Evaluation of Care and Perspectives of Lymphedema Patients during the COVID-19 Pandemic

Abstract

Background The COVID-19 pandemic poses a major challenge for patients with chronic disease as well as their care. In particular, multiprofessional and multidisciplinary care of patients with lymphedema as well as prevention of complications and exacerbations appear significantly impaired. The aim of this study was to present the impact of the COVID-19 pandemic on the life satisfaction of lymphedema patients and to provide a patient perspective on healthcare provision.

Methods 100 patients of a lymphedema outpatient clinic were interviewed about the use of health services, therapies and their personal situation during the pandemic. The SWLS (Satisfaction with Life Scale) was used to evaluate life satisfaction.

Results The SWLS decreased from 24.5 ± 6.7 SD pre-pandemic to 21.4 ± 7.4 SD during the pandemic (p < 0.0001; r = -0.58). There was a trend toward fewer physician visits with increased incidence of complications. Lymphedema-typical non-physician health services showed significantly reduced access rates. Telemedical services were well accepted.

Conclusion The subjective quality of life of patients with chronic lymphedema decreased significantly and with a strong effect. This underlines that this group is particularly vulnerable to problems concerning health care during a pandemic and therefore require additional care.

Keywords

lymphedema - COVID-19 - pandemic - telemedicine - telehealth - quality of life

Background

The COVID-19 pandemic was and continues to be a major challenge, especially for individuals with chronic disease, disabilities, or impending disabilities and rehabilitation needs [1] [2] [3] [4]. Various individual problems and restrictions to care arose, in particular, during the nationwide infection protection measures and their restrictions on public life (“lockdown”), with concrete negative consequences on participation, including the use of healthcare services. Concrete consequences were described for different patient groups [5] [6].

The group of patients with chronic lymphedema require regular and extensive care provided by interdisciplinary and multi-professional networks [7]. Various healthcare providers and professional groups, such as doctors from various disciplines, physiotherapists, medical massage therapists, and medical supply stores, are routinely involved in the deployment of permanent, usually lifelong, care. The known comorbidities that exist in this group of patients require additional consideration and treatment [8].

During the measures to combat the pandemic in 2020, a consensus document was drawn up, that was intended to assist with the grading of case severity and treatment needs of patients with venous and lymphatic diseases [9]. This consensual approach which included telephone, video-based or telemedicine communication options was intended to avert a negative outcome for the individual patient, as far as this was possible, whilst at the same time achieving a considerable reduction in the deployment of medical care services. Particularly in the medical field, such offers were also implemented locally in Germany.

In the case of lymphedema diseases, this approach is opposed to the risk of exacerbations and complications due to the reduced deployment of therapeutic care, for example by delaying an intensive phase I CDT (complex decongestive therapy) which is normally indicated or by interrupting regular manual lymphatic drainage or due to medical institution supply delays for adequately effective compression materials, such as compression stockings or bandages. Movement therapy offers, such as functional training and rehabilitation sports, are also customary components of complex care and may lead to worsening effects if they are omitted.

A not insignificant number of queries from patients and a perceived high level of uncertainty prompted us to investigate the patients’ perspective with regard to their experience of the care situation, risks and compensation strategies under pandemic conditions.

Methods

Study design

This study was approved by the Ethics Committee of Charité – Universtitätsmedizin Berlin (application number: EA1/107/21) and registered with the German Register of Clinical Studies (DRKS) (ID: DRKS00026728).

A survey was carried out among a sample of patients with chronic lymphedema receiving permanent care from a specialist university lymphological outpatient clinic. Respondents were asked about their current situation, in particular about disease-related issues. As a baseline, the patients were interviewed about their pre-pandemic life situation (reference period 2019), which was then compared with their situation during the pandemic (reference period March 2020–February 2021). Patient recruitment was based on a review of patient files from the 4th quarter of 2019 with patients subsequently screened for the inclusion and exclusion criteria outlined below.

Subject

During the study period, all study participants were undergoing regular treatment at the University Outpatient Clinic (UOC) which conducted the study.

