Care situation for patients with spastic movement disorder in inpatient settings
Care facilities in Germany

Damage to the central nervous system and the central nervous sensorimotor cell and pathway systems often result in spastic movement disorders (SMD). According to the guidelines for the treatment of spasticity syndrome (AWMF/DGN), spasticity is defined as "increased, speed-dependent stretch resistance of the skeletal muscles, which occurs as a result of a lesion of the descending motor pathways of the central nervous system (CNS) (cerebrum, brainstem, spinal cord) and usually accompanied by other symptoms such as muscle paresis, slowing of movement, increased intrinsic muscle reflexes, pathologically uninhibited synergism and spastic dystonia". In earlier studies, spasticity was described as a "rate-dependent increase in muscle tone resulting from hyperexcitability of the spinal tonic stretch reflex" [1]. An expanded definition of the SPASM group refers to spasticity as positive phenomena produced due to a disturbance in sensorimotor control resulting from a lesion of the first motor neuron. The manifestation is persistent involuntary activation of muscles [2]. SMD is a common syndrome of diseases such as stroke, multiple sclerosis or traumatic brain injury. According to estimates, up to 260,000 people in Germany suffer a stroke every year [3]. Almost half of survivors (up to 46%) experience spasticity within the first three months after the stroke [4, 5]. Spasticity can also develop at a later point in time [4]. Severe paralysis and sensory disorders are predictors of the development of spasticity, e.g. B. as a result of a stroke, and can be associated with severe limitations in coping with everyday life [6]. If you look at the time periods after a stroke in more detail, it can be seen that within the first four weeks at 4% to 27% the patient spasticity could be observed. The prevalence increases to 19% to 26.7% in the post-acute phase (one to three months). Over a period of three months there is a PSS (Post Stroke Spasticity) of 17% to 42.6% [4].

>> The quality of life is impaired to varying degrees depending on the individual case. In addition to barely noticeable clinical manifestations, mobility and self-care can also be severely impaired [7]. Difficulty performing physical hygiene and self-care, decreased self-esteem, and disturbed self-image may be other complications that arise as a result of spasticity [8]. Various comorbidities represent an additional burden for patients, relatives and nursing staff, which can sometimes affect the patient's rehabilitation [8]. In addition to the strain on nursing capacities, the healthcare costs for caring for patients with SMD after a stroke are four times higher in the first year [9]. The majority of patients feel their quality of life is impaired and suffer from a loss of independence, depression and mood swings and pain in the upper extremities [10, 11].
According to the guidelines for the therapy of the spastic syndrome of the German Society for Neurology [12], there are various therapy recommendations that should lead to an improvement in motor functions, easier care and pain relief. The S2e (evidence-based) DGNR guideline “Treatment of spasticity after stroke” [13] was also taken into account. Depending on the type and severity of the disease, various exercise treatments are recommended to improve passive and active motor functions. In addition to "conventional" physiotherapy, other non-drug therapy measures such as movement induction therapy, device-supported passive movement and physical therapy (thermal, shock wave, electrical stimulation and magnetic stimulation therapy, whole-body vibration) have their right to exist.
Oral antispastic drugs should only be used if spasticity cannot be adequately controlled despite adequate physical and therapeutic measures. The injection of botulinum neurotoxin A, which takes place every 3 months
(BoNT A) is said to be preferable to oral antispasmodics for the treatment of focal, multifocal and segmental spastic increased tone and can be supplemented with other adjuvant therapies. The intrathecal baclofen pump (ITB) should only be used after unsatisfactory physical, physiotherapeutic and oral drug treatment attempts. Additional surgical interventions may prove useful in individual cases.
