Developing practice points for healthcare workers to optimise lymphoedema care in low and middle-income countries: a nominal group technique

doi:10.21203/rs.3.rs-1877866/v1

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Research Article

Developing practice points for healthcare workers to optimise lymphoedema care in low and middle-income countries: a nominal group technique

https://doi.org/10.21203/rs.3.rs-1877866/v1

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published 08 Jul, 2023

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Background: Lymphoedema is a common, distressing, and debilitating condition affecting over 200 million people globally. While the World Health Organization has developed a Wound and Lymphoedema Management guidance document to support lymphoedema care in low- and middle-income countries (LMIC), it mainly focuses on lymphoedema caused by wounds and infectious filariasis and has limited content on lymphoedema diagnosis and assessment. Several lymphoedema clinical practice guidelines have been developed for high-income countries (HIC), but some recommendations are unlikely to be feasible in low-resource settings.

Aim:

To develop practice points for healthcare workers that optimise lymphoedema care in LMIC.

Methods: A nominal group technique (NGT) was undertaken to gain consensus on which content from HIC guidelines are important and feasible to include in practice points for LMIC, plus other important advice or recommendations. Participants included experts, clinicians, and volunteers involved in lymphoedema care in LMIC. The NGT followed five key stages: silent ‘ideas’ generation, round-robin rationale, clarification, refinement and verification. The first, fourth and fifth stages were completed via email, and the second and third during a video meeting. Practice points were divided into prevention, assessment, diagnosis, and management of lymphoedema in LMIC.

Results: Of 16 participants invited, 10 members completed stage 1 of the NGT (ideas generation), of whom six contributed to stages 2 (round-robin) and 3 (clarification). All those who completed stage 1 also completed stages 4 (refinement) and 5 (verification). Practice points unanimously agreed on included Complex Decongestive Therapy (CDT) and good skin care, with management to be determined by lymphoedema stage. For podoconiosis-endemic areas, the use of socks and shoes was identified as very important in the prevention of non-filarial lymphoedema and other lymphoedema-causing conditions. Participants indicated that diagnosing lymphoedema using the lymphoscintigraphy and Indocyanine green (ICG) fluorescent lymphography was not possible due to unavailability and cost in LMIC. Surgical procedures for lymphoedema management were unanimously eliminated due to the unavailability of technology, limited workforce, and expensive cost in LMIC.

Conclusion: The consensus-based practice points generated by this project provide healthcare workers with guidance on caring for people with lymphoedema in LMIC. Further development of workforce capacity is needed.

lymphoedema

care

guidelines

Nominal Group Technique

low- and middle-income countries.

Lymphoedema is a chronic and debilitating condition, often referred to as the “forgotten complication” because it can be mistaken for oedema, venous insufficiency or heart disease [1–3]. Globally, over 200 million people are affected by lymphoedema [4], the majority of whom live in low- and middle-income countries (LMIC). The condition impacts negatively on quality of life, interferes with activities of daily living and ability to work, and is traumatic for the person affected and their family [5, 6]. In many cases, lymphoedema alters the individual’s “sense of identity” and reduces one’s ability to participate in social events [6].

Compared to people in high-income countries (HIC), those living in LMIC are often diagnosed at a later stage and with more advanced forms of lymphoedema. They also have fewer treatment options, which increases their risk of developing complications and poorer health [7]. Unlike in HIC where cancer treatment is the major cause of lymphoedema, the most common cause of lymphoedema in LMIC is infectious lymphatic filariasis, while others suffer from the “swollen limb syndrome” [8]. The World Health Organisation (WHO) suggests there has been a rapid reduction (74%) in lymphatic filariasis since the role out of the ‘Global Programme to Eliminate Lymphatic Filariasis’ in 2000, limiting the impact of the disease in most areas [8, 9]. However, lymphoedema from other causes such as cancer, podoconiosis, idiopathy and trauma remains a major problem.

A recent systematic review[10] identified 10 lymphoedema guidelines for HIC but only one for LMIC: the WHO Wound and Lymphoedema Management[11], which focuses exclusively on lymphoedema caused by infectious filariasis and wounds, and has very limited content on diagnosis and assessment. Unfortunately, recommendations in HIC guidelines are not always transferable to LMIC, especially when access to specialist services is limited and healthcare workers lack high levels of expertise to provide optimal care [12]. In many LMIC, awareness of lymphoedema by the general public is limited and those affected are often stigmatised due to cultural beliefs [13]. Finally, financial constraints for many people in LMIC negatively affects their capacity to pay for medical supplies and professional support.

In the absence of robust evidence to guide the prevention, identification and management of lymphoedema in LMIC, ‘practice points’ can fill this gap and are often highly valued by health workers. Practice points are sets of recommendations that are developed through expert opinion when evidence is insufficient or outside the scope of systematic reviews [14]. The current research aimed to develop practice points for healthcare workers that optimise lymphoedema care in LMIC.

