Treating breast cancer-related lymphoedema at the London Haven: Clinical audit results $

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1 European Journal of Oncology Nursing (2006) 10, ARTICLE IN PRESS Treating breast cancer-related lymphoedema at the London Haven: Clinical audit results $ Eunice Jeffs The London Haven, Effie Road, Fulham Broadway, London SW6 1TB, UK KEYWORDS Lymphoedema; Manual lymph drainage (MLD); Breast cancer; Breast oedema Summary Lymphoedema is recognised as a significant management problem for both patients and clinicians. Around 25% of those undergoing axillary intervention as treatment for breast cancer will go on to develop some degree of lymphoedema, which will impact their everyday life and wellbeing [Moffatt et al., Quarterly Journal of Medicine 96, ; Mortimer et al., Quarterly Journal of Medicine 89, ; Tobin et al., Cancer 72, ]. This paper outlines an audit of the presenting characteristics of all 263 patients seen in The London Haven Lymphoedema Service (TLHLS) between 10th February 2000 and 4th June 2003 for treatment of breast cancer-related lymphoedema and reports outcomes of treatment: A total of 70% of patients with breast/trunk oedema achieved complete resolution of swelling within 12 months following a course of Manual Lymph Drainage. Patients with moderate severe and/or complicated arm swelling achieved a mean reduction of 40% in limb size over 12 months with a programme of intensive treatment and self-care measures. Patients with mild and uncomplicated arm swelling achieved a mean reduction of 30% in limb size over 12 months with self-care measures and minimal therapist input. Results highlight the key issues around current practice at the London Haven and the need for further research in promising areas in lymphoedema management. & 2005 Elsevier Ltd. All rights reserved. Zusammenfassung Sowohl Patienten als auch Kliniker wissen, dass Lymphödeme schwierig zu behandeln sind. Ungefähr 25 % der Personen, die sich einer Brustkrebsoperation mit Entfernung der axillären Lymphknoten unterziehen, leiden im Anschluss an den Eingriff, was die Alltagsaktivitäten und das Wohlbefinden beeinträchtigt [Moffatt et al., 2003, Quarterly Journal of Medicine 96, ; Mortimer et al., Quarterly Journal of Medicine 89, ; Tobin et al., 1993, Cancer 72 (11) ]. $ This article was written while being a Lymphoedema Nurse Specialist at The London Haven. For further information contact Caroline Hoffman, Therapies Director at Breast Cancer Haven: Tel.: ; fax: , cjh@breastcancerhaven.org.uk /$ - see front matter & 2005 Elsevier Ltd. All rights reserved. doi: /j.ejon

2 72 E. Jeffs In diesem Artikel wird über die Symptome berichtet, die zwischen dem 10. Februar 2000 und dem 4. Juni 2003 bei 263 Patienten zum Zeitpunkt ihrer Aufnahme im,, The London Haven Lymphoedema Service (TLHLS) beobachtet wurden. Es handelte sich um Patienten, bei denen nach einer Brustkrebsbehandlung Lymphoedeme aufgetreten waren. Darüber hinaus wird in dem Artikel über die Ergebnisse der Lymphödem-Behandlung berichtet. - Bei insgesamt 70 % der Patienten mit Lymphödemen im Brust-/Rumpfbereich gingen die Schwellungen im Anschluss an eine manuelle Lymphdrainage innerhalb eines Jahres vollständig zurück. - Unter einer intensiven Behandlung sowie Selbstbehandlungsmaßnahmen wurde bei Personen mit mäßigen bis starken und/oder komplizierten Armschwellungen über 12 Monate eine mittlere Reduktion des Armumfangs von 40 % erzielt. - Mit einer Minimaltherapie und Selbstbehandlungsmaßnahmen wurde bei Personen mit milder und unkomplizierter Armschwellung über 12 Monate eine mittlere Reduktion des Armumfangs von 30 % erzielt. Diese Ergebnisse sprechen für die Wirksamkeit der im London Haven angewendeten Behandlungsmaßnahmen sowie für die Notwendigkeit weiterer Forschungsaktivitäten auf dem Gebiet der Lymphödem-Behandlung. & 2005 Elsevier Ltd. All rights reserved. Introduction Lymphoedema is a tissue swelling which results from inadequate functioning of the lymphatic system (International Society of Lymphology, 2003; Stanton et al., 1996); it is estimated that 25% or more of people who receive radiotherapy or surgery to the axillary region as part of their breast cancer treatment will subsequently develop swelling of that quadrant, whether affecting the arm or trunk (Logan, 1995; Mortimer et al., 1996). Lymphoedema has a significant physical, social and psychological impact on the individual as they are required to cope with an increased limb or breast size, altered body image, distortion in shape, pain/discomfort and reduced function, which may affect their ability to carry out daily activities or even their paid employment (Moffat et al., 2003; Tobin et al., 1993; Woods et al., 1995); in some cases the pain/discomfort is sufficient to require analgesia (Moffat et al., 2003). While arm swelling is generally recognised as a complication of breast cancer and its treatment, breast oedema has largely been ignored; the resulting problems (pain/discomfort and distortion) are minimised, and many patients are told their breast swelling should resolve over a period of months or years but are not given any support or treatment to manage those symptoms. Treatment is focused on reducing the swelling, minimising complications, and teaching the individual to self-care and maintain the improvements long-term. In the UK treatment is based on four cornerstones: compression, exercise, skin care and massage (British Lymphology Society, 2001a, b), with the components of treatment combined according to the severity of the condition, whether the individual has (1) no swelling but is known to be at risk of developing lymphoedema, (2) mild and uncomplicated lymphoedema, (3) moderate to severe and/or complicated swelling, or (4) oedema and advanced malignancy (British Lymphology Society, 2001a, b). The combination of compression (to counteract the effect of gravity, limit capillary filtration and provide a counterforce to muscle activity) with exercise enhances lymph drainage, and good skin care is important to prevent infection and thus avoid a further overloading of the impaired lymph system (Mortimer, 1995). Manual Lymph Drainage (MLD) is designed to move fluid from swollen areas to those areas of the body where it can naturally drain; a self-massage technique has been developed to enable individuals to maintain and potentially gain further improvement (British Lymphology Society, 2001a, b). A strong emphasis is also placed on equipping individuals known to be at risk of developing swelling (i.e. following cancer treatments) with skin care and exercise programmes designed to improve lymph drainage. Lymphoedema treatment at The London Haven The London Haven Lymphoedema Service (TLHLS) opened on 10th February 2000 offering a comprehensive treatment programme for individuals with

3 Treating breast cancer-related lymphoedema at the London Haven: Clinical audit results 73 lymphoedema as a result of breast cancer and its treatment (Table 1); this subscribed to the BLS recommendations (British Lymphology Society, 2001a, b) and evolved over the following 3 years to incorporate the lessons learned from constant review of the results of treatment and feedback from individual patients. Education programmes were developed for the at risk group, with a regular information and exercise class (and leaflet) which proved very popular with those visiting the centre both during and following their breast cancer treatment. Those with established swelling were treated according to the severity of their swelling (Table 1), with the programme adapted to the goals and commitment of the individual. Optimum treatment was provided as early as possible, with the goal of limiting the development of complications, thus potentially reducing the cost (in terms of time required and equipment) of future treatment both to the health service and the patient. Describing the audit An audit of TLHLS patient records was undertaken over the summer of 2003 in order to identify effective and ineffective treatment programmes, inform the decision-making process regarding where to focus future efforts and funding, provide a report to the Smith s Charity who had substantially funded TLHLS. Over a period of 4 weeks in May and June 2003 the records were examined of each patient who had attended the Lymphoedema Service between 10th February 2000 and 4th June Key information was collected for analysis, including onset and duration of swelling, severity (size and extent) of swelling at first presentation, lymphoedema treatment received, changes in severity over time. The collected data for a total of 263 patients was entered into an Excel-based spreadsheet to enable analysis of the presenting characteristics and comparison of the effectiveness of different treatment packages. Patients with oedema and advancing disease, those with no detectable swelling or an unknown degree of swelling (i.e. bilateral arm oedema, or unable to be measured) were excluded from the evaluation of treatment. We also excluded 95 patients with established lymphoedema who were assessed but chose not to receive any lymphoedema treatment from TLHLS. Of the remaining 168 patients, 74 (44%) had follow-up data for the full 12 month period enabling analysis of treatment outcomes. Presenting characteristics A total of 263 patients (260 women and 3 men) were assessed by TLHLS, the majority of whom (41%) were referred by the Breast Care Nurses and oncology clinic doctors at a nearby large teaching hospital without a lymphoedema service. A substantial number were from other London