Lymphoedema/chronic oedema is a chronic condition causing swelling, pain and skin problems, as well as functional and mobility issues. It is caused by a lymphatic system failure, which occurs when the transport capacity is reduced by overload, congenital abnormalities or through the removal of lymph nodes because of malignancy. Obesity, cellulitis, cardiovascular conditions, immobility and ageing are among the factors involved in developing lymphoedema. In an epidemiological study in the UK by Moffatt et al (2017), the crude prevalence of lymphoedema was 3.93 per 1000 of the population rising to 28.75 per 1000 in those aged 85 or over.
The impact of lymphoedema can affect individuals physically, psychologically, emotionally and socially (Thomas et al, 2020). Reports of increasing falls, superficial wounds, difficulty in accessing footwear, anxiety and pain are commonly encountered. People with lymphoedema also suffer from repeated cellulitis episodes, which can account for 2-3% of all hospital admissions (Posnett and Franks, 2008). Furthermore, the cost of managing lower limb wounds in patients, many of whom have lymphoedema, was estimated to be more than £5 billion per annum in 2015 (Guest et al, 2015). All told, lymphoedema is a burden to both the individual and, economically, to the NHS.
In Wales, the Welsh Government supports a national lymphoedema service, Lymphoedema Network Wales (LNW), which was established in 2011 (Thomas and Morgan, 2017). Referrals from people living in care homes to the LNW were infrequent and those who were referred often had complex lymphoedema with numerous costly complications. Referrals required reactive, not proactive, care even though the likelihood of people having lymphoedema in the care home environment was high due to known comorbidities and risk factors such as an elderly population and immobility. Moffatt et al's (2019) research suggested that 52% of care home residents in the UK and Australia have lymphoedema, with 23% having a past medical history of recurring cellulitis.
It was also apparent that the care home staff did not make referrals to lymphoedema clinics. Instead, a GP had been asked to review and refer if appropriate. Although LNW provides accredited education, care staff attendance has always been very low. It was therefore hypothesised that awareness of lymphoedema was limited and education was needed within nursing and residential homes. It was also assumed that care staff were unaware that referrals to LNW could be made by any caring professional, negating the superfluous wait and additional burden for GPs to attend and refer. Educating and raising awareness of lymphoedema is very important in maintaining the health and wellbeing of residents of care homes. It could also decrease the risk of further costly complications such as cellulitis, superficial wounds and the incidence of falls requiring possible hospital admissions.
Working with the Welsh Government/1000 Lives Campaign, an education pilot was established for LNW to deliver existing teaching tools developed by the On the Ground Education Programme (Humphreys et al, 2017) directly within the care home setting in one health board area in Wales with a population size of 290 000. The funding in January 2019 supported the employment of a lymphoedema specialist (a role shared between two specialists) working 1 day a week for 6 months. This specialist would be able to disseminate the lymphoedema education tool, consisting of an e-learning package, lymphoedema videos, and lymphoedema literature, including the LNW Wet Leg Pathway (Morgan and Thomas, 2018), and provide interactive group learning sessions.
Aims
The aim of the education pilot was to raise awareness and knowledge of lymphoedema among care staff in nursing and residential homes in one health board area.
By raising awareness and knowledge care staff should then be able to identify residents with lymphoedema, prompting a timely referral to the local lymphoedema service. Care staff should also be able to initiate simple effective management strategies such as skin care, positioning and exercise.
The specific objectives of the education pilot were to:
Methods
All 47 care homes in one health board area were contacted via email, letter and/or telephone, informing them of the lymphoedema education pilot and the potential to participate. A visit was mutually agreed with care home managers/staff to provide them with information on the lymphoedema education tool, which included e-learning, videos, a lymphoedema learning pack and a group teaching session. As well as the education tool, each home manager was asked to allow their care staff to accompany the lymphoedema specialist, who would carry out a scoping review of their residents to identify any person with limb swelling. The scoping review of all residents gathered anonymous data on gender, age, presence of lymphoedema, wound dressings in situ, mobility and footwear. The scoping review would allow greater discussions (away from the residents) and the building of confidence in recognising lymphoedema among non-registered-nurse care staff. Care staff initiated conversations with residents and asked them how their legs were feeling and whether they had any swelling. Carers were asked not to include any residents who they felt would be unsuitable for inclusion, for example if they were unwell, sleeping or were unable to answer questions because of cognitive impairment.
