For those who have experienced childhood cancer, surviving and making it into remission is the number one priority for them, their families, and their caregivers. And with advances in treatment, survival rates are now at an impressive level that should help provide hope to the millions of people who face this disease at a young age. However, as we have focused our attention for so long on this one goal, we may have been overlooking what happens next for these individuals. Long-term effects of disease, treatment, and time away from peers and education could seriously impact someone’s quality of life when it comes to psychosocial symptoms, chronic health conditions, and even employment. In an effort to understand some of these outcomes, Dr. Neel Bhatt, along with members of the Childhood Cancer Survivor Study (CCSS), an NCI-funded resource, recently published in JAMA their results of a long-term follow up study on employment pattern for survivors of childhood cancers.
To approach this, they utilized a retrospective cohort from the CCSS which followed individuals who had been diagnosed before 20 years of age, between 1970 and 1986, and assessed their employment status between 2002-2004, with age ranges between 25-54, with a follow-up between 2014-2016, when participants’ ages ranged between 27-65. By assessing both at later in life following their cancer diagnosis and at a follow-up time, they were able to see changes in employment, rather than a static measurement – something that many previous studies fall short of. Dr. Bhatt elaborated that, “it’s a dynamic variable, and if we notice something at one timepoint, it doesn’t that tell the whole story.” They also assessed health conditions, to relate those to employment status, another component of this analysis that was unique and something which is often overlooked. When looking at both men and women, they found that most individuals did have full or part-time employment at the 2002-2004 baseline assessment (64.8% and 71.3%, respectively). However, the standardized prevalence of ratio (a comparison accounting for expected prevalence in the general population) of employment decreased for both sexes by the follow-up time point (2014-2016). The authors also observed an increase in the proportion of health-related unemployment between baseline and follow-up, but no change in prevalence of those unemployed but looking for work.
They next assessed how individuals’ employment changed across time by looking at those who had been employed full-time at baseline with known employment status at follow-up. They observed that the majority of individuals for both sexes remained full-time employed at follow-up, but reasonably high proportions transitioned to part-time (9% women; 3.7% men), became unemployed but were still seeking work (10.1% women; 8.8% men) or left the labor force entirely (8.5% women; 2.8% men) highlighting the high prevalence of ‘negative employment transitions’- a term that the research team coined to describe these changes. They also wanted to assess changes for people who were unemployed due to health-related reasons at baseline and found that the majority of them remained unemployed for this reason or had passed away by the follow-up time. Dr. Bhatt emphasized that this was “a very surprising finding for us, and eye opening.” Upon noting this trend, to then further examine how chronic health conditions could affect employment, they also analyzed employment transitions for individuals who were employed full time at the first time point and found that those having a medical condition prior to initial timepoint or developing one in between the timepoints were at significantly higher risk of negative employment transitions. On top of this, they saw that more severe conditions or higher number of conditions was associated with a higher risk of these employment status changes. Dr. Bhatt further explained that we often miss focusing on the “downstream impact of these chronic conditions…how it can affect their finances, their employment.”
Dr. Bhatt hopes that the findings presented here help push for changes from clinicians and employers, and through health-related policies. For clinicians and care-providers, understanding the impact of chronic health conditions, which cancer survivors are at high risk for developing, could motivate them to treat these aggressively and in a timely manner. Patients would likely also benefit from care-providers screening for employment related issues, such as job satisfaction, ability to perform tasks, and how often they need to take time off, hoping they could be a first line of support to provide or facilitate assistance. Dr. Bhatt additionally believes that this is invaluable information when it comes to employers, as they have to understand that cancer survivors are at risk for chronic conditions and “they should be supported not discriminated against, because they can lose their job.” This is especially important, he added, as “more than 50% of patients are still relying on employer-sponsored insurance…”, “and if you lose your job, you can lose your insurance.” This predicament could then result in financial stress, “inability to pay bills, get access to medical care and getting all the surveillance…for long-term complications,” resulting in further health issues that become hard to treat. “It's a domino effect,” Dr. Bhatt explained.
With the number of childhood cancer survivors increasing rapidly in the US, there is high motivation to insure something is done to care for these patients in the long term. Dr. Bhatt also hopes to assess other components of quality of life among childhood cancer survivors, such as how financial hardship could impact behaviors, health outcomes, and health care utilization. Another planned study will assess the specific breakdown of occupation types in this population, building off preliminary studies suggesting survivors are more likely to be employed in blue collar jobs. Understanding the long-term impact of surviving cancer in childhood could help promote adequate care and support, such as social work teams, like the Hutch has, that help survivors transition back into the work force and ensure their success there. The research team hopes that by publishing in an open-access, high-impact journal, as well as having attention brought to their paper, clinicians and employers can become aware of this phenomenon, and take strides to address it.
This spotlight work was funded by the NCI.
Fred Hutch/University of Washington/Seattle Children’s Cancer Center Consortium members Drs. Neel Bhatt, Eric Chow, Wendy Leisenring and Eric Chow contributed to this work.
Bhatt NS, Goodman P, Leisenring WM, Armstrong GT, Chow EJ, Hudson MM, Krull KR, Nathan PC, Oeffinger KC, Robison LL, Kirchhoff AC, Mulrooney DA. Chronic Health Conditions and Longitudinal Employment in Survivors of Childhood Cancer. JAMA Netw Open. 2024 May 1;7(5):e2410731. doi: 10.1001/jamanetworkopen.2024.10731. PMID: 38728029; PMCID: PMC11087836.