Exploring the beliefs of caregivers about the caregiving experiences of children with acute lymphoblastic leukemia in Malaysia.

Background: Cancer is one of the major leading causes of childhood death, and the most common type is acute lymphoblastic leukemia. The survival rate has increased in recent years; however, the long patient trajectory may trigger psychological distress among caregivers as they play an active role in ensuring that the child's basic needs are met. Being in a patient-focused system, the needs of caregivers may be neglected. Objective: This study aimed to explore the caregivers' beliefs on children with acute lymphoblastic leukemia caregiving experiences in order to promote their well-being. Methods: Caregivers from thirteen families of children with acute lymphoblastic leukemia participated in this phenomenological study. NVivo 12 was used for the thematic analysis of the data. Consolidated criteria for reporting qualitative research (COREQ) were used in this study. Results: Overall, five main themes for caregivers' beliefs were identified from their responses: 1) dietary intake with emphasis on its importance in aiding recovery and its potential influence on cancer complications, 2) childcare which emphasized the need to be strong and self-sacrifice, 3) treatment which reflected the use of home or natural remedies and caregivers' negative perception towards chemotherapy, 4) causes of cancer believed to be linked to early childcare choices on food, beverage, and stress imposed on the child, and 5) source of beliefs that included doctors, online platforms, personal encounters and information on food labels. Conclusion: Caregivers' beliefs are varied and nuanced, formed in a multicultural social background of Malaysia. These findings provide knowledge for future supportive cancer care for patients, their caregivers, and the treatment outcome in the Malaysian context. Nurses, who play an essential role between healthcare professionals and patients and/or their caregivers, can be empowered to provide psychological support, early detection of psychological distress, and exploration of caregiver beliefs, given that the number of clinical psychologists in Malaysia is lacking, and there is greater preference for care to be provided by doctors or nurses.

Keberkesanan Bahan Pendidikan Bercetak untuk Pengurusan Pemakanan dalam Kalangan Penjaga Pesakit Kanser Kanak-kanak (Effectiveness of Printed Educational Material on Nutrition Management Among Paediatric Oncology Caregives) / Jurnal Sains Kesihatan Malaysia

@#Malnutrition is a common occurrence during cancer treatment among pediatric cancer patients and without proper care, it can bring negative implications. The purpose of this study was to develop a printed educational material titled “Penjagaan Pemakanan untuk Penjaga Kanser Kanak-Kanak” (Nutrition Care for Children with Cancer) to help the caregivers to manage their child in terms of nutrition. The objective of this study was to evaluate caregiver’s knowledge, attitude and practice (KAP) before and after receiving the printed educational material and to evaluate the acceptance of the printed educational material among caregiver. This quantitative study (Quasi-Experiment) was conducted among pediatric oncology caregivers in Institute of Pediatrics Hospital Kuala Lumpur (IPHKL)(n=34) and Universiti Kebangsaan Malaysia Medical Center (UKMMC)(n=34). IPHKL served as the experimental group where the caregivers received the developed booklet meanwhile UKMMC served as the control group where the caregivers received a pamphlet published by Institut Kanser Negara titled “Terapi Diet Pesakit Kanser – Kesan Sampingan Rawatan dan Cara Mengatasinya” (Nutrition Care for Cancer – How to Overcome the Side Effects of the Treatment). Results from this study showed that there was a significant increase (p<0.05) for KAP of the caregivers in both groups with a higher increase was seen in the experimental group. The score for KAP in the experimental group was (70 ± 8%) and after receiving the printed educational material, the score significantly increased to (92 ± 10%) which was higher compared to control group where their score before was (70 ± 11%) and increased to (77 ± 10%). For the evaluation of acceptance, there was a significant difference (p<0.05) for the mean score between experimental group (48.85 ± 4.931) and control (42.29 ± 6.834) with t= 4.538. In conclusion, the printed educational material developed from this study was well accepted and has the potential to effectively increase caregivers’ nutritional knowledge of managing the nutritional aspect of pediatric cancer patients during treatment. This could improve their nutritional status for a better clinical outcome.

