Background: Financial hardship is the combined effect of medical expenditures, out of pocket expenses, and the impact of a cancer diagnosis and treatment on work. Productivity loss is a measure of work engagement, specifically missed time and/or altered performance, experienced by parent caregivers of children with cancer in the form of missed time from work and/or altered performance at work. Health-related quality of life (HRQL) is an important indicator of the disease process and its functional consequences among children at the time of initial diagnosis with cancer. The association of parental productivity loss with the child's HRQL is unknown.

Methods: Two hundred ninety-one parent caregivers of children and adolescents, ages 5-17.9 years with newly diagnosed advanced stage Hodgkin Lymphoma (HL) were invited to participate in a study to assess costs of care as part of a larger Children's Oncology Group Phase III trial. Consenting parents completed the Caregiver Work Limitations Questionnaire (CG WLQ) and the Child Health Ratings Inventories (CHRIs)-Global Health measure prior to start of therapy. The CG WLQ is a validated 23-item measure, which quantifies the percent of time respondents had difficulty performing four key dimensions of work because of caregiving: physical tasks, mental-interpersonal tasks, output tasks, and time management. Mean scale scores (SD), ranging from 0-100, indicate the percentage of time the respondent reported work limitations by dimension in the month prior to diagnosis. The estimated productivity loss score, expressed as a percentage of time, is calculated from the weighted sum of the four scale scores, using an established algorithm validated in the generic WLQ. This is then monetized by multiplying the productivity loss score by the national average wage index of $50,000. The 10-item CHRIs-Global is a parent-proxy report of child HRQL and yields scores that range from 0-100, with higher scores indicating better HRQL. To describe how CG WLQ varied by child global HRQL, CG WLQ scores were reported separately for the lowest quartile of HRQL scores (Q1) and quartiles 2-4 combined (Q2-4). Mean (SD) productivity loss scores were compared using the two-sample t-test.

Results: Two hundred eighty-two parents of trial participants (282/291, 97%) completed any baseline measures. Of the 242 parents who initiated the CG WLQ, 159 (66%) reported working at a paying job and were eligible to complete the remainder of the measure. The average age (SD) of caregiver respondents was 43.8 (6.9) years with 75.3% female, 74.7% White and 63.7% with at least some college education. The average age of the child with HL was 15 (2.8) years and 55% were male. The mean HRQL score was 65.2 (21.9). On average CG WLQ scores indicated that the caregiving role resulted in disrupted work tasks at least 31.4% (27.6) of the time (Table). The average percent of time that caregiving disrupted mental-interpersonal tasks, output tasks, and time management was higher in working caregivers of children with HRQL scores in the lowest quartile compared to higher quartiles. The productivity loss score was higher for caregivers whose children had lower HRQL, resulting in larger annual productivity costs.

Conclusions: Family caregivers of child and adolescent HL patients are vulnerable to productivity loss, which is costly to the families, employers and the nation. High productivity losses noted at initial diagnosis indicate that financial hardship begins prior to the start of cancer treatment. Provider understanding of the association of the child's HRQL on the caregiver's work will inform strategies to maximize adherence to intensive chemotherapy and improve patients' HRQL.


Parsons:Seattle Genetics: Research Funding. Henderson:Seattle Genetics: Research Funding.

Author notes


Asterisk with author names denotes non-ASH members.

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