Impact of Internet-Based Cancer Survivorship Care Planson Health Care and Lifestyle Behaviors

Christine E. Hill-Kayser, MD1; Carolyn C. Vachani, RN, MSN, AOCN1; Margaret K. Hampshire, RN, BSN, OCN1;

Gloria Di Lullo, CRNP1; Linda A. Jacobs, PhD, RN2; and James M. Metz, MD1

BACKGROUND: 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. METHODS: 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. RESULTS: 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 emo-

tional 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. CONCLUSIONS: Survivorship care plans are useful vehicles with which to promote lifestyle and behavioral changes, and to

assist survivors with communication with health care providers. These findings support recommendations from the Institute of Medi-

cine and the American College of Surgeons Commission on Cancer. Cancer 2013;119:3854-60. VC 2013 American Cancer Society.

KEYWORDS: survivorship care plan, Internet, care plan tool, survivor care, long-term and late effects of cancer treatment.

INTRODUCTIONSurvivorship care plans (SCP) were first formally described by the Institute of Medicine (IOM) in From Cancer Patient toCancer Survivor: Lost in Transition, published in 2005.1 Since that time, several groups have mobilized to explore optimalmethods of the delivery of these documents, which are intended to be comprehensive, customized descriptions of theneeds of cancer survivors in a world of shrinking resources.2-7 Other groups have continued to document disparities in thecare of cancer survivors that support the need for these documents,8-13 and the American College of Surgeons Commis-sion on Cancer (CoC) has recently recommended that all cancer survivors receive a customized SCP at the time of comple-tion of active cancer treatment. This will be a requirement for institutional reaccreditation by the CoC beginning in theyear 2015.14

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 Nether-lands.15 Care plans are intended, based on the IOM’s description, to improve communication between health care pro-viders and survivors of cancer, and to provide information to survivors regarding possible late and long-term effects ofcancer and its treatments as well as age-appropriate health care and the social, economic, and emotional impacts of a can-cer diagnosis. However, to the best of our knowledge, no published data exist to address the question of whether care plansactually achieve these goals.

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; hill@uphs.upenn.edu

1Department of Radiation Oncology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania; 2Division of Oncology, Depart-

ment of Internal Medicine, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania

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.

DOI: 10.1002/cncr.28286, Received: March 15, 2013; Revised: May 30, 2013; Accepted: June 11, 2013, Published online August 6, 2013 in Wiley Online Library

(wileyonlinelibrary.com)

3854 Cancer November 1, 2013

Original Article

The LIVESTRONG Care Plan is an Internet-based,free, publically accessible tool that has been available forthe creation of SCPs since 2007.2 In this article, wedescribe the effectiveness of care plans generated usingthis tool with regard to health care knowledge and com-munication, lifestyle behaviors, and emotional impact.

MATERIALS AND METHODSThe LIVESTRONG Care Plan was developed in 2007and is available at www.livestrongcareplan.org. The toolwas developed and is maintained by a dedicated team ofoncology nurses and physicians, and consists of a series ofqueries regarding demographics, cancer diagnosis, andcancer treatments received. Voluntary completion of thesurvey results in the generation of individualized, detailed,comprehensive SCPs addressing surveillance recommen-dations for tumor recurrence in addition to guidelines foroverall health care in the setting of an increased risk of cer-tain morbidities secondary to cancer treatment. Theseguidelines have been designed to be specific to the types oftreatments that patients have received, as well as their pri-mary cancer diagnoses. Guidelines are based on the typeand site of surgical procedures, radiotherapy sites, andspecific drugs received. All survivors are provided with in-formation regarding second malignancies and other globalissues pertaining to cancer survivorship. Guidelines areevidence-based or consensus-based whenever possible,and are in concordance with guidelines provided by theChildren’s Oncology Group, the National Cancer Insti-

tute, and the American Society of Clinical Oncology. Inareas in which evidence-based or consensus-based guide-lines are not available, the guidelines provided are basedon practice at our own institution and with guidance fromthe LIVESTRONG Survivorship Center of ExcellenceNetwork. All guidelines provided as part of the care planhave been constructed with both nursing and physicianinput, and are described in plain language. Implementa-tion and design of the care plan tool has been described ingreater detail previously.2

Over the course of the 5 years since the launch of thecare plan tool, 9 versions have been created in sequentialorder. With the launch of version 7, a voluntary optionwas added for users to provide an e-mail address for fur-ther correspondence. Users who chose to provide thiswere then sent follow-up questionnaires via e-mail 4weeks after receipt of the electronic care plan. The follow-up questionnaire was designed to investigate user satisfac-tion with the information provided, the impact of the careplan on health care communication and behavior, itsemotional impact, and its impact on lifestyle behaviors.The questions included are further outlined in Tables 1and 2.

