The patient survey is a nationwide, systematic survey of 200 patients with amyotrophic lateral sclerosis (ALS), designed to gather important insights into patient satisfaction with percutaneous endoscopic gastrostomy (PEG) and medication administration via a PEG tube.
Medication Administration via PEG
Pharmacotherapy for ALS is particularly complex when the disease is accompanied by progressive and severe swallowing difficulties (dysphagia) as it progresses. A particular challenge arises with PEG tube feeding, which becomes necessary due to severe dysphagia. PEG tube feeding presents both sociomedical and pharmaceutical challenges, even though it enables safe nutrition and pharmacotherapy. Despite the prevalence of ALS-related dysphagia, there have been insufficient systematic studies to date on PEG placement and on pharmacotherapy for ALS via a PEG.
Patient Survey on PEG
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:
- Assessment of Treatment Satisfaction and Treatment Experience with a PEG in ALS
- Recording the dosage form of the ALS basic medication riluzole, as well as the symptomatic medications used to control or alleviate ALS-related symptoms
- Recording Treatment Experience with Medication Administration via the PEG
- Tracking the Course of ALS Using the ALS Functional Rating Scale (ALS-FRSr)
Participation in the PEG Patient Survey
To participate in the survey, the following criteria must be met:
- Minimum age: 18 years
- Diagnosis of ALS
- Feeding via a PEG
- Treatment with the ALS first-line medication Riluzole
- Participation in the ALS Pharmacy Program, with medication data recorded via the “Ambulanzpartner” digital management and research platform
Procedure for the PEG Patient Survey
ALS patients who have a PEG and are participating in the ALS Pharmacy Program are invited to take part in the PEG patient survey.
The PEG patient survey is conducted in the form of a questionnaire. The questionnaire can be completed in various ways:
- Sending by post, independent completion of the questionnaire and return with stamped envelope
- Survey conducted during a visit to an ALS outpatient clinic
- Online survey via the Ambulanzpartner research platform (“Digit-PEG” in the Surveys tab)
Duration and scope of the survey
It takes about 10 to 15 minutes to answer all the questions. Each patient is invited to participate in the survey twice, 4 months apart.
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 PEG Patient Survey
The results are anonymized and scientifically evaluated without drawing conclusions about individual persons. The data are of great importance for gaining insights into satisfaction with the PEG and medication administration via the PEG. The plan is to present and discuss the results at scientific conferences. Summaries of interim or final analyses will be sent in the form of a “newsletter” to patients with ALS who are registered on the Ambulanzpartner platform.
Contact
Study coordination
Phone: 030 – 810 314 34
Email: forschung@ambulanzpartner.de