hospitals, often referred by Breast Care Nurses who were unable to provide the required level of lymphoedema care. Patients were also prepared to travel from outside London to access lymphoedema care if there was no service in their locality; 11 patients (4%) came because their local lymphoedema service had closed. The majority of patients (156, 59%) had developed swelling within 12 months of their initial cancer treatment; 92 patients (35%) developed swelling within 3 months of receiving their initial axillary surgery or radiotherapy. Fifty-three patients (31%) accessed treatment within 3 months of developing swelling, which is considered to be the time period when the oedema is most easily treated. However, 29 patients (17%) took more than 12 months to access any lymphoedema treatment; the most common reasons given were lack of locally available treatment, not being informed about lymphoedema and its treatment, and difficulty finding and accessing the available services. Severity of swelling at first presentation The severity of swelling (% excess limb volume) was determined by measuring both limbs using an optoelectric measurement device called the Perometer TM ; this limb volume method was chosen because it was well validated (Stanton et al., 1997), simple and quick to operate, and the limb shape and contours could be immediately displayed graphically (Sitzia et al., 1997). The volume measurements of the left and right arm were compared to determine the percentage excess limb volume (% ELV), and progress determined by comparing the most recent ELV with the original ELV. Mild swelling was defined as less than 20% ELV, moderate swelling as 20 40% ELV, and severe swelling as more than 40% ELV. A distinction was made between moderate and severe swelling in order to determine whether there was any difference in the outcome of treatment, since it had been suggested by many lymphoedema specialists that intensive

4 74 E. Jeffs Table 1 Lymphoedema treatment provided by The London Haven Lymphoedema Service (adapted from British Lymphology Society (2001a, b). Severity of swelling Aim of treatment Treatment regime Mild and uncomplicated arm swelling o20% excess limb volume Normal arm shape No trunk swelling Reduction in size Prevention of the complications of swelling Self-care Hosiery Daily exercise regime to improve lymph drainage and strengthen the muscles to cope with demands of everyday life Skin and general care of arm, i.e. recommended activity levels, prevention of infection Moderate severe and/or complicated arm swelling (includes one or more of following): 4 ¼ 20% excess limb volume Distorted arm shape Breast or trunk swelling Breast or trunk swelling (with no arm swelling, or very minimal arm swelling) Reduce size Improve shape Soften the tissues Improve appearance of swollen area Reduce any co-existing trunk oedema Reduce the size Improve the shape of the breast Soften the tissues Reduce the heaviness and pain Intensive treatment 3 weeks daily treatment (Monday Friday) with multi-layer bandaging, MLD, exercise and skin care Followed by self-care regime (as above) This course is repeated in severe cases NB: the patient undertakes self-care measures while the intensive treatment programme is being arranged Intensive treatment One or more courses of MLD, involving 3 5 MLD sessions per week (each 1 h in length) for 2 or more consecutive weeks Self-care regime or skin, general arm care and exercise (as above) Self-massage to maintain benefits of MLD Where minimal (mild and uncomplicated) arm swelling coexists, hosiery is fitted Oedema and advanced malignancy: Symptom control Symptom control Oedema in the presence of uncontrolled metastatic cancer, often with multiple symptoms Use of any of the above measures according to need and life expectancy Self-care measures (as above) as able Close liaison with the clinicians/ palliative care team caring for the individual treatments tended to be reserved for the more severe lymphoedema cases due to limited resources (anecdotal evidence). A large number of patients presented with complications of swelling: breast/trunk swelling, distorted limb shape, firm and thickened subcutaneous tissues, active and progressive cancer. The presence of breast/trunk oedema was determined clinically, through observation and palpation of tissues, and by patient report (i.e. increased

