Health Related Quality of Life in Indian Children with Cystic Fibrosis.

ABSTRACT

Objective: This study was devised to translate Cystic Fibrosis Questionnaire-Revised to Hindi and administer it to Indian children and adolescents diagnosed with cystic fibrosis. Design: Cross-sectional study. Setting: This study was carried out in cystic fibrosis patients attending Pediatric Chest Clinic of a tertiary-care hospital in Northern India from July 2012 to December 2012. Participants: 45 children (6-13 years) and their parents, and 14 adolescents. Patients with unstable health in the past two weeks were excluded. Intervention Cystic Fibrosis Questionnaire- Revised translated in Hindi was administered. Clinical evaluation and scoring, throat swab cultures and spirometry were also done during the same visit. Main Outcome Measures: Health Related Quality of Life scores were the primary measures, and clinical scores, swab cultures and spirometry were secondary measures. Results: Cronbach’s alpha ranged from 0.020-0.863.The Factor analysis indicated that most test-items correlated more with competing scales than the intended scales. Convergence between self and proxy-rating was found to be dependent on the domain. The Cystic Fibrosis Questionnaire- Revised scores correlated well with clinical scores (r=0.65,P=0.011), Pseudomonas spp culture data and pulmonary function tests. There was an inverse relation between Health Related Quality of Life scores and age at diagnosis (r=-0.339, P=0.02). Conclusions: Hindi versions of Cystic Fibrosis Questionnaire- Revised Child, Adolescent and Parents’ instruments will act as an important step towards data on Health Related Quality of Life of Indian patients with cystic fibrosis.