A new survivorship model for adolescents and young adults (AYA).

Abstract

43 Background: The AYA population is a growing group of cancer survivors, currently exceeding 600,000 in the US, with 70,000 new diagnoses each year. These survivors experience deficits in general health, mental health, and functional status. Unfortunately, many are lost to follow-up after the completion of active therapy. They lack clarity about where to go for care and why such care is needed. To further complicate this, many have not established a primary care provider (PCP). Methods: We present a model of survivorship care tailored to the AYA population. Our clinic has dedicated physical space and is staffed by pediatric- and adult-trained oncologists. Survivors are paired with age-matched peer navigators to guide them through the logistics of follow-up care and assist with age- related transitions in education, housing, and insurance. Additionally, we have established a new model of survivorship care, introduced immediately at the end of active therapy, utilizing a staged curriculum, survivorship care plans, and point-of-care health-related quality of life assessment. Results: Fifty-five unique patients seen in 182 visits provided data for this report. The median age was 26 years (range 18-40). Twenty-nine (53%) of the patients were female. The majority of patients (58%) had been treated for a hematologic malignancy. One third of patients had completed college (31%). Most were employed (71%), but a majority still lived with their parents (64%). The majority of patients had more than one late effect (62%). Twenty-three (43%) reported mental health symptoms, including anxiety, mood swings, or sleep problems. Conclusions: A survivorship clinic with tailored programs for AYAs is feasible and necessary. In our sample, many AYA survivors have late effects and almost half reported psychosocial distress. Clinicians need to monitor this age group closely to ensure that patients are not lost to follow-up as they transition from active treatment to survivorship care and from pediatric to adult-based care. Our clinic provides an integrated medical home for the AYA survivor that continues to care for them when active treatment comes to completion and provides ongoing care coordination with PCPs and subspecialists to co-manage their complex health issues.

Adolescent and young adult Hodgkin lymphoma: Raising the bar through collaborative science and multidisciplinary care

“…In a study comparing posttherapy screening recommendations for AYAs with HL, Barthel et al. noted significant variation between COG Long‐Term Follow‐Up Guidelines, NCCN Guidelines for Age‐Related Recommendations: AYA Oncology, and NCCN Guidelines for Treatment of Cancer by Site . Efforts to develop age‐specific follow‐up guidelines and survivorship programs for AYAs with HL should be considered a high priority.…”

“…In a study comparing post-therapy screening recommendations for AYAs with HL, Barthel et al noted significant variation between COG Long-Term Follow-Up Guidelines, NCCN Guidelines for Age-Related Recommendations: AYA Oncology, and NCCN Guidelines for Treatment of Cancer by Site. 90 Efforts to develop age-specific follow-up guidelines and survivorship programs for AYAs with HL should be considered a high-priority. Given excellent outcomes with both pediatric and adult-type regimens, questions about optimal therapy for AYAs should consider the late-effects of proposed treatments when planning.…”

“…Just as standard treatment guidelines for AYA HL have not been established, long-term follow-up guidelines for this age group vary widely between COG and the NCCN. In a study comparing posttherapy screening recommendations for AYAs with HL,Barthel et al noted significant variation between COG Long-Term Follow-Up Guidelines, NCCN Guidelines for Age-Related Recommendations: AYA Oncology, and NCCN Guidelines for Treatment of Cancer by Site 89. Efforts to develop age-specific follow-up guidelines and survivorship programs…”