Carolyn Vachani

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

Background Survivorship 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. Methods OncoLife, 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. Conclusions Based 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.

High Level Use and Satisfaction with Internet‐Based Breast Cancer Survivorship Care Plans

To the Editor: Breast cancer survivors remain a prominent subset of the survivor population, and may be at risk for myriad late effects associated with breast cancer diagnosis and treatments. In 2005, the Institute of Medicine recommended that all survivors be provided with a survivorship care plan (SCP), or a document summarizing possible late effects of treatment, as well as recommended follow-up care, at the completion of cancer treatment (1). This recommendation has been supported by both the oncology and primary care provider (PCP) communities (2). In May, 2007, we launched the first Internet-based tool for creation of SCP, available at http://www.live strongcareplan.org and via OncoLink (http://www. oncolink.org), a cancer information website based at the University of Pennsylvania. The tool consists of queries regarding demographics, cancer diagnoses, and cancer treatments received, and provides users with comprehensive, individualized survivorship care plans. Details of the care plan format, design, and implementation have been previously described (3). Following piloting and initial launch of the tool, breast cancer survivors were observed to be prominent within the user population, and particular attention was given to data-driven improvement of care plans created for breast cancer survivors. Data collection procedures were approved by the Institutional Review Board. Between 5 ⁄ 07 and 10 ⁄ 09, 8717 care plans were created, 48% (n = 4,021) by or for breast cancer survivors. Mean age at diagnosis was 48.5 years (median 48, range, 18–85), and mean current age 51.6 years (median 52, range, 19–89). Mean time since diagnosis was 3 years (median 2 years, range <1 year–39). Breast cancer survivors using this tool were mostly Caucasian (89%, n = 3565) and well-educated, with 83% (n = 3,333) having attended at least some college. These findings are consistent with those of other groups who have demonstrated that women, particularly those who are younger, Caucasian, and highly educated, are likely to utilize the Internet to seek information about breast cancer (4–7). Certainly, increasing accessibility to under-served populations is a priority. To this end, we have created a Spanish version of the tool; in addition, within our own institution and at several others, nursing staff complete care plans for patients when they complete treatment. Finally, we are hopeful that our partnership with the Lance Armstrong Foundation will promote awareness of the care plan tool. Even amongst this apparently highly motivated survivor group, the presence of survivorship information from resources other than this tool appears scarce: breast cancer survivors reported having received previous dedicated survivorship information in only 12% of cases (n = 408); of 411 breast cancer survivors queried, 17% (n = 68) reported knowing of established survivorship programs at their own cancer centers (Fig. 1). Of 3,348 breast cancer survivors who were queried regarding current follow-up care, 47% reported receiving follow-up care only from an oncologist, 10% only a PCP, 39% both, and 3% neither. Recognized late effects of breast cancer and its treatments are broad in nature; some, such as recurrence and second cancer risk, are clearly of an oncologic nature. Others, such as cardiac dysfunction and osteopenia, fall within a gray zone. While the optimal approach

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.

The utilization of oncology web-based resources in Spanish-speaking Internet users.

ObjectivesThere currently are few web-based resources written in Spanish providing oncology-specific information. This study examines utilization of Spanish-language oncology web-based resources and evaluates oncology-related Internet browsing practices of Spanish-speaking patients. MethodsOncoLink (http://www.oncolink.org) is the oldest and among the largest Internet-based cancer information resources. In September 2005, OncoLink pioneered OncoLink en español (OEE) (http://es.oncolink.org), a Spanish translation of OncoLink. Internet utilization data on these sites for 2006 to 2007 were compared. ResultsVisits to OncoLink rose from 4,440,843 in 2006 to 5,125,952 in 2007. OEE had 204,578 unique visitors and 240,442 visits in 2006, and 351,228 visitors and 412,153 visits in 2007. Although there was no time predilection for viewing OncoLink, less relative browsing on OEE was conducted during weekends and early morning hours. Although OncoLink readers searched for information on the most common cancers in the United States, OEE readers most often search for gastric, vaginal, osteosarcoma, leukemia, penile, cervical, and testicular malignancies. Average visit duration on OEE was shorter, and fewer readers surveyed OEE more than 15 minutes (4.5% vs. 14.9%, P < 0.001). ConclusionsSpanish-speaking users of web-based oncology resources are increasingly using the Internet to supplement their cancer knowledge. Limited available resources written in Spanish contribute to disparities in information access and disease outcomes. Spanish-speaking oncology readers differ from English-speaking readers in day and time of Internet browsing, visit duration, Internet search patterns, and types of cancers searched. By acknowledging these differences, content of web-based oncology resources can be developed to best target the needs of Spanish-speaking viewers.

Survivorship after lower gastrointestinal cancer: Patient-reported outcomes and planning for care

There is significant need for quality follow‐up care to optimize long‐term outcomes for the growing population of lower gastrointestinal (GI) cancer survivors. Patient‐reported outcomes (PROs) provide valuable information regarding late and long‐term effects (LLTEs).

