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PERSPECTIVE PAPER

Physiotherapy Management Response for Patients With Lymphedema Amid the COVID-19 Pandemic in the State of Qatar: A Perspective Study

Sundrasekaran, Anita PT, CLT, MSc, Psychology1; Abdalla, Emad PT, LANA-CLT, CES2; Sobani, Sumaiya PT, CLT1; Shafi, Mohamed PT, CLT3; Al-Mudahka, Noora Rashed PT, MBA4

Author Information
doi: 10.1097/01.REO.0000000000000255
  • Open

Abstract

The outbreak of the novel coronavirus disease (COVID-19),1 caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2),2,3 in December 2019 subsequently turned into a pandemic with 25 637 695 cases worldwide.4 The Ministry of Public health (MOPH) in Qatar reported the first confirmed case on February 29, 2020,5 and there are a total of 118 778 confirmed cases at the time of writing this article.6

At the sole dedicated Department of Oncology & Lymphedema Physiotherapy in Qatar that is part of the National Center for Cancer Care and Research at Hamad Medical Corporation (HMC), we had to cope with the restrictions imposed by the MOPH7 and the international guidelines for infection prevention and control of spread8 to maintain the continuity of care for patients with cancer, who are uniquely vulnerable because of their susceptibility to infections as a consequence of systemic immunosuppression and chemotherapy, or during recovery from recent surgery.9 The majority of our patients have cancer-related lymphedema that occurs as a consequence of breast cancer and head and neck cancer surgical procedures or primary lymphedema, which has a huge effect on their health-related quality of life.10,11 Therefore, we had to quickly respond to the restrictions and evolve a management plan for implementation during the pandemic in order to ensure the continuity of care and to meet the needs of this specific population.

The challenges of suspending the face-to-face (F2F) consultation to reduce the risk of infection and transmission have intimidated not only patients but also health care providers because of the sudden disruption of the gold standard of care for lymphedema: complete decongestive therapy (CDT).12,13 This includes an initial decongestive phase necessitating numerous daily hands-on sessions and supply of essential compression bandages and garments that play a vital role in the subsequent self-care maintenance phase.14–18 In addition, the paucity of information in the literature to manage this specific population-based need in an unprecedented crisis led our team to formulate a response with the expert opinions and available literature.19–23,24

Lymphedema is an accumulation of extracellular fluid in the interstitial spaces that can be attributed to primary or secondary causes25,26 and has an estimated global incidence of 140 million to 250 million.27 In 2019, our department received a total of 526 new lymphedema cases. Lymphedema management often requires prolonged F2F treatment sessions, depending on the stage and phase of treatment, conferring immense physical and psychological burdens on the patients, their families, and caregivers.28,29

We restructured our existing guidelines for the management of patients with lymphedema that were customized for our patient population to address the disruption in the care regimens because of COVID-19–related restrictions. This first of a kind report is presented with an aim to describe our experience with modifying the physiotherapy management for lymphedema during the COVID-19 pandemic.

METHODS

At the Department of Oncology & Lymphedema Physiotherapy, National Center for Cancer Care and Research—HMC, the lymphedema physiotherapy management modulation was undertake in 4 phases: (1) an initial phase 0 for the development of a crisis operational plan; (2) a first phase of teleconsultation; (3) a second phase of virtual consultation; and (4) a third phase of F2F consultation, with strict adherence to the precautionary and COVID-19 safety guidelines issued by the hospital infection control team.8

Phase 0 (Crisis Operational Plan)

In the absence of any telerehabilitation services in the Department of Oncology & Lymphedema Physiotherapy before the COVID-19 pandemic, a crisis operational plan was initiated through several meetings held with certified lymphedema physiotherapists (CLTs) to design a pathway or guideline to help ease the suffering and allow for the continuity of care of a unique group of patients. These meetings conveyed the verbal feedback and inquiries communicated to the therapists by patients on treatment plans, garments, and bandaging issues. Symptom complaints were documented and included in group discussions, and the opinions, ideas, and feedback from the team led to the identification of the following patient- and therapist-related challenges.

Patient challenges:

  • - Sudden disruption of F2F sessions.
  • - Risk of transmission of infection in F2F sessions.
  • - Inability to access sufficient supplies (garments/bandages) for those on self-management regimens.
  • - Inability to self-manage physical impairments that affect activities of daily living (ADL) as well as the onset and exacerbation of edema, which increase the psychosocial burden.

