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.

Winners, losers or ties? What game theory contributes to analysing a care network for patients with amyothrophic lateral sclerosis. 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What game theory contributes to analysing a care network for patients with amyothrophic lateral sclerosis. A pilot project with a mixed-method approach. Gülay Ates, Birgit Jaspers, Patrick Weydt, Martin Mücke, Lukas Radbruch This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4018682/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version 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. Biological sciences/Neuroscience/Diseases of the nervous system/Amyotrophic lateral sclerosis Health sciences/Health care Health sciences/Health care/Health services/Palliative care amyotrophic lateral sclerosis (ALS) palliative care gaps in home care case management care coordination game theory Figures Figure 1 Figure 2 Figure 3 Figure 4 Background ALS patients suffer from a range of physical symptoms, psycho-social issues and spiritual needs through their disease trajectory. A neurological guideline for diagnosis and treatment of ALS recommends (early) integration of palliative care. ( 1 ) Non-medical interventions such as physiotherapy, occupational or speech therapy and provision of assistive devices or technology for daily living are additional services to maintain quality of life. As the disease progresses and the symptom burden increases ( 2 ), patients are confronted with a large number of different HCPs and services. ( 3 ) At a specific point in their disease progression, complex problems and exacerbations may require intensive home care support, sometimes at very short notice. (Fig. 1 ) Effective management is needed to keep everyone informed and to coordinate the range of different HCPs and services involved in a patient's home care. How does an inter- or transdisciplinary healthcare network have to be organised as a group of autonomous individuals with "complex reciprocal" interactions and a polycentric management system so that HCPs, patients and caregivers are not only informed but also committed to a common care goal? Theoretical approach According to Nash's theory of non-cooperative games ( 4 – 8 ) each partner i has a pre-defined monetary profit p i (ordinal payoff function), a utility function U i and contributes to the best quality of care for a patient within the scope of its monetary profit (“total contributions by team members amount to X ≡ Σxi; X ~ i ≡ X - xi“; ( 8 )). An outcome value Q of collaborating teams within a network is therefore greater than a treatment and care outcome of a single person/entity.( 8 ) In the German healthcare system, each network partner acts independently and within the scope of their professional obligations. Trust in the knowledge and professional experience of the other party is crucial when referring to other healthcare professionals (HCPs). The interrelations between partners are non-cooperative due to the institutional framework, which makes it impossible to form binding agreements. This can be due to communication barriers, legal restrictions, or a lack of authority to enforce compliance ( 5 ). This self-reinforcement (non-cooperative interrelations) is characterised by independent actions and a range of strategies per partner Si. So, according to Nash, all partners involved will choose a ‘safe’ strategy and ‘safe’ action to provide the best support from their point of view. This pre-assumption about others’ working habits also implies many different solutions for the goal ‘best home care for a patient with ALS’. A Nash equilibrium is reached when a set of chosen ‘safe’ strategies or actions per partner is coherent with an invariable payoff. In a Nash equilibrium, there is no benefit for a single network partner to change its strategy or action while all other network partners maintain their strategies. ( 4 ) The interrelatedness and complexity of real-world behaviour were reasons for further development of theories based on ideal behaviour. Levinthal's theory is based on the approach that in highly complex or functionally differentiated societies, organisational routines, stimulus-response actions and networked behaviour of different actors with differing capabilities are important. ( 9 ) His approach emphasises that at least some elements of a system are interrelated, that sometimes there is a sequence of actions or hierarchies, and that some form of prior communication might have taken place between some network partners. These interdependencies have a “vast combinatorial nature of intelligent, interdependent collective action, the behaviour of individual actors cannot be characterized as being optimal” ( 9 ). In reality, the complexity of interactions between partners originates from a certain amount of incoherence, a multitude of solutions and a certain amount of ‘sub-assemblies’ ( 10 ). Furthermore, Levinthal underlines that “the particular constellation that emerges is influenced by the presence of existing sets of practices, but it is not preordained”. ( 9 ) Verbeeck et al. suggest that individual rationality aligns with group rationality and leads to an optimal solution when a common goal is established and a primary care coordinator is chosen to minimize personal strain while maintaining high personal commitment. ( 11 ) Therefore, a single care coordinator is important to achieve a common care goal and to create some social pressure on the individual units within a network. ( 11 ) This is particularly true when actions of multi-agent networks are tied to limited resources such as time, daily routines and economical behaviour. ( 9 ) Falk and Kosfeld demonstrate that effective care outcomes in collective actions depend highly on good communication and interrelations among network partners. They also highlight the significance of unequal payoffs in the network formation process. The findings of Falk and Kosfeld underscore the importance of specific information flow for better network learning and solutions.( 7 ) With the above approaches, the assumption is “the smaller the basin of attraction of a Nash equilibrium the harder it is for the agents to reach it, and the more important it is for the agents to behave as a team” ( 11 ). Accordingly, poor communication with high costs and low benefits for individual units can seriously affect the outcome of interrelated group goals. In practice, there are several ways to form and connect partners within a healthcare network. In the German ‚general practitioner model’, a general practitioner (GP) refers patients to other HCPs for treatment of other physical and psychological problems (multi-agent network). The physicians rely on their own working habits, which work particularly well for non-complex disease processes (organisational routines) and depend on the working habits of all partners involved (safe strategies). By entrusting others with tasks defined by the scope of their profession and responsibilities (non-cooperative), all partners i assume that the other referred HCP is familiar with the treatment of ALS patients (safe strategy) and that all professionals in the care network are pursuing a common care goal (common care goal and outcome value Q). Patients usually consult their GP before seeing a specialist. In some cases, a GP's referral is required to make an appointment with a specialist/therapist and to receive reimbursement from their health insurance company. It is important to follow this order of actions and communicate with network partners in a systematic way (order of actions and pre-defined payoff). In the German healthcare system, patients are not referred to a specific specialist due to the competition clause. Instead, they must select, contact, and make an appointment with a specialist or therapist themselves (non-cooperative). Usually, the referring GP does not contact the other specialist, nor do they discuss a joint approach of a treatment plan (non-linear interrelated behaviours) due to pre-investments in trust (safe strategy of counterpart). Following Levinthal, we assume that an ALS network is a network with different care providers who complement each other and in which some HCPs act in parallel on complex problems and have “elements with an important degree of coherence” (Fig. 2). To improve the quality of life of an incurable patient, palliative treatment and care goals between HCPs in an ALS network will still be fuzzy and rarely pre-defined and moreover may follow approaches of curative practices. Accordingly, there is no jointly agreed common home care plan or treatment pathway for an ALS patient (lack of care goals). Results Assessment of ALS patients in an outpatient clinic Socio-demographics, impairments, and advance care planning A study nurse specialised in PC in the ALS assessed 50 ALS patients at a outpatient clinic of a University Hospital in NRW and during home visits by a specialist palliative home care service. The average age of respondents was 62 ± 13 years, 56% were female; 17% lived alone, 78% with another person and 5% in a nursing home or long-term respiratory care facility. Stratified by age, 41% of respondents over the age of 65 lived alone, while 93% of the younger patients lived with others. In this study, patients were surveyed about their previous medical treatment facilities using a multiple response set. Of the respondents, 29 had visited outpatient clinics for treatment, 29 had visited a specialised ALS outpatient clinic, and 30 had stayed in a hospital. Only one patient reported seeing a PC consultation team during their hospitalisation, and none had received treatment in a palliative care unit. A specialist palliative home care team provided care for 9 patients, as reported by 42 valid responses. The Eastern Cooperation Oncology Group's ECOG performance scale evaluates the impact of the disease on patients' daily life abilities using a six-grade system, ranging from 0 (fully active, able to perform all activities without restrictions) to 5 (dead). Table 1 indicates that 21% of patients experienced no or minor physical limitations (grades 0–1). In the study, it was found that 24% of patients were able to care for themselves and walk around, but unable to work for more than 50% of their waking hours. Additionally, 36% of patients had limited self-care and were confined to a bed or chair for 50% or more of their waking hours. Grade 4 disability, which indicates complete immobility, was found in 19% of the participating ALS patients. Table 1 Percentage of patients, stratified by age groups Living conditions (n = 46) ≤ 65 years > 65 years All (35 to 85) alone 4% 41% 17% with others 93% 53% 78% else (nursing home, long-term ventilation community care) 3% 6% 5% Performance status (n = 42) ≤ 65 years > 65 All (35 to 85) ECOG 0–1 15% 34% 21% ECOG 2 19% 33% 24% ECOG 3 44% 20% 36% ECOG 4 22% 13% 19% Legend: ECOG Score: 0 – Asymptomatic (Fully active, able to carry on all pre-disease activities without restriction); 1 – Symptomatic but completely ambulatory (Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature. For example, light housework, office work); 2 – Symptomatic, 50% in bed, but not bedbound (Capable of only limited self-care, confined to bed or chair 50% or more of waking hours); 4 – Bedbound (Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair) ( 19 ) Source: own data; patient assessment, n = 50 In this study, it was found that 14 out of 39 patients (36%) had a normal speech process, with speech remaining unchanged from before the onset of ALS symptoms. Eight patients (21%) experienced a complete loss of useful speech, while 2 patients (5%) required a speech synthesiser or other supplements to communicate. However, two-thirds of patients experienced a mild or advanced bulbar progression, which made oral communication challenging regardless of the content. In 10% of patients, conversation with more than 25% repetition of information was possible, and 28% of patients had detectable speech disturbance. (Table 2 ) Most patients showed impairments that affected their handwriting. In 14 patients (36%) with ALS, it was no longer possible to grasp a pen (detailed shares of handwriting performance in Table 2 ). Communication and signing of advance care planning documents may be challenging for individuals with physical impairments. Out of 26 patients who provided valid responses, 3 had an advance directive, 10 had a power of attorney, 7 had both, and 2 had a legal guardian with proof of authority. Thirteen patients did not report having any of these documents. Table 2 ALS-FRS assessment at the first visit in ALS outpatient clinic Patients with speech impairments (valid n = 39, ALSFRS) Valid n Valid % 0 Loss of useful speech 8 21 1 Speech combined with non-vocal communication 2 5 2 Intelligible with repeating 4 10 3 Detectable speech disturbance 11 28 4 Normal speech process 14 36 Patients with handwriting impairments (valid n = 39, ALSFRS) Valid n Valid % 0 Unable to grip pen 14 36 1 No words are legible, but can still grip pen 2 5 2 Not all words are legible 9 23 3 Slow or sloppy: all words are legible 11 28 4 Normal 3 8 Patients with written consents (valid n = 39, ALSFRS) Valid n Valid % advance directive 3 8 power of attorney 14 36 legal guardian with proof of authority 2 5 advance directive and power of attorney 7 18 None 13 33 Source of indicators: ( 17 ) or ENCALS - European network centres of ALS https://www.encals.eu/wp-content/uploads/2017/12/ALSFRS-R-English-version.pdf Source: own data; patient assessment, n = 50 Qualitative expert interviews ALS patients’ non-cooperative dynamic multi-agent care network As effectiveness of a network also depends on the size and heterogeneity of the network, all experts were asked: "All in all, which and how many HCPs and services in total are involved in the care network of an ALS patient?" Fig. 3 illustrates how many players may need to be involved in order to provide best