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Family life events in the first year of acute lymphoblastic leukemia therapy: A children's oncology group report
Author(s) -
Lau Samantha,
Lu Xiaomin,
Balsamo Lyn,
Devidas Meenakshi,
Winick Naomi,
Hunger Stephen P.,
Carroll William,
Stork Linda,
Maloney Kelly,
KadanLottick Nina
Publication year - 2014
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25195
Subject(s) - medicine , relocation , incidence (geometry) , lymphoblastic leukemia , pediatrics , cohort , cumulative incidence , demography , prospective cohort study , gerontology , family medicine , leukemia , physics , sociology , computer science , optics , programming language
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. Pediatr Blood Cancer 2014;61:2277–2284. © 2014 Wiley Periodicals, Inc.