“While it’s great news that so many young adult survivors are receiving critical aspects of their post-treatment care, this study helps us understand where there is more work to be done,” said Merry-Jennifer Markham, MD, ASCO Spokesperson.
“Survivorship care is especially important for adolescents and young adults, who still have long lives ahead of them after completing treatment. This study highlights that, despite the existence of post-treatment guidelines for this population of survivors, there are opportunities for improvement to increase adherence and improve survivorship outcomes.”
Researchers have identified gaps in receipt of recommended post-treatment care for adolescent and young-adult (AYA) Hodgkin lymphoma survivors.
Overall, 52% of survivors did not receive all recommended care within the first year post-treatment.
Importantly, however, nearly all survivors (96%) had recommended oncology visits, and 70% received the recommended lab tests within the first five years.
“Patients treated for Hodgkin lymphoma are at high risk for recurrence and relapse, as well as serious long-term and late effects,” said lead study author Erin E. Hahn, PhD, MPH, a research scientist at Kaiser Permanente Southern California, Department of Research and Evaluation.
“We need a systematic way to deliver post-treatment care, including screening for late effects of treatment. Studies like this will help inform the design of survivorship care programs that address all our patients’ needs.”
Cancer is the leading cause of disease-related death among AYAs, and its incidence has been increasing in this age group.
Hodgkin lymphoma is one of the leading diagnoses for AYAs, accounting for 12% of all new AYA cancer diagnoses.
Standard treatments for the disease, which involve chemotherapy and radiation, are very effective, enabling the majority of patients to survive past five years.
However, survivors remain at high risk for long-term and late effects of treatment, such as heart and thyroid problems, lung disease, second cancers, infertility, and psychosocial problems.
The onset of late effects varies, with complications emerging as late as 10 years after treatment, in some cases.
This study assessed adherence to the National Comprehensive Cancer Network (NCCN) post-treatment guidelines among 354 Hodgkin lymphoma survivors, diagnosed between the ages of 15-39 years.
The patients were identified from the Kaiser Permanente Southern California integrated health care system and were diagnosed, treated, and followed within the system.
The average follow-up time was six years.
Within the first five years after completing treatment, 96% of survivors had at least one visit per year with an oncologist, and 70% received the recommended laboratory testing.
Overall, 48% of survivors received all recommended care within the first 12 months.
“I was happy to see that most patients were seeing their oncologists and having some appropriate testing in the first five years after treatment,” said Dr. Hahn.
“I think there is work to be done to increase awareness of other guideline recommendations, and potentially access to services.”
Services that were commonly lacking included psychosocial counselling and appropriate vaccines.
The patients diagnosed in more recent years (2006-2010) were more likely to receive recommended post-treatment care than those diagnosed between 2000 and 2005.
The researchers also found overuse and underuse of imaging to screen for recurrences and new cancers.
While two-thirds of survivors received a recommended CT scan in the first 12 months post-treatment, nearly half also received non-recommended CT scans in year two.
In addition, a third of survivors received non-recommended surveillance PET scans.
However, Dr. Hahn stressed that the researchers were unable to determine clinical indications of these imaging tests.
While this study was limited to patients in California, the authors hope to expand the cohort to include other Kaiser Permanente regions.
Dr. Hahn’s research team plans to conduct a more detailed analysis of this dataset, as well as conduct a follow-up study with a larger group of patients to look at use of longer-term recommended services.