Between guidelines and reality: expert neurologists’ perspectives on structural resources for ALS care in Germany

Amyotrophic lateral sclerosis (ALS) is a fatal motor neuron disease, leading to an inexorable decline in voluntary muscle function, and finally to death within 2–4 years. The provision of professional ALS care is a multifaceted and continually evolving challenge, including the management of symptoms, advanced care planning, and the provision of psychosocial support. The core objective is to minimize suffering by optimizing symptom management and preserving quality of life. European and German guidelines recommend a specialized, multidisciplinary, and multiprofessional team, including collaborations with palliative care providers. While this is a validated approach to ensure optimal care and patient satisfaction, real-world experience suggests that the German healthcare system may not fully meet these requirements. This study assessed resources of specialized ALS centres in Germany, focusing on the structural prerequisites for the provision of multidimensional care and collaboration with specialised palliative care (SPC) providers. A mixed methods design was used, comprising remote video interviews with neurologists specialized in ALS, including standardised questions and an open section. Sixteen neurologists representing their ALS centres were interviewed. The findings indicated a substantial discrepancy in the allocation of time and personnel resources among the centres. The majority of interviewees regarded resources to be inadequate and reported deficiencies in multidisciplinarity and networking. Consequently, certain components of ALS care - particularly psychosocial concerns - have been documented as being occasionally disregarded due to limitations in time or human resources. A number of interviewees expressed criticism regarding the inadequate access to and suboptimal collaboration with SPC providers. The compensation for patient care and interprofessional communication was not perceived as cost-effective. Our results suggest that limited resources may prevent the provision of guideline-based care for people living with ALS and their families, even in specialized outpatient clinics. To facilitate the delivery of comprehensive care by ALS centers throughout the entire disease course, the establishment of operational standards concerning their multi-professional staffing and adequate compensation is imperative. Further research is needed to develop feasible concepts of how specialized neurological palliative care can be made reliably accessible to all patients in need.