Adolescents and Young Adults With Acute Lymphoblastic Leukemia: Qualitative Barriers and Facilitators to Guideline-Concordant Care

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Introduction Progress in acute lymphoblastic leukemia (ALL) affecting adolescents and young adults (AYAs), aged 15-39 years, has been challenged by aggressive disease biology, low clinical trial participation, unique supportive care needs, and heterogeneity across treatment settings with lack of age-based standardized therapy. In 2012, the National Comprehensive Cancer Network (NCCN) first issued AYA ALL treatment guidelines. In the absence of formal evaluation of the 2012 NCCN guidelines on the delivery of guideline-concordant care at National Cancer Institute (NCI) Community Oncology Research Program (NCORP) practices, we conducted a qualitative study, as part of the Children’s Oncology Group-led cancer care delivery trial ACCL16N1CD. Methods Structured focus groups, moderated by study members, were convened to identify barriers and facilitators to NCCN guideline-concordant treatment delivery and documentation . Healthcare professionals at NCORP sites that activated ACCL16N1CD were invited to participate if they were involved in AYA ALL care. Nine focus groups were held with 55 participants. Nominal group technique was used to rank statements about delivery and documentation. Qualitative data were analyzed using directed content analysis methodology to describe facilitators and barriers and assess emerging themes. Results Five main themes were identified for delivery (Care Model, Care Organization, Supportive Care, Therapeutic Approach, Individual Factors [patient; provider]) and six for documentation (Care Model, Hospital Type, Care Organization, Supportive Care, Therapeutic Approach, Individual Factors) of NCCN-concordant treatment. Supportive Care was ranked first for delivery of guideline-concordant care and Care Organization was ranked first for documentation, with Individual Factors ranking close behind for both. Theme ranking varied by focus group type and professional roles of participants. Conclusion Identified barriers and facilitators impacting guideline-concordant care of AYA ALL across NCORPs were aligned with institutional supportive care resources, care organization for AYA, and individual factors. Top ranked statements may be utilized as implementation strategies in future care delivery trials.

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