ORIGINAL ARTICLE

Exploring the use of the survivorship consult in providingsurvivorship care

David Wiljer & Sara Urowitz & Jennifer Jones &

Ashley Kornblum & Scott Secord & Pamela Catton

Received: 28 August 2012 /Accepted: 11 February 2013 /Published online: 2 March 2013# Springer-Verlag Berlin Heidelberg 2013

AbstractPurpose Advances in breast cancer treatment have increasedsurvival and contributed to longer periods of survivorship asreported by the Committee CCSsS (Canadian Cancer Statis-tics) (2011) and Hewitt et al. (2005), increasing the relevanceof survivorship care. Survivorship care includes encouragingsurvivors to acquire the knowledge, skills and confidence tomanage their life, as well as engaging survivors through post-diagnosis disease self-management and self-care strategies.The Survivorship Consult (SC) was designed to help survi-vors reflect on their needs, establish goals and create an actionplan.Methods Twenty-six breast cancer survivors who participat-ed in the SC at Princess Margaret Cancer Centre took part insemi-structured interviews to assess the survivor experienceand effectiveness of the SC. Data from these interviews

were coded, and themes were identified using a modifiedgrounded theory approach.Results Themes that emerged regarding the experience andeffectiveness of the SC included (1) the supportive experienceof collaborative dialogue with supportive care clinicians (i.e.nurses, social workers, occupational therapists, etc.), (2) thedevelopment of personalized goals that motivated individualsto implement recommendations, (3) an enhanced understand-ing of their health condition, team and options, (4) an im-proved ability to identify needs and (5) an increased sense ofconfidence to manage issues related to care.Conclusions The assessment of the SC improved the expe-rience of breast cancer patients by providing a supportiveenvironment where they could feel cared about, by increas-ing understanding of their condition and its treatment, byimproving communication with the care team and by moti-vating patients to manage care issues. Further research isneeded on survivors who conduct the SC before the treat-ment phase of their cancer trajectory.

Keywords Cancer care . Survivorship . Engagement .

Survivorship consult

Introduction

Breast cancer (BCa) is the most common cancer amongwomen, estimating 23,600 new cases of BCa diagnosed inCanada during 2011 [1]. Although it remains the secondleading cause of cancer mortality among women, mortalityrates have been on the decline, and the 5-year survival rate iscurrently over 80 % [1]. According to the National CancerInstitute, a cancer survivor (CS) is an individual diagnosedwith cancer of any type, current or past, who is still living[2]. Given that incidence rates are increasing and overall

D. Wiljer (*)Centre for Addiction and Mental Health,33 Russell St. Room 2063A,Toronto, ON M5S2S1, Canadae-mail: david.wiljer@camh.ca

D. Wiljer : S. Urowitz : J. Jones :A. Kornblum : S. Secord :P. CattonPrincess Margaret Hospital, University Health Network,Toronto, Canada

D. Wiljer : P. CattonDepartment of Radiation Oncology, University of Toronto,Toronto, Canada

D. Wiljer : S. Urowitz : J. JonesDepartment of Psychiatry, University of Toronto,Toronto, Canada

S. SecordDepartment of Social Work, University of Toronto,Toronto, Canada

Support Care Cancer (2013) 21:2117–2124DOI 10.1007/s00520-013-1760-4

survival is improving, it is expected that the number of BCasurvivors will continue to grow [2].

BCa survivors are at risk for cancer recurrence, secondarycancers, lymphedema, premature menopause, poor bonehealth, weight gain, fatigue, cardiovascular disease, cognitiveimpairments and emotional distress following treatment[3–16]. These negative effects can manifest themselves dur-ing, shortly after or well after treatment, and they may beshort-term or long-term chronic conditions and, therefore,can impact any phase of survivorship. These effects may beameliorated through a range of medical procedures as well asbehavioural and lifestyle changes that require patients to takean active role in managing their own health and wellness[17–19]. Many CSs indicate that their emotional needs areoften a neglected part of standard clinical care [20]. Otherconcerns such as sexuality, intimacy and vocational concernsmay become more prominent as acute treatment ends, andthese concerns should also be addressed with appropriate re-ferrals [21]. Advancements in treatment and increases in sur-vival contribute to longer periods of survivorship, contributingto the growing number of CSs. Therefore, new strategiesaimed to improve the quality and coordination of post-diagnosis survivorship care in BCa survivors are needed.