Therapist challenges:

  • - Newly referred patients in the waiting list.
  • - Lack of F2F sessions for patients who are in need of regular hands-on therapy.
  • - Lack of other means, besides F2F sessions, of providing care for patients and the absence of prior experience in providing telerehabilitation.

A phased tri-stage plan was developed to address the aforementioned challenges through triaging. Patients were triaged by a CLT depending on their diagnosis, reason, and urgency of referral and phase of treatment as well as their communication language in the patient's electronic file. Our team identified the imperative need for a tool to bridge the gap of therapist-delivered F2F treatment to facilitate patient self-management through a home program that was specifically developed for lymphedema. Furthermore, there was a need to accelerate the creation of online education and self-management resources, including simplified explanatory videos, for the core components of the lymphedema self-management techniques that could be added to the existing educational handouts that were developed by the department to ensure the delivery of correct information. Videos for self-administered manual lymphatic drainage (MLD) for the upper limbs, lower limbs, head and neck, compression bandaging, decongestive exercises, and self-measurement for the upper and lower limbs, with instructions in English, Arabic, and Hindi, were created.

Evaluation at each phase was based on the department's existing lymphedema assessment form. The plan required the documentation of demographic data, including age, sex, nationality, diagnosis, and history of COVID-19 testing, for each patient in each phase of the consultation. Subjective measurement of pain using the Numeric Rating pain Scale and assessment of limb range of motion (ROM) in which mildly limited lacks up to one-third of normal range, moderately limited lacks one-half to three-fourths of normal range, and severely limited lacks up to two-thirds or more of normal range were conducted and recorded. The objective measurement of limb volume was determined through an interactive input and output software system (Interactive I & O), wherein the circumferential measurements that were manually measured using a measuring tape were entered digitally during F2F consultations and the software calculated the limb volume. This facilitated the evaluation of the severity of lymphedema and the volume difference. Patient feedback on the satisfaction and clarity of online educational and self-management resources in the teleconsultation and virtual phase was recorded on the basis of questions that were directly asked by the therapist during the follow-up appointments. Data were analyzed manually for descriptive statistics using Microsoft Excel.

Phase 1: Teleconsultation

In line with the MOPH approach to help curb the rapid spread of the disease by enhancing remote access to health care, we commenced teleconsultations during the first phase of the modified care plan. The patients in the initial phase were patients with breast cancer in the preoperative, early postoperative, and follow-up stages. Patients with lymphedema who were being managed in the department before the pandemic were on self-management regimens. The remote consultation coordinator contacted these patients 1 day prior to the appointment to inform them of the schedule. Evaluations in this phase were done telephonically and were self-reported by the patient. Therapists guided patients through questions on their lymphedema history, lymphedema signs and symptoms, signs of infection, skin condition, pain, ROM limitation, and muscle power. The plan of care was discussed with patients, and the requisite self-management videos and details of exercises needed were conveyed through channels that were approved by HMC's Department of Communication. Follow-up phone calls were made after 1, 2, and 4 weeks. The initial consultation lasted for up to 60 minutes, and the follow-up calls extended up to 30 minutes.

The challenges identified in the teleconsultation phase included the lack of inspection of the skin and swelling, which is a major concern in lymphedema management, and the palpatory examination of patients with complaints pertaining to and suspected of axillary cording in secondary lymphedema.

Additional challenges were as follows:

  • - Sudden onset of swelling in a patient in a latent stage of lymphedema/early postoperative stage.
  • - Severe pain or ROM restriction in the affected area leading to physical impairment and disruption of ADL.
  • - Need to change the compression garment, which otherwise could lead to the worsening of the patient's condition.
  • - Patient unavailability/conflict in appointment even after prior information of the schedule.

These identified challenges led to the development of virtual or F2F consultations for these patients.

Phase 2: Virtual Consultation

Through CLT-driven triage, we prioritized the care of patients with head and neck cancer–related lymphedema and breast cancer–related lymphedema who were identified through teleconsultations in phase 1 but were considered to be at high risk and were unable to attend F2F consultations. To facilitate virtual consultations, licensing and equipment approvals were needed in compliance with the official communication issued by the MOPH. This took some time and required the training of CLTs in the use of the provided application (VSee Clinic) to ensure the best outcome. Changes had to be made to the Outpatient's Routine Workflow process (Figure 1) to cope with the newly introduced consultation method. Exclusive rooms in the outpatient department setting were allotted to maintain the comfort and privacy of the patients.

