Beyond remission: Sexual health and quality of life in survivors of acute leukemia Free

Introduction: Although treatment for acute leukemias is typically intensive and prolonged, advances in therapy have significantly improved survival outcomes. However, their long term consequences particularly in the psychosocial domain remain insufficiently explored. While hematologic and metabolic toxicities are well characterized, sexual function and emotional well-being have received considerably less attention, despite their critical role in overall quality of life. Modern survivorship care must extend beyond disease surveillance to address the broader, often invisible consequences of cancer and its treatment most notably, those affecting sexual health.

Objective: To assess sexual quality of life, general health status, and self-esteem in survivors of acute leukemia following intensive chemotherapy, compared to healthy matched controls.

Methods: A cross-sectional case-control study was conducted including survivors of acute leukemia in maintenance or surveillance phases, matched with healthy controls by age, sex, and comorbidities. Participants completed three validated instruments in Spanish: Sexual Health Questionnaire (SHQ-22), the EQ-5D-5L general health scale, and the Rosenberg Self-Esteem Scale. The EQ-5D index was calculated based on the responses to the five dimensions of the EQ-5D-5L questionnaire; utility scores were derived using the Spanish value set. Group comparisons were performed using the Wilcoxon test, Fisher's exact test, and Pearson correlations. Statistical significance was defined as p<0.05. Analyses were conducted in R version 4.x.

Results: A total of 202 participants were included: 102 acute leukemia survivors and 100 matched healthy controls.

Among survivors, 62.1% were female, with a median age of 32 years (range: 18–74). Most were diagnosed with ALL (70.6%), followed by APL (18.6%). At the time of the study, 78.6% were under clinical surveillance and 20.6% were receiving maintenance therapy. The most common comorbidity was diabetes (12.6%).

On the SHQ-22 scale, survivors reported a significantly greater negative impact of treatment on their sexual lives (mean score 1.41 vs. 0.91; p<0.001), more pain or discomfort during sexual activity (1.61 vs. 1.31; p=0.013), and lower satisfaction with partner communication regarding sexuality (1.67 vs. 2.11; p=0.012).

Regarding gender self-perception, female survivors reported feeling significantly less feminine female compared to female controls (1.35 vs. 1.03; p=0.027).

Assessment of general quality of life using the EQ-5D-5L showed that only 28% of survivors reported a “perfect” health profile, compared to 55% of controls (p=0.0002; OR=3.06; 95% CI: 1.65–5.76), with the most frequently affected dimensions being mobility (p<0.001), the ability to carry out usual daily activities (p<0.001), and the presence of pain or discomfort (p<0.001). The median EQ-5D index score was also significantly lower in the survivor group (0.919 vs. 1.000; p<0.001).

No significant differences were observed in overall self-esteem scores between survivors and controls (p=0.226); however, survivors who had previously received radiotherapy showed significantly lower self-esteem levels (p=0.018). Likewise, sexual health scores were significantly correlated with both general quality of life (r=–0.32; p<0.001) and self-esteem (r=–0.30; p<0.001), indicating that lower well-being and self-image were associated with poorer perceived sexual health.

There were no significant differences in any of the outcome measures between patients in maintenance versus those in surveillance.

In multivariate regression analysis, independent predictors of worse sexual quality of life included lower EQ-5D index (p=0.011), low self-esteem (p=0.006), medium self-esteem (p=0.0005), and older age (p=0.0008).

Conclusions: This study highlights an often overlooked aspect of survivorship care in leukemia: sexual health. Survivors frequently report disruptions in sexual function, including treatment related changes, discomfort during intercourse, and challenges in sexual communication. Additionally, diminished quality of life, lower self-esteem, and older age are independently associated with poorer perceptions of sexual well-being. These findings underscore the need for structured, multidisciplinary survivorship care that explicitly includes psychosocial and sexual health assessments, to ensure a more comprehensive and human centered approach to recovery.