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Published online on 21 August 2012 J Telemed Telecare, doi: 10.1258/jtt.2012.120105
Q Evaluation of a telemedical care programme Frank Marzinzik, Michael Wahl, Christoph M Doletschek,Constanze Jugel, Charlotte Rewitzer and Fabian Klostermann Department of Neurology, Charite´ - University Medicine Berlin, Germany SummaryWe reviewed a telemedicine-based care model for drug optimization in Parkinson’s disease. In this model patients sendvideo recordings made in the home to the treating team via the Internet. These serve as the basis for making therapeuticdecisions, in particular drug adjustments. Data from 78 patients were analysed with respect to outcome, methodacceptance and management of the procedure. During the 30-day telemedicine programme, the patients recorded anaverage of 3.2 videos per day. The patients’ motor score on the Unified Parkinson’s Disease Rating Scale (UPDRS) was31 points at enrolment and three months after ICP termination it was significantly lower at 24 points (P , 0.01), i.e. therewas less impairment. The patients rated their condition better at the end than at the beginning of the programme: ona 6-point scale, the mean rating at the beginning was 3.2 and the mean rating at the end was 2.8 (P , 0.001). A blindedinvestigator rated the patients’ videos on the same scale: at the beginning the mean score was 3.0 and at the end itwas 2.8 (P , 0.05). The information from the questionnaire showed overall acceptance and practicability of the method.
Both patients’ and neurologists’ use of the method was high. The method seems to be feasible for therapy optimizationin Parkinson’s disease, and of particular interest for patients with complex conditions who do not necessarily have toundergo hospital treatment.
In the integrated care programme for Parkinson’s disease(ICP), outpatient neurologists work together with hospital Parkinson’s disease (PD) is characterized by the chronic experts in the evaluation and treatment of PD patients on progression of various, individually composed motor and the basis of standardized videos. The recordings are made non-motor deficits.1 Problems in PD often arise from the with a camera installed in the patient’s home to capture drug therapy for the movement disorder. During the early distinct motor states at several times per day. This provides a stages, the regular intake of dopaminergic medication representative picture of individual motor profiles. The provides good control of motor symptoms and severe video recordings are automatically sent to the treating team therapeutic complications are uncommon. However, via the Internet and serve as the basis for making 5 –10 years after the start of treatment, drug responsiveness therapeutic decisions, in particular drug adjustments.
usually wears off and about 30% of PD patients develop Patients are admitted to the ICP by their treating diurnal fluctuations with increasing hypokinetic and/or neurologists if they experience fluctuations despite regular dyskinetic phases. This leads to increased hospital drug updates and against the background of a previously stable motor condition. Patients visit the regional clinic for It is likely that fewer PD patients would require inpatient ICP where an expert in movement disorders confirms the treatment if modern communication devices could be used diagnosis of PD and rates it using the Unified Parkinson’s in making the necessary therapeutic changes.2,3 In this Disease Rating Scale (UPDRS), Hoehn & Yahr and context, a telemedicine-based integrated care programme neuropsychological scores (for details see Table 1). Patients for patients with Parkinson’s disease is of interest. The are taught how to start video sequences and to respond to programme is reimbursed by a number of public health the instructions, delivered via a voice system during each After being admitted to the ICP, a commercial system provider (MVB – Medizinische Videobeobachtung GmbH) Correspondence: Fabian Klostermann, Department of Neurology, Charite´ - installs the necessary equipment in the patient’s home. This University Medicine Berlin, Campus Benjamin Franklin, 12200 Berlin, Germany(Fax: þ49 30 8445 4264; Email: ) comprises a camera on a tripod, adjusted to capture pictures Journal of Telemedicine and Telecare 2012: 1 – 6 Copyright 2012 by the Royal Society of Medicine Press
F Marzinzik et al. Telemedicine in Parkinson’s disease Table 1 Patient data. There were 34 women and 44 men server via a UMTS connection. From there, copies are sent tothe treating team, comprising the patient’s neurologist and hospital experts with an advisory role. They are equipped with software for viewing the videos, which allows the documentation of patient data and medication changes.
