Original Article
Quality of Life and Psychosocial Functioning of HIV Infected Children Sebi Das, Aparna Mukherjee1, Rakesh Lodha1 and Manju Vatsa College of Nursing and 1Department of Pediatrics, All India Institute of Medical Sciences, Ansari Nagar, New Delhi, India
ABSTRACT Objective. To assess the quality of life (QOL) and the psychosocial problems of HIV infected children. Methods. The present study was a comparative, cross-sectional survey conducted in the clinic of a tertiary care hospital in north India from July- December 2007. Children suffering from cystic fibrosis (CF) were chosen as a comparison group. Children ≥ 6 yr of age with HIV infection or Cystic Fibrosis, with no acute illness at the time of survey were included in the study. Quality of life of the enrolled children was assessed by using the Pediatric Quality of Life InventoryTM (PedsQLTM). Pediatric Symptom Checklist (PSC) was used for assessing the psychosocial problems in the enrolled children. Results. Forty one HIV infected and 30 children with cystic fibrosis were enrolled. According to child self -report in the PedsQLTM 4.0, the difference of perceived physical health status between the two study groups was statistically significant (p=0.04), with HIV infected children demonstrating a better QOL in this domain. A significantly greater number of children with cystic fibrosis (8/30 or 26.67%) suffered from psychosocial problems as compared to HIV children (3/41 or 7.32%) [p=0.026]. Conclusions. The quality of life and psychosocial functioning is reasonably good in children with HIV infection. Thus, we should strive to maintain and optimize the overall quality of life of these children so that they can have a productive and meaningful future. [Indian J Pediatr 2010; 77 (6) : 633-637] E-mail:
[email protected]
Key words: HIV; Cystic fibrosis; Quality of life; Psychosocial problems
With the advent of HAART and other advancements in HIV care, there has been a significant change in the pediatric HIV epidemic. The present patient population lives longer and remains healthier. 1 Pediatric HIV disease now parallels other chronic illnesses and longterm survivors of pediatric HIV are in many ways like their peers with other chronic illnesses. Because children are now living longer with HIV, the next challenge is to optimize the health of these children. It is well known that chronic physical disorders in children lead to high incidence of psychosocial adaptation problems and impaired quality of life. Such impairment results from adverse developmental impact of having a long term illness, psychosocial stress on the family, and repeated encounters with medical personnel. 2,3 However, a wide variability has been observed in the
capacity for adaptation in children with chronic conditions, thereby making it imperative to identify those who are functioning in the maladjustment range. There are few studies in the pediatric population which have intended to identify psychosocial dysfunction and quality of life related issues in HIV infected individuals, especially in Indian setting which has a large population of HIV positive children.
Correspondence and Reprint requests : Dr Manju Vatsa, Principal, College of Nursing, AIIMS, Ansari Nagar, New Delhi-110029, India.
The present study was a comparative, cross-sectional survey conducted in the clinic of a tertiary care hospital in north India from July- December 2007. Convenience sampling was done amongst children ≥ 6 yr of age with HIV infection or Cystic Fibrosis, with no acute illness at
[DOI-10.1007/s12098-010-0087-0] [Received July 30, 2009; Accepted March 4, 2010]
Indian Journal of Pediatrics, Volume 77—June, 2010
This study was undertaken to assess the quality of life (QOL) and the psychosocial problems of HIV infected children. Children suffering from cystic fibrosis (CF) were chosen as a comparison group as CF is a well known chronic disease of children and adolescents. MATERIAL AND METHODS
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Sebi Das et al the time of survey. Only those children and their parents who understood Hindi or English were included. The study protocol was approved by the Ethics Committee of the institute. Prior written consent was taken from parent or guardian. The clinical and immunologic staging for HIV infected children was performed as per the WHO guidelines. 4 CF Clinical Score was calculated for children with cystic fibrosis.5 Socio- demographic and clinical profile data were collected using structured interview. Quality of life of the enrolled children was assessed by using the Pediatric Quality of Life Inventory TM (PedsQLTM). 6 This is a modular and multidimensional child self-report and parent proxy-report instrument for measuring health-related quality of life (HRQOL) in children and adolescents of 5-18 yr [stratified into age groups: Young Children (5-7 yr), Children (8 -12 yr), Teens (13-18 yr)]. For child self-report, cut-off scores for at-risk status have been reported earlier: Total Scale score of 69.7, Physical health score of 72.98, and Psychosocial health score of 66.03. For parent proxy-report, the cut-off scores for at risk QOL are: Total Scale score of 65.4, Physical health score of 63.28, and Psychosocial health score of 64.38.7 The tool was translated into Hindi with the help of experts and checked by retest method. Reliability coefficient of 0.8838 and 0.7819 were obtained for PedsQL Parent proxy report and Child report, respectively.
Pediatric Symptom Checklist (PSC) 8 was used for assessing the psychosocial problems in the enrolled children. The PSC is a 35-item screening questionnaire that is completed by either of the parents. This tool was translated into Hindi with the help of experts and checked with re-test method. Re-test Scale reliability coefficient was 0.8930. Statistical Analysis Statistical Analysis was done by STATA 9.1.Wilcoxon Rank sum Method / Student’s ‘t’ test and Chi square / Fisher Exact test were used for comparing variables as applicable. P value of less than 0.05 was considered statistically significant. RESULTS A total of 41 HIV infected and 30 children with cystic fibrosis were enrolled. The comparative demographic and anthropometric profiles of the enrolled children are given in table 1. Both the groups were comparable in respect to age, gender, religion, education, family income and anthropometric measures, whereas they were not comparable in respect to age at diagnosis, duration of illness, type of family, residence, with whom the child was living with and number of support persons.
TABLE 1. Socio-demographic and Anthropometric Profile of the Enrolled Children HIV infected children (N=41) Current age (yr) Median (range) Age at diagnosis (month) Median (range) Duration of illness (month) Median (range) Gender Male Educational Status (going to school) Type of family Nuclear Extended Total family income/month Rs 25000 Child living with Both parents Single parents Any other Support persons 1-2 3- 4 5- 6 Z score of height Normal- mildly stunted Moderately- severely stunted Z score of weight for age Normal- Mild underweight Moderately underweight
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9 (6 – 16) 84 (12 – 132) 36 (3 – 96)
Children with Cystic fibrosis (N=30)
p Value
11.75 (6 – 19) 42 (2 – 120) 78 (18 – 210)
0.082 0.002
