Addressing Age-Appropriate Cancer Care for Adolescents and Young Adults

Purpose: Adolescents and young adults (AYAs), normally defined as patients between 15 and 39 years of age, are often lost in the healthcare system that concentrates primarily on pediatric and adult cancers1. AYA cancer presentation can differ and treatments are less established compared to pediatric and adult cancers2. Many AYA patients are treated in pediatric facilities, which can lead to age-appropriate needs not being met. The goal of this project is to examine the AYA patient experience and assess if AYAs receive age-appropriate care at Cook Children’s Hospital in Fort Worth, Texas.

Methods: Patient reported outcomes surveys were administered to AYA patients diagnosed between 1/1/2016 and 1/1/2020 with at least one of the following cancers: acute lymphoblastic leukemia, acute myeloblastic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, testicular germ cell tumor, ovarian germ cell tumor, or sarcoma. Eighty-five patients were eligible to participate in the study. The survey and chart review included information pertaining to demographics, socioeconomic factors, treatment, and diagnosis-related questions.

Results: Seventeen patients have completed the survey. Patients rated age-appropriateness and quality of care on a five-point Likert scale. On average, patients rated the following aspects of their care as highly satisfactory for age-appropriateness: communication with medical staff (M = 4.80, SD = 0.40), staff recognition of life events (M = 4.71, SD = 0.46), provider attitude (M = 4.86, SD = 0.37), and support provided to their families (M = 4.82, SD = 0.40). Although still highly rated, the physical environment (M= 4.38, SD = 0.91) and recreational activities (M= 4.35, SD = 0.87) were reported to be slightly lower than the other categories for age-appropriateness.

Conclusions: AYA patients face unique challenges related to their cancer presentation and psychosocial needs. Interactions between patients, their physicians, and their environment all contribute to the patients' treatment experience and providing comprehensive, age-appropriate care is important. Overall, patients reported receiving age-appropriate care at Cook Children’s Hospital but reported slightly less satisfaction with the facilities and age-related activities. Based on these findings, continuing to establish age-appropriate resources and physical spaces for AYA patients can greatly enhance their quality of care and treatment experience. Beginning in 2016, Cook Children’s AYA clinic had already initiated changes to establish more supportive resources for AYAs, including creating and renovating a designated AYA lounge and implementing more programmatic psychosocial care through psychological interventions and AYA-specific support groups.

References

1. Alvarez, The Lancet Oncology, 2022

2. Smith, Pediatric Blood & Cancer, 2019