Parents' evaluation of developmental status in children born with a birthweight of 1250 g or less

OBJECTIVE: To evaluate the agreement between parental reporting of development of children born very preterm using the Parents' Evaluation of Developmental Status (PEDS) questionnaire and professional assessment by a paediatric developmental team in the detection of sensorineural disability. METHODS: A cross-sectional cohort study of 362 children born in Queensland with a birthweight < or = 1250 g, who were surviving at 2 and 4 years of age corrected for prematurity, was conducted. Parents completed the PEDS questionnaire prior to their child receiving a neurodevelopmental assessment. The level of agreement for sensorineural disability between the neurodevelopmental assessment and the parents' score on the PEDS questionnaire was measured using the kappa statistic, and screening test characteristics were calculated. Logistic regression was used to investigate factors that might affect agreement. RESULTS: Two hundred and eighty-three (78%) of the eligible children were located and contacted. Of these, 216 (76%) agreed to participate in the study (110, 2-year-olds; 106, 4-year-olds). Agreement between the two forms of rating sensorineural disability (developmental quotient > -2SD (standard deviation), cerebral palsy, bilateral blindness and deafness requiring aids) for the 4-year age group children was fair (kappa = 0.27, P = 0.001). PEDS accurately identified 69% (11 of 16) of disabled children and 72% (65 of 90) non-disabled children. The test characteristics for these children were similar to Glascoe's norming sample with a PPV 31% (95% CI: 14-48%), specificity 72% (95% CI: 62-81%), but lower sensitivity 69% (95% CI: 62-81%) and higher false-negative rate 31% (95% CI: 11, 59). Agreement for the 2-year age group was fair with poor test characteristics. Other comparisons for both age groups (PEDS A and B compared using a disability status with DQ > -1SD) showed poor agreement and test characteristics. Gestation age < 27 weeks and maternal education at or below grade 10 in the 2-year age group were the only factors independently affecting agreement. CONCLUSIONS: The agreement between parental evaluation of sensorineural disability status using PEDS and paediatrics developmental assessment in children born very preterm at 4-years corrected age for prematurity compares favourably with Glascoe's norming sample. The lower agreement seen in the 2-year age group limits the utility of PEDS to be used as a screen for disability at an age when early intervention may be useful. The PEDS questionnaire is designed and normed for the general paediatric population, and it is not clear if parents of children born very preterm may have interpreted the PEDS questionnaire in relation to their satisfaction with their child's developmental progress rather than their child's functional ability.