Level of Family centered care and associated factors among parents of children with cancer at tertiary level hospital, Ethiopia.

OBJECTIVE: To determining level and factors affecting Family Centered Care (FCC) in pediatric oncology unit of Tikur Anbessa Specialized hospital (TASH), Ethiopia. METHOD: A cross sectional study was conducted from June to December 2022. Three hundred ninety-three parents of children with cancer were consecutively interviewed using Measure of Processes of Care (MPOC-20). Multivariable linear regression was used to identify independent predictors of FCC. RESULT: The total MPOC 20 means was 3.71(SD = 1.04). The mean score for respectful and supportive care, coordinated and comprehensive care, enabling and partnership, providing specific information and providing general information were found to be 4.8, 4.6, 3.7, 2.3 and 2.6, respectively. Family employment (-0.33(95% CI = -0.63, -0.03; P = .029)), low family education (-0.40 (95% CI = -0.70, -0.11; P = .008)), referral cases (-0.37(95% CI = -0.59, -0.14; P = .001)), shorter time spent in hospital (-0.49(95% CI = -0.85, -0.12; P = .010)) and psychological distress (-0.01(95% CI = -0.026, -0.001; P = .028)) were associated with lower mean score of FCC. CONCLUSION: The total FCC mean score was found to be low. From the five FCC components providing general and specific information scored the lowest mean level. PRACTICE IMPLICATIONS: Mechanism to improve information delivery that address parents from different background and referred from other health facility should be in place in order to improve FCC level. In addition, the FCC should be designed to address parents of children with different lengths of stay.

Impact of Delay Prior to Treatment in Ethiopian Children with Acute Lymphoblastic Leukemia.

Introduction: More than 85% of childhood malignancies occur in developing countries with less than a 30% cure rate as opposed to more than 80% cure rate in developed countries. This disproportionately significant difference might be due to delays in diagnosis, treatment initiation, lack of adequate supportive care, and treatment abandonment. We aimed to determine the impact of overall treatment delay on induction mortality of children with acute lymphoblastic leukemia treated at Tikur Anbessa specialized hospital (TASH). Methods: A cross-sectional study was conducted among children who were treated from 2016 to 2019. Children with Down syndrome and relapsed leukemia were excluded from this study. Results: A total of 166 children were included; most patients were males (71.7%). The mean age at diagnosis was 5.9 years. The median time interval from the onset of symptoms to the first TASH visit was 30 days and the median period from TASH's first clinic visit to diagnosis was 11 days. The median time to initiate chemotherapy after diagnosis was 8 days. The total median time from the first onset of symptoms to chemotherapy initiation was 53.5 days. Induction mortality was 31.3%. High-risk ALL and patients with an overall delay between 30 and 90 days were more likely to experience induction mortality. Discussion: Patient and healthcare system delay is high compared to most studies done and a significant association has been noted with induction mortality. Efforts to expand the pediatric oncology service in the country and efficient diagnostic and treatment approach need to be established to reduce mortality associated with overall delay.

Translation and evaluation of psychometric properties of the Amharic pediatric quality of life inventory 4.0 generic core scale for children with cancer.

BACKGROUND: Childhood cancer negatively impacts a child's physical, mental, and behavioural health and significantly affects their health-related quality of life. The Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL™ 4.0 GCS) is one of the most commonly used measures of the quality of life in children. However, the Amharic version of PedsQL™ 4.0 GCS has not been validated in a paediatric oncology population. This study aimed to translate and evaluate the psychometric properties of the Amharic PedsQL™ 4.0 GCS (PedsQL™ 4.0 GCS (A)) for Ethiopian children with cancer. METHODS: A descriptive cross-sectional study was conducted among children aged 8-18 years with any type of cancer across the cancer trajectory. Cronbach's alpha and intraclass correlation coefficient were computed to determine the internal consistency and test-retest reliability of the scale. The convergent validity was established by examining the correlation of the PedsQL™ 4.0 GCS (A) with the Amharic version of the Revised Child Anxiety and Depression Scale (RCADS-25(A)). Factorial validity was evaluated by conducting a confirmatory factor analysis. RESULTS: The study included 142 participants with childhood cancer. PedsQL™ 4.0 GCS (A) had good validity and reliability. It demonstrated high internal consistency with a Cronbach's alpha of 0.96 for the scale and 0.82-0.95 for the subscales. The intraclass correlation coefficient for the scale was 0.9 and that for the subscales was 0.76-0.90. The PedsQL™ 4.0 GCS (A) was highly correlated with RCADS-25 (A) (r = - 0.97, p < 0.001), supporting its convergent validity. The four-factor structure of the model fitted the data satisfactorily (χ2/df = 1.28; CFI = 0.97; TLI = 0.97; RMSEA = 0.05; SRMR = 0.05), supporting the factorial validity of the PedsQL™ 4.0 GCS (A). CONCLUSION: The PedsQL™ 4.0 GCS (A) demonstrates desirable psychometric properties for assessing quality of life among Ethiopian children with cancer. The scale can be used in clinical settings for assessing and evaluating quality of life in children with cancer. The use of parent-report versions and studies in those with different health conditions and healthy populations are necessary to further establish the psychometric properties of the PedsQL™ 4.0 GCS (A).