Qualitative evaluation of care plans for Canadian breast and head-and-neck cancer survivors

People with cancer are living longer because of improved access to effective screening, diagnosis, and treatment1. However, some survivors experience ongoing psychosocial and physical symptoms, including fatigue, pain, sleep disturbance, depression, and anxiety2. Many express uncertainty about how to manage their health after the transition from treatment to follow-up care3 and about who will be responsible for particular aspects of their care as they move forward4–7. Some report a lack of information about possible recurrence, psychosocial resources6, and late and long-term treatment effects3–8. Breast cancer survivors report a multitude of post-treatment physical, psychological, sexual, body image, social, occupational, and relationship problems that require attention9–12, including problems with fatigue, sleep, weight gain, memory, and concentration. Some have vasomotor menopausal symptoms or psychosocial concerns including problems with family relationships and problems re-integrating into their lives (or both)12,13. They report a range of unmet information, medical communication, and psychological needs 6–24 months after diagnosis14 and unmet existential needs up to ABSTRACT

10 years after diagnosis, especially problems with anxiety or depression 11 .Some report clinical depression at 3 months 13 and 6 months 15 post-treatment, and those who experienced chronic distress during the first year after diagnosis typically experience even greater long-term distress (6 years later) 16 .
Although less is known about the needs of survivors of head-and-neck cancer, research also shows that the disease and its treatments can have long-lasting and debilitating effects on physical and psychosocial wellbeing 17 .Problems with teeth, mouth-opening, mouth dryness, sticky saliva, appetite, and finances can persist or worsen during the first 5 years after treatment 18,19 .There can also be increases in pain, fatigue, depression, and anxiety 17,[20][21][22] .
New strategies are needed for survivorship care, which can include patient education, ongoing routine monitoring, and tailored support 12,23 .The confusion reported by family physicians and oncologists about their roles and responsibilities in survivorship care 24 , the increasing number of cancer survivors, and recommendations from the U.S. Institute of Medicine (iom) 1 all point to survivorship care plans (scps) as a strategy for managing and reducing the ongoing needs of cancer survivors 6,[25][26][27][28][29][30][31] .
Most previous studies of scps have described their optimal qualities [32][33][34][35][36][37] or the views of key stakeholders on their possible use 4,5,7,8,30,38,39 .Studies about the implementation of scps are limited 40,41 .A pilot study showed a possible positive impact of scps for clarifying treatment history, available resources, and timing of follow-up appointments for breast cancer patients and for clarifying the treatment history and health status of patients for primary care physicians 42 .A randomized controlled trial revealed no improvement in patient-reported trauma symptoms as a result of scps that were implemented, on average, 24 months post-treatment (rather than directly after treatment as recommended by the iom and others) 43 .We identified a need for in-depth research about scps created and implemented according to iom guidelines.
We have a multidisciplinary provincially focused team dedicated to researching and delivering evidence-based survivorship care in Alberta, a large western province in Canada.We conducted the present study as a demonstration project to explore the feasibility and utility of developing and implementing scps with breast and head-and-neck cancer survivors.The project included a quantitative component that has already been reported (Giese-Davis J, McCormick J, Zhong L, et al.Care plan implementation for breast and head and neck cancers: an Alberta CancerBridges demonstration project.Presented at the Canadian Association of Psychosocial Oncology conference; Toronto, Ontario; May 4-6, 2011); the qualitative component is reported here.The purpose of the qualitative component was to hear directly from survivors, nurses, and family physicians about their experience with the content and delivery of the scps, with the aim of addressing these research questions: What are the strengths and shortcomings of the scp used in this study and of the process of its delivery?How can we improve content and delivery?

METHODS
We delivered scps to survivors of breast and headand-neck cancer and conducted an evaluation that entailed collecting qualitative data from the survivors and from nurses and physicians involved in the scp process.The participants responded to open-ended questions on a questionnaire, and 20% of them completed telephone interviews.Based on earlier research, we organized the evaluation to cover satisfaction, usefulness, emotional reactions, communication value, and suggestions for improvement.

