Purpose
Shared decision-making in acute myeloid leukemia (AML) requires understanding patients’ longitudinal experiences of illness, but little is known about the impact of remission status on patient-reported outcomes (PROs). We aimed to explore the association between remission status and PROs 6-12 months following induction chemotherapy.
Methods
Forty-two patients completed three validated instruments characterizing symptom burden (Patient Care Monitor v2.0), distress (NCCN Distress Thermometer), and QOL (FACT-Leu), as part of a longitudinal observational study. We used regression models to explore the relationship between remission status and PROs, and explore differences by initial disease type (de novo versus secondary/relapsed AML).
Results
Those with secondary or relapsed AML at study onset had marked impairments in all measures compared to de novo AML patients. After 6 months, their mean distress score was 4.8 (≥4.0 warrants intervention), they reported a mean 14.1 moderate/severe symptoms, and had a mean QOL score of 113.6, compared to 1.0, 1.7, and 155.2, respectively, for those with de novo AML (p <.0001). Similarly, patients in relapse had a mean distress score of 5.3, a mean of 12.8 moderate/severe symptoms, and a mean QOL score of 113.4, compared to 1.8, 5.7, and 143.8, respectively, among those in remission (p<0.005). These patterns persisted after adjusting for baseline differences (p < .0001).
Conclusion
Remission status is associated with markedly better patient well-being in AML. Patients with secondary or relapsed AML face severe symptom burden, distress, and QOL issues after induction. Interventions are needed to improve AML patients’ experiences of illness.