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P121 Parkinson’s disease, progressive supranuclear palsy and cortico-basal degeneration-disorders with implications for palliative medicine
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Abstract / Basal Ganglia 1 (2011) 13–45
POSTER SESSION 1.5 Public health issues P120 Out-patient rehabilitation of patients with Parkinson Disease – An analysis of questionnaires to therapists U. Hoess, M. Winterholler, W. Schupp (Schwarzenbruck, Herzogenaurach) Objective: Demographic trend leads to a higher proportion of elderly people in our society and a corresponding rise in incidence of ageassociated diseases. Parkinson disease (PD) has an annual total cost of 6000–9600 € per patient (direct and indirect costs). The major portion of these costs are due to medication and hospital admissions. Costs for patient therapies were only 25, 46 € and thus of little influence [1]. The distribution of the costs does not correlate with the successful use of non-medication treatments. What possible improvements do the therapists, who are involved in today’s outpatient treatment, see for patients with PD? Method: Descriptive study using a questionnaire regarding this problem presented to 18 therapists (5 PT, 3 LT, 3 OT, 2 Psycho, 2 Massag, 3 Social worker) in the region of Nuremberg, including Review of the literature. Results: 17 therapists (8 working in hospitals, 9 in outpatient settings) recommended serious deficits in outpatient’s treatment practice. Improvement was thought to be important concerning the preservation of independence, avoidance of nursing home care, improvement of treatment close to home, continuation of treatment outside the hospital and involvement of the relatives. Patients held contact to medical specialists and therapists (100% each), self-help groups (67%), nursing services (56%) and friends (33%). Individual and group therapy was thought to be of equal value. Outpatient rehabilitation was recommended by all therapists. Discussion: All therapists saw a need for an improvement of the outpatient care of patients with PD. The principles of ‘‘rehab instead of care’’ and ‘‘rehabilitation in nursing home treatment’’ as well as ‘‘outpatient rather than inpatient’’ should receive more importance. Rehabilitation should be offered to Parkinson patients, even in rural areas. Group therapy and individual therapy are necessary for outpatients and are recommended on the basis of medical and not purely financial grounds. Group therapies prevent social withdrawal. The activities of self-help groups do not reach enough patients in rural areas yet, continuing education of therapists is mandatory. Perspectives: New multimodal outpatient treatment concepts are necessary, as well as simultaneous research on the measurable effect and efficiency of these concepts. References [1] Keller S, Kessler T, Meuser Th, Fogel W, Bremen D, Jost WH. Analysis of direct costs in therapy of Parkinson disease. Nervenarzt 2003;74(12):1105–9. doi:10.1016/j.baga.2011.01.040
P121 Parkinson’s disease, progressive supranuclear palsy and corticobasal degeneration-disorders with implications for palliative medicine M. Hensler, H. Welponer, S. Lorenzl (Munich) Context: Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are rare diseases with an estimated number of 4000 people affected in Germany. Patients with Parkinson’s disease (PD) have a higher number of people affected (approx. 100,000) but are rarely admitted to a palliative care unit. Therefore, we ana-
lyzed prospectively the admission of patients with PD, PSP and CBD to a palliative care unit. Design: Prospective evaluation of patients with PD, PSP and CBD admitted to our palliative care unit from May 2006 until August 2009. Results: Within these 2 years 26 patients with Parkinsonian disorders were admitted: 20 diagnosed with PSP, 3 with PD and 3 with CBD. The mean age was 72 ± 6 years (57–81 years). The duration of treatment varied between 1 and 21 days (10 ± 6 days). The most common reasons for admission were pain (n = 9), diarrhoea/obstipation (n = 7), swallowing difficulties (n = 5), sialorrhoea (n = 4), dyspnoea (n = 4), depression (n = 4), sweating (n = 3), myoclonic jerks (n = 3). Five patients died during the time spent at the palliative care unit. Conclusion: The number of PD patients admitted to a palliative care unit is lower as compared to PSP patients. This might be due to a more rapid disease progression in PSP and more palliative care needs throughout the disease. Reasons for admission and the time spent at the palliative care unit do not differ between patients with PD, PSP and CBD and patients with malignant diseases. The symptom control was very effective in these patients with the knowledge of the underlying disease. Therefore, we suggest that more patients with PD and atypical Parkinsonian disorders should be admitted to palliative care units in advanced stages of their diseases. doi:10.1016/j.baga.2011.01.041
