Assessing the current situation and the influencing factors affecting perceived stigma among older patients after leukemia diagnosis

Abstract

BACKGROUND

Psychological problems are becoming increasingly prominent among older patients with leukemia, with patients potentially facing stigmatization after diagnosis. However, there is limited research on the stigma experienced by these patients and the factors that may contribute to it.

AIM

To investigate the stigma faced by older patients after being diagnosed with leukemia and to analyze the potential influencing factors.

METHODS

A retrospective analysis was conducted using clinical data obtained from questionnaire surveys, interviews, and the medical records of older patients with leukemia admitted to the Hengyang Medical School from June 2020 to June 2023. The data obtained included participants’ basic demographic information, medical history, leukemia type, family history of leukemia, average monthly family income, pension, and tendency to conceal illness. The Chinese versions of the Social Impact Scale (SIS), Perceived Social Support Scale (PSSS), Self-Rating Anxiety Scale (SAS), and Self-Rating Depression Scale (SDS) were used to assess indicators related to stigma, social support, and mental health status. We used Pearson’s correlation coefficient to analyze the strength and direction of the relationship between the scores of each scale, and regression analysis to explore the factors related to the stigma of older patients with leukemia after diagnosis.

RESULTS

Data from 120 patients with leukemia aged 65-80 years were analyzed. The total score on the SIS and PSSS was 43.60 ± 4.07 and 37.06 ± 2.87, respectively. The SAS score was 58.35 ± 8.32 and the SDS score was 60.58 ± 5.97. The stigma experienced by older leukemia patients was negatively correlated with social support (r = -0.691, P < 0.05) and positively correlated with anxiety and depression (r = 0.506, 0.382, P < 0.05). Age, education level, smoking status, average monthly family income, pension, and tendency to conceal illness were significantly associated with the participants’ level of stigma (P < 0.05). Age, smoking status, social support, anxiety, and depression were predictive factors of stigmatization among older leukemia patients after diagnosis (all P < 0.05), with a coefficient of determination (R²) of 0.644 and an adjusted R² of 0.607.

CONCLUSION

Older patients commonly experience stigmatization after being diagnosed with leukemia. Factors such as age, smoking status, social support, and psychological well-being may influence older patients’ reported experience of stigma.

Key Words: Senile leukemia; Stigma; Social support; Anxiety; Depression; Influencing factors

Core Tip: The most innovative and important finding of this study is that older patients with leukemia commonly experience feelings of stigmatization after diagnosis, which are influenced by factors such as age, smoking status, social support, and psychological status. This study highlights the importance of addressing the psychological well-being and social support that older patients with leukemia receive to mitigate feelings of stigmatization and to improve their overall quality of life.

INTRODUCTION

The data obtained for this study show that the incidence rate of leukemia in China is currently 6.21 per 100000, with a mortality rate of 4.03 per 100000[1]. The age of China’s population is increasing, with over 267 million Chinese citizens currently aged 60 and above. The number of older patients with acute leukemia is also increasing annually[2], making them the core demographic among adults diagnosed with acute leukemia. A leukemia diagnosis is a major blow to patients. Leukemia not only affects patients’ physical health, but it can also cause psychological and social problems. Among the range of potential side effects that follow a leukemia diagnosis, stigma is a common psychological reaction. Stigma refers to the embarrassment or self-doubt that patients often experience in relation to their illness[3,4]. It is a complex issue involving multiple disciplines, including medicine, sociology, and psychology, and has received increasing attention from researchers in recent years.

