Creation Of Survivorship Care Plans Research Articles

Worldwide Use of Internet-based Survivorship Care Plans

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 theOncoLinkcancer 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.

An Internet Tool for Creation of Cancer Survivorship Care Plans for Survivors and Health Care Providers: Design, Implementation, Use and User Satisfaction

BackgroundSurvivorship care plans have been recommended by the Institute of Medicine for all cancer survivors. We implemented an Internet-based tool for creation of individualized survivorship care plans. To our knowledge, this is the first tool of this type to be designed and made publicly accessible.Objective To investigate patterns of use and satisfaction with an Internet-based tool for creation of survivorship care plans.MethodsOncoLife, an Internet-based program for creation of survivorship care plans, was designed by a team of dedicated oncology nurses and physicians at the University of Pennsylvania. The program was designed to provide individualized, comprehensive health care recommendations to users responding to queries regarding demographics, diagnosis, and cancer treatments. After being piloted to test populations, OncoLife was made publicly accessible via Oncolink, a cancer information website based at the University of Pennsylvania which averages 3.9 million page views and over 385,000 unique visits per month. Data entered by anonymous public users was maintained and analyzed.Results From May 2007 to November 2008, 3343 individuals utilized this tool. Most (63%) identified themselves as survivors, but also health care providers (25%) and friends/family of survivors (12%). Median age at diagnosis was 48 years (18 - 100+), and median current age 51 (19 - 100+). Most users were Caucasian (87%), female (71%), and college-educated (82%). Breast cancer was the most common diagnosis (46%), followed by hematologic (12%), gastrointestinal (11%), gynecologic (9%), and genitourinary (8%). Of all users, 84% had undergone surgery, 80% chemotherapy, and 60% radiotherapy. Half of users (53%) reported receiving follow-up care from only an oncologist, 13% only a primary care provider (PCP), and 32% both; 12% reported having received survivorship information previously. Over 90% of users, both survivors and health care providers, reported satisfaction levels of “good” to “excellent” using this tool.ConclusionsBased on our experience with implementation of what is, to our knowledge, the first Web-based program for creation of survivorship care plans, survivors and health care providers appear both willing to use this type of tool and satisfied with the information provided. Most users have never before received survivorship information. Future iterations will focus on expanding accessibility and improving understanding of the needs of cancer survivors in the era of the Internet.

Utilization of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

Background Persons living after lung cancer remain an important subset of the cancer survivor population who may be at risk for serious health consequences of lung cancer and its treatments. The Institute of Medicine recommends survivorship care plans for all cancer survivors. Materials and Methods A program for the creation of survivorship care plans, OncoLife, was made publicly accessible. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence. Data were maintained anonymously with approval from the Institutional Review Board. Results From May 2007 to November 2008, 3343 individuals completed OncoLife surveys. Lung cancer survivors comprised 4% (n = 142), with a median age at diagnosis of 57 years and median current age of 59 years. Lung cancer survivors were 50% male and 83% Caucasian. Chemotherapy was used in the treatment of 78% of patients with lung cancer, radiation was used in 58%, and surgery was used in 38%. Most lung cancer survivors (62%) reported receiving follow-up care from only an oncologist, while 27% reported being monitored by a primary care provider (PCP) and an oncologist, and 6% saw only a PCP. Only 11% reported receiving survivorship information at the conclusion of therapy. Conclusion OncoLife represents the first Web-based program for the creation of survivorship care plans, and lung cancer survivors appear willing to use this type of tool. Most have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important.

Utilization of Internet-based survivorship care plans by survivors of gynecologic cancers

5592 Background: Survivors of gynecologic cancers may be at risk for cancer-related late-effects, including fatigue, pain, second malignancy risk, and sexual side effects. The Institute of Medicine has recommended survivorship care plans (SCP) for all cancer survivors. Methods: A program for creation of SCP, OncoLife, is publicly accessible through OncoLink ( www.oncolink.org ), serving over 3.9 million pages/month to 385,000 unique IP addresses (August 2008). Users responding to 17 queries regarding demographics, diagnosis, and treatment receive comprehensive, individualized guidelines for future care. User data is maintained anonymously and securely, with IRB approval. Results: From May 2007-November 2008, 3,343 individuals completed OncoLife surveys. Survivors of gynecologic cancers represented 8% (n = 272; 58% ovarian, 24% endometrial, 19% cervical). Median ages at diagnosis of ovarian, endometrial, and cervical cancer were 50, 51, and 35 yrs, respectively, and median current ages 53, 55, and 47. Surgery was undergone by 98% of ovarian, 97% of endometrial, and 81% of cervical cancer survivors, and chemotherapy/ radiotherapy by 91%/12%, 51%/59%, and 67%/67%, respectively. Known genetic syndromes were reported by 13% of ovarian cancer survivors, compared to < 1% of endometrial/ cervix cancer survivors (p = 0.0006). Of all gynecologic cancer survivors, 53% reported being followed by an oncologist, 14% a primary care provider (PCP), and 27% both. Only 7% had received survivorship information previously. Conclusions: Most survivors of gynecologic malignancies have undergone multimodality treatment and may particularly benefit from SCP guidelines. Most do not receive follow-up care from both an oncologist and PCP, and few have received survivorship information. Gynecologic cancer survivors appear willing to use this tool; future iterations will focus on further individualization of guidelines, and improving access to underrepresented populations. No significant financial relationships to disclose.