F1
Fig. 1.:
Virtual consultation (phase 2) workflow.

First, the treating physician initiates a physiotherapy referral, which is then triaged by the triaging coordinator to assess the need for a virtual consultation and to identify the preferred language. The appointment clerk then schedules the appointment after obtaining the patient's verbal consent via phone. The virtual application's link is sent through the Corporation's messaging system. The process of downloading the application, connecting it to the virtual consultation waiting room, concerns with Internet connectivity, and the preferred device for the patient are discussed in detail by the remote consultation coordinator prior to the appointment. The assigned CLT calls and virtually connects to patients through the VSee Clinic application for the real-time interactive evaluation, which includes observational assessment of lymphedema, ROM limitation, muscle power, and limb size. On the basis of the evaluation, a care plan is defined and a follow-up appointment is initiated and scheduled after 1, 2, and 4 weeks in compliance with the department's lymphedema care guidelines.

The challenges in virtual consultations were as follows:

  • - Delay in the appointment time/increased waiting time due to technical difficulties, Internet connectivity problems, and low camera clarity.
  • - Older patients needed help in operating the application, which mandated the presence of family members or caregivers during the session.
  • - Some patients were uncomfortable exposing their affected area through a videoconference despite the preobtained consent and the high security requirements of the application.
  • - Inability to palpate the patient's skin condition, extent of fibrosis, and measurement of limb volume.

Phase 3: F2F Consultation

Following the easing of restrictions by the MOPH,30 F2F consultations became feasible with strict precautionary and safety measures. Patients identified for inclusion in this phase mainly included those with primary and secondary lower-limb lymphedema who were newly referred to the department and required a detailed inspection and palpation, which is a part of the evaluation, and the application of CDT, as well as the patients identified in phases 1 and 2 who could not be effectively managed through tele- or virtual consultations. Moreover, patients requiring a change of the compression garment or a new ready-to-wear garment to control new-onset lymphedema were included in this phase.

A triage screening was done to ensure that the patients were free of COVID-19 and did not fall under the high-risk category. When scheduling the appointment, verbal consent was obtained telephonically from the patient to visit the department after fully explaining the risks and benefits involved and the precautionary and safety measures that were to be taken by the patient. This was followed by a physical triaging at the time of each appointment in the department by using an updated COVID-19 questionnaire and temperature screening. The precautionary and safety measures included mandatory use of mask and gloves for the patient and the use of personal protective equipment (surgical mask, gloves, and a gown) by the CLT at the time of contact. The number of caretakers was restricted to 1, and a window period of 30 minutes for disinfecting the area after each patient visit was included. A detailed evaluation of lymphedema, ROM restriction, muscle power, and volume measurement was performed using Interactive I & O. The number of therapy sessions, including MLD and compression bandaging, was reduced and compensated through the use of online videos of self-MLD and bandaging. The primary caregiver or the patient was motivated and encouraged to practice self-MLD and compression bandaging at home from day 1, which facilitated early learning and teaching. In addition, therapy sessions began on the same day as the evaluation.

Patients in the mild lymphedema category were recommended 1 to 2 visits, which included an evaluation, therapy plan, education, and the provision of online educational videos (for self-MLD, decongestive exercises, etc) and a ready-to-wear compression garment. Patients in the moderate and severe lymphedema category additionally received limited contact sessions over 1 week of daily visits for MLD and bandaging and were placed on telephonic follow-up after 2 weeks. These patients were contacted for F2F reassessment after 1, 3, and 6 months (Figure 2). The usual course of care recommended daily hands-on sessions for a duration of 3 to 8 weeks, depending on the clinical severity in accordance with the department's lymphedema guidelines.

F2
Fig. 2.:
Face-to-face consultation (phase 3) workflow. LE indicate lymphedema; MLD, manual lymphatic drainage.

The limitations in this phase included the fact that:

  • - Elderly patients (60 years and older) could not be brought to the department due to the prevailing restrictions.
  • - A limited number of contact sessions with only one caretaker were permitted by the hospital.
  • - There was limited time for teaching self-management of lymphedema to the patient.

