Video telephony in the (sub) acute care of ALS patients. Author: Daniël Brummelman

Video telephony in the (sub) acute care of ALS patients Author: Daniël Brummelman Date: December 2007

Video telephony in the (sub)acute care for ALS patients

Video telephony in the (sub) acute care of ALS patients Author: Daniël Brummelman s0071609 Date: December 2007 Report nr: Bachelor thesis BMT028 BSS 07-40 Committee: Prof. H. Hermens Dr. V. Jones Dr. E. Janssen Dr. D. Stemerding

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Acknowledgements Working on this project has been a instructive experience on how to get from an idea to starting a pilot. It also showed me that a lot of groups are involved in such a project. It is wonderful that technology like this exists, but finding the right application is the key to successful implementation. I would like to thank all the participating groups for making this project possible: the members of the committee, the ALS team at Het Roessingh Rehabilitation Centre, the patients who participated, Rob Kleissen, Geert Schrijver, Vodafone, and anyone else who helped with this project. Daniël Brummelman

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Summary Introduction This report describes a study conducted with the team caring for ALS patients at Het Roessingh Rehabilitation Centre in Enschede, in The Netherlands. ALS is a progressive neurodegenerative disease for which there is no cure yet. The disease is very rare, it‟s incidence is only 1,5 to 2 cases per 100.000 citizens. Therefore patients who have ALS live far apart geographically. Since it‟s such a rare disease, very few care centers and physicians have expertise in the treatment for this disease. ALS causes patients to have severe muscle weakness and makes them very tired. This makes travelling a very taxing experience. Due to the progressive nature and unfamiliarity of the disease (average life expectancy is 3,5 years after the first symptoms) patients require intensive counseling and support. In the present situation at Het Roessingh the ALS patients can call the physician‟s mobile phone number 24 hours a day 7 days a week. Many of these calls are not sufficient to deal with the problem and are followed by a home-visit. Introducing a mobile telephone with the ability to see as well as hear each other (video telephone) could improve the quality of the contact and thus help reduce the number of unnecessary home visits. Goals The main goal of this research project is to investigate the use of innovative technology (video telephony over UMTS) in supporting contact between ALS patients and the ALS team. We investigate if this technology can help support, and improve the quality of, the health-care process. Methods The experiment was designed in the form of a controlled trial with six experimental patients using video phones and six control patients using regular mobile phones as in the current practice. The six patients who had a videophone could use it freely for four weeks. Before and after the four week trial period, questionnaires were given on the quality of life, status of ALS and on the use of the video phone as a means of communication with their physician. A second experiment was done which focused on the use of the video phones themselves and testing indoor coverage at various places in Enschede. These findings were compared to the Vodafone UMTS coverage map available on the Vodafone website. Results Because of unforeseen delays only the baseline questionnaires of four patients using video phones were available for analysis. From these results it was concluded that three of the four patients had a positive attitude towards using the video telephone as a means of communication with their physician and were willing to try it. A fourth patient had a negative attitude towards care via video telephony and decided to withdraw from the project shortly after the preliminary questionnaire was applied. The results of the experiment with UMTS phones and the UMTS network showed that the UMTS signal strength tended to fluctuate a lot and indoor coverage was a problem. UMTS signal strength would also vary according to the position in a building. This was especially noticeable in the Roessingh building where some places, including the physician‟s office, had no UMTS coverage. The experiment also gave practical experience in the use of the telephones and calling with video phone. Conclusion Overall the technology looks very promising. The UMTS phones are easy to use and making a video call is almost as easy as making a standard phone call. The patients are willing to try this technology in their care process. One of the preconditions for introducing this kind of service is that there is enough UMTS coverage to support use of the video function on the 4

Video telephony in the (sub)acute care for ALS patients phones. Lack of (indoor) coverage is one of the main limitations encountered. Recommendations are made for the follow up project by G. Schrijver who will carry out the full experiment.

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Table of contents Acknowledgements .................................................................................................................... 3 Summary .................................................................................................................................... 4 Table of contents ........................................................................................................................ 6 1. Introduction ........................................................................................................................ 7 1.1. Scope ........................................................................................................................... 7 1.2. What is ALS ................................................................................................................ 7 1.3. Problem Definition ...................................................................................................... 8 1.4. UMTS ........................................................................................................................ 10 1.5. Video Conferencing .................................................................................................. 12 1.6. Goals.......................................................................................................................... 13 1.7. Research question ...................................................................................................... 14 1.8. Course of the project ................................................................................................. 15 2. Materials and Methodology ............................................................................................. 17 2.1. Instrumentation.......................................................................................................... 17 2.2. The questionnaires..................................................................................................... 17 2.3. Comparison and coding schemes .............................................................................. 20 2.4. Methodology ............................................................................................................. 20 2.5. Enschede video telephony coverage test ................................................................... 22 3. Results .............................................................................................................................. 24 3.1. Experimental Group: Patient visits ........................................................................... 24 3.2. Preliminary results patient questionnaires................................................................. 25 3.3. Results of the Enschede video telephony coverage test ............................................ 29 4. Discussion and Conclusion .............................................................................................. 38 4.1. General conclusion .................................................................................................... 38 4.2. Recommendations ..................................................................................................... 39 4.3. Overall Conclusion .................................................................................................... 39 Reference: ................................................................................................................................ 41 Appendix .................................................................................................................................. 42 Appendix A Introduction letters .......................................................................................... 42 Appendix B. Phone information sheet ................................................................................. 45 Appendix C Detailed specification of the phones............................................................... 47 Appendix D. Walkthroughs (protocol) ................................................................................ 49 Appendix E. Log sheet for use by healthcare professional to log patient contacts.............. 51 Appendix F. Questionnaires................................................................................................. 53

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1. Introduction 1.1. Scope The University of Twente has been working with the Roessingh Rehabilitation centre on a number of different projects concerning Telehealth applications. Two projects have already been done with ALS patients. Both projects used a desktop based telehealth application.  Telehealth voor patiënten met ALS by E. Meijer in 2005.  Telecare voor patiënten met ALS by H. Zuidinga in 2006. The project Telehealth by E. Meijer introduced internet consulting hours for patients to consult with their physician and other healthcare workers. During these internet consulting hours the patient and physician could see each other via a webcam. Telecare by H. Zuidinga was a follow-up project for Telehealth. It used the same set-up as Telehealth but investigated the substitution of the webcam with a high quality camera. Now two new projects are being started on the use of remote care. This project: Video Telephony in the (sub) acute care of ALS patients by D. Brummelman, and “The use of video-telephony in the care process for ALS patients” by G. Schrijver. “Video Telephony in the (sub) acute care of ALS patients” is a bachelors assignment and it will be the feasibility study for the masters assignment by G. Schrijver. These two projects will use mobile phones with video telephony capability and will investigate what the impact is on the care process for ALS patients.

1.2. What is ALS Amyotrophic lateral sclerosis (ALS) is in the United States often referred to as “Lou Gehrig‟s disease” after a famous baseball player who died from the disease. ALS is a progressive neurodegenerative disease that affects motor nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. ALS only affects voluntary muscle movement, like the arms and legs, but also breathing. The heart and digestive system also have muscles but these are regulated involuntarily. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected. A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment, “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person‟s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.

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Figure 1: schematic presentation of the effect of ALS

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy. Limbs begin to look “thinner” due to muscle wasting. The progressive degeneration of the motor neurons in ALS eventually lead to death, often due to failure of the respiratory system. The average life expectancy of a patient with ALS is 3,5 years after the first symptoms appear. The progression of ALS is quite variable; no two people will experience the same evolution of the disease. There are medically documented cases of people in whom ALS „burns out‟, stops progressing or progresses at a very slow rate. But there is no cure yet. [1],[2] Every year between 200 – 350 people in the Netherlands are diagnosed with ALS. The total number of ALS patients in the Netherlands is estimated to be between the 1000 and 1500 cases. Every year around 300 to 400 people die because of the effects of ALS. The disease is detected at various ages but in 90 % of cases symptoms appear between the ages of 40 – 60 years. [3] The treatment of a patient with ALS is primarily a symptomatic treatment. Since the disease is incurable, the treatment is not focused on curing the patient but on caring for the patient and enhancing the quality of life for him and his surroundings. The treatment consists of (psycho)social counseling and practical help, advice and regular contact with the patient. An important component is the (sub) acute relief of problems caused by ALS. [4]

1.3. Problem Definition The incidence of ALS is low (1,5-2 cases per 100.000 citizens), this causes patients to be spread over a large geographical area. Due to the low incidence of ALS there are only a small number of care centers that expertise in ALS treatment. This also means that there are few physicians that have expertise in ALS treatment. So physicians that are experienced in ALS have to cover a large area (by Dutch standards) with relatively few patients. Another effect of ALS is that it weakens a patients muscles, this causes mobility problems, respiratory difficulties and they are in general very tired. This makes travelling a very hard 8

Video telephony in the (sub)acute care for ALS patients and a taxing experience for the patient. So instead of the patient going to the hospital, the physician often makes house calls. During the time that the physician has to spend travelling to a patient, no other patients can be helped. This hinders accessibility of care for ALS patients, care that the patients do need due to the progressive and distressing nature of ALS. ALS patients face a lot of new problems in performing daily life activities. This unfamiliarity creates the need to get information and reassurance from the physician. The cartoon in figure 2 illustrates this well.

Figure 2: “ALS” means “if” in Dutch. The patient asks: If I can’t …walk, swallow, talk, move or breathe? If I’m a burden to everyone? [5]

Het Roessingh in Enschede in the Twente region of the Netherlands is a rehabilitation center which has extensive experience in ALS treatment. They have one physician that is responsible for ALS treatment and he covers the whole province of Overijssel and a piece of Gelderland. ALS patients can call a telephone number 24 hours a day if they have questions. Many times these telephone consultations result in a home visit by the physician. This is due to the fact that problems cannot be properly assessed via speech only. There is a need for a “richer” medium of communication other than conventional telephony. [4]

Figure 3: map of the Netherlands divided in provinces. The dot in south-east of Overijssel indicates the city Enschede where het Roessingh is located.

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Video telephony in the (sub)acute care for ALS patients 1.3.1. ALS telemedicine project In previous studies with ALS patients conducted in by 2005 and 2006 by E. Meijer and H. Huizenga, researchers investigated what the use of a PC-based telehealth application could add to the care process. This telehealth application supported a video conferencing utility, a chat room and an online library where patients could get information on ALS. The system was found to work well, and one of the advantages identified was that videoconferencing allowed the healthcare workers to see the patients in their own surroundings from a distance. A drawback identified was the internet connection, which was not fast enough to give a fluent video conferencing connection (sound and video were out of synch). Another drawback was that healthcare workers had to leave their office and go to a separate room to use the system and that the system was completely new and unfamiliar to them. One of the outcomes was a recommendation to use a system which healthcare workers can use from their own office and fits in their regular schedule. [6][7] Current developments in mobile technologies mean that now mobile phones with video conferencing capability could provide health care workers with a communication tool that fits in their regular schedule and protocol and is usable from their own office (or in principle from anywhere). In this current research project we conduct a feasibility study to see if there is justification for a full-scale pilot.

