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The impact of psychosocial support on the knowledge and health related quality of life of parents of Indian children with hemophilia
5th World Hematologists Congress
August 18-19, 2016 London, UK
Supriya Phadnis and A Kar
Savitribai Phule Pune University, India
Posters & Accepted Abstracts: J Blood Disord Transfus
Abstract:
Introduction & Objective: There are few studies that measure the impact of psychosocial support on the quality of life of parents of children with hemophilia from low middle income countries. The purpose of this interventional study was to determine the health related quality of life (HRQOL) of parents of children with hemophilia, parent�??s knowledge about hemophilia and its management and to determine whether psychosocial support intervention (PSS) can positively impact these outcomes. Materials & Methods: 133 parents from across Maharashtra state India were provided PSS. Knowledge and practice of management of bleeding was measured using pre-tested structured questionnaires and HRQOL was measured using a validated Peds Quality of Life�?� Family Impact Module (PedsQL�?� FIM) tool. The impact of PSS on these parameters was measured as change occurring from baseline to six months and one year after intervention. Results: There was a significant improvement in knowledge scores immediately after intervention, which remained significantly higher one year after intervention. HRQOL showed statistically significant improvement at six months but reduced to baseline levels one year after intervention. There was significant change in terms of practice of management of bleeding episodes at six months and one year after intervention. Conclusion: PSS resulted in improvement of knowledge and practice of management of bleeding. However, a single psychosocial support intervention did not have any long term effect on the HRQOL of parents. The study suggests the need for introduction of regular PSS for parents of patients with hemophilia in India.