Data from each use of the care plan have beenmaintained anonymously on a secure server. Provisionof the e-mail address is completely voluntary, andusers receive a care plan regardless of whether theychoose to provide this information. Data collectionand maintenance procedures were approved by our

TABLE 1. User Responses to Follow-Up Queries Regarding User Feelings in Response to Receipt of theLIVESTRONG Internet-Based Survivorship Care Plan

Follow-Up Question Answer Choices % (No.)

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?

Excellent 27% (79)

Very good 48% (143)

Good 18% (54)

Fair 6% (19)

Poor 1% (3)

Did the care plan provide you with new information you had not previously

been provided with by a health care professional?

Yes 65% (186)

No 35% (102)

Did the care plan provide you with new information you had not previously

found on your own?

Yes 61% (180)

No 39% (115)

I think my plan provided: Too much information 2% (7)

Just enough information 62% (186)

Could use more information 27% (81)

Not enough information 4% (12)

I don’t know 4% (12)

How did you feel about the information you received? Empowered 7% (20)

A more informed survivor 72% (208)

Nothing new learned 18% (52)

Confused 1% (4)

Overwhelmed <1% (2)

Would you recommend the LIVESTRONG Survivorship Care Plan to

others?

Yes 94% (279)

No 6% (19)

Impact of Survivorship Care Plans/Hill-Kayser et al

Cancer November 1, 2013 3855

Institutional Review Board before the launch of thetool.

RESULTSBetween May 2010 and January 2013 (versions 7-9),8690 survivors completed the care plan questionnaire andreceived a care plan document. The median current age ofthe users was 52 years (range, 18 years-94 years), and theywere a median of 2.8 years (range< 1 year-40 years) fromthe time of their cancer diagnosis. Survivors of breast can-cer represented 42% of users, followed by survivors of he-matologic malignancies (12%), gastrointestinal cancers(11%), and genitourinary cancers (10%). Users were pri-marily residents of the United States (83%), followed byCanada (5%), Australia (3%), Great Britain (2%), and> 80 other countries.

Of the total user group, 875 (10%) voluntarily pro-vided an e-mail address for future contact and were sent afollow-up survey 1 month after receipt of the care plan.Of these, 298 users (34%) completed the survey. Thegroup of users completing the survey was similar to theoverall group with regard to sex (75% female vs 73%female; P 5 .5), age (median, 55 years vs 52 years), andUS residency (80% vs 81%; P 5 .8); however, the userscompleting the survey were more frequently white (93%vs 84%; P< .001) and college graduates (63% vs 55%;P 5 .001). Similar percentages of users in the 2 groupswere survivors of breast cancer (45% vs 42%; P 5 .3).Users in the 2 groups were similarly likely to be receivingfollow-up care from an oncologist (44% vs 46%), primarycare provider (12% vs 13%), both (37% vs 34%), or nei-ther (6% vs 5%) (P 5 .8). They also appeared to beequally likely to have received survivorship information

before receipt of the LIVESTRONG SCP (16% vs 12 %;P 5 .2).

Overall, users completing the follow-up survey ratedthe information provided by the plan as excellent, verygood, or good in 93% of cases (n 5 276). They reportedthat the plan provided information that had not been pre-viously provided by health care providers in 62% of cases(n 5 186), and that they had not found independently in61% of cases (n 5 180). Users were queried regardingtheir feelings about the information provided in the plan,both with regard to the level of information provided andthe emotional impact of the information. Overall, 62%(n 5 186) reported that the plan provided “just enoughinformation,” whereas 27% reported that it “could usemore information.” Only 2% and 4% of users, respec-tively, believed that the plan included too much informa-tion or not enough information. The majority of users(72%) believed that the emotional impact of the plan waslimited to making them feel more informed as survivors,although 7% reported feeling empowered, 1% felt con-fused, and < 1% felt themselves to be overwhelmed orscared by the information. Overall, 94% of respondentsreported that they would recommend the care plan toother users. User feelings regarding the care plan are fur-ther outlined in Table 1. Of the users who rated the infor-mation provided as “fair” or “poor” (22 users; 7%), themajority reported that they did not find it to be new com-pared with other information provided by health care pro-viders (14 users; 64%) or information foundindependently (15 users; 68%). This subset of usersappeared more likely to report that the plan “could usemore information” (9 users; 41%) or provided “notenough information” (4 users; 18%) (P 5 .02) compared

TABLE 2. Impact of Survivorship Care Plans on Health Care Participation and Communication According toUsers of the LIVESTRONG Care Plan

Follow-Up Question Answer Choices % (No.)

Has the information in the care plan made you change

the way you participate or plan to participate in your

health care?

Yes 61% (173)

No 39% (111)

Did you share your results with any member of your

health care team?

Yes 26% (77)

No 74% (221)

If yes, did the care plan help with communication

between you and your health care provider(s)?

