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

Lymphoedema is a chronic and potentially progressive condition causing an excess accumulation of protein-rich fluid within the subcutaneous tissues that the lymphatic system has failed to remove (Mortimer, 2018). Lymphoedema can be categorised into primary or secondary. Primary lymphoedema is due to an abnormal genetic or lymphatic development, whereas secondary lymphoedema may be due to damage to the lymphatic system from cancer, skin disorders, venous disease, obesity or trauma (Moffatt et al, 2017; Holloway, 2018; Lindsay, 2019). The impact of lymphoedema predictably also affects quality of life (QoL) extending into all aspects of daily life including but not limited to mobility, relationships, shopping, social activities and the ability to work (Moffatt et al, 2017; Mortimer, 2018; Thomas et al, 2020; Gabe-Walters and Thomas, 2021). Those affected may experience pain, recurrent cellulitis (skin infection), immobility and heaviness in the affected area (Moffatt et al, 2017; Mortimer, 2018). Lymphoedema affects up to 29 per 1000 people in those aged 85 or over, lowering to a crude prevalence of 4 per 1000 (Moffatt et al, 2017), presenting a major clinical problem worldwide affecting at least 200 million people globally (Torgbenu at al, 2023). A collaborative approach from academic researchers and clinicians is underway, seeking to increase visibility, clinical prioritisation and funding for this burdensome health condition (Moffatt et al, 2019). Untreated lymphoedema can lead to chronic and difficult to treat wounds that are incredibly costly for healthcare systems, as well as recurring cellulitis possibly necessitating long-term antibiotic therapy or hospital admissions (Burian et al, 2021) creating a potentially preventable economic burden (Phillips et al, 2016; Guest et al, 2020).

Lymphoedema is often encountered in the community nursing setting due to the population profile of housebound patients in terms of increasing age, frailty, inactivity, obesity and multiple comorbidities. Researchers have suggested up to 69% of community nurses' caseloads are patients who have lymphoedema (Humphreys et al, 2017; Moffatt, 2017). A general deficiency of national guidance for community and wound care nurses on the management of lymphoedema, a lack of confidence and competence can result in diagnostic delays and, in some cases, inappropriate treatment (Humphreys et al, 2017; Thomas and Morgan, 2017).

In 2017, Lymphoedema Wales piloted an on the ground education programme (OGEP) involving a dedicated lymphoedema educator supporting community nurses in their day-to-day clinical work to increase knowledge and patient care. The OGEP intervention consists of a lymphoedema clinical educator/specialist working daily with a community nurse for a minimum of 3 days, identifying those patients with lymphoedema and implementing best practice and evidence-based management. When a patient with lymphoedema was identified the lymphoedema clinical educator would double up with the community or wound care nurses until they were confident in the treatment plan – which includes skin care, wound management, compression therapy, patient-specific exercises and advice. Dedicated one-to-one and group-facilitated formal lymphoedema education were also incorporated and seen as a vital component of OGEP; thereby supporting community nurses to reflect on the current practice challenges. Competencies in multi-layer lymphoedema compression bandaging were also achieved, along with knowledge on appropriate compression garment/wrap selection.

The OGEP pilot conducted in one health board in Wales used a ‘before and after’ design to capture observational data on 100 patients including resource use, costs and outcomes. The results were beneficial, supporting reduced community nurse time, resources and an improvement in patients' quality of life resulting in an overall reduction in NHS costs (Humphreys et al, 2017; Thomas et al, 2017). Subsequently, in 2020, through a successful value-based healthcare business case, all health boards in Wales agreed to embed the OGEP intervention across community nursing services in NHS Wales. Supporting further evaluation of OGEP, five different localities agreed to repeat the original observational data collection to investigate the impact of delivery on a much larger cohort.

Aim and objectives

Using routinely collected assessment and follow-up data, the aim of this evaluation was to explore the clinical benefit, impact, outcomes and cost-efficiencies of embedding the OGEP model in five different localities in Wales. The specific objectives were to:

• Assess healthcare resource use and related costs before and after OGEP
• Estimate changes in the profile of health-related quality of life measures (HRQoL) delivered to patients as a result of the OGEP model
• Measure changes in patient-reported outcome measures.

