The AYA Program at Tufts MC in Boston was thrilled to have three posters representing our work at the 2016 ASCO Surviorship Symposium, which highlighted AYA-focused research taking place around the world! Dr. Susan Parsons and Nadine Linendoll, PhD, were joined by two of the program’s most ardent supporters, Gene and Lorraine Sacco, to share our model of survivorship care which is tailored to the AYA population, our investigation into survivorship guidelines which sometimes differ and our systematic review of health-related quality of life in Hodgkin lymphoma survivors.
Additional AYA research findings shared at the conference included:
- Financial and work related impact of cancer on young adult survivors (Scott, et al., US study)
- The alarming trend of long-term childhood cancer survivors stopping follow-up care after a period of time (Kurkure, et al., Indian study)
- AYA survivors reporting greater need for health care use and poorer health care quality compared to individuals without a cancer history (Kirchhoff, et al., US study)
- The need for long-term childhood cancer survivors to receive survivorship care due to complex medical histories and long-term follow-up needs (Lowry, et al., US study)
- Survivorship care plans help capture and address off-therapy issues for young adult survivors as well as adult survivors (Szalda, et al., US study)
- Importance of providing care for AYAs using a shared-care model in which an AYA has a Primary Care Physician (PCP) & the PCP and oncologist increase their communication with one another (Kinahan, et al., US study)
- Using an online patient-centered tool to improve pediatric cancer survivors’ knowledge regarding the importance of survivorship care (Mertens, et al., US study)
- An examination of recommended post-treatment services for AYAs diagnosed with Hodgkins (Hahn, et al., US study)
- Reports from young breast cancer survivors who thought an early fertility preservation discussion was essential (Seminsky, et al., Canadian study)
- Intensified, individual nutrition counseling for AYAs, diagnosed in childhood, led to improved dietary habits including taking more time to eat, increasing fluid intake and positively changing weight (Quidde, et al., German study)
- Expectations of responsibility to assist with mental health issues, interpersonal relationships and reintegration back to work/school placed on their Primary Care Physician (PCP) more than their cancer specialist by young adult survivors; highlighting the importance of integrating the PCP into survivorship care (Wang, et al., Canadian study)
- Use of alcohol, nicotine or illicit drugs (ex. marijuana) by AYAs undergoing treatment or within 2 years of completing therapy had an associated negative impact on their quality of life (ex. anxiety, depression, PTSD symptoms) demonstrating the need for interventions (Hlubocky, et al., US study)
- Greater perceived risks of infertility and importance of fertility risks by AYAs were associated with lower quality of life suggesting infertility risks should be discussed at each part of the cancer care continuum from diagnosis through long-term follow-up (Tercyak, et al., US study)