1.4. UMTS The Universal Mobile Telecommunication System (UMTS) is one of the so-called third generation (3G) mobile communication systems. It is the successor of the Global Standard for Mobiles (GSM) (2G) and GPRS/EDGE (2,5G) systems. Here follows a short history of mobile telephony: The history of mobile phones starts in 1920s with radio telephony. In 1947 the first mobile phone network was set up on the highway between Boston and New York. Mobile phones where generally car-bound. The radio spectrum eventually became too crowded because of the limited space in the frequency spectrum (every phone had its own dedicated frequency). Through the introduction of cellular structure in modern automatic telecommunication systems this scarcity problem was reduced. [8] It wasn‟t until the introduction of GSM in the 1990‟s that mobile telephony began to be widely used by the public. This is also represented in the amount of mobile telephony subscribers, table 1. This table is taken from a TNO study in 2006 [9]and shows that the Netherlands (which now has 16,3 million inhabitants [10]) has 16,3 million mobile telephony subscribers. This doesn‟t mean that everybody has a mobile telephone, since a lot of people have a subscription for private use and a different one for professional use. But it does show that the mobile telephone is increasingly becoming a common sight in everyday life. Together with the increase in subscribers, the capabilities and usability of mobile phones continue to grow, with phones incorporating other functions such as cameras and personal organizers. [8]

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Table 1: Development of mobile telephone subscriptions in the Netherlands, 1995 – Q1 2006 (TNO study)

The UMTS service in the Netherlands was first introduced by Vodafone in February 2004 (followed by KPN and other telephone operators). Vodafone is aiming to have nationwide UMTS coverage in the Netherlands by the end of 2007. The UMTS network architecture is based on the established GSM network architecture and most UMTS phones are backwards compatible with GSM network. However, unlike GPRS (which uses the GSM network infrastructure), the rollout of UMTS services depended on installation of a whole new network infrastructure (antennas and cabling) and therefore represents a huge financial investment in infrastructure and also operating licenses. The GSM network in the Netherlands uses 900 MHz or 1800 MHz frequency bands. In the US and Canada GSM uses the 850 MHz and 1900 MHz bands because the other frequency bands are already allocated. The UMTS network works on different frequency bands than the GSM. UMTS uses the 1885-2025MHz for uplink and 2110-2200 MHz for downlink. In the US and Canada, the 1700 MHZ frequency band is used for uplink because the 1900 MHz band is already used by GSM. UMTS provides a lot more spectrum to users than GSM. It also has a separate frequency band for uplink and downlink. But that is not the only difference. UMTS also distributes its frequency space differently. Through these differences UMTS can offer much higher bandwidth. There are generally three different ways to distribute the frequency space available:  Time Division Multiple Access (TDMA) o Assigns each call a certain portion of time on a designated frequency.  Frequency Division Multiple Access (FDMA) o Puts each call on a separate frequency  Code Division Multiple Access (CDMA) o Gives a unique code to each call and spreads it over the available frequencies. GSM uses a combination of TDMA and FDMA and UMTS uses a form of CDMA called Wideband Code Division Multiple Access (W-CDMA) to distribute its frequency space. Although W-CDMA offers a higher bandwidth it also brings limitations. Unlike the TDMA/FDMA system of GSM, W-CDMA doesn‟t have a uniquely determined range or 11

Video telephony in the (sub)acute care for ALS patients capacity. This is due to the high degree of non-linearity, packet technology and mixed data rates. In W-CDMA coverage, capacity and quality are all interdependent. This means that for example coverage range decreases as more users use the system (capacity). In GSM systems coverage depends on the base station and mobile station transmitted power, gains and losses. The capacity, to certain extent, is a function of the hardware resources. The main difference in predicting W-CDMA and TDMA/FDMA coverage is that interference estimation is now critical since users use the same frequency bands and time slots. This interference influences the coverage, capacity and quality. In a study on the signal penetration of GSM 1800 and UMTS it was found that GSM and UMTS have globally the same signal penetration. This could be related to the fact that the frequency bands are close together (1800 and 2100 Mhz respectively). GSM 900 has a slightly higher penetration value.[11],[12][23] Table 2 shows a comparison of the 2G, 2.5G and the 3G systems and some of the applications they can support. The increase in speed that the 3G systems offers, opens a lot of opportunities for new forms of mobile communication and new applications. 2G Wireless The technology of most current digital mobile phones Features includes: - Phone calls - Voice mail - Receive simple email messages Speed: 10kb/sec Time to download a 3min MP3 song: 31-41 min

2.5G Wireless The best technology now widely available Features includes: - Phone calls/fax - Voice mail -Send/receive large email messages - Web browsing - Navigation/maps - New updates Speed: 64-144kb/sec Time to download a 3min MP3 song: 6-9min

3G Wireless Combines a mobile phone, laptop PC and TV Features includes: - Phone calls/fax -- Send/receive large email messages - High-speed Web Navigation/maps - Videoconferencing - TV streaming Speed: 144kb/sec-2mb/sec Time to download a 3min MP3 song: 11sec-1.5min

Table 2: comparison of 2G 2,5G and 3G wireless networks and their functionality [13]

1.5. Video Conferencing 1.5.1. The technology Videoconferencing has been around for a while, in 1956 AT&T build the first “picturephone” system. But up until the turn of the millennium videoconferencing systems were very expensive. The development of the internet, instant messaging applications and webcams means that now everyone could have a cheap videoconferencing system at home. There are different videoconferencing solutions, the most common are listed below. Rollabout Systems These are self-contained, mobile units comprising a monitor or television screen atop a console containing the associated hardware. The console is fitted with wheels or castors, so that it can be moved between sites, and has sockets for local electrical connections. Rollabout units, or group systems as they are sometimes known, produce high-quality sound and video and they are widely used in business.

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Video telephony in the (sub)acute care for ALS patients Set-top Systems As the name suggests, these units are also portable but miniaturization puts all of the circuitry into a single box that sits on top of a conventional television set to give a system of moderate quality. Desktop Systems In these examples, the system box has been dispensed with and the circuitry has been located on a standard PC card for insertion into a desktop computer. In desktop videoconferencing, quality is sacrificed for convenience although utility is still high and cost is low. [14] Wireless mobile phone systems Wireless mobile phone systems (Video telephones) are the next step in videoconferencing. This solution offers all the requirements in one small package. 1.5.2. Added value of video The face is the primary site for communication of emotional states, it reflects interpersonal attitudes; it provides nonverbal feedback on the comments of others; and some say it is the primary source of information next to human speech. (Knapp,1978,p263)[15] Humans communicate using several channels of communication simultaneously: speech, facial expression, gesture and other kinds of body language. When people are talking on the phone, they usually use gestures even though the person on the other side can‟t see them. Non-verbal communication makes it easier for people to understand each other. One of the most important sources of information about a person‟s emotional or physical state are facial expressions. This is very helpful during a medical consultation. For the patient and the health care professional, facial expressions are a powerful tool. Healthcare professionals can for example reassure people or communicate the severity of a problem. Healthcare professionals will also have more information to evaluate a consultation and so better respond to it. Patients could now better explain their problems and get the feeling that they are better understood. [15] Eye contact is another important factor during medical interviews. The right level of eye contact gives the patient the feeling he is understood and that the health care professional is listening to him. It creates a social bond between health care professional and patient which improves patient satisfaction. In a study on eye-contact using videoconferencing systems, a large TV screen, a medium sized screen and a small telephone size screen were compared in terms of the level of eye contact. One of the outcomes was that the small telephone size screen had only a small reduction in eye contact moments in comparison to the large and medium sized screens. It also stated that if patients get used to using a videophone it can be just as good a tool for a medical interview as a larger desktop videoconferencing system. [16]

1.6. Goals 1.6.1. Goal of this project: The main goal of this research project is to investigate the use of innovative technology (video telephony over UMTS) in supporting contact between ALS patients and the ALS team. We investigate if this technology can help support, and improve the quality of, the health-care process. In this Bachelor‟s assignment I focus on a feasibility study conducted as a pilot. The tasks are:  Design of, and methodological and technical preparation for, the survey (to be conducted by G. Schrijver as part of his Masters Assignment) 13

Video telephony in the (sub)acute care for ALS patients    

Conducting the pilot study Technical investigation of the actual UMTS coverage in Enschede Preliminary analysis of the results of the pilot Evaluating the tools used

Videophones are not to replace home visits, more they should reduce the number of unnecessary home visits because of better information on both the side of the healthcare professional and the patient as compared with normal telephone contacts. During this pilot experience will be gained with use of video telephones and of the current UMTS service, and on the basis of the results of this pilot recommendations will be made as inputs to the follow-up survey by G. Schrijver. 1.6.2. Expectations of the Roessingh In the Telehealth study by E. Meijer. The Roessingh (rehabilitation center) formulated the following hypotheses [6 p:11]:  Video telephony will lead to more efficient use of the physician‟s time so he can use more time for direct patient contact.  Video telephony will lead to a reduction in overhead activities, especially travelling time.  The approachable character of video telephony will lead to faster and efficient medical services. 1.6.3. Possible added value Video telephony can also be used for inter patient contact. It can be a tool for self help groups, for example . Between healthcare professionals this could also be a helpful tool. Patients‟ use of the phones in this way will also be investigated.

1.7. Research question Does the substitution of ordinary telephones by video telephones improve efficiency and quality of contacts between ALS patients and the care team? 1.7.1. Sub questions: The questions shown in Table 3 below all relate to the comparison of regular mobile telephony to video telephony. A control group will be using regular mobile phones and the experiment group will use the mobile video telephones. Table 3 shows the questions, and the instruments used to answer them. The questionnaires to be applied are discussed in detail in the methodology section in chapter 2.

Following replacement of ordinary mobile telephones by video telephones: Process - Does the physician spend less time travelling? - Does the frequency of the contacts change? - How many calls result in a visit? Content - Does the length of the conversation change - Are different topics discussed than right now?

Quantitative / Objective

Qualitative/ Subjective

Log Log Log

Log Log

Telemedicine satisfaction questionnaire 14

Video telephony in the (sub)acute care for ALS patients Quality of Contact - Are patients able to adequately explain their problems? - Are more problems solved and are they solved more adequately via videophone?

Log

- Does the patient find it easier to communicate with the physician? - Does quality of life increase through the use of video telephony? Use of technology - How easy is use is the video phone?

- How does the video/sound work (quality)?

Time it takes to use

Telemedicine satisfaction questionnaire Telemedicine satisfaction questionnaire Telemedicine satisfaction questionnaire Short form 36

Telemedicine satisfaction questionnaire

UMTS map/ experiment

- Does the patient have a positive or negative experience using a videophone? - Does the physician have a positive or negative experience using a videophone? - Does the current UMTS service provide adequate performance to support video telephony? - Is the sound quality adequate for professionals? - Is the video quality adequate for professionals? - Is the sound quality adequate for patients? - Is the video quality adequate for patients?