5 Treating breast cancer-related lymphoedema at the London Haven: Clinical audit results 75 2% 5% 14% % 434 5% 25% 16% no swelling mild & uncomplicated arm swelling mild arm swelling with complications moderate arm swelling +/- complications 20% severe arm swelling +/- complications breast / trunk swelling only bilateral swelling assessment intensive treatment 1608 MLD monitoring Figure 2 Number of treatment sessions provided by TLHLS (MLD ¼ Manual Lymph Drainage). Figure 1 Severity of swelling at presentation (% number patients). size of affected breast, heaviness, marking of bra), since there is no satisfactory objective measure to determine the severity of breast oedema (Martlew, 2000). Thirty-four patients (13%) had breast swelling as their main or only problem, and nearly half (52/119, 44%) of those with mild arm swelling (o20% ELV) had either a coexisting distorted limb shape or breast/trunk swelling. Of the 56 patients with moderate severe arm swelling, the majority (41, 73%) had one or more complications (Fig. 1). Treatment sessions A total of 2486 treatment sessions (Fig. 2) were provided to the 168 patients who were treated at TLHLS. The greatest proportion of the sessions (1608, 65%) were MLD given either as part of intensive treatment of breast or arm swelling, or during the stabilisation period following completion of the intensive treatment period as the patient moved towards maintenance of treatment benefits using self-care measures alone. The optimal intensive treatment programme (British Lymphology Society, 2001a, b; International Society of Lymphology, 2003) was offered to all patients with moderate severe and/or complicated arm swelling. Only 19 patients were willing and able to commit to this 3 week intensive programme (Table 1); several patients required a longer course due to the severity or complexity of their swelling and, where necessary, patients underwent further courses of treatment at a later date. Following completion of the intensive treatment phase the patient was fitted with appropriate hosiery and continued their skin care and exercise programme at home. They attended TLHLS for regular monitoring of limb size and shape, and MLD was also given to assist with maintaining the reduced oedema, usually one session per week for 1 month until the swelling was stable in size and shape; in the few cases where it was necessary to recommence intensive treatment to regain control of the swelling, a few days of multi-layer bandaging and MLD was usually sufficient, and this helped to prevent further problems. Those 58 patients with moderate severe and/or complicated arm swelling who were unable or unwilling (usually because of the expected impact to their everyday lives) to undertake 3 weeks daily treatment were offered a self-care regime of hosiery, exercise and skin care with the aim of preventing further increase in swelling and associated complications. Twenty-eight of these patients also received 2 weeks supplementary MLD (6 one hour sessions) with the aim of improving their symptoms rather than just containing the swelling;

6 76 although it was not known what sustained benefit would be achieved, the patients were willing to commit to the extra MLD sessions as they could more easily incorporate this into their lives than daily multi-layer bandaging. All 39 patients with breast or trunk swelling as their main or only problem were offered a course of intensive treatment with MLD (Table 1), and also taught skin care and a daily exercise programme for the arm and trunk. During the MLD treatment period the patient was taught their own massage programme and, in the following month, they were treated weekly with MLD to prevent deterioration of the swelling and to ensure they were confident and effective in their self-care programme; thereafter the patient required infrequent monitoring and adjustment of their selfmassage technique and most were ready for discharge 12 months later. Five patients had coexisting mild arm swelling and preferred to not wear a sleeve; their daily exercise programme was the main form of treatment for the arm swelling on the understanding that a sleeve would be fitted if there was no improvement within 1 3 months, although none required this. Mild and uncomplicated arm swelling was treated primarily with an exercise and skin care programme and good, well-fitting hosiery provided by TLHLS (further hosiery was obtained from the local referring hospital); it was expected that hosiery and exercise would effect a substantial reduction in size, and these 52 patients were taught to monitor their own condition. A small group of 13 patients with mild and uncomplicated swelling were also given a short course of supplementary MLD in an attempt to speed up the reduction of swelling. Initially the patient was seen every 1 3 months until they were confident with their self-care programme and the limb size reduction had stabilised. Thereafter the patient was encouraged to monitor their own swelling and was reviewed by the lymphoedema specialist at 6 month intervals; they were discharged once the patient and lymphoedema specialist felt the maximum benefit had been achieved. Seventy-two patients (43%) were successfully treated, achieving