SCP Creation
Existing scp templates designed in the United States are not well suited to the Canadian context, and so we developed scp templates based on recommendations from the Canadian Partnership Against Cancer and the iom and on input from health professionals and survivors.We used a collaborative, iterative process that produced more than 20 versions over 6 months.The computerized (spreadsheet) templates were designed for nurses to prepare ahead of time and to complete with survivors during in-person or telephone meetings.The nurses passed each completed scp to the survivor's family physician and scanned it into the survivor's medical record.A completed scp summarizes a survivor's oncology treatment and provides a personalized plan for survivorship that can be used by both the survivor and the physician (Table i).

Recruitment
All recruitment methods were approved by the Conjoint Health Research Ethics Board of the University of Calgary Faculty of Medicine and the Tom Baker Cancer Centre.

Nurses
The focus was provincial for breast cancer survivors and local for head-and-neck cancer survivors.For breast cancer scps, we selected nurses employed in 2 tertiary cancer centres in metropolitan areas, in 2 associate cancer centres in rural settings, and in 1 community-based organization focused on breast cancer survivorship.For the head-and-neck cancer survivors, we selected a nurse specialist for that tumour group at a tertiary treatment centre.cancer centres, and 11 breast cancer survivors from the community-based organization.The nurses approached consecutive patients who were within ±2 weeks of leaving active treatment, explained the project to them, and asked if a research assistant could contact them.The research assistant contacted those who agreed and further explained the study, answered questions, and obtained informed consent.

Survivors
The study included women 18 years of age or older diagnosed with stage i, ii, or iii breast cancer, and men and women 18 years of age or older diagnosed with nonmetastatic head-and-neck cancer.We excluded anyone whose English comprehension was not sufficient to complete questionnaires and interviews.

Physicians
We invited each survivor's family physician to participate.on questionnaires.We purposively sampled 20% of the survivors for 12 semi-structured interviews (4 head-and-neck, 8 breast).We sampled for diversity in age, treatment, disease experience, lifestyle factors, location, and additional challenges such as homelessness and alcoholism.Every survivor invited for an interview agreed to be interviewed.The 9 nurses who delivered the scps provided written responses to open-ended questions on questionnaires and also completed interviews.Of the 57 family physicians, 22 provided written responses; we invited 12 to be interviewed, and 3 agreed.Nurse and physician interviews were tied to the 12 survivors interviewed.Thus, we collected written data from 54 survivors, 9 nurses, and 22 physicians (n = 85), and we interviewed 12 survivors, 9 nurses, and 3 physicians (n = 24).

Of
The two groups of survivors demonstrated several demographic differences.The average age of the breast cancer survivors was 53.6 ± 9.29 years, and most were white (91.4%), had higher household incomes (42.9% exceeding $100,000), were married (80.0%), and were employed full time (51.4%).The head-and-neck cancer survivors were predominantly male (80.0%), with a mean age of 55.5 ± 11.90 years.A smaller percentage were white (70.0%), and they had lower household incomes (55.0% less than $60,000).A smaller percentage were married (70.0%), and about half had partial or no employment (55.0%).

SCP Implementation
Each nurse received a full day of education about survivorship, the research project, the purpose and content of the scp, cancer follow-up guidelines, and use of the scp template.A research assistant provided ongoing support to the nurses throughout the study.The nurses completed their scp tasks during paid work time with permission from their managers.The tasks included co-creating the scp with the survivor, passing the scp to the survivor's family physician, and scanning the scp into the survivor's oncology record.
The goal was to deliver an scp within 2 weeks of the end of active treatment, but because of scheduling and illness complications, the median time posttreatment was 33 days (range: 6-63 days) for breast cancer survivors and -2 days (range: -32 to 100 days) for head-and-neck cancer survivors.There were delays in rural settings because of travel complications and the workload of nurse navigators.
There were 4 kinds of nurses and 4 delivery methods: • A chronic disease nurse in an urban communitybased organization delivered scps in one-on-one meetings with survivors who were her patients.• A nurse practitioner delivered scps through a survivorship class located at a tertiary treatment centre, having prepared the plans in advance.
• A clinical nurse specialist made individualized scps for head-and-neck cancer survivors and discussed them with the survivors in one-on-one meetings.• Nurse navigators delivered most of the scps by telephone in 1 urban and 2 rural sites, having previously mailed paper copies to the survivors.

