TABLE 3.

Themes and selected example quotations

Theme Title	Summary of theme	Quotations
Survivors and family
Strong support system	Family members are very involved with care.	“…the micromanaging family members actually help our patients, I think, make sure. Especially our young adult population to get on board with their regular routine care.”
Patient Education
Personalized health education	Health education is tailored to the patient’s needs/wants and delivered at the time requested.	“…if the patient came in and that day they asked about fertility … that’s when you hand them the paper on fertility rather than every single visit or, you know, giving them 20 sheets of paper that they weren’t interested in.”
Lack of personalized health education	Health education is not tailored to patient’s needs or wants.	“I think that we would be better off if we could meet patients where they are. So much of our educational material is in written form, and it’s printed with maybe a diagram of something… if we could talk to them in their own language, I think it would be much more effective.”
Clinic staff and providers
Survivorship dedicated staff	Staff that is solely assigned to the survivorship clinic and is educated on survivorship care.	“It was nice to have a dedicated scheduler who kind of understands like here’s how you can book five things in a day and space it out correctly so the families can get everything done and not feel stressed out by that.”
Lack of/mis communication with patient	Providers and/or staff members do not communicate adequately with each other and/or patient.	“We don’t have any Spanish-speaking providers. We can request an interpreter, but they’re very expensive …They prefer we use these little phones that are about six inches long, they go out, they don’t hold a charge. You can’t hear. I think it’s sub-optimal at best.”
Management and Processes
Clinic-level resource utilization	Providers and staff use resources that are available to the clinic (i.e. satellite clinics, local clinics for lab work, NGO funding, social workers, space for support group).	“They can go locally and get their labs and their tests and have them faxed to us” “And then I also go to a satellite office in [a different city]. So, [different city]’s about an hour and a half from [here], hour, hour and a half depending on traffic, so I do go six times a year over to that clinic to see patients.”
Clinic scheduling issues	Scheduling processes are inefficient, not followed, and/or not defined.	“My latest appointment is 3:00. I’m sure [patients would] prefer my latest appointment be more like 5:00.” “Sometimes when we have not perfected when appointments moved, making sure all testing moves with them. And I think that’s frustrating for families when their appointment has to move, and then they realize that when they come that they don’t have the echo scheduled that they thought they did.”
Lack of defined processes	General clinic processes are inefficient, not followed, and/or not defined.	“We have satellite clinics in [another area of the state]…but we don’t hold the [survivorship] clinic in either of those locations. They have to come down to main.”
Technology
Having and using scheduling technology	The clinic has and uses the scheduling technology available, such as for arranging telehealth or in-person visits.	“There’s a community…that is about two hours north of us, and we started a once-per-month half-day telemedicine clinic [there]. That one is nice, because they actually go into the clinic there. So, we get the vital signs, we get their height and weight. There’s a lab there.”
Lack of technology	The means of current technology are not available to the clinic.	“… [a] text reminder I think would be great, because I think we’re such an electronic society now that if you don’t recognize the phone number, you’re not going to answer the phone.”
		“I should be able to see what [previous clinic has] done to them, you know, like if they’re transitioning care down to [this state], but right now I can’t, so I have to get like physical paper records.”
Community or environment
Support Resources	Community support resources available to the patient, such as transportation vouchers, support groups, or a school liaison.	“... I would write letters to the school, …and they would just totally ignore it because I wasn’t speaking their language. I didn’t say what they needed to hear. … so [person hired] is now our school liaison, and that has been a godsend, so being able to specifically have people in place that can address the expected problems our kids have and have solutions to problems and ways to fix it.”
Distance/ Transportation	Transportation challenges include distance and financial and logistical issues.	“We are the only survivorship program in the state. We have a huge state…So it’s access to care. It’s transportation down here and being able to kind of coordinate all that.”
Policy
Financial resources	Availability of financial support for patients and/or survivorship clinic	“Like any childhood cancer patients in our – at [the clinic], they don’t have a bill, because anything that the insurance doesn’t pay, [the NGO] pick(s) up” “We’ve been very lucky to over the past five years go from a part-time program coordinator to a full-time program coordinator, and to have that funding be taken on by the university … because again, people respond better to a personal phone call…”
Lack of funding/ insurance coverage	Absence or insufficient funding, including insurance coverage for patients and/or survivorship clinic	“There is like a barrier to cost and what insurance companies think are appropriate or not.” “What I’m finding is that patients are, out of necessity, choosing high deductible, low monthly rate plans.” “When they were getting treatment, they met those high deductibles, so it didn’t matter in terms of them coming into a clinic visit, but now once a year a few scans, a couple years, they’re not meeting that high deductible.” “I find that there’s less foundations and less funds available for people who are off therapy.”