Assessment of the Knowledge, Attitudes, Anxiety, and Coping Strategies of Pediatric Patients and Parents after Leukemia Diagnosis in Türkiye

To the Editor,

There is limited information on the issue of cancer disclosure to pediatric patients and their parents because most studies on disclosure have been focused on adult cancer patients [1,2,3,4,5,6,7,8,9]. Many pediatric leukemia specialists are unaware of whether pediatric patients know their diagnosis. This preliminary study evaluated how a leukemia diagnosis may affect the knowledge, attitudes, anxiety, and coping strategies of pediatric patients and their parents.

A total of 200 participants, including 100 children and 100 parents (n=70 mothers; n=30 fathers) completed questionnaires about the children’s leukemia diagnosis. Most items were designed as questions with short answers (yes/no) (Table 1). All children were over the age of 7 years at the time of the survey, and 81% had completed the leukemia protocol while the remaining 19% were still receiving chemotherapy. The relevant institutional review board approved the study. Data were analyzed using IBM SPSS Statistics 22.0.

Table 1. Survey to evaluate the knowledge and attitudes of study participants about the leukemia diagnosis.

All patients were referred to our center from different geographic regions of Türkiye. Only 17% of the parents had middle school or high school education, while 83% were uneducated or had only primary school education. Sixteen (16%) of the 100 participating pediatric patients declared that they were unaware of the leukemia in the course of completing the survey. Thirteen of those participants (82%) were younger than 7 years old and three (18%) were older than 7 years at the time of diagnosis. All of these 16 patients responded to the survey by stating that they wished they had known about their leukemia diagnosis. The remaining 84 (84%) patients stated that they were aware of the leukemia at the time of diagnosis. Nine of those patients (10%) responded to the survey by stating that they would have preferred not to have known about the leukemia diagnosis. These nine patients were over 12 years old at the time of diagnosis. They received antidepressant treatment and psychological support. Four (45%) of them were receiving chemotherapy at the time of the survey. Anxiety about disease recurrence (92% vs. 73%) or chemotherapy side effects (57% vs. 12%) was significantly more likely among parents than patients (p<0.05). The rate of anxiety among parents was 4.09 times higher for disease recurrence and 5.53 times higher for chemotherapy side effects compared to the rate of anxiety among patients.

Most leukemia specialists accept some parental requests for non-disclosure of leukemia to children at diagnosis. Additionally, they often choose not to disclose the diagnosis to younger children because they assume it will be explained by the parents once the child is older. The main obstacles that parents in Türkiye face in disclosing a leukemia diagnosis to a child at an appropriate time are related to the Turkish family structure and the protective attitudes and behaviors of Turkish parents toward their children. The parents of the patients in our study originated from various geographical regions in Türkiye and had different educational backgrounds. Furthermore, the parents were more worried about the prognosis and side effects of chemotherapy. The survey’s main limitation was the absence of questions about support from other family members. Further research is required. We conclude that psychological support for coping with anxiety should be included in leukemia protocols for both adolescents and parents. Children’s leukemia knowledge must be updated at older ages when children are diagnosed before 7 years of age.