Adolescents and young adults with predominantly low grade primary central nervous system tumors: patient reported socioeconomic outcomes and health-related quality of life ten years after diagnosis

Abstract

Context

Adolescents and young adults (AYAs) diagnosed with primary central nervous system tumors (PCNST) often face long-term socio-economic challenges and reduced health-related quality of life (HRQoL).

Objective

This study aims to evaluate the long-term socio-economic outcomes and HRQoL of AYAs more than ten years after diagnosis.

Methods

A national, retrospective study conducted between 2019 and 2022, including AYAs aged 15–25 diagnosed with PCNST in 2009–2010, identified through the French Brain Tumor Database. Socio-economic data and HRQoL were assessed using a structured questionnaire and the Short Form-12 (SF-12) Health Survey. Descriptive statistical analyses were performed.

Results

Questionnaires were available for 70 patients. Educational level improved over time, but 11.4% still lacked a diploma. While 90% were employed, 45% earned €1500–€2500 per month, and 36.7% earned less than €1500 per month. Workplace accommodations were rarely implemented despite needs. HRQoL assessments showed high physical functioning scores (mean: 85.61), but low vitality scores (mean: 35.82). The mean Physical Component Summary and the mean Mental Component Summary are lower to the general population aged 18–44 in France, respectively 50.6 (SD: 9.1) and 43.6 (SD:12.25) showing a poor physical and a very poor mental HRQoL for AYAs survivors.

Discussion

Despite resilience in education and employment, AYAs surviving PCNST face persistent socio-economic difficulties and poor mental HRQoL. Tailored interventions, including increased awareness of support resources and comprehensive care strategies, are needed to improve their long-term outcomes and facilitate better integration into society.

Clinical trial number

Not applicable.

Supplementary Information

The online version contains supplementary material available at 10.1007/s11060-026-05472-z.

Introduction

Primary central nervous system tumors (PCNST) found in adolescents and young adults (AYAs) are a distinct group of tumors that pose challenges for diagnosis, treatment, and monitoring [1]. Tumors that occur in this age group have specific biological, epidemiological, and therapeutic issues [2, 3]. In this age group, PCNST are among the most common cancers [4–6]. In USA, standardized incidence (US population) is 12/100,000 inhabitants/year for all cases with and without confirmed histology [5]. The French incidence standardized to the US population is 8.21/100,000 inhabitants/year for cases with confirmed histology [6]. Deaths due to malignant PCNST are the second most common cause of cancer death in the United States [5] and in Europe [7]. Secondly, AYAs survivors face significant long-term challenges that extend beyond the immediate impact of their disease. These challenges include socio-economic difficulties [8] reduced health-related quality of life (HRQoL) [9], and obstacles to achieving educational and professional goals [10].

While registries such as the Central Brain Tumor Registry of the United States (CBTRUS) ([4–5]), The Global Burden of Disease study [11], the FRANCIM Network [12] and the French Brain Tumor DataBase (FBTDB) [6] provide valuable data on incidence and survival, they often lack comprehensive insights into long-term socioeconomic (education, employment and income levels) and quality of life outcomes. Until recently, existing literature predominantly focused on survival rates and immediate quality of life post-treatment, leaving a critical gap in understanding the broader socio-economic trajectories of AYAs [13]. This gap complicates the development of targeted interventions and support systems for this vulnerable population.

There is no general consensus on how to define the AYA category, especially as regards the upper age limit. This has been variably set at 24, 25, 29 or 39 years. In France, the French National Cancer Institute (INCa) emphasizes the importance of tailored oncological care and socio-educational support for AYAs aged 15 to 25 years (up to 39 years old in USA) [14], recognizing the transitional challenges they face [15]. Despite this, most studies have not explored the long-term socio-economic implications for AYAs who survive PCNST, especially those with benign or slow-growing tumors who may not receive intensive cancer treatments but still experience significant life disruptions.

Thus, in this context, the aim of this article is to analyze the long-term socioeconomic outcomes and HRQoL reported by patients treated for a PCNST in AYA period (15–25 years old) in order to establish an overview of their post diagnosis and post-treatment life courses. We hypothesize that AYAs treated for PCNST during adolescence encounter socio-economic challenges in the long term, including disruptions to education, unstable employment and diminished career advancement opportunities. We did not formulate any hypothesis regarding HRQoL as this has already been extensively documented in the literature [9, 16] which highlights the detrimental impact of PCNST on AYAs’ HRQoL.

