NPCAA – Developing a mobile app to raise awareness of Nasopharyngeal Cancer (NPC) and to gather epidemiological data
Yogyahealth aims to develop a mobile application, text messaging alert system, and website to improve NPC awareness in local communities in Yogyakarta, Indonesia. Additionally, this will improve patient compliance with treatment and establish a tool for family physicians to register and refer patients with a suspected diagnosis of NPC.
Nasopharyngeal carcinoma (NPC) is rare in most parts of the developed world, but is highly endemic in many areas of the developing world with the highest rates in South East Asia. In Indonesia, which is the 4th biggest country in the world with a population of more than 250.000.000 people (2014 census), NPC accounts for more than 50 % of all head and neck cancers diagnosed there (with an incidence of more than 6 per 100000 and a mortality of more than 5 per 100000).
A combination of genetic, viral and lifestyle factors such as local diets has contributed to the proliferation of the disease in regions across South East Asia. Due to the limited awareness of both the local population and local family physicians, most patients are diagnosed at a very advanced stage at which treatment is often limited to palliative measures only. This accounts for the high mortality rate observed.
Data from Cancer research UK indicate that there is a 30% improvement in survival rates when patients are diagnosed in the early stages of the disease. No effective patient and family physician awareness and training program or routine referral system exists for these patients, and treatment facilities available in tertiary referral centers are limited. Patient questionnaires which assess patients’ risk factors (with known familial predisposition) and which would allow risk stratified screening methods and programs are not available.
AIMS AND OBJECTIVES:
The aims of this mobile application are firstly to develop an NPC awareness tool for both patients and family physicians in local communities and to develop risk stratifying patient questionnaires to identify high-risk patient groups, secondly to enable local family physicians to gather the necessary data, diagnose NPC early and refer the patients to the appropriate tertiary referral centers, thirdly to empower local communities with the obtained data and encourage investment in better local treatment facilities.
COURSE OF ACTION AND EXPECTED OUTCOME:
This program shall be established in Yogyakarta Province (Central Java) over a period of 18 months. In this region we have a long-standing collaboration via the ASEA-Uninet collaboration and the University of Innsbruck, international cancer centers (London and Amsterdam) and the Dr. Sardjito Hospital in Yogyakarta/Gadjah Mada University in Yogyakarta, the district general hospitals and primary health care centers (so called ‘Puskesmas’). If successful, the mobile app and text messaging alert system will be expanded across Indonesia and eventually South East Asia.
Applications for funding of this project have been submitted to ASEA-Uninet (Bernd Rode Award).