Design

A nominal group technique (NGT) using a formal consensus process, was adopted as an interpretative method for generating priorities from stakeholders interactive discussions [15, 16].

Participants and setting

To contribute participants were required to be: a) an expert on the diagnosis, assessment and/or management of lymphoedema from any cause, as denoted by authorship on a relevant journal article and/or b) a health professional or other person who had been involved in providing care for people with lymphoedema in a LMIC in a paid or voluntary capacity.

Recruitment strategy

Participants were sampled using two non-probabilistic methods: purposive and snowballing methods. Initial approach was via email invitation to authors of relevant journal articles identified by a systematic review of lymphoedema studies in LMIC [17], personal and professional networks, and through organizations with an interest in lymphoedema care in LMIC, as well as to participants of previous research on lymphoedema care in LMIC [18].

Email invitations to individuals were followed up with a reminder after a week, to ensure that people had ample opportunity to respond without unduly ‘pestering’ them. A non-response to the follow up email was considered a decline to participate [19].

Participants who completed the first stage on the idea generation survey via email were invited to participate in stages 2 to 5.

Data collection took place between December 2021 and May 2022.

Data collection

The NGT method was used to identify which key topic areas should be prioritised for simple and practical guidance on lymphoedema care for clinicians in LMIC. This work followed an adapted version of McMillan, King [20] five NGT stages, as summarised below.

1. Stage 1 (silent generation) is an idea generation stage. Participants were emailed a list of topic areas from the HIC guidelines asking them to individually reflect on which ones they think are most important and feasible for LMIC as well as to add any further ideas they have for such guidance. Each participant returned their ideas to the first investigator (ET) for him to identify areas of agreement and disagreement.

2. In a ‘round robin’ stage, participants attending a meeting were asked to explain the rationale for their ‘top choice’ for inclusion in the clinician guidance. If a participant’s top choice had already been put forward by someone else, (s)he was invited to choose another. The round robin continued until everyone’s choices were exhausted. No group discussion or commentary by the facilitator occurred at this stage. This stage and stage three were completed at a video meeting facilitated by the second author (TL), with notes taken by ET.

3. The next stage focused on clarification of ideas via group discussion, in which participants were asked to identify areas of overlap or synergy between the selected topics to create themes, ensuring the list was coherent and not repetitive. At this stage, participants could also agree to exclude or alter ideas, as well as generate new ideas.

4. In the fourth stage (refinement), the group choices from the list created at Stage 3 for each domain of the guidance document were sent via email to participants for verification. Participants were allowed to comment on the guidance document individually rather than as a group to ensure all participants’ opinions were captured. Where a practice point was suggested by a participant that was additional to those in the HIC guidelines, a Medline database search was conducted to check the evidence available either in support or against the suggestion. Where evidence was considered favourable or absent, the suggestion was put forward for discussion and consensus.

Recommendations were graded based on the systems as reported by the International Lymphoedema Framework [21]. Levels of evidence for each recommendation were defined by the relevant guideline(s) from which it was sourced. All of the guidelines except two [22, 23] used the grading system described by the International Lymphoedema Framework: Grade A - clear research evidence obtained from meta-analysis or systematic review of randomized controlled trials; Grade B - limited supporting research evidence; and Grade C - experienced common sense judgement (consensus) [21].

5. In the final stage (verification), results from the fourth Stage were presented back to the group for discussion and consensus, again via email. Where a participant suggested a review, the new suggestion was made and returned via email to all participants for another round of verification until there were no more additional information. ET synthesised all the feedbacks and identified areas of agreement and consensus and presented the practice points for lymphoedema prevention, assessment, diagnosis and management.

Analysis

Analysis of Stage 1 data involved simple counts of the number of participants identifying each topic as important and/or feasible. Analysis for Stages 3 and 5 used a simple qualitative approach, with themes inductively derived from participant discussion and verified with participants then modified according to feedback. At the end of Stage 4, descriptive statistics of median and range were used to indicate consensus among participants for each topic based on survey results [24, 25].

Ethical Considerations

Projects building consensus among experts are not required to obtain formal ethical approval according to policy at the University of Technology Sydney provided participants agree to be identified on reports. It was made clear during recruitment that participation was voluntary, and that completion of Stage 1 and/or attendance at the meeting for Stages 2 to 5 would be taken as evidence for consent. Participation included an understanding that names would be published, in accordance with common practice for consensus studies [26]. However, each participant’s responses to the survey remained anonymous. Participants also reserved the right to discontinue participation at any time. These terms were repeated at commencement of the meeting.

Out of the 16 participants invited, 10 completed Stage 1 (idea generation), and six attended the meeting to complete Stages 2 (round-robin) and 3 (clarification) and reach a consensus on contents for inclusion in the practice points. Participants were representatives from the disciplines of physiotherapy (n = 4), nursing (n = 1), and medicine (n = 1). All participants had more than 10 years of experience of providing lymphoedema care in LMIC. All experts also had advanced education (masters or doctorate), and were affiliated to either a higher academic, research and/or health institution. The experts had expertise in providing care in the following LMIC; Bangladesh, Brazil, Cooks Islands, Egypt, Ethiopia, Ghana, Haiti, India, Ivory Coast, Papua New Guinea, and the Solomon Islands.