Methods

The evaluation was an observational ‘before and after’ design. This captured routinely collected assessment baseline data outcomes (clinical and patient) and resources for 2 months prior to OGEP, repeated again at 2 months post OGEP intervention. Data for all patients who had lymphoedema were included during the evaluation period selected during April 2021 to March 2022.

Data collection measures

Data capture included soft and hard clinical and patient outcomes including body mass index (BMI), Lymphoedema Wales Outcome Severity (Thomas and Morgan, 2017), Rockwood Frailty Scores (Prendiville et al, 2022), lymphoedema site and history. A resource utilisation questionnaire (RUQ) was administered to obtain healthcare resource use over a 2-month period before and 2 months after the intervention. The RUQ included details on community nurse visits, GP contacts, products used such as wound dressings/bandages, cellulitis admissions/episodes and falls. Resource use was collated from patient assessments, clinical notes and digital records. All data were then transferred anonymously onto an MS Excel spreadsheet. All patients consented for their anonymous data to be used for the OGEP evaluation.

Health-related quality of life/patient-reported outcome measures

The EQ-5D-5L is a generic HRQoL questionnaire that captures assessment of health state in five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/depression at five levels ranging from ‘no problems’ to ‘severe problems’. These patient responses generate a 5-figure profile that is converted to an individual utility score that represents that person's current HRQoL. Together with this 5D score patients rated their health on a visual analogue scale (VAS) that required a self-rated valuation on a scale of 0 to 100 (EuroQol Group, 2024). The EQ-5D-5L including EQ VAS was completed before and after OGEP intervention.

LYMPROM is a 13-item patient reported outcome measure (PROM) for adults with lymphoedema and also has a free text box for additional information. LYMPROM is made up of three dimensions: physical health; social health and emotional health. Items captured included impact of lymphoedema on heaviness, pain, anxiety, work, intimacy/desirability, hobbies, buying clothes/shoes and holidays on a scale of 0 (no impact) to 10 (highest impact) (Gabe-Walters and Thomas, 2021). LYMPROM was also completed before and after OGEP.

Data analysis

By assigning each patient a number in sequential order to preserve anonymity, data were entered into Excel. Continuous variables were reported as a mean with standard deviation (SD) and categorical data as frequency. Differences in pre and post-intervention were analysed using a paired samples t test with 95% confidence interval to examine the effect. Results were analysed using IBM SPSS Statistics for Windows, version 26. A P value less than 0.05 was considered statistically significant.

Resource use associated with lymphoedema was summarised into relevant categories (eg, primary care, secondary care, medication/dressing, wound costs) and valued in £ sterling using a price year of 2021/2022. The costs were determined from national published sources: British National Formulary online portal (https://bnf.nice.org.uk) at prices given in August 2023, NHS reference costs (cost schedule) for 2020/2021 (NHS England, 2022), unit cost reports from the Personal and Social Services Research Unit (PSSRU) at the University of Kent, and NHS Contract information (Thomas et al, 2021). If relevant costs were not available for these years, an earlier source was used and an inflation calculator (Bank of England) was used to convert costs to the price year(s) for analysis (Table 1).

The intervention costs were calculated using 1 hour of a band 7 lymphoedema therapist and 1 hour of a band 4 lymphoedema practitioner, with an overall cost of the OGEP intervention estimated at £56 100. A descriptive account of the resources and associated costs was captured in a disaggregated format (eg, each category of health resource use) and then aggregated to give an overall cost of providing the intervention deriving a cost per patient. The EQ-5D-5L and PROM results were analysed separately to allow a comprehensive picture of the impact.

Ethics and research governance

A university health board research and development office deemed the study a service evaluation/data audit requiring no formal NHS ethics committee approval. Swansea University School of Health and Social Care ethics committee provided ethical approval to analyse the anonymised data set.