Guideline-based care for patients with SMD is not available across the board or with a given regularity in Germany [13-19]. According to the guidelines, patients should only be provided with oral pharmaceuticals if “spasticity relevant to everyday life cannot be adequately controlled despite adequate physical and therapeutic measures,” as undesirable side effects such as impaired drive and sedation often occur [12]. Nevertheless, in Germany, patients are often mistreated or undertreated with oral pharmaceuticals instead of physical and occupational therapy, ITB and BoNT A [13-19]. This incorrect or under-care could be demonstrated using patients with spastic movement disorders after a stroke, especially when the treatment was not interdisciplinary but by general practitioners [14]. This can have serious consequences for the quality of life of patients as well as negative economic effects [16, 20]. Multiprofessional collaboration seems to be essential to ensure efficient care. This care does not seem to be realistic for patients, especially in inpatient care facilities, due to the additional burden. With the help of a survey, the reality of care of patients with SMD in inpatient care facilities in Germany is to be evaluated and potential problems of incorrect and undercare are to be examined.
methodology
In addition to the publication by Potempa et al., who analyzed the care situation in Germany for patients with SMD, data collection was carried out on the care situation for patients with SMD in inpatient care facilities. The retrospective survey of general practitioners in private practice included a two-page questionnaire aimed at practicing general practitioners so that the treatment decisions, which were at the discretion of the participating doctors, could be presented. The total of 26 questions include demographic and disease-relevant data of the respective patients, information on the therapeutic procedures used and referrals to specialists.
For recruitment, a total of 300 randomly selected general practitioners in Germany were contacted by post. The returns were entered into an existing database system and analyzed using descriptive-statistical methods. The surveys were carried out at the beginning of 2021, with the questions themselves relating to the second half of 2019. An initially planned survey for 2020 was ultimately refrained from, since the extraordinary situation caused by the coronavirus this year could have led to unforeseeable distortions in the reality of care. In this context, any uncertainties in the evaluation should generally be excluded.
Results
The presentation of the results of this survey can be divided into two parts. At the beginning, demographic information and information about the patient's clinical picture are presented. In the second section, the results regarding the care situation including the therapeutic measures used and the possible cooperation with other specialists are listed.

Demographic data and clinical picture of the patients
In total, data on 97 patients were collected by the 24 participating general practitioners. They contain information on the demographic structure and the clinical picture as well as the care situation in the context of primary care treatment of patients with SMD who are housed in nursing facilities (Table 1)
The average age of the patients is around 70 years (69.85) and the median is 71 years (Table 1). 59%, i.e. 57 of the 97 patients, lived in a retirement or nursing home, 16% in an assisted living facility and 15% in a facility for people with disabilities. 9 further patients (9%) did not live in an inpatient care facility and were cared for at home by a nursing service.
As described in the introduction, SMD can occur due to many possible causes. The most frequently cited cause in this patient population is a stroke in 43 of the 97 patients (44%). In 24% the etiology is explained by cerebral palsy and in 16% by traumatic brain injury. Other causes include multiple sclerosis (5%) and a spinal cord lesion (3%). Other causes are mentioned in 13 patients (13%), including accidents, dementia, hydrocephalus, poliomyelitis, Huntington's disease, Korsakoff's disease, Alzheimer's disease, Parkinson's disease and Dupuytren's contracture scleroderma.
In addition, the severity of the patient's illness was asked from the treating general practitioners. In 31% patients, the SMD occurs on one side, on one arm and one leg each. In 26% it is multifocal and localized bilaterally on the legs in 13%. The expression on all limbs in 20% and in only one arm on one side in 10% of the patients was stated by the treating physician. The focal (1%) and bilateral (3%) locations on both arms are the least common. A doctor did not provide any information about the severity of the movement disorder for a patient. The severity of the SMD is rated as “severe” by the attending general practitioner in 47% patients. 46% of patients reported “moderate” and only 6% had a mild movement disorder.
The existence of a level of care is relevant both for the presentation of the care situation of the patient collective and for the health economic and social consequences that can be derived from it. Of the 97 patients, 69% have a care level of 3 or higher. 20% have care level 3, 24% the fourth and 25% the fifth care level. A total of 13% of patients have no or only a low level of care (3% no level of care, 5% each of care level 1 and care level 2). For 19 percent of patients (18 of 97), the treating doctor did not provide any information about the level of care.
Due to the serious loss of motor skills and the resulting limitations in everyday life for patients, SMD can be an important factor for a higher level of care classification. For 61 of 97 patients (63%), the doctors surveyed stated that the respective patient was assigned a higher level of care due to the SMD. In 13% (13 patients) this statement was denied and in 24% no information was given.
A number of comorbidities occur as a result of SMD. Mental illnesses are becoming more common. In this survey, 49% patients were diagnosed with depression. Another side effect in 47% patients is a contracture of the joints (Fig. 1).