Materials and methods

Study design

A national, descriptive, retrospective, ten years post diagnosis, non-interventional study among AYA who were diagnosed with PCNST in France has been conducted over a three-year period between 2019 and 2022. The study included patients identified through the FBTDB, which provided a comprehensive database of PCNST cases across France. The methodology of the FBTDB has been extensively described [6, 17–21].

Endpoints

Socioeconomic future was approximated using the following indicators:

• Comparison of educational level at time of diagnosis and at time of survey.

• Grade retention (defined as the practice of requiring a student to repeat the same grade for an additional academic year) following diagnosis.

• Income level.

Within the socio-economic future, the professional future was more particularly approximated by:

• Work status (unemployed or not, disabled with or without disability recognition, sick leave, student).

• Profession.

• Employment status (employee, self-employed, business owner, helping a family member without salaried employment).

• Job stability (change of job since the disease, change of regular job).

• Type of employment contract (civil servant, permanent, fixed-term, seasonal, temporary, apprenticeship).

• Workplace adjustments.

• Knowledge of tools for maintaining and returning to work.

HRQoL was assessed by the quality-of-life score (SF12).

Eligibility criteria

Inclusion period

Eligible participants were aged between 15 and 25 years at the time of their first histological diagnosis of a PCNST, which occurred within the two-year period from January 1, 2009, to December 31, 2010 (research grant n° PREAC 2017. LCC/TR French National League Against Cancer, 2017).

Inclusion criteria

• Patients who survived for at least eight years post-diagnosis, ensuring the assessment of long-term outcomes.

• Capable of completing a follow-up questionnaire in French, either independently or with assistance to provide reliable self-reported data.

• Informed and not having exercised their right to object.

Exclusion criteria

• Patients lacking histological confirmation of their diagnosis.

• Patients under guardianship or trusteeship.

Recruitment

Participant centers

Patients were recruited from 46 neurosurgery centers across France among which 37 centers participated, each with a lead neurosurgeon responsible for patient management during the study period. In each center, a designated individual—such as a clinical research associate (CRA), assistant, nurse, resident, or physician—was responsible for collecting clinical data and coordinating patient participation.

Recruitment process

The recruitment process involved identifying and contacting patients who met the inclusion criteria. Patients were initially approached via telephone, where the study objectives were introduced in detail, and any questions were addressed.

Informed consent was obtained from all participants in compliance with ethical guidelines and regulations (CCTIRS number: 10.548; CNIL number: 911013).

Data collection

Data collection involved a multi-step process that combined main clinical data extraction from medical records with self-reported data obtained through a structured questionnaire.

Three clinical criteria were particularly relevant to understanding patient’s outcomes:

• The type of first surgery at the first visit, histological type, with a grouping of benign and slowly evolving tumors, representing most cases and treatment with radiotherapy and/or chemotherapy (supplementary file, Table 5 - Main clinical characteristics of the 70 patients).

Socioeconomic data have been obtained through a questionnaire literature based and developed specifically for this study by a multidisciplinary team composed of clinicians and social scientists who developed previous works in the field [22]. Designed to be comprehensive, the questionnaire included predominantly closed-ended questions to facilitate completion and analysis while minimizing respondent burden.

Socio-economic variables focused on several key areas. Educational level was evaluated by comparing education levels at diagnosis and at the time of the survey, as well as documenting any instances of grade retention following diagnosis. Employment status was categorized as employed, unemployed, on disability (with or without recognition by the French Disabled Persons Departmental Home [MDPH]), on sick leave, or student. Additional professional details were collected, including the participant’s current profession, type of employment contract (permanent, temporary, apprenticeship), job stability indicated by the number of job changes since illness, and any workplace accommodations made to support their health needs. Income levels were self-reported within predefined brackets to assess financial stability.

