Characterizing Difficulty and Life Disruption During B-Acute Lymphoblastic Leukemia Therapy From the Perspective of Parents: A Survey Study.

Abstract

Purpose: Children with B-acute lymphoblastic leukemia (B-ALL) treated in resource-intensive settings have a high likelihood of cure, but therapy is long, burdensome, and associated with substantial toxicities. Understanding parents' perceptions of the most disruptive and difficult aspects of B-ALL treatment is critical to future improvements in care. We aimed to understand which child side effects, chemotherapeutic agents, and aspects of leukemia care are rated difficult or disruptive by parents, and variations based on parent or child characteristics.

Methods: Parents of children (1-19 years) currently or previously treated for B-ALL who are members of the Momcology pediatric cancer support and advocacy organization were invited to complete an online survey on difficult and disruptive aspects associated with their child's diagnosis. Data were analyzed descriptively, and inferential statistical tests evaluated characteristic-based differences.

Results: Parents of 442 children completed the survey. Nausea/vomiting was the most commonly reported difficult side effect during pre-maintenance therapy (55.4%), followed by decreased energy (41.4%) and neuropathy (40.7%). Mood changes were the most difficult side effect during maintenance therapy (29.3%). The extent of difficulty associated with each side effect reported was high. Most parents (79.6%) rated oral corticosteroids as the most difficult chemotherapeutic agent. The components of care most difficult and disruptive were unplanned hospital visits (79.9%) and compromised immunity (76.9%). Parent-rated difficulties significantly varied by child age at diagnosis.

Conclusions: Parents of children with B-ALL report substantial child and family difficulties that are directly attributable to leukemia treatment. These findings should inform areas of investigation for optimizing treatment regimens and supportive care.