the maximum improvement expected by both patient and lymphoedema specialist, and discharged with ongoing hosiery provision arranged where necessary through their local breast cancer clinic; 48 patients (29%) were continuing to receive treatment at the time of the clinical audit, and a further 48 patients (29%) started but, for reasons unknown, did not complete their lymphoedema treatment or monitoring at TLHLS. Results of Treatment Treating mild and uncomplicated lymphoedema The standard self-care regime of hosiery, exercise and skin care was given to 39 (75%) of the 52 patients with mild and uncomplicated arm swelling. A mean reduction of 30% ELV was achieved by the 13 patients for whom 12-month follow-up data was available (Table 2 and Fig. 3). A further 13 patients (25%) with mild and uncomplicated arm swelling were each given a short course of MLD (usually 6 sessions over a 2 week period) in addition to the standard self-care measures, with the aim of enhancing the benefit of self-care measures alone. A mean reduction of 20% ELV was achieved by the 7 patients for whom 12- month follow-up data was available, which was less than the mean improvement for self-care measures alone (see Table 2 and Fig. 3). Further examination of these patient records revealed that the 3 and 6 month results were very positive (Fig. 3) but that, some time prior to their 12 month follow-up appointment, 4 of these patients had decided to stop wearing their sleeves because of the good progress they had made, and unfortunately some of the swelling had returned. Treating breast/trunk oedema One or more courses of MLD were provided for the 39 patients who presented with breast or trunk swelling as their main or only problem; they were also instructed in a self-care programme that included self-massage of the breast/trunk following the MLD course. MLD proved a very satisfactory treatment for these individuals: 14 (70% of the 20 individuals with 12 month data) had no clinically detectable breast or trunk swelling at 12 months. Further examination of their records revealed that, of the 6 patients with swelling remaining at 12 months, 5 were subsequently successfully discharged without any swelling following further treatment; the other patient failed to complete the treatment programme. Treating moderate severe and/or complicated lymphoedema E. Jeffs Intensive treatment was offered to all 77 patients with moderate severe and/or complicated lymphoedema, although only 19 (25%) underwent one or more course of intensive treatment; this

7 Treating breast cancer-related lymphoedema at the London Haven: Clinical audit results 77 Table 2 Results of treatment at TLHLS. Moderate severe and/or complicated arm swelling Breast oedema Mild and uncomplicated arm swelling Self-care only Self-care + MLD Intensive treatment+ self-care MLD+ self-care Self-care + MLD Self-care Number of patients treated at TLHLS Mean % ELV on presentation N/A Range % ELV on presentation N/A Total number of treatment sessions Average number of treatment sessions per person Number of patients with 12 months data Mean % ELV at 12 months N/A Mean reduction in ELV over 12 months N/A Number of patients with resolved breast/trunk oedema N/A N/A 70% 100% 0% N/A % ELV at start self care (13 patients) 3 months 6 months 12 months self care plus MLD (7 patients) Figure 3 Comparing the results of treatment for mild and uncomplicated arm swelling. % ELV at start intensive treatment (16 patients) 3 months 6 months 12 months self-care (3 patients) self-care plus MLD (15 patients) Figure 4 Comparing the results of treatment for moderate severe and/or complicated arm swelling. included 5 patients with a mild degree of swelling (o20% ELV) but where complications of the swelling indicated that they would benefit from intensive treatment. There was 12 months of data for only 16 patients (Table 2 and Fig. 4). The results (Fig. 4) indicate the overall effect of intensive and maintenance treatment over the 12- month period from first assessment rather than the actual reduction in limb size obtained during the 3 week intensive treatment period. These snapshot figures show that individuals benefited from the intensive phase of treatment, although they do not show how well they maintained the immediate benefits of intensive treatment, nor whether the individual improved or deteriorated prior to receiving the course of intensive treatment. Each patient receiving intensive treatment initially required a relatively large number of therapy sessions but, within 12 months, swelling in this complex group had reduced by 40% and all associated breast swelling (7 patients) had gone; in addition 6 patients had little or no oedema remaining in the upper arm. This reduction of 40% ELV compares favourably with the anecdotal reports by colleagues at Lymphology conferences in the UK, but is less than the reductions reported