Telemedicine satisfaction questionnaire Telemedicine satisfaction questionnaire Telemedicine satisfaction questionnaire

Telemedicine satisfaction questionnaire

Table 3. Sub-questions and the data sources used to answer them

1.8. Course of the project The course of this project changed over time. Adjustment of the planning was necessary for reasons beyond our control. At first the project was to contain a trial over 4 weeks using the videophones in a “real life” situation in hospital with patients and a doctor. However there were some unforeseen problems and delays, first with the availability of the mobile phones and UMTS subscriptions and later with the discovery of problems with indoor UTMS coverage in the hospital building. At the same time new insights were gained concerning the trial. The initial idea was to only observe the patients before and at the end of the 4 week period of the trial (pre- and postdesign). But if the patients are observed in the 4 weeks prior to the trial and 4 weeks after the trial (a so called A-B-A design) there will more significant data to compare the trial outcomes with.

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Video telephony in the (sub)acute care for ALS patients In this Bachelor project the new trial design cannot be fully implemented in the available time due to the various time-delays experienced. Hence a different practical experiment was proposed to evaluate the extent of the UMTS coverage problem in reality. This investigation will support the follow up project. In this experiment the UMTS coverage in Enschede was analyzed and practical recommendation on the use of a videophone are made. Also a pilot was conducted by giving the preliminary questionnaires to the patients and analyzing the results.

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2. Materials and Methodology 2.1. Instrumentation 2.1.1. The mobile phones

Figure 4: the Sharp 903 and Motorola RAZR V3x

There are 2 types of phones at our disposal sponsored by Vodafone. The Sharp 903 and the Motorola RAZR V3x. Both phones have similar specifications. They both run on a java based operating system and have the ability to communicate via the UMTS network and are backwards compatible with GSM/EDGE network. The TFT screen resolution for both phones is 240 x 320 pixels with 0.262 million colors. The phones feature 2 cameras, an internal one looking towards the user and an external one looking towards the surroundings. The external camera of the Sharp 903 is 3.2 megapixels and of the Motorola is 2.0 megapixels. During a video call you don‟t notice the difference in quality. This is because bandwidth and not camera quality is the restraining factor. Both internal cameras are VGA 0.3 mega pixel camera‟s which results in a output resolution of 640 x 320 pixels. The internal camera is used to see each other during a video call. During a video call you can switch from the internal to the external camera to show things to the person on the other side. For detailed specifications on the phones see appendix B

2.2. The questionnaires To gather data on the impact of the addition of video on phone conversations different questionnaires have been used. These questionnaires were selected on the basis that they are validated instruments. Here follow the considerations for using them. The complete questionnaires can be found in Appendix F. 17

Video telephony in the (sub)acute care for ALS patients The syntax of the questionnaire codes is: . So AU means: A = ALSFRS-R questionnaire, applied to group U (UMTS patients = experimental group). 2.2.1. ALSFRS-R: revised ALS functional rating scale In this project the goal with the ALSFRS-R questionnaire is to check in what stage of ALS the patients are and how their condition progresses over time during the project. This will also serve to check the uniformity of the patient group (are all patients generally in the same stage of ALS?). There are different questionnaires available to evaluate the progression of the ALS disease, for example the “ALS Assessment Questionnaire” (ALSAQ) and the “ALS Functional Rating Scale – Revised” (ALSFRS-R). Both questionnaires have been validated. The ALSAQ is a 40 item ALS specific questionnaire which assesses health related quality of life. The ALSFRS-R is a 12 item scale which specifically covers the functional rating of a patient. The ALSFRS-R was chosen because it just measures the disease progression. Health related quality of life will be assessed with a different questionnaire. In this project a translated Dutch version was used. It was translated by G. Schrijver and checked by the lead physician. [17],[18] These will be designations used to indicate the ALSFRS-R questionnaire: AG ALSFRS-R questionnaire for the GSM group AU ALSFRS-R questionnaire for the UMTS group 2.2.2. Telemedicine Satisfaction and Usefulness Questionnaire The Telemedicine Satisfaction and Usefulness Questionnaire (TSUQ) is a validated 26 item questionnaire. It uses a five point Likert scale. It is designed to evaluate the perceptions of satisfaction and usefulness as well as actual utilization of various telemedicine services. For use in this project the questionnaire was translated in Dutch by G. Schrijver. The word telemedicine was substituted by video telephony. Also a derived form of this questionnaire was used to measure the expectations of patients for usage of the video phone. This derived form was made by selecting all the questions that could be answered without using the technology and asking what the expectations were. [19] These will be designations used to indicate the TSUQ questionnaire derivatives: BTU “Bruikbaarheid Telefonie UMTS groep” Usability Questions GSM phone for the UMTS group VVU “Verwachtings Vragen UMTS groep” Expectation Questions UMTS phone for the UMTS group BTG “Bruikbaarheid Telefonie GSM groep” Usability Questions GSM phone for the GSM group BTZ “Bruikbaarheid Telefonie Zorgverlener” Usability Questions GSM phone for the healthcare professional VVZ “Verwachtings Vragen Zorgeverlener” Expectation Questions UMTS phone for the healthcare professional 2.2.3. Shortform 36 Shortform 36 (SF36) is a validated 36 item questionnaire. SF36 is used for different purposes; it yields an 8 scale profile of functional health and well-being scores as well as psychometrically-based physical and mental health summary measures and a preferencebased health utility index. It is a general measure, as opposed to one that targets a specific age, disease, or treatment group. In this project SF36 will be used to evaluate a patients‟ quality of life. Quality of life is evaluated because it is the main goal of the treatment for ALS

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Video telephony in the (sub)acute care for ALS patients patients, since the disease is incurable. So if this technology contributes to the quality of life it would be a big incentive to continue the project. [20] These will be designations used to indicate the SF36 questionnaire: SFU Shortform 36 for the UMTS group SFG Shortform 36 for the GSM group

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2.3. Comparison and coding schemes To compare and evaluate the questionnaires the comparison scheme shown below is used. This is the original trial design as it was proposed in first instance. The design used a combination of pre- and post- and controlled trial. The patients would be given questionnaires before the experiment starts and when the experiment ended. This was done to check the change over time during the project. The syntax of the questionnaire codes is: <pre- or post-> So AU1 means: A = ALSFRS-R questionnaire, applied to group U (UMTS patients = experimental group) and the '1' indicates pre-. Pre- and postComparison of (common) questions By questionnaire and group PrePostAU1 AU2 BTU1 BVU2 Patients U VVU1 BVU2 SFU1 AG1 BTG1 SFG1 health care BTZ1 professional VVZ1 Z Patients G

Experimental/control AG1 AG2 BTG1 BTG2

AU1 AU2 BTU1 BVU2

SFU2 AG2 BTG2 SFG2 BVZ2 BVZ2

Purpose

Detect change in ALS status over time Compare usability of telephone with video telephone Compare expectations of video telephone with actual experience Detect changes in health status/outcomes over time Detect change in ALS status over time Control for changes in usability responses over time Detect changes in health status/outcomes over time Compare usability of telephone with video telephone Compare expectations of video telephone with actual experience

Purpose: Compare experimental and control groups with respect to: ALS status at preALS status at postusability responses to conventional telephony at preComparison of conventional telephony with video telephony

2.4. Methodology For the testing of medical procedures and medicines the Randomized Controlled Trial (RCT) design is the gold standard. It is considered reliable because it decreases the chance of coincidence through the use of a control group and randomization of the participants. This project will be in the form of a controlled trial and not an RCT because the patient group is not large enough and not all patients have good UMTS reception from their homes (one of the prerequisites for use of video telephony). So the control group will be comprised out of patients that don‟t have UMTS coverage in their home. Another reason for choosing a control group was because of the small size of the experimental group. Having a control group gives more data to compare the results with. The experiment group using the video phones will be called UMTS group and the control group will be called GSM group. 20


2.4.1. Patient recruitment The selection of the patients will be done by the physician. The selection will be based on the following inclusion and exclusion criteria for UMTS group:  The patient must be in the last stage of ALS  In this stage patients have the most questions, so this means more contact moments to survey.  UMTS coverage in the patients home  This is necessary to be able to make a video call with the physician.  Able to speak/write Dutch  No other serious diseases  Mentally able to answer questions  Able to use a telephone himself or another person in the vicinity The GSM group selection is done on the same criteria except for UMTS coverage. After patients are selected an introductory letter is sent (see Appendix A). In this letter it is explained that the project is being conducted by the University of Twente in collaboration with the physician at the Roessingh. The physician will phone in the next few days to ask for an appointment. The patient is under no obligation to participate and may refuse the appointment without giving any reason. Each patient who agrees gets a phone and a number assigned to him/her. Thereafter they are visited at home by the physician and the researchers and receives a verbal explanation and a written information sheet (see Appendix B). There will be different versions of the information sheet, one for the Motorola phone and one for the Sharp phone. The patient also receives an informed consent letter. If the patient agrees to participate they are asked to sign. If they want time to think they can keep the information and have a return visit a few days later. There are a total of 13 phones. These will be distributed among the physician, the researchers and the patients. The initial plan was to involve 10 patients using UMTS phones and 10 persons in the control group. However due to the lack of UMTS coverage at some patients‟ homes, the number of patients in the UMTS group was reduced to 6. 2.4.2. The experiment During the visit the patients are asked to fill in the group specific pre-questionnaires mentioned in section 2.1.2. Also the videophone are given to patients belonging to the experimental group. The researcher explains the functions on the UMTS phone, including, how to make a video call and how to store a number. A detailed list of what the researcher will do when visiting the patient can be found in the walkthrough in Appendix D. 4 weeks after the patients receive and begin to use the phones, the physician and the researchers will visit the patients again and let them fill in the post-questionnaires mentioned in section 2.1.2. During the 4 weeks pilot period the health care professionals log their contacts with the patients. These logs together with the questionnaire data will be used to evaluate the use of video telephony.

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2.5. Enschede video telephony coverage test During planning of the ALS study at Het Roessingh it was discovered that there are problems with indoor UMTS coverage in certain locations in Enschede, including the Roessingh rehabilitation center itself. Therefore an additional experiment was designed and implemented. This experiment is designed to sample a number of indoor locations in Enschede and record whether there is UMTS coverage there, and if so, record some qualitative properties of the connection. One location will be the Roessingh rehabilitation center. Other indoor locations around Enschede are selected to represent patients homes (which can be anywhere) and would normally be the site from which patients would contact ALS team members. A series of tests will be performed to take „snapshots‟ of the actual UMTS coverage indoors. The results of these snapshots will be compared to the theoretical coverage as stated on the Vodafone website. 2.5.1. Test method From a fixed position, being a room at the University of Twente, one person was called from several locations in Enschede, via video telephony. A fixed point of control was used to make sure that any differences in connection are the result of differences in connection strength at the various test The 3G symbol on sites in Enschede. From the various locations, a video telephony the Motorola phone connection was established, and video and audio quality observed. Also, asynchronies (time delays) between video and audio have been investigated. If possible, experiments will be performed in indoor locations, such as homes, malls, supermarkets, etc. By performing indoor experiments, we hope to replicate situations in which the highest signal strengths are required. Also, by performing the experiment indoors, we emulate the settings in which ALS-patients will contact their physician, which are likely to be indoors. If UMTS is available, a 3G-logo should appear on the telephones and establishing a video-call should be possible. There will be three experiments per location. First, the person measuring at the test site will call the person at the control point. Once the video telephony connection is established, the connection will be kept for a minimal time of one minute. Second, the person at the control point will call the person at the test site. This connection will also be kept for a minimum of one minute. To check for asynchronies between the video and audio signal, a clapperboard will be used at the test site. This clapperboard will be closed five times, and before each clap the number of the clap will be spoken (“one”…. “clap”….”two”….”clap”….etc) to prevent getting out of sync. The average time delay between visual clap and the sound of the clap will be considered as being the time delay between video and audio. The clapperboard experiment will be recorded on the phone so that delays can be analyzed at a later stage. Sound and audio quality as well will be judged by eye and will be rated on a numeric rating scale (NRS) from 0 to 10, with 0 being no video/audio at all and 10 being perfect video/ audio quality. The three experiments will be carried out with both the Motorola Razor as well as the Sharp 903SH. Since the Sharp 903SH has two connection setting (a setting that prioritizes quality and a setting that prioritizes speed), audio, video and time delays will be judged in both settings. As a reference site the Horst building of University of Twente will be used. Here a baseline experiment will be done. This will be done by two persons sitting in two separate rooms next to each other (as seen in fig. 5). A video call will be initiated and evaluated. During the 22

Video telephony in the (sub)acute care for ALS patients baseline experiment a test will be done to measure the roundtrip delay time for audio with various phones and settings.

