Profiles of Fatigue and Psychological Symptoms in Long-Term Childhood, Adolescent, and Young Adult Cancer Survivors-The NOR-CAYACS Study

Abstract

Introduction: Long-term childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of fatigue and psychological problems. However, their interactions remain largely unexplored. Understanding how they cluster can inform treatment and person-centered follow-up care. We aimed to identify and describe profiles of co-occurring fatigue and psychological symptoms and investigate their associations with health-related quality of life (HRQOL) in CAYACS.

Methods: NOR-CAYACS (The Norwegian Childhood, Adolescents and Young Adult Cancer Survivors study) was a nationwide survey involving adult survivors of any childhood cancer (aged < 19 years at diagnosis) and selected young adult cancers (breast and colorectal cancers, non-Hodgkin lymphoma, leukemias, and malignant melanomas, aged 19-39 years at diagnosis) identified through the Cancer Registry of Norway. We included 1893 survivors aged ≥ 18 years, ≥ 5 years since diagnosis. We performed latent profile analysis with six continuous outcomes: physical and mental fatigue, depression, anxiety, post-traumatic stress symptoms, and fear of recurrence.

Results: We identified an overall "Low" (64%), a "Moderate fatigue/high anxiety" (18%), a "High fatigue/moderate distress" (13%), and an overall "High" (5%) symptom burden profile. The "High" profile exhibited lowest physical- and mental-HRQOL with T-scores -9.8 (95% confidence interval [95% CI]: -12.5, -7.1) and -25.0 (95% CI: -26.7, -23.3) compared to the "Low" profile.

Conclusion: We identified four profiles, two characterized by high fatigue and two near normative fatigue levels, each with different psychological symptom burden. Greater symptom burden corresponded to lower HRQOL, with high fatigue profiles showing lower physical HRQOL. These profiles help identify at-risk individuals and allow for targeting interventions and follow-up care to survivors' unique constellation of symptoms.

Keywords: CAYACS; HRQOL; fatigue; latent profile analysis; long‐term survivors; psychological symptoms.

FIGURE 1

Estimated marginal mean T‐scores for fatigue and psychological symptom burdens for the four identified latent profiles (N = 1893). Figure 1 shows the marginal mean T‐scores (darker solid and dashed lines) with 95% confidence intervals (light colored areas) for each of the four identified latent fatigue and psychological symptom profiles. T‐score is a standardized scale from 0 to 100 for all outcomes. Exact estimates are provided in Table 2. ◇ Normative scores for fatigue, depressive symptoms, and anxiety symptoms from Norwegian populations (Dahl et al.; Grov et al.) [30, 31]. PTSS, post‐traumatic stress symptoms.

FIGURE 2

Sankey diagram of reallocation of survivors with the increasing number of latent profiles. Figure 2 shows reallocation of sample individuals by assignment to profile with highest probability (modal assignment) with the increasing number of profiles identified. Each latent profile analysis was run until the model converged. Percentages represent the proportion of each profile within each model. N, number of participants in each profile.