Extensive research has been conducted into the stigma that occurs around certain diseases such as human immunodeficiency virus (HIV) or acquired immune deficiency syndrome (AIDS) and mental illnesses. In a study by Vrbova et al[5], patients with stable schizophrenia revealed a tendency to choose suicide as a means of escaping the psychological problems they faced, with the increased stigma caused by the illness putting them at greater risk of committing suicide. Clement et al[6] conducted a systematic review of 144 studies on stigma among mental health patients. Their findings revealed the mild-to-moderate impact of stigma on patients’ likelihood of seeking help, with disclosure of the problem being the most common stigma barrier. Nikus Fido et al[7] found that HIV/AIDS patients commonly experience stigma, with educational level and gender being closely related to stigma, and social support being an important influencing factor. Studies have found that stigma can lead to a delay in seeking medical treatment, concealment of disease information, avoidance of social activities, and reduced treatment adherence, thereby affecting patients' recovery and quality of life[8,9]. Stigma can cause older patients with leukemia to experience self-denial, confusion, and helplessness. It can also lead to self-isolation and avoidance of interactions with the outside world, depriving patients of opportunities to connect with family, friends, and other patients with similar experiences, further increasing their emotional burden. These emotional issues can also impact patients' immune systems, making them more susceptible to infection and making their recovery more difficult, thus creating a vicious cycle.

Psychological problems among older patients with leukemia are becoming increasingly prominent. However, limited research has been conducted on the role that stigma plays with regard to these issues. Understanding and recognizing whether older patients experience stigma after being diagnosed with leukemia and conducting in-depth research on the factors that influence stigma can help facilitate the development of more effective methods and strategies. These strategies can in turn help to alleviate the symptoms associated with stigma and enable patients to cope more easily, allowing for more comprehensive support and assistance to be provided to them.

MATERIALS AND METHODS

Patient characteristics

The dataset for this retrospective analysis was derived from clinical data, such as questionnaires, interviews, and medical records filled in by older patients with leukemia admitted to the Hengyang Medical School, University of South China from June 2020 to June 2023. To ensure the consistency and comparability of the subjects, it was necessary to develop inclusion criteria through which to screen patients and determine if they met the requirements of the study. The inclusion criteria were as follows: (1) Patients had been diagnosed with leukemia for the first time and were over 65 years of age, regardless of sex, race, or disease type; and (2) patients were willing to participate in the study and capable of providing informed consent. Patients who did not fit the study’s criteria, or whose condition may have interfered with the results of the study, such as patients with cognitive impairment or severe mental illness, patients with other major diseases or complications, or patients who could not provide valid data were all excluded from participating.

Method

Demographic factors relating to age, sex, marital status, education level, smoking and drinking status, underlying medical history, average monthly family income, retirement pension, type of leukemia, family history of leukemia, and tendency to conceal disease were obtained from the questionnaire survey records. Patients’ reported levels of stigma, social support, and psychological well-being were assessed using Chinese versions of the Social Impact Scale (SIS), Perceived Social Support Scale (PSSS), Self-Rating Anxiety Scale (SAS), and Self-Rating Depression Scale (SDS). The dimensions and scoring methods of these scales are as follows: (1) The SIS consists of 18 items and three dimensions (social rejection, social isolation, and internal stigma). A 4-point Likert scale was used for each item, with responses ranging from "1-strongly disagree" to "4-agree." The total score ranged from 18-72 points, with higher scores indicating a higher level of stigma experienced by patients; (2) the PSSS consists of 12 items and three dimensions (family, friends, and other support). A 7-point Likert scale was used for each item, with responses ranging from "1-strongly disagree" to "7-agree." The total score ranged from 12-84 points, with higher scores indicating better perceived support; and (3) the SAS and SDS each contained 20 questions covering psychological and physiological symptoms of anxiety and depression, such as tension, fear, and worry. A 4-point Likert scale was used for each question, with responses ranging from "1-none or rarely" to "4-frequently or almost always". The total score ranged from 20-80 points, with higher scores indicating more severe anxiety and depression symptoms.

Missing data processing

To minimize the impact of missing data on the results, the following methods were adopted: (1) During data collection, the collected data were carefully examined to ensure optimal data integrity and accuracy; (2) the reasons for any missing data, such as questionnaire errors or losses, were carefully analyzed to ensure that appropriate measures were taken; and (3) for partially missing data, imputation methods such as mean and multiple imputations were employed to handle data filling.

Statistical analysis

The means and standard deviations were calculated to describe the average scores for each scale. Percentages or frequencies were used to determine the proportion or frequency of individuals with different score ranges. Significant differences in scores between different groups (e.g., sex and age groups) were compared using the t-test or analysis of variance (ANOVA) and multiple comparisons were made using the Fisher's least significant difference test. The relationship between the scale scores and other variables was analyzed using Pearson’s correlation. A regression analysis was then conducted to predict the relationship between the scale scores and independent variables. All analyses were performed using SPSS 23.0, with a significance level of α = 0.05.