Figure 5: schematic presentation of the baseline experiment

The audio roundtrip time will be measured as follows. During the video call the person in room A will make a noise which is audible in room B (through the wall). The person in room B will have a stopwatch, at the moment that he hears the noise from room A he will start the timer. When the person in room B hears the noise from room A via his mobile he will stop the timer. All other calls will be judged in comparison to the baseline experiment. In table 4 a list of locations is given which will be visited and tested for UMTS reception. Every location has been tested twice.

Perseusstraat 79

Type of location University building Student home

Sl louwesstraat 85

Student home

7545ES

Livio (Even numbers)

Nursing Home

7544 NT

Livio (Uneven numbers)

Nursing Home

7544 NX

Location Universtity of Twente

Roesingh Roesingh Research and Development

Revilidation centre R&D facility of the Roesingh

Zipcode 7522NB 7521ZB

7522AH 7522AH

Table 4 Locations used for the UMTS test

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3. Results 3.1. Experimental Group: Patient visits On the 3rd of September 2007 five patients were visited and introduced to the videophone. Five patients were visited instead of ten because there was a lack of good UMTS coverage at other patient homes. The objective was to get preliminary data on how the patients respond to a videophone and to test the protocols that were made. The “UMTS – group” protocol in Appendix D was followed. The patients were assigned a study number and given a telephone. At the patients the project and the functions of the phone were explained. After that four questionnaires were filled in:  AU1 – ALS questionnaire  BTU1 – Usability questionnaire telephony  SFU1 - Shortform 36  VVU1 – Video telephony expectations questionnaire It was notable that the leading physician plays a vital role in conducting the patient visits. During every patient visit the lead physician explained the project and helped the patients and or family members fill in the different questionnaires. Visiting the patients was a good way to observe at firsthand how patients initially reacted to the videophone and to see if the chosen tools were usable. It is apparent that the patients trust the lead physician very much. Also every patient used the opportunity of the lead physician visiting them at home to ask him questions (which they could also have asked via the phone). In the commentary below describing the different patient visits, patients are referred to by study number. The “U” prefix indicates membership of the experimental group (the group given UMTS video phones). U001 was a 51 year old male, living with his wife and 2 daughters. His wife and one of the daughters filled in the questionnaires for their father since the patient himself was sleeping. The family of this patient are more likely to call the physician than the patient himself since ALS is in the final stages. The first symptoms of ALS appeared 20 months ago. The total score on the AU questionnaire was 24 points of the maximum 60 points, where a score of 60 means no limitations and 0 means the most extreme limitations. U002 was 74 year old male, living with his wife. His daughter was also present during the explanation of the project. The patient could fill in the questionnaires himself with a little help from the lead physician. The first symptoms of ALS appeared 34 months ago The total score on the AU questionnaire was 44 points of the maximum 60 points. U003 was a 48 year old female living with her husband. This patient didn‟t have any control left in her limbs so the lead physician and her husband filled in the questionnaires for her. Her husband would also be the person to call the physician via the videophone. The first symptoms of ALS appeared 72 months ago. The total score on the AU questionnaire was 5 points of the maximum 60 points, U004 was 57 year old male living by himself. He stated that was unsure about participating in the project because he was unsure if he could understand the technology. The first symptoms of ALS appeared 15 months ago. The total score on the AU questionnaire was 44 points of the maximum 60 points. After the preliminary questionnaire this patient decided to withdraw from the project. The fifth patient didn‟t want to participate in the project. The patient said that she had very little affinity with technology and wouldn‟t be able to understand the telephone.

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3.2. Preliminary results patient questionnaires 3.2.1. ALS questionnaire (AU1) The ALSFRS-R questionnaire shows in what stage of ALS the patient is at the time of the experiment. These results will be used to check the uniformity of the patient group. In table 5 the results from the ALSFRS-R questionnaire is shown next to the disease duration and the age of the patients.

Table 5 total score for the ALSFRS-R questionnaire next to disease duration and age.

The thick black line indicates the maximum score of 60 for the ALSFRS-R questionnaire (a score of 60 means perfect health). This table confirms that no two people have the same course of the disease and that the patient group is quite variable. U002 and U004 are in generally the same stage of ALS. The age group is around 50 years of age except for U003. 3.2.2. Shortform 36 (SFU1) Shortform 36 has a 0 – 100 scale for 8 variables, 0 being the worst and 100 the best score. This questionnaire shows how the patient perceives his or her own health status. In the table below the different scores per patient are shown. All variables are shown and a physical and mental health summary is given. These summaries are average scores for the four mental and physical components for SF36. The mean scores for both of the physical and mental summary is 50 (for the general adult population in the US).[20] It is interesting to see that U001 and U002 are the patients with the highest mental health perception even though U004 is in generally the same or less severe stage of ALS. Another interesting outcome is that U003 has a higher physical health score than U001 even though U003 is in a very severe stage of ALS. All patients feel they are severely limited in their physical role but in their mental health U001 and U002 are above average but U003 and U004 are below average. Patients Variables Physical functioning Social functioning Role limitations: Physical

U001

U002

U003

U004

0 50

70 75

0 25

20 12,5

0

0

0

0

25

Video telephony in the (sub)acute care for ALS patients Emotional Mental health Energy/vitality Pain General health perceptions

100 75 31,25 22,5 30

100 90 81,25 87,5 50

0 75 31,25 45 20

Physical health summary 13 51 16 Mental health summary 64 86 32 Table 6 outcomes from the Short Form 36 questionnaire

0 30 31,25 45 0 16 18

3.2.3. Usability questionnaire telephony (BTU1) The usability questionnaire shows how the patients see their current situation. This situation is with a regular mobile phone number that they can call 24 hours a day and 7 days a week. The total score range for this questionnaire is 0 – 80, 80 being completely satisfied regarding the usability of regular telephony. Table 7 shows the results of the four patients.This shows that people are generally satisfied with the use of a regular telephone, except for U004.

Table 7 total scores for the telephony usability questionnaire

Interesting results from the questionnaire: Patient Number Totals U001 U002 U003 U004 I can explain my medical problems adequately during a telephone consultation Talking with a healthcare professional via a telephone gives just as much satisfaction as talking to a healthcare professional in real life.

Telephone consults are a convenient form of healthcare for me Telephone consults save me time I prefer a telephone consultation to a face to face consult

Agree Neutral Agree Disagree

2 2 2 1

Totally disagree

1

Agree

3

Totally disagree

1

Agree Neutral Agree Neutral

3 1 2 1

1 1 1

1 1 1

1 1 1

1

1 1

1

1

1 1

1

1 1

26

Video telephony in the (sub)acute care for ALS patients Totally disagree

1

1

Table 8 selection of results from the questionnaire

In table 8 a selection of questions from BTU1 and their results are shown. As was noticeable from the total scores of this questionnaire, patient U004 was negative towards usability of telephony in his care process. Patient U001, U002, U003 however were more positive. The results show that patients are able to explain their medical problems adequately. Also interesting to see is that most patients feel that talking on the phone with the health care professional gives just as much satisfaction as talking to that person in real life. The patients agree that telephone consultations are a convenient form of a healthcare for them and save them time. Two of the four patients would prefer a telephone consultation to a face to face consult. 3.2.4. Video telephony expectation questionnaire (VVU1) The video telephony expectation questionnaire has higher total scores per patient than the Telephone usability questionnaire, indicating that the patients have a higher expectation of the quality of the contacts via videophone than via conventional phone. The max score was 65.

Table 9 total scores for the video telephony expectation questionnaire

Agree Neutral Agree

3 1 3

Patientnummer 1 2 3 4 1 1 1 1 1 1 1

Neutral

1

1

Totals I expect that my healthcare professional can answer my questions via a video consultation I expect that my healthcare professional can get a good understanding of my condition during a video consultation. I expect that I can explain my medical problems well enough during a video consultation.

Agree

3

Neutral

1

I expect that talking with a healthcare professional

Agree

1

1

1

1 1

1

27

Video telephony in the (sub)acute care for ALS patients via a telephone gives just as much satisfaction as talking to a healthcare professional in real life.

Neutral

2

Totally disagree

1

Agree I expect that the lack of physical contact is no problem for me.

1

Neutral Disagree Totally disagree Agree I expect that video consults make it easier for me to contact my healthcare professional. Disagree Agree I expect that video consults are a convenient form of healthcare for me Disagree Totally agree

1 1

I expect that video consults save me time

Agree

1

Neutral

1

1

1 1

1 1 1

1

1

3 1 3 1

1

1

1

1

1

1

2

1

1 1 1 1 1

Table 10 selection of results from the questionnaire

In table 10 a selection of questions from VVU1 and their results are shown. As in BTU1 patient U004 is more negative about remote care than the other three patients. U001, U002 and U003 generally the same positive reactions. They expect that they can explain their problems well and that the health care professional can get a good understanding of their condition during a video consult. Except for the question about the lack of physical contact and if the amount of satisfaction from such a contact is the same as in real life. Everyone except U004 expects video consults to save time. 3.2.5. Summary The results from the four different questionnaires give us a clear picture of the four different patients. It shows how they see their own health and their attitude towards telephony and video telephony. U001 is in a severe stage of ALS, but has a positive attitude towards care via telephony and video telephony. U001 feels severely limited physically but is in good mental health. U002 is in the beginning stage of ALS and also has a positive attitude towards care via telephony and video telephony although U002 is neutral towards the lack of physical contact in video telephony. U002 is still able to function well physically as well as mentally. U003 is in the end stage of ALS and is also positive towards care via telephony and video telephony. U003 feels very limited physically and feels below average mentally. U004 is in the beginning stage of ALS and is negative towards care via telephone and video telephony, especially on the subjects of lack of physical contact, the amount of satisfaction of such a contact and if this is a convenient form of healthcare for him. Physically and mentally he doesn‟t feel healthy. The outcomes from the questionnaires show that most patients are initially positive towards care via video telephony. However the results from the usability questionnaire show that they are comfortable with their current situation as well.

