Lymphoedema specialists embedded into community nurse and wound services: impacts and outcomes.

BACKGROUND: Lymphoedema is a progressive condition causing significant alterations to life, exerting pressures on unscheduled care from complications including cellulitis and wounds. An on the ground education programme (OGEP) was implemented to raise knowledge, competence and confidence in lymphoedema management in community clinical services. The aim of this study was to explore the impact and outcomes of the OGEP intervention. METHODS: Data were captured before and after OGEP on 561 lymphoedema patients in the community setting. Data recorded included resource use, costs and outcomes (EQ-5D-5L and LYMPROM). RESULTS: Data demonstrated statistically significant reductions in resource allocations including staff visits (P<0.001), cellulitis admissions (P<0.001), compression consumables and wound dressing costs (P<0.001). Overall, the total mean per patient cost decreased from £1457.10 to £964.40 (including intervention) with outcomes significantly improved in EQ-5D-5L/LYMPROM scores. CONCLUSION: The analysis suggests the OGEP intervention may offer reductions in resource costs and improvements in patient outcomes. OGEP may therefore provide an innovative solution in future care delivery.

A spotlight on lymphoedema Did Not Attends: Demographics and workforce costs.

This unique evaluation aimed to estimate, the financial impact of non-attendance on a nation-wide hospital lymphoedema service. Along with gaining some understanding of patient characteristics of those who Did Not Attend (DNA) and were subsequently discharged. The evaluation design interrogated existing performance data from 2012 to 2022. This information was used to estimate the costs incurred based on national published sources and pay scales. Staffing costs of over £1.1 m in one decade related to the financial impact of over 23 000 unattended lymphoedema appointments. The characteristics of 870 patients from 2019/2020 were also evaluated suggesting that those with a wound alongside complex lymphoedema were less likely to DNA appointments. Two-thirds of patients were managing two or more comorbidities-obesity, cardiac conditions and diabetes being the most common. It seems likely that some DNAs are avoidable by adapting appointment administrative processes and greater understanding of patients' perception of value. However, the reasons for DNA are likely to be varied and nuanced so potentially a small proportion are unavoidable. Modernising appointment processes and identifying patient value may help minimise DNA costs in the future.

Evaluating the cost of managing patients with cellulitis in Wales, UK: A 20-year population-scale study.

This study aimed to estimate costs associated with managing patients with cellulitis from the UK National Health Service (NHS) perspective. The analysis was undertaken through the Secure Anonymised Information Linkage Databank, which brings together population-scale, individual-level anonymised linked data from a wide range of sources, including 80% of primary care general practices within Wales (population coverage ~3.2 million). The data covered a 20-year period from 1999 to 2019. All patients linked to the relevant codes were tracked through primary care settings, recording the number of general practice visits (number of days with an event recorded) and number of in-patient stays. Resources were valued in monetary terms (£ sterling), with costs determined from national published sources of unit costs. These resources were then extrapolated out to reflect UK NHS costs. This is the first attempt to estimate the financial burden of cellulitis using routine data sources on a national scale. The estimated direct annual costs to the Welsh NHS (£28 554 338) are considerable. In-Patient events and length of stay costs are the main cost drivers, with annual Welsh NHS estimates of £19 664 126 with primary care events costing £8 890 212. Initiatives to support patients and healthcare professionals in identifying early signs/risks of cellulitis, improve the accuracy of initial diagnosis, prevent cellulitis recurrence, and improve evidence-based treatment pathways would result in major financial savings, to both the Welsh and UK NHS. In light of these findings, Wales has developed the innovative National Lymphoedema cellulitis Improvement Programme to address these burdens; providing a proactive model of cellulitis care.

Children and young people with lymphoedema: a project to assess the education needs of healthcare professionals.

Healthcare professionals need adequate preparatory education to treat children and young people with lymphoedema confidently and competently. This collaborative international project, based on existing literature and expert focus groups, seeks to identify the nature of that education need and in what format it could be addressed.

Breast cancer-related upper limb lymphoedema: an overview.

Breast cancer-related lymphoedema can be commonly encountered within a community nurse's role. The severity of lymphoedema can range considerably, from those who are considered 'at risk' due to breast cancer treatment, to individuals with highly complex oedema from advanced disease. This article provides an overview of breast cancer-related lymphoedema, including the risk factors for developing lymphoedema and the impact lymphoedema has physically, psychologically and socially. The treatments for lymphoedema, including clinical practical advice and skills, are presented to support ongoing personal development. A collaborative approach between community nurses and lymphoedema clinics is recommended to ensure that patients receive the best care possible.

