Defining patient-elicited concepts unique to adolescents and young adults with cancer.

Abstract

12118 Background: Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to complex biopsychosocial variables and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology with differing care paradigms and service utilization. These issues, in conjunction with differences in tumor biology and lower accrual to clinical trials, have contributed to marginal improvements in outcomes for AYAs. Compounding this dilemma is a lack of validated patient-reported outcome measures (PROs) for AYAs. Tracking standardized PROs longitudinally is a crucial step in understanding psychosocial variables, identifying tailored needs, improving outcomes and standardizing care. However, developing a PRO tool for AYAs first requires identifying AYA-unique domains. Methods: Three, 90-minute focus groups were conducted with AYAs treated at Memorial Sloan Kettering in the context of 1) pediatric oncology, 2) medical oncology, and 3) either service. Topics explored included: experiences of cancer care as an AYA; physical, social and emotional concerns; and information needs, including appropriateness, timing, and depth of information. Thematic content analysis of transcripts was performed by four interdisciplinary coders in weekly iterative consensus rounds. Phase one consisted of identification of key domains to guide line-by-line coding with NVivo software. Phase two consisted of independent review and categorization of codes, followed by three successive consensus meetings to identify distinct themes. Results: A mean of 6 patients (range 5-7) participated in each of the 3 groups; the total sample (n = 17) included 9 males and 8 females, ages 19-35 years (median 26). Four AYA-unique themes were identified: 1. AYAs have an uncertain sense of the future and desire more engagement in conversations pertaining to survivorship, long-term effects and transition to outpatient life. 2. Cancer as an AYA is a socially-isolating experience, prompting a strong desire to connect with peers during and post-treatment. 3. AYAs want control over who can be present during discussions with their care team as the presence of loved ones can impede or facilitate communication. 4. AYAs may be living far away from loved ones during treatment and lack supports needed to help them navigate treatment and daily life. Conclusions: Concept elicitation via focus groups identified novel themes related to survivorship, isolation, communication and social support, which can inform development of AYA-specific PROs.