Purpose: The purpose of this study was three-fold; to investigate the use of pain assessment tools and pain reduction strategies during minor painful procedures in neonatal units in Australia; to map the history of an infant’s prolonged hospitalisation in a tertiary neonatal intensive care unit with respect to painful procedures and pain management practices, and to describe the effectiveness of oral sucrose in reducing procedural pain during the course of an infant’s prolonged hospitalisation (greater than/equal to 28 days). (For complete abstract open document)

BACKGROUND. There are various methods of health care follow-up of children born very preterm (VP, ≤31 week gestation) from a neonatal intensive care unit (NICU). Whilst the gold standard is the systematic NICU based follow-up program, which provides highly specialised neurodevelopmental and medical assessment, it is not feasible at all the appropriate times for all infants because of cost and geographical constraints. In Queensland, and elsewhere, 50% of children born VP rely on primary care-general practice for their screening and health needs once discharged from hospital. Recently, randomised and interrater agreement studies have shown the feasibility of the use of a questionnaire-based collection of late health status in children born VP. A preterm-targeted childhood primary health screening and surveillance program which draws from these methods may be effective in collecting long-term disability data and meeting the screening needs of children born VP. AIM. To (1) develop and (2) assess a Preterm-Targeted Screening and Surveillance Program against the routine National Health Medical Research Council (NHMRC) program for the early detection of sensorineural based disability in children born VP by general practitioners in the primary health setting for (1) prevalence estimation and (2) as a screening tool. METHODS. A two-part approach was chosen. Part 1 was a reconstructed cross-sectional cohort of 388 of 523 (74.2%) located and consented 2, 4 and 7 year ca (corrected age) children with a birthweight ≤ 1250 grams (g) born in Queensland. Epidemiological information was collected on child health outcomes and factors relating to the feasibility of providing a standardised targeted screening and surveillance program to be used by general practitioners to detect sensorineural based disability in children born VP. The Preterm- Targeted Screening and Surveillance Program was developed using World Health Organisation (WHO) screening program criteria and NHMRC evidence based health practice criteria. Part 2 was a multicentred randomised controlled trial to test the efficacy of the newly developed program in 202 VP infants who were randomised to receive the NHMRC or Preterm-Targeted Screening and Surveillance Program. The primary outcome was correct identification of sensorineural disability (developmental quotient >-1 standard deviation (SD), cerebral palsy, bilateral blindness or deafness requiring aids) at 12-months ca by general practitioners assessed against gold standard paediatric assessments. The odds ratios (OR) calculated the disability status (agreed vs. disagreed/unsure). Kappa statistics (k) and screening test characteristics calculated interrater agreement and screening accuracy (agreed vs. disagreed). Logistic regression investigated factors that might affect agreement between general practitioners and paediatric assessment for disability. Secondary outcomes were designed to be descriptive and included post-natal depression, parental stress, health service utilisation and satisfaction. RESULTS. Part 1 demonstrated that in Queensland there is no state-based information on 25.8% of children born VP. Children assessed suffer from sensorineural impairment and a range of other health and developmental problems. In addition, there is limited specialist child health resources located outside the major metropolitan areas and families rely heavily on general practitioners for child health care. Parents and general practitioners clearly demonstrated that they would use an evidence-based targeted childhood screening and surveillance program for children born VP. The Preterm-Targeted Screening and Surveillance Program provide parents and health practitioners with an evidence based-high accuracy standardised screening for sensorineural and non-sensorineural domains. In Part 2, 195 of 202 infants randomised were assessed for the primary outcome. There was no difference in the correct identification of sensorineural disability between general practitioners in either group shown by an OR of 0.91 (95%CI 0.50, 1.65) (preterm-targeted 65.6% vs. NHMRC 67.6%). No prognostic factors independently affected this outcome. Interrater agreement was fair (preterm-targeted k =0.30, p for Ho=0.001 vs. NHMRC k =0.29, p for Ho=0.002). The preterm-targeted group had more disability identified (73% vs. 33%) with less under-referrals (27% vs. 67%) but poorer specificity (70% vs. 92%) with more over-referrals (30% vs. 8%) compared to the NHMRC group. Secondary outcomes showed that children born VP experience high rates of health services use but their families experience similar rates of depression and parental stress compared to the general paediatric population. Satisfaction results suggest that the program was well received. CONCLUSION. A comprehensive epidemiological approach to collecting a broad range of VP child health outcomes and health service data was successfully used to develop an evidence-based Preterm-Targeted Screening and Surveillance Program which proved to have excellent uptake by parents and general practitioners. Assessing the program using a randomised methodology has allowed demonstration of its efficacy as a screening tool when used by general practitioners in the primary health setting. The Preterm-Targeted Screening and Surveillance Program is superior in identifying disability at 12-month ca compared to the standard NHMRC program. Whilst the results are promising, the program will not provide totally accurate prevalence of disability data because of the overestimation of disability.

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