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Brief Reports Indian Pediatrics 2000;37: 986-989 |
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Determinants of Follow-up in an Early Intervention Program in High-Risk Babies |
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The effectiveness of early intervention programs in improving developmental out-comes and enhanching family functioning, has been highlighted by research studies(1,2). In India where medical resources are scarce and overburdened, families become an important source of care that improves developmental outcomes. For early intervention to be effective, it has to be regular and the issue of compliance is crucial. The objective of the present study was to examine the compliance in an early intervention program for high-risk babies and to determine factors affecting it.
The subjects were high-risk babies who were discharged from the special baby care unit of the Department of Pediatrics, Goa Medical College over a period of 22 months (March 1997-December 1998). The high-risk criteria were birth weight below 1800 g; maturity below 34 weeks; presence of moderate or severe birth asphyxia, meconium aspiration, septicemia, meningitis, hyperbilirubinemia (at exchange transfusion levels), hypoglycemia, seizures or congenital anomalies. At discharge, the babies were called for follow-up to the weekly Early Intervention Clinic held in the OPD, where a detailed history was obtained, followed by a medical, growth and neuro-developmental assessment. An adapted home based program, structured on the Portage early education program(3) was used to guide the parents in child stimulation. The baby was called for subsequent follow-up at 4-6 week intervals. Postal reminders were sent to each family about 2 weeks before the next appointment. At each subsequent visit, assessment of growth and development was done and the Portage system guidelines were used for developmental programming. Babies who completed one year of follow-up were considered as Follow-up cases. Babies that dropped out at any time during the first year of life were labeled as dropout cases. Growth data is presented at the time of birth, which was the only common age at which all the babies were seen. Intrauterine growth retardation defined as weight below the 10th centile for gestation was determined using the charts of Lubchenco et al.(4). Data for development has not been presented in this study as there is no follow-up data available on the cases that dropped out, since no home visits were done.
Three hundred and sixty babies entered the program. One hundred and ninety five (54.2%) of 360 babies failed to come for their follow-up appointments in the first year of life, while 68 (18.9%) of babies had completed one year of age. Sixty seven per cent of the babies dropped out within the first 3 months, 19% between 4-6 months, 10% between 7-9 months and 4% after 9 months of follow-up. The mean number of visits in the group of babies that dropped out was 1.1 (Table I). A comparision of socio-demographic variables for the two groups of babies who dropped out or came for follow-up till 1 year of age is shown in Table I. Information regarding parental education was not available in all 263 babies. Clinical variables such as presence of prematurity, intrauterine growth retardation, meningitis, birth asphyxia, hypo-glycemia, hyperbilirubinemia, congenital ano-malies, apnea, and seizures did not differ in the two groups. Univariate analysis of factors affecting compliance showed that parental education was a strong predictor of follow-up. Using multiple logistic regression the father's education was the only statistically significant predictor of follow-up (Table II). Factors such as distance of the child's home from the high-risk clinic, the number and type of risk factors present, gender or religion were not significantly associated with dropout.
The above study attempted to look at the determinants of follow-up over one year in an early intervention program for high-risk babies. Over 50% of the babies who had enrolled in the program, dropped out within the first year, most often after the first visit. This is a much higher figure compared to the drop out rate of 9% over 3 years reported recently(5). Other studies(6,7) have emphasized the significance of a social worker in reinforcing continuation of care for high-risk babies following discharge. In this study, the absence of a full-time trained social worker as part of the team was deeply felt. The high dropout rate is also worrying as these at-risk babies who could benefit most from early intervention and nutritional advice did not avail of the program. The question is whether the babies were not coming because they were dying. Parameters associated with a greater possibility of mortality such as increased number of high-risk factors, prematurity, intrauterine growth retardation and longer duration of hospital stay, were not more frequently seen in the babies that dropped out. Contrary to expectations, drop out was not dependent on the distance the family lived from the hospital, on the sex or religion of the baby or on the high-risk diagnosis. The only socio-demographic para-meter that demonstrated a strong linkage with follow-up was parental education. Both mother's and father's education were important and after adjusting for each other, higher paternal education was more strongly associated with better follow-up rates. It appears that the paternal decision-making role had a greater bearing on the likelihood of follow-up than the education of the mother. There has been ample demonstration that maternal literacy is inversely related to infant mortality(8). The focus of child-directed programs in India on the mother and her child-rearing role has dramatically augmented the status of child health in our country. However, one must not neglect factors like decision making and family hierarchical structure that influence the health-seeking behavior of families. Therefore it would be prudent to include fathers too in the promotion of child health. The inclusion of a social worker on the high risk follow-up team is a vital link between families and doctors. Thus in conclusion, in any follow-up program for babies at risk for developmental delay, particular attention must be given to ensure that at the very first visit, the fathers that are least educated are convinced of the benefits of early intervention. One does not get a second chance to make a first impression. Table I__Comparison of Variables in Follow-up and Drop-out Babies.
Table II__Multivariate Analysis of Significant Factors Associated with Drop-out
*Continuous variable of years of education
The authors would like to thank the residents of the Department of Pediatrics, who diligently cared for all the babies that were part of this study. Contributors: NdeS conducted the study and was responsible for data collection and drafting the paper, VP directed the research aspects and performed the statistical analysis. PD's and HBR provided guidance during the study. Funding: Child Relief and You (CRY), Mumbai, through the CRY-Rippan Kapur Fellowship (1997-98) awarded to NdeS. Competing interests: None stated.
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