OUTCOMES OF EXTREMELY PRETERM INFANTS AT 18 MONTHS: CONTRAST BETWEEN MEDICAL CATEGORIZATION AND PARENTAL PERSPECTIVES

BACKGROUND: Extremely preterm infants undergo standardized assessment at 18 months corrected age (CA) and are classified into objective categories, corresponding to level of neurodevelopmental impairment (NDI). However, little is known about how parents perceive their children and whether this differs according to level of impairment.

OBJECTIVES: To explore parental perspectives regarding their child in a balanced fashion (positive and negative aspects) and investigate whether reported answers are associated with level of NDI.

DESIGN/METHODS: All surviving infants born <29 weeks of gestational age (GA) in 2009-2012 in a tertiary care center underwent neurodevelopmental assessment at 18-months CA including complete neurological assessment and Bayley-III scales. They were classified into absence or presence of either mild-moderate NDI, or severe neurodevelopmental impairment (SNI). Parents were asked two open-ended questions: What concerns you most about your child?, Please describe the best things about your child. Answers to these questions were analyzed independently by three investigators using qualitative methodology. Theme frequency was compared across NDI categories using chi-square.

RESULTS: At 18 months CA, 190 of 323 eligible children had both neurodevelopmental assessment data and parental responses (59%). Parents reported three main positive themes regarding their child: 1) positive personality (61%), either social (19%), easygoing (19%) or curious (18%): He is determined to do things by himself.; 2) happiness (40%): He smiles and is happy, loves hugs.; 3) making progress (21%); She is learning very fast. These themes were invoked with a similar frequency by parents, regardless of NDI category. For concerns, the two main themes were 1) neurodevelopment (56%), most particularly language (25%) and behavior (20%): He is not talking much and always throws his toys. and 2) physical concerns (24%) including nutrition and growth (17%): He is small. Some respondents voiced concerns about the future (5%) whereas a significant proportion stated: I have no concerns. (16%). Parents whose children had mild-moderate NDI were more likely to report worrying about development, compared to others, especially language (p < 0.05).

CONCLUSION: Growth and neurodevelopment are two main areas of parental concerns and should continue to be the focus of follow-up assessment. However, independent of childs NDI, parents overwhelmingly report similar positive aspects. Neonatal outcome research should incorporate parental evaluations of their children, including negative and positive impacts, enabling physicians to provide balanced information to parents of all preterm infants.