RESULTS

From mid-March to mid-July 2020, a total of 160 patients and 414 consultations were included in the 3 phases of telephone, virtual, and F2F consultations (Figure 3). Table 1 presents the demographic data across the 3 phases, with the proportion of female patients being higher than that of males. The mean age of the patients in the teleconsultation, virtual, and F2F phases was 48.46 ± 11.83, 53.8 ± 2.81, and 46.01 ± 8.98 years, respectively. Among the total number of patients, 43.2% underwent COVID-19 testing and 3.1% tested positive; those who tested positive underwent the consultations during their COVID-19 recovery phase.

F3
Fig. 3.:
Overall outpatient activity.
TABLE 1 - Demographic Data Across the 3 Consultation Phases
Teleconsultation Virtual Consultation Face-to-Face Consultation
Patients, n (%) 86 (53.7) 20 (12.5) 54 (33.8)
Nationality, n (%)
Qataris 20 (23.2) 5 (25) 22 (40.7)
Non-Qataris 66 (76.8) 15 (75) 32 (59.3)
Gender, n (%)
Male 1 (1.2) 4 (20) 8 (14.8)
Female 85 (98.8) 16 (80) 46 (85.2)
Age, n (%)
21-30 y 0 0 5 (9.3)
31-40 y 21 (24.4) 4 (20) 10 (18.5)
41-50 y 31 (36) 4 (20) 21 (38.9)
51-60 y 20 (23.3) 5 (25) 18 (33.3)
61-70 y 11 (12.8) 7 (35) 0
71-80 y 3 (3.5) 0 0
Age, mean ± SD, y 48.46 ± 11.83 53.8 ± 2.81 46.01 ± 8.98
History of COVID-19 testing, n (%)
Positive 2 (2.4) 1 (5) 2 (3.7)
Negative 40 (47) 12 (60) 12 (22.2)
Not tested 44 (56.1) 7 (35) 40 (74.1)
New consultation, n (%) 85 (20.5) 3 (0.7) 54 (13.1)
Follow-up consultation, n (%) 147 (35.5) 17 (4.1) 108 (26.1)

In the teleconsultation phase, a higher percentage (98.8%) of patients with oncology-related lymphedema were immunocompromised than patients with non–oncology-related lymphedema. Similarly, the virtual phase included 80% of patients with oncology-related lymphedema. The F2F consultation phase included the highest proportion (53.7%) of patients with non–oncology-related lymphedema (Table 2). Nearly half of the participants who were newly evaluated indicated lymphedema-associated pain, and approximately 30% of patients who were newly evaluated had complaints of ROM restriction, ranging from mild to severe. The volume of the swelling that was objectively evaluated in the F2F phase is presented in Table 2.

TABLE 2 - Demographic Data Across the 3 Consultation Phases (Continued)
Mean of Communication Oncology/Nononcology Diagnosis Pain, n (%) ROM, n (%) Volume,a n (%)
Teleconsultation
(phase 1)
85/1 (98.8%/1.2%) Breast cancer–related lymphedema


Primary upper-limb
lymphedema
Head and neck
Lower limb
Pre-Op, n (%)
Early Post-Op, n (%)
Chronic, n (%)



Primary, n (%)
Secondary, n (%)
15 (17.4)
37 (43)
31 (36)
0 (0)

1 (1.2)
1 (1.2)
1 (1.2)
43 (50) 24 (28) N/A
Virtual consultation
(phase 2)
16/4 (80%/20%) Breast cancer–related lymphedema


Primary upper-limb
lymphedema
Head and neck
Lower limb
Pre-Op, n (%)
Early Post-Op, n (%)
Chronic, n (%)



Primary, n (%)
0
4 (20)
8 (40)
0

4 (20)
4 (20)
10 (50) 7 (35) 6 (30)
Face-to-face consultation (phase 3) 25/29 (46.3%/53.7%) Breast cancer–related lymphedema


Primary upper-limb
lymphedema
Head and neck
Lower limb
Pre-Op, n (%)
Early Post-Op, n (%)
Chronic, n (%)



Primary, n (%)
Secondary, n (%)
2 (3.7)
3 (5.6)
18 (33.3)
1 (1.9)

2 (3.7)
24 (44.4)
4 (7.4)
27 (50) 18 (33.3) Mild
Moderate
Severe
No change
28 (51.9)
16 (29.6)
8 (14.8)
2 (3.7)
Abbreviations: Chronic, referred after 1 month of surgery; Early Post-op, referred within 2 weeks of surgery; n, number of patients with impairment.
aVolume refers to number of patients with increase in limb size. Mild indicates a difference of 1 to 3 cm between the affected and unaffected limbs. Moderate indicates a difference of 3 to 5 cm between the affected and unaffected limbs. Severe indicates a difference of more than 5 cm between the affected and unaffected limbs.