At Princess Margaret Cancer Centre (PMCC), survivorshipcare is provided through the Breast Cancer Survivorship Pro-gram (BCSP). The BCSP aims to improve survivorship man-agement by promoting patient empowerment and activeparticipation in and management of one’s own care. Survivorsare introduced to the BCSP through the Survivorship Consult(SC), which is a 1-h, self-reflective interview. The initial SC isusually conducted during the first visit to the BCSP and in-volves a review of the survivors’ understanding of their BCatrajectory to date, the treatments received and proposed, theiravailable support systems and their survivorship needs andgoals. The overall aim of this consultation is to help thesurvivors reflect on individual needs and priorities and devel-op an individualized action plan that best meets their physical,social, emotional and spiritual needs at all phases of theirjourney. Engaging survivors early on in this process is doneto empower survivors to take a more active role in theirtreatment. Engagement in self-management strategies mayhelp to prevent and better address the under met psychosocialneeds reported by cancer patients.

Preliminary studies demonstrated that the SC has the po-tential to impact positively on the experiences of BCa survi-vors. A preliminary pre-/post-test study established anincrease in self-efficacy scores as a result of the SC, usingthe Cancer Behaviour Inventory 2.0 (CBI) [22]. The revisedCBI 2.0 is a 14-item questionnaire that measures self-efficacyfor coping with cancer, specifically with respect to the initialtreatment phase of the cancer continuum [23]. Although thiswork is preliminary and needs to be followed by a randomizedcontrol trial (RTC) before we can reach definitive conclusions

about its impact, the SC appears to be having an importantimpact on the survivor experience and on survivor activationin their own care. In addition, the SC has also been shown tobe conducted in a cost-effective manner utilizing structured,standardized clinical assessment and electronic documenta-tion system [24]. This templated reporting system guiding theSC is divided into sections that enable the healthcare providerto systematically determine the survivors’ perception of theircancer experience and identify their unique physical, psycho-logical, spiritual, and social needs. The clinical practice ofinterviewing and treating survivors has revealed that there isan interconnection between psychological issues, copingstyles, support systems and capacity to manage a disease likeBCa [25, 26]; however, the critical role of the patient in takingan active role in these interventions and long-term care issueshas yet to be investigated.

As the SC has demonstrated promise in improving theability and confidence of BCa survivors to manage theircare, there is still a need to understand the optimal imple-mentation and its impact on the delivery of survivorshipservices. The purpose of this study was to explore thesurvivor experience and impact of the SC through semi-structured interviews in order to improve the usefulnessand effectiveness of the SC in a clinical setting.

Objectives

The primary objective of this study is to evaluate the SC. TheSC was developed to help survivors reflect on their diagnosis,treatment, goal setting and survivorship care plan. This reflec-tion is thought to better inform the survivor about their healthcondition, and treatment options, as well as help them identifytheir survivorship needs so that they may be motivated topursue resources and services to help them manage issuesrelated to their care. This study aimed to explore participantexperiences in engaging in a collaborative dialogue with asupportive care clinician (i.e. nurses, social workers, occupa-tional therapists, etc.) and identify the impact of the SC on thesurvivor’s perceived confidence in managing their care.

Methods

Study design

The current study qualitatively explored the experiences ofsurvivors who participated in the SC using individual semi-structured interviews.

Participants

BCa survivors scheduled for a SC at the BCSP at the PMCCwere approached over a 6-month period to participate in the

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interview. Potential participants were included if they had adiagnosis of BCa and were fluent in English. Eligibilitycriteria were broad to include a wide range of perspectives,reflecting the patient population who participated in SCs.