Consensus

Consensus was reached on 25 of the 33 items included in stages 2–5 of the nominal group technique. The items that generated the highest level of consensus regarding feasibility spanned lymphoedema prevention, diagnosis and non-surgical management (Refer to Table 1 for outcome of Stage 1 of the NGT process), while no consensus was achieved for the surgical management of lymphoedema in LMIC. There were very low levels of support for promoting preventative, diagnostic or surgical interventions that required specialist equipment, specialist capabilities or were costly. Therefore, diagnostic techniques such as indocyanine green, bioimpedance spectroscopy and lymphoscintigraphy along with the surgical procedures recommended in HIC, such as liposuction, lymphovenous anastomosis and vascularised lymph node transfer were all excluded from the lymphoedema practice points for LMIC.

Table 1

Outcome of Stage 1 of the NGT process
Key Topic Area	Important/feasible for LMIC guidance	Overall synthesis
	Yes (N = 10)	If not, why not	Main considerations
A) Lymphoedema Prevention
1. Lymphoedema education	10	None	Significantly important, using simple language that is presented with more visual illustrations, including self-hygiene as part of the care.
2. Promoting self-management	10	None	Significantly important, and consider partner and family if appropriate.
3. Morbidity control through prevention and treatment	10	None	Significantly important, and should include “early detection”.
B) Lymphoedema Diagnosis
4. Circumferential measurement using tape measure	10	None	Requires minimal technique; readily available and quick to use. Patients/families can be taught to measure their arms in regular intervals for monitoring. However, a standard and consistent method need to be used.
5. Volumetric measurement	8	Not widely available, and it poses the risk of cross-infection if infection control measures are not strictly followed; consider availability of portable water; too messy with water usage, application for calculating volume measure recommended.	Probably the most available method of measurement in some places.
6. Bioimpedance spectroscopy	6	Not readily available; probably least available tool to diagnose in LMIC due to cost and lack of training.	Increasingly available in some low- and middle-income countries.
7. Indocyanine green lymphangiography	5	Unavailable and costly; not necessary except in elective surgery; least available due to cost and lack of training.	If available, will be very helpful to appreciate individual flow patterns; necessary to consider availability of human resource and cost.
8. Lymphoscintigraphy	3	Unavailable and cost; unavailability of human resource; most patients cannot afford it; lack of expertise.	Might not be available
9. Magnetic resonance lymphangiography	3	Unavailable and costly; least available tool to diagnose lymphoedema in LMIC due to cost and lack of training	-
C) Non-surgical management of Lymphoedema
10. Skin care	10	-	Simple and basic. However, materials and tools need to be available.
11. Compressional therapy (including garmenting)	10	Consider high cost of bandages and non-availability of garments	Need deep training on distorted real size models, to learn bandaging huge oedematous areas in the intensive phase of treatment. Need in-depth clinical guidelines to choose between different compression tools in the conservative phase of treatment; can use local materials
12. Exercise prescription	10	-	Very necessary, considering various stages of condition. It should include pelvic floor and core exercises as routine for people with genital lymphoedema.
13. Psychosocial rehabilitation - Family support systems	10	Sometimes, it adds financial burden on the patients and where necessary, may be eliminated	Very critical and important in low- and middle-income countries; it should be provided by informal caregivers. Also, required in destigmatising the disease.
14. Quality of life improvement strategies	10	If it adds financial burden on the patient, it could be cancelled	It requires quality assessment tools
15. Cellulitis management	10	-	Important to identify and intervene early. Patients were often told to contact the treating oncology settings for management by the first contact healthcare practitioner. Therefore, information related to this condition must be explained to the lymphoedema patients; very important due to high bacterial load of the skin & bad hygiene, and could benefit from new evidence (compression therapy management).
16. Weight management techniques/ advice	10	-	It should include the importance of healthy diet and should be included in education. Advice on obesity needs to be based on the criteria specific to the intended population on which the intervention is initiated. Normal BMI: 18.0-22.9 kg/m2, Overweight: 23.0-24.9 kg/m2, Obesity: >25 kg/m2
17. Referral to appropriate specialists where indicated	10	Absence of specialists; consider availability as most areas have limited specialists	Often the referral is unnecessarily delayed due to a range of reasons. A guideline with a specific referral pattern may be helpful.
18. Complete Decongestive Therapy - Manual lymphatic drainage	9	Lack of evidence	Therapists require training
19. Antimicrobial therapy	8	It is not routinely used in practice. For low- and middle-income countries, it is important to consider cost. Very necessary to consider availability. Some places must be have. For instance, penicillin is readily available for patients in Uganda	Quite important in controlling bacterial infections in people with infected wounds and might not be in lymphoedema per se.
20. Teaching of firm self-massage techniques	8	Cost in training and danger if not done appropriately	-
21. Diuretics	6	Should only be used if required	Only if appropriate to use for example in reducing volume overload in cases with cardiac heart failure
22. Medical therapy - Benzopyrones	3	Not enough good quality evidence for effectiveness; Not widely used; not routinely used in practice. It is hepatoxic and lacks quality evidence and therefore should not be recommended	-
D) Surgical management of Lymphoedema
23. Liposuction	1	Not available in LMIC; and should be reserved for complex cases. It has poor quality of evidence and may be costly.	Consider availability of human resources (plastic surgeons) and cost; Surgical procedures should only be reserved for complex or advanced cases. Do not suggest debulking. Procedures should only be done by specially trained providers and risks are high. Not readily available even in many HIC and it appears to only work in carefully selected patients
24. Vascularised lymph node transfer	0	Not available in LMIC, absence and inexperienced specialists; usually patients are at stages 2–3; microsurgeries are not applicable; poor quality evidence of effectiveness; high cost; and only works in carefully selected patients.	Not readily available even in many HIC and it appears to only work in carefully selected patients; Surgeons may not be skilled enough and procedure may be too expensive.
25. Lymphaticovenous anastomosis	0	Not available in LMIC; not indicated to all patients; limited and inexperienced specialists; poor quality evidence of effectiveness; and not indicated to patients presenting in stages 2–3; and microsurgeries are not applicable.	Not readily available even in many HIC and it appears to works in carefully selected patients; Surgeons may not be skilled enough and procedure may be too expensive.