If a carer identified a resident with lymphoedema, a referral form was immediately completed jointly with the lymphoedema specialist instead of referring to a GP. Data were also collected on whether the resident had experienced cellulitis or falls and if a district nurse was attending the home. A second educational visit would be planned for all care homes, including an additional dedicated group education session to consolidate learning.
Data collection measures
All data were collected on-site in the care homes via paper copies. These data were completely anonymous with no personal details. Data were then transferred onto an MS Excel spreadsheet, cleaned and checked by a project manager. The data collected included the:
If a referral form was completed, this was scanned and sent directly to the local lymphoedema service and a hard copy kept in the resident's file in the home.
Ethics and research governance
The Abertawe Bro Morgannwg University Health Board Research and Development Board deemed the project a service development, thus ethical and research governance approval was not sought. However, because the anonymous datasets were analysed by Swansea University College of Human and Health Sciences, ethical approval was sought from and granted by the College's Ethics Committee.
Intervention costs
An account of the resources and costs of providing the education intervention was produced by the lymphoedema specialist (Table 1). The specialist worked one day a week on the project, with the education component lasting 2 hours per day. This was used to derive a cost per care worker educated, as shown in Table 2.
| Cost items | Unit cost per hour | Total cost | Unit cost source/description | Comments/assumptions made |
|---|---|---|---|---|
| 1 nurse (band 7) | £53 x 2 hours = £106 | £2544 | PSSRU band 7 | Based on 1 day a week over 6 months (24 days) |
| Number of care staff educated | Cost per care home staff member | Cost per care home resident | ||
| 1261 | £2.00 | £2.65 | ||
PSSRU=Personal and Social Services Research Unit
| Health service resource | Unit cost (£) | Source |
|---|---|---|
| GP home visit (per out-of-surgery visit lasting an average of 23.4 minutes) | £131 | PSSRU 2013 (inflated to 2018 prices using Bank of England (BOE) calculator) |
| Community nurse home visit (district nursing sister or district nurse) | £82 | PSSRU 2015 (inflated to 2018 prices using BOE calculator) |
| Non-elective surgery as an inpatient | ||
| Unspecified oedema with CC score 2+ (non-elective long stay) (based on average length of stay 4 days) | £1939 | NHS reference costs (2017/2018) |
| Unspecified oedema with CC score 2+ (non-elective long stay) | £317 | NHS reference costs (2017/2018) |
| Average unit cost of ‘other injury’, assumed to be a fall | £2184 | NHS reference costs (2017/2018) |
CC=complications or comorbidities; Excess bed costs=added on top of national average costs when stay is longer than national average stay; PSSRU=Personal and Social Services Research Unit
Resource use
Resource use associated with residents in the scoping review with lymphoedema, cellulitis, falls, and so on, was valued in pounds sterling using a price year of 2017/18 from national published sources of NHS unit costs (NHS Improvement, 2018) and the Personal and Social Services Research Unit (PSSRU) (Curtis and Burns, 2018). The analysis was undertaken in MS Excel and SPSS Version 22 for Windows.
Results
Forty-four out of 47 care homes within one health board area in Wales responded to the initial emails/letters and were involved in this education project. In total, 1216 education packs were issued to care home staff, supporting staff in recognising lymphoedema as well as improving confidence so that they were able to refer directly to the local lymphoedema service. All managers were issued with a ‘manager's pack’, which provided a master copy of the education tool for any newly employed staff.