Recruitment

Initial contacts with participants were made by the SC clinicianat the time of the SC using purposive samplingmethods. If theyexpressed interest in the interview, the research associate (RA),who has Masters level training in psychology and has institu-tional research training including good clinical research prac-tices, called the participant to explain the study and obtainconsent. Twenty-six participants were interviewed of the 35who agreed to participate. Participants were interviewed within2 weeks following their SC. Nine participants originally agreedto the interview but could not be reached for the interview. Thisstudy was approved by the University Health Network Re-search Ethics Board.

Survivorship consult

The SC is a 1-h self-reflective interview, structured based oncombined elements of the City of Hope survivorship framework[27], the IOM 2006 Lost in Transitions and several diseasemanagement frameworks [2, 28–30]. It is designed to helpsurvivors reflect on their diagnosis, treatment and strategiesfor coping, and to address their needs for information, educationand support. It is conducted by a supportive care clinician,usually a social worker, nurse or psychologist. The SC has beendesigned to be delivered in inter-professional practices andclinicians from each of these disciplines are trained to deliverthe SC. These clinicians are part of a Survivorship Clinic, andthey do not replace the role of the core clinical team. Theclinicians are dedicated staff in the Survivorship Clinic, andthey refer the patient back to the treatment team to address anytreatment related issues.

Based on individual needs, goals and priorities, the sur-vivor and clinician collaborate to develop an individualizedplan that will meet the physical, social, emotional and spir-itual needs of the survivor. This is done through a collabo-rative process with a supportive care clinician and thesurvivor using eCancer as the primary tool that allows forstandardizing the SC, as well as providing consistent resourcesto survivors. eCancer is an online platform for synopticreporting which generates the clinic note for the survivor’schart in real time. The SC is a series of online forms whichlive and are delivered to supportive care clinicians providingSC through the eCancer platform. During an SC, the supportivecare clinician is able to populate the fields of the appropriate SCform, summarize the survivor’s treatment history and creates anatural language clinic note in real time. Using this tool,survivors are provided with appropriate support, education

and information that they can incorporate throughout theirtreatment. If possible, the Consult is provided from the pointof diagnosis, 3–6 months into treatment and long after active-treatment has finished (approximately 1 year). These timepoints correspond with periods of change and uncertainty alongthe trajectory of care and SC at these times serves as animportant guide and reinforcement of self-managementthroughout the trajectory. Survivors are given the option tohave additional, more frequent 30-min follow-up SC, evenafter they are 1 year post-treatment.

Semi-structured interview

Within 2 weeks of the SC, participants took part in individualsemi-structured interviews to discuss the experience and im-pact of the SC. Semi-structured interview questions were de-veloped based on previously conducted studies, a review ofour evaluation data, and close consultations with the cliniciansinvolved in delivering the interviews. Semi-structured ques-tions helped interviewers probe key areas; questions included“How did your discussion with the clinician affect your under-standing of your diagnosis and health condition?”, “What werethe needs that you identified during the SC? Needs within thephysical, psychosocial, spiritual and emotional domains?” and“Did you find that the goals or plans that you thought of duringthe SC were realistic and applicable to your life?”. Additionalquestions regarding the structure and format of the SC wereasked, such as “How useful did you find the information?Regarding your diagnosis, treatments and support systems?”,“Is there anything that could have been done to make you feelmore comfortable?” and “What were your expectations of theconsult?”. Interviews were conducted by the RA over thetelephone and lasted approximately 30 min.

Data analysis

Interviews with participants were audio-recorded and tran-scribed. Transcripts were analyzed using a thematic approachand grounded theory techniques were employed. During theinterview process, interview transcripts were reviewed by theteam, and the interview guide was modified to further probeemerging themes in subsequent interviews. During the initialreview of transcripts, the preliminary coding schema wasdeveloped by the RA and a senior member of the teamindependently. The schema was refined throughout the anal-ysis in consultation with the research team. Interviews werecoded (by key terms and phrases) and sorted by theme (parentand subtheme), using a constant comparison method [31] toachieve an accurate representation of the survivor experiencewith the SC. The themes were refined based on group discus-sion with several members of the research team.