care for an ALS patient at home from the time of diagnosis (stage 1) to the time of highly advanced disease (stage 3). This includes HCPs from the inpatient and home care sectors, suppliers, volunteers and (lay) community from the community. In addition, social and legal counselling as well as spiritual care are essential at certain points. Figure 1 shows a fast-growing care network with many HCPs within a relatively short planning horizon. However, some of these services may be difficult for patients to access as they would not usually visit patients at home. As can be seen, the need for healthcare providers in the home care network may double or triple as the disease progresses. This means that more than 15 organisations with more than 50 people may (have to) be involved in the care of a single patient with ALS. Lack of continuity of care in the home care setting Continuity of care is an important pillar for people with severe illnesses and complex care needs who are dependent on the availability of therapists and specialists at home. In the area of home care, close monitoring of ALS patients with severe physical impairments (limitations in communication skills and mobility) is considered necessary, which is also one of the greatest challenges. All HCPs pointed out that ALS is a rare disease that poses at the same time many exceptional challenges for the provision of appropriate care compared to patients with more common diseases. Therefore, all HCPs interviewed showed a high willingness to provide more support to ALS patients and to take more time for appointments with them than for other patients. However, only specialist palliative home care teams offer proactive follow-up calls. As HCPs lack resources and expertise in dealing with ALS, there is no guarantee that patients will receive timely access and support, especially when problems with mobility, communication or respiratory symptoms occur. Most HCPs were aware of the fact that this leads to insufficient management of crises that should be easily managed at home. All in all, a lack of home visits causes further problems with symptom management and subsequent hospitalisation. Consequently, almost all HCPs experienced home care support for ALS patients as insufficient. "GPs don't understand the problem at all. Leave them alone [they say]. The therapists go away when [the patient] refuses treatment. (...) They [the therapists] just say to us, I'm not going back there again. You have to find someone else for this patient. But we, we are here 24/7. What are we supposed to do? There is no one else, nowhere. (...) There's nowhere to turn for support, so we have to rely on discussions within our team to find a solution." [Intensive home nursing team_2; home care setting] The German healthcare system only provides specialist palliative care at home for patients who require PC. Hence, all care providers and GPs interviewed reported that other specialists are not available when patients cannot visit the specialist's practice. Nearly all specialists interviewed confirmed that they try to minimise their responsibilities in terms of availability and home visits. The reasons for this were a lack of time and unattractive remuneration. In relation to continuity of care, all referred to another person and viewed the management of upcoming crises as "another person's problem" in the home care network. Answers to the question "What do you do when patients no longer turn up for appointments?" exemplified the unavailability of specialists, a refusal of responsibilities and therefore a lack of continuity of care for ALS patients who want or have to stay at home. "(...) and I said: You know what? The first who provides home visits is your GP. If you have any questions about breathing, you can call me. We'll try to sort it out on the phone first, and if I have to, I would visit you." [Pulmonologist_8, in private practice] "That's right, I don't make house calls because I don't have the time. It's not possible to just turn up here, only in case of emergencies. That's due to our limited resources. At the moment, we have a six-month wait for an appointment. (...) I am very happy that we are situated close to a university hospital with a specialised outpatient clinic, and surely there is a better treatment." [Neurologist_11; in private practice] The specialists would like to outsource the home visits to a GP or to specialists of a neurological outpatient clinic at the hospital site. The latter seemed odd, as the neurological ambulatory centres at a hospital site do not have the structural conditions, resources, status or statute to provide home visits at all (funds, special contracts with health funds, manpower etc. or legal foundation) However, the GPs and home care teams surveyed are confronted with unwanted additional responsibilities and tasks. Not knowing how to provide good quality home care for patients with breathlessness even in the early stages, one GP told us that they try to persuade patients to move to a specialised care home. "Otherwise, I would worry [...] about patients in general care homes or at home, especially when it comes to ventilation issues. [...] I don't feel comfortable if there is no one 24/7 with sufficient expertise." [General practitioner_10; in private practice] Nearly all HCPs who frequently deal with ALS patients did not feel competent enough or believe they had the specialised skills required to care for patients with such complex and extensive care needs at home. Especially if the if the disease progresses and the patient is bedridden. Most physicians (GPs and specialists) felt relieved when patients utilised a 24/7 intensive home nursing team (which in the German system is reimbursed by statutory health insurance companies for all patients on invasive mechanical ventilation). However, the intensive home nursing teams were faced with a lack of coordination within a fragmented care network. The team tried to take on a coordinating role, although this was not their responsibility. At the same time, these teams already felt overwhelmed with their actual task due to the complex needs of ALS patients. The experts predominantly confirmed that it is difficult to find specialists for home visits and that they usually rely on their own personal network. The high fragility of such informal care networks became particularly clear when individual colleagues retired and the HCPs were unable to find a replacement in the region. Lack of common treatment and care goals Most HCPs mentioned that differing treatment approaches and care goals led to serious friction and mistrust in the care network. A PC nurse stated that she struggled with implementing a PC approach among the (intensive) home nursing services, e.g. to avoid medical check-ups that have no impact on the medical care plans in a palliative situation. "So, I tried to suggest a change of attitude in this care service [...] A gentle touch, an attitude of caring, a massage can be very comforting [...]. So that they (...) don't take blood pressure twice a day, take a temperature three times a day, etc., because that's how it's always been done. " [specialist palliative home care team_1; home care setting] A critical point in the disease trajectory are decisions about mechanical ventilation. One of the pulmonologists in the home care setting reported how intensive home nursing teams began to distrust him because he initiated a discussion with a patient about treatment preferences regarding maintaining or terminating invasive mechanical ventilation. "When a patient thinks about how much longer they want to endure this and would rather prefer to die, they [the nurses] say: "Well, it's just a depressive phase" and try to get this confirmed by a person who can't speak [...]. I then get the impression that they don't want the pulmonary specialist to come back soon, because they don't approve of a different approach. [...] But we must talk about ending mechanical ventilation." [Pulmonologist_8; in private practice] An intensive home care nurse confirmed this statement and underlined her ethical concerns about withdrawing mechanical ventilation. However, she also admitted not being qualified enough to give advice on this topic. The data illustrate that even when individual HCPs set care goals with patients, this may not be (easily) communicated with other HCPs in the care network, so a multidisciplinary team approach was often lacking. The following sections show that tensions can arise due to a lack of shared treatment goals or agreement between the HCPs involved. Lack of care coordination As part of the study, we asked the question: "Who coordinates the care?" The pooled results showed a strong fragmentation and lack of clarity among professionals regarding responsibilities and actions. Most experts considered care coordination to be important and felt that it was their own responsibility to organise care or coordinate the persons involved. During the interviews, the experts acknowledged that coordination is not merely the "trivial" task of communicating treatment and care goals to others. The analysis clarified that coordinating the care network is too time-consuming for most HCPs in their daily routine. The interviews unfold that the terms coordination, optimisation and information are understood differently, as the following quote from a neurologist illustrates: "That's the physician’s job (...) yes, we support the patient, (...) we give recommendations (...) but we very rarely make phone calls. That would be too time-consuming. (...) we hand out a list of addresses." [Neurologist_4; in private practice] Some experts told patients which additional services they should involve and gave them a list of addresses. Only one GP said he assesses needs, defines treatment goals and contacts appropriate services or therapists. Another doctor merely hoped that someone else would feel responsible. Overall, the impression of the specialists was: "Well, I do coordinate some things, but I'm actually very dependent on others, such as well-informed family members or others who step in." [Neurologist_5\ in private practice] "Nobody, hopefully the caregiver." [Neurologist_2, inpatient sector] All in all, none of the interviewees named a single responsible coordinator, while at the same time the areas of responsibility remained unclear. Neither neurologists nor pulmonologists visited patients regularly or participated in coordination tasks, such as organising access to other services or specialities or coordinating information and treatment goals between all HCPs involved in the care network. The main arguments cited were a lack of information about which services patients are entitled to use according to the Social Code Book, that they do not have access to services in the region and that they do not have time to optimise or coordinate a patient's care (network). Quantitative survey among healthcare facilities in North Rhine-Westphalia Lack of care coordination Of the 393 addresses listed, half of the facilities were surveyed: PC services 179 of 196 and 17 respondents from neurological centres. (Table 3 ) A small percentage (7%) stated that they were not the right contact person for this service, 2% refused to participate and 39% were unsuccessful in making contact by telephone. Of the 59% of the centres contacted, 84% (n = 140) completed the survey, some of them expressing great interest in this study. Table 3 Response rate calculation inpatient hospices volunteer hospice services specialist palliative home care teams PC unit neurological centres Total response rate (%) 39% 65% 47% 66% 23% 50% non-response (%) 61% 35% 53% 34% 77% 50% total (n) 62 147 57 52 74 393 response rate (n) 24 94 27 34 17 196 Source: own data 2017/18; calculated according to the American Association for Public Opinion Research (AAPOR) According to the survey conducted in the NRW region, the PC providers estimated that around 2% (median) of their patients were diagnosed with ALS in 2016. Almost half of the PC services (47%) provided care for ALS patients for more than five weeks. Most PC services (80%) reported coordinating treatment and care for all ALS patients in their service. Additionally, 74% of the services optimized care for all ALS patients, and 84% provided guidance to all caregivers of ALS patients. Of the 17 neurological centres surveyed, seven treated their ALS patients for more than five weeks, 11 provided coordinated care, and six optimized care for all patients. Nine centres provided guidance to caregivers for all ALS patients (53%). (Table 4 ) Table 4 Percentages of valid health care institutions in NRW Palliative care services (n = 179) Neurological centres (n = 17) Coordination of treatment and care for none 10 (9%) 0 (0%) for some 12 (11%) 6 (35%) for all 88 (80%) 11 (65%) total 110 (100%) 17 (100%) Optimisation of the care situation for none 8 (7%) 0 (0%) for some 20 (18%) 11 (65%) for all 81 (74%) 6 (35%) total 126 (100%) 17 (100%) Support and guidance of caregivers for none 3 (3%) 0 (0%) for some 15 (13%) 8 (47%) for all 95 (84%) 9 (53%) total 113 (100%) 17 (100%) Source: own data 2017/18 and calculations. Summary of applied game theory We used a synthesis of game theory to analyse the statements of the HCPs interviewed in order to better understand the actions they take place and the problems they cause. ( 20 ) Our data, applied to Nash's theory of non-cooperative games, show that multiple HCPs (n-persons) are involved in the home care for ALS patients. Figure 4 shows that the following factors have an impact on the outcome value Q of the collaborating teams: a) Formation of sub-assemblies and unequal flow of information b) Lack of common treatment and care goals c) (Partial) Lack of continuity of care in the home care setting d) Lack of care coordination; absence of home visits The findings show that independent actions and sets of strategies of HCPs are linked to organisational routines, stimulus-response actions and functional differentiation