Illness perception characteristics and influencing factors in adult patients with myasthenia gravis in China

5.1 Illness perception in patients with myasthenia gravis (MG)

Increasingly more patients are diagnosed with MG due to advances in medical diagnostics and national policy requirements. The results of this study showed that patients with MG had a negative illness perception; therefore, attention should be paid to evaluating illness perception in patients. CIPQ-R consequence and emotional representation scores in patients were 18.58 ± 3.57 and 20.80 ± 4.56, respectively, which were higher than those in a study by Gong et al. (2020). Gong et al. assessed illness perception in 98 patients with epilepsy, with consequence and emotional representation scores of 17.41 ± 5.22 and 21.73 ± 5.79, respectively. Our findings show that patients with MG have more negative feelings than patients with chronic neurological disorders, are unable to integrate into society and assume corresponding social roles, and believe that their illness has a huge impact on their lifestyle and health, which increases the emotional effect of MG on the patient. Our findings are consistent with findings from Vitturi et al. (2021), who surveyed the psychosocial functioning of patients diagnosed with MG. Vitturi et al. found that the majority of the patients surveyed experienced a decrease in occupational functioning, had limited financial support outside of previous employment, and had the perception of having a limited social support system.

Personal control and treatment control scores in our patients were 19.98 ± 3.37 and 18.09 ± 1.52, respectively, which were lower than those in studies containing patients with chronic health conditions (Ji et al., 2014; Cao et al., 2007)). Ji et al. investigated 60 patients with ischemic stroke and obtained personal control and treatment control scores of 21.45 ± 3.08 and 18.88 ± 2.53, respectively. Cao et al. conducted a study among 87 patients with chronic hepatitis B virus infection. Personal control and treatment control scores were 20.64 ± 3.68 and 18.26 ± 3.01, respectively. These findings illustrate that individuals have limited means of obtaining disease-related knowledge, have lower satisfaction towards treatment results, lack clear disease awareness, and have poor self-confidence and disease control confidence. Compared with the results of disease identity, timeline (acute/chronic), consequence, timeline cyclical, and emotional representation in patients with type 2 diabetes in a study by Li et al. (2020), our patients with MG felt that the disease duration was long, that they will not substantially improve with time, held pessimistic views regarding their future, and had greater negative illness perception, and higher psychological stress. Negative emotions have an enormous impact on disease progression, prognosis, and quality of life (de Rooij et al., 2018; Minshall et al., 2020). Therefore, there is an urgent need to improve the illness perception of patients with MG.

5.2 Factors affecting illness perception of patients with MG

Illness perception scores represent different beliefs that patients have towards disease. The results of this study showed that educational level is an important factor in illness identity among patients with MG. Illness identity mainly refers to an individual's perception and understanding of disease symptoms and of stigma (Jiang et al., 2010). Patients with lower educational levels tend to be more affected by stigma regarding the disease and have poorer understanding of their disease symptoms. The reason for this is that patients who are less educated have fewer means of obtaining disease-related information as well as limited acceptance and understanding of such information, resulting in poorer awareness of disease symptoms. Similar conclusions were reached in a Chinese study on illness perception in patients with chronic prostatitis and ischemic stroke (Jiang et al., 2010). Thus, there is a need to improve disease-related knowledge for both the patient and their family and to develop different types of health education materials for patients according to educational level. The education protocol should be progressively revised based on differences in patients’ understanding of disease to improve understanding and knowledge among patients and family members.

The results of this study showed that coping style and marital status are important factors associated with timeline (acute/chronic) in patients with MG. Timeline (acute/chronic) refers to an individual's belief regarding the relatively long disease duration (Jiang et al., 2010). In China, there are no studies to date showing a correlation between marital status and timeline (acute/chronic). The results of this study showed that married patients firmly believe that MG is a transient process. Marriage is an important component of social support, and poor social support tends to lead to incorrect understanding of the disease duration among patients (Hoseini et al., 2016; Nedjat-Haiem et al., 2020; Recto & Champion, 2020). A possible reason for this may be that married patients have stronger social and family support than unmarried individuals. Negative coping style leads patients to believe that MG is a long-term disease and a long disease duration exacerbates negative emotions in patients. High medical costs place an immense burden on patients’ families. At the same time, impaired mobility causes psychological and financial stress for patients, causing them to feel guilt, self-blame, and other negative emotions. This leads to anxiety and depression and a pessimistic view in the patient. Hence, coping style and negative emotions mutually affect each other. Therefore, clinical staff should pay greater attention to this population to increase social support in patients, conduct further investigations to analyze the causes of negative coping responses, carry out target intervention together with the patient's family, and correct erroneous disease knowledge.

The higher the illness correlation factor, the better the patient's understanding of the disease. The results of this study showed that disease duration and coping styles are factors associated with illness coherence. Illness correlation reflects an individual's understanding of the disease itself (Jiang et al., 2010). The longer the disease duration, the greater the patient's disease understanding. Patients with MG tend to experience relapses and undergo long-term medical treatment, so they have a good understanding of the disease. Patients with negative coping styles have a higher illness correlation score. As MG has a long disease duration, patients with better understanding of the disease tend to understand that this disease is a chronic neuroimmune disorder with low probability of cure, and they will have to live with the disease for the rest of their life. This worsens negative emotions in the patient, resulting in a negative coping style. Additionally, as medical technology advances, disease understanding deepens. The 2020 Chinese MG diagnosis and treatment guidelines point out that the best treatment status is to achieve minimal disease status or better and grade ≤ 1 treatment-related side effects (Chang, 2021), for patients to be able to live more harmoniously with the disease for a long period of time and achieve a body–disease equilibrium. Most patients do not have good routes through which to obtain the latest medical knowledge and public information dissemination is not ideal. Therefore, national health authorities can develop information dissemination platforms such as public WeChat accounts, television ads, and video clips, as well as relevant guidelines for medical professionals, to increase public awareness about MG.

In this study, we found that coping style is the main factor associated with emotional representation. Emotional representation mainly reflects an individual's awareness of abnormal negative emotions after developing a disease (Jiang et al., 2010). Patients with a negative coping style have higher emotional representation scores, indicating that they have more negative emotions. Negative coping styles increase negative emotions in patients, such as depression and anxiety, which is consistent with previous studies (Ji et al., 2016). A study on illness perception in patients with epilepsy found that negative emotions affect patients’ social role and quality of life. This suggests that medical professionals must apply different measures based on the patient's condition to decrease the emotional representation score.

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