Results

Five hundred and eighty five patients were recruited into the OGEP programme over the evaluation time frame across the five health boards. Twenty-four patients died before the second review at 2 months thus 561 patients completed before and after OGEP data collection. The average age of patients was 70 with a range of 42-101 years. As shown in Table 2, 59% of participants were female and 41% were male. Lymphoedema was diagnosed by the OGEP registered lymphoedema specialist during a clinical subjective and objective assessment including volume circumference measurements and tests such as Stemmer's sign and pitting. Lymphoedema was mainly identified in the lower limbs (99%) and 89% of those had bilateral swelling. The majority of patients (83%) were classed as vulnerable or worse on the Rockwood Frailty Score and 58% had a BMI over 30. Eighty per cent of patients were recorded as ‘severe’, ‘complex’ or ‘complex with wound’ in the severity of lymphoedema classification. Patients were seen in wound clinics (32%), leg clubs (2%) and the majority in the community (66%).

Resource use

The health staffing resource utilisation (in numbers) for each category is shown in Table 3. At baseline, there was considerable healthcare input over the 2 months prior to the OGEP; with community nurse visits showing the highest frequency of resource inputs – mean number of visits per patient 8.53 (SD 11.1). At 2 months following the introduction of OGEP these were still the most common resource inputs, but the mean number of visits per patient was 5.56 (SD 8.41). This was a statistically significant mean difference of 2.97 (95% confidence intervals (CIs) 2.11, 3.83; P<0.001). Healthcare support worker visits showed the second highest mean number of visits per patient 3.04 (SD 6.15). At 2 months post OGEP, this reduced to 2.65 (SD 5.05) but was not statistically significant (P=0.094). Wound care nurse appointments were the third most frequent staff input – mean visits 2.67 (SD 6.46), reducing to 2.23 (SD 4.82) at 2 months post OGEP (P=0.041). GP resource utilisation was also statistically significant, with the mean difference for in-person appointments being 0.03 (Cls 0.01, 0.05; P=0.011), mean difference for GP home visits 0.04 (Cls 0.02, 0.07; P=0.003), and mean difference in GP virtual appointments or telephone calls was 0.26 (Cls 0.18, 0.34; P<0.001).

Cellulitis occurrence also reduced with the OGEP intervention (Table 4). The number of cellulitis episodes reduced from 164 to 45, which was statistically significant (P<0.001). Episodes of cellulitis treated at home reduced from 112 to 37 and those where the patient was admitted to hospital from 31 to 5, both statistically significant differences (P<0.001). The changes in length of inpatient stays for cellulitis and number of emergency department visits were not significant (P=0.246 and P=0.397 respectively).

The number of falls also reduced after the OGEP intervention (Table 4). There were 58 falls pre OGEP compared with 4 recorded post (P<0.001). The number of admissions due to a fall also reduced from 11 to 1, again statistically significant (P<0.004).

Cost impact

With the reductions in resource use, a reduction was also seen in the costs for the 2 months post OGEP compared with before the intervention (Table 5). The biggest difference identified was from community nurse visits with mean patient cost £695.30 (SD £907.70) vs £453.3 (SD £685.90) post OGEP. That is a mean difference of -£242.0 (95% CIs -£312.40, -£171.60), which was statistically significant (P<0.001). Practice nurse, wound care nurse and healthcare assistant visit costs also reduced, with a mean difference for practice nurse costs of -£6.80 (CIs -£0.40, -£13.30), which was statistically significant (P=0.038). Wound care nurse appointments reduced from a mean patient cost of £173.80 (SD £420.00) to £145.10 (SD £313.30) post OGEP. That is a mean difference of -£28.70 (CIs -£56.3, -£1.20), which was statistically significant (P=0.041). Although healthcare assistant visit costs reduced the difference was not statistically significant (P=0.094).

All of the GP contacts showed reduced costs following OGEP and these reductions were statistically significant. GP home visits (P=0.003), telephone calls (P<0.001) and appointments in the surgery (P=0.011) reduced with a mean patient difference of £6, £4 and £1.10 respectively. Other significant differences at baseline and follow-up were seen in the cost of the admissions to hospital with cellulitis. A mean per-patient cost of £169.60 (SD £853.50) compared with £27.40 (SD £288.80) showed a mean difference of -£142.30 (CIs -£214.30, -£70.30), which was statistically significant (P<0.001). The change in costs associated with falls was not statistically significant (P=0.071).

All compression and wound product use was costed per patient use pre and post OGEP. For 2 months prior to OGEP the costs were £81 284 for compression products, reducing to £43 156 post, and £42 359 for wound dressings down to £17 478 after. This results in a mean patient reduction of £68 for compression and £44.40 for wound products respectively (P<0.001).