Utilization of internet-based survivorship care plans by breast cancer survivors.

Abstract Abstract #1122 Background: In the past three decades, the number of cancer survivors living in the United States has more than tripled (MMWR 2004). Survivors of breast cancer represent a large and important subset of this population, and remain at risk for late-effects such as heart disease and second malignancy (Harris 2006, Schaapveld 2008). Multiple groups have shown survivor care to be inadequate, and the Institute of Medicine has identified a need for survivorship care plans (SCP) for all cancer survivors. Here, we describe use patterns of the first personalized web-based SCP by breast cancer survivors.
 Methods: A program for creation of SCP, OncoLife , was made publicly accessible through OncoLink (www.oncolink.org), a website serving over 3.9 million pages/month to 385,000 unique IP addresses (Aug 2007) and based at the University of Pennsylvania. Data was maintained anonymously, and collection and analysis processes were reviewed by the institutional IRB. Users responded to queries regarding demographics, diagnosis, and treatment, and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence.
 Results: From 5/07-5/08, 2573 individuals completed OncoLife surveys. Users described themselves as cancer survivors (66%), family members/friends of survivors (12%) and healthcare providers (23%), and identified themselves as residents of 46 states and 15 countries. Median age at cancer diagnosis was 48 years (yrs) (range 18–100), and median current age 51 yrs (range 19– >100). Breast cancer survivors composed 45% of the population of OncoLife users (n=1164), and were predominantly female (96%), Caucasian (97%), and well-educated, with 81% having education beyond high school. Median age at breast cancer diagnosis was 47 yrs (range 18–93), and median current age 51 yrs (range 19-94). Nearly all breast cancer survivors (97%) had undergone surgery, while 75% were treated with radiation, and 85% intravenous chemotherapy (most commonly cyclophosphamide, doxorubicin, and/or taxols). Hormonal treatments were delivered to 66% of survivors, and trastuzumab to 11%. Of breast cancer survivors, 56% described receiving follow-up care only from an oncologist, 12% only from a primary care provider, and 30% from both. Only 14% of breast cancer survivors reported having ever before been offered information on survivorship care.
 Conclusions: OncoLife represents the first web-based program for creation of SCP, and patients and healthcare providers appear willing to use this type of tool. Most breast cancer survivors have undergone multimodality care, placing them at risk for late-effects. Most do not receive formal survivorship care information after active cancer therapy, so attention to survivor needs by the oncology community is important. Future versions of OncoLife will focus on expanding healthcare provider and Spanish versions, and increasing accessibility to underserved populations. Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 1122.

Failing to Plan Is Planning to Fail: Improving the Quality of Care With Survivorship Care Plans

The recent Institute of Medicine report "From Cancer Patient to Cancer Survivor: Lost in Transition" recommended the creation of survivorship care plans for patients as they complete primary therapy for cancer to ensure clarity for all involved about patients' diagnoses, treatments received, and surveillance plans. Any previously existing follow-up guidelines for cancer survivors have been largely restricted to surveillance for recurrence of the primary disease. An important message of the Institute of Medicine report is that survivorship care plans must surpass this and address the chronic effects of cancer (pain, fatigue, premature menopause, depression/anxiety), monitoring for and preventing late effects like osteoporosis, heart disease, and second malignancies, and promoting healthy lifestyles. It should explicitly identify the providers responsible for each aspect of ongoing care and provide information on resources available for psychosocial and other practical issues that may arise as a result of the prior cancer diagnosis. Although having some sort of a plan is clearly necessary to achieve high quality care, there are practical barriers to formal off-treatment consultations and the creation of written documents that may become part of the medical record. This article reviews the elements of the proposed survivorship care plan and discusses areas of research and development needed to make them part of standard oncology practice.