To our knowledge, this is the first study to explore the correlation between acceptance of disability, coping style, perceived social support and quality of life among Chinese patients with chronic lymphedema. Three important findings are drawn from our research. First of all, Chinese patients with chronic lymphedema had moderate levels of QOL, AOD, and PSS and tended to adopt a confrontation coping style. Next, QOL was negatively associated with AOD and PSS, while positively related to avoidance and acceptance-resignation coping styles. At last, the predictors of QOL and its domains included AOD, the number of symptoms, acceptance-resignation, avoidance, the degree of pain, PSS, the educational level, the place of residence, and the sexual distress caused by lymphedema. We deem that our findings will add knowledge to the improvement of QOL in patients with chronic lymphedema.
In our study, patients with chronic lymphedema had moderate levels of QOL. Compared with the results of the study using FLQA-LS by Herberger et al. (2017) , the QOL of patients with chronic lymphedema in the Chinese population (2.23±0.68) is better than that of the German population (2.4±0.8); Concerning the different domains of QOL, our study showed that patients with chronic lymphedema had the worst QOL in mental condition (2.58±0.79), which is in line with the result of Herberger et al. (2.70±0.90), indicating that chronic lymphedema severely compromised patients’ mental health. A possible explanation might be that patients with chronic lymphedema often suffered from decreased self-esteem and self-confidence, depression, frustration, and loss of body image due to changes in their normal functional status and appearance caused by lymphedema . Hence, healthcare staff should pay more attention to the mental well-being of patients and develop intervention programs to help patients cope with psychological issues, thereby improving QOL.
Our study showed that patients with chronic lymphedema had moderate levels of AOD, which was positively correlated to QOL and its specific dimensions, indicating that the higher the levels of AOD, the worse the QOL of patients. Patients with better AOD had good QOL since AOD plays a vital role in helping individuals adjust their value system after experiencing stressful life events, thereby relieving negative perceptions and improving QOL . Among the domains of AOD, the highest score appeared in the “enlargement of scope of values” domain, indicating that even though patients suffered from lymphedema, they were still able to recognize the significance of values, not those assumed to be lost. Given the above finding, AOD can be regarded as an essential factor in the development of intervention programs to improve the QOL of patients with chronic lymphedema.
In our study, we demonstrated that the number of symptoms was associated with QOL of chronic lymphedema patients. Chronic lymphedema patients with more symptoms were likely to have worse QOL. Symptoms associated with chronic lymphedema mainly included swelling, pain, fatigue, heaviness, tightness, numbness, stiffness, and impaired limb mobility, which pose a threat to the patient's psychological health and social functions . Dominick et al. found that there was a positive correlation between the number of symptoms and symptom distress in patients with chronic lymphedema. With the progression of lymphedema, the number of symptoms and the symptom distress experienced by patients increase, which affects their QOL. Therefore, healthcare providers should develop intervention programs for symptoms caused by lymphedema to alleviate the patient’s symptom distress and thus improve their QOL.
Our study illustrated that patients with chronic lymphedema are prone to choose confrontation coping style, indicating that the patients tend to treat chronic lymphedema with a positive attitude. The results of our work also suggested that there was a positive relationship between acceptance-resignation and avoidance and QOL, which meant acceptance-resignation or avoidance coping strategies can lead to poor QOL. It was acknowledged that acceptance-resignation and avoidance were considered negative responses to stressful events and had been shown to elicit a negative impact on QOL . In the short term, patients may be able to relieve stress by acceptance-resignation or avoidance coping, however, excessive use of negative coping strategies can result in severe psychological problems, aggravate patients’ health outcomes, and thus impairs patients’ QOL . Thus, based on our findings, interventions targeted at negative coping styles might have a better effect on the ameliorations of QOL for patients with chronic lymphedema.
In the current study, patients with chronic lymphedema had moderate levels of PSS, which was negatively associated with QOL. This implies that patients with chronic lymphedema who perceived more social support may have a better QOL. It is widely known that we humans are “social beings” with complicated social networks that can influence various aspects of an individual’s health status . Social support can produce helpful effects directly or act as a buffer to protect individuals from adverse effects when facing stress. Moreover, some hypotheses suggested that social support might indirectly exert a positive effect on patient's immune systems, thus accelerate their recovery from disease and improve their QOL . Among all the domains, family support and friend support are significantly related to QOL, indicating that family and friend support may be crucial for patients with chronic lymphedema. Given these findings, it is advocated that PSS should be recognized and promoted by medical staff when taking care of chronic lymphedema patients.
The finding of our study showed that the degree of pain was positively correlated with patients’ QOL, indicating that patients with higher degrees of pain were likely to have worse QOL. Additionally, in or study, measured by VAS, 61.3% of Chinese patients with chronic lymphedema had no pain, 25.2% had mild pain, and 13.5% had moderate pain, while the study conducted by Herberger et al.  in the German population showed that 45% of patients had no pain,16% had mild pain, 24% had moderate pain, and 14% had severe pain. This means that chronic lymphedema patients in China suffer less pain than those in Germany. Given this finding, healthcare professionals should assess the patient’s pain promptly and provide professional guidance to alleviate their pain, thereby improving their QOL.
In our study, patients with low educational levels are closely related to poor QOL. Education may have an impact on QOL through cognition . Patients with different educational backgrounds had different responses to diseases and treatments. Compared with patients with low levels of education, high-educated patients may be more adaptable to the changes brought about by the disease because they have a deeper understanding of the information provided by healthcare providers . Hence, the finding of our study may imply that chronic lymphedema patients with low educational levels required more interventions aimed at improving their QOL.
Sexual distress refers to the different negative emotional reactions that people experience in terms of their sexuality, such as frustration, bother, anxiety, which ultimately have a negative impact on QOL . In our study, we demonstrate that sexual distress is positively associated with QOL, which is mainly manifested in the social life domain. This means that chronic lymphedema patients with sexual distress caused by lymphedema have poor QOL. Therefore, healthcare staff should promptly evaluate patients’ sexual distress. For patients with sexual distress, healthcare staff should adopt targeted intervention programs to help patients solve problems in their sexual life, reduce their sexual distress, and thus improve their QOL.
It has been documented that residing in the rural area has adverse effects on QOL . Our study confirmed that patients with chronic lymphedema who were residing in a rural area had worse QOL compared to those who were from urban areas, which mainly manifested in the therapy of lymphatic disorder domain. This might be due to the fact that residing in rural areas is commonly related to delays in diagnosis, the challenges of long-distance travel to urban medical centers, and limited access to lymphedema services , which place a burden on chronic lymphedema patients. Hence, given the lack of lymphedema-related health resources in rural areas, developing telemedicine-based and navigator-based outreach programs that can bring lymphedema care nearer to rural areas may increase rural patients’ QOL.
There are several limitations to this study. To begin with, this study was conducted in five tertiary hospitals in Guangdong province, China, which might not truly represent all chronic lymphedema patients in China, thus limiting the nationwide generalization of the findings. Moreover, the findings were not able to provide evidence for causation because of the cross-sectional study design. Additionally, there might be a degree of social desirability bias due to the use of self-report questionnaires.