With increasing survival rates of adolescents and young adults (AYAs) with breast cancer, health-related quality of life (HRQoL) becomes more important. An important aspect of HRQoL is sexual QoL. This study examined long-term sexual QoL of AYA breast cancer survivors, compared sexual QoL scores with that of other AYA cancer survivors, and identified factors associated with long-term sexual QoL of AYA breast cancer survivors. Data of the SURVAYA study were utilized for secondary analyses. Sexual QoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire (EORTC QLQ-SURV100). Descriptive statistics were used to describe sexual QoL of AYA cancer survivors. Linear regression models were constructed to examine the effect of cancer type on sexual QoL and to identify factors associated with sexual QoL. Of the 4010 AYA cancer survivors, 944 had breast cancer. Mean sexual QoL scores of AYA breast cancer survivors ranged from 34.5 to 60.0 for functional domains and from 25.2 to 41.5 for symptom-orientated domains. AYA breast cancer survivors reported significantly lower sexual QoL compared to AYA survivors of other cancer types on all domains. Age, time since diagnosis, relationship status, educational level, chemotherapy, hormonal therapy, breast surgery, body image, and coping were associated with sexual QoL of AYA breast cancer survivors. AYA breast cancer survivors experience decreased sexual QoL in the long term (5-20 years) after diagnosis and worse score compared to AYA survivors of other cancer types, indicating a clear need to invest in supportive care interventions for those at risk, to enhance sexual well-being.

Purpose: As life expectancy continues to rise, post-treatment health-related quality of life (HRQoL) of breast cancer patients becomes increasingly important. This study examined the one-year longitudinal relation between axillary treatments and physical, psychosocial, and sexual wellbeing and arm symptoms. Methods: Women diagnosed with breast cancer who received different axillary treatments being axilla preserving surgery (APS) with or without axillary radiotherapy or full axillary lymph node dissection (ALND) with or without axillary radiotherapy were included. HRQoL was assessed at baseline, 6- and 12-months postoperatively using the BREAST-Q and the European Organization for Research and Treatment of Cancer QoL Questionnaire Breast Cancer Module (EORTC QLQ-BR23). Mixed regression models were constructed to assess the impact of axillary treatment on HRQoL. HRQoL at baseline was compared to HRQoL at 6- and at 12-months postoperatively. Results: In total, 552 patients were included in the mixed regressions models. Except for ALND with axillary radiotherapy, no significant differences in physical and psychosocial wellbeing were found. Physical wellbeing decreased significantly between baseline and 6- and 12-months postoperatively (p < 0.001, p = 0.035) and psychosocial wellbeing decreased significantly between baseline and 12 months postoperatively (p = 0.028) for ALND with axillary radiotherapy compared to APS alone. Arm symptoms increased significantly between baseline and 6 months and between baseline and 12 months postoperatively for APS with radiotherapy (12.71, 13.73) and for ALND with radiotherapy (13.93, 16.14), with the lowest increase in arm symptoms for ALND without radiotherapy (6.85, 7.66), compared to APS alone (p < 0.05). Conclusion: Physical and psychosocial wellbeing decreased significantly for ALND with radiotherapy compared to APS alone. Shared decision making and expectation management pre-treatment could be strengthened by discussing arm symptoms per axillary treatment with the patient.

Purpose: As the prognosis for adolescents and young adults (AYAs) with breast cancer has improved, long-term health-related quality of life (HRQoL) has become increasingly important. This study aimed to analyze the long-term HRQoL of AYA breast cancer survivors compared to an age-matched normative population and to identify factors associated with HRQoL. Methods: Secondary analyses were conducted using data from the SURVAYA study. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) was used to assess HRQoL. The Mann–Whitney U test was used to compare HRQoL scores of AYA breast cancer survivors with those of the normative population (n = 409). Linear regression models were constructed to identify patient and treatment characteristics associated with HRQoL. Results: A total of 944 female AYA breast cancer survivors were included, with a median age of 36.0 years and a median follow-up of 12.2 years. AYA breast cancer survivors scored significantly lower on five functional scales: physical, role, emotional, cognitive, and social, and higher on five symptom scales: fatigue, pain, dyspnea, insomnia, and financial impact compared to the normative population. Being in a relationship, having a positive body image, and adaptive coping were positively associated with HRQoL, while older age, chemotherapy, unemployment, and maladaptive coping were negatively associated. Conclusion: AYA breast cancer survivors experience significantly compromised long-term HRQoL compared to an age-matched normative population. These results highlight the need for tailored follow-up care and long-term support, as well as the importance of shared decision-making about the benefits and risks of treatments before initiation.

