A quality of life measure for limb lymphoedema (LYMQOL)

Background: This paper describes the validation of a 'condition-specific' quality of life (QoL) assessment tool for lymphoedema of the limbs (LYMQOL). Aims: To ascertain whether the tool could accurately assess QoL in this patient group. Methods: Face and content validity were assessed by patient questionnaires; criterion validity by comparison with European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - Core 30 questions (EORTC QLQ-C30); internal validity by Cronbach's Alpha and split half-testing of each domain; reliability by the test-retest method; construct validity by comparing LYMQOL score with initial limb volume and responsiveness by measuring changes in score following treatment. Results: The tool was validated in a total of 209 patients. Face, content, criterion and interval validity were supported. However, there was no correlation between initial limb volume and LYMQOL score (construct validity), a finding which is similar to that from other studies. The validation of responsiveness was limited by the small numbers of responses at three and six months after the initial assessment. Conclusions: LYMQOL is a validated condition-specific QoL assessment tool which can be used for lymphoedema of the limbs both in clinical assessment and as an outcome measure

Patients' reports or clinicians' assessments: Which are better for prognosticating?

BACKGROUND: The Prognosis in Palliative care Scale (PiPS) predicts survival in advanced cancer patients more accurately than a doctor's or a nurse's estimate. PiPS scores are derived using observer ratings of symptom severity and performance status. The purpose of this study was to determine whether patient-rated data would provide better prognostic estimates than clinician observer ratings. PATIENTS AND METHODS: 1018 subjects with advanced cancer no longer undergoing tumour-directed therapy were recruited to a multi-centre study. Prognostic models were developed using observer ratings, patient ratings or a composite method that used patient ratings when available or else used observer ratings. The performance of the prognostic models was compared by determining the agreement between the models' predictions and the survival of study participants. RESULTS: All three approaches to model development resulted in prognostic scores that were able to differentiate between patients with a survival of 'days', 'weeks' or 'months+'. However, the observer-rated models were significantly (p<0.05) more accurate than the patient-rated models. CONCLUSIONS: A prognostic model derived using observer-rated data was more accurate at predicting survival than a similar model derived using patient self-report measures. This is clinically important because patient-rated data can be burdensome and difficult to obtain in patients with terminal illnesses

The accuracy of clinician predictions of survival in the Prognosis in Palliative care Study II (PiPS2): A prospective observational study

BACKGROUND: Prognostic information is important for patients with cancer, their families, and clinicians. In practice, survival predictions are made by clinicians based on their experience, judgement, and intuition. Previous studies have reported that clinicians' survival predictions are often inaccurate. This study reports a secondary analysis of data from the Prognosis in Palliative care Study II (PiPS2) to assess the accuracy of survival estimates made by doctors and nurses. METHODS AND FINDINGS: Adult patients (n = 1833) with incurable, locally advanced or metastatic cancer, recently referred to palliative care services (community teams, hospital teams, and inpatient palliative care units) were recruited. Doctors (n = 431) and nurses (n = 777) provided independent prognostic predictions and an agreed multi-professional prediction for each patient. Clinicians provided prognostic estimates in several formats including predictions about length of survival and probability of surviving to certain time points. There was a minimum follow up of three months or until death (whichever was sooner; maximum follow-up 783 days). Agreed multi-professional predictions about whether patients would survive for days, weeks or months+ were accurate on 61.9% of occasions. The positive predictive value of clinicians' predictions about imminent death (within one week) was 77% for doctors and 79% for nurses. The sensitivity of these predictions was low (37% and 35% respectively). Specific predictions about how many weeks patients would survive were not very accurate but showed good discrimination (patients estimated to survive for shorted periods had worse outcomes). The accuracy of clinicians' probabilistic predictions (assessed using Brier's scores) was consistently better than chance, improved with proximity to death and showed good discrimination between groups of patients with different survival outcomes. CONCLUSIONS: Using a variety of different approaches, this study found that clinicians predictions of survival show good discrimination and accuracy, regardless of whether the predictions are about how long or how likely patients are to survive. Accuracy improves with proximity to death. Although the positive predictive value of estimates of imminent death are relatively high, the sensitivity of such predictions is relatively low. Despite limitations, the clinical prediction of survival should remain the benchmark against which any innovations in prognostication are judged. STUDY REGISTRATION: ISRCTN13688211. http://www.isrctn.com/ISRCTN13688211