Care staff and the lymphoedema specialist jointly reviewed 960 residents and completed the anonymous data form. Not all residents were included due to cognitive impairments, illness or unwillingness to answer a carer's questions. As shown in Table 3, 73% of residents were from a residential home and 27% from a nursing home. Nearly three-quarters were female, and 45% were between the ages of 80 and 89 years.
| Characteristic | Number | Percentage |
|---|---|---|
| Type of home | ||
| Nursing home | 263 | 27% |
| Residential home | 697 | 73% |
| Total | 960 | 100% |
| Gender | ||
| Male | 268 | 28% |
| Female | 692 | 72% |
| Total | 960 | 100% |
| Age | ||
| 40−49 | 1 | 0 |
| 50−59 | 13 | 1% |
| 60−69 | 38 | 4% |
| 70−79 | 167 | 17% |
| 80−89 | 429 | 45% |
| 90−99 | 295 | 31% |
| 100−109 | 17 | 2% |
| Total | 960 | 100% |
| Mobility | ||
| Independently mobile | 131 | 14% |
| Mobile with aid | 300 | 31% |
| Mobile with assistance | 325 | 34% |
| Wheelchair user | 87 | 9% |
| Bedbound | 117 | 12% |
| Total | 960 | 100% |
Lymphoedema identification
Of the 960 care home residents, 262 (27%) were identified as having lymphoedema in the scoping review. Of those, 261 (99.6%) had lymphoedema in their lower limbs, and additionally, 91% of those 261 had bilateral oedema. If the care staff identified lymphoedema, the accompanying lymphoedema specialist coded the severity of swelling based on the LNW Outcome Severity Scale (Thomas and Morgan, 2017). Of the 262 residents, 162 (62%) (17% of 960) were considered to have ‘mild’ lymphoedema; 67 (25%) (7% of 960) ‘moderate’; 16 (7%) (2% of 960) ‘severe’; and 17 (6%) (2% of 960) ‘complex’. Due to age and immobility factors, the remaining 698 (73%) residents were categorised as being ‘at risk’. As can be seen in Table 4, out of the 262 residents identified with lymphoedema, only 35 people (13%) were already under the care of the local lymphoedema service.
| Type of lymphoedema | Number identified | Attending a lymphoedema clinic |
|---|---|---|
| At risk | 698 | 0% |
| Mild | 162 | 13/162 (8%) |
| Moderate | 67 | 14/67 (21%) |
| Severe | 16 | 2/16 (13%) |
| Complex | 17 | 6/17 (35%) |
| Total | 35/262 (13%) |
Cellulitis
Of the 960 residents in the care homes, 31 (3.2%) reported having a current or previous episode of cellulitis. Two residents were identified as having acute cellulitis during the scoping review, which prompted immediate antibiotic treatment. Of the 31 residents identified, 19 (61%) reported one episode of cellulitis; 7 (23%) had two episodes; 4 (13%) had three episodes, and one person (3%) reported four episodes of cellulitis. Furthermore, the carers/residents also reported that of the 31 cellulitis episodes, 4 had required hospital admission. Of the 31 residents who reported cellulitis, 25 had lymphoedema (81%), and 3 (10%) were known to the lymphoedema service. Based on NHS reference costs (NHS Improvement, 2018), the cost of cellulitis was £7756 over 6 months.
Wounds
Eleven residents (1%) were identified as having a wound during the scoping review. All 11 residents had a wound on their lower limb, with four on their left and five on their right limb. Two residents had wounds on both limbs. Six of the residents reporting wounds (55%) had been visited by either a district nurse (DN) or tissue viability nurse (TVN). As shown in Table 5, carers/residents reported that district nurses had attended at various times over the past 6 months (between 8 and 60 visits). The cost implications of these visits suggest that around £18 000 had been spent purely on nursing costs. All the residents identified with a wound also had lymphoedema, and only one was known to the lymphoedema service.
| Wounds requiring district nurses/tissue viabiity nurse attendance | Number (n=11) | Percentage |
|---|---|---|
| Yes | 6 | 55% |
| No | 5 | 45% |
| Number of wounds requiring visits | Number of DN/TVN visits | Percentage of patients with wounds requiring visits (n=6) |
| 1 | 8 | 17% |
| 2 | 24 | 33% |
| 1 | 48 | 17% |
| 2 | 60 | 33% |
Falls
Of the 960 residents in the scoping review, 40 (4%) reported having had a fall in the last 6 months. Of the 40 residents identified, 22 (55%) had fallen once; 12 (30%) had fallen twice; 3 (8%) had fallen 3 times; 2 (5%) had fallen 6 times and lastly, 1 person (3%) had fallen 12 times. Of those 40 residents identified as falling, 28 (70%) had lymphoedema, and only one was attending the lymphoedema service.