HRQoL was assessed using the Short Form-12 (SF-12) Health questionnaire [23–25]. The SF-12 was chosen for its brevity and reliability, making it suitable for participants who might have limited time or cognitive resources, and it has been widely used in studies assessing HRQoL in various populations. The SF-12 is a validated instrument that evaluates eight health dimensions: physical functioning, role limitations due to physical health problems, bodily pain, general health perceptions, vitality (energy/fatigue), social functioning, role limitations due to emotional problems, and mental health (psychological distress and psychological well-being). For each dimension, both raw scores (ranging from 0 to 100) and standardized T-scores (based on U.S. population norms, with a mean of 50 and SD of 10) were presented. In addition, the SF-12 generates two composite summary scores: the Physical Component Summary (PCS) and the Mental Component Summary (MCS), providing overall measures of physical and mental health status, respectively. Higher scores represent better physical and mental well-being. PCS and MCS scores were compared to reference values from the French general population aged 18 to 44 years, with a mean of 48.4 (± 9.5) for MCS and a mean of 52.9 (± 6.0) for PCS [23]. Scores equal to or above these thresholds indicate better HRQoL compared to the general population, while scores below suggest poorer HRQoL.

Data collection was coordinated by Clinical Research Associates (CRAs) at Montpellier University Hospital and other participating centers to ensure consistency across sites. To maximize participation rates and minimize loss to follow-up, patients were initially contacted by telephone to introduce the study and invite their participation. For those who consented, the questionnaire was sent via email or postal mail, depending on the patient’s preference, to accommodate individual accessibility needs. Between two and four reminders were conducted via telephone or SMS over a period of three months to ensure robust response rates. These reminders served to prompt participants who may have forgotten or delayed completing the questionnaire. Efforts were made to locate patients who had been lost to follow-up through updated contact information and outreach via general practitioners, ensuring that as many eligible participants as possible were included in the study.

Data management, confidentiality, dissemination

All information required has been recorded in an electronic case report form (eCRF). This eCRF was developed by a data manager from the Léon Berard Cancer Center and Medsharing society.

The data were computerized in a coded way, in accordance with the law for data protection and freedom of information (Article L.1121-3 of the French Public Health Code). The study patients were identified by a unique study inclusion number and by the first initial of their surname and of their given name.

Data were entered, as soon as they were collected, by the authorized persons (investigator and clinical research assistants).

Access to the data was restricted to only the persons participating in the study. The investigators and clinical research assistants of an investigating center had only access to the data for their patients and entered the data directly into the eCRF using a secured website. The investigator was responsible for the reliability of the data entered and completed the data as it was obtained during the patient’s follow-up. Throughout the length of the study, the data were stored in an ISO 27,001-certified data center and backed up daily.

Statistical analysis

Descriptive statistical analyses were conducted using SAS software (version 9.4; SAS Institute Inc., Cary, NC, US).

Qualitative variables, such as employment status and educational level, were expressed as frequencies and percentages to provide a clear understanding of the distribution of these characteristics within the study population. Quantitative variables, including SF-12 scores and age at diagnosis, were described using means and standard deviations, or medians and interquartile ranges.

Results

Study population

The initial target population identified by the FBTDB comprised 942 patients diagnosed 10 years post diagnosis (median 11.7 years; IQR: 10.9–12.3) with primary central nervous system tumors in 2009 and 2010. 150 medical records from non-participating centers (n = 9) were unavailable. Thus, after reviewing 792 medical records and applying exclusion criteria—including non-incident cases (n = 41), unmet inclusion criteria (n = 28), and unusable records (n = 46), 677 patients were deemed eligible. Of these, 157 were deceased at the time of follow-up, leaving resulting in 520 potential participants. Challenges such as inability to contact 196 patients, refusals from 20 patients or their families, and incomplete responses from 60 participants reduced the sample size. Additionally, 22 patients were excluded due to neurosurgeons withholding contact information, and 152 did not respond for different other reasons (did not respond to telephone calls and postal letters, did not respond after a period of reflection, could not be contacted directly, no longer wants to hear about the disease). Ultimately, 70 adolescents and young adults completed the questionnaire and were included in the analysis (see Fig. 1: Flowchart).

Fig. 1.

Flowchart of the study

The majority of patients had benign or slowly progressive tumors and were not treated with heavy medical oncology therapy. Most patients did not receive radiotherapy (49/70), and 4 patients had chemotherapy. These clinical elements are important for understanding the socio-economic results presented below, as well as their limitations (supplementary file, Table 5 - Main clinical characteristics of the 70 patients).