within the German healthcare system. The assumption of a lack of Nash equilibrium was also confirmed. Discussion ALS is a rare disease that requires complex treatment and comprehensive (home) care. As curative therapy is not available, patients require counselling and symptomatic palliative treatment, as recommended in the S1 guidelines of the German network of neurologists. ( 1 ) Patients, caregivers and HCPs are faced with a variety of complex needs and difficult ethical questions that cannot be easily answered by a single HCP. Furthermore, due to the advanced stage of diagnosis, there is a need for a rapidly growing, dynamic interdisciplinary care network. The coordination of this network can be overwhelming for those involved. Best patient-centred (palliative) home care for ALS patients in the region includes comprehensive information about local services and physicians who provide home visits. Insufficient knowledge of treatment and care pathways and lack of experience with ALS patients leads to problems and mistrust between HCPs in maintaining appropriate treatment and home care. Our data confirm that there is a lack of a common outcome value Q, mainly due to the constraints of daily practice, organisational routines, communication failures, lack of transparency and limited resources (lack of a shared care goal and binding agreements). The absence of common care goals can lead to mistrust, particularly in situations such as mechanical ventilation, psychological treatment, or ethical dilemmas, where a lack of knowledge and misinformation exists within the care network. This results in additional organisational and communicative efforts for each person, leading to time-consuming exchange within the care network. When making decisions with serious consequences, such as withdrawing or refusing ventilatory support, our data shows that the individual behaviour and actions of HCPs involved are not related to group behaviour and form sub-assemblies. ALS patients, caregivers and HCPs would clearly benefit from early integration of specialist palliative care, as emergency plans drafted in accordance with patients, a comprehensive care plan including coordination and advance care planning are often missing. The central role of coordinating the care network was claimed by various HCPs. GPs play a central role in the German healthcare system in channelling patient treatment and care pathways. In contrast, some HCPs stated that the main coordinator should be a neurologist, as ALS is a neurological disease. ( 21 ) However, neurologists in Germany do not provide home visits, and both the neurologist and the GP are usually not available outside consultation hours. Therefore, no support can be guaranteed for crises that occur in the home environment. The data unveils that an unattractive remuneration system (uneven payoffs) within an ALS home care network has a negative impact on availability and may lead to a passing-on of responsibilities. As part of our study, we observed uneven financial systems that lead to insufficient home care for ALS patients ( 4 ) as the actions of the multi-agent network are bound by limited resources such as time, daily routines and economical behaviour. Although in Germany most specialists and therapists do not visit patients at home due to unattractive renumeration and lack of resources, our study discovered that some HCPs were available as part of informal networks or as a favour to a friend, albeit in most cases only for situations with dire needs. However, this left most patients with advanced ALS without continuity of care in the home care sector. Support in the home setting relies on knowledge and personal commitment of single HCPs, but physicians have little time for phone calls during and outside of their office hours. Most of the interviewed HCPs showed reluctance to invest more time to optimise treatment and care pathways (non-cooperative). To maintain the best quality of life for patients with a life-threatening disease, the healthcare system (statutory and private health insurance schemes) should implement adequate incentives for home visits of specialists. This gap of home visits by HCPs could be closed by the timely involvement of a multi-professional specialist palliative home care team. These teams are available 24/7, have profound knowledge of cooperating healthcare providers and services in the region and ensure an equal flow of information between all persons involved. Nevertheless, as our regional sample shows, these teams would need to ensure that they collaborate with neurologists and outpatient clinics for ALS patients and improve their own expertise in the care of ALS patients. Emphasis was placed on multi-professional and interdisciplinary collaboration, which requires organisational, coordination and communication skills. Quantitative data from healthcare facilities in NRW show that palliative care and neurology believe that coordinating and responding to the complex needs of patients and caregivers is part of their service. However, most experts confirmed that patients and caregivers are left alone in managing access to highly diverse specialists and the communication flow in the care network. Using game theory, we observed 'mass actions' without full information about a common patient-centred care goal. In summary, our study makes clear that coordination of all HCPs involved is a prerequisite for an effective, well-functioning care network that is able to respond to the complex needs of patients and provide sufficient support. Integration of specialist palliative home care teams may not be necessary in care networks if there is a clearly communicated responsible person due to the compassionate behaviour and personal investment of a single person (GP, neurologist or nursing service) with sufficient expertise in case management; a clearly communicated responsible person. However, our data has shown that the latter is not the case. Thus, to keep the personal burden low for all HCPs involved and while keeping the personal engagement high it is beneficial to involve a specialist palliative home care team to find consensus on treatment goals, develop a care plan including emergency planning, and support the patient and caregivers with advance care planning. The application of Nash's theory of non-cooperative games helps to understand the complexity of factors that affect the outcome of multi-dynamic actions within a network. When, as shown by our data, certain regulations in the German healthcare system and actions of HCPs will lead to high costs and low benefits for single entities (Nash`s equilibrium), this is not only true on the financial level, but also on the qualitative level of care, care continuity, patient safety, and effectiveness and job satisfaction of HCPs. Conclusions As part of the study, palliative care was integrated early on with a single point of contact to provide individualized, process-controlled case management in line with the patient's needs. Additionally, the main contact helped navigate the fragmented German healthcare system and identify rights to medical treatment, services, and assistance. This service is considered necessary and extremely helpful by patients, caregivers, and HCPs. It is also a trust-building procedure at an early stage, reducing uncertainties and preventing premature or excessive use of treatment pathways. However, it has not yet been structured and is currently reliant on donations. It is recommended to appoint a care coordinator from the time of diagnosis to ensure access to and good quality home care for each patient. The coordinator should be responsible for navigating, organising and networking all the people in the care network to provide personalised process control. The care coordinator performs routine standardized assessments and adjusts treatment objectives to the patient's changing priorities and goals, particularly as the illness advances and during and after crises. Additionally, the coordinator should be accessible outside of regular office hours to prevent or decrease hospital admissions. Methods Qualitative interviews Study population and interview phase with healthcare professionals To obtain a comprehensive description of the situation and needs of ALS patients living at home, a mixed-methods design was used. Physicians from the fields of palliative medicine, neurology, pulmonology and general practitioner care, as well as three senior nursing staff and one person from the field of social work were requested for interviews. So, 15 purposefully selected HCPs with many years of practical knowledge about ALS patients from inpatient and home care sector were interviewed. The guided interviews were conducted between May and August 2017 in the city of Bonn and the Rhein-Sieg county. ( 12 ) The aim was to achieve professional validity by interviewing at least two experts from each professional group. This selection of care providers made it possible to analyse cross-sectoral cooperation, gaps in care and conditions for effective treatment pathways. All participating HCPs were informed about the study, had time for questions and signed an informed consent. They also signed a consent for publication with anonymous data. Design, Survey contents and analysis Based on an interview guideline with open questions relating to ALS the following keywords "security, autonomy, future prospects, relief from responsibility, decision-making skills and the ability to plan" were addressed. In-depth questions on the main topics were asked when necessary and helped to reveal the basic attitude as well as regularity of the participants' own working methods. This approach also allows a sequential interpretation of the data material, as "at each sequence point of a course of action (...) on the one hand, a selection could be made from the connection possibilities that were regularly opened up by the preceding sequence points, and on the other hand, a scope for future connection possibilities could be opened up" ( 13 ). This meant that the central topics of "care planning and care process", "early palliative care connection", "own needs", "offers" and "experiences with a palliative care programme" could be addressed, "services" and "experiences with an ethics committee" could be analysed for the respective profession with its care provision (e.g. specialists, specialised outpatient palliative care service). All interviews were recorded, transcribed verbatim and analysed thematically using MAXQDA. ( 14 ) One of the authors (GA) used open coding to identify themes relevant to the research question. The themes for the purpose of this paper were the size of the home care network, availability of HCPs and services in home care, lack of access to certain services or specialists, continuity of care (by a common care goal), organisation, optimisation and coordination of the care network, and communication. Two authors (GA and LR) checked consistency and intercoder reliability by discussing ambivalent codings and text fragments. ( 15 ) Subsequently, GA deductively applied the main codes and subcodes to all interview transcripts. Overall, we used a selective coding procedure to identify and integrate relationships between categories. ( 14 , 15 ) We selected illustrative quotes to give an insight into the observed typical behaviour in practice. Quantitative interviews Study population and interview phase with healthcare facilities in North Rhine-Westphalia A full census survey of PC services in North Rhine-Westphalia (NRW); inpatient hospices, PC units, specialist palliative home care teams and neurological centres was conducted by GA and AG in 2017. A required representative sample size (± 5%, n = 162 of 277) was calculated for volunteer hospice services using an online power analysis calculator. Design, Survey contents and analysis The predominantly closed questionnaire used the entry question "Did you have ALS patients in 2016?" as inclusion criteria in all surveys. If no, the inquiry stopped. The items of the standardised questionnaire (developed by GA, AG, BJ and pre-tested on n = 6) resulted from qualitative interviews and the German S1 guidelines of neurology for the care of ALS patients. ( 1 ) Most of the closed questionnaires were designed to be completed within ten minutes. The Statistical Programme for Social Sciences (SPSS) was used for the descriptive analyses of the quantitative data. Only valid answers were discussed. Study population and disease assessment with ALS patients Between May 2016 and September 2018 through a convenience sampling procedure two nurses specialised in PC recruited patients in the ALS outpatient clinic at a University Hospital in NRW. The study was approved by the Ministry of Health of North Rhine-Westphalia. The study was performed in accordance with all relevant guidelines and regulations. Hence, the study's procedures involving human participants adhered to the ethical standards of the University Hospital Bonn and followed the 1964 Helsinki Declaration and its later amendments. All study participants were informed about the study, had time for questions and signed an informed consent. They also signed a consent for publication with anonymous data. Design, Survey contents and analysis All patients were systematically assessed using the validated and standardised German minimal documentation system (MIDOS) for patients in palliative care and the validated ALS Functional Rating Scale ALSFRS. MIDOS records ten symptoms (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath on four-point Likert scales). ( 16 ) ALSFRS documents the deterioration progress of physical functions on five-point Likert scales and thus the patient's independence in coping with activities of daily living. ( 17 ) The German hospice and palliative care assessment tool HOPE, which is documented by a doctor, includes information on symptoms, medication, current and previous care setting and the burden of caregivers. ( 18 ). The 141 mainly