There are also dialogue functions for the exchange of messages between the hospital team and the neurologist, and between the neurologist and the patient, e.g. to discuss or explain medication changes. More details on the Note: the start LD dose indicates PD drugs, calculated as levodopa equivalence dose, at the methodology have been published elsewhere.4 beginning of ICP; the end LD dose indicates PD drugs, calculated as levodopa equivalencedose, at the end of ICP For the 30 days after equipment installation, the neurologist mainly works with the video sequences which of the patient walking, a suitable light, loudspeakers for the patients are asked to record at three scheduled times per voice instructions to guide the patient through the day, normally in the morning, early afternoon and evening recording, a PC, a printer and a transponder with reader, see (the patients are free to provide additional recordings at any other time). The neurologist has to confirm that the videos The patients start each 2-min video sequence by moving have been reviewed, so that the frequency of inspections the transponder over the reader. The videos are uniformly can be traced in the system. In addition, any changes of structured according to voice announcements about the medication are stored. The minimum communication from performance of different motor activities in front of the the treating neurologist to the patient is a daily printout of camera (including finger tapping, diadochokinesis, leg his/her medication plan, be it modified or not.
agility, rising from chair, postural stability, walking). The At the end of each recording, patients are asked recordings are stored on the local PC as compressed files to evaluate their motor state with a mark from 1 to 6 (x-Vid-Codec for MPEG videos) and then transferred to a (1 ¼ excellent/best to 6 ¼ unacceptable/worst). After thisself-evaluation, the patients report their general conditionand complaints, e.g. non-motor aspects of the disease. Thetreating neurologist makes therapeutic decisions on thebasis of the motor condition, as documented in the videosand the self-evaluation. Continuous drug adjustments takethe individual history of treated symptoms and mentionedcomplaints into account.
Theoretically, the ICP has advantages, such as therapy involving a team of outpatient and hospital experts,assessment of motor fluctuations based on multiple videosequences or close patient feedback. However, the practicaluse of ICP remains to be settled. We have thereforeexamined the feasibility and efficacy of the new procedure.
A retrospective analysis was performed for 78 consecutivepatients (mean age 67 years SD 8; 44 male, 34 female) whowere routinely included into ICP at the Charite´ from 2008to 2010. The participants were long-term PD patients (9.7years disease duration, SD 0.6), insured by some of themajor health insurance companies. All patients gaveinformed consent to the analysis and anonymouspublication of their data. The study did not require ethicspermission.
In addition to the routine ICP activities, the following additions were made. Three months after ICP termination, asecond visit to the Charite´ was used to reassess the clinicaland neuropsychological scores and to let the patientsevaluate their own videos (see below). A questionnaire Figure 1 The PC, transponder unit, camera, printer andloudspeakers concerning the acceptance and manageability of ICP was F Marzinzik et al. Telemedicine in Parkinson’s disease also sent to all patients. This questionnaire contained 14 Table 2 Video recording frequencies by the patients in ICP Further analyses were conducted on how frequently the neurologists and their patients made use of the telemedicine system. With respect to the patients, the number of individual videos and the daily/nightly hours at which they were recorded were assessed. Concerning the treating neurologists, it was determined how many timesduring the 30 days of ICP they reviewed video sequencesand performed medication changes per patient, as to changes of dopaminergic medication (calculated as The self-evaluation of the motor state was systematically assessed at the beginning and at the end of ICP, based onvideos recorded (1) between day 2 and 4, and (2) between day 27 and 29 of the programme. The first three complete videos, recorded during morning, afternoon and evening,were selected. For statistical comparisons (see below), the All of the 78 consecutively enrolled patients terminated ICP mean rating values belonging to the three videos per regularly. During the 30 days of the procedure the PD interval were taken to avoid multiple comparisons per medication was mostly increased, i.e. the participants subject and to study daily average states. The three videos started with dopaminergic drugs, equivalent to 792 mg (SD should be recorded in one day, ideally at day 2 and, 485) levodopa per day, and terminated ICP with 898 mg (SD respectively, 27. If, for example in case of poor compliance, 508) (P , 0.01; Wilcoxon signed-rank test). The neurologists patients did not record the three standard videos during the reviewed the videos 13.1 times (SD 4.7) and made 5 first day per interval, but during one of the following days, medication changes (SD 2.9) over the 30 days of ICP.
the earliest available morning, afternoon and evening The patients recorded 3.2 SD 0.8 videos per day (amounting recordings were selected per interval.