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3.3. Results of the Enschede video telephony coverage test The video telephony coverage test gave a practical insight into the actual experienced UMTS coverage as compared to the Vodafone coverage map. The test was done in collaboration with G. Schrijver. It was found that the two types of phones (Motorola and the Sharp) use their available bandwidth differently according to the software they use. This is especially noticeable in the fluency of the connection and the audio quality and delay. The results of the Enschede video telephony test were compared to the UMTS map on the Vodafone website. These maps show only a snapshot of the coverage at that time because the maps are updated weekly [21]. Figure 6 shows the Vodafone UMTS coverage map of Enschede in week 40, 2007, with superimposed circles marking the test locations used in our UMTS coverage experiment. On the Vodafone maps three different categories of UMTS signal strength are shown. [22]  “Optimal” - shown as green areas o Outdoor as well as indoor coverage in almost all homes  “Good” - shown as brown areas o Outdoor coverage in almost every situation  “Variable” - shown as red o Outdoor coverage at street level

Figure 6: the UMTS map of Enschede in week 40 2007, the circles mark the test locations. [22]

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3.3.1. The baseline test The baseline test was done in the Horst building of the University. According to the UMTS coverage map the reception should be optimal, meaning indoor coverage in almost every situation. In table 11 the results from the baseline test is shown. The superimposed black arrow in the figure points to the exact location of the video call. The signal strength was measured using the indicators on the phones. The Motorola and Sharp phones have different scales for indicating signal strength. The Motorola uses a scale from 0 – 5 and the Sharp uses a scale from 0 – 4. Zip code Type of location Time of day Date Indoors/outdoors

7522NB University 16:05 8-8-2007 30-10-2007 Indoor

Coverage map Vodafone website 21 -08 -07 Phone used to call: Sharp

Quality mode Speed mode Sharp Motorola Sharp M otorola < 0,5 < 0,5 < 0,5 < 0,5

Average Delay in signal (s) Audio Quality (0-10) 8 8 Video Quality (0-10) 8 7 Video Fluency (0-10) 6 7 3G available? Yes Yes Signal Strength 8-8 2007 4 of 4 5 of 5 Signal Strength 30-10-2007 4 of 4 5 of 5 Table 11 Results from the baseline test.

8 6 8

8 7 8

As expected the coverage is very good, both phones showed full signal strength. When initiating a video call it was found that the Sharp and Motorola phones had different settings. The Motorola has just one setting for video telephony. The Sharp has a quality and speed setting. The one prioritizes the picture quality and the other prioritizes video fluency. In figure 7 below you can see a screenshot of the different modes. The speed mode is noticeably more “blurry” than the quality mode but when talking to a person via a video call, it is a lot more fluent and feels more natural.

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Figure 7 Difference in image quality between speed and quality mode.

The time delay tests were not always doable because of the small time delays. When the time delay was below 0.5 seconds the time delay wasn‟t measured because of the high influence the researcher would have on the outcomes. So in practice only when calling with a Sharp phone to another Sharp phone with quality mode enabled was the time delay measurable. There were no noticeable differences in audio quality between the different modes and phones. The video quality however was quite variable, the quality mode of the Sharp gave the best picture and the speed mode of the Sharp gave the worst picture. The Motorola phone, which had only one setting, was in between. As part of the baseline test the audio round trip time was measured to see if there is any delay. This was measured because delay can be very annoying during a conversation. The results are shown in table 12. Audio round trip time test Sharp – Sharp Speed mode Test 08-08-2007 0,7 Test 31-10-2007 0,6

2,6

Sharp – Sharp Quality mode 0,5

0,7

0,6

0,8

average (sec.)

1,7

0,6

0,8

0,7

Motorola Sharp

Motorola – Motorola

0,8

Table 12 Audio round trip time results

When video calling with a Sharp to Sharp mobile phone the audio round trip time wasn‟t very bothersome (less than a second). When using the quality mode it was even less. But it was surprising to find out that when using a Motorola phone to video call a Sharp phone, the audio roundtrip time increased dramatically to more than two seconds in the first test. This was very bothersome during a conversation. In a second experiment this was tested again and it was found that the audio round trip time was comparable to the other results.

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3.3.2. Testing at different locations As part of the video telephony test, signal strength at different locations was compared to the UMTS map on the Vodafone website. All locations were visited twice and the results shown are the average these two visits. Location 1 Zip code Type of location Time of day Date Indoors/outdoors

7521ZB Home 16:13 7-8-2007 30-10-2007 Indoor


Quality mode Sharp Motorola Average Delay in signal (s) 1,1 < 0,5 Audio Quality (0-10) 9 8,5 Video Quality (0-10) 8 7 Video Fluency (0-10) 5 6,5 3G available? Yes yes Signal Strength 7-8-2007 4 of 4 5 of 5 Signal Strength 30-10-2007 4 of 4 5 of 5

Speed mode Sharp <0,5 9 6 9

Motorola <0,5

9 6 8

The first test This was a student home in the north-west of Enschede. The coverage map showed optimal coverage, this was confirmed by the signal strength indicator on the phone. The video call went smoothly and only the video fluency in quality mode was mediocre. The second test The second test went just like the first test. The video call went well and only when calling in quality mode there was a noticeable delay.

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Location 2 Zip code Type of location Time of day Date Indoors/outdoors

7544NX (Uneven numbers) Nursing Home 9:45 21-8-2007 30-10-2007 Indoor

Coverage map Vodafone website 21 -08 -07 Phone used to call: Sharp Average Delay in signal (s) Audio Quality (0-10) Video Quality (0-10) Video Fluency(0-10) 3G available? Signal Strength 21-8-2007 Signal Strength 30-10-2007

Quality mode Sharp Motorola 0,8 < 0,5 8 8 7,5 6,5 4,5 6 Yes Yes/No 1/2 of 4 0/2 of 5

2/3 of 4

Speed mode Sharp <0,5 8 4,5 8

Motorola <0,5 8 6 8

2-3 of 5

The first test: This was a call made from a nursing home in the south of Enschede. The Nursery home is divided in two big buildings next to each other, both location were tested. According to the UMTS map, the reception should have been optimal in both buildings. However we found that indoors the reception would fluctuate a lot depending on where in the building you stood. Even when standing still the reception would often be fluctuating between zero and half of the max signal strength. Here we found an interesting feature on the phones. When a video call is initiated and you walk to a place where previously you didn‟t have UMTS reception the phone still tries to hold the connection for as long as possible. The video fluency and quality dramatically decrease, but when you get back to a place where reception is better, it will increase again. The second test: In the second test an increase in signal strength was noticed however it still wasn‟t very stable. It would fluctuate around half the max signal strength. This did result in better video and audio quality, than in the first test.

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7544NZ (even numbers) Nursing home 9:45 21-8-2007 30-10-2007

Indoor

Coverage map Vodafone website 21 -08 -07 Phone used to call: Sharp Average Delay in signal (s) Audio Quality (0-10) Video Quality (0-10) Video Fluency (0-10) 3G available? Signal Strength 21-8-2007 Signal Strength 30-10-2007

Quality mode Sharp 0,8 8 8 4 Yes 2/3 of 4 2/3 of 4

Motorola <0,5 7 6 6,5 Yes 1/3 of 5 2/3 of 5


<0,5 8 7 8

The first test This call was made in the second building of the nursing home. In this building the reception was a little better than the first (the uneven numbers). But even with half signal strength you notice a lag in the connection when talking during the video call. The second test Signal strength was a little better than on the first test for Motorola phone. The video call went fluent except when in quality mode.

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Video telephony in the (sub)acute care for ALS patients Location 4 Zip code Type of location Time of day Date Indoors/outdoors

7545ES Home 10:47 21-8-2007 30-10-2007 Indoor


Quality mode Sharp Motorola Average Delay in signal (s) 0,8 < 0,5 Audio Quality (0-10) 8,5 8 Video Quality (0-10) 8,5 7 Video Fluency (0-10) 5 7 3G available? Yes Yes Signal Strength 21-8-2007 4 of 4 5 of 5 Signal Strength 30-10-2007 4 of 4 5 of 5

Speed mode Sharp <0,5 8,5 6 8

Motorola <0,5 9 7 8

The first test This was a second student home used as a test location. As expected there was full UMTS coverage on both phones. This resulted in a very good video connection (except for the fluency in the quality mode). The second test There was almost no noticeable change between the first and the second test. Signal strength was the same and all the video calls went as well.

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7522AH Roessingh 12:05 21-8-2007 30-10-2007 Indoor


Quality mode Sharp Motorola Average Delay in signal (s) 0,5 < 0,5 8 Audio Quality (0-10) 8 7 Video Quality (0-10) 8 6 Video Fluency (0-10) 6 3G available? Yes No Signal Strength 21-8-2007 1/4 of 4 Signal Strength 30-10-2007 1/2 of 4 2 of 5

Other locations in the Roesingh


Motorola <0,5

8 7 7

Roesingh Research and Development (RRD): No connection Cantina (first floor): 3/4 of 4 2nd floor: 2/3 of 4 3rd floor: 1/4 of 4

The first test These are the results from the test conducted at the Roessingh. This test was very important because the physician would normally call from this place. His office was on the third floor, so video fluency and video and audio quality were measured on that floor. On the UMTS map the area is totally green, so full signal strength was expected. It was surprising to find out that the signal was very unstable inside the Roessingh building. Here the different software of the phones was noticeable. The Motorola phone didn‟t have any 3G connection and the Sharp phone did (although with low signal strength). The third floor where the lead physician was located displayed only 1 stripe of signal strength and even with the Sharp phone it would often lose its 3G connection. However it was found that it helps to move around in the building, especially standing near windows or for example moving to a wide open space like the canteen on the first floor. The second test The second test was conducted on the third floor again and surprisingly, the Motorola phone now did have a 3G connection. Also the signal strength on the Sharp phone increased. Signal strength would fluctuate but when a video connection was established it gave good performance.

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3.3.3. Summary The Enschede video telephony test gave a lot of practical insight in the use of the UMTS phones and the coverage of the UTMS network in Enschede. It was found that the UMTS map on the Vodafone website gives an indication where there is UMTS reception but it doesn‟t say anything about the signal strength. In a building the signal strength can differ from floor to floor and room to room depending on its location and proximity to windows. It was also found that the two phones use different software and this was noticeable when UMTS signal strength was low. It was also found that when using the different priority settings on the Sharp phone quality and fluency could be greatly influenced. The quality mode can be used when something needs to be shown in great detail. The speed mode can used when talking with each other. Because of the short delay this is a very natural way of communicating. It also seems that UMTS signal strength changes over time; on three locations it stayed the same (maximum strength), and on the other three locations signal strength was higher in the second test. The UMTS signal did have the tendency to fluctuate a lot. This could be due to the fact that UMTS cells shrink and expand depending on the number of users and the amount of bandwidth they use.