Introducing the new Chronic Oedema Wet Leg Pathway.

Reticence to apply compression therapy has been widely observed in clinical practice, compounded by an absence of evidenced-based pathways for application of prompt compression prior to measuring ankle brachial pressure index (ABPI). Importantly, delaying compression therapy for patients with chronic oedema and lymphorrhoea causes many avoidable complications. In 2017, Lymphoedema Network Wales (LNW) developed an evidenced-based pathway to improve the management of chronic oedema and wet legs (lymphorrhoea) for community nurses. During the past 4 years, the Chronic Oedema Wet Leg Pathway has been presented, published and used internationally, as well as being translated into different languages. It is commonly used in community nursing Teams as an evidenced-based document. However, like all documents and guidelines, when more evidence becomes available, the pathway needs updating. Therefore, this clinical focus article will present the new and enhanced Chronic Oedema Wet Leg Pathway, introducing a new level four compression section, which increases the layers of compression bandaging for patients with venous insufficiency or who are morbidly obese.

Development of the Lymphoedema Patient Reported Outcome Measure (LYMPROM).

To ensure lymphoedema patients in Wales receive the right care, at the right time, by the right person, patient-reported outcome measures (PROMs) were routinely completed within the All-Wales lymphoedema assessment documentation. This evaluation describes the development of the Lymphoedema Patient Reported Outcome Measure (LYMPROM), which is a tool developed by Lymphoedema Network Wales clinicians and key stakeholders. The tool was explored for face, form and content validity during 3 months in 2019; 128 anonymised completions of LYMPROM were reviewed to establish feasibility, acceptability and internal validity using Cronbach's alpha. LYMPROM was feasible and acceptability was high. Face and content validity were reported (i-CVI [item content validity index] range=0.43 - 1; s-CVI/Ave=0.94) and internal consistency was excellent (0.958). LYMPROM was easily integrated within lymphoedema services in Wales, promoting patient-led care and supporting value-based health care. Further evaluations of reliability and validity of LYMPROM are proceeding along with digital integration.

The education needs of health professionals conservatively managing genital oedema: UK survey findings.

BACKGROUND: Adults and children report genital oedema but prevalence is unknown. Pre-registration nurse training rarely includes genital oedema and postgraduate training opportunities are rare. AIM: To identify the education needs of health professionals regarding management of genital oedema. METHOD: An electronic survey was cascaded to health professionals through relevant professional groups and social media. FINDINGS: Of 149 UK respondents, most manage patients with genital oedema but only 2% felt current training was sufficient. Of 138 responding regarding supplemental training, only a half had completed genital oedema specific education, usually of 1-4 hours' duration. Confidence in knowledge was up to 22.5% higher in those with genital oedema education, even accounting for years of experience. The most common top three individual needs were compression, contemporary surgical and medical management and patient assessment. Educational resources are needed and both offline and online formats were suggested; collaborative events with urology/pelvic health are essential. CONCLUSION: Health professionals working in lymphoedema care have (unmet) specific education needs regarding genital oedema management. The desire for both offline and online resources reflects the necessity of accessing learning at a distance and on an 'as needed' basis.

Guidelines for managing people with lymphoedema remotely: a post-COVID-19 response document.

During the COVID-19 pandemic it was initially not possible to see people with lymphoedema face-to-face at lymphoedema services, due to the potential risks of the virus, because they were shielding, because of redeployment of rooms or staff, and due to sporadic restrictions of movement. The pandemic therefore accelerated adjustments in lymphoedema service delivery, while ensuring effective and efficient care was paramount. This document presents a pragmatic guide for lymphoedema services. Although clinical and non-clinical staff need to comply with guidance from their own organisations/commissioners, this document aims to provide specific guidance and share good practice in relation to lymphoedema management. These guidelines are based on analysis of the national response of Lymphoedema Network Wales during the first few months of the COVID-19 pandemic and incorporate supporting contemporary advice. They have been used throughout NHS Wales, providing a standardised approach in supporting care for people with lymphoedema. In light of the enduring nature of COVID-19, it is imperative that lymphoedema services have a means to provide suitable care for patients. Although face-to-face appointments are sometimes deemed necessary, many patients can be suitably supported via telehealth consultations. These guidelines may help lymphoedema services restore and reset in a safe and acceptable manner.

The benefits of raising awareness of lymphoedema among care home staff.

