Purpose: Valid decision-aids for parents making decisions when facing extreme premature delivery at limits of viability are scarce (Guillen U. J Pediatrics 2012). We aimed to iteratively develop a valid short film decision-aid on the range of possible outcomes of extreme premature infants, from death to survival with or without impairments. Design/
Methods: Semi-structured interviews were conducted of neonatologists, obstetricians, nurses ('professionals' n=31) and parents of premature infants <26wks GA (n=30). These defined key content items and recommended a film. We formatted items into a short film. A first film was pre-tested and modified. To validate the final film, we tested three groups: 'professionals', 'experienced' parents (previous premature delivery) and healthy 'naive' women (no prior knowledge about prematurity). They estimated the usefulness of the film (8-question survey) and completed the State-Trait Anxiety Inventory.
Results: A 10-minute film showed clips of 6 children/parent dyads at toddler age. All were former 23-25 weekers with a wide range of outcomes (from normal, to mild, to severe cerebral palsy and/or cognitive and language delay). Two parents of multiples with only one survivor discussed bereavement. The first film was perceived as 'negative' and resulted in high anxiety (50.8 anxiety state). The final film was evaluated by 16 'professionals', 14 'experienced' parents, and 13 'naive' women. This iteration was well accepted by all 3 groups, who perceived it as 'balanced' with a 'neutral' message. In this population, anxiety was not induced: anxiety state 'experienced' 36.1 vs 'naive' 30.2
Conclusions: We designed a valid short-film to show the range of outcomes of prematurity, which may be a useful and non-stress inducing aid to parents facing extreme prematurity. Future research should evaluate the effectiveness of the film in controlled trials over decision cards.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making