Inclusion criteria:

1. Complete documentation and contact details

2. Age of majority (≥18 years)

3. Diagnosis “lymphedema” [ICD I89.0; I97.2; I97.80–88; Q82.0]

4. Presented at the University Outpatient Clinic (UOC) in the 4th quarter of 2019

5. Treatment history in the UOC (appointments in min. 2 of the 4 quarters of 2019)

Exclusion criteria:

1. Response received after the deadline for returns

2. Incomplete completion of the questionnaire

3. Inadequate understanding of the German language, both spoken and written

Data sources and variables

The data for this study were collected from the patient files and from the questionnaires completed by the patients. Basic demographic data, basic disease-related data, data on the current medical situation as well as data relating to the quality of life and treatment situation before and during the pandemic were collected.

We opted to assess quality of life with the SWLS (Satisfaction With Life Scale) [10] [11]. The SWLS is a score composed of five components for the subjective assessment of the personal quality of life by respondents. Scores range from 5 to 35. These values are scored as follows: 35–31 extremely satisfied; 30–26 satisfied; 25–21 rather satisfied; 20 neutral; 19–15 rather dissatisfied, 14–10 dissatisfied; 9–5 extremely dissatisfied.

In addition, respondents were asked about their behavior and subjective state of health during the pandemic using a non-standardized questionnaire.

Case number calculation

The number of cases was defined based on the inclusion and exclusion criteria. Given that the UOC treats about 6,000 cases per year, the study team expected to be able to contact about 200–300 patients. The recruitment rate could be extrapolated from other UOC studies and was expected to be of the order of n = 100 subjects. The following case number estimation was carried out assuming a normal distribution of the data: assuming a case number of n = 100 and an expected difference of the mean values of 3 scale points as well as a standard deviation of the differences of 10, a two-sided t-test has a power of 84% at an alpha error of 0.05. The case number estimation was carried out with the software nQuery + nTerim 4.0.

Statistical methods

The characteristics of the study participants are given as a mean value with a 95% confidence interval. The Wilcoxon Signed Ranks test was used to compare the SWLS. The other results are reported descriptively. The p-values and effect sizes shown are to be considered as explorative.

Results

Participants

We screened 844 patient files from the Physical Medicine, University Outpatient Clinic. N=100 patients were included in the study. [Fig. 1] shows this in a flow chart (modified according to CONSORT [12]).

Fig. 1 Flow chart modified according to CONSORT [12]. I1–4 denote the inclusion criteria: I1: “complete (contact) data”; I2: “Age of majority (≥18 years)”; I3: “Diagnosis of lymphedema (all corresponding ICDs)”; I4: “regular patient” (presented at the UOC for 2 of the 4 quarters of 2019).

[Table 1] lists the characteristics of the study group. [Fig. 2] shows the proportions of diagnoses in the study group. At 48%, secondary lymphedema was the most common diagnosis observed. According to the guideline, the majority of respondents, namely 72%, had stage II lymphedema, predominantly involving the lower limbs (79%) [7]. 69% of patients considered themselves to be at risk of a coronavirus infection.

Table 1 Demographic characteristics.

Demographic characteristics (n = 100)	study group (mean (95 % CI); percent)
age (years)	65.7 [62.0;67.4]
height (cm)	165.4 [163.7;167.1]
weight (kg)	84.2 [79.3;89.1]
BMI (kg/m²)	30.6 [29.1;32.4]
female	78%
employed	42%
reduction of employment	30%
care level present (at least PG 1)	19%
degree of disability present (at least GdB 20)	69%
“Corona risk patient” according to self-assessment	69%

Fig. 2 Baseline clinical data of the study group.

Overall Satisfaction With Life (SWLS)

On average, the Satisfaction With Life Scale (SWLS) fell from 24.5 ± 6.7 SD pre-pandemic to 21.4 ± 7.4 SD during the pandemic. This difference is highly significant (p < 0.0001), at r = –0.58 the size of the effect is indicative of a strong effect. The standard deviation of the differences was 5.6 (Mean 3.19; Minimal Difference 1). [Fig. 3] shows the comparison of the SWLS scores.

Fig. 3 Satisfaction With Life Scale for n = 100 lymphedema patients. Comparison of the pre-pandemic situation with the situation during the pandemic. [35–31 extremely satisfied; 30–26 satisfied; 25–21 rather satisfied; 20 neutral; 19–15 rather dissatisfied; 14–10 dissatisfied; 9–5 extremely dissatisfied].

