Table 3.

Stakeholders’ expected outcomes from survivorship care plan (SCP) use

	Stakeholder	Expected Outcomes	Illustrative Quote(s)
Service Outcomes
Enhancing communication and role clarity	Survivor	Facilitate communication with PCP, caregiver(s), and other survivors	I think everyone should have a copy of this [SCP]…Everyone should pull it up [because]…I come to the doctor and I give them some information [but] I omit a lot of information because I just don’t think of it at that precise moment…so if they were to browse this then they might catch, ‘Oh, this might be a symptom of a… delayed side effect for the treatment that she had. (Survivor)
	Caregiver	Facilitate communication with survivor, PCP, and other caregivers	We were fortunate…we talked a lot about this stuff. I met people through the whole process who didn’t do that. The spouses or… sometimes…siblings, whatever…didn’t communicate with each other. And [the SCP] would be a really good instrument to do that…to say, ‘well, this is kind of where we’re at’ and kind of you’d have your own team meetings under…[your] own roof. (Caregiver)
	PCP	Facilitate communication with cancer care providers	I mean I don’t think it has to be that formal. I mean I think there… I think just…either a message encounter or… or a phone call [from Oncology]…something like that just to alert us to the fact that…I mean like we do when we discharge from the…hospital. I mean you get a… you get an alert that, ‘Hey, this person was in the hospital and they’re being discharged’…then I know I’ve got to go look at the discharge summary and that they’re [going to] have an appointment to meet…coming up. I don’t think it has to be kind of a sit down with the patient and the oncologist and the primary [care provider]… I think that would be kind of unrealistic…but a similar thing could happen in a virtual…environment. (PCP) …we kind of speak to…our value of being integrated, and so I think if we take advantage of the electronic medical record…[the potential for] communication between the patient and the specialist and…the primary care provider so that everybody knows kind of we’re all on the same page…that’s kind of why we’re here…what we do. (PCP) [A SCP] should provide family docs, they’re the primary people, a plan. Because that’s really what they want. When they’re seeking any kind of specialist, they just want a plan in place to know what they need to do. And then who to call … so that if something was to happen, they know what to do, who to go to, kind of thing. (Cancer care provider)
		Facilitate communication with patient and caregivers	I think the fact that the [SCP] document is there…if it says…there may be risks…10, 15, 20 years out…it allows us to…have that conversation, to keep that on… the radar…’Hey, good news but…we still have to be…concerned about these [long term effects’]…there is a lot of value to… keep that communication open and make everybody aware… these are the issues that we have to be concerned about. (PCP)
		Define roles and responsibilities in follow-up care	…so I mean [the SCP] is nice to have…it gives us some kind of a roadmap (PCP) …in the oncology world…there’s this point where…[the oncologists] can’t necessarily follow all these [survivors] indefinitely…And in our [primary care] world…if we don’t feel comfortable with kind of what we’re looking for [that’s a concern] (PCP) I mean I’ve had patients come back to me and say, ‘Well, the family doctor says that’s not up to him’ or ‘he’s not sure what the follow-up care is.’ So patients are feeling then not very secure. ‘Who’s following me? My family doctor says he’s not even sure.’ You know? (Cancer patient navigator)
	Cancer care provider	Facilitate communication with PCPs	…much of [what is in the SCP] is written for their primary care physician because often the patient, in my experience, they go through the primary care and say, “I’m here for a breast exam,” and they go, “Oh, don’t you know that doesn’t help?”…That is the truth. I can’t tell you how many patients come back like that, and I tell the patients, “Take this to the primary care and say, ‘My oncologist, my cancer specialist, told me this is what I need.’ They’re more apt to pick up a phone and call me rather than sending you away. (Cancer care provider)
		Define roles and responsibilities of all participants in follow-up care	I think [a SCP] empowers patients to what their role is…[what] they need to do and who they can educate…some primary care physicians have told me, ‘My, your patients are really educated.’ Not just me, like oncology patients. ‘They really know about their cancer.’ And that’s the whole idea of them being empowered to question. (Cancer care provider)
Meeting providers’ educational and informational needs	PCP	Contain current surveillance and follow-up care guidelines to ensure appropriate use of testing and services	PCPs, who have 15-minute visits, have to spend their evening hours having to sift through records we don’t understand, seeing all of these chemotherapeutics that maybe we learned about in medical school, but now they’re all changing, and putting together our own version of the SCP when we can, and if we’re not, patients aren’t getting good…appropriate care or treatment. (PCP)
