI, 1.02-2.98). Treatment of pain symptoms (OR, 2.21; 95% CI, 1.28-3.82), anxiety (OR, 2.32; 95% CI, 1.33-4.06), vomiting (OR, 6.52; 95% CI, 1.08-39.50), and loss of dignity (OR, 3.93; 95% CI, 1.80-8.58) also correlated positively. Treatment of delirium correlated negatively with adherence to the guidelines (OR, 0.22; 95% CI,0.11-0.44). CONCLUSIONS: The rate of 43% noncompliance to the guidelines was mostly owing to the omission of continued antipsychotic treatment for delirium and the use of morphine as the single therapy for the purpose of deep sedation. Future efforts, like better use and knowledge of the guidelines and a larger involvement of consultation teams, should increase adherence to the guidelines.

Are the effects of cognitive behavior therapy for severe fatigue in cancer survivors sustained up to 14 years after therapy?

PURPOSE: Cognitive behavior therapy (CBT) reduces cancer-related fatigue (CRF) in cancer survivors in the short term. We examined fatigue levels up to 14 years after CBT. METHODS: Eligible participants of two randomized controlled trials who had completed CBT for CRF and a post-treatment assessment were contacted (n = 81). Fatigue was assessed with the subscale "fatigue severity" of the Checklist Individual Strength (CIS-fatigue). The course of fatigue over time was examined with linear mixed model analyses. Fatigue levels of participants were compared to matched population controls at long-term follow-up. We tested with multiple regression analysis if fatigue at follow-up was predicted by the patients' fatigue level and fatigue-perpetuating factors directly after CBT (post-CBT). RESULTS: Seventy-eight persons completed a follow-up assessment (response rate = 96%, mean time after CBT = 10 years). The mean level of fatigue increased from 23.7 (SD = 11.1) at post-CBT to 34.4 (SD = 12.4) at follow-up (p < 0.001). Population controls (M = 23,9, SD = 11.4) reported lower fatigue levels than participants. Half of the patients (52%) who were recovered from severe fatigue at post-CBT (CIS-fatigue < 35) were still recovered at long-term follow-up. Patients with lower fatigue levels at post-CBT were less likely to show relapse. CONCLUSION: Despite initial improvement after CBT, levels of fatigue deteriorated over time. Half of the patients who were recovered from severe fatigue after CBT still scored within normal ranges of fatigue at long-term follow-up. IMPLICATIONS FOR CANCER SURVIVORS: It should be explored how to help patients with a relapse of severe fatigue following an initially successful CBT. They may profit from CBT again, or another evidence-based intervention for fatigue (like mindfulness or exercise therapy). Future research to gain insight into reasons for relapse is warranted.

Differences in the experience of fatigue in patients and healthy controls: patients' descriptions.

BACKGROUND: The primary objective was to develop an adjective checklist, the Fatigue Quality List (FQL), aimed at assessing different perceptions of fatigue. METHODS: 961 participants filled out the FQL (28 adjectives). A component and confirmatory factor analyses were performed and psychometric properties were evaluated. Differences on factor scores between different patients' groups were investigated and pre- and post treatment scores were compared in demonstrating change of perceptions after treatment of fatigue. RESULTS: Four independent factors were found with adequate psychometric properties. Different perceptions were found between the patients' groups. Patients who were recovered after treatment for fatigue showed similar scores on the factors as healthy controls. CONCLUSION: The FQL appears to be a promising tool in measuring different perceptions of fatigue, which can be especially interesting for clinical practice.

Level of Discomfort Decreases After the Administration of Continuous Palliative Sedation: A Prospective Multicenter Study in Hospices and Palliative Care Units.

CONTEXT: A gold standard or validated tool for monitoring the level of discomfort during continuous palliative sedation (CPS) is lacking. Therefore, little is known about the course of discomfort in sedated patients, the efficacy of CPS, and the determinants of discomfort during CPS. OBJECTIVES: To identify the course of discomfort in patients receiving CPS. METHODS: A prospective observational multicenter study in nine hospices and palliative care units was performed. The Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) was independently assessed for monitoring of patient discomfort during CPS. The DS-DAT scores range from 0 (no observed discomfort) to a maximum of 27 (high level of observed discomfort). Using a mixed model, the mean group score of discomfort between four predefined time frames of CPS was compared, correcting for confounding patient characteristics. RESULTS: A total of 130 patients were sedated, and the DS-DAT was completed in 106 patients at least once. The median duration of the sedation in these 106 patients was 25.5 hours (range 2-161). The mean score of the DS-DAT in the phase before sedation was 12.16 (95% CI 9.83-14.50) and decreased significantly to 8.06 (95% CI 5.53-10.58) in the titration phase of sedation. The mean score of the DS-DAT in the final phase of sedation was 7.42 (95% CI 4.90-9.94). CONCLUSION: This study shows that CPS is associated with a decrease in the level of discomfort within an acceptable time frame, although in some sedated patients higher levels of discomfort in the last hours of life occurred. Although the DS-DAT seems to be of value for monitoring the level of discomfort during CPS, the results of this study should be interpreted within the constraints of the limitations, and further research on the psychometric properties of this tool is needed before the DS-DAT can be used in clinical practice.

Patient-Related Determinants of the Administration of Continuous Palliative Sedation in Hospices and Palliative Care Units: A Prospective, Multicenter, Observational Study.

CONTEXT: Knowledge of determinants that are associated with the administration of continuous palliative sedation (CPS) helps physicians identify patients who are at risk of developing refractory symptoms, thereby enabling proactive care planning. OBJECTIVES: This study aims to explore which patient-related factors at admission are associated with receiving CPS later in the terminal phase of life. METHODS: A prospective multicenter observational study was performed in six Dutch hospices and three nursing home-based palliative care units. The association between patient-related variables at admission (age, gender, diagnosis, use of opioids or psycholeptics, number of medications, Karnofsky Performance Status scale score, Edmonton Symptom Assessment System distress score, and Glasgow Coma Scale score) and the administration of CPS at the end of life was analyzed. RESULTS: A total of 467 patients died during the study period, of whom 130 received CPS. In univariate analysis, statistically significant differences were noted between the sedated and nonsedated patients with respect to younger age (P = 0.009), malignancy as a diagnosis (P = 0.05), higher Karnofsky Performance Status score (P = 0.03), the use of opioids (P < 0.001), the use of psycholeptics (P = 0.003), and higher Edmonton Symptom Assessment System distress score (P = 0.05). Multivariate logistic regression analysis showed that only the use of opioids at admission (odds ratio 1.90; 95% confidence interval 1.18-3.05) was significantly associated with the administration of CPS. CONCLUSION: Physicians should be aware that patients who use opioids at admission have an increased risk for the administration of CPS at the end of life. In this group of patients, a comprehensive personalized care plan starting at admission is mandatory to try to prevent the development of refractory symptoms. Further research is recommended, to identify other determinants of the administration of CPS and to investigate which early interventions will be effective to prevent the need for CPS in patients at high risk.