Symptom burden trajectories experienced by patients with brain tumors

Abstract

BackgroundSurvivors of childhood brain tumors experience persistent health concerns across their lifespan. In the current study, the authors evaluated changes in symptom burden over the course of 12 months using pediatric Patient‐Reported Outcomes Measurement Information System (PROMIS) measures.MethodsData from 202 survivors aged 8 to 21 years and 262 parents of survivors who were aged 5 to 21 years were analyzed. All completed a PROMIS Cognition short form and computerized adaptive tests of pediatric Anxiety, Depressive Symptoms, Fatigue, Mobility, Upper Extremity Function, and Peer Relationships. Approximately one‐half of participants (223 participants: 97 survivors of childhood brain tumors and 126 parents) completed the 12‐month follow‐up. Linear mixed‐effects models evaluated group‐level symptoms over time. Cox proportional hazard models explored whether symptoms predicted survival, and latent class growth analysis investigated patterns of individual‐level symptom changes over time.ResultsLinear mixed‐effects models demonstrated that patient‐reported Cognition and parent‐reported Anxiety worsened over time. Latent class growth analysis results indicated that patient and parent reports diverged, both with regard to the number of classes identified and in the trends of these classes. Parents and patients reported similar patterns of depression over time. For the other areas, parents either were more likely to observe different patterns (Peer Relationships and Mobility) or less likely to observe different patterns (Upper Extremity Function, Cognition, Anxiety, and Fatigue). Baseline patient‐reported Mobility and Upper Extremity Function were found to be associated with survival.ConclusionsSurvivors of childhood brain tumors demonstrated different trajectory patterns of symptom burden. Along with baseline functioning status and days since treatment, patient‐reported Mobility and Upper Extremity Function were associated with survival, suggesting a possible role for patient‐reported outcomes in clinical care, especially individualized, tailored assessments such as PROMIS.

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“…It has been speculated that child and adolescent patients might not want or are unwilling to communicate with their parents or medical providers about psychosocial concerns for various reasons, such as not wanting to increase their parents' worries and/ or wanting to be good patients (Lai et al, 2020). Parents can be unaware of the specific difficulties that their children face and discordance between parent and child reports is common (Theunissen et al, 1998;Wiener et al, 2014Wiener et al, , 2017.…”