Family life events in the first year of acute lymphoblastic leukemia therapy: a children's oncology group report

Abstract

Background: Despite higher cure rates, childhood acute lymphoblastic leukemia (ALL) may continue to result in considerable family strain. We sought to (i) measure incidence of divorce, reduced career opportunities, changes to work hours, home relocation, and changes to family planning at one year after ALL diagnosis; and (ii) Identify family and patient factors associated with these events.

Procedure: We conducted a prospective cohort study of 159 children with average risk-ALL enrolled and treated on COG protocol AALL0331 at 31 selected sites. Eligibility criteria included age ≥2 years and English or Spanish comprehension. Parents completed surveys at three time points during the first 12 months of therapy.

Results: Parents were at significantly increased risk of loss of employment (46% vs. 9.1%, P ≤ 0.001) than peers nationally. 13% divorced/separated, 27% relocated homes, 22% decided not to have more children, 51% declined occupational opportunities, and 68% decreased work hours. In adjusted analyses, relocation correlated with less maternal education (OR: 4.27 [95% CI: 1.43-12.82]). Declining parental opportunities associated with family income <$50,000 (OR: 4.25 [95% CI: 1.50-12.02]) and child <5 years old (OR: 4.21 [95% CI: 1.73-10.25]). Deciding not to have more children correlated with smaller family size 2-3 versus 4-5 (OR: 3.62 [95% CI: 1.10-11.96]).

Conclusion: Families experience a high incidence of major life changes in the first year of ALL treatment. Understanding these burdens helps health care providers to provide appropriate anticipatory guidance and support. No unifying factor was associated with the different family events. Ongoing follow-up is planned to measure long-term outcomes.

Keywords: family coping/functioning; leukemia; pediatric cancer.

Fig. 1

Cumulative incidence of family life events in the first year of treatment of ALL. (A)Work Hours. (B) Marital Status and Family Planning. (C) Declined New Occupational/Educational Opportunities. (D) Moved to Different Home. The increase in frequencies of outcomes between time points are statistically significant for all events at a significance level of P < 0.05, except for frequency changes from time point 2–3 for divorce/separation, increased work hours, and decreased work hours. *Among those married or living together as married prior at diagnosis.