Exploring mobile information systems for adolescent cancer patients

Adolescent cancer patients have to deal with many dependencies and obligations. Very often they are torn out of their social environment and become isolated because of changing therapy cycles and different treatment locations. This causes significant social and economic damages. The objective of this article is to present the first steps of an empirical exploration of the possibilities of mobile IT-support for communication and coordination for this target group during treatment and aftercare. Special emphasis is put on the effects of mobile systems on the patient’s perceived quality of life. The background here fore is a four-month field experiment conducted together with the cancer station of the hospital of Heidelberg University. We focus on particularities of and challenges for mobile information systems for patients in Germany and outline necessary future research aspects in this field. 1 Diagnosis of the problem situation Cancer diseases are after cardiovascular diseases the second most frequent causes of death in Germany. Every year approx. 338.000 people are confronted with the diagnosis “cancer” (Deutsche Krebshilfe 2003), out of these approx. 1800 are children/adolescents under 15 years (Arbeitsgemeinschaft Bevolkerungsbezogener Krebsregister in Deutschland 2002). Cancer among adolescents is considered as a chronic disease (Pfefferbaum 1990, p. 555). It is important that the affected adolescents can have an as normal as possible physical and psychological development since this can be an important step towards a successful coping with the disease (Kyngas et al. 2000). The treatment (e.g. in the case of leukaemia) usually lasts two years and consists of several different stages. During the different stages the patient migrates between locations: Permanent hospital phases, ambulant/day hospital phases and home care phases. In some stages of the treatment cycle patients have to be isolated because the chemotherapy has weakened their immune systems. Extensive medication plans, different physicians, many different consultation appointments and strong side-effects very often demand too much from the patient and its family. The adolescent is excluded from important social events in his social network (Rowland 1990, p. 535). Additionally many patients retreat into their shells because the physical changes of their bodies make them feel fragile and unattractive (AdamsGreenly 1990, p. 563). These aspects show the importance of patient interaction with their existing social networks but also the relevance of developing new social contacts, for instance with other patients. Additionally it becomes evident that adolescent cancer patients have to deal with many coordination problems (medical appointments, medication plans, etc.), not to mention control and reminder issues that parents have to deal with. Another challenge emerges from the patients’ migrations between contexts /locations (school, hospital, etc.). These insights deliver several starting points for ICTsupport in general and for mobile IS-support in particular. 1 The authors would like to express their gratitude to the IIIrd Department of Pediatrics Department of Pediatric Oncology, Hematology and Immunology (Prof. Kulozik) at the University Children's Hospital Heidelberg, Germany and especially to Mrs. Renate Sedlak, who supported significantly the underlying joint research project between Heidelberg University and Technische Universitat Munchen. For further information please visit the website http://www.onko-kids.de 2 A Mobile Information System for Adolescent Cancer Patients 2.1 General conditions and requirements for an ICT-Solution Frequently changing locations/contexts determine patients as nomadic users that require ubiquitous access to relevant information and ubiquitous communication possibilities. It is known from innovation research (e.g. (Rogers 1995)), that a successful innovation (in this case a mobile IS for patients) has to have a relative advantage (subjectively perceived advantages), it should be compatible with the values, attitudes and demands of a potential user and its environment, it should be easy to use (comprehensive and manageable), trialable and observable. A potentially fruitful approach is a mobile system that follows his user everywhere or that the user always carries along. Since mobile phones are widely spread among adolescents such a system could be based on mobile phones. This would be pragmatic especially given the already existing adaptation of the target group to mobile phone usage. 2.2 Mobile radiotelephone services and healthcare A system based on pulsed radiation (such as GSM/UMTS mobile radiotelephone service) has to deal with some problems in the context of hospitals. In many hospitals and medical practices the use of mobile phones is restricted or prohibited (Otto/von Muhlendahl 2003, p. 26) because of potential disturbance of vital medical equipment (Goslich 2003). However, in reality this prohibition is often handled less restrictively. Impacts of high-frequency magnetic fields (as caused by mobile phones) on the human health are addressed very controversially in academia and practice. Especially new often inconsistent or contradictory research results cause frequently explosive discussions (Berg/Breckenkamp/Blettner 2003). Potential adverse health effects are assigned to thermic effects of radiation, but also athermic effects are suspected. A final evaluation of the biological risks of emissions caused by mobile phones is currently hardly possible (Maes/Haumann 2002, p. 31). The broad usage of cellular phones exists only a couple of years; therefore further research especially on the long-term effects is still necessary before scientifically profound evaluations can be made. Mobile phones can cause technical disturbances of sensitive medical equipment (e.g. cardiac pacemakers) (Goslich 2003). Correct shielding against magnetic fields and sufficient distance (radiation loses intensity squared to the distance between sender and receiver) to medical equipment are said to be sufficient for avoiding disturbances (Bundesamt fur Strahlenschutz 2003). Several types of wireless communication have already entered the healthcare system (Campbell/Durigon 2003, p. 233). Some hospitals use already WLAN, location-based services (e.g. for emergency calls) and transmission of medical data directly to the clinic bed or from the ambulance to the hospital are currently being explored (Goslich 2003). In the following we will develop a scenario for mobile IS usage of adolescent cancer patients. 2.3 A Scenario Markus Fiedler (fictitious name) has been diagnosed with cancer a couple of years ago. The apprentice has recently completed his second therapy cycle. When he is on his way he has always all his medical data in his pocket: a smartphone contains all important information about his disease and allows him to keep contact with his hospital, family and friends. Several times a day the device is beeping. By this sound the smartphone reminds him to take his medicine. All important data, diagnostic findings (e.g. blood parameters) and a pain / side-effect diary are on his device and accessible anytime and from any place. Frequently changing schedules and appointments can easily be administrated. Markus’ autonomy and independence are increased and mistakes reduced. The smartphone allows him to use several communication channels (E-Mail, Instant Messaging, SMS and MMS). Thus he can easily maintain contact with his social network, other patients of school mates. Following we describe a system that is intended to realize the previously outlined scenario. 2.4 The applied system The hardware chosen for this study is a smartphone, a combination of a PDA, a digital camera and a tri-band mobile phone, distributed by O2 Deutschland GmbH & Co. OHG (figure 1). Hardware: XDA II (distributed by o2 Germany GmbH & Co. OHG); Operating System: Microsoft Pocket PC. Features: Tri-Band, 32 MB working storage, SD I/O-Slot, Java-capable, GPRS-, WLAN-, IR& Bluetooth-capable, built-in camera, etc. Applications: MS Office (Pocket), MMS, SMS, Internet-Browser, E-Mail-Client, ... Figure 1: The applied mobile device XDA II with technical specifications The PDAand camera-functionalities can be used separately from the phone unit allowing usage of the device independently from the permission to use a mobile phone in certain areas. The device can be used as an internet access device, displaying ordinary internet pages with its browser and allowing sending and receiving e-mails, and with an extension it is WLAN-compliant. User dialogs can be made via a touch-screen, using either a virtual keyboard or handwriting recognition. There are plenty of applications available for pocket pc devices, most of them being similar to pc desktop applications. For the support of adolescent cancer patients especially the coordination tools (calendaring, diary, notepad) and communication tools (sms, e-mail, instant messaging) are of major interest and their usage in the field study will be consequently analysed in more detail.