Date: February, 10 2022

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The World Health Organization defines quality of life as an individual’s perception of his or her position in life in the context of the culture
and value systems in which he or she lives, and in relation to his or her goals, expectations, and standards. Applied to spina bifida, the
debate on quality of life bears historic significance and has helped shape policies toward the care of the disabled. This debate laid the
foundation of the discipline of bioethics, and the practice of accrual of quality of life data in the disabled. The quality of life scores thus
obtained are used to inform decisions made both by family members and healthcare practitioners. However, the evolution of scores specific
to the condition took much longer, and many physicians are still not aware of spina bifida-specific scores. Bearing this in mind, this thesis is
based on the disease-specific Parkin-score, not heretofore published in Indian literature pertaining to spina bifida.1 The underlying goal of
this study is to assess the change in quality of life after surgery for spina bifida using the disease-specific Parkin score. Future studies on
the disease may be conducted using this score after adapting it to the Indian setting.

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The World Health Organization defines quality of life as ‘an individual's perception of his or her position in life, in the context of the culture
and value systems in which individual lives and in relation to goals, expectation, standards and concerns’ (The WHOQOL Group, 1998).

https://academic.oup.com/heapro/article/24/1/36/678074/