to an average of 97.1 videos per patient), close to the For comparison with the self evaluation, the selected 468 required three recordings per day. This recording frequency videos (6 videos per patient for 78 patients) were further was almost unchanged over the thirty days of ICP rated by a blinded expert from the Movement Disorders (mean video frequency per day in the 1st/2nd/3rd ten-day Section of the Neurological Department of the Charite´ who period: 3.3/3.1/3.2). The daily video recording frequencies was instructed to use the global scoring system of the are summarized in Table 2. The timing of the video patients. This investigator was not involved in any of the treatments and exclusively evaluated the muted sequences All but one patient returned the questionnaires. The data of the motor section of each recording to avoid any indicated overall acceptance and manageability of ICP. For reference to the patients’ self-evaluation. To rule out bias example, 92% noted that they were (rather) content with due to personal attitudes towards ICP, the videos were the treatment, 77% stated that they would repeat the presented in randomized order so that it was impossible to treatment programme and 81% felt that they could convey know when during ICP recordings were made. Further, on their symptoms better than in a hospital visit. Ninety-one the occasion of the visit three months after ICP, all patients percent stated that they could handle the home camera viewed and evaluated their own videos (the muted system on their own. The questions and responses are sequences, selected and ordered as for the blinded investigator). In a debriefing after this procedure, the The patients’ UPDRS motor score at the enrolment visit patients generally denied noticing when during ICP single was 31.2 points (SD 8.9) and three months after ICP termination it was 24.0 points (SD 9.5); lower scores The results from the questionnaire were analysed indicate less impairment. The difference was significant descriptively. Statistical comparisons between the UPDRS (P , 0.01; Wilcoxon signed-rank test).
pre vs. post ICP and between the ratings at the beginning vs.
During ICP, the patients rated their condition better at the end of ICP were run with the Wilcoxon signed-rank test.
end than at the beginning of the programme (global scale Spearman’s rank correlation was calculated between the from 1 ¼ best to 6 ¼ worst): the mean ratings were 3.2 changes of scores (self vs. external) and effects were referred (SD 0.8) vs. 2.8 (SD 0.8), P , 0.001. When viewing their own Table 3 Diurnal distribution of the video recordings. The values indicate the average number of recordings per subject over the 30 days of the ICP,calculated for all 78 patients in the specified intervals per day F Marzinzik et al. Telemedicine in Parkinson’s disease Table 4 Frequencies of responses (%) as provided in questionnaires by 77 patients 1 Could you start the camera on your own? 2 Did you need assistance for any of the procedures? 3 Were your complaints captured better than in a hospital stay for PD? 4 Were your complaints captured better than in an ordinary outpatient visit? 6 Would you recommend the therapy to other PD patients? 9 Did the therapy disturb daily routines? 13 Could you explain your symptoms to your doctor? 14 Are you content with the therapeutic steps taken during the procedure? videos three months after ICP, the patients also evaluated The significance of the rated improvements was due to themselves better in the videos from the end than from the relatively large changes in patients who had benefited from beginning of ICP (rating at beginning vs. end: 3.4 SD 0.8 vs.
ICP (‘responders’) as opposed to similarly moderate changes 3.1 SD 0.7, P , 0.05). This was also true of the blinded in patients with negative outcome ratings or no change investigator (rating at beginning vs. end: 3.0 SD 0.7 vs. 2.8 (‘non-responders’), both according to the patients and SD 0.7, P , 0.05). Although on average being highest for the according to the external investigator. Non-responders were patients during ICP, the rated change of initial vs. end approximately as frequent as responders with 38/51/50% ICP condition did not significantly differ, whether non-responders (unchanged: 17/18/18%, worsened: 21/33/ performed by the blinded investigator or by the patients, be 32%) and 62 /49 /50% responders due to the patients in/ it during or after the programme. Furthermore, the change after ICP/the blinded investigator. The distribution of rated by the patients during ICP was moderately correlated rated changes of initial versus end ICP conditions is with the respective changes, as rated by the patients shown in Figure 4 separately for non-responders and after ICP (r ¼ 0.5, P , 0.01) and by the blinded investigator (r ¼ 0.6, P , 0.01; Figure 2). The distribution of the ratings Differences between responders and non-responders from the beginning versus the end of the programme is appeared to prevail with respect to baseline medication and shown in Figure 3 for the patients during/after ICP and for medication change throughout ICP. According to the Figure 3 Self-ratings by the patients during and after ICP, and theratings by the blinded investigator (external) on a scale from1 (best) to 6 (worst). The ratings were made from three recordings Figure 2 Changes in the self-rated patient scores (abscissa) and the at an early and a late ICP phase. (Early interval ¼ day 2 –4; late scores of the blinded investigator (ordinate). The ratings were made interval ¼ day 27 –29). In the box plots, the boundary of the box from three recordings at an early and a late ICP phase. (Early closest to zero indicates the 25th percentile, a line within the interval ¼ day 2– 4; late interval ¼ day 27– 29). Thus negative values box marks the median, and the boundary of the box farthest from indicate worsening and positive values indicate improvement zero indicates the 75th percentile. The whiskers (error bars) above throughout the programme. These values were weakly correlated and below the box indicate the 90th and 10th percentiles F Marzinzik et al. Telemedicine in Parkinson’s disease identified with respect to parameters indicating the use ofthe system, i.e. patients belonging to either group recordeda similar number of videos and were reviewed and,respectively, drug-adjusted with similar frequencies by theirneurologists.