Pressure ulcers occurred in 24% patients and skin macerations occurred in 11%. Occurring infections are another possible side effect with 9%. In the case of 4% of the patients, the attending physician indicated additional diseases, including recurrent decubitus, which can be understood as an indicator of inadequate care, neuralgia, lymphedema and obesity. In 18% patients (17 of 97), the doctor did not answer this question.
Due to its severe symptoms and the associated restrictions in independent living, the SMD often leads to great suffering for the patients. In this survey, the patient in 52% was classified by the general practitioner as “considerable” and in 38% as “moderate”. Only in 8 patients (8%) was the doctor noted that the patient suffered less. In 2 patients, this question was not answered by the treating doctor.
Patient care situation
in Germany
An important question is to what extent everyday care corresponds to treatment in accordance with guidelines. The corresponding results are presented below. In addition to information on drug therapy and the number and type of doctor visits, this also includes referrals to other specialist disciplines.
According to the general practitioners, 38% of patients contacted their family doctors 1-3 times in the second half of 2019. Doctor-patient contact occurred 4-6 times in 30% and 7-9 times in 16%. For the remaining 15 patients (15%), 10 or more medical appointments were recorded by the doctors. In this patient population, the type and frequency of contact with doctors is determined by the living situation in a care facility. For the majority of patients, 88% (85 patients), the doctor-patient contact came about through a home visit by the doctor in the respective facility. Only 12 patients (12%) visited the treating doctor's practice.
The results listed below relate to questions that focus on the specific treatment of these patients' SMD by general practitioners.
Occupational and physiotherapeutic treatment is necessary for this group of patients to be treated in accordance with the guidelines. When it comes to non-invasive therapy methods, physiotherapy was reported as the most common method. 86% of the patients received physiotherapy to reduce the SMD. Orthoses were used in 13% and 3% patients received acupuncture therapy. In addition, in 18 patients (19%), additional non-invasive therapeutic measures were mentioned by the doctor, including the use of CBD drops, physiotherapy, use of a wheelchair, active exercise in the care facility, occupational therapy and lymphatic drainage. If physiotherapy was prescribed to the patients, 12-24 sessions were ordered per six-month period for 40% patients and 6-12 or more than 24 sessions for 24% and 25% (23 or 24 patients out of 97 each). . Only one patient was ordered to have fewer than 6 sessions. In 10 patients (10%), the respective doctor did not answer this question.
The most common reason for a lack of physiotherapy in treatment was the rejection of seven patients (50%). Other reasons are the lack of clinical success assessed by the respective doctor (14%) and the situation that there was no medical indication for it (21%). For one patient (7%), this treatment option was not available nearby, for another patient (7%), the costs were not covered or only partially covered by health insurance. In another patient (7%), the treating doctor explained that no physiotherapy
therapy was prescribed due to the patient's old age and very advanced limitations. No information was provided on this question for another patient (7%).
Targeted exercise offers in the respective facilities can promote treatment and bring about an improvement in SMD. However, for 58 patients (60%) there are no special exercise or therapy offers in the respective inpatient facility, for 29 patients (30%) such offers are available in the nursing homes. No information was provided for 10 patients (10%).
In addition to physiotherapy, depending on the severity of the SMD and the effect of the physiotherapeutic measures, drug treatment is also essential and is recommended in the relevant guidelines of the specialist societies. Therefore, data on the medication provided by family doctors was also collected in this survey. Antispastic medications were used in 61 patients (63%), but not in 31 patients (32%). The treating doctor did not provide any information about this for 5 patients. The results of the use of oral antispastic medications are presented below. The most frequently prescribed medications by doctors were baclofen (61%), gabapentin (34%), tolperisone (23%) and L-DOPA (10%) (Fig. 2).
Other medications were used in isolated cases, including tizanidine (7%), dantrolene (2%), clonazepam (3%), diazepam (7%), and memantine (3%). Four patients (7%) were treated with other medications (pregabalin, quetiapine, pramipexole) that were not taken into account in this questionnaire and were additionally stated by the doctors.
The most common reasons for not prescribing oral antispastic medications were patient refusal (29%), lack of prospect of clinical success (26%) and lack of medical indication (23%). Other reasons given for two patients (6%) were the refusal of relatives and treatment by a neurologist. This question was not answered in four patients (13%).
