Childhood Leukemia Treatment Disrupts Work, Finances for Most Families

More than 4 in 5 families of children receiving treatment for standard-risk B-cell acute lymphoblastic leukemia (B-ALL) reported a change in employment or marital status within about 26 months of diagnosis, and most of those disruptions began within the first 2 months of therapy, according to a study published in the October 2026 issue of JNCCN—Journal of the National Comprehensive Cancer Network.¹

Reducing the frequency of maintenance vincristine and dexamethasone pulses lowered the likelihood of leukemia-related expenses of $100 or more but did not improve household changes, family functioning, or parents' perceptions of their child's vulnerability, which suggests families need support from diagnosis onward regardless of treatment intensity.^1,2

How was the family outcomes study designed?

The prospective, longitudinal study was embedded in the Children's Oncology Group (COG) phase 3 trial AALL0932 (NCT01190930),⁷ which randomized children with NCI standard-risk, average-risk B-ALL to vincristine/dexamethasone pulses every 4 weeks (VCR/DEX4) or every 12 weeks (VCR/DEX12) during maintenance, with a 2 x 2 factorial randomization to an oral methotrexate starting dose of 20 or 40 mg/m2 per week.¹ The parent trial found no difference in 5-year survival between pulse schedules, and the less frequent schedule is now standard of care.^1,3

Patients enrolled from September 2010 through April 2013 at 153 institutions were eligible if they were aged 4 years or older, had an English-speaking parent, and had no history of a neurodevelopmental disorder.¹ Of 594 eligible participants, 555 completed at least 1 evaluation and 420 were randomized (VCR/DEX4, n = 225; VCR/DEX12, n = 195). The randomized children had a mean (SD) age of 6.⁰ (1.6) years, and 45.7% were female.¹

Parents completed surveys at approximately 2, 9, 18, 26, and 38 months after diagnosis (T1-T5; T5 in boys only, because maintenance lasted 2 years for girls and 3 years for boys).¹ The surveys measured:

• Household changes since diagnosis: no longer employed, reduced work hours, did not accept a job opportunity, or separated or divorced
• Leukemia-related expenses of $100 or more in the past 4 weeks across childcare, transportation, food, housing/hotel, and out-of-pocket medical costs
• Unhealthy family functioning, defined as a mean Family Assessment Device General Functioning score greater than 2
• Parent-perceived child vulnerability, defined as a Child Vulnerability Scale score of 10 or higher

T4 (approximately 26 months) served as the primary end point, and between-arm comparisons used outcomes at T3 and T4, adjusted for race, ethnicity, and outcomes near randomization.¹

How common were household changes after a child's B-ALL diagnosis?

Among randomized households, 56.2% reported at least 1 household change at T1, rising to 81.2% by T4.¹ By T4:

• 51.7% reported reduced work hours
• 42.6% reported a parent or spouse no longer employed
• 33.8% did not accept a job opportunity
• 10.0% were separated or divorced

The investigators noted that the 10.0% separation or divorce rate within about 2.5 years compares with an annual divorce rate of approximately 0.7% among US adults, an approximately 5-fold difference, although the study lacked data on parental age and other characteristics for a direct comparison.¹ Parents of non-Hispanic Black participants had higher odds than parents of non-Hispanic White participants of no longer being employed after randomization (odds ratio [OR], 20.48; 95% CI, 4.03-104.02; P = .0003), a finding the authors said may be limited by sample size.¹

What leukemia-related expenses did families report?

At T1, 88.6% of households reported $100 or more in leukemia-related expenses in the past 4 weeks in at least 1 category; at T4, 61.5% still did.¹ The most common categories were:

• Transportation: 69.3% at T1 and 35.4% at T4
• Food: 69.3% at T1 and 34.8% at T4
• Medical: 53.6% at T1 and 42.1% at T4

Did less frequent vincristine/dexamethasone pulses reduce family burden?

Families in the VCR/DEX4 arm more often reported postrandomization expenses of $100 or more than those in the VCR/DEX12 arm (74.2% vs 62.2%), a difference that held in multivariable models (OR, 1.73; 95% CI, 1.03-2.91).¹ In exploratory analyses at T4, VCR/DEX4 was associated with higher odds of medical expenses of $100 or more (OR, 2.66; 95% CI, 1.08-6.53). The authors suggested this may reflect costs of chemotherapy, supportive care medications, or management of adverse effects such as peripheral neuropathy, which was reported more frequently with VCR/DEX4 in the parent trial.¹

Other outcomes did not differ between arms. Among 104 households reporting no household change near randomization, the likelihood of a later change was similar (OR, 1.29; 95% CI, 0.56-2.98; P = .55).¹ Postrandomization unhealthy family functioning (OR, 0.57; 95% CI, 0.31-1.05) and perceived child vulnerability (OR, 1.07; 95% CI, 0.67-1.71) also did not differ.¹

How did family functioning and perceived vulnerability change over time?

Unhealthy family functioning was reported in 19.0% of randomized households at T1 and 23.9% at T4. Parent-perceived child vulnerability was reported in 55.8% at T1 and 62.5% at T4, higher than the 23% to 25% reported in prior studies of children with cancer during therapy.¹ The authors noted that vulnerability remained high during maintenance, a phase generally associated with less intensive treatment and a return to regular activities.¹

In an exploratory T4 analysis, VCR/DEX4 was associated with lower odds of unhealthy family functioning (OR, 0.43; 95% CI, 0.19-0.96), which the authors described as unexpected. They proposed that children receiving less frequent therapy may have had shorter visits and fewer opportunities for support from medical and social work teams.¹

What did the researchers say about supporting families?