BACKGROUND: Patients with lymphoedema referred to a lymphoedema service from care homes in one health board area in Wales were often complex cases, with repeated cellulitis, a history of falls and other complications. A pilot project was initiated to develop education and raise awareness of lymphoedema among care home staff. AIMS: To enable care staff to identify residents with lymphoedema, promote prompt referrals, raise the importance of skin care and exercise in the management of lymphoedema and estimate the likely costs from complications associated with lymphoedema. METHODS: An education tool was developed and 47 care homes were asked to participate. A lymphoedema therapist carried out a scoping review of the residents. RESULTS: Forty-four care homes agreed to participate in the project with 1216 education packs being issued to care home staff. Initial findings suggest that of the 960 residents reviewed, 262 had lymphoedema (27%); 4% suffered with frequent falls, 1% had wounds and 3% had recurrent cellulitis. Only 13% (35/262) of residents with lymphoedema were known to the local lymphoedema service. Of the 31 residents reporting cellulitis, 81% had lymphoedema; of the 11 residents identified with a wound, 100% had lymphoedema and of the 40 residents reporting falls, 70% had lymphoedema. CONCLUSION: This educational project has identified the value of raising awareness of lymphoedema within care homes.

Willingness to bear adversity and beliefs about the curability of advanced cancer in older adults.

BACKGROUND: Older patients with advanced cancer who are 100% certain they will be cured pose unique challenges for clinical decision making, but to the authors' knowledge, the prevalence and correlates of absolute certainty about curability (ACC) are unknown. METHODS: Cross-sectional data were collected in a geriatric assessment trial. ACC was assessed by asking patients, "What do you believe are the chances that your cancer will go away and never come back with treatment?" Response options were 100% (coded as ACC), >50%, 50/50, <50%, 0%, and uncertain. The willingness to bear adversity in exchange for longevity was assessed by asking patients to consider trade-offs between survival and 2 clinical outcomes that varied in abstractness: 1) maintaining quality of life (QOL; an abstract outcome); and 2) specific treatment-related toxicities (eg, nausea/vomiting, worsening memory). Logistic regression was used to assess the independent associations between willingness to bear adversity and ACC. RESULTS: Of the 524 patients aged 70 to 96 years, approximately 5.3% reported that there was a 100% chance that their cancer would be cured (ACC). ACC was not found to be significantly associated with willingness to bear treatment-related toxicities, but was more common among patients who were willing to trade QOL for survival (adjusted odds ratio, 4.08; 95% CI, 1.17-14.26). CONCLUSIONS: Patients who were more willing to bear adversity in the form of an abstract state, namely decreased QOL, were more likely to demonstrate ACC. Although conversations regarding prognosis should be conducted with all patients, those who are willing to trade QOL for survival may especially benefit from conversations that focus on values and emotions.

Recovery-Oriented Outcomes Associated with Long-Acting Injectable Antipsychotics in an Urban Safety-Net Population.

This study examined whether transitioning patients from oral antipsychotics (POs) to long-acting injectable antipsychotics (LAIs) helps patients achieve recovery-oriented goals. Data was extracted from San Francisco County's electronic medical record system for this retrospective pre-post observational study. Patients reflect a safety-net population treated in community-based mental health settings during 2015. The San Francisco Adult Strengths and Needs Assessment (SF ANSA), a measure of psychosocial functioning, was used to assess within-subject change when treated with POs versus LAIs. In our study sample (N = 77), LAI SF ANSA scores showed significant improvements in criminal behaviors (p = .017), medication adherence (p = .008), and spirituality (p = .028), and a non-significant trend for residential stability (p = .073). This is the first study to evaluate improvements in key psychosocial areas after treatment with LAIs. This work suggests that LAIs can be another tool for providers to help patients work towards their recovery-oriented goals.

Are you handling genital oedema confidently?

Men, women or children can suffer from oedema (swelling) of the genitalia. When differential diagnosis has excluded acute trauma or pathology and swelling remains, the condition may be diagnosed as genital lymphoedema, a chronic condition that increases the relative risk of cellulitis. Diagnosis of genital oedema is often delayed due to problems with patient and health professional behaviour, in terms of embarrassment, lack of confidence or lack of knowledge. Awareness of this condition and knowledge on how to manage it will go a long way in helping both patients and clinicians overcome the challenges of addressing genital oedema. This article describes the authors' experiences in managing genital oedema. It also briefly discusses a new international project that seeks to identify the knowledge and training that health professionals need to manage this condition more confidently.

