METHOD: A cross-sectional study involving 200 parents of children with neurodevelopmental disabilities aged 1-18 years was carried out. The Malay version of the Measure of Process of Care (MPOC-20) questionnaire was used to measure the perceptions of parents on the services. Descriptive statistical analysis was done to describe the mean score of each MPOC-20 scale. Univariate and bivariate analyses were used to examine the associations between the characteristics of parents and children as well as the sociodemographic and environmental factors with the MPOC-20 scales.
RESULTS: The mean score of the MPOC-20 scales ranged from 4.50 to 5.65 (SD 0.93-1.51). Amongst the MPOC-20 scales, parents ranked enabling, having good partnership and being comprehensive (EP) the highest, whereas the provision of specific information (PS) received the lowest score. Amongst all the MPOC-20 scales, significant differences were shown in parent's employment, between children's age groups and between ethnic groups.
CONCLUSIONS: The Malay MPOC-20 is a validated tool that can be used in evaluation of services among the Malay-speaking community, and therefore, it is recommended for our clinical use to improve family-centred practice in paediatric rehabilitation.
METHODOLOGY: This retrospective study included patients sent home on noninvasive or invasive ventilation, over 13 years, by the pediatric respiratory unit in a single center. Children who declined treatment were excluded.
RESULTS: Seventy children were initiated on HV: 85.7% on noninvasive ventilation, 14.3% on invasive ventilation. There was about a threefold increase from 2001-2008 (n = 18) to 2009-2014 (n = 52). Median (range) age of initiating HV was 11 (1-169) months and 73% of children were <2 years old. Common indications for HV were respiratory (57.2%), chest/spine anomalies (11.4%), and neuromuscular (10.0%). Fifty-two percent came off their devices with a median (interquartile range) usage duration of 12 (4.8, 21.6) months. Ten children (14.3%) died with one avoidable death. Children with neuromuscular disease were less likely to come off their ventilator (0.0%) compared to children with respiratory disease (62.1%). Forty-one percent of parents bought their equipment, whereas 58.6% borrowed their equipment from the medical social work department and other sources.
CONCLUSION: HV in a resource-limited country is possible. Children with respiratory disease made up a significant proportion of those requiring HV and were more likely to be weaned off. The mortality rate was low. The social work department played an important role in facilitating early discharge. Pediatr Pulmonol. 2017;52:500-507. © 2016 Wiley Periodicals, Inc.
METHODS: Currently available indicators from both household and facility surveys were collated through publicly available global databases and respective survey instruments. We then developed a suite of potential indicators and associated data points for the 45 WHO Essential Interventions spanning preconception to newborn care. Four types of performance indicators were identified (where applicable): process (i.e. coverage) and outcome (i.e. impact) indicators for both screening and treatment/prevention. Indicators were evaluated by an international expert panel against the eRegistries indicator evaluation criteria and further refined based on feedback by the eRegistries technical team.
RESULTS: Of the 45 WHO Essential Interventions, only 16 were addressed in any of the household survey data available. A set of 216 potential indicators was developed. These indicators were generally evaluated favourably by the panel, but difficulties in data ascertainment, including for outcome measures of cause-specific morbidity and mortality, were frequently reported as barriers to the feasibility of indicators. Indicators were refined based on feedback, culminating in the final list of 193 total unique indicators: 93 for preconception and antenatal care; 53 for childbirth and postpartum care; and 47 for newborn and small and ill baby care.
CONCLUSIONS: Large gaps exist in the availability of information currently collected to support the implementation of the WHO Essential Interventions. The development of this suite of indicators can be used to support the implementation of eRegistries and other data platforms, to ensure that data are utilised to support evidence-based practice, facilitate measurement and accountability, and improve maternal and child health outcomes.