Logistic barriers to accessing care among adolescents and young adults with acute lymphoblastic leukemia: A secret shopper study.

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101 Background: Acute lymphoblastic leukemia (ALL) is a common cancer among children and young adults which requires prompt, specialized care. Adolescents and young adults (AYA) experience inferior survival relative to children, with prior work identifying poorer access to care in this population. Using a secret shopper study, we sought to identify logistical barriers to scheduling care for AYAs with ALL. Methods: Using population-based cancer registry data from California, New York and Texas we identified a list of facilities who reported treating at least one AYA with ALL from 2004 to 2018. We then identified publicly available phone numbers for each facility. Posing as secret shoppers, we called all facilities from February 2024 to March 2025 using a script describing a newly diagnosed 19-year-old with ALL in need of an appointment for an initial oncology consultation. We attempted to contact each facility up to three times. We collected data about the number of call attempts or transfers, the length of time from initial call attempt to completing a call with a scheduler, and other scheduling requirements (e.g., physician referral, transferring medical records). Data was summarized using descriptive statistics. Results: We initially identified 389 non-military facilities treating AYAs with ALL. 97 facilities (25%) offered no outpatient medical oncology appointments, of which 54 (56%) recommended alternative facilities that were added to our list. After deduplication, a total of 411 facilities were called. For 38 (9%) facilities, no scheduling information was attainable: 17 required leaving a voicemail, 14 required a medical record number, and 7 were unreachable despite three attempts. We successfully connected with someone knowledgeable of new patient scheduling for 276 (67%) facilities. Of these, 100 (36%) required two or more call attempts to reach a scheduler. Across all attempts, 229 (83%) facilities required at least one transfer to reach a scheduler, and 120 (43%) required two or more transfers. Overall, a median of 8 minutes (IQR: 5-12) were spent on the phone from initial call attempt through contact with a scheduler, 9% took 20 minutes or more. Finally, 145 (53%) facilities required physician referrals and 153 (55%) required medical records to schedule a first appointment. Only 57 facilities (21%) would schedule a new patient without either physician referral or medical records. Conclusions: We identified significant logistical burdens to accessing oncology appointments for AYAs with ALL. Despite three call attempts, we could not connect with a scheduler for one-third of facilities, and nearly 80% of those contacted required either physician referral or medical records to schedule. These findings highlight the complex and onerous pathways to accessing leukemia care in this population and underscore the importance of reducing logistical burdens to ensure timely care.

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