(N 5 82)

Yes 80% (66)

No 20% (16)

If no, why not? (N 5 230) I did not think they would care 17% (39)

It was too long 3% (8)

I did not feel the information was relevant to my current care 20% (48)

I did not want to upset or anger them 3% (7)

Other: I had not seen them yet or am still in the midst of treatment 56% (128)

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3856 Cancer November 1, 2013

with the population reporting higher overall satisfaction.Most demographics did not appear to differ significantlybetween the 2 groups, with the group reporting less satis-faction with the information being 82% female (18 users;P 5 .2) and 90% white (20 users; P 5 .9), with a medianage of 51 years, and 54% of whom (12 users) were survi-vors of breast cancer (P 5 .07). However, the group thatappeared to be less satisfied with the information con-sisted entirely of college graduates (P< .001).

Users were next queried regarding the impact of thecare plan on their health care behavior and communica-tion with the existing health care team. Approximately61% of users reported that the care plan changed the waythey participated or planned to participate in their ownhealth care, prompting them to be more active and morelikely to discuss concerns with their health care team. Atthe time of the 1-month follow-up survey, 25% of usershad shared the plan with their health care team (32% witha primary care provider, 43% with an oncologist, and20% with a nurse or nurse practitioner), and 80% of thesereported that the care plan had helped to improve com-munication between themselves and their health care pro-viders. Of the 230 users who did not share the plan withtheir health care providers, 55% reported that the reasonfor this was that they had not seen a physician in themonth since receipt of the plan. Survivors who were per-sonally less satisfied with the SCP, rating the informationas “fair” or “poor,” were less likely to share the informa-tion with the health care team (20 patients [90%]reported planning to share it). Other reasons for not shar-ing 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 teamwould not care about the care plan (17%). Further detailsregarding the interface of the care plan and the health careteam are outlined in Table 2.

Finally, users were queried regarding the personalimpact of the SCP on their lives. Overall, 92% of usersreported that the care plan increased their knowledge ofthe possible long-term and late effects of their cancer and84% reported that the care plan improved their knowl-edge of what medical tests should be done as part of thefollow-up care for their cancer (Fig. 1). Greater than one-half (54%) of users reported that they had made orplanned to make lifestyle behavior changes as a result ofthe care plan; of those who chose to share these changesvia the free text, the majority reported dietary modifica-tion and increased exercise (Fig. 2).

DISCUSSIONThe vital role of SCPs in the care of cancer survivors hasbecome increasingly clear over the past decade, with theIOM and CoC now endorsing the use of care plans for allsurvivors. Although several groups previously have out-lined this need in the medical literature,1,4,7,8 to the bestof our knowledge the current study is the first descriptionof the impact of care plans on survivors’ behaviors, inter-actions with health care providers, and emotions.

The LIVESTRONG Care Plan is the most widelyused tool for the creation of SCPs reported in the medicalliterature,16 and is free and publically accessible. Thefollow-up survey discussed herein was completed by only

Figure 1. User responses to follow-up questions regarding the impact of an Internet-based survivorship care plan on their perso-nal knowledge of the risks of late effects and needed medical testing are shown. A total of 298 users responded to eachquestion.

Impact of Survivorship Care Plans/Hill-Kayser et al

Cancer November 1, 2013 3857

3% of overall users; however, the results demonstratedthat the majority of users were highly satisfied with the in-formation that was provided to them. This is consistentwith what we have reported previously from the immedi-ate surveys that are performed when the SCP is deliv-ered.2,16,17 The majority of users reported that theinformation provided was “very good” or “excellent,” andthat the information received was new compared with in-formation provided by health care providers or from pre-vious independent sources. These data support theassertions of the IOM that cancer survivors do not rou-tinely receive all the needed information in the absence ofan SCP, and that care plans are an essential part of com-prehensive survivorship health care.1

The care plans provided by the LIVESTRONGCare Plan tool are intended to be comprehensive andtherefore are quite long; however, only 2% of usersreported feeling that the plans provided too much infor-mation, and the vast majority (79%) felt themselves to beeither more informed or empowered by the information

that they received. In fact, the small group of 22 users whoreported lower satisfaction with the SCP in generalappeared to desire more information and to believe thatthe information provided did not add greatly to informa-tion they already had. These data support the notion thatinformation is helpful to survivors of cancer, and thatdetailed SCPs are viable vehicles through which it can beprovided. We no longer practice in a paternalistic age ofmedicine when certain information may have been with-held “for the good of the patient.” In fact, modern cancersurvivors appear to desire detailed information regardinglate and long-term effects, and to have positive feelings,rather than feeling scared or overwhelmed, when providedwith this information. To this end, the vast majority ofpersons who received a care plan as part of this studyreported that they would recommend it to someone else.