In addition to therapy with antispastic drugs, treatment with botulinum neurotoxin A is also a therapy option that complies with guidelines, but experience has shown that it is not often used by general practitioners (Fig. 3). BoNT A has a better benefit-risk ratio, particularly in the case of focal spasticity, and should be given preference over the use of oral antispasmodics. In this survey, too, the majority of patients were not treated with botulinom neurotoxin A injections. 93 of the 97 patients (96%) received no treatment with botulinum neurotoxin A. In two cases (2%) this was used sporadically, in another two cases (2%) regularly. The most common reason for not receiving botulinum neurotoxin A treatment is a lack of nearby availability (47%)(Fig. 4).
Other causes include patient rejection (20%), a lack of medical indication (16%) and the health insurance company not covering the costs (5%). Other aspects mentioned (“Other”, 11%) are cases in which the neurologist did not recommend this treatment, an existing apallic syndrome, poor transportability of the patient, rejection by relatives and difficult compliance, which is often caused by a is caused by dementia (no information could be given for 11 patients (12%).)
Oral treatment with the antispastic drug baclofen is the most frequently used drug treatment option for this patient population in this survey. An intrathecal baclofen pump, on the other hand, is rarely used. 94 of the 97 patients (97%) were not treated with an intrathecal baclofen pump, only two patients (2%) received this treatment. For another patient, the treating doctor did not answer this question. This treatment alternative is rarely used in general medical care for patients from nursing facilities, but is only indicated for affected patients with widespread SMD (e.g. in tetraspasticity).
According to general practitioners, painkillers are used very frequently. 65% (63) of the patients needed pain medication due to their SMD, 34% (33) did not. In one case no information was provided. In 51% of patients who received painkillers, NSAIDs (ASA, COX-2 inhibitors, diclofenac, ibuprofen) were used. For 49% co-analgesics, for 44% pyrazolones and for 37% opioids. Acetanilides (paracetamol) were used in only one of the 63 patients treated with painkillers.
According to the therapy guidelines of various specialist societies, the medical care of patients with SMD should follow a multiprofessional and interdisciplinary treatment approach. In addition to primary care, it also makes sense to involve occupational and physical therapists and neurologists, as well as other specialist groups if necessary. Therefore, additional questions about collaboration with other disciplines were included in this survey.
67 of the 97 patients (69%) were referred to another specialist by the attending general practitioner, 29 (30%) were not (Fig. 5). This question was not answered for one patient. If a referral was made (in 67 patients), the majority was referred to a doctor in the neurology department (61 patients, 93%) (Fig. 6).
Other contact points were the areas of orthopedics (16%), urology (13%) and rehabilitation (4%). The treating general practitioners mainly gave both specialized treatment of spasticity (51%) and specialized treatment of the underlying disease (64%) as reasons for referral to a specialist. Other reasons included the patient's wishes (16%), pain therapy (22%) and rehabilitation (7%).
discussion
The survey of general practitioners about the care of their patients with spastic movement disorders who are housed in an inpatient care facility shows clear discrepancies with the desired guideline-based care [12]. This recommends multiprofessional and interdisciplinary physiotherapy and exercise therapy care, which should be expanded, if necessary, to the use of oral antispastic drugs, BoNT A, intrathecal baclofen treatment and surgical interventions. Care should also offer improved pain therapies, solutions to facilitate or completely prevent care and preventive measures against the development of comorbidities. In principle, suitable therapy must always be adapted to the individual. Regular physical or occupational therapy is the basis for successful therapy as it rehabilitates active motor functions and puts them in the foreground. Consistency is one of the most important parameters, as spasticity is an irreversible syndrome. The DGN guidelines for the treatment of spastic syndrome from 2008 contain an explicit recommendation for regular physiotherapy. This should be done twice a week for 30-45 minutes[21]. Long-term therapies should be followed by a 4-6 week phase of individual exercise treatments after 3 months of treatment. These explicit intervals can no longer be found in the current DGN guidelines [12], as each therapy must be individually adapted. However, these intervals can serve as a comparative value in order to be able to assess the adequate care of patients.
