Caring for a child with cancer during COVID-19 pandemic: an assessment of the parents' perception and stress level.

Background: The emergence of COVID-19 pandemic has led to heightened fear and uncertainty among parents of children with cancer. This study was conducted to evaluate the parental perceptions toward effects of COVID-19 infection to children with cancer, determine their stress level and factors contributing to high stress level during the pandemic. Methods: This cross-sectional study was conducted in three paediatric oncology centres in Malaysia from September 2020 until December 2022. A total of 167 parents were recruited. Parents completed a set of questionnaires to assess their perception on effect of COVID-19 infection to children with cancer and COVID Stress Scale (CSS) to assess the parents' stress level. Results: Patients' mean age at study entry was 8.75 years (SD 4.38). Ninety-one (54.5%) patients were still on active treatment. More than 80% of the parents obtained information regarding COVID-19 infection from mass media and social networking. Fear of their children contracting COVID-19 infection was high especially among patients who were still on treatment. Forty-nine (29.3%) parents were significantly affected by the pandemic leading to loss of job or monthly income. Twenty-nine (17.4%) patients required treatment modification during the pandemic. The median total score for CSS was 78.0 (IQR 25th 64.0; 75th 95.0). Ninety-one (54.5%) respondents were very/extremely stressed based on the CSS scores. Components with high scores were xenophobia (median score 18.0; IQR 25th 13.0, 75th 22.0), fear of danger (median score 17.0; IQR 25th 14.0, 75th 20.0) and contamination fears (median score 16.0; IQR 25th 12.0, 75th 19.0). Lower household income was associated with higher stress level (p = 0.006). Conclusion: Our study demonstrated high awareness regarding risk of COVID-19 infection among parents of oncology children. Half of the parents had high stress level, with low household income identified as a factor associated with high stress level.

Neuropsychological task outcomes among survivors of childhood acute lymphoblastic leukemia in Malaysia.

This study intended to explore the neuropsychological ramifications in childhood acute lymphoblastic leukemia (ALL) survivors in Malaysia and to examine treatment-related sequelae. A case-control study was conducted over a 2-year period. Seventy-one survivors of childhood ALL who had completed treatment for a minimum of 1 year and were in remission, and 71 healthy volunteers were enlisted. To assess alertness (processing speed) and essential executive functioning skills such as working memory capacity, inhibition, cognitive flexibility, and sustained attention, seven measures from the Amsterdam Neuropsychological Tasks (ANT) program were chosen. Main outcome measures were speed, stability and accuracy of responses. Mean age at diagnosis was 4.50 years (SD ± 2.40) while mean age at study entry was 12.18 years (SD ± 3.14). Survivors of childhood ALL underperformed on 6 out of 7 ANT tasks, indicating poorer sustained attention, working memory capacity, executive visuomotor control, and cognitive flexibility. Duration of treatment, age at diagnosis, gender, and cumulative doses of chemotherapy were not found to correlate with any of the neuropsychological outcome measures. Childhood ALL survivors in our center demonstrated significantly poorer neuropsychological status compared to healthy controls.

Development and user evaluation of an online caregiver education resource for Malaysian parents of children with leukemia or lymphoma.

Objective: Malaysian parents of children diagnosed with leukemia or lymphoma stand to benefit from a comprehensive Malay-language online resource, complementing existing caregiver education practices. This study aimed to develop and assess the efficacy of e-Hematological Oncology Parents Education (e-HOPE), an online caregiver education resource in Malay, designed to enhance the knowledge of parents with children diagnosed with leukemia or lymphoma in Malaysia. Methods: A user profile and topic list were established based on previous needs analysis studies. Content was developed for each identified topic. An expert panel assessed the content validity of both informational content and activity sections. Subsequently, the contents were presented via a learning management system to parents of children newly diagnosed with leukemia or lymphoma. Parents evaluated the quality of e-HOPE using the Website Evaluation Questionnaire (WEQ) after an 8-week period. Results: The scale content validity index (S-CVI/Ave) achieved 0.996 for informational content and 0.991 for the activity section. Sixteen parents provided evaluations of e-HOPE after an 8-week usage period. Mean WEQ scores for various dimensions ranged from 4.23 for completeness to 4.88 for relevance. Conclusions: E-HOPE was meticulously designed and developed to offer Malaysian parents a Malay-language resource complementing current caregiver education practices. It exhibited strong content validity and received positive user ratings for quality. Further assessment is warranted to evaluate its effectiveness in supporting parents of children with leukemia or lymphoma. The resource is anticipated to enhance information accessibility and support for Malaysian parents facing hematological cancers in their children. Trial registration: Clinicaltrials.govNCT05455268.

