Abstract Objective To determine the mortality, survival, and causes of death in patients with systemic sclerosis (SSc) through a meta-analysis of the observational studies published up to 2013. ...Methods We performed a systematic review and meta-analysis of the observational studies in patients with SSc and mortality data from entire cohorts published in MEDLINE and SCOPUS up to July 2013. Results A total of 17 studies were included in the mortality meta-analysis from 1964 to 2005 (mid-cohort years), with data from 9239 patients. The overall SMR was 2.72 (95% CI: 1.93–3.83). A total of 43 studies have been included in the survival meta-analysis, reporting data from 13,529 patients. Cumulative survival from onset (first Raynaud׳s symptom) has been estimated at 87.6% at 5 years and 74.2% at 10 years, from onset (non-Raynaud׳s first symptom) 84.1% at 5 years and 75.5% at 10 years, and from diagnosis 74.9% at 5 years and 62.5% at 10 years. Pulmonary involvement represented the main cause of death. Conclusions SSc presents a larger mortality than general population (SMR = 2.72). Cumulative survival from diagnosis has been estimated at 74.9% at 5 years and 62.5% at 10 years. Pulmonary involvement represented the main cause of death.
Aims
To identify the risk factors for lymphoedema following axillary lymph node dissection (ALND) in a European sample and to propose a lymphoedema prediction model for this population.
Design
...Predictive retrospective cohort study comparing women who developed lymphoedema in 2 years of undergoing ALND with those who did not developed lymphoedema.
Methods
We reviewed the clinical records of 504 women who, between January 2008 and May 2018, underwent surgery for breast cancer that involved ALND. Logistic regression was used to identify significant risk factors for lymphoedema. The prediction accuracy of the model was assessed by calculating the area under the receiver operating characteristic curve.
Results
Of the 504 women whose records were analysed, 156 developed lymphoedema. Significant predictors identified in the regression model were level of lymph node dissection, lymph node status, post‐operative complications, body mass index (BMI) and number of lymph nodes extracted. The prediction model showed good sensitivity (80%) in the study population.
Conclusions
The factor contributing most to the risk of lymphoedema was the level of lymph node dissection, and the only patient‐related factor in the prediction model was BMI. The model offers good predictive capacity in this population and it is a simple tool that breast care units could use to assess the risk of lymphoedema following ALND. Nurses with specialist knowledge of lymphoedema have a key role to play in ensuring that women receive holistic and individualized care.
Impact
What problem did the study address? Secondary lymphoedema is one of the main complications in the treatment of breast cancer. What were the main findings? The prediction model included five factors associated with the risk of lymphoedema following ALND. The strongest predictor was the level of lymph node dissection, and the only patient‐related factor was BMI. Where and on whom will the research have an impact? The prediction model offers breast care units a tool for assessing the risk of lymphoedema in women undergoing surgery involving ALND. The results highlight the importance of weight reduction as a preventive measure and support a more conservative surgical approach.
Objective
The objective of the study is to test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for ...the wish to hasten death (WTHD) in advanced cancer patients.
Methods
This was a cross‐sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed.
Results
Structural equation modeling showed that perceived loss of control (−0.402) and functional impairment (−0.21) were risk factors for perceived loss of dignity. Loss of control (−0.385) and functional impairment (−0.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (0.246 and 0.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish.
Conclusions
The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD.
To perform temporal validation of a risk prediction model for breast cancer-related lymphoedema in the European population.
Temporal validation of a previously developed prediction model using a new ...retrospective cohort of women who had undergone axillary lymph node dissection between June 2018 and June 2020.
We reviewed clinical records to identify women who did and did not develop lymphoedema within 2 years of surgery and to gather data regarding the variables included in the prediction model. The model was calibrated by calculating Spearman's correlation between observed and expected cases. Its accuracy in discriminating between patients who did versus did not develop lymphoedema was assessed by calculating the area under the receiver operating characteristic curve (AUC).
The validation cohort comprised 154 women, 41 of whom developed lymphoedema within 2 years of surgery. The value of Spearman's coefficient indicated a strong correlation between observed and expected cases. Sensitivity of the model was higher than in the derivation cohort, as was the value of the AUC.
The model shows a good capacity to discriminate women at risk of lymphoedema and may therefore help in developing improved care pathways for individual patients.