P122 Efficacy of telemedical care for patients with Parkinson’s disease F. Marzinzik, M. Wahl, C. Jugel, C. Doletschek, F. Klostermann (Berlin) Introduction: The treatment of Parkinson’s disease (PD) must be regularly adjusted to the chronic progression of symptoms. Normally, such adaptations can be realized in outpatient settings, but conditions such as motor or non-motor fluctuations can require hospital treatment. Between in and outpatient environments, an integrated care model for Parkinson’s disease (ICP) is run in some German regions. During this one-month program, a team of neurologists assesses individual PD profiles and updates medication based on standardized videos, which patients record with a home-installed camera system several times per day. Here, first efficacy data on this telemedical ICP are presented. Methods: Motor self-ratings (1 = very good to 6 = insufficient) from the beginning and the end of ICP were analysed. Further, the muted movement sequences of the videos belonging to these ratings were evaluated by an external investigator using the same rating system. This investigator was unaware of personal and medical patient details and of when videos were recorded during ICP. Results: 486 video sequences from 78 patients were analyzed (enrolled in ICP over 11 months). Significant motor improvement under ICP was suggested both by self and external evaluations (rating at the beginning vs. end of ICP by patients: 3.2 ± 0.8 vs. 2.8 ± 0.8, p < .001; by investigator: 3.0 ± 0.7 vs. 2.8 ± 0.7, p < .03; Wilcoxon signed-rank tests). However, this positive effect was due to high motor improvements in about 55% of the patients, while some 45% did not profit from ICP. Conclusion: PD patients profited from video-based therapy and, thus, telemedical ICP appears a feasible concept in PD treatment. For optimal patient selection, further studies should focus on the identification of predictors for ICP success, considering a relatively high rate of non-responders. doi:10.1016/j.baga.2011.01.042
Abstract / Basal Ganglia 1 (2011) 13–45
POSTER SESSION 1.5 Public health issues P120 Out-patient rehabilitation of patients with Parkinson Disease – An analysis of questionnaires to therapists U. Hoess, M. Winterholler, W. Schupp (Schwarzenbruck, Herzogenaurach) Objective: Demographic trend leads to a higher proportion of elderly people in our society and a corresponding rise in incidence of ageassociated diseases. Parkinson disease (PD) has an annual total cost of 6000–9600 € per patient (direct and indirect costs). The major portion of these costs are due to medication and hospital admissions. Costs for patient therapies were only 25, 46 € and thus of little influence [1]. The distribution of the costs does not correlate with the successful use of non-medication treatments. What possible improvements do the therapists, who are involved in today’s outpatient treatment, see for patients with PD? Method: Descriptive study using a questionnaire regarding this problem presented to 18 therapists (5 PT, 3 LT, 3 OT, 2 Psycho, 2 Massag, 3 Social worker) in the region of Nuremberg, including Review of the literature. Results: 17 therapists (8 working in hospitals, 9 in outpatient settings) recommended serious deficits in outpatient’s treatment practice. Improvement was thought to be important concerning the preservation of independence, avoidance of nursing home care, improvement of treatment close to home, continuation of treatment outside the hospital and involvement of the relatives. Patients held contact to medical specialists and therapists (100% each), self-help groups (67%), nursing services (56%) and friends (33%). Individual and group therapy was thought to be of equal value. Outpatient rehabilitation was recommended by all therapists. Discussion: All therapists saw a need for an improvement of the outpatient care of patients with PD. The principles of ‘‘rehab instead of care’’ and ‘‘rehabilitation in nursing home treatment’’ as well as ‘‘outpatient rather than inpatient’’ should receive more importance. Rehabilitation should be offered to Parkinson patients, even in rural areas. Group therapy and individual therapy are necessary for outpatients and are recommended on the basis of medical and not purely financial grounds. Group therapies prevent social withdrawal. The activities of self-help groups do not reach enough patients in rural areas yet, continuing education of therapists is mandatory. Perspectives: New multimodal outpatient treatment concepts are necessary, as well as simultaneous research on the measurable effect and efficiency of these concepts. References [1] Keller S, Kessler T, Meuser Th, Fogel W, Bremen D, Jost WH. Analysis of direct costs in therapy of Parkinson disease. Nervenarzt 2003;74(12):1105–9. doi:10.1016/j.baga.2011.01.040