37


4. Discussion and Conclusion 4.1. General conclusion The goals and course of the project changed over time, as explained in section 1.8: “course of the project”. The final goals of the study were:  design and preparation of the trial;  conducting the pilot survey;  analysis of the results;  undertaking a UMTS indoor coverage experiment. The conclusions and recommendations given here are based on the preliminary results of the patient questionnaire and the Enschede video telephony experiment. One of the goals of this project was to analyse the preliminary results from the pilot. This consisted of an account of the visit at the patients that would participate in UMTS group and the analysis of results from the questionnaires that the patients filled in prior to the start of the experiment. Five patients were visited and four patients agreed to participate in the first instance. However after the preliminary questionnaires one patient decided to withdraw because he had very little affinity with mobile phones. From the patient visits it was concluded that the help of the lead physician was invaluable during these visits. The patients trust their physician and he helped to explain the project and helped the patients to fill in the questionnaires. The patient group is around 50 years of age, this could be a problem with the affinity these persons have with mobile phones. From the questionnaires it was found that the patients are happy in the way that they receive their care now, and that 3 of the 4 patients have equally high expectations of care via video telephony. They expect that care via video telephony could be a good form of healthcare for them. However some patients are afraid this would lead to impersonal contact. So it is good to emphasize that video telephony is not to replace home-visits but to reduce the number of unnecessary home-visits. The Enschede video telephony test gave insight into the UMTS reception indoors at on different locations in Enschede. This test also gave a lot of practical insight and experience with video telephony. It was found that it is important to use the right settings on the Sharp telephone during a video call. It can switch between quality and speed mode. The speed mode gives a very fluent connection and lends itself well for a normal conversation. The quality mode gives very sharp pictures but sacrifices fluency. Also sound and video can lose synchronisation. The quality mode can be used to show images in greater detail. The Motorola phone in contrast had only had one setting. The fluency and quality of the Motorola phone was found to be a compromise between the two modes on the Sharp phone, giving reasonable quality and fluency. The reception in Enschede was variable. Locations that were marked green on the Vodafone coverage map varied from full coverage to very little or no indoor coverage. The Roessingh building is a practical example how variable the coverage is. On the first floor in the canteen there was full UMTS coverage and on the third floor, in the room where the lead physician was located, there was little or no coverage. When there was little or no coverage the phone wasn‟t able to start a video call. However if the video call was initiated in a place where there was good UMTS coverage, and the person then moves to the location where there was little to no reception, the video call would still continue, albeit with poor quality. 38


The tools used for this project such as the questionnaires, walkthroughs, the information sheets for the phones and the introduction letters to the patients and healthcare professionals, were found to be useful to set up the project. These tools are suitable for use in the follow-up survey by G. Schrijver. However the introduction letters and the walkthroughs do need to be adapted to the new A-B-A design.

4.2. Recommendations -

-

-

-

-

-

4.2.1. Concerning telephone use and coverage Make use of the Sharp phone for the project. The phones have the tendency to switch to the GSM network when UMTS coverage is low (1 of 5 stripes on the phone). This is especially the case with the Motorola phone. Also the Sharp has more functionality during a video call. So it is recommended to use the Sharp phone for this project. In the Roessingh building it is recommended to start a video call from a place with good reception such as the first floor canteen or near a window on the third floor. Once the connection is established it is possible to move around to places where there less coverage. When using the Sharp, use the speed mode for a conversation and the quality mode to show things in detail. The information sheets for Sharp telephone need to be updated to explain the different functions during a video call. UMTS signal strength is dependent on a lot of factors (for example the number of active users in a cell) so don't get discouraged if there is no signal where there used to be. Don't trust the Vodafone coverage map blindly, but check the location for indoors reception with the phone. 4.2.2. Concerning patient visits For the first contact with the patients go with the lead physician. The patients know and trust him and are more willing to participate in the project knowing that he is involved. The patient group is willing to try these phones but, given their age, could use some help to get acquainted with these phones. The lead physician can play an important role here again. He could schedule regular appointments with the patients for a test call so the patients can get experience using the phones and see the benefit for themselves.

4.3. Overall Conclusion Overall the technology looks very promising. The phones are easy to use and making a video call is almost as easy as making a standard phone call. It takes a little while to get used to this new form of communication, since you are now able to see each other. But it stops feeling awkward very soon after a few calls. The quality and fluency are also good enough to get a clear picture of the facial expressions of the person you‟re talking to and of his or her surroundings. One of the preconditions for introducing this kind of service is that there is enough UMTS coverage to use the video function on the phones. Lack of (indoor) coverage is one of the limitations encountered; another is the lack of UMTS coverage in rural settings. This problem may be solved in future in the Netherlands, but may continue to be an obstacle in other countries with large rural areas with sparse populations where investment in 3G infrastructure for rural areas may be deemed to be not well justified. Another difficulty is that 39

Video telephony in the (sub)acute care for ALS patients people need a clear idea what they can use video telephony for, otherwise it won‟t be used. Once the coverage problem is solved and people become more used to video telephony, it has more chance to be incorporated as a helpful tool in health care processes.

40


Reference: [1] http://www.alsa.org/als/ Website of the ALS association [2] Principles of neural science 4th edition Kandel, ISBN 0071120009 page 696 [3] http://www.alscentrum.nl Website of the Dutch ALS centre of the Academic Hospital of Utrecht. [4] Assignment discription: UMTS in de subacute zorg voor patiënten met amytrofe laterele sclerose (ALS) [5] Uitzonderlijke innerlijke kracht Pallium journal for palliative care September 2004 [6] Telehealth voor patienten met ALS E. Meijer, University Twente Juli 2005 [7] Telecare voor patienten met ALS H. Zuidinga, University Twente Oktober 2006 [8] A brief history of mobile communication in Europe T. Dunnewijk, S. Hulten, Journal for Telematics and Informatics nr. 24, 2007 [9] TNO-rapport 34084 Marktrapportage Elektronische Communicatie S. de Munck, L. Kool, September 2006 [10] www.cbs.nl Dutch institution for statistics, consulted on 14 Aug. 07 [11]” UMTS” J. Sanchez, M. Thioune 2007 ISBN 1-90520971-1 [12] Assessing the effects of GSM Cell Location Re-use for UMTS Network C. M. H. Noblet et al. 3G Mobile Communication Technologies, 26-28 March 2001, Conference Publication No. 477 0 IEE 2001 [13] http://www.3gnewsroom.com/html/about_3g/what_is_3g.shtml 13 - 08 - 2007 [14] Essentials of Telemedicine and Telecare. A. C. Norris 2001 John Wiley & Sons Ltd ISBNs: 0-471-53151-0 (Paperback); R. Kleissen en E. Janssen 2006 [15] Psychologische gespreksvoering G. Lang 2003 ISBN 9789024409617 page 127 -130 [16] Eye Contact in Medical Examinations Using Videophones – T. Suzuki, M.D. Telemedicine and e-Health Volume 12 [17] The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function, J.M. Cedarbauma et al.1999, [18] The amyotrophic lateral sclerosis assessment questionnaire, C. Jenkinson Journal of the Neurological Sciences 180 (2000) 94–100 [19] Development, Validation, and Use of English and Spanish Versions of the Telemedicine Satisfaction and Usefulness Questionnaire S. Bakken et al.; Journal of the American Medical Informatics Association 2006 [20] http://www.sf-36.org/tools/SF36.shtml Short form 36 website, Summary measures. [21] Telephone call with the Vodafone helpdesk 17 oktober 2007 [22] http://umtscoveragetool.vodafone.nl/UMTSdekking.html The Vodafone website, consulted on the 5th of October 2007. [23] Characterisation of Signal Penetration into Buildings for GSM and UMTS L. Ferreira et al. 2007

41


Appendix Appendix A Introduction letters Letter to the control group: Beste heer/mevrouw, Voor de studie BioMedische Technologie van de Universteit Twente zijn wij i.s.m. het Roesingh bezig met een onderzoek. Wij willen onderzoeken wat de invloed is van het gebruik van de telefoon is op de behandeling van ALS. Verwachting van proefpersonen Wat wij van u vragen is of u mee wilt werken door met uw telefoon met de revalidatie arts (Emile Janssen) te bellen zoal nu al het geval is. Er zal door het ALS team bijgehouden worden hoelang een gesprek duurt en welke onderwerpen er besproken worden. Door middel van deze gespreksgegevens en de enquêtes zullen wij onderzoeken wat de invloed is van het gebruik van telefonie op de communicatie tussen u en het ALS-team. Tijdsduur Het gaat in eerste instantie om een experiment van vier weken. Na deze vier weken zal er een evaluatie plaatsvinden, waarna er een vervolgonderzoek zal komen dat door Geert Schrijver uitgevoerd zal worden. Contact informatie Voor vragen over het project kunt u terecht bij de studenten. Deze kunt u een email sturen of telefonisch bereiken tijdens kantooruren. De contact gegevens van de studenten zijn: Daniel Brummelman Mobiel nummer: 06-21127734 Email: [email protected] En Geert Schrijver Mobiel nummer: 06-21127737 Email: [email protected] Vriendelijke Groet, Daniël Brummelman & Geert Schrijver

42

Video telephony in the (sub)acute care for ALS patients Letter to the patient group: Beste heer/mevrouw, Voor de studie BioMedische Technologie van de Universteit Twente zijn wij i.s.m. het Roesingh bezig met een onderzoek. Wij willen onderzoeken wat de invloed is van het gebruik van een mobiele telefoon met beeldbelfunctie op de behandeling van ALS. Procedure Wat houdt dit onderzoek in? U krijgt van ons een mobiele telefoon met beeldbelfunctie. Met deze telefoon mag u zoveel bellen en beeldbellen als u wilt naar reguliere telefoonnummers (zowel vast als mobiel) in het binnenland en de Vodafone helpdesk. Ook mag u onbeperkt gebruik maken van de internet mogelijkheden van de telefoon. Het project wordt gesponsord door Vodafone dus er zijn voor u geen kosten aan het bellen en internetten verbonden. Verwachting van proefpersonen Wat wij van u vragen is of u mee wilt werken door met de geleverde mobiele telefoon te beeldbellen met de revalidatie arts (Emile Janssen). U mag voor elke vraag of probleem bellen, net zoals nu al het geval is. Er zal door het ALS team bijgehouden worden hoelang een gesprek duurt en welke onderwerpen er besproken worden. Doormiddel van deze gespreksgegevens en de enquêtes zullen wij onderzoeken wat de invloed is van het gebruik van videotelefonie op de communicatie tussen u en het ALS-team. Tijdsduur Het gaat in eerste instantie om een experiment van vier weken. Na deze vier weken zal er een evaluatie plaatsvinden, waarna er een vervolgonderzoek zal komen dat door Geert Schrijver uitgevoerd zal worden. Teruggave Telefoons De telefoons zelf blijven eigendom van Vodafone en zullen na afloop van het vervolgexperiment weer geretourneerd worden aan Vodafone. Contact informatie Voor technische ondersteuning met betrekking tot de mobiele telefoon kunt u contact opnemen met de Vodafone helpdesk op nummer 1200 (met de mobiele telefoon) of op 06-54 500 100 (met vaste telefoon). Voor niet-technische vragen of vragen over het project kunt u terecht bij de studenten. Deze kunt u een email sturen of telefonisch bereiken tijdens kantooruren. De contact gegevens van de studenten zijn: Daniel Brummelman Mobiel nummer: 06-21127734 Email: [email protected] En Geert Schrijver Mobiel nummer: 06-21127737 Email: [email protected] Vriendelijke Groet, Daniël Brummelman & Geert Schrijver