2.5.1
Questionnaires Survivors, nurses, and physicians answered openended questions posed using questionnaires at the time of scp delivery.The Likert-type questionnaires had questions for survivors and medical professionals about their interactions during the scp process and included open-ended questions about positive aspects of the experience and possible improvements (Table ii).The answers to the open-ended questions were included in the analysis.

Interviews
The research assistant conducted individual telephone interviews with participants a median of 38.5 days after scp delivery (range: 1-162 days).The interviews included specific questions about satisfaction, usefulness, emotional reaction, and communication value, and general questions about the experience of participants in delivering or receiving the scp and suggestions for improvement (Table ii).The interviews averaged 32.76 minutes (range: 13.06-61.30minutes) for survivors, 23.67 minutes (range: 14.49-42.27minutes) for nurses, and 11.38 minutes (range: 9.08-15.09minutes) for physicians.We audiotaped the interviews, and a trained transcriptionist transcribed them verbatim.

Data Analysis
We combined the data from survivors, nurses, and physicians because we were interested in their collective perspective on the collaborative process of implementing scps.JM and AW conducted the analysis in consultation with KC.They began with a question analysis and identified data from the interviews and open-ended questions that pertained to satisfaction, usefulness, emotional reaction, communication value, and suggestions for improvement.They coded data within each of those topics for themes, and as themes emerged across questions and participant groups, they completed the analysis as a thematic analysis guided by the two research questions 44 .JM and AW coded the data individually and met regularly to refine the coding scheme and to discuss emerging themes.When they disagreed, they coded together until a consensus was built.In this way, they identified dominant themes (those that were given special emphasis by participants, that were shared across the groups of participants, or that were mentioned frequently).They made note of alternative views.They used the Hyperresearch software application (version 3.0: Re-searchWare, Randolph, MA, U.S.A.) to help manage and analyze the data.

RESULTS
The themes that emerged from the analysis mirrored the interview questions and reflected our interest in satisfaction, usefulness, emotional reactions, communication value, and suggestions for improvement.The themes and subthemes are described in the subsections that follow and are listed in Table iii.

Satisfaction and Usefulness
Survivors, nurses, and physicians all said that they found the scps useful for reducing uncertainty, easing the transition from active cancer treatment to survivorship, and enhancing follow-up care.

3.1.1
Comprehensiveness Survivors said that they liked having information about their cancer, treatment, and ongoing care written down in one place so that they would not have to rely on memory or on materials collected over the course of treatment.They were satisfied that the scps covered their most important medical, informational, emotional, financial, and social concerns, including issues that they had not previously considered.
One survivor said, "This is certainly because you don't necessarily focus on that kind of stuff unless someone sits down with you and makes you pay attention to it."What do you think about the process of creating the care plan?
How could it be improved?

Usefulness
In what ways will this plan be useful be for you over the next 6 months to a year?
In what ways does this plan give you some concrete direction now that you are finished with treatment?

Emotional reaction
In what ways does this care plan affect your feelings about leaving the cancer centre now that your treatment is done?
Communication value Do you think having this care plan will make a difference in your follow-up care?If so, in what ways might it make a difference?
In what ways do you think this care plan might impact the communication between yourself and your care providers?
End of interview Finally, we would like to give you a chance to make any further comments you'd like to share with us, and any suggestions you have for improving the care plans themselves or the process of creating and delivering the plan.