PLEASE INSERT Table 1 HERE

Across prevention, diagnosis, assessment and management, 18 practice points were recommended, each with accompanying key areas for the simple, practical guidance, as summarised below and detailed in Table 2.

Table 2

Practice Points: Lymphoedema Prevention, Diagnosis, Non-Surgical and Surgical Management in LMIC
Number	Recommendation or Practice Point
A) Prevention
i) Awareness creation
1	Effective identification of people at risk of developing lymphoedema through creating awareness about causes of lymphoedema and associated risks factors, implementation of preventive strategies, as well as self-monitoring. (GRADE C), ILF [21] ONS [22] ISL [7]
2	Patient and carers should have early active involvement in the management of lymphoedema including appropriate information on skin care. (GRADE B), ILF [21]
Practice Point
a	Raise awareness regarding lymphoedema and the risks posed by surgery and severe infections; and promoting diligent skin care and optimal treatment of all comorbid conditions (e.g., hypertension, diabetes, obesity, and/or heart conditions). (Consensus through NGT Meeting).
ii) Multidisciplinary team approach
3	Lymphoedema care requires a multidisciplinary team approach requiring healthcare workers including: general practitioners (GPs), surgeons, physicians, physiotherapists, occupational therapists, nurses, dietitians, podiatrists, counsellors and service managers, among others. (Consensus) ACI[39] ILF [21]
Practice Point
b	Ensure healthcare workers are aware of any available specialist services and the need for a multidisciplinary team (MDT) approach to lymphoedema care. (Consensus through NGT Meeting).
iii) Promoting skin care
4	Individual with lymphoedema should be provided with skin care education as well as proper maintenance of appropriate skin care practices. (Consensus) ACI [39]
5	Minimising the risk of cellulitis/erysipelas by treating any condition associated with lymphoedema. (GRADE B), ILF [21]
Practice Point
c	Promote diligent skin care and treating other comorbid conditions like hypertension, diabetes, obesity, or heart conditions. (Consensus through NGT Meeting).
iv) Protective clothes
6	To reduce the risk of deterioration or lymphoedema, people with lymphoedema should wear comfortable, supportive shoes, and wear prophylactic compression sleeves where indicated. (Consensus) ILF [21]
d	Promoting the use of socks and shoes where there is a risk of podoconiosis. (Consensus through NGT)
7	An accurate assessment including filarial antigen test is recommended to detect infection by Wuchereria bancrofti mainly for persons living or have visited lymphatic filariasis endemic area. (GRADE C) ILF [21]
Practice Point
e	Initiate laboratory tests for lymphatic filariasis. (Consensus through NGT)
vi) Mosquito control
8	Controlling the vector, mosquito will prevent the risk of lymphatic filariasis infection transmission. Mosquito nets should be used in lymphatic filalriasis endemic areas, and caregivers and people with lymphoedema should be informed on mosquito control strategies. (GRADE C) ILF [21]
Practice Point
f	Promote mosquito control to prevent filarial lymphoedema. (Consensus through NGT)
B) Assessment
i) Assess signs and symptoms
9	Assessing for changes in the skin. (Consensus, ILF [7]) (Grade A), IUP [40]
10	Assessing for signs and symptoms including heaviness, swelling, tight clothing, and pitting. (Consensus) APTA [41]
11	Identifying any other health conditions that might affect or be affected by lymphoedema. (Consensus) ILF [21]
Practice Point
g	Assessing changes in the skin, including dryness, pigmentation, agility, warmth, cellulitis, scars, chronic wound and ulcers, deepened skin folds, skin breakdown and Stemmer sign; refer for comprehensive assessment by trained staff where available. (Consensus through NGT)
ii) Objective assessment
12	Establish a baseline measurement through volume measurement, and take circumferential measurement and compare affected limb with unaffected. (Grade B) IUA [31]; (Consensus, ACI [39] and ISL [7])
13	Perform Stemmer’s test. Stemmer’s sign is positive when a thickened skin fold at the dorsum or toe cannot be lifted up or is difficult to lift. (Consensus, CREST [42] and ILF [21])
Practice Point
h	Taking circumferential measurements of affected limb and comparing with the unaffected using a tape measure (checking for fitting clothes, and changes in limb size) and/or volume measurement. (Consensus through NGT)
iii) 3D Scanning
14	Using 3D scanning technology
15	Using mobile applications such as the LymhaTech and scan photos via WhatsApp[43] and other appropriate applications. There is no effective method for measuring oedema affecting the head and neck, breast, trunk or genitalia. It is recommended to take a digital photography to record and monitor facial and genital lymphoedema. (Consensus) ILF [21]
Practice Point
i	Assessment of lymphoedema using 3D Scanning devices, as well as scanning photos using WhatsApp and other appropriate applications. (Consensus through NGT)
iv) Telemedicine