Identifying risk factors for lymphoedema secondary to breast cancer treatment is vital given its impact on women's physical and emotional well-being.
What problem did the study address? Risk of BCRL. What were the main findings? The prediction model has a good capacity to discriminate women at risk of lymphoedema. Where and on whom will the research have an impact? In clinical practice with women at risk of BCRL.
STROBE checklist. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: It presents a validated risk prediction model for BCRL.
There was no patient or public contribution in the conduct of this study.
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling ...and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta‐ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients’ personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.
Genomic studies have revealed the complex clonal heterogeneity of chronic lymphocytic leukemia (CLL). The acquisition and selection of genomic aberrations may be critical to understanding the ...progression of this disease. In this study, we have extensively characterized the mutational status of TP53, SF3B1, BIRC3, NOTCH1, and ATM in 406 untreated CLL cases by ultra-deep next-generation sequencing, which detected subclonal mutations down to 0.3% allele frequency. Clonal dynamics were examined in longitudinal samples of 48 CLL patients. We identified a high proportion of subclonal mutations, isolated or associated with clonal aberrations. TP53 mutations were present in 10.6% of patients (6.4% clonal, 4.2% subclonal), ATM mutations in 11.1% (7.8% clonal, 1.3% subclonal, 2% germ line mutations considered pathogenic), SF3B1 mutations in 12.6% (7.4% clonal, 5.2% subclonal), NOTCH1 mutations in 21.8% (14.2% clonal, 7.6% subclonal), and BIRC3 mutations in 4.2% (2% clonal, 2.2% subclonal). ATM mutations, clonal SF3B1, and both clonal and subclonal NOTCH1 mutations predicted for shorter time to first treatment irrespective of the immunoglobulin heavy-chain variable-region gene (IGHV) mutational status. Clonal and subclonal TP53 and clonal NOTCH1 mutations predicted for shorter overall survival together with the IGHV mutational status. Clonal evolution in longitudinal samples mainly occurred in cases with mutations in the initial samples and was observed not only after chemotherapy but also in untreated patients. These findings suggest that the characterization of the subclonal architecture and its dynamics in the evolution of the disease may be relevant for the management of CLL patients.
•Clonal and subclonal mutations of NOTCH1 and TP53, clonal mutations of SF3B1, and ATM mutations in CLL have an impact on clinical outcome.•Clonal evolution in longitudinal samples occurs before and after treatment and may have an unfavorable impact on overall survival.
Mantle cell lymphoma (MCL) is an aggressive tumor, but a subset of patients may follow an indolent clinical course. To understand the mechanisms underlying this biological heterogeneity, we performed ...whole-genome and/or whole-exome sequencing on 29 MCL cases and their respective matched normal DNA, as well as 6 MCL cell lines. Recurrently mutated genes were investigated by targeted sequencing in an independent cohort of 172 MCL patients. We identified 25 significantly mutated genes, including known drivers such as ataxia-telangectasia mutated (ATM), cyclin D1 (CCND1), and the tumor suppressor TP53 ; mutated genes encoding the anti-apoptotic protein BIRC3 and Toll-like receptor 2 (TLR2); and the chromatin modifiers WHSC1 , MLL2 , and MEF2B . We also found NOTCH2 mutations as an alternative phenomenon to NOTCH1 mutations in aggressive tumors with a dismal prognosis. Analysis of two simultaneous or subsequent MCL samples by whole-genome/whole-exome (n = 8) or targeted (n = 19) sequencing revealed subclonal heterogeneity at diagnosis in samples from different topographic sites and modulation of the initial mutational profile at the progression of the disease. Some mutations were predominantly clonal or subclonal, indicating an early or late event in tumor evolution, respectively. Our study identifies molecular mechanisms contributing to MCL pathogenesis and offers potential targets for therapeutic intervention.
Background:
The comprehensive assessment of needs in palliative care identifies where patients most want attention to guide clinical decisions that tailor care provision from their first encounters.
...Aim:
To define how and what needs are identified by the comprehensive assessment of needs in the original peer-reviewed articles in the field of palliative care.
Design:
An integrative systematic review as outlined by Whittemore and Knafl. Quality appraisal performed using the Mixed Methods Appraisal Tool.