There was an equal gender distribution (50.0% male and female). The median age at diagnosis across the AYA age was 19.5 years (IQR:7). The majority of participants (65.7%) were aged 20–25 years. Education levels varied: 39.1% had a first-cycle university diploma, 24.6% had completed a general or technological baccalaureate (BAC) and 28.9% had no diploma or a vocational qualification (CAP/BEP). Notably, 40% reported grade retention before diagnosis, indicating academic challenges, which decreased to 13.2% post-diagnosis. At the time of the survey, 57.1% were in a relationship, and 41.1% had children (Table 1).

Table 1.

Sociodemographic description of the population (N = 70)

Characteristics	N (%)
Median age at diagnosis (Q1-Q3)	19.5 (16.5–23.5)
Male	35 (50.0%)
Educational level at diagnosis
No diploma	5 (7.2%)
Junior high diploma (DNB*)	5 (7.2%)
Short vocational program (CAP**, BEP***)	10 (14.5%)
General or technological (BAC****)	17 (24.6%)
University diploma (1st cycle)	27 (39.1%)
University diploma (2nd or 3rd cycle)	5 (7.2%)
Missing data	1
Grade retention at diagnosis
Yes	26 (40.0%)
No	39 (60.0%)
Missing data	5
If yes, number of repetitions (n = 26)
Once	19 (76.0%)
Twice	4 (16.0%)
Three times	2 (8.0%)
Missing data	1
Marital status
In a relationship	40 (57.1%)
Single	30 (42.9%)
Do you have children?
Yes	29 (41.1%)
No	41 (58.6%)
If Yes, number of dependent children (n = 29)
1	14 (48.3%)
2	14 (48.3%)
3	1 (3.4%)
Current educational level
No diploma	2 (3.8%)
Junior high diploma (DNB)	2 (3.8%)
Short vocational program (CAP, BEP)	2 (3.8%)
General or technological (BAC)	13 (24.5%)
University diploma (1st cycle)	26 (49.1%)
University diploma (2nd or 3rd cycle)	8 (15.1%)
Missing data	17
Grade retention after diagnosis
Yes	9 (13.2%)
No	59 (86.8%)
Missing data	2
If yes, number of repetitions (n = 9)
Once	6
Twice or more	3

Legend: DNB*-National Diploma (Diplôme National du Brevet); CAP**-Certificate of Professional Competence (Certificat d’Aptitude Professionnelle); BEP***- Certificate of Professional Studies (Brevet d’Études Professionnelles); French Baccalauréat**** (equivalent to high school diploma with specialization)

Socioeconomic outcomes

At diagnosis, 46.3% had a university diploma (first cycle), increasing to 49.1% at the survey time, plus 15.1% attaining a second- or third-cycle diploma. However, 11.4% still lacked a diploma or held a short vocational program (CAP/BEP qualification).

Income levels were modest: 45.0% earned €1,500–€2,500 monthly, 38.4% earned less than €1,500, and only 13.3% earned €2,500–€5,000. A small proportion (3.3%) reported incomes exceeding €5,000 (Table 2).

Table 2.

Income levels

Income at the time of the survey	N (%)
Less than 500€	1 (1.7%)
500€ to 1,499€	22 (36.7%)
1,500€ to 2,499€	27 (45.0%)
2,500 to 5,000€	8 (13.3%)
More than 5,000€	2 (3.3%)
Missing data	10

Legend: 1€=1,15$ (November 2025)

At the survey time, 90% of participants were employed. Among non-working individuals, 71.4% had recognized disability status. Employment types were diverse: 31.1% were employees, 27.9% held intermediate professions, and 24.6% were executives or intellectual professionals. Employment was predominantly full-time (75.8%), with 56.6% holding permanent contracts and 20.8% being public servants. Common sectors included tertiary services (38.3%) and education, health, and social work (35.0%).

Despite potential needs, workplace adjustments were rarely implemented. Among employed participants, 71.9% did not request changes, and only 1.8% successfully obtained adjustments. Limited awareness and unaddressed needs were significant barriers to workplace integration (Table 3).

