Contributor(s)

Cristina Angelini, SC Riabilitazione Intensiva Ospedaliera-(C.O.R.I.), Ospedale di Passignano sul Trasimeno, USL Umbria 1, Perugia, Italy

Francesca Graziani, SSD Riabilitazione Intensiva Neurologica / UGCA, Azienda Ospedaliera di Terni, Italy

Raffaele Guadagno

Riccardo Magni, Pragma Engineering srl, Perugia, Italy

Maurizio Massucci, SC Riabilitazione Intensiva Ospedaliera-(C.O.R.I.), Ospedale di Passignano sul Trasimeno, USL Umbria 1, Perugia, Italy

Description

Dysphagia has negative consequences for the quality of life of people who have had a neurologic disease (i.e. exitus of stroke, multiple sclerosis, Parkinson disease) and their family members or caregivers. Indeed, it can be very burdensome to manage these patients at home about modified food consistency and protected food intake postures that clinicians recommend. Digital technology can reduce this care burden by making the instructions and information provided by the rehabilitation team available in video at any time. 

The aim of this project is to make available a web platform with a panel of about 25 sample videos that are easy to understand, with simple and short verbal instructions (accessibility for people with aphasia or non-Italian speaking caregivers) and easily accessible via a single link or QR code (one for each patient). Clinicians, based on their own clinical and functional assessment, will be able to choose the appropriate content for the individual case, thus building a customised counselling project. 

The patient and/or his or her caregiver, at home, using a PC or a simple smartphone, will only be able to access the content selected for them by the clinical team; anyway, It will always be necessary to contact the service in charge of the patient in the event of an worsening or modification of the clinical-functional situation.

It is a tool that can facilitate management of dysphagia at home, that improves the daily stress of the patient and his or her caregiver, and also reduces possible complications related to dysphagia mismanagement at home.

The tool is going to tackle a sensitive aspect of home-caring: the substantial lack of “supportive” services to address problems in caring their relatives at home. Considering the burden and the responsibility that is normally associated to routinary operations of chronic conditions, it could be envisaged the emerging of new tools (hopefully integrated) as an extension of in-patient care that could relief expectations of home-carers (informal and formal) that are asked to be prepared and “specialised” in daily life operations. The platform is configured as a modern technological support of asynchronous tele-assistance, and is in line with current Italian regulations on telemedicine and telerehabilitation with respect also to the management of sensitive data and professional liability.

We are at the end of a full year trial of the platform with about 100 users and more than 15 professionals (i.e. speech therapists) involved. Result of SUS based questionnaire proposed to professionals is in progress. 

Presenter(s)

Riccardo Magni