16	Telemedicine and telehealth should be used in areas of limited resources to improve local provider’s capacity. (Consensus). ACI [39]
Practice Point
j	Practicing telemedicine using computer applications using emails, and WhatsApp. (Consensus through NGT)
v) Staging
17	Indicate the stage of condition using the ISL classification. Note: o Stage 0 - A subclinical state where swelling is not evident despite impaired lymph transport. This stage may exist for months or years before oedema becomes evident. o Stage 1 - This represents early onset of the condition where there is accumulation of tissue fluid that subsides with limb elevation. The oedema may be pitting at this stage. o Stage 2 - Persistent pitting oedema is manifest and limb elevation alone does not reduce swelling. o Late Stage 2 - Persistent swelling, there may or may not be pitting as tissue fibrosis is more evident. o Stage 3 - The tissue is hard (fibrotic) and pitting oedema may be absent. Skin changes such as thickening, hyperpigmentation, increased skin folds, fat deposits and warty over growths develop. The most severe changes are also known as elephantiasis. (Consensus) ISL [7]
Practice Point
k	Indicating the stage of the disease condition in accordance with the ISL staging. (Consensus through NGT)
vi) Questionnaires
18	Assessing the impact of lymphoedema on daily lives of people with lymphoedema using questionnaires. (GRADE C) ILF [21]
Practice Point
l	Using questionnaires to understand the impact of lymphoedema on person’s daily life. (Consensus through NGT)
C) Diagnosis
i) History taking and physical examination
19	Begin diagnosis with a Doppler scan. (Consensus)ACI [39]
20	Take history and perform physical examination; ruling out secondary conditions or vascular problems using Doppler and magnetic resonance imaging (MRI). (GRADE A) IUA [31]
21	Use Bioimpedance spectroscopy; and make diagnosis of any arterial problems. (Consensus) ISL [7]; (Level II) QH [44]
22	Perform immunochromatographic card test (ICT) or indocyanine green (ICG) to rule out lymphatic filariasis in people with podoconiosis. (Consensus through NGT)
Practice Point
m	Compare records of tape measurement, physical examinations, Doppler scan, photos in both unilateral and bilateral lymphoedema, where necessary compare affected to unaffected limbs coupled with subjective assessment to make diagnosis. (Consensus through NGT)
n	For podoconiosis, request ICT to rule out filariasis or Indocyanine green (ICG) if available. (Consensus through NGT)
D) Management
i) Key management techniques
23	Lymphoedema management should be based on the severity and extent of the condition. At subclinical stage (stage 0), management should involve: a) weight management, diet and skin care; b) individualized aerobic exercise programs, and specific treatment regimen; (GRADE A) APTA [37] and c) prescription of other treatment including education, self-massage, and compression garments. (GRADE C), APTA [37]; IUP [40]; JLSG [38]
24	Management at early onset (stage 1) includes: a) Where there are early signs and/or symptoms of lymphoedema, recommend compression garment and instruct on exercise regimen as well as provide education as first-line treatment. (GRADE A), APTA [37] b) Elevation, specialised exercise, appropriate compression sleeve to wear for at least 12 hours per day where indicated. Knowledge gap, ONS [22]; Level 2b, BPG [23] c) Provision of ongoing education for care, managing pre-morbid conditions, and weight management strategies. (GRADE C) JLSG [38]
15	Where there is persistent oedema (stage 2 and above), management should include: a) Teaching self-bandaging to patient, and prescribe complex decongestive therapy (including compressive therapy and bandaging which require support and follow-up); (Grade B), IUP[40]; (Graded conditional), ONS [22]; (Grade A), APTA [37]; and (Level 2a),BPG [23] b) prescribing cuff/muscle pumps where available and manual lymphatic drainage; (Grade B), ILF [21]; (Grade C), IUP [40] and c) for an optimal long-term reduction in volume, monitoring volume changes and providing frequent follow-up care. (GRADE C), APTA [37]
Practice Point
o	Meticulous skin care, exercise, modified lymphatic massage, manual lymphatic drainage, and compression therapy (wraps) based on the stage of the condition. (Consensus through NGT)
p	Performing a functional, aggressive physiotherapy to improve hand/finger movements for people with severe fibrosis. (Consensus through NGT)
q	Ensuring foot hygiene and skin care at all stages of lymphoedema. (Consensus through NGT)
r	Include pelvic floor exercises for people living with genital lymphoedema. (Consensus through NGT)
ACI: Agency for Clinical Innovation; APTA: American Physical Therapy Association; BPG: Best Practice Guideline; CREST: Clinical Resource Efficiency Support
Team; DLG: Dutch Lymphoedema Guideline; ISL: International Society for Lymphology; IUA: International Union of Angiology; IUP: International Union of Phlebology; JLSG: The Japan Lymphoedema Study Group; ILF: Lymphoedema Framework; NGT: Nominal Group Technique; ONS: The Oncology Nursing Society; QH: Queensland Health.