Moreover, 31 residents were identified as being unable to wear shoes due to lymphoedema. Of the 960 residents, 134 (14%) were identified as wearing inappropriate shoes (too big/small, flip flops, etc) and had lymphoedema thus would be at an increased risk of a fall. The cost implications of these falls could be estimated at over £170 000 (NHS Improvement, 2018).
Referrals to a lymphoedema service
Based on the education received on lymphoedema, all carers now had increased awareness of the benefits of skin care, exercise and the importance of positioning/elevation. During the scoping review, when a resident was identified as having lymphoedema, a referral was immediately completed. Of the 960 residents, 35 (4%) were already under a lymphoedema service; 702 (73%) did not require a referral, 223 (23%) were referred by the care home/lymphoedema staff. Although 262 residents were identified as having lymphoedema, two residents were not referred to the local lymphoedema service as it was felt that by positioning and skin care, their mild oedema could be managed. Care staff understood that they could refer on if necessary if the condition worsened. Of the referrals sent to the lymphoedema service, 211 were routine, and 12 required an urgent referral as there was leaking and/or wounds present.
GP home visits
Before this education project, if the care staff had recognised a patient with limb swelling, they would have requested the local GP to visit and possibly refer onwards. Since the project, the care staff now feel competent to complete the referral form themselves. Thus, based on this educational project, 223 referrals have been made by care home staff themselves, preventing 223 GP home visits. The cost of a GP home visit is estimated to be £131, therefore, making the total potential costs avoided for these contacts as £29 213.
Resource use and costs
Through analysis of the anonymous data, the total resource utilisation was calculated to be £198 660 based on the last six months, including cellulitis, wounds and falls. This resource was split between each home type (nursing home £4368 and residential home £194 292). The cost of DN/TVN visits totalled £18 368 for residential homes. Nursing homes saw no DN/TVN visits occur. Again, no hospitalisations due to cellulitis were seen in nursing homes, whereas the cost to residential homes was £7756. The major cost driver seen for both home types was falls, with nursing homes equating to £4368 and residential homes significantly higher at £168 168. The cost of falls between the two home types equalled £172 536 or 87% of the total costs seen over 6 months.
As shown in Table 6, reviewing the data further suggests that costs do not start to accrue until the 70–79 age bracket, with the greatest cost usage seen in residents aged 80–89 years (£115 502). Residents identified with lymphoedema show almost twice the level of resource usage compared to a patient with no lymphoedema (£124 404 vs £74 256).
| Total costs by age group | Number | Direct NHS costs |
|---|---|---|
| 40−49 | 1 | 0 |
| 50−59 | 13 | 0 |
| 60−69 | 38 | 0 |
| 70−79 | 167 | £15 288 |
| 80−89 | 429 | £115 502 |
| 90−99 | 295 | £52 827 |
| 100−109 | 17 | £15 043 |
| Total | 960 | £198 660 |
| Total costs by lymphoedema | ||
| Yes | 262 | £124 404 |
| No | 698 | £74 256 |
| Total | 960 | £198 660 |
Statistical analysis
A series of Pearson correlation coefficient analyses were undertaken to identify any relationships between the variables collected. The analysis indicated strong correlations between lymphoedema and a risk of falls (Table 7).