Open-ended
What was particularly positive about this experience for you?
What would you change to improve this experience?
Is there anything we have not given you a chance to say?
a Interviews were conducted with the nurses who delivered care plans, the survivors who collaborated in plan creation and received plans, and the family physicians who received plans.Questions were formulated to stimulate discussion for the survivors.Questions for the nurses and family physicians followed the same format, but were worded appropriately.For example, survivors were asked "In what ways is this useful for you?"; nurses and physicians were asked "In what ways do you think this will be useful for you and the survivor?"Nurses said that the comprehensiveness of the scps would help to ensure that all aspects of care were addressed in a timely manner.Some said that the process of creating scps improved their understanding of the care that would be needed.
Physicians said that the scps provided useful guidelines for follow-up care, especially in the case of an uncommon cancer or a physician with less experience with cancer. said that it was useful to have information outlining expectations for patients and physicians in one document.

3.1.2
Future Reference Survivors valued the scps as a reference for the future.One survivor said, "At this point in time there's information in there that I don't need, but who knows what will happen down the road?"Psychosocial issues might arise that could require specialized care or resources beyond what the family physician can offer.Survivors wanted their scps to be living documents that they could use to record details of their disease, psychosocial concerns, and lifestyle factors, and to monitor their progress over time.

Emotional Reactions
Survivors reported positive emotional reactions to the scps in three areas: • Reassurance, comfort, and stress reduction • Uncertainty reduction, empowerment, and increased sense of control • Support No negative emotional reactions were reported.

3.2.1
Reassurance, Comfort, and Stress Reduction Survivors appreciated having additional time with "experienced" nurses and said that the interactions afforded them important opportunities to clarify their concerns, thus reducing anxiety and stress: Having a face-to-face interview with [the nurse] was invaluable as far as notching down the stress level.... To have someone that is so experienced and has seen a million things and had this conversation so many times with so many women just made me feel far more comfortable.Survivors said that they found it reassuring to have comprehensive information.One said, "It's been an overwhelming couple of years for me, and so to have this laid out-what needs to be done, when, and the contact names and phone number-I really appreciate that."Another said that the scp "reduces the anxiety about [cancer] significantly because you know who to call if you have questions."

Uncertainty Reduction, Increased Sense of Control, and Empowerment
Survivors, nurses, and physicians all emphasized the value of uncertainty reduction.A nurse explained that it is important for some survivors to know that things "aren't going to go easily" because of side effects and unforeseen changes, and that they need to know "what will be cause for concern, as opposed to normal, expected events."Survivors said that their scps gave them a sense of control that empowered them to advocate for themselves and to take care of their own health.A nurse said that, when survivors know what is normal and what to expect, "they can keep moving forward instead of stalling."

3.2.3
Support Survivors expressed the view that it was valuable to know they were not "disconnected" as they entered survivorship and that assistance would be available if problems arose.That idea was echoed by the nurses and physicians.A nurse said: I think the concept of a care plan or some sort of supportive transfer of care is really vital for these people, because many people will say that transition from being released from the cancer center and their final treatment to them just being out there on their own is a tremendously difficult transition.
A survivor put it this way: "That this isn't the end.That things continue on.And here is a plan, and we care about you, and this is what we put together.This is what we think-and go through it all together."

Communication Value
The process of creating scps provided an enriched form of interaction between survivors, nurses, and physicians that all parties appreciated.Survivors expressed this appreciation whether the care plans had been delivered one-on-one or in classes.Nurses and physicians said they found the scps to be an excellent prompt for discussions, as well as a vehicle for gaining a fuller understanding of survivors in their care.Similarly, survivors said that the scps prompted discussions with physicians that neither side might have initiated.A physician for a headand-neck cancer survivor said: Certainly his particular cancer is one that I'm not as familiar with, so even for me knowing what are the expected effects and healing times and all that.And especially that I can be reassuring to him.
The scps demonstrated to survivors that there was communication between the cancer centre and their family physician and that everybody was "on the same page."