The guidance focused on:

1. Lymphoedema Prevention

Five lymphoedema prevention practice points were generated, with most focused on raising lymphoedema awareness among healthcare workers (Grade C), and ensuring they are aware of the available specialist services and the need for a multidisciplinary team approach to lymphoedema care (Grade B) [21]. Other preventive strategies included: 1) promoting meticulous skin care, including the routine use of socks and shoes, especially where there is a risk of podoconiosis and other lymphoedema-causing conditions; 2)healthcare workers initiating laboratory tests for people living in endemic areas to enable early diagnosis of lymphatic filariasis (Grade C) [21]. Participants also identified the need to ensure mosquito control to prevent filarial lymphoedema in LMIC [27].

2. Lymphoedema assessment

Six practice points were developed under lymphoedema assessment. These were based on: 1) assessment of signs and symptoms of lymphoedema including undertaking appropriate test such as Stemmer’s or pitting tests (Grade A) [28, 29]; 2) examining the changes of the skin; 3) taking measurements of involved limbs and comparing with unaffected limbs; 4) taking photos for records; 5) using encrypted email services and WhatsApp application [30] and other computer applications to support assessment through telemedicine; and 6) indicating the stage of the condition [30–32]. Participants also indicated that lymphoedema questionnaires such as the Quality-of-Life Measure for Limb Lymphoedema (LYMQOL) [33] and Lymphoedema Functioning, Disability and Health questionnaire (LYMPH-ICF) [34] should be used to understand the impact of the condition on the daily lives of people living with lymphoedema in LMIC.

3. Diagnosis

Two practice points were developed under lymphoedema diagnosis, related to: 1) comparing records of tape measurements, physical examinations, Doppler scans, photos that were taken comparing unilateral and bilateral lymphoedema coupled with subjective assessment to make a lymphoedema diagnosis (Grade A) [31]; and 2) requesting for an immunochromatographic card test (ICT) to rule out filariasis in people with podoconiosis and using the near-infrared fluorescence imaging (NIRFI) [35] and indocyanine green (ICG) lymphography if available to make diagnosis of any secondary lymphoedema.

4. Management

Four practice points were developed for lymphoedema management based on the evidence from the guidelines. These were as follows: 1) ensuring meticulous skin care, exercise [36], modified lymphatic massage, and compression therapy (wraps) based on the stage and severity of the condition (Grade A) [37, 38]; 2) performing a functional, aggressive physiotherapy to improve hand/finger movements for people with severe fibrosis (Grade A) [37]; 3) ensuring foot hygiene and skin care at all stages of lymphoedema; and 4) involving pelvic floor exercises for people living with genital lymphoedema. Where available, a complete decongestive therapy is recommended for management of lymphoedema (Grade A) [23].

PLEASE INSERT Table 2 HERE

This consensus process has generated 18 feasible and important practice points to support better lymphoedema care in LMIC. The practice points emphasise the need for accessible and affordable prevention, early diagnosis, and non-surgical management for every person living in a LMIC to prevent disability and unnecessary suffering.