Parents of children with cancer require health literacy support to meet their information needs.

BACKGROUND: Timely and relevant information helps parents to cope when a child is diagnosed with cancer. However, obtaining and understanding information is not a straightforward process for parents. OBJECTIVES: This article aims to explain paediatric cancer parents' information behaviour related to the care of their child. METHODS: Qualitative in-depth interviews were conducted with fourteen Malaysian paediatric cancer parents and eight healthcare professionals who worked with paediatric cancer patients. Reflexivity and inductive approaches were used to interpret the data to identify meaningful themes and subthemes. RESULTS: Three themes about how paediatric cancer parents interact with information emerged: Acquiring information, internalising information, and using information. Information may be actively sought or passively acquired. Cognitive and affective aspects influence how information is internalised into meaningful knowledge. Knowledge then leads to further action including further information gathering. CONCLUSION: Paediatric cancer parents need health literacy support to meet their information needs. They require guidance in identifying and appraising suitable information resources. Development of suitable supporting materials is needed to facilitate parents' ability to comprehend information related to their child's cancer. Understanding parents' information behaviour could assist healthcare professionals in providing information support in the context of paediatric cancer.

Development and Validation of a Caregiving Knowledge Questionnaire for Parents of Pediatric Leukemia and Lymphoma Patients in Malaysia.

Introduction Validated tools to measure caregiving knowledge among parents of children with hematological cancers are needed to measure the clinical outcome of caregiver interventions. This study reports the development and validation of the Hematological Oncology Parents Education Caregiving Knowledge Questionnaire (HOPE-CKQ) among Malaysian parents of pediatric leukemia and lymphoma patients. Methods Initially, 60 items on caregiving knowledge were developed based on a qualitative needs assessment study. Content validity was evaluated using item content validity index (I-CVI) and scale content validity index (S-CVI/Ave). Parents of pediatric leukemia and lymphoma patients were invited to complete the 60-item version of the HOPE-CKQ. Exploratory factor analysis (EFA) using polychoric correlation resulted in an 18-item version of HOPE-CKQ. Confirmatory factor analysis (CFA) was used to verify the factor structure. Known-group validity was tested by comparing the scores among different levels of parent education. Results The I-CVI ranged from 0.83 to 1.00 whereas the S-CVI/Ave was 0.99, indicating good content validity. A total of 167 complete responses were analyzed for factor analysis. EFA using polychoric correlations resulted in a single-factor structure consisting of 18 items. CFA confirmed that the 18-item single-factor HOPE-CKQ model had a good fit for the data. The internal consistency reliability was good (α=0.80). Parents with tertiary education level had higher caregiving knowledge (M=12.61, SD=3.37) compared to parents with secondary education and below (M=10.33, SD=3.80) (t=3.58, p<0.001). Conclusions The 18-item HOPE-CKQ is valid and reliable for use to measure caregiving knowledge among pediatric leukemia and lymphoma parents. This tool may be considered to measure caregiving knowledge in future preventive and intervention programs.

Role of Serum Ferritin in Predicting Outcomes of COVID-19 Infection Among Sickle Cell Disease Patients: A Systematic Review and Meta-Analysis.

Patients with sickle cell disease (SCD) are at higher risk of getting severe COVID-19 infection. This systematic review and meta-analysis aimed to determine the role of serum ferritin in predicting ICU admission and mortality among patients with SCD following COVID-19 infection. A systematic search was conducted in PubMed, Scopus, Web of Science, Embase, WHO COVID-19 database, ProQuest, and Cochrane Library for articles published between 1st December 2019 to 31st November 2021. Methodological quality was assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. Eleven articles (7 cohorts and 4 case series) were included in this review. Pooled mean serum ferritin level on admission was 1581.62 ng/mL while pooled proportion of ICU admission and mortality were 0.10 (95% CI 0.06; 0.16, prediction interval 0.04; 0.23, p = 0.29, I 2 = 17%) and 0.07 (95% CI 0.05; 0.11, prediction interval 0.04; 0.12, p = 0.68, I 2 = 0%) respectively. Meta-regression showed that serum ferritin did not predict for both ICU admission (regression coefficient = 0.0001, p = 0.3523) and mortality (regression coefficient = 0.0001, p = 0.4029). Our analyses showed that serum ferritin may not be a useful marker to predict the outcomes of COVID-19 infection among patients with SCD. More data are required to identify a reliable tool to identify patients with SCD who are at risk of getting severe COVID-19 infection. Systematic Review Registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=287792, PROSPERO Registration: CRD42021287792.