Although it was a new treatment modality for the patients,ICP was well accepted and the procedure was mostly notconsidered as especially demanding. The patients’adherence to the recording schedule for the videos and Figure 4 Changes in the self-ratings by the patients during and after the neurologists’ usage of the system were generally high.
ICP, and the ratings by the blinded investigator (external) on a scale During ICP, patients evaluated their motor state better at from 1 (best) to 6 (worst). The changes are shown separately for the end than at the beginning of the programme. This patients who at the end of the programme were evaluated better improvement was in line with the assessment of the than at its beginning (i.e. ‘responders’, positive values) versus thosewho were unchanged or worse (i.e. ‘non-responders’, negative external investigator, and also with the follow-up ratings of values). Note that non-responders were almost as frequent as the patients who evaluated their own videos three months responders. Box plot attributes as for Figure 3 Advantages of telemedicine-based health care models patients after ICP/the blinded investigator, the difference of have been demonstrated in a number of medical contexts, the initial and end levodopa equivalence dose was only but similar data in the field of PD are scarce. In significant in the responder group (dose increases: 122 SD neurovascular medicine, remote telemedical expert support 262 mg/145 SD 231 mg, both P , 0.01), but not in has been shown to improve the outcome of stroke patients non-responders (dose increases: 80 SD 301 mg/56 SD in non-specialized community hospitals at similar cost.5 322 mg, P . 0.1). Further, the initial levodopa equivalence With respect to PD, travelling to remote expert units was dose was lower in the responders (673 SD 487 mg) than in reduced through the use of videoconferencing systems with the non-responders (930 SD 467 mg; P , 0.05) according to which disease-related dysfunctions were reliably the blinded investigator. The change of the levodopa assessed.2,3,6 –8 Furthermore, in a recent study with ten PD equivalence dose throughout ICP was very weakly patients under telemedical care, quality of life and motor correlated with the rating change of the external outcome measures were enhanced compared to a control investigator (r ¼ 0.25, P , 0.04, Figure 5). No significant differences between the groups (whether due to the patients The value of telemedicine as an element of routine care in in and after ICP or to the blinded investigator) were PD has not been investigated previously. Most motorsymptoms of PD are visually discernible, so that videorecordings can provide relevant and retrievable informationfor treatment decisions. Once fluctuations have occurred, aconsistent schedule of recordings can convey the dynamicsof motor instability as an essential requirement of rationaldrug adaptations. Other than in regular outpatient settingsin which patients are normally seen at intervals of a fewmonths, evaluations in ICP are so frequent that functionalchanges per day can be quantified, and control of thepatients’ participation is easier than by use of alternativetechniques such as symptom diaries.10 In the present case, the neurologists surveyed the videos for each patient on average 13 times per month. Thus, givennormal intervals of 2 –3 days between single review dates,6 –9 videos were available for any interim analysis of apatient, who mostly complied with the ICP default of threerecordings per day. In this regard, ICP combines a number Figure 5 Changes in the evaluation scores from beginning to end of of advantages of hospital treatment, such as frequent the programme of the blinded investigator (abscissa) and the medical assessments and close patient feedback, with corresponding changes in the levodopa (LD) equivalence dose features of outpatient care, e.g. continuity of personal (ordinate) from the beginning compared to the end of theprogramme. These values were weakly correlated treatment in a normal environment. Furthermore, F Marzinzik et al. Telemedicine in Parkinson’s disease treatment decisions can also refer to patient information, extended, but less frequent monitoring, thus broadening recorded at times during which regular expert monitoring is the repertoire of ICP-treatable conditions and, possibly, unavailable under normal hospital or ambulant conditions.
closing the gaps between classical in- and outpatient care. It In the present study, patients who profited from the is regrettable that most public insurers require an a-priori method appeared to differ from non-responders in terms of superiority or non-inferiority proof of ICP compared to PD the augmentation of PD medication during the programme.
hospital therapy (for which efficacy data are not available), Accordingly, one might ask if a better outcome was due to although ICP might avoid many ‘habitual’ hospital the fact of initially underdosed medication which could admissions, given a complementary use of this and have been adjusted in ambulant settings just as well.