Data analysis was completed independently by two dif-ferent members of the research team (AK and MS). An

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additional two members of the team (DW and SU) reviewedall themes evaluated the coding categories to ensure that themeaning and intent of the participant comments were cap-tured accurately. NVivo version 8.2 software was used tofacilitate the coding and sorting process.

Results

Study participants

All of the participants were female (100 %), and the majorityhad completed university or college (65.4 %) and spokeEnglish as their first language (73.1 %), with the remaininghaving first spoken Farsi, Cantonese, Slovak and Polish(23.1 %). All survivors were fluent and felt comfortablereceiving health information in English (100 %). Ten(38.5 %) participants received a single modality of treatment(usually surgery), and 16 (61.5 %) participants received com-bined modality treatment. The largest group of participantswas in the age range between 55–64 years (42.3 %). (Table 1)

Core themes

Six major themes were identified through an analysis of thedata, each with several sub-themes. The themes were clas-sified as: (1) a collaborative dialogue with clinicians createsa supportive experience, (2) development of personalizedgoals motivated individuals to implement recommendations,(3) SC provided survivors with an enhanced understandingof their health condition, team and options, (4) SC helpedparticipants identify needs, (5) positive impact on survivors’sense of confidence to manage issues related to care and (6)preferred scheduling of the SC varied widely (see Table 2for representative quotes).

Theme 1: a collaborative dialogue with clinicians createsa supportive experience

Participants indicated that by engaging in collaborative dia-logue with the clinician regarding their health condition, itmade them feel more supported and cared about, especiallyduring the time when their treatment was complete andmany felt ‘forgotten about’. Many participants reported thatthe SC was a place for them to express their feelings, spendtime reflecting on their health condition and consider lifeissues that had not been addressed. Participants expressedthe feelings of anguish and distress when they sought outmedical attention because they felt that their physicians andhealthcare team did not have enough time for them. Theyreported that the SC was a place where they felt individuallysupported because they were able to speak with the clinicianand considered their time together valuable.

Some participants felt that they did not have enough time toengage fully in a collaborative discussion with the clinicianand felt too rushed. The effectiveness of using eCancer as aninterface to creating a survivorship care plan (results reportedin another manuscript) was helpful for some participants withtheir feelings of ‘being rushed’ by providing structure andkeeping the clinician and participant more focused on theconversation, while others thought that the standardized ap-proach contributed to the feeling of being rushed.

Theme 2: development of personalized goals motivatedindividuals to implement recommendations

Participants reported feeling comfortable sharing their opinionand discussing aspects of their health condition and trajectoryof care with the clinician. Participants were able to reflect ontheir diagnosis, treatment and strategies for carrying out theirgoals and were motivated to implement the recommendationsgiven to them by the clinician. Participants reported encoun-tering certain barriers that prevented them from taking chargein managing their own care, such as difficulties prioritizingand having other family responsibilities.

Table 1 Demographic and disease characteristics for interviewedbreast cancer survivors

Number Percentage

Age 25

35–44 5 19.2 %

45–54 6 23.1 %

55–64 11 42.3 %

65+ 3 11.5 %

Gender 26

Female 26 100 %

Male 0 0 %

Education 25

High school 3 11.5 %

Technical/vocational school 1 3.8 %

University/college 17 65.4 %

Graduate studies 3 11.5 %

Post-graduate studies 1 3.8 %

English as a first language 25

Yes 19 73.1 %

No 6 23.1 %

English fluency 26

Yes 26 100 %

No 0 0 %

Treatment 25

Chemotherapy 1 3.8 %

Surgery 9 34.6 %

Chemo, radiation and surgery 6 23.1 %

Combination of any 2 3 11.5 %

Combination of different 3 or more 6 23.1 %

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Table 2 Representative quotations form themes important in understanding the use of the SC

Theme Representative Quotations

A collaborative dialogue with clinicianscreates a supportive experience

“…you kind of get an abandonment feeling toward the end [of treatment]when nobody is watching us as closely as they were. I would need some helpwith that. [The clinician] told me about…resources which I’ll pursue.”