The ICC Compression Questionnaire: A Comprehensive Tool to Evaluate Compression Materials or Devices Applied in Subjects with Lymphedema or Chronic Venous Disease

Background: Compression therapy is an important part of the treatment of patients with lymphedema or chronic venous disease. However, there is no validated questionnaire evaluating the effect of compression and its acceptance by the patient. Therefore, the aims of this study were to construct a questionnaire evaluating the effect of compression and its acceptance by the patient, that is, the Dutch ICC Compression Questionnaire (ICC-CQ), to investigate its reliability and validity, and to translate it into English. Methods and Results: Eleven experts in applying compression and 51 Dutch patients with experience of using compression were involved in the construction process. One part of the ICC-CQ has to be completed by the patient and evaluates seven domains. The other part has to be completed by the health care provider and comprises three domains. Reliability and validity of the final version was investigated in a new group of 79 Dutch-speaking patients with lymphedema or chronic venous disease, wearing compression garments (N = 52) or bandages (N = 27). Except for one domain, the Intraclass Correlation Coefficients for test-rest/interrater reliability ranged from 0.55 to 0.93. Cronbach's alpha for internal consistency ranged from 0.71 to 0.97. Eighty-nine percent of the patients fully understood the questionnaire indicating good face validity, and 87% found it complete indicating good content validity. Construct validity was considered good since 10 out of 11 hypotheses were accepted. Conclusion: The ICC-CQ is the first reliable and valid questionnaire evaluating different kinds of compression and the experience by patients with lymphedema or chronic venous disease

Prevalence and Impact of Chronic Edema in Bariatric Patients: A LIMPRINT Study

Background: Chronic edema (CO) is a complex condition, arising from different factors, including immobility and obesity. Edema and obesity can have a significant impact on quality of life of patients and their families. Understanding how to manage edema in obese patients is an increasing challenge for both patients and clinicians. As effective treatment options are limited for this population, it is more cost-effective for patients to lose weight before starting treatment. When patients cannot maintain weight loss, one option is to have bariatric surgery.This study was part of LIMPRINT: Lymphedema IMpact and PRevalence INTernational, a study with the aim of identifying the prevalence and impact of CO in different countries and health care settings.Study Purpose: To evaluate the prevalence and impact of CO among patients in a United Kingdom bariatric surgical service.Methods and Results: The gold standard pitting test assessed the presence of edema. General (EuroQOL-5 Dimensions [EQ-5D], RAND 36-Item Short Form Health Survey, Version 1.0 [SF-36], Generalized Anxiety Disorder 7-Item Scale [GAD-7] and Patient Health Questionnaire–9 [PHQ-9]), and edema-specific (Lymphedema Quality of Life [LYMQOL]) quality-of-life questionnaires were used to evaluate impact of edema.The prevalence of edema was 52.1% (25 of 48 participants had edema), potentially linked to obesity, immobility, and medications. Most participants had International Society of Lymphology (ISL) Stage I edema. There were no statistically significant differences between the quality of life of participants with and without edema. However, comparing SF-36 results and normative population data indicated that quality of life was much lower than those in the normative population.Conclusions: This study highlights the high prevalence of edema and low quality of life of this bariatric population. ClinicalTrials.gov ID: NCT03154593

Paediatric lymphoedema : An audit of patients seen by the paediatric and primary lymphoedema group of vascular European Reference Network (VASCERN)