Table 3.

Employment information and adjustments (N = 70)

Characteristics	N (%)
Currently working
Yes	63 (90.0%)
No	7 (10.0%)
If not, specify (n = 7):
Student	2
Unemployed	4
On sick leave	0
On disability with recognition of disability status (MDPH* file)	5
Current employment information (for workers, n = 63):
Profession
Farmers	1 (1.6%)
Artisans, shopkeepers, business owners	5 (8.2%)
Executives and intellectuals	15 (24.6%)
Intermediate profession	17 (27.9%)
Employees	19 (31.1%)
Manual workers	4 (6.6%)
Missing data	2
Employment status
Private sector employee	35 (55.4%)
Public sector employee	19 (31.1%)
Self-employed	4 (6.6%)
Household employee	2 (3.3%)
Assisting a family member (unpaid)	1 (1.6%)
Missing data	2
Type of contract (if salaried, n = 56)
Permanent contract (CDI**)	30 (56.6%)
Public servant	11 (20.8%)
Fixed-term contract (CDD***)	9 (17.0%)
Seasonal contract	2 (3.8%)
Apprenticeship contract	1 (1.9%)
Missing data	3
Sector of activity
Tertiary services	23 (38.3%)
Education, health, social work	21 (35.0%)
Trade and repairs	7 (11.7%)
Various industries	4 (6.7%)
Construction	3 (5.0%)
Agriculture, forestry, fishing	1 (1.7%)
Energy industries	1 (1.7%)
Missing data	3
Working time:
Full-time	47 (75.8%)
Part-time	7 (11.3%)
Half-time	5 (8.1%)
Other	2 (3.2%)
Student job	1 (1.6%)
Missing data	1
Type of working time
By choice	39 (75.0%)
For economical reason	10 (19.2%)
For medical reason	3 (5.8%)
Missing data	11
Real working time
35 h or more	49 (83.1%)
Less than 35 h	10 (16.9%)
Missing data	10
Change of work since disease diagnosed
Yes	26 (44.1%)
No	33 (55.9%)
Missing data	4

Legend: MDPH*: Disability Support Application (Dossier MDPH – Maison Départementale des Personnes Handicapées); CDI**: Permanent Contract (Contrat à Durée Indéterminée)

CDD***: Fixed-term Contract (Contrat à Durée Déterminée)

Health-related quality of life

HRQoL assessed using the SF-12 Health questionnaire showed mixed outcomes. Physical functioning (mean score: 85.61), role physical (81.72), and bodily pain (79.48) scores were relatively high, indicating good daily functionality. However, the scores for general health perception (60.97) and especially vitality (35.82) were lower, reflecting very low energy and a perception of a weakened general health. Mental health score (61.94) was also lower as compared to physical scores underlying mental health difficulties (Table 4).

Table 4.

SF-12 HRQoL scores (n = 70)

Quality of life domain	Raw score, mean (SD)	Standardized T-score, mean (SD)
Physical Health Components
Physical Functioning (PF)	85.61 (25.5)	51.52 (8.7)
Role Physical (RP)	81.72 (22.1)	50.44 (8.1)
Bodily Pain (BP)	79.48 (28.1)	49.08 (11.4)
General Health (GH)	60.97 (24.5)	45.16 (10.5)
Physical component summary (PCS-12)	-	50.67 (9.17)
Mental Health Components
Vitality (VT)	35.82 (27.2)	42.04 (10.9)
Social Functioning (SF)	77.24 (29.4)	47.37 (11.8)
Role Emotional (RE)	78.92 (26)	46.65 (11.6)
Mental Health (MH)	61.94 (20.9)	45.98 (10.2)
Mental component summary (MCS-12)	-	43.60 (12.25)

Legend. Standardized T-scores (mean = 50, SD = 10) were calculated using U.S. general population norms. This allows for international comparisons by situating individual scores relative to a common reference population. Missing data: 4 for Physical Functioning, 3 for each other SF-12 dimension

In general, both PCS and MCS scores, respectively 50.6 (SD: 9.1) and 43.6 (SD:12.25), were lower to the French general population aged 18–44 [22], showing a poor physical and a very poor mental HRQoL for AYAs survivors (Table 4).

