The care situation for patients with spastic movement disorder in Germany: a comparison (II)

According to estimates, around 260,000 people in Germany are affected by a stroke every year [1]. Numerous underlying diseases can result in the spastic syndrome (SMD; synonymous use: spastic movement disorder, spasticity, spasticity). The manifestation of the spastic syndrome is possible at different times in the course of the respective underlying disease [2,3]. In addition to multiple sclerosis, a craniocerebral trauma, a spinal cord lesion or cerebral palsy, stroke is one of the most common and causative underlying diseases [4]. Stroke survivors have almost a 50% chance of developing spasticity one to three months later [5,6]. Spastic movement disorders are damage to the central nervous system and the central nervous sensorimotor cell and pathway systems (“spastic movement disorder”, SMD). The disease is characterized by a massive limitation of joint mobility and therefore overall mobility, as well as involuntary activation of muscles [7]. In Germany, 250,000 people are probably affected and suffer from the disease and the associated reductions in quality of life [8].

>> Accordingly, depending on the individual case, there may be varying degrees of severity. Impaired mobility and self-care, difficulties with physical hygiene and self-care, reduced self-esteem, pain, mood swings and depression are examples of noticeable consequences for patients with spastic movement disorders [9, 10, 11, 12]. The impairments and comorbidities are an additional burden not only for the patients, but also for relatives and nursing staff [10,13]. In addition, caring for patients with SMD after a stroke results in four times higher costs for the healthcare system in the first year alone [14].
There are a variety of therapy options for the treatment of SMD, which, in the best possible case, are used in the context of a multi-professional and interdisciplinary care concept in accordance with the guidelines in order to ensure the best possible care for patients. The therapy recommendations of the guidelines for the therapy of the spastic syndrome of the German Society of Neurology (DGN) include preventive, non-drug measures, oral antispastics, botulinum neurotoxin A (BoNT A), intrathecal baclofen pump as well as plastic or orthopedic operations [15]. The use of various therapeutic measures is recommended in a phased and supervised manner so that it can be tailored to the patient's specific disease and the affected body areas. The first-line therapy with physiotherapy and BoNT A [16,17] recommended by the professional society DGN has a better benefit-risk ratio, especially in the case of focal spasticity and diseases in which only certain parts of the patient’s body are affected should accordingly be used prior to the use of oral antispasmodics, which can have a variety of unpleasant side effects for the patient.
methodology
Various recent publications have dealt with the reality of care for patients with spastic movement disorders in Germany and revealed care that does not comply with the updated recommendations of the DGN guidelines [13,16,18,19]. Rather, a clear lack of adequate medical and therapeutic care was demonstrated. Unfortunately, there is currently hardly any study data on the care situation for patients with spastic movement disorder in Germany.
It is therefore reasonable to assume that the quality of life of patients as well as their medical care suffers due to permanent inadequate and inadequate care in Germany and that this results in a significantly increased amount of care. Three different publications from the last few years, which have dealt with different areas of care for patients with spastic syndrome in Germany, should therefore be compared and channeled in order to be able to present the reality of care more clearly. The three publications are the aSPEkt study from 2017 (Katzenmeyer et al.), a questionnaire analysis of patients with spastic movement disorder in Germany from 2019 (Potempa et al.) and a questionnaire analysis from patient: inside with spastic syndrome in inpatient care facilities in Germany from 2021 (Völkel et al.).
Results
The publications to be compared are briefly and focusedly recapitulated at the beginning. Building on this, the results are presented in the context of the care situation and the therapeutic measures used.
The aSPEkt study from 2017 conducted a nationwide survey in 10 different nursing services using a standardized questionnaire [13]. Nursing staff from 6 different federal states assessed the quality of life, medical care and the nursing effort of outpatients with spastic syndrome in Germany. The data collection period took place in 2016. Guideline-compliant treatment was only used in 25% of the cases (the recommended first-line therapy was only used in 10%), which, in addition to a reduced quality of life for the patients, also resulted in an increased care effort and higher costs for the health system as a whole.
Potempa et al. examined the care situation for patients with spastic movement disorder in Germany in 2019 [18]. 109 randomly selected general practitioners were evaluated, who provided collective information on 2,418 patients. The questionnaire used provided data on patient demographics, the disease status of patients with SMD, non-invasive treatment methods, drug therapy and interdisciplinary and multi-professional collaboration. It was shown that there are clear signs of under- or incorrect care in the reality of care for patients with spastic movement disorders after a stroke in Germany and that there is therefore a large discrepancy between the recommended guideline-based care of the DGN and the reality of care.
