Challenges in comprehensive management of spinal cord injury in India and in the Asian Spinal Cord network region: findings of a survey of experts, patients and consumers

Study design: Online survey. Objectives: To understand the prevailing scenario of the comprehensive management of spinal cord injuries (SCI) in India and in the Asian Spinal Cord Network (ASCoN) region, especially with a view to document the challenges faced and its impact. Setting: Indian Spinal Injuries Centre. Methods: A questionnaire was designed which covered various aspects of SCI management. Patients, consumers (spinal injured patients discharged since at least 1 year) and experts in SCI management from different parts of India and the ASCoN region were approached to complete the survey. Results: Sixty patients, 66 consumers and 34 experts completed the survey. Difference of opinion was noticed among the three groups. Disposable Nelaton catheters were used by 57% consumers and 47% patients. For reusable catheter, 31% experts recommended processing with soap and running water and 45% recommended clean cotton cloth bag for storage. Pre-hospital care and community inclusion pose the biggest challenges in management of SCI. More than 75% of SCI faced problems of access and mobility in the community. Awareness about SCI, illiteracy and inadequate patient education are the most important factors hindering pre-and in-hospital care. Inadequate physical as well as vocational rehabilitation and financial barriers are thought to be the major factors hindering integration of spinal injured into mainstream society. Strong family support helped in rehabilitation. Conclusions: Our study brought out that SCI in India and ASCoN region face numerous challenges that affect access to almost all aspects of comprehensive management of SCI.