Emily R Haines1, Lauren Lux2, Andrew B Smitherman3, Melody L Kessler4, Jacob Schonberg5, Alex Dopp6, Angela M Stover7, Byron J Powell8, Sarah A Birken9. 1. Department of Social Sciences and Health Policy, Wake Forest School of Medicine, 525 Vine Street, Winston-Salem, NC, 27101, USA. ehaines@wakehealth.edu. 2. UNC Adolescent and Young Adult Cancer Program, Lineberger Comprehensive Cancer Center, 101 Manning Dr, Chapel Hill, NC, 27514, USA. 3. Pediatric Hematology-Oncology, Lineberger Comprehensive Cancer Center, 101 Manning Dr, Chapel Hill, NC, 27514, USA. 4. Department of Chemistry, University of North Carolina at Chapel Hill, 125 South Road, Chapel Hill, NC, 27599-3290, USA. 5. Center for Excellence in Community Mental Health, Department of Psychiatry, University of North Carolina School of Medicine, 3010 Falstaff Rd, Raleigh, NC, 27610, USA. 6. RAND Corporation, 1776 Main St, Santa Monica, CA, 90401, USA. 7. Department of Health Policy & Management, University of North Carolina at Chapel Hill, 135 Dauer Dr, Chapel Hill, NC, 27516, USA. 8. Brown School & School of Medicine, Washington University in St. Louis, 1 Brookings Dr, St. Louis, MO, 63130, USA. 9. Department of Implementation Science, Wake Forest School of Medicine, 525@Vine Room 5219, Medical Center Boulevard, Winston-Salem, NC, 27157, USA.
Abstract
PURPOSE: In the USA, many of the nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer each year do not receive services to address the full scope of needs they experience during and after cancer treatment. To facilitate a systematic and patient-centered approach to delivering services to address the unmet needs of AYAs with cancer, we developed the AYA Needs Assessment & Service Bridge (NA-SB). METHODS: To develop NA-SB, we leveraged user-centered design, an iterative process for intervention development based on prospective user (i.e., provider and AYA) engagement. Specifically, we conducted usability testing and concept mapping to refine an existing tool-the Cancer Needs Questionnaire-Young People-to promote its usability and usefulness in routine cancer practice. RESULTS: Our user-centered design process yielded a need assessment which assesses AYAs' physical, psychosocial, and practical needs. Importantly, needs in the assessment are grouped by services expected to address them, creating an intuitive and actionable link between needs and services. CONCLUSION: NA-SB has the potential to improve care coordination at the individual level by allowing cancer care programs to tailor service delivery and resource provision to the individual needs of AYAs they serve.
PURPOSE: In the USA, many of the nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer each year do not receive services to address the full scope of needs they experience during and after cancer treatment. To facilitate a systematic and patient-centered approach to delivering services to address the unmet needs of AYAs with cancer, we developed the AYA Needs Assessment & Service Bridge (NA-SB). METHODS: To develop NA-SB, we leveraged user-centered design, an iterative process for intervention development based on prospective user (i.e., provider and AYA) engagement. Specifically, we conducted usability testing and concept mapping to refine an existing tool-the Cancer Needs Questionnaire-Young People-to promote its usability and usefulness in routine cancer practice. RESULTS: Our user-centered design process yielded a need assessment which assesses AYAs' physical, psychosocial, and practical needs. Importantly, needs in the assessment are grouped by services expected to address them, creating an intuitive and actionable link between needs and services. CONCLUSION: NA-SB has the potential to improve care coordination at the individual level by allowing cancer care programs to tailor service delivery and resource provision to the individual needs of AYAs they serve.
Entities:
Keywords:
Adolescent and young adult cancer; Biopsychosocial screening; Concept mapping; Needs assessment; Patient-reported outcome measures; User-centered design
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