Worldwide Use of Internet-based Survivorship Care Plans


several groups over the past two decades have demonstrated that more and more cancer survivors desire as much information as possible about their disease and treatment, and that many are ready and willing to take an active role in managing their care.15–17


Certain demographic


groups of cancer survivors appear to seek information more frequently than others, namely those who are younger (


Although desire for information and autonomy


has been demonstrated to vary with such demographic features as well as with cultural norms, giving survivors worldwide the option to have further information seems universally indicated.


The Internet as a Tool for Cancer and Survivorship Information


Although healthcare providers appear to appreciate the potential benefit of providing survivorship care plans,19


creating them is certainly


a resource-intensive activity that may be expensive and time- consuming. In response to this, a small number of co-operative and survivorship-orientated US-based groups have initiated efforts to provide care plans via the Internet. The Internet represents a rapidly growing source for transmission of health information worldwide. Recent work has shown that over 50% of a US sample of cancer patients used the Internet to seek cancer-related information, with many citing the reason for Internet use being to help them make informed decisions regarding treatment and side effect management.20


Although cancer


survivors appear to continue to prefer interpersonal communication with healthcare providers over all other sources of information, many appear to augment information provided with that from other sources, often the Internet,21


and a recently surveyed group of US survivors


reported that they would turn to the Internet for cancer-related information second only to their healthcare provider.18


Although data regarding Internet use by non-US survivors are more limited, use of the Internet for cancer-related information appears to be increasing worldwide. Carlsson recently documented a rise in Swedish Internet use in the past decade, with 6% of cancer patients seeking Internet-based information in 1998 versus 59% in 2008.22


A


recent survey of Australian women demonstrated that 62% of women presenting to a breast screening programme accessed the Internet for health-related information, and 70% related that they would access the Internet for breast cancer information if incurring such a diagnosis.23 Similarly, Newnham and colleagues demonstrated that 77% of ambulatory Australian oncology patients report seeking cancer information on the Internet.17


availability of non-English-language information may be an obstacle to those seeking cancer information on the Internet, as has been documented by Chinese24


and French groups;25,26 however, the Internet


appears to be a tool whose role in providing information is increasing worldwide at a rapid pace.


International Use of Internet-based Survivorship Care Plans, Including the LIVESTRONG Care Plan


Currently, a handful of Internet-based tools for creation of survivorship care plans are available. The first of these, the LIVESTRONG Care Plan, was first made available via OncoLink, a cancer information website based at the University of Pennsylvania, in May 2007. OncoLink (www.oncolink.org) is a website dedicated to the general needs of cancer patients and survivors, as well as their family members and care- givers, and serves over 3.9 million pages monthly to 385,000 unique


EUROPEAN ONCOLOGY US Non-US Europe Canada Australia Certainly, in many parts of the world the


internet protocol (IP) addresses. The care plan tool, first launched with the name OncoLife, was developed by a small team of oncology nurses and physicians. After being piloted to test groups of survivors, the tool was made publically available via the OncoLink website. Detailed design and implementation procedures have been described previously.12


The


care plan tool is designed to allow users to enter information regarding demographics, diagnosis and treatments received. Once this information has been entered, users receive customised, individualised survivorship care plans that may be printed or stored electronically in portable document format (PDF). Over the nearly three years since the tool was made available, it has evolved over six iterations. With each iteration, further information has been added and user queries have become more detailed to allow improved customisation of information provided. From the time of launch, the care plan has been available in both English and Spanish.


With the second care plan iteration, queries regarding location of residence were added. As of March 2010, 10,405 care plans had been created, with data regarding location of residence available for 8,969 users. After the first 18 months of availability, with a total of 1,872 users with residency data available, 91% of users reported being from the US,


11 100


20 40 60 80


0 70%


South/Central America Canada


Africa Europe Australia/New Zealand n=366 (31%)


Middle East Asia


Figure 2: Reported Receipt of Previous Survivorship Information and Treatment Summaries by Users of the LIVESTRONG Care Plan According to Country/Region


n=305 (26%) n=50 (4%) n=24 (2%)


n=24 (2%) n=15 (1%)


n=411 (34%)


Figure 1: Distribution of Non-US Users of the LIVESTRONG Care Plan, an Internet Tool for the Creation of Cancer Survivorship Care Plans


40% 18% 9% 18%


Previous survivorship information 12%


14% Treatment summary provided


37% 21% 25%


%


Page 1  |  Page 2  |  Page 3  |  Page 4  |  Page 5  |  Page 6  |  Page 7  |  Page 8  |  Page 9  |  Page 10  |  Page 11  |  Page 12  |  Page 13  |  Page 14  |  Page 15  |  Page 16  |  Page 17  |  Page 18  |  Page 19  |  Page 20  |  Page 21  |  Page 22  |  Page 23  |  Page 24  |  Page 25  |  Page 26  |  Page 27  |  Page 28  |  Page 29  |  Page 30  |  Page 31  |  Page 32  |  Page 33  |  Page 34  |  Page 35  |  Page 36  |  Page 37  |  Page 38  |  Page 39  |  Page 40  |  Page 41  |  Page 42  |  Page 43  |  Page 44  |  Page 45  |  Page 46  |  Page 47  |  Page 48  |  Page 49  |  Page 50  |  Page 51  |  Page 52  |  Page 53  |  Page 54  |  Page 55  |  Page 56  |  Page 57  |  Page 58  |  Page 59  |  Page 60  |  Page 61  |  Page 62  |  Page 63  |  Page 64  |  Page 65  |  Page 66  |  Page 67  |  Page 68  |  Page 69  |  Page 70  |  Page 71  |  Page 72  |  Page 73  |  Page 74  |  Page 75  |  Page 76  |  Page 77  |  Page 78  |  Page 79  |  Page 80  |  Page 81  |  Page 82  |  Page 83  |  Page 84  |  Page 85  |  Page 86  |  Page 87  |  Page 88  |  Page 89  |  Page 90  |  Page 91  |  Page 92