How does a child's cancer diagnosis affect their family members mental health years later? According to the results of a new study, that effect can be significant (J Clin Oncol 2019; doi.org/10.1200/JCO.19.01382). Researchers used a childhood cancer registry to link birth records of children diagnosed with a childhood cancer between 1998 and 2014 with those children's mothers' and siblings' health records. The individuals were matched to corresponding cohorts of controls without histories of childhood cancers. The researchers compared rates of outpatient visits for mental health issues and other psychiatric events (including, hospital visits, and ER visits) among the two groups.
The data showed mothers of the children diagnosed with childhood cancers were at a 40 percent increased risk of seeing a health provider for a mental health complaint compared with their matched controls. Siblings of patients diagnosed with cancer as children were at a 10 percent increased risk of seeking medical help for a mental health issue.
And the factors that increased risk of these mental health events did not include the type or severity of the diagnosis of the cancer patients. What did increase risk of these mental health events for mother were younger maternal age at cancer diagnosis, low socioeconomic status, and rural residence. Older sibling age among the siblings was the only factor looked at that increased risk of mental health events.
In an interview with Oncology Times, study co-author Sumit Gupta, MD, PhD, a staff oncologist in the Division of Haemotology/Oncology and clinician investigator at The Hospital for Sick Children in Toronto, explained why the findings are noteworthy.
1 Why do this study now? How do the findings compare with previous knowledge about the mental health of families of children diagnosed with cancer?
"We had noticed that (unsurprisingly) parents and siblings of patients with cancer go through a lot of emotional trauma at the time of diagnosis and during treatment. But, anecdotally what we were seeing was that family members who were quite remote from the diagnosis were still struggling with anxiety and worry. So, are these families at increased risk of mental health issues? And if so, for how long does that persist?
"Most of the research on this topic has been surveys [of] small groups of family members, usually from a single center. So it's unknown whether those [findings] are actually generalizable to a whole population. Our findings were in a large, population-based cohort of moms and siblings. The mothers experienced a 40 percent higher risk of mental health visits than the population-based controls; and that elevated risk persisted at least 20 years from the diagnosis.
"Similarly, siblings were at increased risk as well, but not as increased as the mothers. They had about a 10 percent increased risk. And that started about 15 years after the diagnosis and then increased from there. A lot of these siblings would have been children, young children, or not even born at the time of the cancer diagnosis [of their siblings]. So, [the mental health struggle that resulted in] visiting a psychiatrist or general practitioner may only start when they get older themselves.
"The other major finding was that we predicted families that had children with particularly bad cancers or who had particularly intense treatment might be at more risk of struggling with adverse mental health. But, in fact, none of those treatments or disease factors impacted an individual mother or an individual sibling's risk. It was really instead just demographic risk factors that predicted your risk."
2 How conclusive are the study findings and how generalizable do you think the findings are outside of Ontario and Canada?
"Because in Ontario we have a single-payer health system, there are centralized records of all medical doctor visits, emergency room visits, and hospitalizations. That's the data source we used to look at the interactions for mental health complaints between this whole population and the health care system.
"If you had mental health struggles and chose not to access the system, we would not have captured you. Similarly, if you had mental health struggles and saw a social worker or psychologist [outside of the system], we would not have captured that. That's a limitation for sure.
"But because of the universal health insurance system, for the doctor visits, ER stays and hospitalizations, there is no charge associated with that-whereas for psychologists and social workers and counselors, [there would tend to be costs]. So that's why we think we probably did catch the bulk of mental health services [used].
"I think the trauma of a childhood cancer diagnosis is probably pretty generalizable across jurisdictions. One of the things that I suspect in terms of problems with generalizability is that, while we still have barriers to accessing mental health care in Ontario, they're probably smaller barriers than, for example, in American jurisdiction.
3 What's the bottom-line of this research?
"One thing to mention is that lots of moms and siblings still do very well from our data. It's just that their risk [for mental health problems] is increased compared to other populations. And what our study shows is that the increased risk and increased trauma persists for decades after the initial diagnosis.
"So, I think one of the messages is that basically in all health care systems, the contact that these families have after their child's treatment-whether that child survives or not-tends to dwindle pretty precipitously after the child finishes treatment or dies.
"But these study members have needs that persist way beyond that period in time. So is there a role for family care models that persevere onwards after the end of treatment? We have survivor clinics, for example. Should those be open to family members as well? Is there something we should be doing during the treatment period that mitigates that risk?
"One of the takeaways that I've taken to my clinical practice is that [we all tend to] operate under this assumption that if a child is diagnosed with a cancer that requires (what seems to us to be) minimal therapy or [has a cancer that is] highly curable, then we tend to think of that as relatively low-risk.
"But I think what these results show is that, if that family has other demographic risk factors like being a very young mom at the time of diagnosis, being from a low socioeconomic area, or having already struggled with mental health, then that family may still struggle tremendously long-term."