Sample characteristics
Of the 69 respondents of the previously administered survey [38], 51 expressed interest to further participate in the interview study. Subsequently approached by the study team, 21 individuals did not reply, one declined participation, and two could not find the time to make an appointment. We conducted interviews with the remaining 28 participants (response rate 55%). Among them, the most frequently reported diagnosis was leukemia (10/28). Survivors had completed treatment on average 19 years prior. Of the 28 participants, 68% were female (mean age at study: 31 years; mean age at diagnosis: 9 years; Table 1). All interviewed experts (one legal, two insurance experts) had 20-40 years of working experience in the healthcare sector (Table 1).
Overall, three key themes emerged from the interviews with the CCS: 1) experiences with insurance, 2) perception of discrimination, and 3) needs and barriers for support. The interviewed experts provided further detailed clarification of CCS’ concerns, which are grouped to match the themes. In the following, we describe each theme in detail.
Experiences regarding insurance
CCS expressed concerns about the many different facets of insurance, ranging from basic health insurance to DI and private insurance (Table 2). As one CCS phrased it; “What I think has stuck with me most of all are not the physical aspects but the whole thing with the insurances.”
With regard to basic health insurance, most CCS were satisfied with the coverage. However, some CCS also mentioned that they had to actively invest time and energy into making sure they were reimbursed for their healthcare costs. CCS, who reported difficulties with their basic health insurance, similarly pointed towards difficulties with reimbursements. This encompassed novel treatments such as fertility costs or rehabilitation treatment abroad and included costs caused by dental late effects.
CCS described different concerns relating to DI, in which CCS with late effects or disability can request to reduce working hours. CCS who received DI or were in the process of acquiring DI described it as a challenging procedure. One CCS reported having to “muddle through” the entire process for two and a half years. Others reported they had to explain a lot and questioned whether staff assigned to their application could “really understand what the problem is of the whole thing [cancer and its late effects]”. One CCS described how he went through a challenging time in applying for DI. He experienced the questions posed by medical experts in charge of approving his DI application as very stressful. In addition, the CCS mentioned he was not allowed to have anyone present who could support him during the questioning. He stated that in getting his medical approval for DI, he had to go through “3 hours of almost psycho-terror”. Or as another CCS reported: “When you are really unstable and mentally not quite there […]. Then you are helpless, lost - really simply at their mercy.”
While some CCS were in the process of requesting DI, others were reluctant to apply despite potentially being qualified. Those who were currently reluctant expressed either a negative attitude toward being a DI-recipient or wanted to resume their normal life. Additionally, some CCS who had been reluctant earlier, and refrained from applying for DI, did not know how to apply for DI now, and some faced difficulties with their application. The interviewed experts further explained this:
Especially in the labor market it leads to a situation in which if a person notices that they cannot work 100% [fulltime position], because they just can’t cope, people simply say then "I will reduce 20% of my workload", but they don't report it [to the DI] and then they have voluntarily reduced. […] and somehow 10 years later when they reduce again from 80% to 60% they declare [to the DI] that this is now because of demonstrable medical late effects of cancer. Only then are they considered 20% disabled because before that they have ‘voluntarily’ reduced their workload [from 100% ti 80%]. In reality, they would be 40% disabled, but because they did not declare the first 20% years before, because they did not want to admit they need DI, for understandable reasons, they punish themselves because otherwise they would have DI in addition to a 60% income. If you then perhaps still have family obligations, it is then simply financially tight. And then there is the question again, do you still have to manage working 80% pensum, because they need it financially. Then there is a vicious circle. That is what we still experience very often. – Legal expert at a patient organization, >25years of working experience
The three experts mentioned the importance of providing appropriate advice to all CCS who, due to their late effects, may have to reduce working hours in the future and therefore apply for DI. For this reason, CCS must be adequately informed about the measures to be taken, which requires legal information.
