(P 04) EXPERT PANEL REVIEW OF THE PRO-AYA: PARTIENT-REPORTED OUTCOMES FOR ADOLESCENTS AND YOUNG ADULTS WITH CANCER

Objective: Adolescence and young adulthood are complex developmental processes, with changes physically, psychologically, socially and environmentally. Cancer therapy interacts with and disrupts these processes during and after treatment. As such, an emphasis on greater patient-centered research that addresses unique AYA needs is needed. Specifically, there is no existing AYA-specific patient-reported outcomes measure (PRO) to systematically capture and assess AYA symptoms and concerns throughout the treatment trajectory. Pertinent clinical domains include: symptom management; restrictions and disruptions in lifestyle; psychosocial health; relationships; perceptions about self and goals; fertility; survivorship; and financial concerns.

The lack of AYA-specific PROs limits our ability to effectively identify and track health changes, proactively respond to meet emerging clinical needs, measure the effects of interventions and improve the care of AYAs with cancer. Through our preliminary work, we developed a novel PRO measure for AYAs with cancer – the PRO-AYA: Patient Reported Outcomes for Adolescents and Young Adults with Cancer. The PRO-AYA was constructed from two sources: 1) utilizing a systematic review of the literature to identify relevant and validated PROs that can be validated for AYAs with cancer; and 2) novel concepts identified through concept elicitation focus groups comprised of AYA cancer patients and survivors.

Methods: Six focus groups of AYAs (n = 25; age range 16-39 years, 54.2% identifying as female and 70.8% as Caucasian) treated at Memorial Sloan Kettering Cancer Center (MSK) were conducted. Thematic content analysis of transcripts revealed six AYA-specific themes (Table 1) that informed the development of novel PRO items for inclusion in the PRO-AYA. Additionally, literature review of currently validated pediatric and adult PROs identified several PRO tools measuring concepts germane to AYAs (Table 2); constructs from each tool were then adapted and included in the PRO-AYA. The draft PRO-AYA includes ten domains: Information Preferences; Caregiver Involvement; Family and Household Members; Financial Impact; Pain and Distress; Symptoms and Status; Sexual Health; Fertility; Drugs; and Action Items. Stakeholders with expertise in AYA cancer care delivery and PRO development and validation were invited to participate in an expert panel to provide feedback on the PRO-AYA. Panelists completed a brief survey in which they were asked to rank the relevance of each domain to AYA cancer care on a scale of 1-4 (no relevance to most relevant) and offer suggestions for improvement. A content validity index (CVI) score for each domain was then calculated; constructs with a CVI less than 0.8 were then further discussed during two virtual, moderated discussions (n=28).

Results: Panelists (n = 27) from three continents and 21 organizations, representing various disciplines (e.g., medical and pediatric oncology and hematology, psychology and psychiatry, social work, nursing, pain and palliative care, etc.) and including patients and caregivers, completed our survey. They found nearly all domains to be acceptable (Table 3), and offered additional feedback about the PRO-AYA, including: revising the flow of the domains; including neurocognitive constructs; altering the language to be more inclusive of LGBTQ+ individuals; accommodating lower health literacy; wordsmithing to an eight-grade reading level; clarifying specific terminology (e.g., caregiver, support system, fertility, sexual health, etc.); and incorporating a community center-perspective. Further, panelists also provided insight into the frequency with which to administer the PRO-AYA, the format in which it should be delivered and how information should be conveyed to the treating medical team. Lastly, two panelists (7%) surveyed reported they would not use the PRO-AYA in its current form nor recommend it to their colleagues; 15 (56%) panelists were extremely likely or likely to use it and 18 (67%) were extremely likely or likely to recommend it to a colleague.

Conclusion: AYAs with cancer are uniquely challenged by their cancer care and developmental stage. Accurately capturing and understanding the factors influencing their care via PROs is critical; however, existing tools are not optimized for AYAs with cancer. An international expert panel provided feedback on further improving the previously developed PRO-AYA. Once validated through cognitive interviewing and comprehensive psychometric analysis, the PRO-AYA will be the first, comprehensive PRO measure specific for AYAs with cancer.

Avutu_PRO-AYA Expert Panel Review Table 1 CTOS 2022.pdf

Avutu_PRO-AYA Expert Panel Review Table 2 CTOS 2022.pdf

Avutu_PRO-AYA Expert Panel Review Table 3 CTOS 2022.pdf