RESULTS

Clinical characteristics

After the screening was completed, 120 patients aged 65-80 years were enrolled. The majority of the patients had been diagnosed with acute leukemia, of whom 89 (74.2%) reported having no family history of leukemia. The patients’ education level was roughly balanced: 33 patients (27.50%) had a junior high school level education or below, 44 patients (36.67%) had a senior high school/technical secondary school level education, and 43 patients (35.83%) had a college level education or above. In terms of bad habits, 42 patients (35%) smoked and 69 (57.50%) consumed alcohol. The proportion of patients with a per capita monthly family income of 3000-5000 yuan was the largest, accounting for 49 cases (40.83%), while more than half of the patients reported having no pension (Table 1).

Table 1 General demographic data of older patients with leukemia.

Items	Groups	Frequency	%
Age (yr)	65-75	50	41.7
	> 75	70	58.3
Sex	Male	53	44.2
	Female	67	55.8
Marital status	Single	6	5.0
	Married	89	74.2
	Divorced/widowed	25	20.8
Education level	Junior high school and below	33	27.5
	High school or technical secondary school	44	36.7
	College or above	43	35.8
Smoking	No	78	65.0
	Yes	42	35.0
Drinking	No	51	42.5
	Yes	69	57.5
Medical history	No	62	51.7
	Yes	58	48.3
Average monthly family income (CNY)	< 3000	29	24.2
	3000-5000	49	40.8
	> 5000	42	35.0
Pension	No	67	55.8
	Yes	53	44.2
Leukemia type	Chronic	34	28.3
	Acute	86	71.7
Family history	No	89	74.2
	Yes	31	25.8
Tendency to conceal illness	No	47	39.2
	Yes	73	60.8

Stigma

The score for the social exclusion dimension was 13.82 ± 2.41; the score for the social isolation dimension was 7.32 ± 1.33; the score for the internal stigma dimension was 22.47 ± 2.97, and the SIS-total score was 43.60 ± 4.07. These results suggest that patients may face exclusion and isolation from society and may internalize a strong sense of stigma in relation to the disease (Table 2).

Table 2 Social Impact Scale score.

Scale	Item	Score range	Score
Social exclusion dimension	7	7-28	13.82 ± 2.41
Social isolation dimension	3	3-12	7.32 ± 1.33
Internal shame dimension	8	8-32	22.47 ± 2.97
SIS-total	18	18-72	43.60 ± 4.07

SIS: Social Impact Scale.

Social support, mental health status

The score for the family support dimension was 14.23 ± 1.83; the score for the friend support dimension was 12.05 ± 1.53; the score for the other support dimension was 10.78 ± 1.91; and the PSSS-total score was 37.06 ± 2.87. The SAS score was 58.35 ± 8.32 points, and the SDS score was 60.58 ± 5.97 points. These results suggest that older patients with leukemia experience a moderate level of support from family, friends, and others, and that the overall level of social support they receive is relatively low. However, the scores corresponding to anxiety and depression in the patients’ self-evaluation were also higher, meaning further attention and intervention are needed (Table 3).

Table 3 Perceived Social Support Scale, Self-Rating Anxiety Scale, and Self-Rating Depression Scale scores.

Scale	Item	Score range	Score
Family support dimension	4	4-28	14.23 ± 1.83
Friend support dimension	4	4-28	12.05 ± 1.53
Other support dimension	4	4-28	10.78 ± 1.91
PSSS-total	12	12-84	37.06 ± 2.87
SAS-total	20	20-80	58.35 ± 8.32
SDS-total	20	20-80	60.58 ± 5.97

PSSS: Perceived Social Support Scale; SAS: Self-Rating Anxiety Scale; SDS: Self-Rating Depression Scale.