These two publications are intended to be consistent with the results of the publication by Völkel et al. from 2021, which includes the survey by Potempa et al. to include patients with spastic movement disorders in inpatient care facilities. The publication is currently in a review process and is expected to be published in the first quarter of 2022 [19]. The data was collected retrospectively for 2019 so that a constant error in care due to the corona pandemic could be ruled out. Data from a total of 24 general practitioners provided evaluable patient questionnaires from a total of 97 patients with SMD.
In contrast to the publication by Potempa et al. were reported by Völkel et al. individual patient questionnaires and no collective data were evaluated. Katzenmeyer et al. In contrast, his survey focused on the experience and effort of nursing staff regarding the patients they care for. The majority of patients with spastic movement disorders were found in Potempa et al. between 30-65 (42%) years old or older than 65 (51%) years. The patients in the survey by Völkel et al. who suffer from spastic movement disorders and are housed in inpatient care facilities have an average age of ~70 years.
In the context of the level of care, it can be seen that the inpatients accommodated have a greater weighting in the higher levels of care 3-5 (66%), whereas the patients of the survey by Potempa et al. were mainly assigned to care levels 2-4 (66%) (error: reference not found). In the aSPEkt study, the nursing staff assumed a time commitment of 3 hours per day (for care level 2 or 3), which should be carried out in three nursing units of 60 minutes each. In this context, the additional care effort for patients with SMD was rated at 15 minutes per care unit performed by the nursing staff, which corresponds to an additional burden of 3 x 15 minutes per day and patient.
In 2018 (Potempa et al.), general practitioners reported that their patients were mainly prescribed physiotherapy, which took place at 90% with 12-24 sessions per quarter. Physiotherapy was prescribed to patients in inpatient care facilities in the second half of 2019 (Völkel et al.) for 86% (error: reference not found). Calculated per quarter, only 25% of patients received 12-24 sessions, the remaining 75% of patients had fewer sessions per quarter. One potential reason could be the restricted freedom of movement of patients in inpatient care facilities. Likewise, only 30% of patients in inpatient care facilities had a special exercise or therapy offer on site.
In 2019, patients in inpatient care facilities had depression in 49% cases and a contracture as a concomitant illness in 47% cases. The general practitioners also stated in 2018 that 45% of patients had developed depression.
The use of antispastic medications was slightly more common among patients in inpatient nursing homes (63%) than compared to the information provided by doctors in 2018 (49%). The majority of medications used were identical to baclofen, gabapentin, tolperisone and L-DOPA (error: reference not found). However, the percentage distributions differed significantly in some cases, which may be due, among other things, to the possibility of multiple responses.
The aSPekt study (Katzenmeyer et al.) showed that 10% of the patients treated received first-line therapy that included BoNT A. According to the patient surveys, only very small proportions of patients (2018: 9%, 2019: 4%) received BoNT A. A “non-existent availability” was the dominant cause of this undersupply (2018: 43%, 2019: 47%). The refusal of this therapeutic measure by the patient (2018: 18%, 2019: 20%) and no existing medical indication (2018: 19%, 2019: 16%) were further reasons against the use of botulinum neurotoxin A in both years. The similar distribution Both surveys are shown in Table 1.
While in 2018 “no clinical success” for 15% patients was a reason not to use BoNT A, there was not a single case in the 2019 survey. In addition, compared to 2018, the proportion of rejections due to no or only limited cost coverage by the health insurance company fell from 17% to 5% (Fig. 3).
Painkillers were prescribed to the patients due to the spastic movement disorder in 50% of cases (2018) and in 63% of patients in inpatient care facilities (error: reference not found). This corresponds to the results of the aSPekt study, in which the nursing staff stated that in the case of 85% the patients cared for, pain is one of the greatest secondary problems of the insufficiently treated spastic syndrome. The distribution of the most frequently used painkillers was similar in both 2018 and 2019.
Of the doctors surveyed in 2018, 62% stated that they had referred their patients to a specialist. A referral to a specialist was made for 69% of the evaluated patients who are housed in an inpatient care facility. Of these, 93% were referred to a neurologist (Table 2).
