"I felt so seen": Perspectives on age-appropriate, needs-based survivorship care among young adult survivors of childhood, adolescent, or young adult cancers (CAYA).
Survivors of childhood, adolescent, and young adult cancers (CAYA) experience unique survivorship needs that are often unaddressed. We characterized young adult CAYA survivors' perspectives on the acceptability and utility of a novel model for routinely identifying and addressing their needs in survivorship care.
Our onco-primary care program implemented routine needs-based care using age-appropriate needs and distress screening at survivorship visits. Survivors completed a screener and ranked their top three concerns for discussion, and clinicians discussed and addressed survivors' prioritized concerns. Research personnel recruited English-speaking survivors ages 18-39 with a history of cancer during their clinic visit. Twelve survivors completed semi-structured interviews about their needs-based care experience. We conducted iterative thematic content analysis to identify themes.
The sample was 41.7% male and included some diversity of race and ethnicity (e.g., 16.7% Asian American, 25.0% Hispanic). We defined five themes: (1) Being asked relevant, age-appropriate questions made survivors feel "seen" and enhanced connection to the care team. (2) The model helped survivors identify their concerns and overcome barriers to talking about them with the clinician. (3) Prioritizing concerns was challenging but facilitated focus in the visit. (4) Completing the assessment at the visit and at every visit was acceptable. (5) Survivors were satisfied with communication and how their needs were addressed.
Young adult CAYA survivors had positive perceptions of routine age-appropriate needs assessment followed by clinician discussion in survivorship. This model was relevant, useful, and acceptable, and enhanced their perceptions of providers and satisfaction with care.
Our onco-primary care program implemented routine needs-based care using age-appropriate needs and distress screening at survivorship visits. Survivors completed a screener and ranked their top three concerns for discussion, and clinicians discussed and addressed survivors' prioritized concerns. Research personnel recruited English-speaking survivors ages 18-39 with a history of cancer during their clinic visit. Twelve survivors completed semi-structured interviews about their needs-based care experience. We conducted iterative thematic content analysis to identify themes.
The sample was 41.7% male and included some diversity of race and ethnicity (e.g., 16.7% Asian American, 25.0% Hispanic). We defined five themes: (1) Being asked relevant, age-appropriate questions made survivors feel "seen" and enhanced connection to the care team. (2) The model helped survivors identify their concerns and overcome barriers to talking about them with the clinician. (3) Prioritizing concerns was challenging but facilitated focus in the visit. (4) Completing the assessment at the visit and at every visit was acceptable. (5) Survivors were satisfied with communication and how their needs were addressed.
Young adult CAYA survivors had positive perceptions of routine age-appropriate needs assessment followed by clinician discussion in survivorship. This model was relevant, useful, and acceptable, and enhanced their perceptions of providers and satisfaction with care.
Authors
Betts Betts, Jacobs Jacobs, Overholt Overholt, Russell Russell, Shear Shear, Smith McGuire Smith McGuire, Shi Shi, Harbison Harbison, Eary Eary, Rodriguez Rodriguez, Hall Hall
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