Best practices for cancer survivorship care in young adults

From Drs Syrjala and Baker, Clinical Research Division

Young adult (YA) cancer survivors may be subjected to adverse health outcomes and psychosocial issues after cancer treatment. However, large portions of YA cancer survivors, defined as people aged between 18-39 at time of diagnosis, do not access or do not receive access to appropriate survivorship care. Follow-up care for YAs is an area that has been actively researched, but a clear consensus on the best strategies to do so has not been reached. Recently, experts and stakeholders in the field of survivorship care developed guidelines for key areas to be included in follow-up care plans. Building on this, a team of researchers led by Dr Karen Syrjala and Dr K. Scott Baker, part of Fred Hutch’s Clinical Research Division, designed a multicenter randomized controlled trial with the purpose of  addressing survivorship issues in YAs. Their research, recently published in Journal of Cancer Survivorship, highlighted how self-managed survivorship care plans can improve psychosocial issues such as distress in a proportion of YAs who have been diagnosed with cancer. Describing the goals of their study, Dr Baker discussed how “there are very few survivorship studies focused on the adolescent and young adult (AYA, ages 15-39 at time of diagnosis) survivor population and they have unique needs that are very different from those of pediatric survivors or older adult survivors.”

As part of their clinical trial, the authors designed a survivorship care plan that was tailored specifically to the individual with a self-managed component. “This study was designed to target those who were identified as having high survivorship needs, provide a comprehensive survivorship clinic visit where an action plan would be developed to address their symptoms and other concerns and, pair survivors with tele-health follow-up calls to provide additional support to these survivors that was focused on their greatest needs,” described Dr Baker. Participants in the trial were sub-grouped into categories based on their need, determined by qualitative patient reported outcome questionnaire scores for pain, distress and confidence, among other factors. Participants who were high scoring were classified as high need and were randomized into two groups, standard of care (control) or self-managed survivorship care plan (intervention) and outcomes were compared. The authors’ baseline assessments of the trial participants noted that those who were classified as high need were less likely to have a partner and less than a 4-year college degree compared to trial participants in the low-need group. They found that the high-need group reported high percentages of distress and fatigue. Notably, of those participants who reported high pain scores, a majority also reported insomnia and distress. Further, high-need participants had less confidence in survivorship information they had received than the low-need group. As part of the self-management care plan, participants were asked to schedule an in-person visit to discuss their individual needs and next steps. Interestingly, the authors observed poor attendance at these in-person visits in the high-need group, reasons included transport barriers and missing work/school. “This study was novel in that we were able to identify and categorize survivors who had high vs. low needs and focus the intervention on the high need group,” noted Dr Baker. 

Targeted survivorship care improved high distress scores in young adult cancer survivors.
Targeted survivorship care improved high distress scores in young adult cancer survivors. Image from publication.

The authors followed up with trial participants at a 6-month timepoint and examined changes in psychosocial scores for high-need participants, observing a decrease in stress levels in high-need participants assigned to the intervention. Following up again after 12 months, the authors detailed that although it did not reach statistical significance, depression scores improved in the intervention group compared to high-need participants assigned to standard of care. Lastly, considering the high rates of no-show at clinical appointments, the authors examined psychosocial scores only in participants who attended their in-person visits. At the 6-month time point, confidence in survivorship care as well as depression scores had improved amongst the intervention group.

In addition to providing self-managed support to the YA cancer survivorship population, this study highlighted existing gaps in survivorship care, addressing the need for tailored interventions for this cancer survivor population. “One of the main findings of the study was that in general, AYA survivors were very reluctant to take time away from school, work, etc., to schedule a survivorship clinic visit and thus compliance with the clinic visit randomization was poor. This was an important finding as we learned that in planning future survivorship research with the AYA population that we really need to focus on interventions that do not require in-person visits. Thus, in our current work we are exploring how we can utilize mobile health technology (web, mobile app and telehealth) based interventions in this age group,” explained Dr Baker. 

This work was funded by grants from the LIVESTRONG Foundation, the National Cancer Institute and National Institutes of Health

UW/Fred Hutch Cancer Consortium members Karen L. Syrjala, Casey A. Walsh, Wendy M. Leisenring and K. Scott Baker contributed to this work.

Syrjala KL, Walsh CA, Yi JC, Leisenring WM, Rajotte EJ, Voutsinas J, Ganz PA, Jacobs LA, Palmer SC, Partridge A, Baker KS. Cancer survivorship care for young adults: a risk-stratified, multicenter randomized controlled trial to improve symptoms. J Cancer Surviv. 2021 Sep 29. doi: 10.1007/s11764-021-01105-8. Epub ahead of print. PMID: 34590205.