Concerns and Alternate Views
Some nurses were concerned that an scp process that took between 0.5 and 2 hours would be too time-consuming to fit into a nurse's schedule and would be "a tough sell" from a sustainability perspective-even if it became faster with familiarity.Most survivors were not concerned about the amount of time.One said, "If you want a decent care plan you have to take the time to do it right," but a few said that it took too long because they were too tired or sick to take in all the information.Some survivors wanted to ensure that their physicians received the scp with instructions about its purpose.
Some nurses expressed concern about confidentiality in class settings and about discussions that did not apply to everyone.All the physicians mentioned the short amount of time they have with patients and said that it would be difficult to address all the issues covered in the scps.Some were uncertain about the role they were to play in the process of delivering, maintaining, or using the scp.One nurse said that not having an opportunity to discuss the scp directly with the family physician was problematic: It's fine for me to hand her the care plan.It's fine for us to send it to the physician.But I don't know who her physician is.I don't know what he or she would be willing to do or not do.
There was disagreement about the best time to deliver the scp for head-and-neck cancer survivors.Some survivors said that during the last treatment session or immediately after treatment would be best.Others said a few weeks after treatment would be better because they would be less troubled by side effects and more able to focus on other issues.

Suggestions for Improvement
All the nurses suggested auto-populating the scps from electronic medical records to save time (which was not technologically feasible at the time of the study), and some suggested that clerical staff complete the form and nurses check it for accuracy before Current OnCOlOgy-VOlume 21, number 1, February 2014 Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).delivering it.Nurses and survivors suggested providing survivors with a copy of the scp ahead of time to speed the process and help survivors to be prepared.A survivor said, "not only would you be able to see it ahead of time and kind of prepare yourself for what was going to be presented, but it also might aid in filling in gaps." Physicians asked for a summary that they could "flip to," rather than having to read the whole document.The head-and-neck nurse suggested having one version to deliver immediately after treatment and a second to deliver at the 6-week follow-up.Survivors, nurses, and family physicians all said that removing information not relevant to the particular survivor would make the document more user-friendly.Nurses and survivors both discussed the need for a balance between personalization and sustainability.
There were suggestions for things to add to the scps, such as information about rural resources and about family issues, body image, and breast self-examination.Head-and-neck cancer survivors wanted more practical, day-to-day information, especially about eating.Family physicians requested more about less common side effects.

