A Novel Approach to Patient Education: Creating a Mobile Web Application for Patients with Spinal Cord Injury
Mekki M, Marzloff G, Huang V, Bryce T
Mount Sinai Hospital, Icahn School of Medicine, New York, NY, USA
Patients with Spinal Cord Injury (SCI) are exposed to a lot of new information during their inpatient rehabilitation course. While they are trying to adjust physically and emotionally to their new level of functioning, they also have the daunting task of learning and understanding the most they can about SCI. Because of the immediate need for patients to deal with the secondary effects of their SCI, including but not limited to bowel, bladder, and respiratory management, spasticity, skin care, and new modes of mobility, patients with SCI cannot always take the time to learn and understand the mechanism behind these secondary effects.
In order to give patients a better understanding about what SCI is and its secondary medical effects, inpatient rehabilitation optimally should include an educational component to teach the basics. Formal and informal teaching sessions and reinforcement by the entire care team can be very useful, especially when supplemented by written materials. Some of the most well-known resources, available in hard copy or online, include the Yes, You Can! Guide to Self-Care published by the Paralyzed Veterans of America, the Consortium For Spinal Cord Medicine Consumer Guides, and the Christopher and Dana Reeve Foundation published Paralysis Resource Guide. Nevertheless the information presented in conventional written formats may not be the optimal and most stimulating method of presenting and reinforcing the material in this digital age where there is widespread use of mobile applications (apps) by the people who are often the most affected by SCI.
We undertook this project in order to standardize and collect in one place all the educational materials presented and referenced in an educational program at a large SCI rehabilitation center and to present it in a more accessible fashion than is typical during and after acute rehabilitation.
We created an app as a base of knowledge for the patient with SCI to reference at any point during the rehabilitation process that can updated with new information easily, and can be accessed by smart phone rather than having to locate a particular consumer guide or chapter in a book. We used CARF requirements and the Yes, You Can! Guide to Self-Care published by the Paralyzed Veterans of America as guidelines. The topics covered include:
- The Etiology of SCI
- Medical Sequelae
Muscle and Bone
Sexual function and Reproduction
Health and Wellness
Aging with SCI
- Addressing Function
Community Integration and Transitions
Durable Medical Equipment
Personal care assistants
- Psychosocial Issues
Adjustment to Disability
Family, Peer, and other Social Supports and Counseling
Your Rights and Resources
This novel mobile app approach changes the paradigm for presentation of educational materials to patients with SCI.
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