Determinants of health-related quality-of-life in adult survivors of childhood cancer: integrating personal and societal values through a health utility approach

Abstract

Background: Childhood cancer survivors are at elevated risk for poor health-related quality-of-life (HRQOL). Identification of potentially modifiable risk factors associated with HRQOL is needed to inform survivorship care.

Methods: Participants included 4294 adult childhood cancer survivors from the St. Jude Lifetime Cohort Study who completed a survey and clinical assessment at entry into the survivorship cohort (baseline) and follow-up (median interval: 4.3 years) between 2007 and 2019. The SF-6D compared utility-based HRQOL of survivors to an independent sample from the U.S. Medical Expenditures Panel Survey. Chronic health conditions (CHCs) were graded using modified Common Terminology Criteria for Adverse Events. General linear models examined cross-sectional and temporal associations of HRQOL with CHC burden (total and by organ-system), adjusting for potential risk factors.

Findings: Survivors reported poorer HRQOL compared to the general population (effect size [d] = -0.343). In cross-sectional analyses at baseline, significant non-demographic risk factors included higher total CHC burden (driven by more severe cardiovascular [d = -0.119, p = 0.002], endocrine [d = -0.112, p = 0.001], gastrointestinal [d = -0.226, p < 0.001], immunologic [d = -0.168, p = 0.035], neurologic [d = -0.388, p < 0.001], pulmonary [d = -0.132, p = 0.003] CHCs), public (d = -0.503, p < 0.001) or no health insurance (d = -0.123, p = 0.007), current smoking (d = -0.270, p < 0.001), being physically inactive (d = -0.129, p < 0.001), ever using illicit drugs (d = -0.235, p < 0.001), and worse diet quality (d = -0.004, p = 0.016). In temporal analyses, poorer utility-based HRQOL at follow-up was associated with risk factors at baseline, including higher total CHC burden (driven by cardiovascular [d = -0.152, p = 0.002], endocrine [d = -0.092, p = 0.047], musculoskeletal [d = -0.160, p = 0.016], neurologic [d = -0.318, p < 0.001] CHCs), public (d = -0.415, p < 0.001) or no health insurance (d = -0.161, p = 0.007), current smoking (d = -0.218, p = 0.001), and ever using illicit drugs (d = -0.217, p < 0.001).

Interpretation: Adult survivors report worse utility-based HRQOL than the general population, and potentially modifiable risk factors were associated with HRQOL. Interventions to prevent the early onset of CHCs, promote healthy lifestyle, and ensure access to health insurance in the early survivorship stage may provide opportunities to improve HRQOL.

Funding: The research reported in this manuscript was supported by the U.S. National Cancer Institute under award numbers U01CA195547 (Hudson/Ness), R01CA238368 (Huang/Baker), R01CA258193 (Huang/Yasui), R01CA270157 (Bhakta/Yasui), and T32CA225590 (Krull). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.

Keywords: Childhood cancer survivors; Chronic health conditions; Determinants; Health utility; Quality-of-life.

Fig. 1

Differences in utility-based HRQOL scores between cancer survivors having CHCs by 13 organ systems and total burden compared to the general population. Note: HRQOL = health-related quality-of-life; CHC = chronic health condition; G2 = grade 2 of the Common Terminology Criteria for Adverse Events. Utility-based HRQOL is based on SF-12 for both samples because that was the only available version in the MEPS dataset. For comparing utility-based HRQOL scores between survivors and the general population, average HRQOL scores of survivors were standardized based on age (i.e., 18–29, 30–39, 40–49, 50–59, 60+ years old) and sex (i.e., male, female) of the MEPS general population. Effect sizes for the difference between survivors and the general population were calculated by subtracting the average age and sex-matched MEPS HRQOL score from the HRQOL score of each SJLIFE survivor then dividing by the SD of age and sex-matched MEPS HRQOL score. On the Y axis, zero represents the average utility-based HRQOL for the general population from the MEPS, n = 78,238. The gold reference line is an effect size = 0.2 lower than the general population mean; the orange reference line is an effect size = 0.5 lower than the general population mean; the red reference line is an effect size = 0.8 lower than the general population mean. Effect sizes beyond these lines indicate small, moderate, and large effects, respectively, compared to the general population's average score. Chronic health condition categories on X axis are sorted from smallest to largest based on the utility-based HRQOL effect sizes for CHCs graded greater than or equal to 2. In the effect size table, the gold highlight is an effect size less than or equal to −0.2 and greater than −0.5, the orange highlight is an effect size less than or equal to −0.5 and greater than −0.8, and the red highlight is an effect size less than or equal to −0.8 compared to the general population mean.