Data sources:
PubMed, CINAHL, PsycINFO, Web of Science databases searched through May 2019 and updated in July 2020.
Results:
Forty-nine articles met inclusion criteria for original articles in English or Spanish reporting comprehensive assessment of needs of adult patients receiving palliative care. The majority (41/49) of studies were moderate to high quality. Two themes were identified: (1) How a comprehensive assessment of needs should be carried out in palliative care, which reflected a preference to develop structured tools for assessment; (2) What needs of patients should be assessed in the comprehensive assessment of needs in palliative care, which conveyed a trend to assess beyond core domains – physical, psychological, social, spiritual – with information and practical most prevalent, but with substantial variation in specifying and classifying needs into domains.
Conclusions:
The assessment of needs in palliative care is comprehensive but lacks consensus on the needs and domains that should be assessed by the palliative care team. Future studies should better define what needs can be standardized into the assessment to improve process of care and patient satisfaction.
We investigated the clinico-biological features, outcomes, and prognosis of 949 patients with chronic lymphocytic leukemia according to age. No biological differences (cytogenetics by fluorescent in ...situ hybridization, IGHV, ZAP-70, CD38, NOTCH1, SF3B1) were found across age groups. Elderly patients (>70 years; n=367) presented more frequently with advanced disease (Binet C/Rai III-IV: 10/12% versus 5/5%; P<0.001), were treated less frequently (23.8% versus 41.9% at 3 years; P<0.001) and in most cases did not receive highly effective regimens and thus had a lower overall response rate (49% with 14% having complete responses versus 69% with 31% having complete responses; P<0.001). The elderly patients also had a shorter overall survival (6.6 versus 13.3 years; P<0.001) and higher disease-unrelated mortality (34.9% versus 6.9% at 10 years; P<0.001). However, disease-attributable mortality was not significantly different between younger and older patients. A combination of Binet stage, ZAP-70 level, β2-microglobulin concentration and comorbidity identified two risk groups (low-risk: 0-1 parameters; high-risk: 2-4 parameters) with different overall survivals (median: 6.8 versus 11.4 years, P<0.001). In patients requiring treatment, comorbidity at treatment (Cumulative Illness Rating Scale-T>4; hazard ratio 2.2, P<0.001) and response (treatment failure versus response: hazard ratio 1.60, P<0.04) were the most important prognostic factors for overall survival. In conclusion, in our series, elderly patients with chronic lymphocytic leukemia did not present with any biological features distinct from those of younger patients, but did have a poorer clinical outcome. This study highlights the importance of comprehensive medical care, achieving response to therapy, and specific management strategies for elderly patients with chronic lymphocytic leukemia.
Introduction
The Desire for Death Rating Scale (DDRS) and the short form of the Schedule of Attitudes toward Hastened Death (SAHD‐5) are different approaches to assessing the wish to hasten death ...(WTHD). Both have clinical threshold scores for identifying individuals with a meaningfully elevated WTHD. However, the agreement between the 2 measures and patient opinions about assessment of the WTHD are unknown.
Objectives
To compare the DDRS and SAHD‐5 and to analyze patient opinions about assessment of the WTHD.
Methods
The WTHD was assessed in 107 patients with advanced cancer using both the DDRS and SAHD‐5. Patients were subsequently asked their opinion about this assessment.
Results
Correlation between scores on the SAHD‐5 and the DDRS was moderate, Spearman rho = 0.67 (P < .01). The SAHD‐5 identified 13 patients (12.1%) at risk of the WTHD, and the DDRS identified 6 patients (5.6%) with a moderate‐high WTHD (P > .05). Concordance between the DDRS and SAHD‐5 in identifying individuals with an elevated WTHD was poor when using recommended cut‐off scores, κ = 0.37 (P < 0.01) but could be improved by using different thresholds. Only 4 patients (3.8%) regarded the assessment questions as bothersome, and 90.6% considered it important that health‐care professionals inquire about the WTHD.
Conclusions
The SAHD‐5 and DDRS appear to be appropriate methods for assessing the WTHD and could provide complementary information in clinical practice: the SAHD‐5 to screen for risk of the WTHD and the DDRS as a clinical interview to explore it in greater detail. Assessment of the WTHD is well accepted by palliative care cancer patients.
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