close ended questionnaire contains information on patient's socio-demographic data, patient's need for spiritual care, consultations, and ethical decisions needs. The Statistical Programme for Social Sciences (SPSS) was used for the descriptive analyses of the quantitative data. Only valid answers were discussed. Abbreviations ALS amyotrophic lateral sclerosis HCPs healthcare professionals GP general practitioner PC palliative care MAXQDA software for analysing qualitative data SPSS software for analysing quantitative data Declarations Availability of data and materials The data sets generated and/or analysed as part of the current study are not publicly accessible due to sensitivity and wording restrictions in the consent form and may therefore only be used and analysed by the researchers involved in the current study. However, completed analyses are available upon reasoned request to the author Lukas Radbruch ( [email protected] ). Competing interests The authors declare that they have no competing interests. Funding The project was funded by ALPHA North Rhine-Westphalia between Dec. 2016 and Oct. 2018. Limitations The study acknowledges that the data patterns are mainly qualitative and specific to one region in Germany. In addition, most of the respondents were from a region with predominantly strong regional health care provision. Nevertheless, it is argued that the findings can provide valuable insights into the underlying gaps, organisational challenges and legal boundaries of competition within the German healthcare system. It has become clear that even in structurally strong areas, home care networks are largely based on personal contacts rather than exclusively on institutionally constituted actions. These findings therefore highlight the need for further improvements in the healthcare system, in particular to secure a patient's home care network. Authors' contributions GA and LR supervised the project. GA, BJ and LR developed and designed the study. BJ, PW and LR helped with the recruitment of interview partners. GA and LR analysed the qualitative and quantitative data. GA and BJ drafted and revised the manuscript with critical comments, review and editing from LR and MM. All authors reviewed and approved the final manuscript. Acknowledgement We would like to thank Andrea Gasper, Stephan Lange, Jasmin Ewert and all participants in North Rhine-Westphalia for their time and support of our survey. References Ludolph AC. Amyotrophe Lateralsklerose (Motoneuronerkrankungen). Leitlinien für Diagnostik und Therapie in der Neurologie Stuttgart, New York: Thieme. 2012:254-63. Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2016;17(3-4):198-205. Rooney J, Byrne S, Heverin M, Tobin K, Dick A, Donaghy C, Hardiman O. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86(5):496-501. Nash J. Non-Cooperative Games. Annals of Mathematics. 1951;54(2):286-95. Bonanno G. Non-cooperative Game Theory. 2008. Falk A, Kosfeld M. The Hidden Costs of Control. American Economic Review. 2006;96(5):1611-30. Falk A, Kosfeld M. It's All About Connections: Evidence on Network Formation. Institute for the Study of Labor (IZA), IZA Discussion Papers. 2003;11. Axtell R. Non-cooperative dynamics of multi-agent teams2002. 1082-9 p. Levinthal DA. Organizational Capabilities in Complex Worlds. In: Dosi G, Richard R. Nelson, and Sidney Winter, editor. The Nature and Dynamics of Organizational Capabilities. Oxford: Oxford University Press; 2003. Levinthal D. From Strategy to Strategic Organization. 2018. p. 71-7. Verbeeck K, Nowé A, Lenaerts T, Parent J, editors. Learning to Reach the Pareto Optimal Nash Equilibrium as a Team. AI 2002: Advances in Artificial Intelligence; 2002 2002//; Berlin, Heidelberg: Springer Berlin Heidelberg. Bogner A, Littig B, Menz W. Interviews mit Experten. Eine praxisorientierte Einführung. Wiesbaden: VS Verlag für Sozialwissenschaften; 2014. Oevermann U. Die Methode der Fallrekonstruktion in der Grundlagenforschung sowie der klinischen und pädagogischen Praxis. Die Fallrekonstruktion : Sinnverstehen in der sozialwissenschaftlichen Forschung. Suhrkamp-Taschenbuch Wissenschaft. 1459. Frankfurt, Main: Suhrkamp; 2000. p. 58-156. Kuckartz U, Grunenberg H, Lauterbach A. Qualitative Datenanalyse: computergestützt. Methodische Hintergründe und Beispiele aus der Forschungspraxis. Wiesbaden: VS Verlag für Sozialwissenschaften; 2004. Kelle U. Die Integration qualitativer und quantitativer Methoden in der empirischen Sozialforschung. Theoretische Grundlagen und methodologische Konzepte. Wiesbaden: VS Verlag für Sozialwissenschaften; 2008. Radbruch L, Sabatowski R, Loick G, Jonen-Thielemann I, Elsner F, Hörmann E. MIDOS. Der Schmerz. 2000;14(4):231-9. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences. 1999;169(1):13-21. Radbruch L, Palliativ-Verband DH-u. HOPE - Handbuch zu Dokumentation und Qualitätsmanagement in der Hospiz- und Palliativversorgung: Hospizverl.; 2009. Oken MM, Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P. Toxicity And Response Criteria Of The Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982;5:649-55. Weber M, Winckelmann J. Wirtschaft und Gesellschaft: Grundriß der Verstehenden Soziologie: Mohr; 2002. Borasio G, Voltz R. Palliative Therapie bei amyotropher Lateralsklerose (ALS). Aktuelle Neurologie. 1998;25(03):115-22. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4018682","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":288804465,"identity":"908fe006-5793-4f5f-a9be-440a42ae57b9","order_by":0,"name":"Gülay Ates","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA0ElEQVRIiWNgGAWjYNCCCgYDIMkGYjI2EFbODMRnSNbC2EaKFnn38wcf/px32Ji//fCzBx93MMj2E9JieCaZ2Zh322EziTNp5oYzzzAYzyRkjWFDMps047bDNgwHctikedsYEjccIKSl/zH7z59zDtvIn3/DJv0XqGU/IS3yEslsDLwNh80MbgBtYQTZQsgvBhKPjaV5jqUbG954ZibZ2yZhPIOgLf2JDz/+qLE2nHc++ZnEzzYb2f4GQragmSlByFlAWwiZOQpGwSgYBaOAAQB9RUD+NdmkHwAAAABJRU5ErkJggg==","orcid":"","institution":"University Hospital RWTH Aachen","correspondingAuthor":true,"prefix":"","firstName":"Gülay","middleName":"","lastName":"Ates","suffix":""},{"id":288804467,"identity":"97cbc376-8bff-44d9-9ab3-5dd246b8ec70","order_by":1,"name":"Birgit Jaspers","email":"","orcid":"","institution":"University Hospital Bonn","correspondingAuthor":false,"prefix":"","firstName":"Birgit","middleName":"","lastName":"Jaspers","suffix":""},{"id":288804468,"identity":"360b8956-c078-465a-9c73-12a7580e90c5","order_by":2,"name":"Patrick Weydt","email":"","orcid":"","institution":"University Hospital Bonn","correspondingAuthor":false,"prefix":"","firstName":"Patrick","middleName":"","lastName":"Weydt","suffix":""},{"id":288804469,"identity":"95e0b637-c7b7-4050-94f0-2cf8bde83593","order_by":3,"name":"Martin Mücke","email":"","orcid":"","institution":"University Hospital RWTH Aachen","correspondingAuthor":false,"prefix":"","firstName":"Martin","middleName":"","lastName":"Mücke","suffix":""},{"id":288804470,"identity":"05436eb5-fdd7-4f1a-b57a-30a9d4a186ec","order_by":4,"name":"Lukas Radbruch","email":"","orcid":"","institution":"University Hospital Bonn","correspondingAuthor":false,"prefix":"","firstName":"Lukas","middleName":"","lastName":"Radbruch","suffix":""}],"badges":[],"createdAt":"2024-03-05 21:44:54","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4018682/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4018682/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":54372746,"identity":"6f6d2a47-d3c0-4b12-921c-99450fd9dad4","added_by":"auto","created_at":"2024-04-09 13:24:32","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":224680,"visible":true,"origin":"","legend":"\u003cp\u003eNecessary partners and participation factors in a home care network\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-4018682/v1/8232e56205bfedb0c621bc53.jpeg"},{"id":54372747,"identity":"2e783360-427b-4d9f-b545-a7737fbc5e3e","added_by":"auto","created_at":"2024-04-09 13:24:32","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":393107,"visible":true,"origin":"","legend":"\u003cp\u003eSee image above for figure legend\u003c/p\u003e","description":"","filename":"floatimage2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-4018682/v1/a512db3be0366a7491e84e8f.jpeg"},{"id":54372744,"identity":"884b7e36-9cdf-4d70-9b1a-af34ea873022","added_by":"auto","created_at":"2024-04-09 13:24:32","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":69334,"visible":true,"origin":"","legend":"\u003cp\u003eALS patients’ complex situation and their required home care network\u003c/p\u003e\n\u003cp\u003eLegend: listed are all HCPs needed; \u003cbr\u003e\n \u003cem\u003eitalics\u003c/em\u003e are all HCPs, who do \u003cem\u003ehome visits only in exceptional cases\u003c/em\u003e; \u0026nbsp;\u0026nbsp;\u003cbr\u003e\n \u003cu\u003eunderlined\u003c/u\u003e are HCPs, who \u003cu\u003edo not visit patients at home\u003c/u\u003e and can \u0026nbsp;\u0026nbsp;be seen as a structural/systematical gap in the home care system; \u003cbr\u003e\n \u0026nbsp;*only as a member of a specialist home care team\u003c/p\u003e","description":"","filename":"floatimage3.png","url":"https://assets-eu.researchsquare.com/files/rs-4018682/v1/734b57be332dba23e27c50eb.png"},{"id":54372745,"identity":"de5788cd-b4e2-4846-ae7d-6549e1a738dd","added_by":"auto","created_at":"2024-04-09 13:24:32","extension":"png","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":50369,"visible":true,"origin":"","legend":"\u003cp\u003eNon-cooperative healthcare professionals in the patient's home care network\u003c/p\u003e","description":"","filename":"floatimage4.png","url":"https://assets-eu.researchsquare.com/files/rs-4018682/v1/16b14d9253a1d26ce9998a31.png"},{"id":58632048,"identity":"861d5e58-337c-4ce3-97cf-bcb04f2e8924","added_by":"auto","created_at":"2024-06-19 05:54:10","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1465615,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4018682/v1/e4509d0d-30eb-4e0c-b09c-4ef6f7c541b8.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"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.","fulltext":[{"header":"Background","content":"\u003cp\u003eALS patients suffer from a range of physical symptoms, psycho-social issues and spiritual needs through their disease trajectory. A neurological guideline for diagnosis and treatment of ALS recommends (early) integration of palliative care. (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Non-medical interventions such as physiotherapy, occupational or speech therapy and provision of assistive devices or technology for daily living are additional services to maintain quality of life. As the disease progresses and the symptom burden increases (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e), patients are confronted with a large number of different HCPs and services. (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) At a specific point in their disease progression, complex problems and exacerbations may require intensive home care support, sometimes at very short notice. (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eEffective management is needed to keep everyone informed and to coordinate the range of different HCPs and services involved in a patient's home care. How does an inter- or transdisciplinary healthcare network have to be organised as a group of autonomous individuals with \"complex reciprocal\" interactions and a polycentric management system so that HCPs, patients and caregivers are not only informed but also committed to a common care goal?\u003c/p\u003e"},{"header":"Theoretical approach","content":"\u003cp\u003eAccording to Nash's theory of non-cooperative games (\u003cspan additionalcitationids=\"CR5 CR6 CR7\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e) each partner i has a pre-defined monetary profit p\u003csub\u003ei\u003c/sub\u003e (ordinal payoff function), a utility function U\u003csub\u003ei\u003c/sub\u003e and contributes to the best quality of care for a patient within the scope of its monetary profit (\u0026ldquo;total contributions by team members amount to X\u0026thinsp;\u0026equiv;\u0026thinsp;Σxi; X\u0026thinsp;~\u0026thinsp;i\u0026thinsp;\u0026equiv;\u0026thinsp;X - xi\u0026ldquo;; (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)). An outcome value Q of collaborating teams within a network is therefore greater than a treatment and care outcome of a single person/entity.