Tropical Journal of Pharmaceutical and Life Sciences- TJPLS Journal (ISSN : 2349-9818 

• Tarun SwamiGovernment College of Nursing (SMS) Jaipur, Rajasthan, India

DOI: https://doi.org/10.61280/tjpls.v13i3.303

Keywords: 

Self-instructional module, Rare diseases, Duchenne muscular dystrophy, Spinal muscular atrophy, Knowledge assessment, Pre-Experimental research design.

Abstract

Rare diseases such as Duchenne Muscular Dystrophy and Spinal Muscular Atrophy are serious genetic disorders that mainly affect children and lead to long-term physical disability and increased care needs. Early identification and appropriate nursing management play an important role in improving the quality of life of affected children. Nursing officers are often the first healthcare professionals to interact with these children; therefore, adequate knowledge is essential. This study aims to assess the effectiveness of a self-instructional module in improving knowledge regarding selected rare diseases among nursing officers working at a selected government hospital in Jaipur, Rajasthan.

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References

Development and economic evaluation of a patient-centered care model for children with Duchenne’s Muscular Dystrophy: A quasi-experimental study protocol (Preprint). (2024). ResearchGate. https://doi.org/10.2196/42491

Global epidemiology of Duchenne muscular dystrophy: An updated systematic review and meta-analysis. (2024). ResearchGate. https://doi.org/10.1186/s13023-020-01430-8