Practice points for prevention focused on increasing community awareness and education regarding lymphoedema, and meticulous skin care. As detailed in the Ottawa Charter, it seems likely that three main health promotion strategies are required to prevent lymphoedema in LMIC: 1) advocacy to create the essential conditions to prevent lymphoedema; 2) enabling all people to achieve their full health potential; and 3) mediating between the different interests in society in the pursuit of health [45, 46]. Positive public health policies are needed to increase community awareness of lymphoedema including strengthening community action against lymphoedema [46]. Combatting lymphoedema related stigma requires the creation of an environment free from all forms of prejudice [46].

According to Stout et al [12], increased awareness about lymphoedema requires a concerted efforts from the WHO and International Lymphoedema Framework, whose efforts are heavily involved in HIC. The approach as suggested should be streamlining healthcare worker educational initiatives in order to increase their lymphedema knowledge and capabilities to prevent and manage this condition [12]. It is not surprising that participants stressed the need for creating awareness of the condition among healthcare workers in LMIC. Early detection of lymphoedema is critical as it prevents complications and avoids life-long swelling. This could only be possible in LMIC when healthcare workers have the required skills and training for early identification of the condition. It is recommended that healthcare workers be trained on risk reduction education, as well as standardised methods of lymphoedema diagnosis.

Individuals need to be provided with the skills and resources required to implement simple prevention interventions like meticulous skin care, including hand-hygiene and wearing shoes. A recent meta-analysis of lymphoedema interventional studies found that education focused on hygiene-based techniques in lymphatic filariasis-endemic areas prevented the transmission of lymphatic filariasis through proper hand washing [47]. Additionally, good sanitation and proper water management decreases the breeding environments for mosquitoes [47]. For the above actions to be effective, the health systems and services of LMIC require a re-orientation – an effort which should be welcomed by all levels of care (individual, community and health service).

According to Nowicki and Siviour [48], complex decongestive therapy (CDT), which is also known as complete decongestive physiotherapy (CDP) is the key technique in ensuring proper skin care in lymphoedema. CDT comprises of two main phases, the manual mobilising and draining of fluid (intensive or manual lymph drainage phase) and the maintenance phase (the compression therapy), which has an oedematous effect on the affected limb. Both phases of CDT aim to sanitise the skin and help in preventing opportunistic infections by increasing the function of lymph vessels [48]. Once fluid in the affected limbs decreases, skin integrity improves and fibrosclerotic indurations soften [49]. Coupled with the restoration of function in the affected limbs, the CDT procedure has a meticulous skin care component that ensures a well-moisturised, healthy, clean and intact skin.

Practice points for lymphoedema diagnostic techniques generated through our NGT involve comparing circumferential or limb volume measurement of affected and unaffected limbs in unilateral limb lymphoedema or undertaking a baseline measurement of the affected body part. While other diagnostic techniques such as lymphoscintigraphy and Indocyanine green (ICG) florescent lymphography are effective, their prohibitive costs and limited availability makes them unsuitable for use in most LMIC [50]. It is important to promote the less expensive and more straightforward lymphoedema diagnostic methods, such as the use of the volumetric measurement, circumferential measurement as well as palpation in identifying lymphoedema suitable for use in LMIC. Healthcare workers in LMIC should be taught appropriate ways of confirming if 10% of the affected limb is affected by lymphoedema (positive diagnosis) [51] so that they are able to accurately measure and interprete lymphoedema volume measurements.

Practice points generated for lymphoedema assessment include detailed subjective (history taking) and objective assessments. According to Svensson et al [52], lymphoedema assessment should involve performing pitting tests accompanied with detailed report of presenting signs and symptoms. Our study findings indicated that the assessment should focus on performing pitting test, Stemmer’s test and physical examination. Despite the bioimpedance spectroscopy is widely known for measuring total fluid volume, our findings indicate that it is expensive, and not readily available for lymphoedema assessment in LMIC. Another important finding of this study is staging of the lymphoedema. Participants indicated that for proper treatment outcomes, lymphoedema should be classified according to the stages as presented by the International Society of Lymphology [7]. Lymphoedema staging is vital for diagnosing and useful in implementing treatment interventions. A comparative study of the similarities and differences of lymphoedema between HIC and LMIC observed that healthcare workers in both countries are unaware of the disease classification system [12]. It is recommended that healthcare workers will put in efforts to understand the staging system and to implement it in the assessment and diagnosing of lymphoedema in LMIC to improve care for people living with lymphoedema.

In endemic areas of lymphatic filariasis, participants recommended that an ICT be performed. The ICT is a simple and fast method used in detecting Wuchereria bancrofti infections responsible for lymphoedema caused by lymphatic filariasis [53]. It is advised that, healthcare workers should request for ICT in cases of podoconiosis to rule out any infection of lymphatic filariasis and to aid early identification and treatment. A review of studies on non-filarial lymphoedema or podoconiosis in Africa indicated that a combination of both laboratory test and geochemical investigations are important in understanding the pathogenesis of the condition, and subsequently developing mechanisms to eradicate lymphoedema [54].