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eIn the German healthcare system, each network partner acts independently and within the scope of their professional obligations. Trust in the knowledge and professional experience of the other party is crucial when referring to other healthcare professionals (HCPs). The interrelations between partners are non-cooperative due to the institutional framework, which makes it impossible to form binding agreements. This can be due to communication barriers, legal restrictions, or a lack of authority to enforce compliance (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). This self-reinforcement (non-cooperative interrelations) is characterised by independent actions and a range of strategies per partner Si. So, according to Nash, all partners involved will choose a \u0026lsquo;safe\u0026rsquo; strategy and \u0026lsquo;safe\u0026rsquo; action to provide the best support from their point of view. This pre-assumption about others\u0026rsquo; working habits also implies many different solutions for the goal \u0026lsquo;best home care for a patient with ALS\u0026rsquo;. A Nash equilibrium is reached when a set of chosen \u0026lsquo;safe\u0026rsquo; strategies or actions per partner is coherent with an invariable payoff. In a Nash equilibrium, there is no benefit for a single network partner to change its strategy or action while all other network partners maintain their strategies. (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThe interrelatedness and complexity of real-world behaviour were reasons for further development of theories based on ideal behaviour. Levinthal's theory is based on the approach that in highly complex or functionally differentiated societies, organisational routines, stimulus-response actions and networked behaviour of different actors with differing capabilities are important. (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) His approach emphasises that at least some elements of a system are interrelated, that sometimes there is a sequence of actions or hierarchies, and that some form of prior communication might have taken place between some network partners. These interdependencies have a \u0026ldquo;vast combinatorial nature of intelligent, interdependent collective action, the behaviour of individual actors cannot be characterized as being optimal\u0026rdquo; (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). In reality, the complexity of interactions between partners originates from a certain amount of incoherence, a multitude of solutions and a certain amount of \u0026lsquo;sub-assemblies\u0026rsquo; (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Furthermore, Levinthal underlines that \u0026ldquo;the particular constellation that emerges is influenced by the presence of existing sets of practices, but it is not preordained\u0026rdquo;. (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eVerbeeck et al. suggest that individual rationality aligns with group rationality and leads to an optimal solution when a common goal is established and a primary care coordinator is chosen to minimize personal strain while maintaining high personal commitment. (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) Therefore, a single care coordinator is important to achieve a common care goal and to create some social pressure on the individual units within a network. (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) This is particularly true when actions of multi-agent networks are tied to limited resources such as time, daily routines and economical behaviour. (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) Falk and Kosfeld demonstrate that effective care outcomes in collective actions depend highly on good communication and interrelations among network partners. They also highlight the significance of unequal payoffs in the network formation process. The findings of Falk and Kosfeld underscore the importance of specific information flow for better network learning and solutions.(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) With the above approaches, the assumption is \u0026ldquo;the smaller the basin of attraction of a Nash equilibrium the harder it is for the agents to reach it, and the more important it is for the agents to behave as a team\u0026rdquo; (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Accordingly, poor communication with high costs and low benefits for individual units can seriously affect the outcome of interrelated group goals. In practice, there are several ways to form and connect partners within a healthcare network.\u003c/p\u003e \u003cp\u003eIn the German \u0026sbquo;general practitioner model\u0026rsquo;, a general practitioner (GP) refers patients to other HCPs for treatment of other physical and psychological problems (multi-agent network). The physicians rely on their own working habits, which work particularly well for non-complex disease processes (organisational routines) and depend on the working habits of all partners involved (safe strategies). By entrusting others with tasks defined by the scope of their profession and responsibilities (non-cooperative), all partners i assume that the other referred HCP is familiar with the treatment of ALS patients (safe strategy) and that all professionals in the care network are pursuing a common care goal (common care goal and outcome value Q). Patients usually consult their GP before seeing a specialist. In some cases, a GP's referral is required to make an appointment with a specialist/therapist and to receive reimbursement from their health insurance company. It is important to follow this order of actions and communicate with network partners in a systematic way (order of actions and pre-defined payoff). In the German healthcare system, patients are not referred to a specific specialist due to the competition clause. Instead, they must select, contact, and make an appointment with a specialist or therapist themselves (non-cooperative). Usually, the referring GP does not contact the other specialist, nor do they discuss a joint approach of a treatment plan (non-linear interrelated behaviours) due to pre-investments in trust (safe strategy of counterpart). Following Levinthal, we assume that an ALS network is a network with different care providers who complement each other and in which some HCPs act in parallel on complex problems and have \u0026ldquo;elements with an important degree of coherence\u0026rdquo; (Fig.\u0026nbsp;2). To improve the quality of life of an incurable patient, palliative treatment and care goals between HCPs in an ALS network will still be fuzzy and rarely pre-defined and moreover may follow approaches of curative practices. Accordingly, there is no jointly agreed common home care plan or treatment pathway for an ALS patient (lack of care goals).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eAssessment of ALS patients in an outpatient clinic\u003c/h2\u003e \u003cdiv id=\"Sec5\" class=\"Section3\"\u003e \u003ch2\u003eSocio-demographics, impairments, and advance care planning\u003c/h2\u003e \u003cp\u003eA study nurse specialised in PC in the ALS assessed 50 ALS patients at a outpatient clinic of a University Hospital in NRW and during home visits by a specialist palliative home care service. The average age of respondents was 62\u0026thinsp;\u0026plusmn;\u0026thinsp;13 years, 56% were female; 17% lived alone, 78% with another person and 5% in a nursing home or long-term respiratory care facility. Stratified by age, 41% of respondents over the age of 65 lived alone, while 93% of the younger patients lived with others.\u003c/p\u003e \u003cp\u003eIn this study, patients were surveyed about their previous medical treatment facilities using a multiple response set. Of the respondents, 29 had visited outpatient clinics for treatment, 29 had visited a specialised ALS outpatient clinic, and 30 had stayed in a hospital. Only one patient reported seeing a PC consultation team during their hospitalisation, and none had received treatment in a palliative care unit. A specialist palliative home care team provided care for 9 patients, as reported by 42 valid responses.\u003c/p\u003e \u003cp\u003eThe Eastern Cooperation Oncology Group's ECOG performance scale evaluates the impact of the disease on patients' daily life abilities using a six-grade system, ranging from 0 (fully active, able to perform all activities without restrictions) to 5 (dead). Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e indicates that 21% of patients experienced no or minor physical limitations (grades 0\u0026ndash;1). In the study, it was found that 24% of patients were able to care for themselves and walk around, but unable to work for more than 50% of their waking hours. Additionally, 36% of patients had limited self-care and were confined to a bed or chair for 50% or more of their waking hours. Grade 4 disability, which indicates complete immobility, was found in 19% of the participating ALS patients.\u003c/p\u003e \u003ctable id=\"Tab1\" border=\"1\" style=\"margin-right: calc(0%); width: 100%;\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003ePercentage of patients, stratified by age groups\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eLiving conditions (n\u0026thinsp;=\u0026thinsp;46)\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e\u0026le;\u0026thinsp;65 years\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e\u0026gt;\u0026thinsp;65 years\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003eAll (35 to 85)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003ealone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e4%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e41%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e17%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003ewith others\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e93%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e53%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e78%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eelse (nursing home, long-term ventilation community care)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e3%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e6%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e5%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003ePerformance status (n\u0026thinsp;=\u0026thinsp;42)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e\u0026le;\u0026thinsp;65 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e\u0026gt;\u0026thinsp;65\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003eAll (35 to 85)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eECOG 0\u0026ndash;1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e15%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e34%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e21%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eECOG 2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e19%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e33%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e24%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eECOG 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e44%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e20%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e36%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" style=\"width: 44.2253%;\"\u003e\n \u003cp\u003eECOG 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.2509%;\"\u003e\n \u003cp\u003e22%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 10.3485%;\"\u003e\n \u003cp\u003e13%\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" style=\"width: 11.6177%;\"\u003e\n \u003cp\u003e19%\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\" style=\"width: 78.0045%;\"\u003e\n \u003cp\u003eLegend: ECOG Score: 0 \u0026ndash; Asymptomatic (Fully active, able to carry on all pre-disease activities without restriction); 1 \u0026ndash; Symptomatic but completely ambulatory (Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature. For example, light housework, office work); 2 \u0026ndash; Symptomatic, \u0026lt;\u0026thinsp;50% in bed during the day (Ambulatory and capable of all self-care but unable to carry out any work activities. Up and about more than 50% of waking hours); 3 \u0026ndash; Symptomatic, \u0026gt;\u0026thinsp;50% in bed, but not bedbound (Capable of only limited self-care, confined to bed or chair 50% or more of waking hours); 4 \u0026ndash; Bedbound (Completely disabled. Cannot carry on any self-care. Totally confined to bed or chair) (\u003cspan class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e\n \u003cp\u003eSource: own data; patient assessment, n\u0026thinsp;=\u0026thinsp;50\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e \u003cp\u003eIn this study, it was found that 14 out of 39 patients (36%) had a normal speech process, with speech remaining unchanged from before the onset of ALS symptoms. Eight patients (21%) experienced a complete loss of useful speech, while 2 patients (5%) required a speech synthesiser or other supplements to communicate. However, two-thirds of patients experienced a mild or advanced bulbar progression, which made oral communication challenging regardless of the content. In 10% of patients, conversation with more than 25% repetition of information was possible, and 28% of patients had detectable speech disturbance. (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eMost patients showed impairments that affected their handwriting. In 14 patients (36%) with ALS, it was no longer possible to grasp a pen (detailed shares of handwriting performance in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eCommunication and signing of advance care planning documents may be challenging for individuals with physical impairments. Out of 26 patients who provided valid responses, 3 had an advance directive, 10 had a power of attorney, 7 had both, and 2 had a legal guardian with proof of authority. Thirteen patients did not report having any of these documents.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eALS-FRS assessment at the first visit in ALS outpatient clinic\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003ePatients with speech impairments (valid n\u0026thinsp;=\u0026thinsp;39, ALSFRS)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eValid n\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eValid %\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0 Loss of useful speech\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1 Speech combined with non-vocal communication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2 Intelligible with repeating\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3 Detectable speech disturbance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4 Normal speech process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003ePatients with handwriting impairments (valid n\u0026thinsp;=\u0026thinsp;39, ALSFRS)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eValid n\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eValid %\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0 Unable to grip pen\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1 No words are legible, but can still grip pen\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2 Not all words are legible\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3 Slow or sloppy: all words are legible\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4 Normal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003ePatients with written consents (valid n\u0026thinsp;=\u0026thinsp;39, ALSFRS)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eValid n\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eValid %\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eadvance directive\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003epower of attorney\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003elegal guardian with proof of authority\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eadvance directive and power of attorney\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNone\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSource of indicators: (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) or ENCALS - European network centres of ALS \u003c/p\u003e \u003cp\u003e\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.encals.eu/wp-content/uploads/2017/12/ALSFRS-R-English-version.pdf\u003c/span\u003e\u003cspan address=\"https://www.encals.eu/wp-content/uploads/2017/12/ALSFRS-R-English-version.