The Paradox of High Quality of Life and Adherence to the Treatment of Patients with Lymphedema of the Lower Extremities

Introduction, Objectives, and/or Purpose: Introduction. During the study of quality of life (QOL) indicators in some patients with lymphedema of clinical stages III-IV, we revealed a paradox of high QOL with pronounced clinical manifestations of the disease. A few publications have been devoted to the study of the disability paradox, when many patients with serious and persistent functional impairments report good or excellent quality of life despite everything.
The aim of the study was to establish the causes and predictors of the paradox of high quality of life in patients with progressive clinical stages of lymphedema of the lower extremities.

Methods: Materials and methods: The results of testing of 60 patients with lymphedema of the lower extremities (LE) of the I-IV clinical stages (Pokrovsky A.V. and Savchenko T.V. classification, 2006) were prospectively analyzed with the help of the questionnaire QOL CIVIQ20. The study was conducted at the clinical base of the FSBI "NMRC for RB" of the Ministry of Health of Russia from 2018 to 2021. The average age of patients was 51.62 ± 9.3 years, of which men were 7 people, women were 53 people. Stage I of LE was observed in 4 patients (6.7%); stage II of LE - in 24 patients (40%); stage III of LE – in 21 (35%); stage IV of LE – in 11 patients (18.33%).

Results: Results. When analyzing the indicators of QOL, a deterioration in total QOL was noted to 62.50±12.22 points (20 points – full health, 100 points – maximum decrease in QOL); on the pain scale – 12.36± 2.93 points, on the physical scale -13.44± 3.50 points, on the social scale – 10.08± 2.89 points, on the psychological scale - 26.80± 6.61 the average for the group. However, in a detailed study of QOL in patients of stages III-IV, we identified a group of 15 patients (average age 60.4±7.60) who reported a slight decrease in QOL according to the questionnaire. Thus, the total QOL in these patients was 37.93 ± 4.06 points; on the pain scale – 7.06 ± 1.75 points; on the physical scale -7.66 ± 2.09 points; on the social scale – 5.06 ± 1.75 points; on the psychological scale - 18.13 ± 2.67 points. With a detailed analysis of complaints, anamnesis, it turned out that all patients with pronounced clinical manifestations of LE (pronounced edema deforming the limb, trophic skin disorders in the form of papillomatosis, lichenification, lipodermatosclerosis) are characterized by low adherence to treatment, non-compliance with prescribed protocols of compression therapy, rare single treatment to the doctor and isolated episodes of hospitalization when the clinical picture was dominated by low aesthetic cosmetic defects.
Discussion. In the QOL study conducted among people with disabilities, 54.3% of people with serious functional impairments also reported that they had excellent or good QOL. These figures were comparable to 80-85% of people without disabilities who were satisfied or very satisfied with their quality of life in various national surveys of the 1990s (Leitman et al., 1994). Thus, the paradox of disability is established in two forms: firstly, persons with disabilities report serious limitations in their daily activities, problems in fulfilling their social roles and experience constant discrimination but at the same time talk about excellent or good quality of life; and, secondly, high quality of life which is reported by many respondents may be related to the "secondary benefit" that occurs when people with disabilities of certain functions adapt to new conditions for them and accept them.
In our study, we believe that in the identified 15 patients with advanced clinical stages of LE (25%) who rated their QOL due to the disease as good or satisfactory (a decrease in QOL by 17.93 points compared to full health - 20 points), there is a second variant of the high QOL paradox. The patient accepts his physical condition, gets used to it and ceases to notice this aesthetic problem and, what is most dangerous, stop fighting with edema. This has a psychological background: such a patient does not consider himself sick and is satisfied with his quality of life. This is due, in our opinion, to the low adherence of these patients to treatment, non-compliance with compression protocols, lack of understanding of the importance of the stages of treatment and rehabilitation. All these factors together contribute to the progression of LE with the development of advanced stages. As you know, the treatment of advanced forms of LE is extremely costly not only economically, but also psychologically. Thus, the circle closes.

Conclusion(s):

Conclusions: In our opinion, the identification of patients with LE with paradoxical high QOL can be regarded as a predictor of the progression of LE and requires the angiologist to pay close attention to the tactics of managing such a patient (emphasis on conducting more in-depth training courses and schools for patients) to increase their adherence to treatment.