"As providers, we should always be thinking about how to minimize the secondary impacts of cancer therapy," lead author Rozalyn L. Rodwin, MD, MHS, of Yale Cancer Center/Smilow Cancer Hospital, said in a news release. "These findings highlight how cancer therapy can impact a child's family financially, socially, and emotionally. Families are impacted early and continue to be impacted; therefore, support must be considered as part of cancer care from day one."²

"We had hoped this study would find that reduced treatment intensity led to reduced adverse family outcomes, but for the most part that wasn't the case. This highlights the need for family support regardless of treatment intensity," Rodwin said. "I think that as providers, we should routinely screen caregivers for financial toxicity, and also make sure to ask about unexpected employment changes, and other changes in the home so that families can be directed to appropriate resources."²

Melissa Acquazzino, MD, MS, of Fred & Pamela Buffett Cancer Center, who was not involved in the research and serves on the NCCN Guidelines panels for Pediatric Aggressive Mature B-Cell Lymphomas and Adolescent and Young Adult Oncology, said: "This study highlights critical findings that despite incredible improvements in survival for childhood B-ALL, the burden from treatment is still a really big deal." She added, "Significant financial hardship and family distress can develop early on in treatment and remain throughout, negatively impacting the child's physical and emotional health. Ongoing research and investment in multidisciplinary teams is needed to improve the experience and decrease any burden placed on our patients' families."²

How do these findings fit with other research on financial toxicity?

B-ALL is the most common childhood cancer, with survival exceeding 90%, but treatment lasts more than 2 years.¹ An earlier AALL0932 analysis found that reduced maintenance therapy did not improve patients' own quality of life, and the current study extends that finding to family outcomes.^1,4

Financial strain related to cancer care has been a recurring theme in recent Oncology Nursing News coverage. A nationwide claims analysis published in the Journal of Clinical Oncology found that most new prescriptions for specialty oral anticancer medications for blood cancers were rejected by insurers at first submission, and fill rates dropped once out-of-pocket costs exceeded $175.⁵ Beth Sandy, MSN, CRNP, of Penn Medicine's Abramson Cancer Center, has described a team-based workflow in which pharmacists and triage nurses share responsibility for prior authorizations, copay programs, and free-drug applications.⁶

The authors acknowledged several limitations. Participants who left before randomization were less likely to have US private or public insurance and more likely to report leukemia-related transportation or medical expenses. The study captured whether household events occurred, not whether they resolved, and data on parental mental health were not available. The $100 expense threshold was chosen because no standardized cut point exists.¹ Both arms also had an equal number of visits despite the reduced therapy in the VCR/DEX12 arm, which may have remained disruptive to families.¹

The study was funded by the National Cancer Institute, including the NCI Division of Cancer Prevention and the NCI Community Oncology Research Program, along with the St. Baldrick's Foundation. The authors reported no financial considerations related to the article.¹

What are the key takeaways for oncology nurses?

• Assess families at diagnosis: More than half of households reported a household change and 88.6% reported leukemia-related expenses of $100 or more within about 2 months of diagnosis.¹
• Reassess throughout therapy: Household changes rose to 81.2% by T4, and 61.5% of families still reported expenses of $100 or more, supporting longitudinal financial and psychosocial screening.¹
• Ask about work and home changes: Rodwin recommended routinely screening caregivers for financial toxicity and asking about unexpected employment and household changes so families can be connected with resources.²
• Plan for transportation and food costs: These were the most commonly reported expense categories early in therapy, and the authors noted that transportation costs can interfere with attendance at medical visits.¹
• Do not assume maintenance means less need: Perceived child vulnerability remained high during maintenance, and the authors emphasized ongoing access to medical and social work support even with less frequent treatment.¹
• Refer early: The authors highlighted financial risk assessment, referral to financial counseling, and reassessment over time, consistent with pediatric psychosocial standards of care.¹

References

1. Rodwin RL, Kairalla JA, Hibbitts E, et al. Adverse family outcomes in children with B-cell acute lymphoblastic leukemia from the multicenter trial Children's Oncology Group AALL0932. J Natl Compr Canc Netw. 2026;24(10):e267048. doi:10.6004/jnccn.2026.⁷⁰⁴⁸
2. Even highly curable childhood cancers take a substantial toll on families, according to new study from JNCCN. News release. National Comprehensive Cancer Network. October 13, 2026. Accessed October 28, 2026. https://www.nccn.org/home/news/newsdetails?NewsId=5663
3. Angiolillo AL, Schore RJ, Kairalla JA, et al. Excellent outcomes with reduced frequency of vincristine and dexamethasone pulses in standard-risk B-lymphoblastic leukemia: results from Children's Oncology Group AALL0932. J Clin Oncol. 2021;39:1437-1447.
4. Balsamo LM, Kairalla JA, Hibbitts E, et al. Diminished quality of life despite reduced treatment in children with B-lymphoblastic leukemia: Children's Oncology Group AALL0932. Pediatr Blood Cancer. 2026;73:e70029.
5. Prior authorization, costs limit access to oral blood cancer drugs. Oncology Nursing News. October 2, 2026. Accessed October 28, 2026. https://www.oncnursingnews.com/view/prior-authorization-costs-limit-access-to-oral-blood-cancer-drugs
6. Sandy B. Addressing financial toxicity: team-based workflows in oncology care. Oncology Nursing News. September 3, 2026. Accessed October 28, 2026. https://www.oncnursingnews.com/view/addressing-financial-toxicity-team-based-workflows-in-oncology-care
7. Treatment of patients with newly diagnosed standard risk B-lymphoblastic leukemia (B-ALL) or localized B-lineage lymphoblastic lymphoma (B-LLy). ClinicalTrials.gov identifier: NCT01190930. Accessed October 28, 2026. https://clinicaltrials.gov/study/NCT01190930