Adapted Test of Neuromuscular Disorders (ATEND)

 The ATEND is a functional motor outcome assessment for individuals with a neuromuscular disorder who are not able to sit or transfer out of the wheelchair

Qualitative review of experienced difficulties and clinical reasoning associated with testing of non-infants was interrogated to determine themes by this expert committee. The only validated scale for very weak individuals is the Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) developed for SMA1 infants. This assessment was developed based on our experience with the CHOP ATEND, a modified scale constructed from the CHOP INTEND. For older, weaker individuals with severe contractures, motor assessments are a challenge due to limitations in the ability to safely transfer or lie prone. Currently, there is no available motor assessment sensitive to capture changes in this older chronic population. Work is on-going to collect data to further develop and refine the scale properties with future plans for modern psychometric analysis.

Initial pilot testing of items were performed to determine feasibility in various types of wheelchairs and clinical severity levels including positioning, scoring/administration challenges with the goal of creating a scale to encompass a wide spectrum of wheelchair types/supports needed for individuals who have severe weakness and contractures.

Scale Description and Development

• This is a 14 item assessment based on testing in the wheelchair in 2 positions: 1. Semi-Reclined 2. Supported Sitting
• An iterative approach based on CHOP ATEND items was performed with qualitative item review of experienced administration/scoring challenges and clinical reasoning associated with testing of non-infants was interrogated to determine themes. This assessment was developed based on our experience with the CHOP ATEND, a modified scale constructed from the CHOP INTEND. We reviewed 27 CHOP ATEND assessments performed in the wheelchair and found items that were not feasible to administer in an older, chronic population including rolling, side lying reaching, suspended hip and knee flexion and head and pelvic extension in prone suspension.
• The final ATEND has 14 items ranging from cervical, trunk strength to distal strength including arm and hand function based on contractures and the emerging changing phenotype from older, weaker individuals with neuromuscular disease. Test construct is based on a total score of 46.

The ATEND is recommended to be performed in combination with other clinical test measures  including patient reported outcome measures such as the EK2, EAT10, Voice Handicap Index (VHI), Physical Activity Disability Survey (PADS-R) or other relevant patient reported outcome measures

Future directions

We are currently collaborating with other institutions to collect data for further development of this instrument, please contact Tina Duong if you are interested in this data collection process.

Development and Validation for the Adult Test of Neuromuscular Disorders (ATEND), a Functional Motor Outcome Measure
Protocol ID: 58208
NCT: NA
PI: Dr. John W. Day
Study coordinator: Whitney Tang, whitneyt@stanford.edu, 650-475-6580
Purpose: This is a multi-center, prospective, observational study aimed to develop and validate a wheelchair based functional motor outcome measure for chronic, weak, non-ambulatory individuals diagnosed with a neuromuscular disease.
Status: Active