title: 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.
  
  
  METHODS
  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]).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Yale School of Medicine, New Haven, Connecticut.
authors.forename: Samantha
authors.initials: S
authors.lastname: Lau
authors.forename: Xiaomin
authors.initials: X
authors.lastname: Lu
authors.forename: Lyn
authors.initials: L
authors.lastname: Balsamo
authors.forename: Meenakshi
authors.initials: M
authors.lastname: Devidas
authors.forename: Naomi
authors.initials: N
authors.lastname: Winick
authors.forename: Stephen P
authors.initials: SP
authors.lastname: Hunger
authors.forename: William
authors.initials: W
authors.lastname: Carroll
authors.forename: Linda
authors.initials: L
authors.lastname: Stork
authors.forename: Kelly
authors.initials: K
authors.lastname: Maloney
authors.forename: Nina
authors.initials: N
authors.lastname: Kadan-Lottick
mesh_terms: D002648:Child; D002675:Child, Preschool; D005195:Family Relations; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007182:Income; D007223:Infant; D008016:Life Change Events; D008137:Longitudinal Studies; D008297:Male; D008393:Marriage; D010290:Parents / Q000523:psychology*; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000523:psychology* / Q000628:therapy*; D011379:Prognosis; D011446:Prospective Studies; D013315:Stress, Psychological
keywords: family coping/functioning; leukemia; pediatric cancer