Supportive Oncology


6% from Canada and only 3% from other countries.12 been presented in abstract form,27


Further data have and are updated here. Use by non-US


individuals has continued to increase, with 14% of users now reporting living outside the US. In addition, the group of non-US survivors using this tool has become increasingly diverse, with 34% being from Canada, 31% Europe (most commonly Great Britain) and 26% Australia/New Zealand (see Figure 1). Small percentages of users now represent Asia (4%), South/Central America (2%), Africa (2%) and the Middle East (1%). Both US and non-US users were equally likely to have utilised the Spanish version of the care plan tool (


Users completing care plans appear to be somewhat more likely to be survivors themselves (62%) than family members/friends (10%) or healthcare providers (27%) among US users compared with non-US users, 54% of whom identified themselves as survivors (13% family members/friends and 31% healthcare providers). Healthcare providers who created plans for survivors identified themselves as physicians more often in non-US (15%) than US (9%) countries.


Interestingly, non-US users were more likely to report having received previous survivorship information (18%) than were US users (12%) (pFigure 2). These trends varied significantly across regions of the world: Australian users reported receiving a treatment summary in 70% of cases and survivorship information in 40%. This compares with only 21% of European survivors receiving treatment summaries and


Certainly, these data do not provide enough information to draw conclusions regarding the reasons behind such discrepancies, which are in all likelihood multifactorial and may include differences in healthcare systems, physician–patient ratios and expenditure of resources. Interestingly, however, US and European survivors appear to be among the least likely to receive this information. Hopefully, this trend will begin to change over time, as attention to survivorship issues outside of a few specialised centres within the US is a relatively modern concept. Certainly, these issues have come to the forefront over the past decade,28


and the few groups who have implemented


Internet-based, accessible tools for survivorship care plans are testament to this. Aside from the LIVESTRONG Care Plan, other US- based tools are available through the American Society of Clinical Oncology (www.asco.org) and the Journey Forward Program (www.JourneyForward.org). Other individual US institutions also report


12


developing and implementing Internet-based tools for creation of survivorship care plans, including the Fred Hutchinson Cancer Research Center, the Dana Farber Cancer Institute and the University of Colorado Cancer Center.28


The fact that most such Internet-based tools, to this author’s knowledge, are US-based, may signify that US providers are aware of a true deficit in survivorship care in this country, which may be worse than exists in some other parts of the world.


Current and Future Roles of Internet-based Survivorship Care Plans in the International Setting


Just as provision of survivorship information is in its early phases of development in many parts of the world, research regarding the best way to provide this information is as well. Several groups have studied the ways in which survivorship care plans may be best provided, and have found that, overall, the healthcare community appears receptive to the care plan concept.19


tools for creation of care plans;12,29


Survivors appear willing to use Internet-based over 90% of users of the LIVESTRONG


Recent data from other groups demonstrate that a balance between providing high-quantity, high-quality information and avoiding being overly technical and requiring excessive time is important in the design of Internet-based care plan tools.30


Care Plan report ‘good’ to ‘excellent’ levels of satisfaction with it, and over 80% report that they will share the generated plans with the healthcare team.12


The huge field of cancer survivorship research and understanding remains quite young at this point. Early data demonstrate that Internet- based tools for the creation of survivorship care plans may be useful, and may result in wide use and high levels of satisfaction worldwide. Based on data from use of one such tool, discrepancies in attention to survivorship issues appear to exist across the globe. Publicly available Internet-based survivorship care plans are one tool to reduce these discrepancies and to provide essential information to all cancer survivors worldwide. n


Christine Hill-Kayser is an Assistant Professor of Radiation Oncology at the University of Pennsylvania School of Medicine. Her clinical interests include paediatric oncology, breast cancer and survivorship care. She has dedicated a large amount of time to research associated with the LIVESTRONG Care Plan, and has presented her findings at numerous US and international meetings. In addition, she serves as a Section Editor for the Cancer Survivorship section of OncoLink.


Carolyn Vachani is an Oncology Advanced Practice Nurse at the University of Pennsylvania’s Abramson Cancer Center. She has worked in the areas of medical haematology and oncology, bone marrow transplant, clinical research, radiation therapy and staff development. In her role she serves as the nurse educator for OncoLink, the Penn Cancer Center’s award-winning cancer information website. She serves as the project leader in the development and maintenance of the LIVESTRONG Care Plan and has a strong interest in oncology survivorship care.


Margaret K Hampshire is the Managing Editor of OncoLink. Her entire career has been dedicated to oncology nursing. Her clinical experience spans both medical and radiation oncology. She leads all aspects of the management, planning and development services covering strategic planning, public relations and communications, editorial oversight, research and commercial support services and development, fundraising and grant-making. She is also responsible for the innovation and engagement of services from the private sector, non-profits and non-governmental organisations (NGOs) and the development of OncoLink ’s Global Health Initiatives.


James M Metz is an Associate Professor and Vice Chair of the Clinical Division of Radiation Oncology at the University of Pennsylvania School of Medicine, and Associate Director for Clinical Services and Programs at the Abramson Comprehensive Cancer Center. He specialises in treatment of gastrointestinal malignancies. His research interests include clinical application of photodynamic therapy as well as use of the Internet to provide cancer-related information. He serves as Editor in Chief of OncoLink.


EUROPEAN ONCOLOGY


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