Supportive Oncology Worldwide Use of Internet-based Survivorship Care Plans Christine Hill-Kayser,1 Carolyn Vachani,2 Margaret K Hampshire3 and James M Metz4


1. Assistant Professor, Department of Radiation Oncology; 2. Oncology Advanced Practice Nurse, Abramson Cancer Center; 3. Managing Editor, OncoLink, Abramson Cancer Center; 4. Associate Professor, and Vice Chair, Clinical Division, Department of Radiation Oncology and Associate Director, Clinical Services and Programs, Abramson Cancer Center, University of Pennsylvania School of Medicine


Abstract


Over the past decade, the world has demonstrated an increased interest in and awareness of the unique needs of cancer survivors. Survivorship care plans are a communication tool intended to provide guidelines for the healthcare of survivors as they complete active cancer care, and for the duration of their lives. The Internet represents a unique way to communicate with cancer survivors, and data from several groups indicate that increasing numbers of survivors both desire information about their care and seek this information on the Internet. A handful of US-based groups have developed Internet-based tools for the creation of survivorship care plans. The first of these, the LIVESTRONG Care Plan (www.livestrongcareplan.org), is available via the OncoLink cancer information website based at the University of Pennsylvania. Data from the first three years since the launch of this tool demonstrate increasing use by survivors from nearly every continent, with international users accounting for 16% of total users. Data from these users also demonstrate wide variability with regard to receipt of previous survivorship information and treatment summaries based on location of residence. This variation emphasises the vital role that Internet-based survivorship care plans may continue to play in the care of survivors worldwide.


Keywords Survivorship care plan, cancer survivor, Internet, cancer-associated late effects, long-term effects, treatment summary, survivor


Disclosure: The authors have no conflicts of interest to declare. Acknowledgement: This work is supported in part by the Lance Armstrong Foundation. Received: 19 March 2010 Accepted: 30 July 2010 Citation: European Oncology, 2010;6(2):10–3 Correspondence: Christine Hill-Kayser, 3400 Spruce Street, 2 Donner Building, Philadelphia, PA 19146, US. E: hill@uphs.upenn.edu


International Recognition of the Unique Needs of Cancer Survivors Over the past five years, the important role of survivorship care plans for all cancer survivors has been formally recognised. In the US, recommendations from the Institute of Medicine in 2005 that all patients completing active cancer care be provided with a survivorship care plan were a major part of this impetus.1


Particularly since that time, the


available literature has expanded dramatically with regard to recognition of unmet needs of cancer survivors.2–11


Cancer survivors remain at


risk of recognised late effects of treatment related to surgeries, chemotherapies and radiation; in addition, several groups have demonstrated that cancer survivors may not receive appropriate surveillance for recurrent disease and/or age-appropriate screening for other illnesses,5–7 of infertility,11


and others have found survivors to be at increased risk unemployment2–4


and anxiety/depression.1,9 Cancer


survivors in the US report rarely receiving survivorship information to address these issues.12


Although the modern era of cancer care is


accompanied by increasing recognition of needs during the survivorship phase of a cancer diagnosis,13


the healthcare community is faced with great obstacles to providing this care.


First, the majority of cancer survivors living in the US and worldwide are over 60 years of age.14


Simply as a result of the healthcare risks


associated with normal ageing, cancer survivors often have or are at risk of serious co-morbidities and require complex care. Most of them do not appear to ultimately receive routine follow-up care from both


10


oncologists and primary care providers,12


and the onus for providing


comprehensive care – including cancer follow-up care and care for general health – often falls on one provider. Second, providers may not be fully aware of which or how many healthcare providers a given patient receives care from; this may result in aspects of care being neglected because one provider assumes the other will attend to them, and vice versa. Although different healthcare systems worldwide are faced with varied limitations and obstacles, a universal factor appears to be a need for increased communication among healthcare providers and between healthcare providers and survivors.


The Essential Role of Survivorship Care Plans A survivorship care plan is primarily a tool for improved communication. Ideally, survivors should be provided with care plans at the time of completion of active cancer therapy, or during active therapy if this course is protracted or indefinite. Survivorship care plans should be individualised, and should be based on as many factors as possible that may affect an individual’s future health; these may include, but are not limited to, cancer diagnosis, age, health behaviours, demographic features and cancer treatments received. Survivorship care plans should then address as many long-term risks and healthcare concerns as possible, while also providing guidelines for surveillance for cancer recurrence, screening and care for age-related illness and resources for care for infertility and psychosocial concerns.1


This information may


serve both to facilitate communication and to empower survivors to ensure that they receive complete care. Data accrued and published by


© TOUCH BRIEFINGS 2010


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