		Describe the “who, what, when” of follow-up care	…it gives [family doctors]….a guide… Yes, they do get that very detailed note from [the oncologist] stating…your patient is now discharged, this is our recommendations for follow-up. But by also patients presenting with their care plans, they can also show the family doc I’m due for my blood work, it’s 3 months, and so forth…not all physicians are aware of what the follow up care is. (PCP) From a [PCP] perspective, to be able to pick up a plan of care to say, ‘okay, so this is [Patient X], this is what she had, this is what she didn’t have, this is what she knows she’s responsible for, this is when she’s going to call me, this is the treatment plan that I need to be sure I’m following, and here’s when I need to transition back to the acute care setting.’ (Cancer program administrator)
	Cancer care provider	Contain current surveillance and follow-up care guidelines to ensure follow-up care providers’ appropriate use of tests and services	…honestly, when I write…when I started writing those long-term follow-ups, it was because of that because I felt like, oh, my goodness. Look at…I got several patients back [from primary care]. They had gotten, you know, inappropriate testing based on the level of their cancer. (Cancer care provider)
		Describe the “who, what, when” of follow-up care for follow-up care providers, survivors, and caregivers	I think as far as physicians, and I’m talking family doctors, it gives them a guide of what their patient requires. … By also patients presenting with their care plans, they can also show the family doc I’m due for my blood work, it’s 3 months, and so forth. Because not all physicians are aware of what the follow up care is. (Cancer care provider)
		Resource to address aspects of health beyond cancer-related concerns and care	…people [don’t] fully appreciate…the concept of survivorship…in medicine…you always have to be evaluating and fixing something. In survivorship, you’re not really doing that…it’s more health promotion, health maintenance, and just…a global perspective of the patient…what really [is] the point of curing the breast cancer… only…to stick around for a miserable existence or to die an early death of some other cause… (Cancer care provider)
Mitigating provider anxiety	PCP	Reduce anxiety of transition by providing a clear roadmap of ongoing responsibilities and expectations	I would think from a provider perspective, [an SCP] would give the primary care physician that kind of peace of mind of knowing what [tests and procedures are] next. (Cancer program administrator)
	Cancer care provider	Reduce anxiety of transitioning patient to non-specialist care by ensuring follow-up care providers are sufficiently educated on role and responsibilities	Oncologists don’t want to transfer their patients because they don’t trust that the doctor will know how to take care of them. Well, make sure that they know and make sure that they have access to you if they’re not sure. (Cancer program administrator)
Facilitating efficient discharge to primary care and promoting equitable and appropriate follow-up care	Organization/System (From the perspective of multiple stakeholders)	Facilitate efficient discharge to primary care	One of the things that I’ve been interested in in a while is discharge back to GPs and so on, right? I think [a SCP] helps facilitate that because again I think it helps patients feel like, ok, I sort of know what needs to happen. (Cancer program administrator)
		Reduce unnecessary return to oncology care post- discharge	If I had cancer, if I had this – ‘returning cancer signs to watch for’ – that would make me feel a little bit better knowing what I should be looking for [in follow-up]. (Survivor)
		Reduce burden on oncologists	Part of what has spurred this has been that cancer programs are recognizing they need to start discharging patients, that they don’t have the capacity to continue to see patients 10 years after they’ve ended treatment. (Cancer program administrator) Like, if I were to keep all those patients … If you were to keep every single one of those early stage patients that you’d otherwise discharge, it would be huge numbers. … So it’s impossibility in our system, and probably in the rest of the universal type setting. (Cancer care provider)
		Reduce under- and over- utilization	I think that there are a group of survivors who are probably over-monitored at the moment, and a larger group that are perhaps under-monitored. So I think that that would be useful in terms of standards. So … I think [with a SCP] the appropriate things would be getting done at the appropriate time. (PCP)
		Maximize efficiency and save money over time	It should save money in the long run. In the window of when they’re looking at it, they probably don’t see it. It has to be a perspective kind of thing after years going back and looking back and going okay, how much did that save? (Cancer care provider)
