Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors
Christine E. Hill-Kayser MD,
Department of Radiation Oncology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania
Corresponding author: Christine Hill-Kayser, MD, Department of Radiation Oncology, Perelman School of Medicine at the University of Pennsylvania, 3400 Civic Center Blvd, 2nd Fl West, Philadelphia, PA 19104; Fax: (215) 349-5445; email@example.com
This article was presented in part at the International Symposium on Supportive Care in Cancer; June 29-30, 2012; New York, NY and at the American Society for Radiation Oncology 54th Annual Meeting; October 28-31, 2012; Boston, MA.
Survivorship care plans (SCP) are currently recommended by the Institute of Medicine, and will soon be required for accreditation by the American College of Surgeons Commission on Cancer. To the best of the authors' knowledge, the impact of SCPs on cancer survivors has not been previously reported.
In 2007, the authors created an Internet tool for the creation of SCPs that provides customized guidelines for survivorship care. Users are sent a voluntary follow-up survey 1 month after initial use.
From May 2010 through January 2013, 8690 cancer survivors used the SCP tool. The most common diagnoses were breast (45%), hematologic (12%), and gastrointestinal (11%) cancers; the median age of the survivors was 51 years. Of these, 875 (10%) respondents provided information for future electronic contact and 298 responded to a 1-month follow-up survey. They reported that the information provided was “good” to “excellent” in 93% of cases, and new in 65% of cases. With regard to the emotional impact of the SCP, 62% of responding survivors believed that it provided “just enough” information, 72% felt “more informed,” and 94% believed they would recommend it to others. The majority of respondents (63%) thought that the SCP changed their health care participation, and 80% shared/planned to share it with their health care team. Of those survivors who had done so, 80% reported that it improved communication with their health care providers. Greater than one-half of survey users (54%) reported that they had made or planned to make a lifestyle change in response to the SCP, most commonly dietary modification and increased exercise.
Survivorship care plans (SCP) were first formally described by the Institute of Medicine (IOM) in From Cancer Patient to Cancer Survivor: Lost in Transition, published in 2005. Since that time, several groups have mobilized to explore optimal methods of the delivery of these documents, which are intended to be comprehensive, customized descriptions of the needs of cancer survivors in a world of shrinking resources.[2-7] Other groups have continued to document disparities in the care of cancer survivors that support the need for these documents,[8-13] and the American College of Surgeons Commission on Cancer (CoC) has recently recommended that all cancer survivors receive a customized SCP at the time of completion of active cancer treatment. This will be a requirement for institutional reaccreditation by the CoC beginning in the year 2015.
To the best of our knowledge, no metrics currently exist regarding the impact of care plans on cancer survivors, although a randomized trial investigating their impact on patient-reported outcomes currently is underway in the Netherlands. Care plans are intended, based on the IOM's description, to improve communication between health care providers and survivors of cancer, and to provide information to survivors regarding possible late and long-term effects of cancer and its treatments as well as age-appropriate health care and the social, economic, and emotional impacts of a cancer diagnosis. However, to the best of our knowledge, no published data exist to address the question of whether care plans actually achieve these goals.
The LIVESTRONG Care Plan is an Internet-based, free, publically accessible tool that has been available for the creation of SCPs since 2007. In this article, we describe the effectiveness of care plans generated using this tool with regard to health care knowledge and communication, lifestyle behaviors, and emotional impact.
MATERIALS AND METHODS
The LIVESTRONG Care Plan was developed in 2007 and is available at www.livestrongcareplan.org. The tool was developed and is maintained by a dedicated team of oncology nurses and physicians, and consists of a series of queries regarding demographics, cancer diagnosis, and cancer treatments received. Voluntary completion of the survey results in the generation of individualized, detailed, comprehensive SCPs addressing surveillance recommendations for tumor recurrence in addition to guidelines for overall health care in the setting of an increased risk of certain morbidities secondary to cancer treatment. These guidelines have been designed to be specific to the types of treatments that patients have received, as well as their primary cancer diagnoses. Guidelines are based on the type and site of surgical procedures, radiotherapy sites, and specific drugs received. All survivors are provided with information regarding second malignancies and other global issues pertaining to cancer survivorship. Guidelines are evidence-based or consensus-based whenever possible, and are in concordance with guidelines provided by the Children's Oncology Group, the National Cancer Institute, and the American Society of Clinical Oncology. In areas in which evidence-based or consensus-based guidelines are not available, the guidelines provided are based on practice at our own institution and with guidance from the LIVESTRONG Survivorship Center of Excellence Network. All guidelines provided as part of the care plan have been constructed with both nursing and physician input, and are described in plain language. Implementation and design of the care plan tool has been described in greater detail previously.