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e Source: own data; patient assessment, n\u0026thinsp;=\u0026thinsp;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003eQualitative expert interviews\u003c/h2\u003e \u003cdiv id=\"Sec7\" class=\"Section4\"\u003e \u003ch2\u003eALS patients\u0026rsquo; non-cooperative dynamic multi-agent care network\u003c/h2\u003e \u003cp\u003eAs effectiveness of a network also depends on the size and heterogeneity of the network, all experts were asked: \"All in all, which and how many HCPs and services in total are involved in the care network of an ALS patient?\" Fig.\u0026nbsp;3 illustrates how many players may need to be involved in order to provide best care for an ALS patient at home from the time of diagnosis (stage 1) to the time of highly advanced disease (stage 3). This includes HCPs from the inpatient and home care sectors, suppliers, volunteers and (lay) community from the community. In addition, social and legal counselling as well as spiritual care are essential at certain points. Figure\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e shows a fast-growing care network with many HCPs within a relatively short planning horizon. However, some of these services may be difficult for patients to access as they would not usually visit patients at home.\u003c/p\u003e\u003cp\u003eAs can be seen, the need for healthcare providers in the home care network may double or triple as the disease progresses. This means that more than 15 organisations with more than 50 people may (have to) be involved in the care of a single patient with ALS.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eLack of continuity of care in the home care setting\u003c/h2\u003e \u003cp\u003eContinuity of care is an important pillar for people with severe illnesses and complex care needs who are dependent on the availability of therapists and specialists at home. In the area of home care, close monitoring of ALS patients with severe physical impairments (limitations in communication skills and mobility) is considered necessary, which is also one of the greatest challenges. All HCPs pointed out that ALS is a rare disease that poses at the same time many exceptional challenges for the provision of appropriate care compared to patients with more common diseases. Therefore, all HCPs interviewed showed a high willingness to provide more support to ALS patients and to take more time for appointments with them than for other patients. However, only specialist palliative home care teams offer proactive follow-up calls. As HCPs lack resources and expertise in dealing with ALS, there is no guarantee that patients will receive timely access and support, especially when problems with mobility, communication or respiratory symptoms occur. Most HCPs were aware of the fact that this leads to insufficient management of crises that should be easily managed at home. All in all, a lack of home visits causes further problems with symptom management and subsequent hospitalisation. Consequently, almost all HCPs experienced home care support for ALS patients as insufficient.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"GPs don't understand the problem at all. Leave them alone [they say]. The therapists go away when [the patient] refuses treatment. (...) They [the therapists] just say to us, I'm not going back there again. You have to find someone else for this patient. But we, we are here 24/7. What are we supposed to do? There is no one else, nowhere. (...) There's nowhere to turn for support, so we have to rely on discussions within our team to find a solution.\" [Intensive home nursing team_2; home care setting]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe German healthcare system only provides specialist palliative care at home for patients who require PC. Hence, all care providers and GPs interviewed reported that other specialists are not available when patients cannot visit the specialist's practice. Nearly all specialists interviewed confirmed that they try to minimise their responsibilities in terms of availability and home visits. The reasons for this were a lack of time and unattractive remuneration. In relation to continuity of care, all referred to another person and viewed the management of upcoming crises as \"another person's problem\" in the home care network. Answers to the question \"What do you do when patients no longer turn up for appointments?\" exemplified the unavailability of specialists, a refusal of responsibilities and therefore a lack of continuity of care for ALS patients who want or have to stay at home.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"(...) and I said: You know what? The first who provides home visits is your GP. If you have any questions about breathing, you can call me. We'll try to sort it out on the phone first, and if I have to, I would visit you.\" [Pulmonologist_8, in private practice]\u003c/p\u003e\u003cp\u003e\"That's right, I don't make house calls because I don't have the time. It's not possible to just turn up here, only in case of emergencies. That's due to our limited resources. At the moment, we have a six-month wait for an appointment. (...) I am very happy that we are situated close to a university hospital with a specialised outpatient clinic, and surely there is a better treatment.\" [Neurologist_11; in private practice]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe specialists would like to outsource the home visits to a GP or to specialists of a neurological outpatient clinic at the hospital site. The latter seemed odd, as the neurological ambulatory centres at a hospital site do not have the structural conditions, resources, status or statute to provide home visits at all (funds, special contracts with health funds, manpower etc. or legal foundation)\u003c/p\u003e \u003cp\u003eHowever, the GPs and home care teams surveyed are confronted with unwanted additional responsibilities and tasks. Not knowing how to provide good quality home care for patients with breathlessness even in the early stages, one GP told us that they try to persuade patients to move to a specialised care home.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"Otherwise, I would worry [...] about patients in general care homes or at home, especially when it comes to ventilation issues. [...] I don't feel comfortable if there is no one 24/7 with sufficient expertise.\" [General practitioner_10; in private practice]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eNearly all HCPs who frequently deal with ALS patients did not feel competent enough or believe they had the specialised skills required to care for patients with such complex and extensive care needs at home. Especially if the if the disease progresses and the patient is bedridden. Most physicians (GPs and specialists) felt relieved when patients utilised a 24/7 intensive home nursing team (which in the German system is reimbursed by statutory health insurance companies for all patients on invasive mechanical ventilation). However, the intensive home nursing teams were faced with a lack of coordination within a fragmented care network. The team tried to take on a coordinating role, although this was not their responsibility. At the same time, these teams already felt overwhelmed with their actual task due to the complex needs of ALS patients.\u003c/p\u003e \u003cp\u003eThe experts predominantly confirmed that it is difficult to find specialists for home visits and that they usually rely on their own personal network. The high fragility of such informal care networks became particularly clear when individual colleagues retired and the HCPs were unable to find a replacement in the region.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eLack of common treatment and care goals\u003c/h2\u003e \u003cp\u003eMost HCPs mentioned that differing treatment approaches and care goals led to serious friction and mistrust in the care network. A PC nurse stated that she struggled with implementing a PC approach among the (intensive) home nursing services, e.g. to avoid medical check-ups that have no impact on the medical care plans in a palliative situation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \"So, I tried to suggest a change of attitude in this care service [...] A gentle touch, an attitude of caring, a massage can be very comforting [...]. So that they (...) don't take blood pressure twice a day, take a temperature three times a day, etc., because that's how it's always been done. \" [specialist palliative home care team_1; home care setting]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eA critical point in the disease trajectory are decisions about mechanical ventilation. One of the pulmonologists in the home care setting reported how intensive home nursing teams began to distrust him because he initiated a discussion with a patient about treatment preferences regarding maintaining or terminating invasive mechanical ventilation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"When a patient thinks about how much longer they want to endure this and would rather prefer to die, they [the nurses] say: \"Well, it's just a depressive phase\" and try to get this confirmed by a person who can't speak [...]. I then get the impression that they don't want the pulmonary specialist to come back soon, because they don't approve of a different approach. [...] But we must talk about ending mechanical ventilation.\" [Pulmonologist_8; in private practice]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAn intensive home care nurse confirmed this statement and underlined her ethical concerns about withdrawing mechanical ventilation. However, she also admitted not being qualified enough to give advice on this topic. The data illustrate that even when individual HCPs set care goals with patients, this may not be (easily) communicated with other HCPs in the care network, so a multidisciplinary team approach was often lacking.\u003c/p\u003e \u003cp\u003eThe following sections show that tensions can arise due to a lack of shared treatment goals or agreement between the HCPs involved.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eLack of care coordination\u003c/h2\u003e \u003cp\u003eAs part of the study, we asked the question: \"Who coordinates the care?\" The pooled results showed a strong fragmentation and lack of clarity among professionals regarding responsibilities and actions. Most experts considered care coordination to be important and felt that it was their own responsibility to organise care or coordinate the persons involved. During the interviews, the experts acknowledged that coordination is not merely the \"trivial\" task of communicating treatment and care goals to others. The analysis clarified that coordinating the care network is too time-consuming for most HCPs in their daily routine. The interviews unfold that the terms coordination, optimisation and information are understood differently, as the following quote from a neurologist illustrates:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"That's the physician\u0026rsquo;s job (...) yes, we support the patient, (...) we give recommendations (...) but we very rarely make phone calls. That would be too time-consuming. (...) we hand out a list of addresses.\" [Neurologist_4; in private practice]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSome experts told patients which additional services they should involve and gave them a list of addresses. Only one GP said he assesses needs, defines treatment goals and contacts appropriate services or therapists. Another doctor merely hoped that someone else would feel responsible. Overall, the impression of the specialists was:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\"Well, I do coordinate some things, but I'm actually very dependent on others, such as well-informed family members or others who step in.\" [Neurologist_5\\ in private practice]\u003c/p\u003e\u003cp\u003e\"Nobody, hopefully the caregiver.\" [Neurologist_2, inpatient sector]\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAll in all, none of the interviewees named a single responsible coordinator, while at the same time the areas of responsibility remained unclear. Neither neurologists nor pulmonologists visited patients regularly or participated in coordination tasks, such as organising access to other services or specialities or coordinating information and treatment goals between all HCPs involved in the care network. The main arguments cited were a lack of information about which services patients are entitled to use according to the Social Code Book, that they do not have access to services in the region and that they do not have time to optimise or coordinate a patient's care (network).