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.

The impact of childhood cancer on parents' socio‐economic situation—A systematic review

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Household income and risk‐of‐poverty of parents of long‐term childhood cancer survivors

“…Managing the child's disease and treatment alongside everyday responsibilities can be highly challenging for parents. Several studies demonstrated that treatment‐related work disruptions such as time off work, quitting or reducing workload are frequent among parents of patients with childhood cancer . These work disruptions resulted in substantial income losses .…”

Psychosocial Interventions and Therapeutic Support as a Standard of Care in Pediatric Oncology

“…Numerous studies document that children diagnosed with cancer experience various forms of distress associated with the cancer experience . Cancer and its associated treatment can have a serious social and emotional impact on the child and the parent . Much data indicate that child functioning is closely associated and often dependent on parent and family functioning .…”