Over the course of the 5 years since the launch of the care plan tool, 9 versions have been created in sequential order. With the launch of version 7, a voluntary option was added for users to provide an e-mail address for further correspondence. Users who chose to provide this were then sent follow-up questionnaires via e-mail 4 weeks after receipt of the electronic care plan. The follow-up questionnaire was designed to investigate user satisfaction with the information provided, the impact of the care plan on health care communication and behavior, its emotional impact, and its impact on lifestyle behaviors. The questions included are further outlined in Tables 1 and 2.
Table 1. User Responses to Follow-Up Queries Regarding User Feelings in Response to Receipt of the LIVESTRONG Internet-Based Survivorship Care Plan
Now that you have had time to review the information provided to you by the care plan program, how would you rate the information provided to you?
Did the care plan provide you with new information you had not previously been provided with by a health care professional?
Did the care plan provide you with new information you had not previously found on your own?
I think my plan provided:
Too much information
Just enough information
Could use more information
Not enough information
I don't know
How did you feel about the information you received?
A more informed survivor
Nothing new learned
Would you recommend the LIVESTRONG Survivorship Care Plan to others?
Table 2. Impact of Survivorship Care Plans on Health Care Participation and Communication According to Users of the LIVESTRONG Care Plan
Has the information in the care plan made you change the way you participate or plan to participate in your health care?
Did you share your results with any member of your health care team?
If yes, did the care plan help with communication between you and your health care provider(s)? (N = 82)
If no, why not? (N = 230)
I did not think they would care
It was too long
I did not feel the information was relevant to my current care
I did not want to upset or anger them
Other: I had not seen them yet or am still in the midst of treatment
Data from each use of the care plan have been maintained anonymously on a secure server. Provision of the e-mail address is completely voluntary, and users receive a care plan regardless of whether they choose to provide this information. Data collection and maintenance procedures were approved by our Institutional Review Board before the launch of the tool.
Between May 2010 and January 2013 (versions 7-9), 8690 survivors completed the care plan questionnaire and received a care plan document. The median current age of the users was 52 years (range, 18 years-94 years), and they were a median of 2.8 years (range < 1 year-40 years) from the time of their cancer diagnosis. Survivors of breast cancer represented 42% of users, followed by survivors of hematologic malignancies (12%), gastrointestinal cancers (11%), and genitourinary cancers (10%). Users were primarily residents of the United States (83%), followed by Canada (5%), Australia (3%), Great Britain (2%), and > 80 other countries.
Of the total user group, 875 (10%) voluntarily provided an e-mail address for future contact and were sent a follow-up survey 1 month after receipt of the care plan. Of these, 298 users (34%) completed the survey. The group of users completing the survey was similar to the overall group with regard to sex (75% female vs 73% female; P = .5), age (median, 55 years vs 52 years), and US residency (80% vs 81%; P = .8); however, the users completing the survey were more frequently white (93% vs 84%; P < .001) and college graduates (63% vs 55%; P = .001). Similar percentages of users in the 2 groups were survivors of breast cancer (45% vs 42%; P = .3). Users in the 2 groups were similarly likely to be receiving follow-up care from an oncologist (44% vs 46%), primary care provider (12% vs 13%), both (37% vs 34%), or neither (6% vs 5%) (P = .8). They also appeared to be equally likely to have received survivorship information before receipt of the LIVESTRONG SCP (16% vs 12 %; P = .2).