However, this probably oversimplifies the complex In conclusion, the data from the present study are problems of PD drug treatment. Inclusion into ICP required encouraging for ICP. The method seems to be feasible for that the patient’s neurologist had noted a disproportionate therapy optimization in PD, and of particular interest for deterioration of a previously stable motor condition despite patients with complex conditions who do not necessarily regular drug updates. Of course, in this context it may be have to undergo hospital treatment. Future healthcare noted that cautious drug handling under outpatient studies might address which patients will profit most from conditions is comprehensible, given the numerous ICP and how efficient it is in comparison to inpatient neuropsychiatric and vegetative side effects of dopaminergic medication, particularly relevant in advancedpatients. But even if many physicians performed an inappropriately ‘sparing’ treatment (rather than aiming at made equal contributions to the work.
maximum symptom control), ICP would have correctedthis tendency, e.g. by extending the therapeutic team byhospital experts. Here, future studies might systematically analyse the patients’ neuropsychiatric condition, specificdrug effects, the adjustment of administration schedules 1 Poewe WH, Wenning GK. The natural history of Parkinson’s disease. Ann and even treatment attitudes of the neurologists to provide 2 Biglan KM, Voss TS, Deuel LM, et al. Telemedicine for the care of nursing potentially relevant data for healthcare research in the field home residents with Parkinson’s disease. Mov Disord 2009;24:1073 – 6 3 Hubble JP, Pahwa R, Michalek DK, Thomas C, Koller WC. Interactive With respect to the self and external evaluations, patients video conferencing: a means of providing interim care to Parkinson’sdisease patients. Mov Disord 1993;8:380 – 2 rated their improvement about twice as high as the blinded 4 Biemer M, Hampe JF. A mobile medical monitoring system: concept, investigator. This could reflect a placebo effect. On the other design and deployment. Proceedings of the International Conference on hand, the higher improvement could be due to subjectively 5 Audebert HJ, Schenkel J, Heuschmann PU, et al. Effects of the perceived changes undetectable in the muted video implementation of a telemedical stroke network: the Telemedic Pilot sequences for the post-ICP ratings, e.g. relying on off-pain Project for Integrative Stroke Care (TEMPiS) in Bavaria, Germany. Lancet relief or benefit from antidepressive treatment.11,12 This 6 Hoffmann T, Russell T, Thompson L, Vincent A, Nelson M. Using the might also explain why the patients’ overall appraisal of the Internet to assess activities of daily living and hand function in people value from ICP, as provided in the questionnaire, appeared with Parkinson’s disease. NeuroRehabilitation 2008;23:253 – 61 relatively high compared to the postprocedural rating of 7 Samii A, Ryan-Dykes P, Tsukuda RA, Zink C, Franks R, Nichol WP.
Telemedicine for delivery of health care in Parkinson’s disease. J Telemed motor benefit. Finally, the results from the UPDRS assessments before versus three months after ICP seem to 8 Adam OR, Ferrara JM, Aguilar Tabora LG, Nashatizadeh MM, Negoita M, point to a sustained motor improvement after ICP, but these Jankovic J. Education research: patient telephone calls in a movementdisorders center: lessons in physician-trainee education. Neurology data were mainly from a neurologist who belonged to the hospital ICP team and may have been biased.
9 Dorsey ER, Deuel LM, Voss TS, et al. Increasing access to specialty care: a Weaknesses of ICP include the limitation of the pilot, randomized controlled trial of telemedicine for Parkinson’s disease.
Mov Disord 2010;25:1652 – 9 programme to 30 days and the emphasis on the treatment 10 Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient of PD motor symptoms. For example, diagnosis and non-compliance with paper diaries. BMJ 2002;324:1193 – 4 treatment of common neuropsychiatric problems in PD 11 Tolosa E, Compta Y. Dystonia in Parkinson’s disease. J Neurol could be realised, if the 30 monitoring days were used at 12 Schrag A. Quality of life and depression in Parkinson’s disease. J Neurol Sci individualised intervals. Such flexibility would allow


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