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eQuantitative survey among healthcare facilities in North Rhine-Westphalia\u003c/h2\u003e \u003cdiv id=\"Sec12\" class=\"Section3\"\u003e \u003ch2\u003eLack of care coordination\u003c/h2\u003e \u003cp\u003eOf the 393 addresses listed, half of the facilities were surveyed: PC services 179 of 196 and 17 respondents from neurological centres. (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e) A small percentage (7%) stated that they were not the right contact person for this service, 2% refused to participate and 39% were unsuccessful in making contact by telephone. Of the 59% of the centres contacted, 84% (n\u0026thinsp;=\u0026thinsp;140) completed the survey, some of them expressing great interest in this study.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eResponse rate calculation\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003einpatient hospices\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003evolunteer hospice services\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003especialist palliative home care teams\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePC unit\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eneurological centres\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eresponse rate (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e39%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e65%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e47%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e66%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e23%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003enon-response (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e61%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e35%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e53%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e34%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e77%\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e50%\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003etotal (n)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e147\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e52\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e393\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eresponse rate (n)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e94\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e196\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"7\" nameend=\"c7\" namest=\"c1\"\u003e \u003cp\u003eSource: own data 2017/18; calculated according to the American Association for Public Opinion Research (AAPOR)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eAccording to the survey conducted in the NRW region, the PC providers estimated that around 2% (median) of their patients were diagnosed with ALS in 2016. Almost half of the PC services (47%) provided care for ALS patients for more than five weeks. Most PC services (80%) reported coordinating treatment and care for all ALS patients in their service. Additionally, 74% of the services optimized care for all ALS patients, and 84% provided guidance to all caregivers of ALS patients. Of the 17 neurological centres surveyed, seven treated their ALS patients for more than five weeks, 11 provided coordinated care, and six optimized care for all patients. Nine centres provided guidance to caregivers for all ALS patients (53%). (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e)\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePercentages of valid health care institutions in NRW\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePalliative care services (n\u0026thinsp;=\u0026thinsp;179)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNeurological centres (n\u0026thinsp;=\u0026thinsp;17)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eCoordination of treatment and care\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor none\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (9%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor some\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (11%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (35%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor all\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e88 (80%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (65%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003etotal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e110 (100%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eOptimisation of the care situation\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor none\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor some\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20 (18%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (65%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor all\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e81 (74%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (35%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003etotal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e126 (100%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSupport and guidance of caregivers\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor none\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor some\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (13%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (47%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003efor all\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e95 (84%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (53%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003etotal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e113 (100%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSource: own data 2017/18 and calculations.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eSummary of applied game theory\u003c/h2\u003e \u003cp\u003eWe used a synthesis of game theory to analyse the statements of the HCPs interviewed in order to better understand the actions they take place and the problems they cause. (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eOur data, applied to Nash's theory of non-cooperative games, show that multiple HCPs (n-persons) are involved in the home care for ALS patients. Figure\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e4\u003c/span\u003e shows that the following factors have an impact on the outcome value Q of the collaborating teams:\u003c/p\u003e\u003cp\u003ea) Formation of sub-assemblies and unequal flow of information\u003c/p\u003e\u003cp\u003eb) Lack of common treatment and care goals\u003c/p\u003e \u003cp\u003ec) (Partial) Lack of continuity of care in the home care setting\u003c/p\u003e \u003cp\u003ed) Lack of care coordination; absence of home visits\u003c/p\u003e \u003cp\u003eThe findings show that independent actions and sets of strategies of HCPs are linked to organisational routines, stimulus-response actions and functional differentiation within the German healthcare system. The assumption of a lack of Nash equilibrium was also confirmed.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eALS is a rare disease that requires complex treatment and comprehensive (home) care. As curative therapy is not available, patients require counselling and symptomatic palliative treatment, as recommended in the S1 guidelines of the German network of neurologists. (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Patients, caregivers and HCPs are faced with a variety of complex needs and difficult ethical questions that cannot be easily answered by a single HCP. Furthermore, due to the advanced stage of diagnosis, there is a need for a rapidly growing, dynamic interdisciplinary care network. The coordination of this network can be overwhelming for those involved.\u003c/p\u003e \u003cp\u003eBest patient-centred (palliative) home care for ALS patients in the region includes comprehensive information about local services and physicians who provide home visits. Insufficient knowledge of treatment and care pathways and lack of experience with ALS patients leads to problems and mistrust between HCPs in maintaining appropriate treatment and home care. Our data confirm that there is a lack of a common outcome value Q, mainly due to the constraints of daily practice, organisational routines, communication failures, lack of transparency and limited resources (lack of a shared care goal and binding agreements). The absence of common care goals can lead to mistrust, particularly in situations such as mechanical ventilation, psychological treatment, or ethical dilemmas, where a lack of knowledge and misinformation exists within the care network. This results in additional organisational and communicative efforts for each person, leading to time-consuming exchange within the care network. When making decisions with serious consequences, such as withdrawing or refusing ventilatory support, our data shows that the individual behaviour and actions of HCPs involved are not related to group behaviour and form sub-assemblies. ALS patients, caregivers and HCPs would clearly benefit from early integration of specialist palliative care, as emergency plans drafted in accordance with patients, a comprehensive care plan including coordination and advance care planning are often missing.\u003c/p\u003e \u003cp\u003eThe central role of coordinating the care network was claimed by various HCPs. GPs play a central role in the German healthcare system in channelling patient treatment and care pathways. In contrast, some HCPs stated that the main coordinator should be a neurologist, as ALS is a neurological disease. (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) However, neurologists in Germany do not provide home visits, and both the neurologist and the GP are usually not available outside consultation hours. Therefore, no support can be guaranteed for crises that occur in the home environment. The data unveils that an unattractive remuneration system (uneven payoffs) within an ALS home care network has a negative impact on availability and may lead to a passing-on of responsibilities.\u003c/p\u003e \u003cp\u003eAs part of our study, we observed uneven financial systems that lead to insufficient home care for ALS patients (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) as the actions of the multi-agent network are bound by limited resources such as time, daily routines and economical behaviour. Although in Germany most specialists and therapists do not visit patients at home due to unattractive renumeration and lack of resources, our study discovered that some HCPs were available as part of informal networks or as a favour to a friend, albeit in most cases only for situations with dire needs. However, this left most patients with advanced ALS without continuity of care in the home care sector. Support in the home setting relies on knowledge and personal commitment of single HCPs, but physicians have little time for phone calls during and outside of their office hours. Most of the interviewed HCPs showed reluctance to invest more time to optimise treatment and care pathways (non-cooperative). To maintain the best quality of life for patients with a life-threatening disease, the healthcare system (statutory and private health insurance schemes) should implement adequate incentives for home visits of specialists.\u003c/p\u003e \u003cp\u003eThis gap of home visits by HCPs could be closed by the timely involvement of a multi-professional specialist palliative home care team. These teams are available 24/7, have profound knowledge of cooperating healthcare providers and services in the region and ensure an equal flow of information between all persons involved. Nevertheless, as our regional sample shows, these teams would need to ensure that they collaborate with neurologists and outpatient clinics for ALS patients and improve their own expertise in the care of ALS patients.\u003c/p\u003e \u003cp\u003eEmphasis was placed on multi-professional and interdisciplinary collaboration, which requires organisational, coordination and communication skills. Quantitative data from healthcare facilities in NRW show that palliative care and neurology believe that coordinating and responding to the complex needs of patients and caregivers is part of their service. However, most experts confirmed that patients and caregivers are left alone in managing access to highly diverse specialists and the communication flow in the care network. Using game theory, we observed 'mass actions' without full information about a common patient-centred care goal.\u003c/p\u003e \u003cp\u003eIn summary, our study makes clear that coordination of all HCPs involved is a prerequisite for an effective, well-functioning care network that is able to respond to the complex needs of patients and provide sufficient support. Integration of specialist palliative home care teams may not be necessary in care networks if there is a clearly communicated responsible person due to the compassionate behaviour and personal investment of a single person (GP, neurologist or nursing service) with sufficient expertise in case management; a clearly communicated responsible person. However, our data has shown that the latter is not the case. Thus, to keep the personal burden low for all HCPs involved and while keeping the personal engagement high it is beneficial to involve a specialist palliative home care team to find consensus on treatment goals, develop a care plan including emergency planning, and support the patient and caregivers with advance care planning.\u003c/p\u003e \u003cp\u003eThe application of Nash's theory of non-cooperative games helps to understand the complexity of factors that affect the outcome of multi-dynamic actions within a network. When, as shown by our data, certain regulations in the German healthcare system and actions of HCPs will lead to high costs and low benefits for single entities (Nash`s equilibrium), this is not only true on the financial level, but also on the qualitative level of care, care continuity, patient safety, and effectiveness and job satisfaction of HCPs.