Hb Lepore/β0-Thalassaemia With α+-Thalassaemia Interactions, A Potential Diagnostic Pitfall

Haemoglobin (Hb) Lepore is a variant Hb consisting of two α-globin and two δβ-globin chains. In a heterozygote, it is associated with clinical findings of thalassaemia minor, but interactions with other haemoglobinopathies can lead to various clinical phenotypes and pose diagnostic challenges. We reported a pair of siblings from a Malay family, who presented with pallor and hepatosplenomegaly at the ages of 21 months and 14 months old. The red cell indices and peripheral blood smears of both patients showed features of thalassaemia intermedia. Other laboratory investigations of the patients showed conflicting results. However, laboratory investigation results of the parents had led to a presumptive diagnosis of compound heterozygote Hb Lepore/β-thalassaemia and co-inheritance α+-thalassaemia (-α3.7). Hb Lepore has rarely been detected in Southeast Asian countries, particularly in Malaysia. These two cases highlight the importance of family studies for accurate diagnosis, hence appropriate clinical management and genetic counseling.

Parental reports of behavioural outcome among paediatric leukaemia survivors in Malaysia: a single institution experience.

OBJECTIVES: To determine the behavioural impact of chemotherapy in survivors of acute lymphoblastic leukaemia (ALL) treated with chemotherapy only and to identify treatment-related or sociodemography-related factors that might be associated with behavioural outcome. METHODS: We examined 57 survivors of childhood ALL, who were off treatment for at least 2 years and were in remission, aged 4-18 years, and 221 unrelated healthy controls. The Child Behaviour Checklist (CBCL) parent report was used either in English or in Bahasa Malaysia (the national language of Malaysia) to assess the behavioural outcome. RESULTS: Childhood ALL survivors had significantly higher scores on externalising behaviour on the CBCL parent report than did controls. Higher problem scores were found in ALL survivors with single parents on 'total problems' (P = 0.03) and subscales 'withdrawn' (P = 0.03), 'social problems' (P < 0.01) and 'delinquent behaviour' (P = 0.03) than in survivors with married parents. Significant associations were seen between a lower education level of the father and the variables representing internalising (withdrawn, anxious/depressed) and externalising (aggressive behaviour). We observed trends on higher scores in all scales in ALL survivors with single parents than in controls with single parents or with fathers with low education level, especially primary education only. CONCLUSIONS: Malaysian childhood ALL survivors had a significantly increased risk for externalising behavioural problems, and there was a trend towards increased risk of problems in many other behavioural scales. Understanding the sociocultural dimension of patients' health is important to be able to design the most appropriate remedy for problem behaviours detected in this multi-ethnic population.

The Prevalence of Sensorineural Hearing Loss in β-thalassaemia patient treated with Desferrioxamine

Objective: This study aimed to evaluate the prevalence of sensorineural hearing loss (SNHL) in β-thalassaemia patients treated with Desferrioxamine (DFO) and determine the correlation of SNHL with average daily DFO dosage, serum ferritin level and Therapeutic index (T.I). Methods: This is a cross sectional descriptive study carried out for a period of 14 months and 54 patients were recruited. The recruited patients are transfusion dependant β- thalassaemia patient aged 3 years and above treated with DFO. An interview, clinical examination and hearing assessment, which included tympanogram, and Pure Tone Audiometry (PTA) or behaviour alaudiometry were performed. The data on age started on DFO, average daily DFO, duration of DFO intake, serum ferritin past 1 year and Therapeutic Index (T.I) were obtained from patients’ case notes. Results: The prevalence of SNHL was 57.4% and majority has mild hearing loss (93.6%). Fourteen patients (25.9%) have bilateral ear involvement and as many as 17 patients (31.5%) have SNHL in either ear. A total of 23 patients (42.6%) have normal hearing level. Although the prevalence of SNHL was 57.4%, only a small percentage of the patient noticed and complained of hearing loss (11.1%). There is no association between age started on DFO, average daily DFO and duration of DFO intake with normal hearing group and those patients with SNHL. Positive correlation was seen between average daily DFO with 2000 and 4000Hz on PTA in the left ear and between serum ferritin level past 1 year with 4000 and 8000Hz in the right ear and 8000Hz in the left ear. No significant correlation was seen between T.I on PTA. Conclusion: The prevalence of SNHL from hearing assessment is high in β-thalassaemia patients in this study. However, it is manifested clinically in a smaller percentage. We suggest a baseline hearing assessment should be carried on all β-thalassaemia patients prior to DFO chelation therapy.