DISCUSSION
In this demonstration project, we evaluated scps delivered to 57 breast and head-and-neck cancer survivors in Alberta, Canada.We conducted a thematic analysis of 24 interviews with survivors, nurses, and physicians involved in the scp process and of 85 written responses from the three groups.By combining data from survivors, nurses, and physicians, we generated an overall perspective that emphasized the collaborative nature of scps.A dominant theme that crossed all three groups of participants was that scps can significantly enhance communication between survivors, their nurses, and their family physicians at an important time.
This study, with its quantitative counterpart 45,a , was one of the first to deliver scps close to the end of active treatment.The positive results contrast with a previous study of scps delivered an average of 24 months post-treatment 43 .Further research is needed to clarify the optimum time for delivering an scp and to assess the feasibility of delivering it within 2 weeks of the end of active treatment, particularly for survivors in rural areas.The important issue of the best time to deliver an scp, per iom guidelines, remains to be tested against the reality of delivering them when nurses are available and survivors are emotionally ready.
A surprising result of the study was the emphasis that survivors placed on the usefulness of the process of creating the scp, in particular the extra time spent with knowledgeable nurses.Although nurses echoed that view, nurses and physicians were both concerned about the time needed to implement an scp.We believe that the time required could be an important investment in the health and wellbeing of survivors, but future research is needed to investigate the feasibility of taking the time and the value of that time in relation to the long-term benefits of scps.
We see the practical suggestions offered by participants to address the crucial issue of sustainability as an important result of the study.We were pleased to hear survivors say that the scp creation process worked as well in a class format as it did one-on-one.For the class format to be useful, confidentiality issues would have to be addressed.Nurses indicated that the scp process might require better communication between nurses and physicians to work well.We focused the present evaluation on practical, emotional, and systemic dimensions of scps.The results shed light on the potential value of scps in the context of whole-person care and provided useful information for improving the content and delivery of scps.
Reduction of stress and anxiety stood out as the dominant positive emotional reaction reported by survivors.A contributing factor was uncertainty reduction, which survivors said increased their sense of control and led to feelings of empowerment to be proactive in their care.Stress reduction is valuable in its own right and as a means of improving not only quality of life and psychological function, but also the immune, endocrine, and physiologic function important to cancer progression 46 -48 .The elements of the scp process that contributed to stress reduction could be accentuated as scp development continues, as could factors that led survivors to feel empowered.
Family physicians can play an important shared role in caring for people with cancer during active treatment.That role is even more relevant once a patient transitions to survivorship.Many people have long-standing relationships with their family physicians, who often have considerable background knowledge of their patients' medical and lifestyle history and thus are in an ideal position to provide care once a cancer patient moves into the survivorship phase.Our study revealed multiple ways in which scps could enhance communication between survivors and their care providers, and between cancer facilities and family physicians.The results suggest that well-designed and carefully implemented scps can enhance medical interactions, smooth the transition back to primary care, and improve the follow-up care that survivors receive from their family physicians.

CONCLUSIONS
The results of our study are limited by the mixture of participants, disease sites, and methods of delivery, and by the small number of physicians who were interviewed.Our simple thematic analysis of the mixed data generated an overall impression of the potential value of scps.Studies that are more focused and that include more in-depth analyses are needed to fully understand the usefulness, communication value, emotional impact, and sustainability of scps.
The present study shed light on how scps might ease the transition to survivorship by coalescing information needed for follow-up care, enhancing communication between survivors and medical professionals, and providing important emotional benefits to survivors.The results suggest that scps could produce long-term benefits; however, further research is needed to determine the extent to which scps might improve follow-up care over the long term.
OnCOlOgy-VOlume 21, number 1, February 2014 Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).

a
Giese-Davis J, McCormick J, Zhong L, et al.Care plan implementation for breast and head and neck cancers: an Alberta CancerBridges demonstration project.Presented at the Canadian Association of Psychosocial Oncology conference; Toronto, Ontario; May 4-6, 2011.e26 Current OnCOlOgy-VOlume 21, number 1, February 2014 Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).

Current OnCOlOgy-VOlume 21, number 1, February 2014
Nurses recruited 19 breast cancer survivors and 21 head-and-neck cancer survivors from tertiary treatment centres, 6 breast cancer survivors from rural Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).
Elements of the care plan delivered to breast and head-and-neck cancer survivors 5. Healthy living recommendations or guidelines, goals, and action plans, or both An interactive section on managing health after treatment, so that survivors can prioritize goals and action plans for physical activity, diet, weight, alcohol, and smoking 6. Resources and activities for survivors Packet of booklets and brochures List of important and relevant local resources and Web sites e21 Current OnCOlOgy-VOlume 21, number 1, February 2014 Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).

table ii
Interview guide and open-ended questions a after care plan delivery for breast and head-and-neck cancer survivors

table iii
Themes, subthemes, and exemplar quotes 4. Concerns and alternate viewsIt's fine for me to hand her the care plan; it's fine for us to send it to the physician; but I don't know who her physician is.I don't know what he or she would be willing to do or not do.5. Suggestions for improvement [By providing a copy in advance] not only would you be able to see it ahead of time and kind of prepare yourself for what was going to be presented, but it also might aid in filling in gaps.e24 Current OnCOlOgy-VOlume 21, number 1, February 2014 Copyright © 2013 Multimed Inc.Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).