In the context of private insurance, CCS reported difficulties with supplementary health insurance or life insurance. CCS who did not already have supplementary health insurance before childhood cancer were only eligible for insurance that was not related to their cancer diagnosis or its late effects. In situations where they had supplementary insurance prior to their childhood cancer, they were often no longer able to make changes to their insurance policy. CCS reported similar concerns with their life insurance either it would not make financial sense; premiums would be higher and/or cancer would be excluded. Only few CCS reported no problems at all in getting private insurance despite their childhood cancer history. One CCS was not requested to report his medical history, although this is a standard and legal procedure of insurance companies for supplementary health and life insurance. According to him, his “insurance broker at the time, [who] also had had cancer and everything. Yeah, […] he said you should let that [the cancer] rest at some point.” Another CCS described how he was able to get supplementary health insurance 10 years after being curatively treated and while attending follow-up care.
Perception towards discrimination
In some CCS, their social and health insurance experiences evoked feelings of “discrimination” and “unfairness”. CCS claimed that because their cancer history is not a lifestyle choice, when their health insurance excludes them from supplementary insurance, it feels as if they are punished for something that is beyond their accountability. One CCS mentioned that “if that happens on the basis of the illness, […] that's not fair, because in most cases you cannot help it.” Another CCS said that “Leukemia, that's something that can happen to anyone […], but that's the way the system works, I don't think it's any use getting worked up about it.” Some CCS argued that it would be different if people are excluded who can be held accountable for their behavior (e.g. due to smoking or risky sport behaviors).
Sure if someone smokes for 40 years and then suddenly, yes […]. But some people have been smoking for 40 years and they don't have such effects, but that's the way it is with insurance companies. If you do risky sports, at some point someone found out what risky sports are. Of course, I can never have a riding accident if I don't go riding, simple, yes. But in case of illness, nobody knows that. That's why I think it's not good to be classified that way. And somehow you get a feeling that you are less valuable because you had that illness, so yes, not nice – Male survivor, >25 years since treatment (19M)
Need and barriers for support
CCS expressed a strong need for legal support for themselves and parents whose children are diagnosed with cancer. CCS further specifically wished for a point of contact to turn to for legal questions and/or concerns regarding insurance such as health, disability, and private insurance. CCS acknowledged that addressing these topics or concerns would go beyond healthcare professionals’ expertise, but they wished someone would be able to guide them through insurance issues.
Most CCS described how, in the end, they got legal help through their personal contacts. One CCS explained how her parents’ legal insurance had allowed her to contest the unwillingness of her basic health insurance to cover a dental procedure which became necessary due to a late effect. Without the legal insurance of her parents, she would have had to pay the procedure herself. In addition, without the support of a legal service the problems faced by CCS are extremely time consuming. CCS shared stories on how they would not contest some denied reimbursement claims since they “do not want to get into the whole thing and get into such a feud.”
I have to advise everyone to get a lawyer. […] I think that, if only there was a place where I could have gotten specific advice on this […], or a lawyer specialized in this. […] Now in the end I asked my godparents; they are both lawyers. Now after this I have to say: As long as someone who had cancer can still prove what their late effects are, and that is why they cannot work fulltime, and they can really prove it comes from the, for example, chemotherapy […] I have to recommend everyone to get a lawyer. – Male survivor, >25 years since treatment (3M)
Finally, the interviewed experts emphasized the increasing need for interdisciplinary support on socio-economic aspects during CCS’ follow-up. Although they agreed that their recommendations would not substitute any medical advice, they argued that, for the same reason, healthcare professionals should not make “legal, social insurance, or employment law ‘diagnoses’”. This was partly motivated by the fact that, in some circumstances, such extra-medical advice by health professionals led to inaccurate information provided to the CCS. Experts reported that it can be incredibly difficult to correct legal misinformation when it is provided to the CCS by healthcare professionals;
When the client [CCS] tells me, yes, but the doctor has said that it [the second wheelchair] will be reimbursed. Then I say the doctor can't promise this as he's not competent to do so. It's just going to confuse the client. Should they believe the doctor or the lawyer because one is ‘lying’, I find this a pity. – Legal expert at a patient organization, >25years of working experience
Experts further mentioned the lack of a well-functioning network between healthcare professionals and interdisciplinary staff (i.e. social workers, (social) insurance and/or legal experts) as a primary barrier to appropriately refer CCS with needs to available support services. However, experts reported that recently both, experts and healthcare professionals, are recognizing the need for interdisciplinary collaboration. With better collaboration between experts and healthcare professionals, experts are convinced that it will not necessarily increase demand. However, it will enable better advice and less miscommunication for those CCS vulnerable to socio-economic hardship.