Screening and Needs Assessments in Adolescent and Young Adult Oncology

Needs assessment tools

The objective of a needs assessment is to identify and connect AYAs to the services and resources they might need. While screening for specific psychosocial needs may be common (e.g., depression, anxiety, general distress, fatigue),^3–6 AYAs often have multiple, interrelated physical, psychosocial, and practical challenges that merit a broad-based approach. ⁷ Implementing a standardized, multidimensional screening tool can ensure that patient needs are assessed comprehensively and systematically. Such tools have been developed specifically for the AYA population. For example, Patterson et al. adapted the NCCN Distress Thermometer and Problem List to create the AYA Psycho-Oncology Screening Tool (AYA POST), which has since been validated with an international sample of newly diagnosed AYAs.^8,9 AYA POST includes a global rating of distress, followed by a problem checklist, which includes physical, emotional, practical, social, and information needs. Similarly, Haines et al. developed the AYA Needs Assessment and Service Bridge (NA-SB), a 57-item measure which assesses AYAs’ unmet needs across nine domains. ¹⁰ A subsequent pilot study suggested that NA-SB is feasible, acceptable, and appropriate to implement from both the patient and provider perspectives and useful in identifying and addressing AYAs’ unmet needs. ¹¹ It is preferable to implement a needs assessment tool that has demonstrated feasibility, validity, or other supporting evidence (e.g., AYA POST or NA-SB); however, AYA programs may have institutional resource constraints, or their AYA patient population may have unique needs. Such programs may benefit from tailoring existing strategies to optimize an “in-house” needs assessment tool. For example, AYA programs might consider drawing from existing patient-reported outcome measures validated among AYAs and identifying those health-related quality of life domains that matter most to their patients.^12–14 The chosen needs assessment tool should be tailored to AYA-specific challenges and comprehensive of the full constellation of physical, practical, and psychosocial needs that AYAs experience during and after cancer treatment.^15,16 To promote equitable cancer care delivery among AYAs, needs assessments should be inclusive of items related to social determinants of health, social risk factors, and social needs.^17,18

Administering needs assessment tools

Administering needs assessments in routine cancer care presents several logistical challenges. ¹⁹ Extant studies have disagreed on the optimal approach for administration in terms of electronic versus paper delivery and in the clinic versus outside of the clinic. ²⁰ Maximizing the patient-level reach may require a flexible approach to administration, in which AYAs are asked to complete the needs assessment at multiple time points through multiple platforms. For example, an AYA might be prompted to complete a needs assessment prior to an upcoming appointment via a patient portal message. If incomplete, they might be approached again in the clinic with an iPad and asked to complete it then. Text-based approaches may also be considered. Moreover, a needs assessment should be administered at multiple time points during a patient’s cancer trajectory to account for the dynamism of needs; this requires the establishment of structured intervals for reassessment.

There are unique barriers to implementing a needs assessment for AYAs. AYAs receive care across pediatric and adult oncology clinics, and across various disease groups, all of which have their own idiosyncratic workflows and documentation systems. Integrating a needs assessment tool across all settings is challenging, and sensitivity must be taken to minimize redundancy with other clinic-specific screening efforts. AYA programs should consider mapping existing workflows and engaging with key stakeholders to anticipate implementation barriers. With this information, they can then formulate a plan for integrating the administration of a needs assessment tool such that it is minimally burdensome to both providers and patients. Table 1 presents potential strategies and resources for overcoming potential challenges.

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Table 1.

Administration Barriers of a Needs Assessment Tool for Adolescents and Young Adults and Potential Strategies and/or Resources

Barriers	Potential strategies/Resources
Needs assessment tools
Lack of broad-based needs assessment tools to address the multiple challenges faced by AYAs	The AYA Psycho-Oncology Screening Tool (AYA POST) includes a global rating of distress, followed by a problem checklist.8,9
	The AYA Needs Assessment & Service Bridge (NA-SB), a 57-item measure, assesses AYAs’ unmet needs across nine domains. 10
	The PROMIS AYA Health Status Profile, a 29-item measure of common health-related quality of life domains most important to AYAs. 15
Administration of needs assessment tools
Lack of a systematic approach for administration (i.e., electronic, in clinic, outside of clinic)	Consider a flexible approach where AYAs are asked to complete the needs assessment at multiple time points and leverage different platforms (e.g., text, MyChart, email) to maximize clinical effectiveness.
AYAs receive care across multiple clinics (e.g., disease groups, pediatric vs. adult)	Map workflows, engage stakeholders to anticipate implementation barriers, and formulate a plan for integrating administration of the tool to reduce the burden among providers and patients.
Institutional resource constraints	Leverage existing strategies to optimize a needs assessment tool (e.g., use of existing patient-reported outcome measures). Monitor system efficiencies to explore cost-effectiveness, patient and provider satisfaction, quality of care, and generate institutional support.
Addressing reported needs
Lack of organized documentation and follow-up	Clearly and systematically document reported needs that are accessible in a centralized location.
	Create referral pathways or follow-up action to address each unmet need.
	Create database of existing referral resources and build community-based partnerships.

Addressing reported needs

After administration of a needs assessment, robust processes for following up on reported needs are critical to improving cancer outcomes and equity. Needs assessment data must be systematically documented in a centralized location accessible to the providers tasked with addressing unmet needs. Each need assessed must have a corresponding referral pathway or follow-up action to address the need. Creating a detailed catalogue of existing services and resources available either in-house or through community partnerships can inform the identification of such referral pathways. Some studies have explored the automation of referrals. ²¹ However, responding to unmet needs often requires dedicated personnel to triage, refer, and ensure that services and resources are received.

There are resources to guide AYA programs in establishing processes to follow up on reported needs. CanTeen created an AYA Psychosocial Care Manual (https://www.canteen.org.au/health-education/measures-manuals/aya-oncology-psychosocial-care-manual), which provides guidance on how to create a care plan based on responses to the AYA POST. Likewise, NA-SB pairs a needs assessment with integrated referral pathways; Haines et al. recommend that, prior to implementing NA-SB, institutions tailor the map of referral pathways to resources available in their own setting.