“You take the time…That’s the most important thing. We get rushed through by the doctors.Every appointment, it’s in and out. The nurse, the student doctor, all come in alreadyknowing everything. It’s understandable, they have so many people. It’s nice to be ableto sit back and talk with [the clinician].”

“I thought it was because of time and I am not saying this as a criticism to the clinician…when we went through [the clinician] was kind of ticking them before I said that’s thegoal…I thought I was being told these were my goals…time issue…”

“I found [the clinician] very easy to talk to…[the clinician] had that sort of personality…was engaging and came across as being interested. That’s important.”

Development of personalized goalsmotivated individuals to implementrecommendations

“…that encourages me quite a lot to seek out the program and find out more about it…”

“I think it’s just basically trying to figure out coordinating things with my schedule…it’s just a matter of trying to find time to do things when stuff is available to me…it’s just a matter of me trying to manage my time properly, that’s basically it.”

SC provided survivors with anenhanced understanding of theirhealth condition, team and options

“…I had a better understanding about who I could turn to for what because it is a littleconfusing…you do end up having several different doctors, several different peoplewho are nurses…it sort of guided me in the right direction…”

“I learned about my cancer, about my stage, [the clinician] helped me understand that a little bit better.I wasn’t sure whether that changed with the treatment and [the clinician] helped me understand…”

“It verified some things…what to expect after some of the treatments, effects on my body,like the exhaustion. I was telling [the clinician] some of the things I was experiencing…”

“…I already have a pretty good understanding of my diagnosis. I don’t think[the clinician] could have really told me anything that I didn’t already know.”

SC helped participants identify needs “…we went beyond cancer…[talked about] work stresses and return to work…somehelp you can get for return to work strategies before you get into that…”

“…fatigue is a huge issue so [the clinician] mentioned that…I was complaining that Iwas somewhat brain dead…[the clinician] mentioned…good recommendations…”

“There’s a lot of confusion about taking care of yourself and how best to do it…Nutrition I feel like is a big one that was not covered.”

“We talked about groups and clubs, always looking for speakers and that type ofthing. I think [the clinician] had a clear understanding of where I was comingfrom at that point. [The clinician] really addressed that…”

Positive impact on survivors’ senseof confidence to manage issuesrelated to care

“I felt, emotionally, that I was stronger and that I have a lot of sources that I cango and follow. I can finish this journey.”

“I felt very empowered actually.”

“…it could be helpful to you and it could make you feel in charge of what you have to do.”

“I just find that everything was so helpful and relaxed. I felt so relaxed. I didn’t feellike a typical, sort of, doctor’s appointment. It felt like at this point, there was hope.”

“…the opportunities in the community for helping different areas…really good to knowthat they’re out there…I feel like it’s important to know that they’re there…a lot ofpatients do want to use those support systems.”

Scheduling of Survivorship Consult “Hard to say because when you’re first diagnosed you may be overwhelmed. Everythingis so quick because they want to treat it as quickly as possible, so it’s hard to schedule…”

“I don’t know what would be the right time…you are very emotional when you getdiagnosed, and you’ve got a lot of questions…before you start surgery, that youhave this opportunity to do this up front to understand what was going on. But youdon’t know how emotional you will be throughout this whole process…”

“…close to the beginning of the journey…that’s when there are a lot of questions about what’sit going to be like to live on chemo, what’s it going to be like to go through radiation, howtired am I going to be, do I have to quit work, do I need help with my children…”

“In the beginning I had a lot of attention, I had the oncology nurse, the doctors,everybody, appointments, appointments.. constant attention…now at the endof my treatment I’m not getting that attention so this came at a great time for me.”

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Theme 3: SC provided survivors with an enhancedunderstanding of their health condition, team and options

Participants stated that the SC reinforced their understand-ing of their health condition and increased their awarenessof whom to ask or turn to for help although they had anadequate understanding prior to the SC. Participants be-lieved the SC provided abundant and useful informationresources available to support their health condition andtreatment options and reported that it enhanced their under-standing and awareness about their diagnosis and treatmentoptions. As many participants were satisfied with theamount of information regarding their health condition pro-vided in the SC, some indicated that the SC would havebeen more useful to them if it was conducted at a differenttime in their cancer journey. There were a number of par-ticipants who had sufficient knowledge regarding theirhealthcare team, health condition and treatment options.These participants found the SC to be too repetitive andreported no change in their level of understanding.