Use of healthcare services

The exploratory results from the evaluation of the survey on the use of selected healthcare services showed that the number of doctor’s visits during the pandemic decreased significantly (p < 0.0001). However, it was noticeable that the number of visits to the doctor due to lymphedema complications showed a contrary trend and actually increased (15 vs. 20 visits). 48% of patients stated that appointments were cancelled by the healthcare providers. Physiotherapist appointments were the most frequently cancelled (15%). Consistently with this, 37% of patients reported to have cancelled appointments. Again, the largest proportion of cancellations concerned the range of services provided by physiotherapists (22%).

The use of lymphedema-typical non-medical healthcare services (CPDT phase I, compression aids, visits to the medical facility and manual lymphatic drainage) is shown in [Table 2].

Table 2 Changes in the use of lymphedema-typical non-medical healthcare services during the pandemic (CDT (complex decongestive therapy)).

Use of lymphedema-typical non-medical healthcare services	Changes
CPDT phase I	–31%
New supply of compression aids	–14%
Visits to the medical supply store	–12%
manual lymphatic drainage	–2%

Replacement options

Replacement options were utilized by 23% of patients. Video consultations with the physician, which was not an established pre-pandemic option, accounted for the largest proportion (21%) of these replacement options, by far. Internet apps (3%), information on websites (3%) and self-help groups (2%) were used less frequently. 23% of the study group said they had more disease-related expenditures.

Exercise and sports

61% of patients reported to have exercised less due to the pandemic. There was a shift from the professional sector (gyms, rehabilitation sports) to the private sector. Exercising on your own and recreational sports increased (see [Table 3]).

Table 3 Changes in exercise therapy and sports during the pandemic.

Exercise therapy and sports	Changes
gyms	–13%
rehabilitation sports	–10%
self-exercises	+ 6%
recreational sports	+ 12%

Study participants’ fears

94% of study participants found the hygiene measures in facilities that are used for the treatment or care of lymphedema to be sufficient. 37% of patients said they were afraid of being infected whilst visiting healthcare facilities. 60% were afraid of being infected with the SARS-CoV-2 virus, and 17% also had fears relating to their lymphedema. 67% avoided public transport. This resulted in 19% of patients having fewer opportunities to access healthcare services.

Treatment objectives

In 23% of respondents, the treatment objectives (based on the patient self-assessments) were not achieved. 40% of patients reported to have experienced a worsening of their lymphedema findings. The most common symptom reported was an increase in lymphedema volume (34%), often also a hardening of the tissue (19%), cellulitis (6%), more rarely movement restrictions, pain, blisters or lymphatic cysts. However, 91% of patients also stated that they were coping well with the current situation with regard to their lymphedema.

Discussion

Key results

In a sample of lymphedema patients, we were able to identify a strong and significant deterioration in life satisfaction as a result of the pandemic. This may be compared to published normal population data before the pandemic and to a subgroup analysis of pregnant women during the pandemic [13] [14]. On average, the SWLS of the normal population sample was 26.5 ± 5.6 SD (men 26.3 ± 5.6 SD, women 26.6 ± 5.6 SD) which is already above the score of the subgroup of lymphedema patients examined pre-pandemic, represented by an average SWLS of 24.5 ± 6.7 [14]. The examination of pregnant women, in turn, found an average pre-pandemic SWLS of 26.0 (23.0; 29;0) during the early phase of the pandemic and an average 26.0 (23.0; 29.0) and 25.0 (22.0; 28.0) in the late phases of the pandemic. There was however no overall significant difference here [13]. In contrast, the SWL score in the sample of lymphedema patients significantly decreased from 24.5 ± 6.7 SD pre-pandemic to 21.4 ± 7.4 SD during the pandemic. Comparative studies on patients with lymphedema have not yet been carried out. Chronically ill individuals and individuals with disabilities clearly represent vulnerable groups in this regard in pandemic situations and this also appears to apply to the sample of patients with lymphedema examined here.