Single factor analysis of stigma

The classification of different demographic and disease-related data variables were used as independent variables, and stigma was used as the dependent variable for a single-factor analysis. There were statistically significant differences in patients’ age, education level, smoking status, family monthly income per capita, pension, and disease concealment tendency (P < 0.05) (Table 4).

Table 4 Univariate analysis.

Variable	n	SIS-total	t/F	P value
Age (a)			-4.006	< 0.05
65-75	50	41.94 ± 3.61
> 75	70	44.79 ± 3.99
Sex			-1.030	0.305
Male	53	43.17 ± 3.78
Female	67	43.94 ± 4.29
Marital status			1.053	0.352
Single	6	42.00 ± 3.90
Married	89	43.90 ± 4.28
Divorced/widowed	25	42.92 ± 3.23
Education level			4.231	0.0171
Junior high school and below	33	42.37 ± 3.27
High school or technical secondary school	44	43.73 ± 3.94
College or above	43	45.03 ± 4.75
Smoking			-3.865	< 0.05
No	78	42.60 ± 3.81
Yes	42	45.45 ± 3.93
Drinking			-1.393	0.166
No	51	43.00 ± 3.82
Yes	69	44.04 ± 4.22
Medical history			0.259	0.796
No	62	43.69 ± 4.40
Yes	58	43.50 ± 3.72
Average monthly family income (CNY)			4.522	0.0131
< 3000	29	42.48 ± 3.81
3000-5000	49	43.53 ± 3.72
> 5000	42	45.34 ± 4.51
Pension			3.176	0.002
No	67	44.61 ± 4.25
Yes	53	42.32 ± 3.47
Leukemia type			0.675	0.501
Chronic	34	44.00 ± 3.87
Acute	86	43.44 ± 4.16
Family history			0.286	0.776
No	89	43.66 ± 4.23
Yes	31	43.42 ± 3.64
Tendency to conceal illness			-2.154	0.033
No	47	42.62 ± 3.72
Yes	73	44.23 ± 4.19

¹The multiple comparison result of the least significant difference test. Patients’ reported history of underlying diseases refers to diseases such as diabetes, hypertension, and hyperlipidemia. SIS: Social Impact Scale.

Correlation analysis

Pearson’s correlation analysis showed that social support was negatively correlated with stigma (r = -0.691, P < 0.05), and anxiety and depression were positively correlated with stigma (r = 0.506, 0.382, P < 0.05) as shown in Figure 1.

Figure 1 Correlation analysis of patients’ reported experience of stigma alongside social support, anxiety, and depression. A: Social support; B: Anxiety; C: Depression.

Multiple linear regression analysis

Stigma was used as the dependent variable, and the variables of age, education level, smoking status, family monthly income per-capita, pension, disease concealment tendency, social support, anxiety, and depression were all subjected to regression analysis. A normality test was performed during the analysis, as was a residual analysis of the fitted model. The residuals followed a normal distribution. The assignments of each variable and dummy variable are presented in Table 5.

Table 5 Independent variable and dummy variable assignment method.

ID	Variable	Assignment
X01	Age (a)	0 = 65-75, 1 ≥ 75
X02	Education level	Junior high school and below (Z1 = 0, Z2 = 0, Z3 = 0); High school or technical secondary school (Z1 = 0, Z2 = 1, Z3 = 0); College or above (Z1 = 0, Z2 = 0, Z3 = 1)
X03	Smoking	0 = No, 1 = Yes
X04	Average monthly family income (CNY)	> 5000 (Z1 = 0, Z2 = 0, Z3 = 0); 3000-5000 (Z1= 0, Z2= 1, Z3 = 0); < 3000 (Z1 = 0, Z2 = 0, Z3 = 1)
X05	Pension	0 = No, 1= Yes
X06	Tendency to conceal illness	0 = No, 1 = Yes
X07	Social support	Actual measuring
X08	Anxiety	Actual measuring
X09	Depression	Actual measuring

Before entering the regression equation, the variables were subjected to a multicollinearity diagnosis. The variance inflation factor ranged from 1.095 to 1.469, suggesting that the respective variables had no collinearity problems and could be subjected to regression analysis. The results showed that age, smoking status, social support, anxiety, and depression entered the linear regression equation and were predictors of stigma in older patients after leukemia diagnosis (all P < 0.05). The determination coefficients were R² = 0.644 and the adjusted R² = 0.607 (Table 6).