Additionally, a few participants had vague notions aboutthe purpose of the SC. Participants believed it was a groupsession or a lymphedema clinic and/or questioned their pres-ence. Overall, these participants stated that more emphasis onthe purpose of the SC was needed in order for the SC to beeffective amongst all participants and should be conducted atthe appropriate phase in their cancer care trajectory.

Theme 4: SC helped participants identify needs

The SC helped participants to identify needs in the physical,psychosocial and emotional domains. Many participants wereunsure of their additional needs other than standard medicalcare. Participants expressed their needs for sufficient supportin the psychosocial domain and expressed the need for help incoping with their emotions accompanying their illness, treat-ment and further care. Some participants experienced worry,fear for the future, inability to make plans, uncertainty, aban-donment, feeling burdensome and apprehension regardingchanges in their day-to-day living. Participants discussed the-se emotional stresses of living with cancer with the clinicianand addressed their need to speak to someone about it or findalternate forms of support. Several participants experiencedsubstantial stress concerning their inability to return to work orability to deal with new problems that resulted from theirreduced employment and income. This was expressed to theclinician and participants reported the SC helped them findinformation and advice regarding how to properly managetheir current situation.

Participants addressed their physical needs as an obstacle tomanaging their disease, health andwell-being. Issues regardinghow to handle their fatigue and lymphedema were reported.Through the SC, the clinician provided recommendations and

resources for them to utilize. The need for assistance to findresources that would help with changing their health behav-iours, such as becoming more physically active was reportedby participants. Nutrition was identified as an area not ade-quately covered by the consult. Interest in seeking out addi-tional information regarding the support services available fortheir emotional and social support was expressed. Throughdiscussion with the clinician and participation in the SC, par-ticipants were able to address their need for additional infor-mation education and support.

Theme 5: positive impact on survivors’ sense of confidenceto manage issues related to care

Participants reported the SC helped them become more incharge of managing their own care by providing them withthe resources, information and the organizational skills thatthey thought necessary to help them through their cancerjourney. Participants reported feeling more empowered andhopeful. After participating in the SC, participants felt morerelaxed and had a better understanding of what to expectthroughout cancer care. Participants also mentioned thatdiscussions with the clinician gave them more assurance toutilize the resources and support services available to them.

Theme 6: scheduling of survivorship consult

The scheduling of the SC at the proper time during thetrajectory their cancer care was found to be extremely impor-tant. Participants acknowledged that the scheduling of the SCis completely dependent on the individual and should bescheduled when the patient is physically and emotionallyready. Many participants were towards the end of their treat-ment and were already well-informed about their diagnosisand treatment options because they had already experienced it;spoken to other healthcare professionals; or had already donethe research themselves. A majority of the participants men-tioned if the consult was held at the beginning of their cancerjourney, they would have found it much more useful. A mainsuggestion was that the best time for the consult to take placeis after surgery and before adjuvant treatment. A few partici-pants suggested that the SC be scheduled immediately afterdiagnosis before the surgery takes place so that future survi-vors could be adequately prepared for the entire cancer jour-ney. Some participants were very grateful that the SCwas heldafter treatment because of the need for further attention andsupport after their treatment had finished.

Discussion

Results of this study suggest that BCa survivors found theSC useful in developing goals and being able to identify and

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overcome the psychosocial and physical concerns that existed.As a result of participating in the SC, participants reported animprovement in their sense of confidence that they couldpotentially act on recommendations. This enhanced sense ofconfidence could be related to increased access to resources,information and the organizational skills that they thoughtnecessary to help them through their cancer journey. As aresult, participants reported being able to plan goals for them-selves and were motivated to implement these goals. Thisstudy clarified the findings of our previous studies and dem-onstrated that the focus on empowerment was essential forparticipants. This empowerment is achieved through informa-tion, the development of a plan and identifying appropriateservices. In addition, the study identifies the importance of aSC service in helping patients to develop a sense of hope. Thishope is strongly related to knowing that support and servicesare available to address an individual’s issues or concerns.