Discussion

The primary objective of this study was to evaluate the long-term socioeconomic outcomes and HRQoL reported by AYAs who survived primary central nervous system tumors. Diagnosed at a pivotal moment in their personal and professional development, these individuals faced significant challenges due to the consequences of their disease and treatments.

Socioeconomic outcomes

Our findings show that a PCNST diagnosis during adolescence or early adulthood has large impacts on educational and professional trajectories. Many participants were in the midst of academic pursuits when confronted with the disease. At diagnosis, educational level varied, with a notable proportion lacking formal qualifications, reflecting educational disruptions caused by the illness. Nevertheless, educational levels improved over time, with 64% of participants having a university degree, which is higher than the national average for young adults (25–34 year-olds) in France in 2022 (54% for women and 46% for men, respectively) [26]. The high rate of grade retention before diagnosis (40.0%) decreased to 13.2% after diagnosis, which may reflect both school accommodations and AYAs’ determination to overcome academic requirements. This demonstrates the resilience of PCNST cancer survivors and their ability to pursue their education despite significant obstacles [27].

However, income levels remained modest, with 45.0% earning between €1,500 and €2,500 per month, which is comparable to the median monthly standard of living for young adults in France in 2022 (€1,969 for 18 to 29 year-olds) [28], but 38.4% were below, earning less than €1,500 per month.

These findings are congruent with some previous studies indicating that PCNST cancer survivors experience economic challenges due to not gainful occupation [29], career interruptions and illness-related limitations [30, 31].

The employment rate, at 90.0%, is particularly high, which is not unexpected given the positive tumor profile of respondents, and demonstrates good professional integration. This employment rate is not only higher than the employment rates of AYAs cancer patients survivors in Europe [8, 10], of CNS tumor survivors who are nearly five times more likely to be unemployed than healthy controls [32], but also higher than the national average employment rates for 15–24 and 18–29 year-olds in France in 2022, respectively 34,9% and 55% [33].

This high employment rate must nevertheless be qualified in light of the nature of positions held. While the diversity of employment categories mirrors the heterogeneity of educational backgrounds and adaptive career trajectories, the high proportion of intermediate occupations (27.9%) and employees (31.1%) highlights the limited opportunities for survivors to obtain managerial or professional employment and high incomes [34]. Furthermore, while stability is relatively high, with many respondents having permanent contracts or civil service positions, 44.1% have changed jobs since their illness, likely due to physical or neurocognitive limitations requiring adjustments in their profession. It should be noted that workplace accommodations were rarely implemented despite reported needs. A significant proportion of participants were unaware of the accommodations available or chose not to request them. This highlights a significant gap in support and underscores the need for increased awareness and better access to workplace accommodations to improve job retention and job satisfaction. Even tools and policy initiatives are developed in this direction in France, notably those supported by the French National Cancer Institute and the National League Against Cancer [35, 36], including videos, podcasts, charters and workshops aimed at both employers, cancer patients and survivors, with the objective of promoting and supporting job re-integration, they are nonetheless not AYA-specific.

Health-related quality of life

The fact that survivors have low HRQoL scores is again supported by our findings. The SF-12 questionnaire results showed variability across HRQoL dimensions with a mean PCS score inferior to that of the French general population aged 18 to 44 years old (50.6 vs. 52.9) and a mean MCS score very much lower (43.6 vs. 48.4). If physical functioning scores were relatively high, indicating a good capacity for daily activities, nevertheless general health perception was lower, and above all vitality was very weakened.

The poor mental HRQoL underlines ongoing psychological challenges, consistent with the literature showing higher rates of anxiety, depression, and post-traumatic stress among PCNST survivors [9, 37–39].

These outcomes emphasize the enduring impact of PCNST on survivors HRQoL. Chronic fatigue, cognitive difficulties, and social interaction challenges remain prominent issues [40, 41]. The complex interactions between physical health, psychological well-being, and socioeconomic factors necessitates comprehensive support strategies.