A Randomized Phase II Open-Label Multi-Institution Study of the Combination of Bevacizumab and Erlotinib Compared to Sorafenib in the First-Line Treatment of Patients with Advanced Hepatocellular Carcinoma.

OBJECTIVES: To investigate the clinical efficacy and tolerability of the combination of bevacizumab (B) and erlotinib (E) compared to sorafenib (S) as first-line treatment for patients with advanced hepatocellular carcinoma (HCC). METHODS: A total of 90 patients with advanced HCC, Child-Pugh class A-B7 cirrhosis, and no prior systemic therapy were randomly assigned (1: 1) to receive either 10 mg/kg B intravenously every 14 days and 150 mg E orally daily (n = 47) (B+E) or 400 mg S orally twice daily (n = 43). The primary endpoint was overall survival (OS). Secondary endpoints included event-free survival (EFS), objective response rate based on Response Evaluation Criteria in Solid Tumors (RECIST 1.1), time to progression, and safety and tolerability. RESULTS: The median OS was 8.55 months (95% CI: 7.00-13.9) for patients treated with B+E and 8.55 months (95% CI: 5.69-12.2) for patients receiving S. The hazard ratio (HR) for OS was 0.92 (95% CI: 0.57-1.47). The median EFS was 4.37 months (95% CI: 2.99-7.36) for patients receiving B+E and 2.76 months (95% CI: 1.84-4.80) for patients receiving S. The HR for EFS was 0.67 (95% CI: 0.42-1.07; p = 0.09), favoring B+E over S. When OS was assessed among patients who were Child-Pugh class A, the median OS was 11.4 months (95% CI: 7.5-15.7) for patients treated with B+E (n = 39) and 10.26 months (95% CI: 5.9-13.0) for patients treated with S (n = 38) (HR = 0.88; 95% CI: 0.53-1.46). CONCLUSIONS: There was no difference in efficacy between the B+E and S arms, although the safety and tolerability profile tended to favor B+E over S based on competing risk analysis.

Poor Sleep Quality, Psychological Distress, and the Buffering Effect of Mindfulness Training During Pregnancy.

OBJECTIVE/BACKGROUND: Poor sleep quality is common in pregnancy and associated with increased psychological distress, which has adverse consequences for families. Emerging theory suggests that mindfulness-based interventions may help reduce cognitive and emotional reactivity to stressful events. The current study examines the effects of a mindfulness-based intervention on the relationship between poor sleep quality and increased depression symptom severity and perceived stress during pregnancy. Additionally, we explored the prevalence of poor sleep quality in this unique sample and the impact of intervention on sleep quality. PARTICIPANTS: Participants were 215 ethnically diverse, overweight and obese, predominantly low-income pregnant women drawn from a study examining the impact of an 8-week mindfulness-based program (Mindful Moms Training; MMT) to reduce excessive gestational weight gain, stress, and depression compared to treatment as usual (TAU). METHODS: Participants reported global sleep quality, depressive symptoms, and perceived stress at baseline and postintervention. RESULTS: Most participants (63%) were categorized as poor sleepers at baseline. MMT participants did not experience significantly greater improvement in sleep quality compared to TAU participants. Baseline poor global sleep quality predicted increased depression symptom severity for all participants. Baseline poor global sleep quality predicted increased perceived stress for the TAU group only; this association was not evident in the MMT group. CONCLUSIONS: Poor sleep quality is prevalent in overweight and obese predominantly low-income pregnant women. Poor sleep quality was associated with worsening psychological distress, but mindfulness training significantly attenuated the influence of poor sleep on perceived stress.

The development of a 'wet leg' pathway for chronic oedema.

Chronic oedema and leaking lymphorrhoea can be distressing and challenging for patients to live with. This article introduces the Chronic Oedema 'Wet Leg' Pathway, which became an output from the Lymphoedema Network Wales 'On the Ground Education Project' ( Thomas et al, 2017 ). The evidence-based pathway provides nurses and therapists with clear guidelines to support prompt, efficient and effective management of all patients with chronic oedema and wet legs. This article presents the evidence and demonstrates the benefits of timely active treatment for all patients with leaking lymphorrhoea, which includes decreasing pain and improving mobility and daily activities. Other benefits include reducing the risk of cellulitis and the development of chronic wounds. The pathway also demonstrates opportunities for the NHS by decreasing both the number of community nursing visits and the number of wound dressings used. By actively treating symptoms-rather than simply mopping up the leaking lymphorrhoea-this pathway demonstrates value-based health care by reducing waste, harm and variation within the NHS.

