Developing Tools for Needs Assessment for Children in Sub-Saharan Africa: The validation and Application of the PaedsQ4 and NEC Tools in the Zambian Paediatric Population

Introduction: Though significant advances have been achieved in the provision of palliative care in Africa in recent years, there is very little evidence for outcomes of effectiveness of this care. A primary reason for this dearth of evidence is the lack of appropriate and validated outcome tools Methodology: This study assessed and applied 2 research tools to assess palliative care needs in children attending University teaching hospital in Lusaka, Zambia. The study population was parents and guardians of children receiving care at the university teaching hospital. Sample size was calculated as 100. Trained research assistants approached potential participants and explained the research to them. Following informed voluntary consent the two questionnaires were administered by the research assistants. These were the Needs Evaluations questionnaire (NEQ) and the paedsQL4 questionnaires. We used Cronbach’s alpha to determine validity and factor analysis to identify relevant factors. We compared the mean difference across the three groups of patients, general paediatric patients, children with HIV, paediatric and oncology patients using ANOVA. Results: Both tools were found to be reliable for assessing palliative care needs in children (Cronbach’s alpha >0.8). Generally there were very high need gaps across all hospital wards with 15/23 items having need gap of >50%. Overall the largest need caps was in information domain. The HIV ward had least need gap with only 8/23 items having a need gap of >50%. Results from the paedsQL4 showed that there were significant mean differences across the three categories of patients in all domains of functioning with oncology patients performing worst. In physical functioning domain, the items showed that 6/7 items had significant mean differences (p<0.05). Confirmatory factors analysis showed that 2 items were loading highly on the physical functioning factor. These were running and participating in sports (0.896). In the emotional functioning domain, 2 items loaded highly on factor analysis, feeling sad (0.842 and angry (0.666). In the social functioning domain, highest loading were in 2 items, both related to making friends i.e getting along with friends (0.826) and friend wanting to be friend (0.847). In the school domain missing school to go hospital loaded highly on factor analysis (0.842) followed by difficulty paying attention in class (0.716) Conclusion: The study successfully applied two quantitative tools for assessing needs in Children. The results showed that the tools are reliable and applicable in the Zambian context. The findings indicate needs gap for child palliative care services in Zambia. Pain control remained in sub-optimal for especially for children with cancer.