In the specific disease-related questions, it was particularly striking that fewer visits to the doctor and a lower use of additional healthcare services on the one hand, coincided with more lymphedema complications on the other. This shows clear parallels with other chronically ill persons [4]. A very large proportion of lymphedema patients (40%) reported deteriorations in findings, specifically increases in lymphedema volume and hardening, but also erysipelas. In addition to a presumption of causality between these observations – which, however, was not substantiated for reasons of study design – these data prove the relevance of multi-specialty care in an outpatient network in which all different groups of professionals keep an eye on the risks that patients may be facing. Outpatient care should include regular compression care, manual lymphatic drainage, and physiotherapy. Regular medical check-ups are also essential. The supply of aids with regard to compression and remedies for CDT, as well as the instructions for self-treatment (training videos, etc.), appear essential [2].

In addition to the pandemic-related restrictions of options, 37% of patients were afraid of visiting health facilities. The poorer care is therefore not only attributed to the missing or limited offers, but also to the change in patient's behavior [4]. This assumption is consistent with the experience of physiotherapeutic practices during the observation period: thus, Litke et al. described failures of therapies, specifically in patients at increased risk of severe disease [15]. Given these circumstances, the concern was expressed that it is precisely this group of patients that may also fall behind in their therapy progress and suffer a progression of degenerative diseases and chronification of acute diseases.

Guided sports declined during times of pandemic, but independently organized sports appeared to increase. Physiotherapy is extremely important in lymphedema diseases, because the pressure peaks (working pressure) achieved by muscle activity create a high decongestive effect under supportive compression [7]. Telemedicine or tele-rehabilitation, ideally disease-specific, formats are suitable for the shift of physiotherapy to the recreational sports sector observed here.

The acceptance of telemedicine physician consultations was good, also in the 70+ age group, while little use was made of other options, e.g. apps. Telemedicine options can cover some of the missed appointments and should be used to bridge gaps in the medical or physiotherapeutic care of patients in the event of limitations in the healthcare system [2] [16] [17] [18] [19]. Nevertheless, such alternatives should not be seen as substitutes but as additional options [19]. Particularly in complex cases, the personal attendance of the patient should be favored [2] [9] [20] [21] [22]. These cases include inflammation, recurrent erysipelas, highly volatile edema and stage III lymphedema.

Although 91% of patients stated that they had coped well with the given situation with regard to their lymphedema, at the same time 40% reported deteriorations in their findings. Compensation mechanisms for comparable situations may also involve video consultations and an even more strongly supported self-management strategy. In terms of compression materials, the flexibility offered by so-called compression “wraps”, may be useful. These medical adaptive compression aids could be used, for example, in the case of short-term volume exacerbations of the affected limbs, if compression bandaging is not possible on-site [23] [24] [25] [26]. If these materials have been previously prescribed to the patient and the patient is familiar with their use, these options may be deployed as a bridging solution in the event of any type of missed therapy and/or increases in lymphedema volume. However, the initial application of these materials requires a thorough briefing and at least a one-off handling practice to achieve suitable results [23] [24].

Limitations and bias

A pure survey study was carried out. Basically, a bias is present here because participation is skewed towards patients that are inherently interested in the treatment and prevention of their disease. For example, the data on personal commitment may differ from the average patient population. Also, outcomes were measured only within a longitudinal sample and with patient-reported outcome parameters. Part of the survey consisted of retrospective assessments, so distortion effects are also conceivable here.

Transferability

The sample of long-term patients in a specialist university outpatient clinic may not be readily transferable to the overall lymphedema patient population, since, on the one hand, the specialist outpatient cases may be more complex and, on the other hand, specialist outpatients may be better informed and may have a more extensive understanding of their disease.

Conclusion

Under pandemic conditions, lymphedema patients suffered a decrease in subjective satisfaction with life. Disease-specific, reduced use of healthcare services is accompanied by an increased in the rate of complications. Telemedicine options can be effective as a bridging solution, but they cannot replace network-based treatments involving multiple specialties.

Interessenkonflikt

ML, KS und AR geben an, Vortragshonorare erhalten zu haben (Julius Zorn GmbH). ML gibt an, Forschungdrittmittel erhalten zu haben (Lohmann & Rauscher GmbH)

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Publication History

Article published online:
18 August 2022