High symptom burden and poor prognosis faced by adolescents and young adults (AYAs; aged 15–29) with advanced or recurrent cancer significantly impact their sense of identity and purpose as they work to achieve developmentally significant goals. The combination of high symptom burden and goal interference may exacerbate suffering, yet palliative care interventions have not addressed the co-occurring symptom management and existential concerns of this population.
Methods:
Guided by the NIH Stage Model, we systematically developed a psychosocial symptom management intervention to address the needs of AYAs with advanced or recurrent cancer. Quantitative and qualitative data were obtained from AYAs (N = 20) and caregivers (N = 13) who completed semi-structured interviews and self-report measures to assist with intervention development of refinement. Rapid qualitative analysis was used.
Results:
Intervention development interviews confirmed high symptom burden and the need to develop a psychosocial symptom management intervention targeting this population. A four-session intervention (“SMILE: Symptom Management for Improved PhysicaL and Emotional Wellbeing”) was developed integrating behavioral symptom coping strategies with strategies from Meaning-Centered Psychotherapy and Acceptance and Commitment Therapy to (a) reduce symptom burden and interference and (b) promote engagement in values-driven, meaningful action in the face of life-limiting illness. Refinement sessions assisted with further clarifying concepts, tailoring the intervention to the population, and honing protocols.
Conclusions:
SMILE is a novel integration of three evidence-based approaches to provide AYAs skills to address symptoms that interfere with valued and meaningful action. The feasibility and acceptability of SMILE will next be examined in a pilot randomized controlled trial.
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