Overall, including all resources, the total mean per-patient costs were £1457.10 at baseline and £964.40 (including the addition of intervention costs) at follow up. This indicates a cost difference of £492.70 across 561 patients (CIs -£621.50, -£363.90), which was statistically significant (P<0.001).

Patient outcomes EQ-5D-5L

The mean EQ-5D-5L utility score increased from 0.467 (SD 0.304) to 0.505 (SD 0.350) after OGEP intervention. This was a mean difference of 0.039 (CIs 0.013, 0.064) which was statistically significant (P=0.003). The results of the visual analogue scale (EQ VAS) also showed an increase from 60.8 (SD 20.7) to 65.1 (SD 20.5) post OGEP. The mean difference of 4.3 (CIs 6.2, 2.4) was also shown to be statistically significant (P<0.001).

Patient outcomes LYMPROM

The mean overall LYMPROM score decreased (indicating an improvement) from 35.6 (SD 22.8) to 22.8 (SD 21.2) after OGEP intervention. This was a mean difference of 12.71 (CIs 10.8, 14.7), which was statistically significant (P<0.001).

Sensitivity analysis

A one-way sensitivity analysis was undertaken to assess the extent of potential changes in the main cost parameters and outcomes of OGEP using the mean difference, lower and upper bounds of the confidence intervals for the LYMPROM and the EQ-5D-5L (Table 6).

When the base case results of the costs of the intervention are used with the base case results of the LYMPROM scores, the cost per unit of improvement was -£39 indicating that the intervention costs less and is more effective. When the lower 5% bound of net cost (-£363.90) is used with the upper 95% bound of net utility (14.66), then the intervention is again seen as costing less and being more effective (-£25). All four scenarios (including the base case) suggest that the OGEP intervention may be more effective and cost less than previous care.

When the base case results of the costs of the intervention are used with the base case results of the EQ-5D-5L score, the cost per unit of improvement was -£12 633 indicating that the intervention costs less and is more effective than usual care. When the lower 5% bound of net cost (-£363.90) is used with the upper 95% bound of net utility (0.064), then the intervention is again seen as costing less and more effective than usual care (-£5686). Thus, both cost per improvement of LYMPROM and EQ-5D-5L scores indicate the intervention costs less and is more effective than usual care.

Discussion

In common with other studies the results of this evaluation suggest that due to deficiencies in knowledge, competence and confidence the expenditure surrounding lymphoedema and wounds is excessive (Phillips et al, 2016; Moffatt et al, 2017;2019; Guest et al, 2020). The proportion of patients enrolled into OGEP for wound management by community nurses was 86% and 80% who had a lymphoedema severity rated as ‘severe’ or ‘complex’. This evaluation as part of the all-Wales rollout of the OGEP intervention raising knowledge in lymphoedema management has shown positive benefits compared with ‘usual care’. Improving community nurses' knowledge while working directly on the ground has many benefits, including learning in action, reflection, practical skills and a reduction in accessing study leave. One could argue that challenging and supporting change in existing behaviours and attitudes is beneficial as the reflection is completed in everyday practice, and then may be embedded as the norm. These open discussions on the consequences of inappropriate prescribing and lymphoedema management can also support reflection on practice, which could be used by nurses as evidence in any future revalidation process with the Nursing and Midwifery Council.

An important finding of the evaluation was that OGEP enabled considerable changes to resource use and therefore costs. Overall, including all resources the total mean per-patient costs were £1457.10 before and £964.40 (including the addition of intervention costs) after the introduction of OGEP. This indicates a cost difference of £492.70 across 561 patients (CIs -£621.50, -£363.90), which was statistically significant (P<0.001). When OGEP was piloted in 2017 the mean patient cost difference was £641.90 but was only based on 100 patients (Humphreys et al, 2017; Thomas et al, 2017). These meaningful cost reductions should be considered in the context of increasing pressures on healthcare resources and NHS finances promoting constant evaluation of the efficiency and effectiveness of provisions. There is currently still a shortage of literature concerning the economic costs and benefits related to lymphoedema management. This evaluation tentatively proposes cost avoidance in terms of resources and staffing that could be expanded in future research.

