Respiratory, birth and health economic measures for use with Indigenous Australian infants in a research trial: a modified Delphi with an Indigenous panel

BACKGROUND: There is significant disparity between the respiratory health of Indigenous and non-Indigenous Australian infants. There is no culturally accepted measure to collect respiratory health outcomes in Indigenous infants. The aim of this study was to gain end user and expert consensus on the most relevant and acceptable respiratory and birth measures for Indigenous infants at birth, between birth and 6 months, and at 6 months of age follow-up for use in a research trial. METHODS: A three round modified Delphi process was conducted from February 2018 to April 2019. Eight Indigenous panel members, and 18 Indigenous women participated. Items reached consensus if 7/8 (≥80%) panel members indicated the item was ‘very essential’. Qualitative responses by Indigenous women and the panel were used to modify the 6 months of age surveys. RESULTS: In total, 15 items for birth, 48 items from 1 to 6 months, and five potential questionnaires for use at 6 months of age were considered. Of those, 15 measures for birth were accepted, i.e., gestational age, birth weight, Neonatal Intensive Care Unit (NICU) admissions, length, head circumference, sex, Apgar score, substance use, cord blood gas values, labour, birth type, health of the mother, number people living in the home, education of mother and place of residence. Seventeen measures from 1-to 6 months of age were accepted, i.e., acute respiratory symptoms (7), general health items (2), health care utilisation (6), exposure to tobacco smoke (1), and breastfeeding status (1). Three questionnaires for use at 6 months of age were accepted, i.e., a shortened 33-item respiratory questionnaire, a clinical history survey and a developmental questionnaire. CONCLUSIONS: In a modified Delphi process with an Indigenous panel, measures and items were proposed for use to assess respiratory, birth and health economic outcomes in Indigenous Australian infants between birth and 6 months of age. This initial step can be used to develop a set of relevant and acceptable measures to report respiratory illness and birth outcomes in community based Indigenous infants.