Feasibility Study of an Electronic Interface Between Internet-Based Survivorship Care Plans and Electronic Medical Records

PURPOSE Survivorship care plans (SCPs) are recommended for all cancer survivors. Myriad barriers to implementation exist. This study was performed to evaluate the feasibility of interface development between an SCP and an electronic medical record (EMR). METHODS An information technology application was developed to extract data from the EMR in use at our center (Epic). Data were transferred to autopopulate an Internet-based tool for creation of SCPs (LIVESTRONG Care Plan) that had been previously used for the creation of more than 35,000 plans. RESULTS Data (demographic characteristics, surgeries, chemotherapy drugs, radiation site) were extracted from the EMR and transferred to the care plan platform, without transfer of protected health information. Care plans were created and transferred back to the EMR. During clinical testing, SCPs were created by nurse practitioners during scheduled clinic visits for 146 sequential, eligible patients (67% breast cancer, 33% colorectal cancer). All patients received completed care for a single cancer diagnosis at our institution. All data points that were automatically populated were reviewed by practitioners, and missing/blank data fields were populated manually when necessary. Data entered into generated care plans were accurate in 97% of audited cases, and the process of care plan generation could be completed in < 1 minute. CONCLUSION This is a feasible solution for the autopopulation of SCPs from the EMR. It represents a future methodology through which widespread implementation of SCPs may be undertaken. Future directions include further clinical testing, assessment of provider-perceived usefulness, and integration into routine clinical care.

Survivorship and the chronic cancer patient: Patterns in treatment-related effects, follow-up care, and use of survivorship care plans

The survivorship needs of patients living with chronic cancer (CC) and their use of survivorship care plans (SCPs) have been overlooked and underappreciated.

Worldwide Use of Internet-based Survivorship Care Plans

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. Particularly since that time, the available literature has expanded dramatically with regard to recognition of unmet needs of cancer survivors. 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, and others have found survivors to be at increased risk of infertility, unemployment and anxiety/depression. Cancer survivors in the US report rarely receiving survivorship information to address these issues. Although the modern era of cancer care is accompanied by increasing recognition of needs during the survivorship phase of a cancer diagnosis, the healthcare community is faced with great obstacles to providing this care.

Survivorship after treatment of pancreatic cancer: insights via an Internet-based survivorship care plan tool

Pancreatic cancer survivors face a unique set of challenges in survivorship, yet structured survivorship care planning is lacking in practice. Survivorship care plans (SCPs) are an essential part of quality cancer care and can facilitate the transition following active treatment; the use of SCPs in pancreatic cancer survivors, however, has not been explored. With a convenience sample of 117 pancreatic cancer survivors and proxies who used an Internet-based SCP tool, we examined treatment details, patient-reported outcomes, and survivorship practices. Thirty-one percent of survivors were 2 years or greater from diagnosis with a median current age of 62 years. Most patients had received multimodality therapy (67%): 68%, 86%, and 43% reported surgical intervention, intravenous chemotherapy, and radiation therapy for their pancreatic cancer, respectively. Survivors commonly reported fatigue, cognitive change, neuropathy, pancreatic insufficiency, and chronic radiation dermatitis related to treatment. Most survivors are managed (47%) or co-managed (35%) by an oncology specialist; however, this percentage decreases over time with consequent increase in management by primary care providers alone. Only 5% had previously been offered an SCP. Of the 24 users who responded to a follow-up satisfaction survey, 83% indicated they would share the SCP with their healthcare team although half of respondents felt it should include more information. In all, our results demonstrate that there is a population of pancreatic cancer survivors who exist and seek survivorship support although structured survivorship care planning is lacking in practice. SCPs have a potentially valuable role for these survivors via communication of treatment-related effects and coordination across multidisciplinary healthcare teams. Further development and evaluation of SCPs is needed for this underserved survivor population.

Patient-reported outcomes in head and neck cancer: prospective multi-institutional patient-reported toxicity

Purpose Head and neck cancer is occurring in an increasingly younger patient population, with treatment toxicity that can cause significant morbidity. Using a patient guided, Internet-based survivorship care plan program, we obtained and looked at patterns of patient-reported outcomes data from survivors seeking information after treatment for head and neck cancer. Methods The Internet-based OncoLife and LIVESTRONG Care Plan programs were employed, which design unique survivorship care plans based on patient-reported data. Care plans created for survivors of head and neck cancer were used in this evaluation. Demographics, treatment modality, and toxicity were included in this evaluation. Toxicity was further analyzed, grouped into system-based subsets. Results A total of 602 care plans were created from self-identified head and neck cancer survivors, from which patient-reported outcome data were attained. A majority of patients were Caucasian (96.2%) with median age at diagnosis of 55 years, living in suburban locations (39.9%), with ~50% receiving care within 20 miles of their residence. There was an equal distribution of education levels from high school only to graduate school. The majority of patients received care through cancer centers (96.7%), with a split between academic and non-academic centers. Ninety-three percent of patients had radiation therapy as part of their treatment modality, with 70.3% having chemotherapy and 60.1% having surgery. The most common system toxicities affected the oropharynx, followed by epithelium (skin/hair/nail), and then general global health. Specifically, the most common side effects were difficulty swallowing (61.5%) and changes in skin color/texture (49.7%). One third of patients experienced hearing/tinnitus/vertigo, xerostomia, loss of tissue flexibility, or fatigue. Conclusion The current work demonstrates the ability to obtain patient-reported outcomes of head and neck cancer survivors through an Internet-based survivorship care plan program. For this group dysphagia and dermatitis were the most commonly reported toxicities, as was expected; however, global effects of therapy, such as fatigue, were also significant and should be addressed in future survivorship planning.