Winners, losers or ties? What game theory contributes to analysing a care network for patients with amyothrophic lateral sclerosis. A pilot project with a mixed-method approach.

Abstract The expansion of palliative care for patients with amyotrophic lateral sclerosis (ALS) developed in a region of North Rhine-Westphalia rather by chance. A specialist palliative home care team was taken aback by the numerous challenges and significant needs of patients, their caregivers and healthcare professional. A pilot study using mixed methods and a theory-based data analysis helped to comprehend the underlying mechanisms in care networks. Semi-structured expert interviews (n = 15), an assessment of 50 ALS patients and a quantitative survey of 196 hospice and palliative care services were conducted to differentiate and refine the patients’ needs. ALS patients have multifaceted needs, including physical symptoms, psychosocial and financial issues and/or spiritual needs. Addressing these comprehensive needs requires complex solutions. Healthcare professionals demonstrated a greater willingness to provide additional support and allocate more time for appointments with ALS patients compared to patients with other diseases. Sociologically, a network's effectiveness is based on jointly agreed goals. So, social networks and game theories demonstrate that shared network goals are associated with knowledge, network size, heterogeneity, interrelations, and communication. Therefore, it is possible to develop a comprehensive care concept and a regional care network for ALS.