Table 6 Multivariate linear regression analysis.

Variable	Group	β	SE	β’	t	P value
Constant		55.607	5.278	——	10.535	< 0.05
Age (a)		1.442	0.494	0.175	2.918	0.004
Education level	Junior high school and below	0.604	0.632	0.066	0.955	0.342
	High school or technical secondary school	0.227	0.572	0.027	0.396	0.693
Smoking		1.479	0.533	0.174	2.775	0.007
Average monthly family income (CNY)	< 3000	0.938	0.654	0.099	1.433	0.155
	3000-5000	0.531	0.565	0.064	0.940	0.349
Pension		-0.160	0.514	-0.02	-0.311	0.757
Tendency to conceal illness		0.885	0.514	0.107	1.721	0.088
Social support		-0.670	0.097	-0.472	-6.873	< 0.05
Anxiety		0.079	0.034	0.162	2.351	0.021
Depression		0.093	0.043	0.137	2.192	0.031

R = 0.802, R² = 0.644, △R² = 0.607, F = 17.733, P < 0.05.

DISCUSSION

The scores for the three dimensions of SIS were 13.82 ± 2.41 points, 7.32 ± 1.33 points, and 22.47 ± 2.97 points, with a total score of 43.60 ± 4.07 points. This suggests that older patients with leukemia may face social exclusion and isolation and may also experience strong feelings of stigma and disease-related stigma. This may be attributable to several factors, the first of which is social cognition and prejudice. Leukemia is considered to be a serious disease that is strongly associated with death. Therefore, patients may feel themselves labeled as being "sick," and may subsequently face discrimination and exclusion from society. Social cognition and prejudice can lead to feelings of stigma and embarrassment[10]. The second potential reason concerns the discomfort and side effects that result from leukemia treatment. Leukemia treatment, which can include chemotherapy, radiation therapy, and bone marrow transplantation, is often a challenging process[11,12]. These treatments can produce side effects and physical discomfort, for example, nausea, hair loss, and fatigue. Patients anticipate experiencing physical image barriers and declining bodily functions, which can lead to feelings of stigma and embarrassment, further intensifying their sense of stigma. Finally, older leukemia patients experience significant changes in terms of their quality of life. The diagnosis and treatment of leukemia can have a significant impact on patients' lives. Patients may require frequent medical checkups and treatments that disrupt and limit their daily lives. In Chinese culture, family expectations and pressures have a significant influence on individuals[13]. These changes may cause patients to feel a sense of shame and to lose their self-esteem, leading to further stigmatization. Hence, similarly to the results recorded in previous studies[5-7], most patients in this study reported experiencing varying levels of stigma. A study of patients with different types of cancer found that disease-related stigma was prevalent and was associated with factors such as sex, age, education level, and level of social support[14]. Our findings also indicated that the level of stigma experienced by older leukemia patients was comparatively lower than that of breast cancer patients (55.20 ± 12.15 points)[15] and oral cancer patients (50.17 ± 21.24 points)[16]. This may be related to societal cognition and acceptance, changes in appearance and image, and the influence of sex and gender roles.

The formation of disease-related stigma is complex and involves factors such as negative social evaluation, patients’ own lack of understanding, personality traits, family support, and societal care. One study found that stigma in cancer patients was related to the personality traits of individual patients, with patients with more introverted, neurotic, and depressive tendencies being more prone to experiencing disease-related stigma[17]. Another study found that family support and societal care significantly alleviated patients' disease-related stigma, improved their quality of life, and enhanced their psychological well-being[18].

The correlation analysis conducted in this study further supported these findings, revealing a positive correlation between anxiety, depression, and disease-related stigma and a negative correlation between social support and disease-related stigma. Anxiety and depression can make patients feel discouraged and hopeless, and cause them to engage in self-blame with regard to their illness, thereby exacerbating disease-related stigma[19]. These negative emotions can make patients overly sensitive to judgment and criticism from others, further deepening their sense of perceived stigmatization. Social support can provide emotional and informational support as well as practical assistance[20,21]. Together, this can help patients to cope with the difficulties and challenges that accompany a leukemia diagnosis and the resulting treatment. Such support can decrease feelings of loneliness, helplessness, and self-blame, thereby reducing disease-related stigma.

