Impact of Medical Counseling Program on Quality of Life in Children withNeuromuscular Diseases and their Families

Abstract

Introduction: Neuromuscular diseases affect any part of the nerve and muscle. They may be genetically determined, congenital or acquired .These disorders include motor neuron diseases such as spinal muscular atrophy, peripheral neuropathy, neuromuscular junction diseases and muscle affection. Unfortunately, most neuromuscular diseases (NMDs) are incurable diseases. However, an effective rehabilitation program can help maintain a patient’s quality of life (QOL), as well as maximize the patient’s physical and psychosocial functions. An effective rehabilitation program can also minimize secondary medical co morbidity, prevent or limit physical deformity, and allow the patient to integrate into the society. Objectives: Our study was done to improve the quality of life of patients with neuromuscular diseases and their families. Methods: This was a prospective, interventional and uncontrolled study conducted at Abo Reesh teaching hospital between January 2015 - December 2015. The study was carried on infants, children and adolescents suffering from neuromuscular diseases and they were attending neurology clinic throughout one year. Sixty patients were selected from outpatient clinic with well-known diagnosis of NMD variant who were grouped according to their age (3-5) per group mothers also grouped (6-10) per group. The study was achieved through application of medical counseling program through 24 sessions once per week lasting for 6 months. Pre-and post program an individualized neuromuscular quality of life questionnaire was applied to assess the effectiveness of the program.