The main reason for the referral to a specialist was a specialized treatment of the underlying disease (2019: 64%; 2018: 69%) or a specialized treatment of the spasticity (2019: 51%; 2018: 56%) and partly due to the possibilities of pain therapy (22%) . Table 2 shows an example of the numerical comparison of both surveys. The number of evaluated data (n) is higher for 2018. Nevertheless, the proportional probabilities for the first two points of the reasons for a specialist referral are almost identical. The 2018 population shows a significantly higher proportion of patients who were referred to a specialist because of their own wish or for rehabilitation. In the 2019 survey, pain therapy was the decisive factor for a referral in 22% cases.
The three publications show a lot of overlap with regard to the surveys of nursing staff, general practitioners and patients in the respective context of SMD sufferers. In addition to age and level of care, demographic data and the patient's clinical picture, the reality of care in Germany and the causes of incorrect or. Undersupply of patients with SMD gained overlapping findings.
discussion

To assess the reality of care for patients with SMD in Germany, three different publications were compared. It should be noted that the publications, whose data each come from different years (2016, 2018, 2019), consistently show a large discrepancy between the recommended guideline-based care and the actual reality of care in Germany. The surveys reflect different perspectives. In the aSPEkt study, the information provided by nursing staff who, among other things, cared for SMD patients was analyzed. Potempa et al. On the other hand, evaluated comprehensive collective data from general practitioners and their respective patient pools, whereas Völkel et al. evaluated individual patient data completed by general practitioners in inpatient care facilities.
Overall, it can be shown that the care of patients with SMD in Germany requires rapid and efficient adaptation. The guideline-based care according to the DGN is only applied to a limited extent [15]. An interdisciplinary and multi-professional physiotherapy and exercise therapy treatment is the basis of the recommended therapy measures. Since SMD is an irreversible syndrome, regular physical and occupational therapy is essential for the patient. The active motor functions are rehabilitated and focused on. Potempa et al. and Völkel et al. showed in their publications the frequency and frequency of physiotherapy in patients with SMD. Comparatively and with reference to the DGN guidelines from 2008, it was possible to show an undersupply of prescribed physiotherapy. This statement is supported by the nurses of the aSPekt study. They stated that they wanted a more targeted approach for the patients
would want spasticity medication and secondly demanded more physiotherapy for those affected. Characteristic of the nursing staff of SMD patients is the desire to adapt to the increased care requirements and the pain of the affected patients. The consequential problems of SMD are in particular hygiene problems, contractures, pain and basic physical impairments, which are the causes of the increased care effort. The additional care required is 15 minutes per care unit, which corresponds to an increase of 25%, assuming a care unit of 60 minutes (care level 2 & 3). A patient with care grade 3 (outpatient cash benefit, outpatient benefit in kind, outpatient relief amount (§45b SGB XI)) causes monthly costs of around 1,968 euros per month. The higher cost of care therefore also causes higher monthly costs of 492 euros per patient, which in turn generates additional annual costs of 5,904 euros per patient. A guideline-based treatment that reduces disease progression and comorbidities as best as possible can therefore be more cost-effective for the German healthcare system.
The non-medicinal physiotherapy and occupational therapy measures are the basis for successful treatment. Based on this, the use of BoNT A, oral antispastics, the intrathecal baclofen pump or plastic or orthopedic surgery should be considered, adapted to the specific course of the disease of each patient.
The recommended first-line therapy, which is a combination of physiotherapy and treatment with BoNT A, also shows a clear undersupply. These therapeutic measures are particularly recommended for patients with focal, multifocal SMD and unilateral/bilateral expression in the arm or leg. Although the patients in the surveys mostly apply to these clinical pictures, only very few were treated with BoNT A (9% or 4%). According to the aSPEkt study, guideline-compliant treatment of SMD patients only took place with 25%. The first-line therapy consisting of physiotherapy and BoNT A is only used with 10%. Instead, the majority of SMD patients were prescribed oral antispasmodics, which have a significantly poorer benefit-risk ratio than BoNT A due to their strong side effects [15].
A widespread lack or undersupply can be demonstrated across all three publications. An obstacle to treatment with BoNT A is the missing billing number at EBM and GOÄ. This could create uncertainties and additional
Eliminate bureaucratic effort on the part of doctors. The certificate requires, among other things, 100 documented treatments with BoNT A. The Bavarian health insurance area already implemented a billing number for neurologists and neurologists for treatment with botulinum toxin that is valid for all health insurance companies in 2018 (April 1, 2018). This approach can be used as an example to improve the care of patients with SMD nationwide and to prevent subsequent problems and comorbidities and thus higher costs for the social system. <<