Information needs of Malaysian parents of children with cancer: A qualitative study.

Objective: Informational support is an important pillar of psychosocial care for parents of children with cancer. Understanding the information needs of these parents may improve the provision of family-centered informational support. This paper aims to explore the information needs of Malaysian parents whose children have cancer. Methods: This qualitative study was conducted among 14 parents of children with cancer and 8 healthcare providers. The parents were recruited from two urban pediatric oncology centers in Malaysia. Healthcare providers were recruited from these centers, as well as from community-based palliative care providers. In-depth interviews were conducted based on semi-structured topic guides, audio-recorded, and transcribed for thematic analysis using elements of the grounded theory approach. Results: Analysis revealed three themes of information needs, which were: "interaction with the healthcare system," "care for the child at home" and "psychosocial support for parents". Information needs on parents' interaction with the healthcare system consisted of disease and treatment-related information, as well as health system navigation. Information needs on care for the child at home were represented by their caregiving for basic activities of daily living, medical caregiving, and psychosocial caregiving. Psychosocial support for parents included information on practical support and self-care. There were differences in priorities for information needs between parents and healthcare providers. Conclusions: Meeting the information needs of parents is an important part of psychosocial care in pediatric cancer care. Informational support may empower parents in caregiving for their child. The development of suitable information resources will be invaluable for healthcare providers in supporting parents' needs.

COVID-19 and Hemoglobinopathies: A Systematic Review of Clinical Presentations, Investigations, and Outcomes.

This systematic review aimed to provide an overview of the clinical profile and outcome of COVID-19 infection in patients with hemoglobinopathy. The rate of COVID-19 mortality and its predictors were also identified. A systematic search was conducted in accordance with PRISMA guidelines in five electronic databases (PubMed, Scopus, Web of Science, Embase, WHO COVID-19 database) for articles published between 1st December 2019 to 31st October 2020. All articles with laboratory-confirmed COVID-19 cases with underlying hemoglobinopathy were included. Methodological quality was assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. Thirty-one articles with data on 246 patients with hemoglobinopathy were included in this review. In general, clinical manifestations of COVID-19 infection among patients with hemoglobinopathy were similar to the general population. Vaso-occlusive crisis occurred in 55.6% of sickle cell disease patients with COVID-19 infection. Mortality from COVID-19 infection among patients with hemoglobinopathy was 6.9%. After adjusting for age, gender, types of hemoglobinopathy and oxygen supplementation, respiratory (adj OR = 89.63, 95% CI 2.514-3195.537, p = 0.014) and cardiovascular (adj OR = 35.20, 95% CI 1.291-959.526, p = 0.035) comorbidities were significant predictors of mortality. Patients with hemoglobinopathy had a higher mortality rate from COVID-19 infection compared to the general population. Those with coexisting cardiovascular or respiratory comorbidities require closer monitoring during the course of illness. More data are needed to allow a better understanding on the clinical impact of COVID-19 infections among patients with hemoglobinopathy. Clinical Trial Registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020218200.

Case Report: The Use of Intravenous SMOFlipid Infusion to Treat Severe Asparaginase-Induced Hypertriglyceridemia in Two Pediatric Acute Lymphoblastic Leukemia Patients.

Asparaginase-induced hypertriglyceridemia can have a spectrum of clinical presentations, from being asymptomatic to having life-threatening thrombosis or hyperviscosity syndrome. At present, there is no recommendation on routine lipid monitoring during asparaginase-containing treatment phase, nor a standardized guideline on its management. Two cases are presented here to illustrate the effects of concurrent infection on asparaginase-induced hypertriglyceridemia in patients with high-risk ALL and the use of SMOFlipid infusion as a treatment option in an acute situation.

Participation in Physical Activity and Physical Education in School Among Children With Acute Lymphoblastic Leukemia After Intensive Chemotherapy.

