Lay summary by Akanksha Jangid, reviewed by Dr Lydia Castelli and an MND lay panel
Background
Motor Neuron Disease (MND) causes progressive muscle weakness, including weakness of neck extensor muscles that help to keep the neck straight. This weakness of neck extensors causes Dropped Head Syndrome or DHS, which can cause problems in eating, swallowing, drinking, and communication. Neck collars prescribed to these patients often limit their movement and cause discomforts like skin irritation and damage, pressure ulcers, and muscle degradation. This often leads to them being rejected by the patients. In this survey-based study, the authors tried to understand the user’s experience with these collars and the difference between their present and desired use.
Why is the study important?
This study aims:
- To assess the experience of people with MND when using these off-the-shelf collars, their advantages, drawbacks, and unmet needs.
- To understand the current and desired use of collars for people with MND and address any areas of improvement.
What did the authors do and how did they do it?
The authors designed an online survey with 18 questions divided into three sets to be filled by 38 participants. The questions were designed to understand the participant’s prior experience with neck collars, their current and preferred use, any discomfort or weakness they experienced with their current collars and the importance of design factors. The survey was created to be easily accessible for all participants, including those using Eyegaze technology.
What are the results?
The results show that 45% of the participants were currently using a collar, while 74% felt a need for one. The reasons for not wearing a collar were discomfort (51%), a feeling of being too restrictive (44%), and not considering it necessary (4%).
The commonly used collars among the participants were Headmaster and foam collars, with a reported use of 11% for each. Interestingly, 46% of participants did not find the collar they used in the list.
Participants used collars for different activities, but the largest disparity was in showering/bathing, with 0% reported use, followed by personal care and kitchen activities, with 27% reported use for each. It shows that the current collars have limited use for people living with MND.
When assessing the features of the current collar, comfort was the most important feature, ease of putting on and off was considered the best feature, while appearance was rated as the worst.
The most common areas of discomfort were reported to be around the neck with the chin being the most common (35%) and the right side the least common (9%).
Finally, 96% of participants desired a better-fitting collar.
What do the findings mean going forward for people with the disease?
The collars prescribed to MND patients are designed to immobilise patients with traumatic injury, both pre-and post-operative. These collars restrict neck movements and do not address the needs of people with MND. The study found that patients with MND found these collars restrictive and would prefer a collar that allows flexibility of movements, is comfortable to wear for extended periods, and is cosmetically appealing. Hence, collars should be designed in a way that is tailored specifically to meet the needs of people with MND. These collars will benefit not only MND patients but also other people who require neck collars to support their neck and correct neck weakness.
This study can be found at
https://www.sciencedirect.com/science/article/pii/S1936657424000074?via%3Dihub
Paper title
Understanding neck collar preferences and user experiences in motor neuron disease: A survey-based study
Lead author
Samuel D.J. Spears, Nikhil Sharma
Publication details including date of publication
Published in Disability and Health Journal. Page 101585. Available at: https://doi.org/10.1016/J.DHJO.2024.101585.