In this study, 65 percent of patients were prescribed a physiotherapy session 24 times or fewer in the second half of 2019. 25 percent of patients only received 12 or fewer sessions. Calculated over the year (52 weeks), in the best-case scenario this would correspond to 48 sessions. The majority of patients (65%) receive less than one physiotherapy session per week. Compared to the recommended number of regular sessions, this evaluated quantity of physiotherapy sessions represents a significant undersupply for patients.
It can be assumed that the discrepancy will be even more extreme for many patients, since the best possible case (24 sessions) was taken as the comparison value. An even more drastic undersupply is suspected for 25% patients, as they receive a maximum of 24 physiotherapy sessions per year, i.e. a little less than one session every 2 weeks. This seems to be particularly problematic for patients in inpatient care facilities, as only 30% of the patients' inpatient facilities have special exercise or therapy options. A mandatory offer of exercise opportunities in inpatient nursing homes would be an approach to improve the care of patients with SMD in inpatient care facilities. Concepts for the efficient implementation of physiotherapy sessions using digital offerings could improve patient adherence and only marginally increase the workload of physiotherapists. More intensive and constant care for patients with SMD is an essential part of successful therapy and should be started immediately in order to prevent irreversibility in the course of the disease and to constantly maintain the patient's quality of life.
In addition, BoNT A treatment was carried out in only 2% of the patients despite referral to a specialist in neurology. Particularly in the case of focal and multifocal spasticity as well as unilateral/bilateral manifestations in the arm or leg, treatment with BoNT A should be the first choice of therapy in addition to non-drug therapy. 82% of the evaluated patients have one of the spasticities mentioned and would therefore be predestined for non-drug therapy in combination with BoNT A. Drug injection treatment with BoNT A has a significantly better benefit-risk ratio and is therefore preferable to the use of oral antispastic drugs preferable [12]. In practice, the use of BoNT A is still rare. This indicates a widespread misprovision (an additional certificate “Qualified botulinum toxin therapy” is required by the professional society for the treatment), since even if there is a referral to a neurologist, the care of users of BoNT A or intrathecal baclofen pumps must be guaranteed. A billing number at the EBM and GOÄ for treatment with BoNT A could eliminate these uncertainties and additional work on the part of the doctors and thus improve the care situation in the long term. One could orientate oneself to the KV area Bavaria, which introduced a billing option for neurologists and neurologists for all health insurance companies on April 1st, 2018 for botulinum toxin treatment. A fundamental improvement in patient care is therefore accompanied by the simplification of cost absorption and billing and the expansion of multi-professional care, especially in rural areas.
In direct comparison to the 2018 study by Potempa et al. [14], which evaluated the average information provided by general practitioners regarding the care of their patients with spastic movement disorders, this study also shows incorrect care.
In contrast to Potempa et al. dedicated patient data was collected in this study, which is why the total population is smaller in comparison. In the context of the level of care, it can be seen that the inpatients have a greater weighting in the higher care levels 3-5 (66%), whereas the patients in the 2018 survey were mainly assigned to the care levels 2-4 (66%). The SMD patients who are housed in inpatient care facilities were prescribed physiotherapy less frequently over the quarter. A potential reason may be the higher average age, the higher level of care or the resulting restricted freedom of movement of the patients. Both Potempa et al. as well as this study shows that depression and/or contracture are the most common comorbidities of spastic movement disorders. The use of antispastic medication was somewhat more common in patients in inpatient nursing homes (63%) than in comparison to the information given by the doctors in 2018 (49%). Despite a high proportion of specialist referrals, only 9% patients received BoNT-A treatment in 2018 and the non-existent availability was given as the dominant cause.
This non-interventional study confirms the results of several studies that have shown inadequate and under-care of patients with SMD in Germany and expands the scope of consideration to patients with SMD in inpatient care facilities. It was not possible to demonstrate fundamentally poorer care for patients with SMD who are housed in inpatient care facilities compared to patients with SMD. There were only clear differences in isolated points such as the prescription of physiotherapy. Guideline-based care is being slowed down due to structural problems. Clear regulations and simplifications in the billing and reimbursement of costs for treatments that are recommended in accordance with the guidelines [12] could motivate doctors across the board to further adapt to guideline-compliant care. Professional associations and specialist societies should address the care situation of SMD patients and promote binding, interdisciplinary care adjustments and structural simplifications in order to ensure long-term and sustainable care for patients with SMD in inpatient care facilities. <<