SCPs are intended to serve as a conduit between can-cer survivors and their multiple health care providers. Sur-vivors may receive suboptimal care compared with theirage-matched controls without a previous cancer diagnosis,

Figure 2. Lifestyle modifications prompted by an Internet-based survivorship care plan are shown. Answers were obtained viafree text offered to any user responding “yes” to the question “As a result of your LIVESTRONG Survivorship Care Plan, did youmake or do you plan to make any changes in lifestyle behaviors?” (N 5 152).

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and this has been well-documented in the literature.8,12,13

Although the reasons behind this deficiency in care are inall likelihood multifold, some appear to be due to mis-communication among health care providers and betweensurvivors and their health care providers. As an example,the responsibility for obtaining a colonoscopy for a survi-vor of breast cancer may be assumed by many, or no, pro-viders. An oncologist following the patient after breastcancer may assume that the primary care provider willorder tests unrelated to breast cancer, but the patient maynot routinely see such a provider16 and even if she does,the primary care provider may assume that the oncologistis managing cancer screening. Even more complex is thedelegation of responsibility for tests, such as bone densitytests, that are related both to breast cancer survivorshipand the normal aging process. Practitioners recognize thatthere are many barriers in the modern health care para-digm to determining who is responsible for or has takenthe responsibility for follow-up care. These include elec-tronic medical records that do not interface with oneanother, insurance complications, and the ever-shrinkingresource of time. The one constant in the care of a cancersurvivor is the survivor himself or herself. By providingthe survivor with the resources to know which tests needto be ordered in the form of a written document, an SCPenables the survivor to take more control of his or her careand to participate in minimizing the “slip-through-the-cracks” phenomenon. The data presented in the currentstudy demonstrate that SCPs have potential to accomplishthis goal, with 61% of users of this SCP reporting achange in their personal participation in their health careas a result of the care plan. In the month after receipt ofthe plan, 25% had shared it with their health care team,with another 55% planning to do so at the next appoint-ment, and 80% reported an improvement in communica-tion as a result. Survivors also reported that having a careplan increased their knowledge of late and long-termeffects (92%) and of which medical tests should beincluded in their care (84%). Overall, these results sup-port the essential role of SCPs in improving communica-tion and the knowledge base of cancer survivors, and alignwith assertions from the IOM and CoC.

Along with the education provided by SCPs regard-ing health care needs and behaviors is that regardinghealthy living. Smoking, obesity, and poor diet areclearly linked to the risk of cancer recurrence, the devel-opment of other cancers, and other comorbidities. Thecurrent study data also demonstrate that SCPs canprompt changes in modifiable risk factors. Greater thanone-half of the respondents to this survey reported mak-

ing or planning to make lifestyle changes, with the mostcommon of these being changes in diet and increasingexercise, as a result of an SCP.

There are limitations to the current study. TheLIVESTRONG Care Plan is a free, publically accessibletool, accessed by a convenience sample that is subject toinherent bias. In addition, there is selection bias becauseonly a small percentage of users of the SCP chose to pro-vide their e-mail address and complete the follow-up sur-vey. However, this ratio of respondents is consistent withsurvey response rates to other Internet-based tools, and isimproved compared with most paper mail surveys.18

The current study specifically demonstrates theimpact of the LIVESTRONG Care Plan on survivors ofcancer. Other survivorship plans and templates, includingthe American Society of Clinical Oncology Cancer Treat-ment Summaries, Journey Forward, What’s Next? LifeAfter Cancer Treatment, and Prescription for Living areavailable and endorsed by the American Cancer Society(cancer.org/treatment/survivorshipduringandaftertreat-ment/survivorshipcareplans/index). Assuming these plansalso deliver information based on the recommendationsof the IOM, a similar positive effect of these plans on can-cer survivors should be expected. A national effort cur-rently is underway to support the provision of SCPs to allcancer survivors to ensure rapid and reliable delivery of in-formation to them and their health care providers. Furtherstudies on the impact of SCPs will certainly be warrantedonce these processes are streamlined, and should focusparticularly on satisfaction from underrepresented minor-ity groups and persons with less formal education.

Herein, we presented what to our knowledge is thefirst study of metrics related to the use of SCPs and theirimpact on health care communication and knowledge,lifestyle, and emotions. Overall, users receiving a SCP aresatisfied with the information that they receive, and arewilling to share it with health care providers. The major-ity of survivors participating in the current studyreported improved communication with their health careteam, improved health-related knowledge, and positivelifestyle changes resulting from the care plan. Theseresults fully support recommendations from the IOMand the CoC that all survivors of cancer receive a SCP,and indicate a positive overall impact of the LIVE-STRONG Care Plan tool.

FUNDING SUPPORTThis project was supported by institutional funds, with supportfrom an educational grant from the LIVESTRONG Foundation.

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Cancer November 1, 2013 3859

CONFLICT OF INTEREST DISCLOSURESThe authors made no disclosures.

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