Purpose: This study reports the findings from the ADAPT randomized controlled trial (RCT), concerning the impact of a digital tool for supported self-management in people affected by breast cancer on patient activation as the primary outcome, with health-related quality of life (HRQoL), and health status as secondary outcomes. Methods: Women with early-stage breast cancer were randomly assigned to standard care (control) or standard care in addition to the breast cancer digital tool (intervention). Data were collected using a demographic questionnaire, the Patient Activation Measure (PAM-13), the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), and the EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) at baseline, 6 weeks, 3 months, 6 months, and 1 year from diagnosis. Linear mixed effect model regression was used to assess the effect of the digital tool over the first year from diagnosis while correcting for intra-participant correlation. Results: A total of 166 participants were included, with 85 being randomized into the intervention. No significant differences (p > 0.05) in the PAM-13 scores, EORTC QLQ-C30 scales (global QoL, physical functioning, emotional functioning, pain, fatigue), and EQ-5D-5L Index between the control and intervention groups were observed. It is important to note that there was significant non-adherence within the intervention group. Conclusion: The breast cancer digital tool had no statistically significant impact on patient activation, HRQoL, and health status over time compared to standard care alone in women with early-stage breast cancer. Future research should focus on identifying and addressing barriers to digital tool engagement to improve efficacy. Clinical trial information The study was registered at https://clinicaltrials.gov (NCT03866655) on 7 March 2019 (https://clinicaltrials.gov/study/NCT03866655).

Conditional relative survival (CRS), the probability of survival given that an individual has already survived a certain period post-diagnosis, is a more clinically relevant measure for long-term survival than standard relative survival (RS). This study aims to evaluate the 5-year CRS among adolescent and young adult (AYA) breast cancer patients by age, tumor stage, and receptor subtype to guide disclosure periods for insurance. Data of all females aged 18–39 years and diagnosed with invasive breast cancer between 2003 and 2021 (n = 13,075) were obtained from The Netherlands Cancer Registry (NCR). The five-year CRS was calculated annually up to 10 years post-diagnosis using a hybrid analysis approach. For the total AYA breast cancer study population the 5-year CRS exceeded 90 % from diagnosis and increased beyond 95 % 7 years post-diagnosis. Patients aged 18–24 reached 95 % 9 years post-diagnosis, those aged 25–29 after 5 years, and those aged 30–34 and 35–39 after 8 years. For stage I, the 5-year CRS reached 95 % from diagnosis, for stage II after 6 years, while the 5-year CRS for stages III and IV did not reach the 95 % threshold during the 10-year follow-up. Triple-negative tumors exceeded 95 % after 4 years, human epidermal growth factor receptor 2 (HER2) positive tumors after 6 years, while hormone receptor (HR) positive tumors did not reach 95 %. Excess mortality among AYA breast cancer patients tends to be little (CRS 90 %–95 %) from diagnosis and becomes minimal (CRS>95 %) over time compared to the general population. These results can enhance expectation management and inform policymakers, suggesting a shorter disclosure period.

The EuroQoL 5-Dimension 5-Level questionnaire (EQ-5D-5L) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) are commonly used Patient-Reported Outcome Measures (PROMs) for breast cancer. This study assesses and compares the internal responsiveness of the EQ-5D-5L and EORTC QLQ-C30 in Dutch breast cancer patients during the first year post-surgery. Women diagnosed with breast cancer who completed the EQ-5D-5L and EORTC QLQ-C30 pre-operatively (T0), 6 months (T6), and 12 months post-surgery (T12) were included. Mean differences of the EQ-5D-5L and EORTC QLQ-C30 between baseline and 6 months (delta 1) and between baseline and 12 months post-surgery (delta 2) were calculated and compared against the respective minimal clinically important differences (MCIDs) of 0.08 and 5. Internal responsiveness was assessed using effect sizes (ES) and standardized response means (SRM) for both deltas. In total, 333 breast cancer patients were included. Delta 1 and delta 2 for the EQ-5D-5L index and most scales of the EORTC QLQ-C30 were below the MCID. The internal responsiveness for both PROMs was small (ES and SRM < 0.5), with greater internal responsiveness for delta 1 compared to delta 2. The EQ-5D-5L index showed greater internal responsiveness than the EORTC QLQ-C30 Global Quality of Life scale and summary score. These findings are valuable for the interpretation of both PROMs in Dutch breast cancer research and clinical care.