43

Video telephony in the (sub)acute care for ALS patients Letter to the healthcare professional: Beste heer/mevrouw, Voor de studie BioMedische Technologie van de Universteit Twente zijn wij i.s.m. het Roesingh bezig met een onderzoek. Wij willen onderzoeken wat de invloed is van het gebruik van een mobiele telefoon met beeldbelfunctie op de behandeling van ALS. Procedure Wat houdt dit onderzoek in? U krijgt van ons een mobiele telefoon met beeldbelfunctie. Met deze telefoon mag u zoveel bellen en beeldbellen als u wilt naar reguliere telefoonnummers (zowel vast als mobiel) in het binnenland en de vodafone helpdesk. Ook mag u onbeperkt gebruik maken van de internet mogelijkheden van de telefoon. Het project wordt gesponsord door Vodafone dus er zijn voor u geen kosten aan het bellen en internetten verbonden. Wat wij van u verwachten Wat wij van u vragen is of u mee wilt werken door met de mobiele telefoon te beeldbellen met de patiënten en eventueel met de andere leden van het ALS team die meewerken aan dit onderzoek . Ook willen wij u vragen een aantal dingen bij te houden van de gesprekken met de patiënten (o.a. tijdsduur en globaal het onderwerp van het gesprek). U zult hiervoor een excelsheet krijgen, waarop u alle gegevens kunt invullen. Door middel van deze gespreksgegevens en de enquêtes zullen wij onderzoeken wat de invloed is van het gebruik van videotelefonie op de communicatie tussen u en de patiënten. Tijdsduur Het gaat in eerste instantie om een experiment van vier weken. Na deze vier weken zal er een evaluatie plaatsvinden, waarna er een vervolgonderzoek zal komen dat door Geert Schrijver uitgevoerd zal worden. Teruggave Telefoons De telefoons zelf blijven eigendom van Vodafone en zullen na afloop van het vervolgexperiment weer geretourneerd worden aan Vodafone. Contact informatie Voor technische ondersteuning met betrekking tot de mobiele telefoon kunt u contact opnemen met de Vodafone helpdesk op nummer 1200 (met de mobiele telefoon) of op 06-54 500 100 (met vaste telefoon). Voor niet-technische vragen of vragen over het project kunt u terecht bij de studenten. Deze kunt u een email sturen of telefonisch bereiken tijdens kantooruren. De contact gegevens van de studenten zijn: Daniel Brummelman Mobiel nummer: 06-21127734 Email: [email protected] En Geert Schrijver Mobiel nummer: 06-21127737 Email: [email protected] Vriendelijke Groet, Daniël Brummelman & Geert Schrijver

44


Appendix B. Phone information sheet Informatie blad Motorola RAZR V3x Voelt u zich vrij om gebruik te maken van de telefoon en alle bijbehorende functies. Hoe zet ik de telefoon aan? Houdt de aan/uit toets (de rode toets) ingedrukt totdat het beeldscherm oplicht. Vervolgens toetst u de pincode „0000‟ in (deze pincode mag niet gewijzigd worden). Bevestig de pincode met de „ok‟ toets en het toestel kan gebruikt worden Hoe sla ik een nummer op? Stap 1 Typ het nummer in op het beginscherm. Stap 2 Druk op de rechter boventoets Stap 3 Druk op “ok” Stap 4 Voer naam in Stap 5 Druk op de linker boventoets om het nummer op te slaan. Hoe kom ik bij mijn opgeslagen nummers? Druk in het beginscherm op het pijltje naar beneden en u zit in uw telefoonboek. Hier kunt het nummer kiezen die u wilt Hoe start ik een video gesprek? Kies een nummer uit uw telefoonboek of toets een nummer in, druk vervolgens op de videobel knop (de blauwe toets linksboven van het toesenbord) en het videogesprek wordt gestart. Tijdens een videogesprek is het handig om de bijgeleverde “headset” te gebruiken in verband met de geluidskwaliteit. Contact Voor technische vragen over het toestel kunt u de vodafone helpdesk bellen op nummer: 1200 (met de mobiele telefoon). Voor overige vragen en vragen over het project kunt u de volgende personen bellen of emailen: Daniël Brummelman Tel: 0621127734 Email: [email protected] Geert Schrijver Tel: 0621127737 Email: [email protected] Een normaal gesprek opwaarderen naar videogesprek: 45

Video telephony in the (sub)acute care for ALS patients U kunt ook tijdens een “normaal” gesprek uw gesperk opwaarderen tot videogesprek. Dit doet door tijdens het gesprek op de linkerboventoets te drukken en in het menu dat verschijnt, naar boven te scrollen tot dat “opwaarderen naar video gesprek” verschijnt en op “ok” te drukken. Informatie blad Sharp 903 SH Voelt u zich vrij om gebruik te maken van de telefoon en alle bijbehorende functies. Hoe zet ik de telefoon aan? Houdt de aan/uit toets (zie afbeelding) net zo lang ingedrukt totdat het beeldscherm oplicht. Voordat u gebruik kunt maken van het toestel moet u eerst de pincode „0000‟ invoeren (deze mag niet gewijzigd worden) en deze vervolgens bevestigen met de „ok‟-toets (zie afbeelding). Hoe sla ik een nummer op? Typ het nummer in op het beginscherm. Druk op de „ok‟-toets Kies „nummer opslaan‟ Druk op de „ok‟-toets Kies „als nieuw contact‟ opslaan Hoe kom ik bij mijn opgeslagen nummers? Druk op het pijltje naar beneden (onder de zilveren knop) en u zit in uw telefoonboek. Hier kunt het nummer kiezen wat u wilt Hoe start ik een video gesprek? Kies een nummer uit uw telefoonboek of toets een nummer in, houdt vervolgens de bel knop (zie afbeelding) langdurig ingedrukt, totdat de telefoon verbinding maakt. Indien er geen video gesprek mogelijk is zal de telefoon overschakelen naar een normaal gesprek. Tijdens een videogesprek is het handig om de bijgeleverde “headset” te gebruiken in verband met de geluidskwaliteit. Hoe verbeter ik de beeldkwaliteit Standaard staat de telefoon geconfigureerd voor optimale vloeiendheid. Dit gaat ten koste van de beeldkwaliteit. Om een betere beeldkwaliteit te verkrijgen drukt u tijdens een videogesprek op de „ok‟ toets, gaat u naar „video-oproepinstellingen‟, drukt u nogmaals op de „ok-toets‟, drukt u bij „kwaliteit voor inkomende beelden‟ nogmaals op de „ok-toets‟ , selecteert u „kwaliteit voor‟ en drukt u nogmaals op de „ok-toets‟. Contact Voor technische vragen over het toestel kunt u de vodafone helpdesk bellen op nummer: 1200 (met de mobiele telefoon). Voor overige vragen en vragen over het project kunt u de volgende personen bellen of emailen: Daniël Brummelman Tel: 0621127734 46

Video telephony in the (sub)acute care for ALS patients Email: [email protected] Geert Schrijver Tel: 0621127737 Email: [email protected]

Appendix C Detailed specification of the phones Motorola V3x: WAP: Connectivity: Memory: Performance Features

enhanced WAP 2.0 browser via Bluetooth® wireless technology 64 MB embedded user memory up to 99 min

Video talk time: Standby time: Talk time: Bands: Lifestyle Features

up to 250 hours up to 144 minutes UMTS 2100 / GSM 900/1800/1900

Advanced speech recognition: Bluetooth® Technology:

advanced speech recognition technology allows easy-to-use voice dial print and image capability, J2ME, A2DP for stereo handset

Messaging Features MMS (Picture / photo + text + sound) SMS E-Mail Instant Messaging Call Management Features Speaker Independent Voice Activation Personalisation/Fun Features 3G technology: MP3 stereo surround sound (speakers or headset) automatic keypad lighting in camera mode Sleek, chic design: Integrated Digital Camera: 2 mega-pixel camera: Audio Player:

UMTS

with internal antenna integrated digital camera (VGA) for 2way video calling with 8x zoom, macro mode setting and LED Support of AAC+, MPEG4, WMV, WMA, MP3 and Real Video/Audio files

Technical Specifications Weight: Volume:

125g 89 cc

Dimensions (H x W x D):

99 x 55 x 19.8 mm

47

Video telephony in the (sub)acute care for ALS patients Display Type:

large 240 x 320 TFT colour main display; 2.2 inch screen, external: CLI 96 x 80, 65K colour TFT

Removable Memory:

up to 512 MB additional capacity via the removable TransFlash memory card http://www.motorola.com/consumer/v/index.jsp?vgnextoid=6853756582c2b010VgnVCM10 00008206b00aRCRD&prodGroup=All+Phones&show=fullSpecification Sharp 903SH General Date Announced

Second Quarter 2005

Date Released

Fourth Quarter 2005

Mode

UMTS, GSM 900 / 1800 / 1900

Dimensions

109 x 50 x 29 mm

Battery Type

Lithium-Ion

Battery Life

240 mins talktime, 290 hours standby time

Weight

148 grams

Form Factor

Clamshell

Phone book

Dynamic Memory

Display Type

2,62,000 colors, TFT (240 x 320 pixels)

External Display

No

Expansion Slot

Yes (Mini SD Card slot)

Form Factor

Clamshell

Games

Yes

Polyphonic Ringtones

Yes (128 chords)

Vibrating Alert

Yes

Connectivity Bluetooth

Yes

E-Mail client

Yes

Bluetooth

Yes

E-Mail client

Yes

GPRS

Yes, Class 10 (4+1/3+2 slots)

Infrared (IR)

Yes

48

Video telephony in the (sub)acute care for ALS patients Java Apps (J2ME)

Yes (Midp ver 2.0)

MMS

Yes

Synchronization

Yes

SMS

Yes

USB

Yes

WAP

Yes

Organiser Functions Onboard Memory

8 Mb shared, 64 mb Mini SD Card

Picture ID

Yes

Special Functions Camera

Yes (3.2 MP, 2048x1536 pixels, 2x optical zoom)

FM Radio

No

GPS

No

Mp3 Player

Yes

Video Recording

Yes

http://www.phoneyworld.com/handsets/specs.aspx?phone=sharp_903

Appendix D. Walkthroughs (protocol) Walkthrough Healthcare professional Before going to the healthcare professional:  Select healthcare professionals by approaching them and asking if they are willing to participate in the project (done by the lead physician)  Assign a telephone number to healthcare professional  Note number of telephone in the log  Give healthcare professional ID# Z0XX At the healthcare professional:  Go to the healthcare professional  Give verbal explanation o Explain project (see LDZ)  Goal of the project  Procedure  Timespan of the experiment  Return of the telephones  Our expectations from a participant  Contactinfo  Explain what is not the intention  Fill in questionnaires o BTZ1 o VVZ1  Give telephone (check the right number)  Give information sheet. 49




o Explain functions via information sheet  How to turn on the telephone  2 cameras  How to video call  How to store a number o Give demonstration  Video call Ask if they have any questions.