P121 Parkinson’s disease, progressive supranuclear palsy and corticobasal degeneration-disorders with implications for palliative medicine M. Hensler, H. Welponer, S. Lorenzl (Munich) Context: Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are rare diseases with an estimated number of 4000 people affected in Germany. Patients with Parkinson’s disease (PD) have a higher number of people affected (approx. 100,000) but are rarely admitted to a palliative care unit. Therefore, we ana-
lyzed prospectively the admission of patients with PD, PSP and CBD to a palliative care unit. Design: Prospective evaluation of patients with PD, PSP and CBD admitted to our palliative care unit from May 2006 until August 2009. Results: Within these 2 years 26 patients with Parkinsonian disorders were admitted: 20 diagnosed with PSP, 3 with PD and 3 with CBD. The mean age was 72 ± 6 years (57–81 years). The duration of treatment varied between 1 and 21 days (10 ± 6 days). The most common reasons for admission were pain (n = 9), diarrhoea/obstipation (n = 7), swallowing difficulties (n = 5), sialorrhoea (n = 4), dyspnoea (n = 4), depression (n = 4), sweating (n = 3), myoclonic jerks (n = 3). Five patients died during the time spent at the palliative care unit. Conclusion: The number of PD patients admitted to a palliative care unit is lower as compared to PSP patients. This might be due to a more rapid disease progression in PSP and more palliative care needs throughout the disease. Reasons for admission and the time spent at the palliative care unit do not differ between patients with PD, PSP and CBD and patients with malignant diseases. The symptom control was very effective in these patients with the knowledge of the underlying disease. Therefore, we suggest that more patients with PD and atypical Parkinsonian disorders should be admitted to palliative care units in advanced stages of their diseases. doi:10.1016/j.baga.2011.01.041
P122 Efficacy of telemedical care for patients with Parkinson’s disease F. Marzinzik, M. Wahl, C. Jugel, C. Doletschek, F. Klostermann (Berlin) Introduction: The treatment of Parkinson’s disease (PD) must be regularly adjusted to the chronic progression of symptoms. Normally, such adaptations can be realized in outpatient settings, but conditions such as motor or non-motor fluctuations can require hospital treatment. Between in and outpatient environments, an integrated care model for Parkinson’s disease (ICP) is run in some German regions. During this one-month program, a team of neurologists assesses individual PD profiles and updates medication based on standardized videos, which patients record with a home-installed camera system several times per day. Here, first efficacy data on this telemedical ICP are presented. Methods: Motor self-ratings (1 = very good to 6 = insufficient) from the beginning and the end of ICP were analysed. Further, the muted movement sequences of the videos belonging to these ratings were evaluated by an external investigator using the same rating system. This investigator was unaware of personal and medical patient details and of when videos were recorded during ICP. Results: 486 video sequences from 78 patients were analyzed (enrolled in ICP over 11 months). Significant motor improvement under ICP was suggested both by self and external evaluations (rating at the beginning vs. end of ICP by patients: 3.2 ± 0.8 vs. 2.8 ± 0.8, p < .001; by investigator: 3.0 ± 0.7 vs. 2.8 ± 0.7, p < .03; Wilcoxon signed-rank tests). However, this positive effect was due to high motor improvements in about 55% of the patients, while some 45% did not profit from ICP. Conclusion: PD patients profited from video-based therapy and, thus, telemedical ICP appears a feasible concept in PD treatment. For optimal patient selection, further studies should focus on the identification of predictors for ICP success, considering a relatively high rate of non-responders. doi:10.1016/j.baga.2011.01.042