| Correlations | Falls (shoes and swelling a risk of falls) | |
|---|---|---|
| Lymphoedema | Pearson correlation | 0.930* |
| Significant (2-tailed) | P<0.01 | |
| n | 960 | |
| Lymphoedema site | Pearson correlation | 0.926* |
| Sig (2-tailed) | P<0.01 | |
| n | 960 | |
| Lymphoedema under lymphoedema service | Pearson correlation | 0.920* |
| Sig (2-tailed) | P<0.01 | |
| n | 960 | |
| Lymphoedema severity | Pearson correlation | 0.668* |
| Sig (2-tailed) | P<0.01 | |
| n | 960 | |
Discussion
This education pilot indicated that there are several benefits to raising awareness and increasing knowledge of lymphoedema for care staff in nursing and residential homes. First, the education itself is inexpensive, and over 6 months can be calculated as around £2 per person educated and £2.65 per resident within care homes in this health board in Wales. Secondly, this education project highlighted the extensive costs attributed to lymphoedema, in particular, the high number of district nurse visits involved (£18 368), cellulitis hospitalisations (£7756), and the cost of falls (£172 536). Additionally, the education intervention instils confidence in care staff, allowing them to undertake referrals rather than first referring to a GP. From this project, 223 lymphoedema referrals should have been made to the local service, identifying an unmet clinical need. Care staff referrals negate the need for a GP appointment, which require a home visit. The total potential costs avoided for these types of GP contacts was around £29 213.
If lymphoedema progresses, it can increase the risk of the person developing wounds and cellulitis and can lead to falls, which are costly problems. Proactive intervention when lymphoedema is mild is far more effective in reducing unwarranted complications. Proactive care will also provide value for the patient and actively reduce the burden on the NHS.
The project has also demonstrated the possible risk link and the predictor of falls when a person has lymphoedema. This relationship is strongly highlighted in the statistically significant correlations between the risk of falls and having lymphoedema. This link needs to be further investigated, and more research studies are necessary to consider if having lymphoedema influences the level of falls. A study is underway investigating the incidence of lymphoedema in a falls clinic.
Despite excellent support from the care home managers, there were challenges faced during this education project.
Subsequently, to maintain awareness among the care homes, a generalised lymphoedema awareness poster was also disseminated and located in treatment rooms and lounges. To consolidate knowledge further, all the care homes were invited to ongoing lymphoedema educational events held locally.
During this educational initiative, the lymphoedema specialist also identified that 10 of the care home staff actually had lymphoedema with two of those having repeated episodes of cellulitis. These staff were assessed and provided with management and were also referred on to local lymphoedema services for ongoing advice and support.
A potential limitation of this study is the narrow perspective adopted—focusing on residents of care homes in one health board area. However, due to the nature of residents living in a care home setting, any productivity or wider societal perspective (such as loss of earnings) would not be appropriate. Further, the relatively short study period of 6 months may have limited the extent to which a full picture of the problem of lymphoedema in care homes is gauged. A longer study period would give a more complete picture and account for any variable changes such as seasonality. Moreover, the scoping was based on information provided by residents, carers, family members and community notes, therefore the data collected may be influenced by a subjective memory recall. However, even with the limitations we believe that this study reviewing 960 residents in care homes as part of the lymphoedema education pilot provides valuable information for further studies.
Conclusion
This educational project has identified the value of raising awareness of lymphoedema within care home settings in a health board in Wales. By improving carers' confidence in identifying lymphoedema they were able to refer residents to a local lymphoedema service directly, negating the need for GP visits. Furthermore, enabling care home staff to understand the importance of skin care and exercises to enhance the role of the calf muscle pump, will decrease the risk of further lymphoedema in other residents.
The analysis has provided the first in-depth examination of the potential economic benefits of education in a residential and nursing home setting. Our findings suggest there are substantial costs incurred by residents with lymphoedema and linked to cellulitis owing to hospitalisations, district nurse visits because of wounds and falls. These totalled £198 660 in 6 months. Potential costs saved due to the avoidance of a GP home visit was also estimated to be £29 213 over the same period. Further analysis of the potential cost avoidance by the education programme would provide a clearer picture of efficiency gains over the longer term.