In our study, more than 72% of AYA cancer survivors who were working or in school full-time before diagnosis had returned after 15 to 35 months; however, more than 50% continued to report some problems with work/studies on return. Similarly, the majority of patients who were unemployed, disabled, or engaging in only part-time work or school were likely to remain so 15 to 35 months after diagnosis. Among full-time workers/students, uninsured patients and those who quit working directly after diagnosis were least likely to be working/in school at follow-up. Further, very intensive cancer treatments and quitting work directly after diagnosis were associated with an individual's belief that cancer had a negative impact on plans for work/school. Combined, these results add to the growing body of literature examining patterns of work and education after cancer diagnosis that identify segments of the AYA population at risk of being more affected by cancer during the transitional time to older adulthood.
Our estimated rates of return to work among AYA patients with cancer are slightly lower than US national employment rates for this age group34
but are comparable to those of childhood and older adult cancer survivors.3,5,14,20–22
In a literature review by Spelten et al,3
the average rate of return to work among cancer survivors was 62% (range, 30% to 93%); however, the review included a wide range of patients with different cancer characteristics. More recently, several studies using the Childhood Cancer Survivor Study (CSSS) have evaluated return to work among adult survivors of childhood cancer, and they find employment rates exceeding 75% among patients with cancers similar to those included in our study.20–22
We build on these findings, specifically for young adults, by identifying that a large segment of young cancer survivors will transition back to the work force or school after their cancer diagnosis.
Our study also identified being uninsured and quitting work completely after diagnosis as important risk factors for not returning to full-time employment/school. Although many factors contribute to return to work, many individuals rely on employer-sponsored health insurance to provide needed benefits for themselves and their families. These results suggest that how health insurance is provided, if it is provided at all, may influence patients to make trade-offs between recovery, work, and health benefits.5
Considering that rates of being uninsured peak in adolescence and young adulthood,31
finding mechanisms to continue increasing access to insurance and survivorship programs in this population may further aid in the effective transition to work or school after diagnosis. Further, because quitting work/school directly after diagnosis was a significant risk factor for not returning at follow-up, future studies might evaluate reasons for this change to identify potential work/school modifications to prevent dropout from school or the workforce during this transitional time. In addition, these studies might evaluate potential interventions with clinicians and social workers in survivorship programs to balance treatment scheduling with work/school responsibilities or identify evidence-based interventions to minimize treatment adverse effects as a means for preventing work/school dropout.
Apart from returning to work, our study identified higher treatment intensity and quitting work completely after diagnosis as important risk factors for a belief that cancer had a negative impact on plans for work/school. These findings are consistent with previous studies evaluating work outcomes in childhood cancer survivors, for whom treatment regimens were identified as important contributors to not entering the workforce after diagnosis.1,2,21
Considering that these AYA patients are at a stage in life when completing education or entering the workforce successfully will greatly influence their future earning and career potential, patients may benefit from the incorporation of resources into the survivorship program that aid in the transition from treatment to occupational or educational pursuits. Thus, future research might focus on effective communication strategies between workers and employers to identify appropriate work modifications to aid in balancing the demand of work with adverse cancer-related issues, thus preventing patients from quitting work completely.
Our study provides further evidence pointing toward high rates of self-reported problems with work/school on returning. More than 50% of patients in our study who were working full-time before diagnosis reported problems with “forgetting,” and approximately 30% reported troubles “keeping up with work or studies” more than 15 months after diagnosis, indicating that survivors continue to deal with a wide array of issues well after diagnosis. Further, our sample reported work/school functioning scores that were comparable to other AYA and childhood populations with cancer,31
but worse than those for healthy young adults.35
Although the reasons behind problems with work/school are often multifactorial, previous studies in other populations have identified associations between chemotoxicity, higher doses of radiation, and long-term adverse treatment effects, including the development of second cancers,36
and trouble concentrating,40
as factors influencing the ability to perform work or school tasks.
Our study provides important data on work/school outcomes after cancer diagnoses in AYAs, but several limitations must be acknowledged. First, our study relied on patient-reported outcomes to evaluate the impact of cancer on work and education. Other financial and educational outcomes would provide additional insight into the monetary impact of cancer, but our study identifies a broad range of concerns and problems that AYA patients with cancer experience after diagnosis. Second, our sample was relatively small, resulting in small cell sizes and wide confidence intervals for some factors. Therefore, we may not have found significant associations for all factors that might influence work/school outcomes. We were also unable to stratify our results by age at diagnosis or workers versus students at diagnosis. Future studies should examine additional factors that may more strongly influence outcomes after diagnosis in these subgroups. Third, the PedsQL has not been extensively validated in those ages 19 to 39. The ability of this instrument to capture the appropriate workplace experiences for this age group should be further evaluated. Fourth, our study did not distinguish between the type and quality of work performed before and after cancer diagnoses, which may have important socioeconomic implications for these survivors. Finally, our study had a relatively small proportion of nonwhites and did not collect information on all cancer types occurring in the AYA population. As a result, future studies should evaluate how factors identified in our study apply to work/school outcomes in larger, more diverse AYA populations.
Despite these limitations, our study provides further insight into important factors related to a successful return to work/school for AYA patients with cancer. We identified a series of risk factors, including lack of insurance and change in work/school status directly after diagnosis, that significantly influence returning to work after cancer diagnosis. With a growing US population of more than 500,000 AYA cancer survivors, the majority of whom will return to work/school after diagnosis, future research should investigate best practices for effective transition and retention of cancer survivors in the workplace/school after treatment.