Our NGT agreed that lymphoedema management in LMIC requires a set of coordinated effort from the multidisciplinary team of healthcare workers. Main management techniques identified in this NGT include meticulous skin care, exercise, modified lymphatic massage, and compression therapy (wraps) based on the stage of the condition. These were not different from CDT, the key management strategy for lymphoedema [23]. The main difference in LMIC is that specialist skills may be limited, and some resources may not be available for its implementation. Based on this factor, experts of our NGT suggest the use of improvised materials such as the wraps and simple treatment modalities. Additionally, this NGT indicated that the management of lymphoedema should involve proper foot and skin hygiene, and wearing of appropriate foot wears in podoconiosis endemic areas. Where appropriate, lymphoedema treatment should include pelvic floor muscle exercises for people living with genital lymphoedema.

This work is the first to develop practice points for lymphoedema care in LMIC through an international consensus process. A limitation was accessing a larger number of healthcare workers providing lymphoedema care across a comprehensive range of LMIC. However, participants brought a diversity of experience across all global LMIC regions, and contributed a high level of expertise on lymphoedema care.

A further limitation was not including surgical management despite the role of surgical procedures in increasing limb volumes and quality of life improvements for lymphoedema management [55]. Our NGT concluded that procedures such as lymphaticovenular anastomosis or vascularised lymph node transfer [56] require well-trained surgeons and experienced healthcare workers which are inaccessible in LMIC due to a lack of suitable facilities or cost. It is hoped that, with the advance of technology and health systems globally, LMIC will be able to secure appropriate facilities and skills to help optimise conditions for surgery.

We appreciate that, lymphoedema management may differ from one LMIC to another and therefore, while some countries may be able to implement some of the modalities listed in this NGT, others might not be able due to human resource limitations. This notwithstanding, we provided very simple and practical practice points which should be feasible for lymphoedema care across all LMIC.

A number of lymphoedema clinical guidelines have been developed for implementation in HIC, with few applicable for care in LMIC. It is required that strategies which have been suggested for care in LMIC should be proven through randomised controlled trials. Healthcare implementers of LMIC should institute various research institutions to investigate and suggest culturally and resource appropriate techniques applicable in LMIC.

Lymphoedema education for healthcare workers could not be underestimated in the prevention of lymphoedema in LMIC. However, most healthcare workers lack appropriate knowledge and professional information required for lymphoedema management of people living with lymphoedema. It is appropriate that, in-service training and structured workshops with focus on increasing healthcare workers knowledge on lymphoedema be instituted to support care in LMIC.

Healthcare workers require increased knowledge and awareness on lymphoedema to improve care in LMIC. Eighteen practice points have been developed to optimise lymphoedema care in LMIC. Key lymphoedema care strategies identified in this NGT include meticulous skin care, exercise, modified lymphatic massage, and use of compression bandages or wraps. These practice points require dissemination to enhance lymphoedema care and improve clinical practice on management in LMIC.

Author Information

Affiliations

IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney, New South Wales, Australia

Eric Torgbenu, Tim Luckett, Mark A. Buhagiar, & Jane L. Phillips

Catholic Diocese of Parramatta, Parramatta, New South Wales, Australia

Mark A. Buhagiar

School of Nursing, Queensland University of Technology, Brisbane

Jane L. Phillips

Corresponding author

Correspondence to Eric Torgbenu

Ethics approval and consent to participate

Availability of data and materials

The datasets analyzed in the current study are available from the corresponding author on reasonable request.

Consent to publication

Not applicable

Competing interests

The authors declare that they have no competing interest.

Funding

This project was funded by the Translational Cancer Research Network (TCRN) PhD Scholarship Top- up award, supported by the Cancer Network NSW.

Authors’ Contributions

All authors contributed to manuscript writing, editing and final approval, including table design. E.T, T.L, M.B, and J.L.P conceived the study. E.T, T.L, M.B, and J.L.P facilitated recruitment. E.T, and T.L led the data collection. Data analysis was performed by E.T with consensus discussions with T.L, M.B, and J.L.P. All authors reviewed the draft manuscript and provided approval to the final manuscript.

Acknowledgement

The authors acknowledge the staff and students of IMPACCT, University of Technology Sydney for their immense support during Journal Club Meetings. The authors would also like to acknowledge all participants for their contributions to the development of the guidance.

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Developing practice points for healthcare workers to optimise lymphoedema care in low and middle-income countries: a nominal group technique

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Abstract

Background

Design

Methods

Participants and setting

Recruitment strategy

Data collection

Analysis

Ethical Considerations

Results

Consensus

1. Lymphoedema Prevention

2. Lymphoedema assessment

3. Diagnosis

4. Management

Discussion

Strengths And Limitations

Implications For Future Research

Conclusion

Declarations

Author Information

Affiliations

Corresponding author

Ethics approval and consent to participate

Availability of data and materials

Consent to publication

Competing interests

Funding

Authors’ Contributions

Acknowledgement

References

Status:

Journal Publication

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