Patient survey on eye control glasses for people with ALS

The patient survey on eye control glasses is a nationwide, systematic survey of patients with amyotrophic lateral sclerosis (ALS). The aim of the survey is to gain important insights into expectations of the eye-control glasses as well as experiences and satisfaction following treatment with the innovative aid.


Drive the wheelchair safely with eye control glasses



As a result of ALS, many of those affected suffer complete paralysis of their extremities, especially their hands. A special feature of ALS is the omission of the eye muscles. Even with complete paralysis, the mobility of the eyes remains completely or predominantly intact. On this basis, communication systems were developed many years ago in which the eye movements of ALS sufferers are used to control “speech computers”. It was only a few years ago that further technical progress was made by integrating eye control into glasses. The eye control glasses can be used to control wheelchairs. The application is very diverse and individual. Eye control glasses are generally available in Germany as an aid and can be approved by health insurance companies.


The patient survey on eye control glasses



Patients with a PEG are to be invited to take part in a survey to clarify open research questions. The aim of the survey is to analyze treatment experiences and treatment satisfaction with a PEG as well as experiences of medication administration via a PEG tube. The study has the following objectives:

The study includes the following contents:

• Recording the indication and care pathways for eye control glasses in ALS
• Recording expectations of the eye control glasses
• Recording user experience and satisfaction with the eye-control glasses
• Assessment of ALS disease progression using the ALS Functional Rating Scale (ALSFRS-R-SE)

Participation in the patient survey on eye control glasses


The following criteria must be met to participate in the survey:

• Diagnosis of ALS
• Medical indication for the fitting of eye control glasses
• Participation in the APST care network with recording of care via the digital management and research platform “APST”.

Procedure for the patient survey on eye control glasses


ALS patients who have a medical indication for being fitted with eye control glasses are invited to take part in the patient survey.

The patient survey is carried out in the form of data collection on a questionnaire. The questionnaire can be completed in different ways

• Sending by post and return with stamped envelope
• Telephone survey
• Interview during the visit to the ALS outpatient clinic

Duration and scope of the survey


It takes about 10 to 15 minutes to answer all the questions. Each patient is interviewed twice. One interview takes place at the time of the indication for the fitting of the eye control glasses and a further interview after the innovative aid has been fitted.

Organization and implementation of the patient survey


The patient survey is carried out by APST in cooperation with specialized ALS centers in Germany. The survey is part of the APST register study and has been approved by the ethics committee of Charité – Universitätsmedizin Berlin.


Use of the results of the patient survey on eye control glasses

The results are anonymized and scientifically evaluated without drawing conclusions about individual persons.

The data is of great importance for gaining knowledge about the area of application and satisfaction with the provision of eye control glasses. The results of this survey will be made directly available to ALS patients in the form of a newsletter, published scientifically and used for communication with health insurance companies.

Yours sincerely

Your APST team

Contact
Study coordination

Dr. Dr. Susanne Spittel
Head of Medical Research
Phone: 030 – 810 314 10
Mail: forschung@ambulanzpartner.de