Study limitations

This study has several limitations that must be taken into account when interpreting the outcomes. Firstly, the small sample size (70 participants) precluded subgroup analyses (by tumor type, by type of treatment, by socioeconomic characteristics) and limits the generalizability of the outcomes even if the median age at diagnosis of the final sample is not significantly different from the age of the eligible population (19.5 years versus 20 years, respectively), nor is the gender distribution (parity versus 45% women and 55% men). Nevertheless, our sample is not representative of the histological distribution of all eligible survivors, their clinical profiles are different, introducing a selection bias. The final sample logically includes more patients with a favorable prognosis, few of them indeed had non-benign or fast-growing tumors that require intensive treatments with deleterious side effects on daily life. Thus, participants who completed the questionnaires may have higher levels of socio-economic integration, which may bias the results in favor of more favorable outcomes that are moreover only descriptive.

Secondly, the heterogeneity of practices across the 37 participating centers, with an average of only two patients per center, could have contributed to disparities in follow-up protocols and care approaches. This variability underscores the need for harmonized care practices at the national level to ensure consistency and reduce inequalities in survivors’ HRQoL. Furthermore, self-reported data may be subject to reporting biases, including social desirability bias, especially on sensitive topics such as income, education, or personal health impacts. Non-responses to certain questions further complicate the interpretation of results and may reflect discomfort in addressing these subjects or lack of awareness about available resources.

Finally, reliance on the SF-12 as the sole measure of QOL may not fully capture the nuanced experiences of survivors. Future research should use more specific and comprehensive tools and methods, such as Patient-Reported Experience Measures (PREMs) [42] or individual semi-structured interviews, to better understand survivors’ lived experiences.

Perspectives

Results underline the need for tailored interventions to support AYAs in their educational, professional, and health trajectories. Efforts should focus on increasing awareness of workplace accommodations, developing inclusive policies, and providing targeted psychological and financial support. Implementing educational support programs and vocational rehabilitation services could enhance career development and economic stability for survivors. Such initiatives are crucial to improve HRQoL and resilience among AYAs, ensuring they are better equipped to navigate the challenges of life post-diagnosis.

Future research should prioritize larger, more representative samples, developing longitudinal designs to capture the evolving challenges faced by survivors of PCNST. Interdisciplinary collaboration, integrating expertise from oncology, neurology, clinical psychology, and social sciences, would provide deeper insights into the complex needs of this population and inform tailored support strategies.

Conclusion

This study analyzed the long-term socioeconomic outcomes and HRQoL reported by adolescents and young adults who survived primary central nervous system tumors more than ten years after initial treatment. Despite significant heterogeneity in life trajectories, many survivors demonstrated remarkable coping and resilience, attaining high education levels, engaging in intermediate or high-level professions, and establishing personal relationships. However, PCNST AYAs faced persistent challenges, particularly in education, employment, workplace adjustments and mental health which adversely affected their everyday life and HRQoL.

These findings underline the complexity of survivors’ experiences, where physical and cognitive sequelae coexist with efforts to reintegrate into society. They highlight the need for personalized clinical, educational, professional, and social support systems tailored to the specific needs of each survivor. Moreover, harmonization of care practices across centers is essential to ensure equitable access to care and consistent support.

Future research should expand to larger, more diverse samples and consider longitudinal studies to better understand and address the evolving challenges faced by AYAs with primary central nervous system tumors’ survivors. Developing tailored interventions and policies will be essential to support them in their long-term recovery and integration into society.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Author contributions

Conception and design: TR, LB, NM. Data collection: SZ, MK, GS, AS, HC, SA, AAA, AL, AH, JB, AD, VR, BT, LB. Methodology: MM, SZ, LB, NM, Data analysis: TM, MM, SZ, LB, NM. Data interpretation: TM, MM, LB, NM. Writing- original draft: TM. Validation, writing- review and editing: TM, MM, TR, LB, NM. Manuscript review and Final approval of manuscript: all authors.

Funding

This study was funded by the French National League Against Cancer (Ligue Nationale Contre le Cancer), funding number: N°PREAC2017.LCC/TR.

Data availability

Anonymized original data from this manuscript will be made available upon reasonable request to the corresponding author.

Declarations

Human ethics and consent to participate

This study was performed in line with the principles of the Declaration of Helsinki and was approved by the French legislation (CCTIRS n°10.548; CNIL n°911013) and the board of Club de Neuro-Oncology of the Société Française de Neurochirurgie.

Competing interests

The authors declare no competing interests.