Acute leukemia (AL) is a dreaded and life-threatening illness characterized by acute onset, rapid progression and poor prognosis. A recent survey of Global Cancer Statistics in 185 countries has found that 437,033 new cases and 309,006 deaths of leukemia occurred worldwide in 2018, on a general increase, including China. Although chemotherapy remains the primary treatment for AL and offers great potential for induced remission rate, patients, especially newly diagnosed with AL, suffer a lot not only from a range of physical function impairments such as fatigue, pain, nausea and vomiting, but also a series of psychological disorders like anxiety, desperation, self-image disorder and low self-esteem as well[5–7].
It has long been recognized that various types of illnesses, including hematologic malignancy, are associated with stigma[8, 9], which now being considered as a pervasive fundamental cause of population health inequalities. Stigma and its concept were first mentioned in 1963 by sociologist Goffman. It was described as an attribute which is deeply discrediting due to the blemishes of body image, unpleasant stereotypes individual having, or being a member of an undesirable social group. In 2000, Fife put forward a concept in analysis of the relationship between mechanisms of stigma and the self (self-esteem, body image, and mastery). In his study, the conceptualization of stigma is grounded in Modified Labeling Theory. Based on this basis, he constructed the Social Impact Scale (SIS) containing four dimensions named social rejection, social isolation, financial insecurity, and internalized shame as a tool to assess the cancer-related stigma. It is generally believed that public stigma is related to social discrimination and patients' negative self-perception, which can be internalized into internal stigma and lead to proximal or distal consequences such as delay in seeking medical treatment, decline in treatment adherence, poor health outcomes, reduced chance for survival, lower QOL or even abandoning therapy in desperation.
When people diagnosed with AL, they already developed with various functional impairments due to anemia, infection, or hemorrhage trend. The severity of the illness, and the decrease in functional healthy status, did result in patients unable to participate in normal social life and setting them apart from others. Consequently, the more social isolated they involving, the more social rejected they may feel. Besides, the cost of AL treatment is enormous, some chemotherapy drugs are not covered by the basic medical insurance system in China. This could evidently bring grievous socioeconomic pressures for most patients, especially disadvantaged groups labeled as drain on economy or having urgent demand for social welfare in very beginning, putting them in particular risk for low self-esteem.
What’s more, in China, people seldom talk about deaths for it was ominous. Even after confirmation of AL diagnosis, the desire to maintain normality in life can sometimes make them go to extreme lengths to conceal self-image disorder from others. Some social taboos frequently prevent individuals from seeking conventional health-care help, especially for socially stigmatized diseases such as cancer. For those survivors, they concern about the disclosure of their medical history, making them feel more vulnerable to the “internalized shame”, thus leading to the occurrence of stigma. Given the circumstances and characteristics of AL, we thereby use SIS to assess the level of stigma among patients in our study.
Numerous studies[5, 17] have demonstrated anxiety and depression are two most common mental health disorders and negatively affect clinical outcomes in patients with AL. Regardless of highly developed medical science and increased survivorship, when people newly diagnosed with incurable disease, they experience with co-morbid depression or anxiety, and it was significantly associated with stigma. Those with high level of depression or anxiety are predisposed to developed negative attitudes toward cancer, to hold stereotypical views of themselves and to specially reinforce the feelings of stigma[19, 20]. Such circumstance can also be found in AL patients during our clinical daily work. So, we wonder and want to identify if these two very common negative emotions contribute to stigma in patients newly diagnosed as AL.
Coping represents the strategies that individuals use to manage the internal and external demands and plays a crucial role in people instinctively reacting to life stressors, threats, or specific situation they encounter. After diagnosed as AL, they may experience a variety of practical, social, emotional, and existential concerns due to the disease, side effects of treatments, and poor prognosis. As to AL patients, it’s quite clear that positive coping is associated with higher QOL, reduced depressive symptoms and better clinical outcomes, while negative coping responses were found to be associated with greater stigma[24, 25]. When people adopt positive coping skills, like being active in seeking for solutions or feeling confident in their coping strategies, stigma decreases. Therefore, we aim to find out whether coping strategy, the important variable, is related to stigma in AL patients, and can be considered as protective factor as other studies have revealed.
The occurrence of cancer stigmatization among survivors ranges from 13%-80%[20, 27, 28]. However, little research has been designed to identify whether people with AL experience stigma. Furthermore, no previous studies investigated the prevalence of stigma and its relationship with most common negative emotions and significant coping styles in patients newly diagnosed as AL. Based on the hypothesis that stigma experiencing may differ from different cultures and cancer types, therefore, the study was conducted to address the gap in understanding of stigma and its possible influencing factors among patients with first diagnosis of AL in China.