By engaging in a collaborative discussion with the clini-cian, participants felt supported and cared about, and comfort-able discussing life goals, which in the long term is importantfor the development of a successful survivorship care plan.The goal planning reported in the current study required acollaborative relationship between the survivor and clinician.A similar study recently showed the collaborative relationshipencouraged survivors to become more engaged andempowered to achieve their personal goals of care [32]. Thecollaboration and mutual determination of this plan informsand enables survivors, which contribute to better coordinationof care [33]. This study also identified a potential issue inusing a standardized, technology-based approach. Participantscan potentially have the perception that their personal goalshave been predetermined. The experience must be a person-alized one, and the format and technology cannot predeter-mine or dictate the outcome or conversation during the SC.

An increased sense of confidence to carry out the behavioursnecessary to reach a desired goal is a key component in self-management skills, which have been shown to be effective inimproving clinical outcomes [34]. There have been an increas-ing expectation for CSs to participate and manage their owncare [34] and a growing number of studies that focus on in-terventions that encourage survivors to do so [22, 35–38]. Areview of the literature on self-management strategieshighlighted the importance of incorporating self-managementstrategies to enable and empower patients in taking control oftheir own care [33]. Moreover, the benefits of self-managedcare have been reported in a number of other chronic diseasepopulations where patients who are more engaged in their carehave had better health outcomes [3–6, 27, 39].

Participants reported issues with stress, depression, sleep-lessness, fear and lack of skills in making decisions about howto resume a normal-but-altered life, which is consistent withthe content from CS literature [21, 34]. Participants identifiedneeds such as more information about illness, treatments,

services and nutrition; help coping with emotions accompa-nying their illness and treatment; help in managing disruptionsin work; and financial advice. The SC was effective inassisting participants to identify their needs in most areasand provide educational support.

The delivery (one-on-one), timing (1 h) and content of theSC were reported as excellent. For most participants, the SCwould be most useful at the time of diagnosis, immediatelyafter surgery, rather than later in the care trajectory. The phaseof the cancer care trajectory set the context for how useful theSC was to each participant. Some participants took part in theSC later in their cancer journey (years after treatment) and hadalready received an abundance of information regarding theirhealth condition and available resources. However, these par-ticipants reported the SC would have helped them by provid-ing the resources, information and the organizational skillsthat they deemed essential to assist them at the beginning oftheir cancer care journey. Importantly, these findings contrib-ute to the understanding of the optimal implementation andimpact on the delivery of survivorship services of preliminarySC intervention research [22]. Clinicians should work collab-oratively with patients to determine the optimal time fordelivering the SC and identifying the appropriate follow-uptimes, in any are required.

There were several limitations to this study. A proportion ofwomen conducted the SC later in their cancer care trajectoryand had already lived through the treatment and post-treatment phases. Generalizability of findings is limited topredominantly white, well-educated sample of cancer partic-ipants, and the impact of the SC on diverse groups requiresstudy. The purpose of the SC was to aid with the developmentof the SC, improving survivorship management by promotingpatient engagement and empowerment throughout their entirecancer care trajectory. It is difficult to assess the effectivenessof the SC aimed to assist throughout the entire trajectory if it isnot conducted at the appropriate time.

Conclusion

The assessment of the SC improved the experience of breastcancer patients by creating a supportive environment forthem to feel heard and cared about, by increasing under-standing of the condition and its treatment, by improvingcommunication with the care team, by increasing self-efficacy to manage survivorship issues and by motivatingpatients to manage care issues. Further research is needed onsurvivors who conduct the SC before the treatment phase oftheir cancer trajectory. Overall, the SC was reported to beeffective in the development of the survivorship care plan;however, more research is needed to validate the value andimpact of the SC in empowering patients to be more knowl-edgeable and active in their care.

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Conflict of interest None to declare.

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