Taking a proactive approach to mild to moderate chronic oedema: a case study.

This case study demonstrates the benefits of early intervention and a proactive approach for a patient with chronic oedema living in the community. These benefited the patient and also supported value-based healthcare in the NHS. The patient's health and wellbeing significantly improved with an assessment of his chronic oedema and a management plan consisting of skincare, an exercise and movement programme and the introduction of a class 1 British standard compression garment.

Effects of pre- and postnatal maternal stress on infant temperament and autonomic nervous system reactivity and regulation in a diverse, low-income population.

We examined the prospective associations of objective and subjective measures of stress during pregnancy with infant stress reactivity and regulation, an early-life predictor of psychopathology. In a racially and ethnically diverse low-income sample of 151 mother-infant dyads, maternal reports of stressful life events (SLE) and perceived stress (PS) were collected serially over gestation and the early postpartum period. Infant reactivity and regulation at 6 months of age was assessed via maternal report of temperament (negativity, surgency, and regulation) and infant parasympathetic nervous system physiology (respiratory sinus arrhythmia [RSA]) during the Still Face Paradigm. Regression models predicting infant temperament showed higher maternal prenatal PS predicted lower surgency and self-regulation but not negativity. Regression models predicting infant physiology showed higher numbers of SLE during gestation predicted greater RSA reactivity and weaker recovery. Tests of interactions revealed SLE predicted RSA reactivity only at moderate to high levels of PS. Thus, findings suggest objective and subjective measures of maternal prenatal stress uniquely predict infant behavior and physiology, adjusting for key pre- and postnatal covariates, and advance the limited evidence for such prenatal programming within high-risk populations. Assessing multiple levels of maternal stress and offspring stress reactivity and regulation provides a richer picture of intergenerational transmission of adversity.

Meeting Women Where They Are: Integration of Care As the Foundation of Treatment for At-Risk Pregnant and Postpartum Women.

Purpose In these times of rapidly changing health care policies, those involved in the health care of women, especially during the reproductive years, have a unique and daunting opportunity. There is great potential to positively impact women's health through focus on prevention, attention to addressing disparities, and new focus on the integration of behavioral health care in primary care settings. Description In this report from the field, we suggest that the integration of mental health care into other health services and addressing underlying social needs by partnering with community-based organizations should be a top priority for all settings seeking to provide excellent health care for women. Assessment We describe our experience in a diverse, urban, safety net system to draw attention to four areas of innovation that others might adapt in their own systems: (1) addressing social support and other social determinants of health; (2) tailoring services to the specific needs of a population; (3) developing integrated and intensive cross-disciplinary services for high-risk pregnant women; and (4) bridging the divide between prenatal and postpartum care. Conclusion Women are more likely to be engaged with healthcare during their pregnancy. This engagement, however limited, may be a unique "window of opportunity" to help them address mental health concerns and implement positive behavior change. Future work should include research and program evaluation of innovative programs designed to serve the entire family and meeting at-risk women where they are.

Pilot evaluation of the management of chronic oedema in community settings project.

AIMS: The aim of this economic analysis was to estimate the economic impact of the On the Ground Education Programme (OGEP) within one local University Health Board (UHB) in Wales. BACKGROUND: The burden of managing chronic oedema can be considerable to the NHS. Developing innovative solutions to the care and management of patients with chronic oedema has the potential to deliver prudent, cost-effective and high quality care within NHS Wales. DESIGN: The study was a pilot Evaluation of the OGEP using retrospectively and prospectively collected patient recalled data. METHODS: A questionnaire collected health care service use data prior to receiving the OGEP (baseline) and at 3 months follow-up from 97 patients during the period June 2016 and January 2017. In addition, we analysed a patient reported health outcome using the EQ-5D 5L, which was completed by patients at the same two assessment points. RESULTS/FINDINGS: The total cost of managing chronic oedema in the 97 patients recruited was £563 729 (mean patient cost £5812 SD (£5870) at baseline and £445 098 (including the addition of intervention costs) (mean patient cost £4589 (SD £5465) at 3 months follow-up. Improvements in the EQ-5D 5L score increasing from 0.40 (SD 0.25) at baseline to 0.54 (SD 0.23) at 3 months follow-up. CONCLUSIONS: Our research show health care resource use and costs decreased, while health-related quality of life scores increased.