Background: Low physical activity (PA) level has been reported among survivors of childhood acute lymphoblastic leukemia (ALL). The present study was performed to determine the level of participation in general PA and physical education in school (PES) among children with ALL who completed intensive chemotherapy and identify possible barriers that influence adherence to PA and PES. Methods: A cross-sectional, single-center study was conducted over 1 year in a tertiary pediatric hematology and oncology referral center in Kuala Lumpur, Malaysia. A total of 47 children with ALL aged 7-18 years old who were off-treatment and attended school on a regular basis were recruited. A modified structured questionnaire adapted from the Youth Risk Behavior Surveillance System, Division of Adolescent and School Health, the Centers for Disease Control and Prevention (CDC) was used to assess the children's level of PA and PES participation. Results: Among the 47 children will ALL included herein, 11 (23.4%) were physically active for at least 60 min a day for 5 days or more, following CDC recommendations. The median duration from completion of intensive chemotherapy was 4.95 years (25th, 3.29; 75th, 7.95). Younger age at study entry (median, 8.7 years old vs. 12.2 years old) and younger age at diagnosis (median, 2.9 years old vs. 4.3 years old) were significantly associated with higher PA level. Almost all children (45/47, 95.7%) participated in PES. Barriers to non-participation in PES mainly included exhaustion or fear of injury. Conclusions: Majority of the children with ALL included herein had low levels of daily PA after intensive chemotherapy. Nonetheless, their participation in PES was encouraging. PA should thus be promoted during and after cessation of ALL treatment to prevent long-term health risks and improve overall quality of life.

Early Surgery Is Feasible for a Very Large Congenital Infantile Fibrosarcoma Associated With Life Threatening Coagulopathy: A Case Report and Literature Review.

Background: Congenital infantile fibrosarcoma (CIF) is a rare malignant soft tissue tumor that predominantly occurs in children under 1 year of age. CIF is frequently misdiagnosed with other conditions like hemangioma of infancy, infantile fibromatosis, or kaposiform hemangioendothelioma. Disseminated intravascular coagulopathy (DIVC) is rarely reported to be associated with CIF. Case presentation: We describe an infant who presented with a large mass over the right arm. She was initially treated conservatively as hemangioma but was later confirmed by tissue histopathological examination to have CIF as the mass rapidly increased in size. She developed massive intra-tumoral bleed with DIVC whilst receiving neoadjuvant chemotherapy requiring multiple blood products transfusion. An urgent near-total resection of the tumor was performed in view of life threatening bleeding despite multiple blood transfusions. Post-operatively, she received further adjuvant chemotherapy. Subsequently, she remained in complete remission 32 months off-treatment and has full function of the affected limb. Conclusions: CIF is an important condition to be considered in infant who has large mass over the extremity. DIVC could be associated with large CIF and when it occurs can be life-threatening. Whenever feasible early surgery should be performed in very young patients with large CIF to prevent mortality from bleeding.

Acquired thrombotic thrombocytopenia purpura associated with severe ADAMTS13 deficiency in a 3-year-old boy: a case report and review of the literature.

BACKGROUND: Acquired thrombotic thrombocytopenia purpura is very rarely encountered in children. It is often misdiagnosed initially when the condition is not inherited. CASE PRESENTATION: We describe a 3-year-old Malay boy who presented with simple febrile seizure and had no neurological deficit, however, he was found to have microangiopathic hemolytic anemia, thrombocytopenia, and elevated serum lactate dehydrogenase. An ADAMTS13 assay results showed zero activities (0%), and markedly high level of ADAMTS13 inhibitor (93.15 U/mL) confirming the diagnosis of secondary thrombotic thrombocytopenia purpura. He received fresh frozen plasma infusions for 3 days and subsequently his platelet levels normalized. Serial ADAMTS13 assay results showed improvement. He was also given a short course of prednisolone after which the ADAMTS13 activity normalized (> 114%) at the end of prednisolone course. CONCLUSIONS: At presentation, acquired thrombotic thrombocytopenia purpura in a very young child is commonly misdiagnosed as other conditions like idiopathic thrombocytopenic purpura, Evans syndrome, atypical hemolytic-uremic syndrome, or malignancy. ADAMTS13 assay should be performed early when thrombotic thrombocytopenia purpura is suspected as this condition is associated with dire consequences.