Walkthrough GSM patient group Before going to the patient  Select patients (done by the lead physician) o From patient database  Send letter to the patient (different from the UMTS letter, no information about UMTS) explaining the goal of the project, if they want to participate and what is expected from them. (done by the lead physician)  Follow up with phone call asking if they agree to participate. If they agree, make an appointment.  Make a list of participants and number them: G0XX  Note the telephone number in the log Patient (GSM)  Go to the patient  Give verbal explanation o Explain project (see LDG)  Goal of the project  Procedure  Timespan of the experiment  Our expectations from a participant  Contactinfo  Explain what is not the intention  Confidentiality  Sign informed consent papers  Fill in questionnaires o AG1 o BTG1 o SFG1  Ask if they have any questions.

Walkthrough UMTS patient group Before going to the patient:  Select patients (done by the lead physician) o Check UMTS Coverage  Send letter to the patient explaining the goal of the project, if they want to participate and what is expected from them. (done by the lead physician)  Follow up with phone call asking if they agree to participate. If they agree, make an appointment.  Assign a telephone number to patient  Note number of telephone in the log  Give Patient ID U0XX

50

Video telephony in the (sub)acute care for ALS patients At the patient (UMTS)  Go to the patient  Give verbal explanation o Explain project (see LDU)  Goal of the project  Procedure  Time span of the experiment  Return of the telephones  Our expectations from a participant  Contactinfo  Questions about the telephone can be discussed with the Vodafone helpdesk  Questions about the project can be discussed with the students.  Explain what is not the intention  Confidentiality  Sign informed consent papers  Fill in questionnaire: o AU1 o SFU1 o BTU1 o VVU1  Give telephone (check the right number)  Give information sheet. o Explain functions via information sheet  How to turn on the telephone  Enter pin-code  2 camera‟s  How to videocall  How to store a number o Give demonstration  Videocall  They can always call the physician  Ask if they have any questions.

Appendix E. Log sheet for use by healthcare professional to log patient contacts

51

Duur consult: Duur consult: Duur consult: Duur consult:

Huisbezoek

Poli RCR

Poli MST

Overig (specificeer) Frequentie:

Duur consult:

Telefonisch consult

Overig commentaar

Overig commentaar

Onderwerp(en) en frequentie overig

Overig (specificeer)

Wensen

Acceptatie

Verloop ziekte

Behandelmogelijkheden

Behandel mogelijkheden team

Symptomen

Inhoudelijke gegevens

Duur consult:

Videotelefonie consult

Type consult (kruis aan)

Datum en tijdstip consult

Naam Patient

Consultgegevens

Duur:

Reistijd:

Huisbezoek-afspraak gemaakt (J/N):

Huisbezoek-afspraak gemaakt (J/N):

Belde patiënt zelf op (ja/nee):


52


Appendix F. Questionnaires

Het gebruik van telefonie bij de begeleiding van ALS-patienten Vragenlijst AU1

Patient ID nr: ………… Datum:

…………

Plaats:

…………

Onderzoeker: …………

53


Vragenlijst voor ALS-patienten Algemene vragen 1) 2) 3) 4) 5) 6)

Wat is uw geslacht? (man/vrouw) Wat is uw leeftijd? Hoe lang geleden (in maanden) is de ALS-diagnose gesteld? Waar traden de ALS-verschijnselen het eerst op? (ledematen/gezicht) Hoeveel maanden geleden traden de ALS-verschijnselen voor het eerst op? Wat is uw hoogst voltooide opleiding? (geen opleiding, basisschool, mid. school, MBO, HBO, WO) 7) Wat is uw relatie met uw belangrijkste verzorger (echtgenoot, zoon/dochter/overige familie/anders) 8) Hoeveel uur zorg ontvangt u per dag van uw belangrijkste verzorger? Deze vragenlijst bestaat uit 12 vragen. Zou u per vraag het antwoord aan willen kruisen dat het beste overeenkomt met uw situatie? Gelieve per vraag slechts 1 antwoord aan te kruisen. Dagelijks functioneren 1) Mijn spraak is a. Normaal b. Hoorbare spraakmoeilijkheden c. Begrijpelijk bij gebruik van herhalingen d. Begrijpelijk wanneer er ook gebruik wordt gemaakt van nonverbale communicatie e. Ik ben niet meer in staat verbaal te communiceren 2) Speekselproductie: a. Normaal b. Lichte maar duidelijke overmaat van speeksel in de mond; mogelijk kwijlen gedurende de nacht c. Matige overmaat van speeksel; mogelijk minimaal kwijlen d. Aanmerkelijke overmaat van speeksel; licht kwijlen e. Aanmerkelijke overmaat van speeksel; zakdoek/tissue permanent noodzakelijk 3) Slikken a. Geen problemen met eten en/of drinken b. Lichte problemen met eten en/of drinken; incidenteel verslikken c. Aanpassingen in eetpatroon gemaakt d. Aanvullende drinkvoeding noodzakelijk e. Volledig afhankelijk van drinkvoeding 4) Schrijven a. Normaal b. Langzaam of slordig; woorden zijn leesbaar c. Niet alle woorden zijn leesbaar d. In staat om pen vast te houden, maar niet in staat om te schrijven e. Niet in staat om pen vast te houden 5) Voedsel snijden en vasthouden van eetgerei a. Normaal 54

Video telephony in the (sub)acute care for ALS patients b. Enigszins langzaam en onbeholpen, maar geen hulp benodigd c. Meeste voedsel is te snijden, hoewel langzaam en onbeholpen; enige hulp is noodzakelijk d. Voedsel moet door anderen gesneden worden; zelf langzaam eten is mogelijk e. Niet in staat zelfstandig te eten 6) Aankleden en hygiene a. Geen problemen b. Zonder hulp, maar met verhoogde moeite en verminderde efficiency c. Periodiek hulp of vervangende methoden nodig d. Hulp noodzakelijk bij zelf-verzorging e. Totale afhankelijkheid 7) Omdraaien in bed en schikken van het beddegoed a. Normaal b. Licht onhandig en traag, maar geen hulp benodigd. c. In staat om te draaien en het beddegoed te schikken, maar met veel moeite d. Kan een begin maken met draaien en beddegoed schikken, maar hulp is noodzakelijk e. Hulpeloos 8) Lopen a. b. c. d. e.

Normaal Lichte loopproblemen Loopt met assistentie Niet in staat te lopen Geen functionele beenbewegingen meer

9) Traplopen a. Normaal b. Langzaam c. Licht onstabiel of vermoeid d. Assistentie benodigd e. Niet mogelijk 10) Kortademigheid als gevolg van lichamelijk inspanning a. Niet b. Treed op bij lichte inspanning zoals lopen c. Treed op bij eten, douchen, aankleden d. Treed op in rust; problemen bij zitten of liggen e. Ernstige problemen; gebruik van hulpmiddelen wordt overwogen of is al aanwezig 11) Algehele kortademigheid a. Niet b. Problemen met ‟s nachts slapen agv ademnood c. Extra kussen benodigd om te kunnen slapen (meer dan 2) d. Kan alleen zittend slapen e. Niet in staat te slapen 12) Gebruik van hulpmiddelen als gevolg van kortademigheid a. Niet b. Periodiek gebruik van non-invasieve mechanische ventilatie c. Continu gebruik van non-invasieve mechanische ventilatie gedurende de nacht d. Continu gebruik van non-invasieve mechanische ventilatie, zowel dag en nacht 55

Video telephony in the (sub)acute care for ALS patients e. Invasive mechnische ventilatie mbv intubatie of tracheostomy

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Het gebruik van telefonie bij de begeleiding van ALS-patienten Vragenlijst BTU1


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Patient Plaats: ID nr: ………… ………… Datum: Onderzoeker: ………… ………… Plaats:

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Onderzoeker: …………57

Video telephony in the (sub)acute care for ALS patients Vragenlijst telefonie Interactie met zorgverlener 1) Mijn zorgverlener gebruikt informatie van het telefonische consult tijdens de bezoeken die hij aan mij brengt a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 2) Mijn zorgverlener kan mijn vragen beantwoorden via een telefonisch consult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 3) Mijn zorgverlener kan zich een zich een goed beeld vormen van mijn medische problemen tijdens een telefonisch consult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 4) Mijn zorgverlener kan oplossingen aandragen voor mijn problemen tijdens een telefonisch consult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 5) Ik volg de adviezen van mijn zorgverlener beter op sinds ik gebruik maak van telefonische consultatie. a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 6) Ik kan mijn medische problemen goed uitleggen tijdens een telefonisch consult. a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 7) Ik zou gebruik blijven maken van het telefonisch consult als dit mij gevraagd werd door mijn zorgverlener a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 8) Praten met de zorgverlener via de telefoon geeft net zo veel voldoening als praten wanneer hij fysiek aanwezig is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens

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Video telephony in the (sub)acute care for ALS patients 9)

Het gebrek aan fysiek contact met de zorgverlener tijdens een telefonisch consult is een probleem voor me a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 10) Telefonische consults maken het makkelijker voor me om de zorgverlener te raadplegen a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens Telefonisch consult vragen 11) Ik ben meer betrokken bij mijn gezondheid sinds ik gebruik maak van telefonische consults a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 12) Telefonische consults helpen me om beter om te gaan met mijn gezondheid en medische behoeften a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 13) Telefonische consults zijn een handige manier van het aanbieden van gezondheidszorg voor me a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 14) Telefonische consults besparen me tijd a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 15) Mijn privacy is gewaarborgd tijdens een telefonisch consult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 16) Ik prefereer een telefonisch consult boven een face-to-face consult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens

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Het gebruik van telefonie bij de begeleiding van ALS-patienten Vragenlijst VVU1


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Plaats:

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Onderzoeker: …………

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Video telephony in the (sub)acute care for ALS patients Verwachting vragenlijst videotelefonie voor de patiënt. 1) Ik verwacht dat beeldtelefonie makkelijk te gebruiken is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 2) Ik verwacht dat de beeldkwaliteit goed is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 3) Ik verwacht dat de geluidskwaliteit goed is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 4) Ik verwacht dat de beeldtelefoon prettig in gebruik is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 5) Ik verwacht dat mijn zorgverlener mijn vragen kan beantwoorden via een videoconsult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 6) Ik verwacht dat mijn zorgverlener zich een goed beeld kan vormen van mijn medische problemen tijdens een videoconsult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 7) Ik verwacht dat mijn zorgverlener oplossingen kan aandragen voor mijn problemen tijdens een videoconsult a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 8) Ik verwacht dat ik mijn medische problemen goed kan uitleggen tijdens een videoconsult. a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens

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Video telephony in the (sub)acute care for ALS patients 9) Ik verwacht dat praten met de zorgverlener via de videotelefoon net zo veel voldoening geeft als praten wanneer hij fysiek aanwezig is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 10) Ik verwacht dat het gebrek aan fysieke contact met de zorgverlener tijdens een videoconsult een probleem voor me is a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 11) Ik verwacht dat videoconsults het makkelijker voor me maken om de zorgverlener te raadplegen a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 12) Ik verwacht dat videoconsults een handige manier zijn van het aanbieden van gezondheidszorg voor mij a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens 13) Ik verwacht dat videoconsults me tijd besparen a. Volledig mee eens b. Mee eens c. Neutraal d. Mee oneens e. Volledig mee oneens

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Video telephony in the (sub) acute care of ALS patients. Author: Daniël Brummelman

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