Little is known about the overall prevalence of lymphoedema in children and the types of paediatric lymphoedema seen by specialist centres. Therefore, this study was aimed to provide a profile of children with primary or secondary lymphoedema seen by the expert centres of the paediatric and primary lymphoedema working group (PPL-WG) of VASCERN and to compare the profile between the different countries.A retrospective review of all children (aged up to 18 years) seen for the first time by the expert centres over one year (2019) was carried out. Lymphoedema-, patient- and genetics-related data was collected and described for the whole group and compared between the different European countries/UK.In 2019, a total of 181 new children were seen by eight expert centres. For primary lymphoedema, the phenotype was based on the St George's classification of lymphatic anomalies. The percentages diagnosed according to each category were: 7.2% for syndromic lymphoedema, 2.8% for systemic/visceral involvement, 30.4% for congenital, 35.9% for late-onset lymphoedema and 19.3% for vascular/lymphatic malformations. 4.4% had secondary lymphoedema. Nearly 10% of all children had had at least one episode of cellulitis. The median delay from onset of symptoms to being seen by an expert centre was 2.4 years. In 44.4% of the children with primary lymphoedema a genetic test was performed, of which 35.8% resulted in a molecular diagnosis. Across the different centres, there was a wide variety in distribution of the different categories of paediatric lymphoedema diagnosed and the frequency of genetic testing.In conclusion, this paper has demonstrated that there is a large delay between the onset of paediatric lymphoedema and the first visit in the expert centres and that an episode of cellulitis is a relatively common complication. Diagnostic variation across the centres may reflect different referral criteria. Access to genetic testing was limited in some centres. It is recommended that these issues are addressed in the future work of the PPL-WG to improve the referral to the expert centres and the consistency in service provision for paediatric lymphoedema in Europe.Peer reviewe

On the importance of blind testing in archaeological science: the example from lithic functional studies

YesBlind-testing is an important tool that should be used by all analytical fields as an approach for validating method. Several fields do this well outside of archaeological science. It is unfortunate that many applied methods do not have a strong underpinning built on, what should be considered necessary, blind-testing. Historically lithic microwear analysis has been subjected to such testing, the results of which stirred considerable debate. However, putting this aside, it is argued here that the tests have not been adequately exploited. Too much attention has been focused on basic results and the implications of those rather than using the tests as a powerful tool to improve the method. Here the tests are revisited and reviewed in a new light. This approach is used to highlight specific areas of methodological weakness that can be targeted by developmental research. It illustrates the value in having a large dataset of consistently designed blind-tests in method evaluation and suggests that fields such as lithic microwear analysis would greatly benefit from such testing. Opportunity is also taken to discuss recent developments in quantitative methods within lithic functional studies and how such techniques might integrate with current practices

LIMPRINT: the UK experience - subjective control of swelling in patients attending specialist lymphedema services

Background and study design: This study was undertaken as part of the UK LIMPRINT international study to determine the number of people with chronic oedema and its impact on health services. Overall 7436 with chronic oedema (CO) were recruited in the main UK study from a range of health settings. Methods and results: Subjective control of arm and leg chronic oedema (CO) was defined for patients attending three Lymphoedema services in the UK. Of the total available in the UK dataset 5165 (69.4%)/ 7436(100%) of participants were included. Reasons for exclusions included the following: lack of information (1669), having both arm and leg swelling (272), lack of description of control (5) and professional inability to decide whether CO was controlled (325). Arm swelling occurred in 953 (18.5%), with leg CO in 4212 (81.5%). Poor control was found in 1430 (27.7%) and good control in 3735 (72.3%). Control of arm swelling was worse in men and control increased overall in those aged over 45 years. In contrast control of CO worsened in those with leg CO with increasing age and multiple co-morbidities. Obesity and cellulitis, particularly an episode in the last year were associated with poor control. Independent risk factors for arm CO were obesity, neurological disease and cellulitis in the last year and for leg CO: obesity, poor mobility, heart disease, presence of a wound, cellulitis in the last year and duration of swelling. Conclusion: Control of CO within specialised centres is complex due to sociodemographic and clinical comorbidities