Overall, users completing the follow-up survey rated the information provided by the plan as excellent, very good, or good in 93% of cases (n = 276). They reported that the plan provided information that had not been previously provided by health care providers in 62% of cases (n = 186), and that they had not found independently in 61% of cases (n = 180). Users were queried regarding their feelings about the information provided in the plan, both with regard to the level of information provided and the emotional impact of the information. Overall, 62% (n = 186) reported that the plan provided “just enough information,” whereas 27% reported that it “could use more information.” Only 2% and 4% of users, respectively, believed that the plan included too much information or not enough information. The majority of users (72%) believed that the emotional impact of the plan was limited to making them feel more informed as survivors, although 7% reported feeling empowered, 1% felt confused, and < 1% felt themselves to be overwhelmed or scared by the information. Overall, 94% of respondents reported that they would recommend the care plan to other users. User feelings regarding the care plan are further outlined in Table 1. Of the users who rated the information provided as “fair” or “poor” (22 users; 7%), the majority reported that they did not find it to be new compared with other information provided by health care providers (14 users; 64%) or information found independently (15 users; 68%). This subset of users appeared more likely to report that the plan “could use more information” (9 users; 41%) or provided “not enough information” (4 users; 18%) (P = .02) compared with the population reporting higher overall satisfaction. Most demographics did not appear to differ significantly between the 2 groups, with the group reporting less satisfaction with the information being 82% female (18 users; P = .2) and 90% white (20 users; P = .9), with a median age of 51 years, and 54% of whom (12 users) were survivors of breast cancer (P = .07). However, the group that appeared to be less satisfied with the information consisted entirely of college graduates (P < .001).
Users were next queried regarding the impact of the care plan on their health care behavior and communication with the existing health care team. Approximately 61% of users reported that the care plan changed the way they participated or planned to participate in their own health care, prompting them to be more active and more likely to discuss concerns with their health care team. At the time of the 1-month follow-up survey, 25% of users had shared the plan with their health care team (32% with a primary care provider, 43% with an oncologist, and 20% with a nurse or nurse practitioner), and 80% of these reported that the care plan had helped to improve communication between themselves and their health care providers. Of the 230 users who did not share the plan with their health care providers, 55% reported that the reason for this was that they had not seen a physician in the month since receipt of the plan. Survivors who were personally less satisfied with the SCP, rating the information as “fair” or “poor,” were less likely to share the information with the health care team (20 patients [90%] reported planning to share it). Other reasons for not sharing the plan with a health care provider were that the user did not believe that it was relevant to their current care (20%) or the user was concerned that the health care team would not care about the care plan (17%). Further details regarding the interface of the care plan and the health care team are outlined in Table 2.
Finally, users were queried regarding the personal impact of the SCP on their lives. Overall, 92% of users reported that the care plan increased their knowledge of the possible long-term and late effects of their cancer and 84% reported that the care plan improved their knowledge of what medical tests should be done as part of the follow-up care for their cancer (Fig. 1). Greater than one-half (54%) of users reported that they had made or planned to make lifestyle behavior changes as a result of the care plan; of those who chose to share these changes via the free text, the majority reported dietary modification and increased exercise (Fig. 2).
The vital role of SCPs in the care of cancer survivors has become increasingly clear over the past decade, with the IOM and CoC now endorsing the use of care plans for all survivors. Although several groups previously have outlined this need in the medical literature,[1, 4, 7, 8] to the best of our knowledge the current study is the first description of the impact of care plans on survivors' behaviors, interactions with health care providers, and emotions.
The LIVESTRONG Care Plan is the most widely used tool for the creation of SCPs reported in the medical literature, and is free and publically accessible. The follow-up survey discussed herein was completed by only 3% of overall users; however, the results demonstrated that the majority of users were highly satisfied with the information that was provided to them. This is consistent with what we have reported previously from the immediate surveys that are performed when the SCP is delivered.[2, 16, 17] The majority of users reported that the information provided was “very good” or “excellent,” and that the information received was new compared with information provided by health care providers or from previous independent sources. These data support the assertions of the IOM that cancer survivors do not routinely receive all the needed information in the absence of an SCP, and that care plans are an essential part of comprehensive survivorship health care.
The care plans provided by the LIVESTRONG Care Plan tool are intended to be comprehensive and therefore are quite long; however, only 2% of users reported feeling that the plans provided too much information, and the vast majority (79%) felt themselves to be either more informed or empowered by the information that they received. In fact, the small group of 22 users who reported lower satisfaction with the SCP in general appeared to desire more information and to believe that the information provided did not add greatly to information they already had. These data support the notion that information is helpful to survivors of cancer, and that detailed SCPs are viable vehicles through which it can be provided. We no longer practice in a paternalistic age of medicine when certain information may have been withheld “for the good of the patient.” In fact, modern cancer survivors appear to desire detailed information regarding late and long-term effects, and to have positive feelings, rather than feeling scared or overwhelmed, when provided with this information. To this end, the vast majority of persons who received a care plan as part of this study reported that they would recommend it to someone else.