Physical activity of pediatric patients with acute leukemia undergoing induction or consolidation chemotherapy.

This study aimed to assess the physical activity levels of pediatric patients with acute leukemia undergoing chemotherapy. Thirty-eight pediatric patients and matched controls, aged 3-12 years old, were measured for weight, height, and other anthropometric parameters. Physical activity was assessed using actical accelerometer and activity log book. Patients recorded significantly lower mean total activity counts (26.2±30.2 cpm vs. 192.2±68.8 cpm; p<0.01) and spent more time in sedentary activities (1301±121 min vs. 1020±101 min; p<0.001) compared to controls. They also achieved fewer 1-5-min bouts of moderate-vigorous physical activity (MVPA) compared to controls (1.50±5.95 vs. 37.38±40.36; p<0.001). In conclusion, patients had lower physical activity level and intensity; and simple exercise intervention programs may be needed to minimize the detrimental effects of prolonged sedentary behaviors.

Health-related quality of life (HRQOL) among pediatric leukemia patients in Malaysia.

BACKGROUND: Health-Related Quality of Life (HRQOL) in pediatric leukemia patients in Malaysia has not been studied before. This was mainly due to a lack of databases on patients in the past. Many patients abandoned treatment or were lost to follow up. With more children now fully compliant and completing treatment nowadays, with higher cure rate, HRQOL has become important for our patients. The purpose of the current study was to determine the HRQOL scores in children with acute leukemia and to compare the scores for those on maintenance chemotherapy with those off-treatment as well as to determine factors which might affect HRQOL. METHODS: Seventy-seven children in a pediatric oncology center in Kuala Lumpur, Malaysia diagnosed with acute leukemia were consecutively enrolled, of whom 22 were on maintenance chemotherapy and 55 off-treatment. The Pediatric Quality of Life Inventory (PedsQL™) Scales were used to assess HRQOL. RESULTS: Children on maintenance chemotherapy had significantly lower child self-report HRQOL scores across all domains (P < 0.001) especially psychosocial health compared with those who were off-treatment. Also, parents with children on maintenance chemotherapy reported significantly lower HRQOL scores across all domains (P < 0.05) except social functioning compared with parents with children off-treatment. Younger child age was associated with lower parent proxy-report total score (P = 0.007) CONCLUSIONS: Pediatric acute leukemia patients on maintenance chemotherapy experienced significantly poorer HRQOL compared to those off-treatment.

Prevalence and parental perceptions of complementary and alternative medicine use by children with cancer in a multi-ethnic Southeast Asian population.

BACKGROUND: The purpose of the current study was to determine the prevalence of use of complementary and alternative medicine (CAM) by children with cancer and to compare the characteristics of CAM users and CAM nonusers. METHODS: A cross-sectional study was performed at a pediatric oncology center in Kuala Lumpur, Malaysia. The parents of 97 children with cancer were interviewed using a structured questionnaire. RESULTS: Overall, 84.5% of the respondents had used CAM, and most of them believed that CAM provided a boost to the immune system, and used CAM with the intention to complement conventional treatment. The most frequently used CAM was water therapy (78%), followed by spirulina (33%), vitamin C (27%), multivitamin (23%), visit to traditional healers (22%), sea cucumber (Stichopus horrens) (15%), and Chinese traditional medicine (12%). The Malay (n = 67) were using more often (93%) CAM than non-Malay (n = 30, use 67%, P = 0.001). CONCLUSIONS: CAM use is common among Malaysian children with cancer. Understanding the sociocultural dimension of patients' health beliefs is important to a successful treatment, and pediatric oncologists should ask for the use of CAM.