Linear regression analysis revealed that both age and smoking status were predictors of stigmatization in older patients with leukemia after diagnosis. Among these factors, age may have the greatest impact on stigma in older patients with leukemia. Liu et al[22] also emphasized this point in their study on the stigma experienced by patients with lung cancer. Leukemia treatment often requires significant medical resources and financial investment[23,24]. Thus, patients may be concerned that their illness will impose a burden on their families and society as a whole in terms of medical resources and finances. Older patients may also feel that they should be enjoying retirement and a peaceful life rather than facing a serious illness. It is worth noting that only 35.00% of patients reported having a monthly household income in excess of 5000 yuan, and that 55.83% of patients reported not having a pension, both of which are strong indicators of economic difficulties. Additionally, older adults may have limited knowledge and information about leukemia, which can create more doubts and anxieties about the disease, thereby increasing older patients’ perception of disease-related stigma. Smoking is an unhealthy lifestyle habit that may be associated with an increased risk of developing leukemia[25,26]. Upon being diagnosed with leukemia, patients may perceive their smoking habit to be one of the causes of their disease, leading to guilt and self-blame, which can further exacerbate their perception of disease-related stigma. In this study, social support, anxiety, and depression were identified as predictive variables. Social support had a positive impact on reducing stigma among older patients with leukemia, whereas anxiety and depression had the opposite effects. As mentioned earlier, social support can be further categorized as being instrumental or emotional[20,21], with both forms of support being crucial for patients. Patients who lack social support may feel more isolated and ashamed. Negative emotions, such as anxiety and depression, can increase patients' level of self-denial and perception of stigma regarding their condition.

A number of coping strategies can be proposed in response to the factors identified as influencing disease-related stigma in older patients with leukemia. Providing detailed information and knowledge about leukemia to older patients, such as by emphasizing that the development of leukemia is not solely related to smoking but also to other genetic, environmental, and health factors may help to reduce patients' excessive self-blame for their smoking behavior and decrease their associated disease-related stigma. Establishing good communication and trust with patients, listening to their concerns and the emotions they are experiencing, and providing appropriate psychological support are other useful coping strategies. This can include providing emotional support, guiding patients to seek professional psychological counseling, or encouraging them to join support groups. Helping patients to find and join relevant leukemia support groups or organizations can also enable them to share their experiences and to receive emotional support from other patients. Finally, patients can communicate with their families and social organizations to seek economic support and assistance. Medical expenses and insurance matters should be discussed simultaneously with the relevant healthcare team to assist in alleviating patients’ financial burden.

Advantages and limitations

This study has the following advantages: (1) It considers multiple factors that may influence patients’ perceived sense of stigmatization, including age, smoking status, alcohol consumption, average monthly household income, pension, tendency to conceal illness, level of social support, anxiety, and depression. This enables us to develop a more comprehensive understanding of the impact of these factors on patients’ sense of stigmatization; (2) this study included older patients with leukemia from various socioeconomic backgrounds and age groups, thereby improving the overall representativeness and generalizability of the study results; and (3) this study identified a number of coping strategies for helping patients to deal with their own sense of stigmatization. These strategies can provide practical assistance and guidance to patients. However, the study also has some notable limitations: (1) The study only included specific types of older leukemia patients from specific regions, so the results may not be generalizable; and (2) the assessment of stigma in this study may have been based on patients’ own subjective feelings, as the study lacked more objective indicators or measurement tools.

CONCLUSION

Older patients with leukemia may experience strong feelings of stigmatization and disease-related stigma influenced by various factors. By gaining a deeper understanding of the formation of and factors influencing disease-related stigma, we can provide more comprehensive and effective psychological support and interventions for older patients. The results of this study also contribute to raising awareness and understanding of older patients with leukemia among healthcare teams and the public in general, promoting the need for greater social support and assistance.