SCPs are intended to serve as a conduit between cancer survivors and their multiple health care providers. Survivors may receive suboptimal care compared with their age-matched controls without a previous cancer diagnosis, and this has been well-documented in the literature.[8, 12, 13] Although the reasons behind this deficiency in care are in all likelihood multifold, some appear to be due to miscommunication among health care providers and between survivors and their health care providers. As an example, the responsibility for obtaining a colonoscopy for a survivor of breast cancer may be assumed by many, or no, providers. An oncologist following the patient after breast cancer may assume that the primary care provider will order tests unrelated to breast cancer, but the patient may not routinely see such a provider and even if she does, the primary care provider may assume that the oncologist is managing cancer screening. Even more complex is the delegation of responsibility for tests, such as bone density tests, that are related both to breast cancer survivorship and the normal aging process. Practitioners recognize that there are many barriers in the modern health care paradigm to determining who is responsible for or has taken the responsibility for follow-up care. These include electronic medical records that do not interface with one another, insurance complications, and the ever-shrinking resource of time. The one constant in the care of a cancer survivor is the survivor himself or herself. By providing the survivor with the resources to know which tests need to be ordered in the form of a written document, an SCP enables the survivor to take more control of his or her care and to participate in minimizing the “slip-through-the-cracks” phenomenon. The data presented in the current study demonstrate that SCPs have potential to accomplish this goal, with 61% of users of this SCP reporting a change in their personal participation in their health care as a result of the care plan. In the month after receipt of the plan, 25% had shared it with their health care team, with another 55% planning to do so at the next appointment, and 80% reported an improvement in communication as a result. Survivors also reported that having a care plan increased their knowledge of late and long-term effects (92%) and of which medical tests should be included in their care (84%). Overall, these results support the essential role of SCPs in improving communication and the knowledge base of cancer survivors, and align with assertions from the IOM and CoC.
Along with the education provided by SCPs regarding health care needs and behaviors is that regarding healthy living. Smoking, obesity, and poor diet are clearly linked to the risk of cancer recurrence, the development of other cancers, and other comorbidities. The current study data also demonstrate that SCPs can prompt changes in modifiable risk factors. Greater than one-half of the respondents to this survey reported making or planning to make lifestyle changes, with the most common of these being changes in diet and increasing exercise, as a result of an SCP.
There are limitations to the current study. The LIVESTRONG Care Plan is a free, publically accessible tool, accessed by a convenience sample that is subject to inherent bias. In addition, there is selection bias because only a small percentage of users of the SCP chose to provide their e-mail address and complete the follow-up survey. However, this ratio of respondents is consistent with survey response rates to other Internet-based tools, and is improved compared with most paper mail surveys.
The current study specifically demonstrates the impact of the LIVESTRONG Care Plan on survivors of cancer. Other survivorship plans and templates, including the American Society of Clinical Oncology Cancer Treatment Summaries, Journey Forward, What's Next? Life After Cancer Treatment, and Prescription for Living are available and endorsed by the American Cancer Society (cancer.org/treatment/survivorshipduringandaftertreatment/survivorshipcareplans/index). Assuming these plans also deliver information based on the recommendations of the IOM, a similar positive effect of these plans on cancer survivors should be expected. A national effort currently is underway to support the provision of SCPs to all cancer survivors to ensure rapid and reliable delivery of information to them and their health care providers. Further studies on the impact of SCPs will certainly be warranted once these processes are streamlined, and should focus particularly on satisfaction from underrepresented minority groups and persons with less formal education.
Herein, we presented what to our knowledge is the first study of metrics related to the use of SCPs and their impact on health care communication and knowledge, lifestyle, and emotions. Overall, users receiving a SCP are satisfied with the information that they receive, and are willing to share it with health care providers. The majority of survivors participating in the current study reported improved communication with their health care team, improved health-related knowledge, and positive lifestyle changes resulting from the care plan. These results fully support recommendations from the IOM and the CoC that all survivors of cancer receive a SCP, and indicate a positive overall impact of the LIVESTRONG Care Plan tool.
This project was supported by institutional funds, with support from an educational grant from the LIVESTRONG Foundation.