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eAs part of the study, palliative care was integrated early on with a single point of contact to provide individualized, process-controlled case management in line with the patient's needs. Additionally, the main contact helped navigate the fragmented German healthcare system and identify rights to medical treatment, services, and assistance. This service is considered necessary and extremely helpful by patients, caregivers, and HCPs. It is also a trust-building procedure at an early stage, reducing uncertainties and preventing premature or excessive use of treatment pathways. However, it has not yet been structured and is currently reliant on donations.\u003c/p\u003e \u003cp\u003eIt is recommended to appoint a care coordinator from the time of diagnosis to ensure access to and good quality home care for each patient. The coordinator should be responsible for navigating, organising and networking all the people in the care network to provide personalised process control. The care coordinator performs routine standardized assessments and adjusts treatment objectives to the patient's changing priorities and goals, particularly as the illness advances and during and after crises. Additionally, the coordinator should be accessible outside of regular office hours to prevent or decrease hospital admissions.\u003c/p\u003e "},{"header":"Methods","content":"\u003ch2\u003eQualitative interviews\u003c/h2\u003e\u003ch2\u003eStudy population and interview phase with healthcare professionals\u003c/h2\u003e\u003cp\u003eTo obtain a comprehensive description of the situation and needs of ALS patients living at home, a mixed-methods design was used. Physicians from the fields of palliative medicine, neurology, pulmonology and general practitioner care, as well as three senior nursing staff and one person from the field of social work were requested for interviews. So, 15 purposefully selected HCPs with many years of practical knowledge about ALS patients from inpatient and home care sector were interviewed. The guided interviews were conducted between May and August 2017 in the city of Bonn and the Rhein-Sieg county. (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) The aim was to achieve professional validity by interviewing at least two experts from each professional group. This selection of care providers made it possible to analyse cross-sectoral cooperation, gaps in care and conditions for effective treatment pathways. All participating HCPs were informed about the study, had time for questions and signed an informed consent. They also signed a consent for publication with anonymous data.\u003c/p\u003e\u003ch2\u003eDesign, Survey contents and analysis\u003c/h2\u003e\u003cp\u003e Based on an interview guideline with open questions relating to ALS the following keywords \"security, autonomy, future prospects, relief from responsibility, decision-making skills and the ability to plan\" were addressed. In-depth questions on the main topics were asked when necessary and helped to reveal the basic attitude as well as regularity of the participants' own working methods. This approach also allows a sequential interpretation of the data material, as \"at each sequence point of a course of action (...) on the one hand, a selection could be made from the connection possibilities that were regularly opened up by the preceding sequence points, and on the other hand, a scope for future connection possibilities could be opened up\" (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This meant that the central topics of \"care planning and care process\", \"early palliative care connection\", \"own needs\", \"offers\" and \"experiences with a palliative care programme\" could be addressed, \"services\" and \"experiences with an ethics committee\" could be analysed for the respective profession with its care provision (e.g. specialists, specialised outpatient palliative care service).\u003c/p\u003e\u003cp\u003eAll interviews were recorded, transcribed verbatim and analysed thematically using MAXQDA. (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) One of the authors (GA) used open coding to identify themes relevant to the research question. The themes for the purpose of this paper were the size of the home care network, availability of HCPs and services in home care, lack of access to certain services or specialists, continuity of care (by a common care goal), organisation, optimisation and coordination of the care network, and communication. Two authors (GA and LR) checked consistency and intercoder reliability by discussing ambivalent codings and text fragments. (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) Subsequently, GA deductively applied the main codes and subcodes to all interview transcripts. Overall, we used a selective coding procedure to identify and integrate relationships between categories. (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) We selected illustrative quotes to give an insight into the observed typical behaviour in practice.\u003c/p\u003e\u003ch2\u003eQuantitative interviews\u003c/h2\u003e\u003ch2\u003eStudy population and interview phase with healthcare facilities in North Rhine-Westphalia\u003c/h2\u003e\u003cp\u003eA full census survey of PC services in North Rhine-Westphalia (NRW); inpatient hospices, PC units, specialist palliative home care teams and neurological centres was conducted by GA and AG in 2017. A required representative sample size (± 5%, n = 162 of 277) was calculated for volunteer hospice services using an online power analysis calculator.\u003c/p\u003e\u003ch2\u003eDesign, Survey contents and analysis\u003c/h2\u003e\u003cp\u003eThe predominantly closed questionnaire used the entry question \"Did you have ALS patients in 2016?\" as inclusion criteria in all surveys. If no, the inquiry stopped. The items of the standardised questionnaire (developed by GA, AG, BJ and pre-tested on n = 6) resulted from qualitative interviews and the German S1 guidelines of neurology for the care of ALS patients. (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Most of the closed questionnaires were designed to be completed within ten minutes. The Statistical Programme for Social Sciences (SPSS) was used for the descriptive analyses of the quantitative data. Only valid answers were discussed.\u003c/p\u003e\u003ch2\u003eStudy population and disease assessment with ALS patients\u003c/h2\u003e\u003cp\u003eBetween May 2016 and September 2018 through a convenience sampling procedure two nurses specialised in PC recruited patients in the ALS outpatient clinic at a University Hospital in NRW. The study was approved by the Ministry of Health of North Rhine-Westphalia. The study was performed in accordance with all relevant guidelines and regulations. Hence, the study's procedures involving human participants adhered to the ethical standards of the University Hospital Bonn and followed the 1964 Helsinki Declaration and its later amendments. All study participants were informed about the study, had time for questions and signed an informed consent. They also signed a consent for publication with anonymous data.\u003c/p\u003e\u003ch2\u003eDesign, Survey contents and analysis\u003c/h2\u003e\u003cp\u003e All patients were systematically assessed using the validated and standardised German minimal documentation system (MIDOS) for patients in palliative care and the validated ALS Functional Rating Scale ALSFRS. MIDOS records ten symptoms (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath on four-point Likert scales). (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) ALSFRS documents the deterioration progress of physical functions on five-point Likert scales and thus the patient's independence in coping with activities of daily living. (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) The German hospice and palliative care assessment tool HOPE, which is documented by a doctor, includes information on symptoms, medication, current and previous care setting and the burden of caregivers. (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). The 141 mainly close ended questionnaire contains information on patient's socio-demographic data, patient's need for spiritual care, consultations, and ethical decisions needs.\u003c/p\u003e\u003cp\u003eThe Statistical Programme for Social Sciences (SPSS) was used for the descriptive analyses of the quantitative data. Only valid answers were discussed.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eALS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eamyotrophic lateral sclerosis\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHCPs\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ehealthcare professionals\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eGP\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003egeneral practitioner\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003epalliative care\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eMAXQDA\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003esoftware for analysing qualitative data\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eSPSS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003esoftware for analysing quantitative data\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data sets generated and/or analysed as part of the current study are not publicly accessible due to sensitivity and wording restrictions in the consent form and may therefore only be used and analysed by the researchers involved in the current study. However, completed analyses are available upon reasoned request to the author Lukas Radbruch ([email protected]).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe project was funded by ALPHA North Rhine-Westphalia between Dec. 2016 and Oct. 2018.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study acknowledges that the data patterns are mainly qualitative and specific to one region in Germany. In addition, most of the respondents were from a region with predominantly strong regional health care provision. Nevertheless, it is argued that the findings can provide valuable insights into the underlying gaps, organisational challenges and legal boundaries of competition within the German healthcare system. It has become clear that even in structurally strong areas, home care networks are largely based on personal contacts rather than exclusively on institutionally constituted actions. These findings therefore highlight the need for further improvements in the healthcare system, in particular to secure a patient\u0026apos;s home care network.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eGA and LR supervised the project. GA, BJ and LR developed and designed the study. BJ, PW and LR helped with the recruitment of interview partners. GA and LR analysed the qualitative and quantitative data. GA and BJ drafted and revised the manuscript with critical comments, review and editing from LR and MM. All authors reviewed and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank Andrea Gasper, Stephan Lange, Jasmin Ewert and all participants in North Rhine-Westphalia for their time and support of our survey.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eLudolph AC. Amyotrophe Lateralsklerose (Motoneuronerkrankungen). Leitlinien f\u0026uuml;r Diagnostik und Therapie in der Neurologie Stuttgart, New York: Thieme. 2012:254-63.\u003c/li\u003e\n\u003cli\u003eRaheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2016;17(3-4):198-205.\u003c/li\u003e\n\u003cli\u003eRooney J, Byrne S, Heverin M, Tobin K, Dick A, Donaghy C, Hardiman O. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86(5):496-501.\u003c/li\u003e\n\u003cli\u003eNash J. Non-Cooperative Games. Annals of Mathematics. 1951;54(2):286-95.\u003c/li\u003e\n\u003cli\u003eBonanno G. Non-cooperative Game Theory. 2008.\u003c/li\u003e\n\u003cli\u003eFalk A, Kosfeld M. The Hidden Costs of Control. American Economic Review. 2006;96(5):1611-30.\u003c/li\u003e\n\u003cli\u003eFalk A, Kosfeld M. It\u0026apos;s All About Connections: Evidence on Network Formation. Institute for the Study of Labor (IZA), IZA Discussion Papers. 2003;11.\u003c/li\u003e\n\u003cli\u003eAxtell R. Non-cooperative dynamics of multi-agent teams2002. 1082-9 p.\u003c/li\u003e\n\u003cli\u003eLevinthal DA. Organizational Capabilities in Complex Worlds. In: Dosi G, Richard R. Nelson, and Sidney Winter, editor. The Nature and Dynamics of Organizational Capabilities. 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Aktuelle Neurologie. 1998;25(03):115-22.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"amyotrophic lateral sclerosis (ALS), palliative care, gaps in home care, case management, care coordination, game theory","lastPublishedDoi":"10.21203/rs.3.rs-4018682/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4018682/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThe 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\u0026thinsp;=\u0026thinsp;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\u0026rsquo; 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.\u003c/p\u003e","manuscriptTitle":"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.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-04-09 13:24:27","doi":"10.21203/rs.3.rs-4018682/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"0b905c65-2b3c-4a1d-b063-223d314c6d57","owner":[],"postedDate":"April 9th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":30405581,"name":"Biological sciences/Neuroscience/Diseases of the nervous system/Amyotrophic lateral sclerosis"},{"id":30405582,"name":"Health sciences/Health care"},{"id":30405583,"name":"Health sciences/Health care/Health services/Palliative care"}],"tags":[],"updatedAt":"2024-06-19T05:46:03+00:00","versionOfRecord":[],"versionCreatedAt":"2024-04-09 13:24:27","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4018682","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4018682","identity":"rs-4018682","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}