8 78 (at 12 months) in the lymphology literature (Casley- Smith and Casley-Smith, 1996; Boris et al., 1997). Badger et al. (2000) reported treatment results at 24 weeks, with a mean reduction of 30% for those who received intensive treatment compared with a mean reduction of 15% for those who wore hosiery and undertook self care measures for the period of the trial. For those patients unable or unwilling to undertake the recommended intensive therapy, who instead received 6 sessions of MLD over 2 weeks in addition to a self-care regime of appropriate hosiery exercise and skin care, a mean reduction in swelling of 25% was documented after 12 months (Table 2 and Fig. 4). This is a considerable improvement although, as expected, it was not as great as that achieved with intensive treatment. Unfortunately, there was insufficient data to meaningfully compare the results of self care measures alone with the other treatment results; the mean reduction (3 patients only) at 12 months was only 9% (Table 2). Conclusions The audit successfully identified key aspects of successful lymphoedema treatment, reinforcing the importance of intensive programmes for the treatment of breast oedema and moderate severe or complicated arm swelling. The treatment of breast oedema was one of the most satisfying areas of TLHLS programme, with swelling (and coexisting pain) significantly reduced: 70% of the patients achieved complete resolution of breast oedema within 12 months with a short programme of intensive MLD followed by a self-care exercise, skin care and massage programme. In giving them the skills to maintain this improvement long term and to return to a normal lifestyle, the patients also felt they had regained more control of their body. The greatest improvement in arm swelling (Table 2) was found in those with complex arm lymphoedema who, with intensive treatment, achieved a mean reduction of 40% in limb size at 12 months and complete resolution of any coexisting breast oedema. The self-care package produced poor results (as expected) in this moderate severe group; however, the self-care plus MLD package produced a 25% reduction over 12 months and therefore warrants further investigation, particularly for those instances where individuals are unable or unwilling to commit to 3 weeks in multilayer bandages. Simple self-care measures with minimal therapist input effected a 30% reduction for those with mild and uncomplicated arm swelling. The addition of MLD to the self-care programme produced immediate extra benefit but this was not maintained at 12 months; further study is required to explore this area thoroughly and to identify strategies for maintaining the immediate benefits of MLD. It was beyond the scope of this audit to examine the cost of lymphoedema treatment. However, this is an important area requiring future study to inform health care providers and funders of the cost benefit implications of treatment versus no (or less than optimum) treatment. Health care professionals need to be particularly alert to identify swelling during the cancer treatment and follow-up period as, although 59% had developed swelling during this time (i.e. within 12 months following their original axillary surgery or radiotherapy), only 31% accessed treatment within 3 months of developing swelling, which is the time period when the oedema is considered most easily treated. The results of this audit suggest that further work is required to identify whether there are sufficient treatment facilities available, and easily accessible to the average patient, as 17% of patients took more than 1 year to access any lymphoedema treatment. The discussion of UK treatment programmes and the results of treatment (other than individual case studies) has largely been oral, through lymphoedema conferences (i.e. British Lymphology Society), individual teaching sessions, and private discussion between lymphoedema specialists; only a few practitioners have published the results of their treatment (i.e. Badger et al., 2000; Todd, 1999; Woods et al., 1995). Many practitioners have lacked the time, motivation, or encouragement to publish the results of their treatment programmes, and it is hoped that publication of this audit will stimulate debate and encourage practitioners to analyse and share their results (formally and informally) with their colleagues for the ultimate benefit of the patient. Acknowledgements E. Jeffs The author would like to acknowledge the advice and encouragement of Dr. John Lepper, statistician, in developing the audit protocol and analysing the data and the generous financial support from the Smith s Charity.

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