Cellulitis also represents a significant burden for the NHS, causing admissions, antibiotic costs and appointments with primary care (Burian et al, 2021; Humphreys et al, 2023). The OGEP intervention supporting improved lymphoedema management also reported a decreased cellulitis occurrence. If the incidence of cellulitis reduces so does the pressure on unscheduled care and the financial burden (Burian et al, 2021). The impact on number of falls reported also decreased with the introduction of OGEP. This could be related to a decrease in oedema allowing patients to wear appropriate footwear or maybe an improvement in postural stability (Doruk Analan and Kaya, 2019). Further research is required to understand the link between lymphoedema and falls but a statistically significant reduction warrants additional investigation.

Another vital finding of this evaluation was the evidence of considerable patient HRQoL gains when LYMPROM and EQ-5D-5L are analysed. The differences in EQ-5D-5L and LYMPROM scores provide important food for thought, given that the hallmark of cost-effectiveness is that health gains are (sometimes) achieved through greater cost. The effect sizes in this sample size (n=561) are large and will in turn indicate a clinically meaningful difference. The results continue to show a trend for patient HRQoL gain and this needs continuous evaluation and exploration to maintain the level of care provided by the OGEP intervention. Although the all-Wales evaluation was not originally set up to assess ‘value’, with improved costs and patient health outcomes, the authors believe that OGEP demonstrates value-based healthcare (Withers et al, 2021; Lawrence, 2022; Lewis, 2022).

Taking a more proactive approach in delivering evidence-based care and education is vital for NHS services. Raising early awareness and identification of oedema is paramount as ultimately it costs more to do nothing and maintain the status quo than it does to implement an OGEP model. Furthermore, as the turnover of staff is at an all-time high it is important that services retain staff and adopt the most effective and efficient approach for education and training to deliver long-term value within the NHS (Senek et al, 2023).

Limitations

The project design was limited in several areas particularly that there was no comparator or a matched control site. This was mainly due to it being unethical to withhold evidence-based lymphoedema treatment from patients who would benefit. Since there was no randomised comparator, the authors cannot definitely specify whether the cost decreases were a direct effect of OGEP; however, many of the patients seen had been on the community nurse caseload for years not months with limited improvements until OGEP was introduced. Some patients died during the evaluation thus 26 patients' data were removed from the analysis, nevertheless 561 patients' data before and after OGEP is a larger study population that previously reported (Humphreys et al, 2017; Thomas et al, 2017). Although the population is limited to one area of the UK with nearly all lower-limb lymphoedema, the age, fragility and sex of the patients did show some diversity. The researchers only reviewed patients after OGEP at 2 months, which could be seen as a potential limitation, therefore a more longitudinal review of these patients would provide further evaluation to ensure the benefits continue.

Conclusion

As the demands on lymphoedema and community services increase, new ways of working and delivering education with evidence-based care should be instigated. This analysis suggests implementing OGEP throughout NHS community services may offer reductions in resource costs and improvements in patients' outcomes. At a time of great austerity and public health deterioration, new care models should be considered to promote economic sustainability and improve patient outcomes. OGEP may, therefore, provide an innovative solution in future care delivery of best practice.

KEY POINTS

• Management of complications arising from lymphoedema such as wounds may place significant demands on resources, including staffing and product use
• Robust economic evaluations capturing costs and patient outcomes in lymphoedema management are rare
• In this evaluation community nurse visits and wound care nurse appointments decreased as did GP calls and cellulitis episodes
• Through the introduction of an ‘on the ground’ education programme (OGEP) the total mean per-patient cost decreased from £1457.10 to £964.40 over 2 months
• Introducing the OGEP significantly improved patient-reported outcomes and quality of life as measured by EQ-5D-5L and LYMPROM

CPD reflective questions

• Does attending a study day really change practice? Would someone working on the ground with you for at least 3 days implement more sustained change?
• How many patients with lymphoedema do you see daily?
• Reflect on your knowledge regarding bandaging lymphoedema patients. Do you feel confident and competent?
• Did you realise the full costs involved when treating patients with wounds and lymphoedema, taking into account staff and product utilisation?