PARENTAL PROJECTION OF QUALITY OF LIFE DOES NOT REFLECT CLINICAL RISK OF NEURODEVELOPMENTAL SEQUELAE IN CHILDREN ADMITTED TO THE NEONATAL INTENSIVE CARE UNIT

摘要

>BACKGROUND: Newborns born prematurely or with congenital malformations are at risk of neurologic sequelae. Critical decisions are frequently taken by the healthcare professionals with the family based on predictions of functional impairments and their impact on future quality of life (QOL). No known study has examined how parents envision this future QOL for their child. >OBJECTIVES: To delineate parental perspective of the future quality of life of infants hospitalized in the NICU with high risk of neurodevelopmental sequelae. >DESIGN/METHODS: Prospective multicentre study conducted using a questionnaire validated from previously identified qualitative themes of parental projection of QOL. Perspectives from a cohort of parents of neonates at risk of severe neurodevelopmental outcome as defined by follow-up referral criteria (<29 weeks, Sarnat 2, IVH 3, PVL, severe neurological condition, severe genetic abnormality, exchange transfusion, ROP 3, diaphragmatic hernia or any condition having significant neurological impact) were compared with a control group including parents of all other neonates admitted to the NICU. Questions include likert scales (1 to 7) and yeso answers. Variables were analyzed using Chi² test. >RESULTS: 107 questionnaires were returned (88%). 58 (54%) cohort group and 49 (45%) control. Both groups had similar income and level of education. Parents of cohort group projected more long term financial impact on the family (p=0.012). There were no statistical differences between the groups on projections of: physical and mental difficulties, pain and discomfort, longevity of life, having a chronic condition, feeling of difference and ability to cope, happiness and QOL, role in society, having friends and a family, ability to live alone and emotional impact on the family. Both group had low concernson perspective of risk of long term physical and mental difficulties, pain or child feeling different (mean score 1.7-2 out of 7), and rated high on childs happiness, QOL and ability to cope (mean score 6.4-6.6 out of 7). Both cohort and control groups envisioned sequelae with moderate rating on emotional impact on the family (mean score 2.4-3.2 out of 7). 100% of parents projected that their child would be self-sufficient for activities of daily living and able to find employment. >CONCLUSION: Parental projection of future QOL of infants hospitalized in NICU is not associated with known risks of neurodevelopmental sequelae. Most parents predict overall a good future quality of life for their child. Parental concerns focused more on the impact on the family.