		Provide equity in care (NSHA only)	…making sure that we’re giving standardized, appropriate information…everybody’s getting the same message, patients are being treated the same. (Cancer program administrator)
Patient Outcomes
Meeting educational and informational needs	Survivor	Permanent, reliable resource for information	…I put [the SCP] away and…that makes me feel like I still have control because if I want to review what’s happening then I can pull it out and then I can go and ask questions, but it’s there. It’s that information that I would need to ask my question, it’s already there and it’s not going to change. (Survivor)
		Describe the “who, what, when” of follow-up care	One of the biggest gaps [patients] identify is at the end of treatment: ‘Now what? What is my follow-up?’ I think if they had the survivorship care plan, they would be able to…take charge, be their advocate…It gives the patient control. I find it gives them that sense of control that they know now what is it that they require for follow-up. (Cancer care provider)
		Provide health-promoting information, including diet and exercise	It is about my health and wanting to live a long time. I had triple negative cancer…there was nothing to give me as a follow-up. I thought, ‘okay, what can I do then?’ I’ve been doing everything I can possibly do…I’m doing yoga and meditation. And none of that was told to me to do…I mean the research supports it, that a lot of this stuff can be prevented by our lifestyle choices. So…why not encourage somebody? (Survivor)
	Caregiver	Describe the “who, what, when” of follow-up care	But that time afterwards…we kind of found ourselves quite lost and kind of faced with a lot of the stuff that we had been through. And to have a little direction of where we were going would have been helpful. (Caregiver)
Mitigating fear and anxiety	Survivor	Reduce fear of abandonment by oncologist	You’ve gone through this whole process, which is obviously very, very traumatic and very worrisome, and then there’s nothing afterwards. You know, you walk out the door and they’re on to the next person…You’re by yourself, you don’t really know what’s going on. There’s a lot of anxiety. There’s a lot of…wondering…for me anyway…to have somebody to…talk about the next steps, or for somebody to lay out a plan, or…this is what it could look like…would be very helpful. (Survivor) But it is hard for [patients]…you know, previously, you’ve [as the oncologist] ordered all the mammograms, and now they’re going away and they’re relying on a doctor that has not taken a role for that, so they feel that…umbilical cord breaking and the other party is not there. So, you equip them with something that validates that that’s what they need, so they can take it to their primary care. (Cancer care provider)
		Reduce fear of death and/or recurrence	I think that it would reduce both patient and primary care provider anxiety…that the patients would understand that yes, there does have to be surveillance but that there is sort of a system approach. That it’s not random, that it is not incumbent upon the survivor to sort of be constantly monitoring and that kind of thing. (PCP)
	Caregiver	Reduce fear of abandonment by oncologist	Helping to keep that patient in the right frame of mind. We can’t do it all the time, but if they had something…to [better] understand that we’re not just patting them on the head and saying, “Bye-bye, go on,” to let them know that, yes, we are still a part of their lives. We will be here for whatever is needed. “We will see you X number of months out and then a year out, and…” I think it’s really important for women… these women and their families…the families will call, too, and say, “Well, what’s going to be happening next? What do we do from here?’ (Cancer patient navigator)
		Reduce fear of recurrence of loved one’s cancer	Fear and anxiety really have a huge impact on that stuff. So I think having an actual plan, being able to monitor kind of where you are after all the treatment stuff, and how am I progressing and how am I doing rather than just a visit with the oncologist and their half hour deal. (Caregiver)
Improving capacity for self-management; sense of control	Survivor	Shift locus of control to survivor and caregiver(s)	I understand that no one has…I cannot always control everything that happens in my body. I believe I can do something to help. And for me a survivorship care plan helps me feel that I have some control because I have some information…I spoke to both oncologists about long-term effects, and they mentioned a couple like perhaps I would [be at risk for]…second cancers… (Survivor)
	Caregiver	Provide benefit for caregivers and family members	I think this might help, having an after-care plan. Again, I know it sounds a little selfish but my perspective from where I sit…there was times that not knowing what you were going through, whether it’s not sleeping properly, feeling moody, feeling out-of-sorts, doing things out-of-character, and not knowing why…I think part of an after-care plan, from a spouse or a child [perspective], I think would be a health benefit. I think it’s a benefit, I’ve seen caregivers get ill because of it. And both physically and psychologically. (Caregiver)