Perspectives of Pediatric Patients, Parents, and Healthcare Providers on the Disclosure of a Leukemia Diagnosis and the Investigation of Internalizing Symptoms in Children with Leukemia

Research Article

Ann Hematol Onco. 2023; 10(3): 1427.

Perspectives of Pediatric Patients, Parents, and Healthcare Providers on the Disclosure of a Leukemia Diagnosis and the Investigation of Internalizing Symptoms in Children with Leukemia

Yusuf Yasar¹; Zuhre Kaya¹*; Esra Guney²; Serap Kirkiz¹; Ulker Kocak¹

1Department of Pediatric Hematology, Faculty of Medicine, Gazi University, Ankara, Turkey

2Department of Child and Adolescent Psychiatry, Faculty of Medicine, Gazi University, Ankara, Turkey.

*Corresponding author: Kaya Zuhre Department of Pediatric Hematology, Faculty of Medicine, Gazi University, Tip Fakultesi, Cocuk Sagligi ve Hastaliklari Anabilim Dali, Cocuk Hematoloji Bilimdali, Besevler 06500, Ankara, Turkey. Phone: +903122026025 E-mail: zuhrekaya@gazi.edu.tr

Received: April 08, 2023 Accepted: May 27, 2023 Published: June 03, 2023

Abstract

Background: The purpose of this study was to examine study participants’ knowledge, attitudes, anxiety, and coping strategies following a leukemia diagnosis.

Study Design: The 350 participants included 100 pediatric patients, 100 parents, and 150 healthcare providers. The survey was filled out by all participants. Patients’ and Parents’ perceptions of their children’s anxiety levels were also evaluated using the Revised Child Anxiety and Depression Scale.

Results: In total, 84 pediatric patients were aware of their leukemia diagnosis, but the remaining 16 were not at the time of the survey. Thirteen (82%) of the 16 patients were under the age of seven at the time of diagnosis. Parents and health care providers strongly agreed that leukemia diagnosis should be disclosed directly to children. Compared with healthcare providers, parents were significantly more likely to opt for disclosure after starting chemotherapy by the parents in the doctor’s office (p<0.05). Parent’s perceptions of their children’s anxiety levels were significantly higher than patients’ (p<0.05). Healthcare providers responded to the survey that 32% of the pediatrician, 16% of nurses, and 86% of interns received training on delivering bad news.

Conclusions: Our research shows that there is no agreement among healthcare providers and patients’ parents about who, when, and where to inform children of a leukemia diagnosis. The findings also highlight the importance of reinforming children diagnosed at less than 7 years when they are older. Additionally, delivering bad news training to healthcare providers and providing psychological support to parents and adolescents have a positive impact.

Keywords: Leukemia diagnosis; Anxiety; Children; Health care provider; Parents

Introduction

A recent comprehensive review and numerous systematic studies focused on cancer-specific information and communication for patients, but there is still no consensus on the appropriate person, time, and place to inform patients and their relatives of a cancer diagnosis and prognosis [1-3]. Most information to date has been obtained from adult studies [4-14]. These have indicated that, for adult patients, good communication between patient and physician enhances the quality of life and reduces anxiety levels during cancer diagnosis and treatment. The cornerstone of this communication is, to tell the truth about the patient's diagnosis and prognosis [4,15]. Regardless, delivering bad news about diagnosis and prognosis to cancer patients is challenging for many reasons. The most important of these are pediatric age, knowledge levels, attitudes of the patient’s relatives, cultural and religious differences, and concern that the psychological devastation caused by the news may delay treatment. However, data on issues such as informing children, communicating with parents, and delivering bad news to healthcare providers about a leukemia diagnosis are scarce.

The aim of this study was to evaluate the impact of leukemia diagnosis on Turkish pediatric patients, their parents, and healthcare providers.

Materials and Methods

This cross-sectional study was carried out in our leukemia center. The Institutional Review Board approved the investigation, and patients or their parents gave informed consent.

Study Population

Three groups of participants were enrolled: pediatric leukemia patients (n=100), patients' parents (n=100), and healthcare providers (n=50). A total of 100 consecutive pediatric acute leukemia patients were enrolled. At the time of diagnosis, hematology specialists obtained routine institutional consent and assent forms from older patients (>12 years old) and parents of all pediatric patients. Only one parent (mothers; n=70, fathers; n=30) who accompanied their children during the chemotherapy period completed the survey. The healthcare providers were divided into three subgroups: pediatricians (n=50), interns (n=50), and nurses (n=50). Patients with lymphoma or solid tumors, or those over the age of 18, were excluded from the study.

Study Design

A survey was designed based on similar studies in the literature [7-14] as well as feedback from patients, parents, and healthcare providers. The survey's primary outcomes focused on how healthcare providers, children, and their parents perceived a leukemia diagnosis. The secondary outcomes assessed the anxiety and coping strategies of children, and their parents following a leukemia diagnosis. The importance of training for healthcare professionals on delivering bad news was the third outcome.

Study participants were invited to respond, and each completed this survey in written form for approximately 15-20 minutes in a quiet room. All pediatric patients were over the age of seven at the time of the survey. Of them, eighty-one percent had completed the leukemia protocol, while the remaining 19% were still receiving chemotherapy. Parents assisted children under the age of 12 in completing the survey. Most question items were designed as short answers (Yes or No), and some required detailed explanations (Table 1). The questions were composed so as to assess the knowledge level, attitudes, anxiety, and coping strategies of the Turkish participant groups after a leukemia diagnosis. Patients’ and Parents’ anxiety levels were also evaluated using the Revised Child Anxiety and Depression Scale. This scale was an internationally validated, standardized, and reliable anxiety and depression assessment tool [16]. The parents’ version was completed by parents, while the self-reported version was administered to patients (7-18 years of age). This survey contains 47 questions grouped under six items: Separation Anxiety, Social Phobia, Obsessive-Compulsive Disorder, Panic Disorder, Generalized Anxiety Disorder, and Major Depressive Disorder. A total score of more than 65 indicates that the individuals suffer from significant anxiety and depression. The Parents’ version evaluates parent reports of their child's anxiety and depression symptoms across the same contexts.