Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach

Abstract

The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement. Targeted national strategies and the incorporation of ATD indication criteria in international ALS treatment guidelines are urgently needed to overcome these barriers.

Usability of Eye-Gaze Controlled Computers in Sweden: A Total Population Survey

“…A few survey studies in different countries have indicated an excessively low access rate of eye-gaze technology because not all individuals with severe disabilities in need of such devices are afforded access to it. For example, a survey study of individuals with ALS in Germany found a rejection rate of 48% by health insurance institutions concerning communication devices such as eye-gaze controlled computer [32]. A survey in the Netherlands on families with a child with Rett syndrome [33] and a study of speech-language therapists in Sweden who support individuals with Rett syndrome [34] show that not all of these individuals have an opportunity to try eye-gaze technology to see if they may benefit from its use.…”

Communication Matters—Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis

“…As Donegan et al ( 88 ) report, the national health service of Italy started providing ETCS for ALS-patients several years ago because of increasing awareness brought by the research, but this is not consistent practice. For Germany, Funke et al ( 89 ) found as a result of a cohort study on a case management program for ALS-patients that only 61% of AAC devices procured by the treating neurologists were finally delivered to the patients, which might be in fact an overestimation for the general population since the study was conducted in specialized ALS centers. The main cause of failed provision with a HT-AAC device was rejection by the health insurance, followed by rejection by the patient and patient's death.…”

“…The mean latency of provision was 93 days, a long period of time for people not able to communicate without the device. The authors speculated that especially decisions over expensive assistive devices are guided by financial considerations at the expense of patients' wellbeing ( 89 ).…”

“…However, family caregivers of severely disabled patients' are in general a highly burdened and overloaded population that has to be considered and supported in the palliative care ( 15 ) and in particular concerning patients' supply with HT-AAC. Beside and in connection with the discussed low quality of life and wellbeing of next of kin, it is known that severe diseases like ALS have far-reaching effects on a social system beyond the index patient; and it is therefore essential to study impacts on the caregivers and their perspectives separately from patients' perspectives ( 89 ). While HT-AAC technologies can help to prevent the patients' social networks, assuming the role of the caregiver often results in a loss of freedom and of time and energy for self-care as well as in a change of life plans.…”

Patient-Reported Outcome of Physical Therapy in Amyotrophic Lateral Sclerosis: Observational Online Study (Preprint)

“…The internet platform of APST encompassed the service of coordinators specialized in case management, a tailored digital management platform and assessment tools for selfassessment, services, therapy and assistive devices [11]. The patients and their caregivers were granted access to the APST platform through an account.…”