ASPO Abstracts
An actionable needs assessment for adolescents and young adults with cancer: the AYA Needs Assessment & Service Bridge (NA-SB)
Category: Cancer Health Disparities
Conference Year: 2021
Abstract Body:
Purpose. In the US, many of the 90,000 adolescents and young adults (AYAs) diagnosed with cancer each year
do not receive services to address their full scope of needs. To facilitate a systematic and patient-centered
approach to addressing the unmet needs of this underserved population, we developed the AYA Needs
Assessment & Service Bridge (NA-SB), a patient-reported outcome measure (PRO) for use in routine clinical care.
However, PROs are unlikely to address patient needs if they lack usability (i.e., patients/providers find them
difficult to use) or usefulness (i.e., they are not actionably linked to services that address identified needs). To
optimize the usability and usefulness of NA-SB, we leveraged user-centered design (UCD), an iterative process
for intervention development based on patient and provider engagement.
Methods. We conducted usability testing, including a survey and cognitive interviews with AYAs, to identify
usability/usefulness issues with an existing tool- the Cancer Needs Questionnaire Young People (CNQ-YP). Then,
we engaged AYA providers in concept mapping to inform our grouping of needs into "follow-up domains†based on
the service they should trigger. Finally, our study design team, comprised of provider and AYA representatives,
reviewed study data during a prototyping workshop to generate NA-SB.
Results. Survey (n=70) and cognitive interview participants (n=5) identified many usability/usefulness issues with
the CNQ-YP (e.g., length, missing content, etc.) that informed PRO revisions made during the prototyping
workshop. The design team used concept mapping data (n=26) to group needs into 9 follow-up domains.
Ultimately, our UCD process yielded NA-SB, a usable 57-item PRO which assesses AYAs' physical, psychosocial,
and practical needs. Importantly, the grouping of items by follow-up domain creates an intuitive and actionable link
between needs and services, facilitating NA-SB's usefulness in practice.
Conclusion. NA-SB has the potential to improve AYA care by allowing cancer programs to tailor service delivery to
the individual needs of AYAs. Furthermore, the UCD approach we used to develop NA-SB can help optimize the
usability and usefulness of PROs for addressing the unmet needs of other underserved populations.
Keywords: adolescent and young adult; patient-reported outcome measures; user- centered design