The verbal feedback documented in the patients' electronic files during the tele- and virtual consultation phases indicated that 90% of the participants were satisfied and reported that the online educational treatment resources that they had received had good clarity.

DISCUSSION

This study was conducted to elucidate the modifications made to the pre–COVID-19 department lymphedema management approach and practice guidelines to manage this often-underrated medical condition by the team of CLTs in the outpatient setting during the COVID-19 pandemic (Figure 4). In contrast to the telerehabilitation approaches that are widely implemented for musculoskeletal conditions23 and other chronic conditions, such as stroke31 and diabetes,32 there is limited evidence of this approach in patients with lymphedema19,20 and it has been scarcely explored for efficacy, feasibility, patient satisfaction, and adherence even before the pandemic. This knowledge gap warrants research both during and after the pandemic. The smooth transition from regular F2F sessions to tele- and virtual consultations was supported by the MOPH initiative to shift to remote consultations as well as by the unique health care system in Qatar, especially because lymphedema management services and bandaging supplies and readymade compression garments were being obligatorily provided.

F4
Fig. 4.:
Overall modulated workflow.

The article highlights the development of a departmental operational crisis plan that comprised a team of CLTs who adapted to different roles, such as Online Educational Resource Coordinator, Triaging Clinical Pathway Coordinator, Remote Consultation Coordinator, and Safety Measures Coordinator. The new roles required them to closely work with various facilities, such as the Institutional International Training Center for Software Virtual consultation Training and the Infection Control Team, besides developing online self-management videos and educational resources and their immediate implementation while describing the treatment in different languages that proved to be a vital asset in the continuity and quality of care.

Besides the challenges described for each phase, patients faced technical difficulties in receiving the online resources via e-mail. Opening the video link in conditions with low Internet connectivity was a specific issue for patients with low socioeconomic status, and downloading the virtual consultation app (VSee) was a challenge for elderly patients who were not well versed in computer-based applications. We suggest the inclusion of more than one explanation/informational session by the remote consultation coordinator and the involvement of caregivers to smooth the process.

The small number of patients in the virtual consultation phase was attributed to the lengthy licensing process of the MOPH to provide the requisite security and confidentiality of the VSee clinical application for our population, with regard to the cultural background and significance due to the restriction on the use of common video applications, and to the time taken for therapists' training and the phased implementation in the departmental setting.

The major challenge that CLTs encountered when undertaking telerehabilitation for the population of patients with lymphedema was the lack of an objective measure of limb volume, which is a key requisite for clinical evaluation. Research on the telehealth assessment of patients with lymphedema is very limited, and preliminary research20 on the use of an Internet-based system to assess lymphedema in breast cancer with the assistance of caregivers has shown encouraging results. In the future, the use of existing infrared 3-dimensional technologies33 for limb volume measure or a user-friendly advanced technology that can remotely assess and standardize the delivery of lymphedema care through telerehabilitation may help overcome such barriers.

The limitations of this research report include the fact that, as it was not an original research study, we have not evaluated the efficacy of the approach used or qualitatively analyzed the patients' acceptance and satisfaction. Therefore, further research is needed to rationalize the overall patient experience of the present care delivery design to guide the future directions of telerehabilitation in patients with lymphedema after the COVID-19 pandemic.

CONCLUSION

Physiotherapy for lymphedema management, which mostly relies on manual hands-on sessions, has been affected during the COVID-19 pandemic. The challenges of modulating the current gold standard approach were underpinned by the adoption of different roles by the CLTs and the development of multilingual online education videos for treatment. This research provides new insights that may help therapists overcome the existing challenges in health care systems, especially in cases where telerehabilitation is not the norm. Our experience suggests that a hybrid system of F2F and tele/virtual consultations may provide an opportunity to improve accessibility to lymphedema care and reduce waiting time and may thereby become a sustainable model of care even after the pandemic. These perspectives revolutionize the way that clinical care is delivered to patients with lymphedema during the COVID-19 pandemic.

ACKNOWLEDGEMENTS

The authors are grateful to Dr Samer Hammoudeh for his encouragement in producing this article.

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Keywords:

cancer; COVID-19; lymphedema; telerehabilitation

© 2021 The Authors. Published by Wolters Kluwer Health, Inc.