Long-term impact of sporadic desmoid fibromatosis on work life, reproductive health and support needs. Results from the PROSa-DES study.

Long-term impact of sporadic desmoid fibromatosis on work life, reproductive health and support needs. 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Results from the PROSa-DES study. Sergio Armando Zapata Bonilla, Rebekka Hoffmann, Markus K. Schuler, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7947255/v1 This work is licensed under a CC BY 4.0 License Status: Under Revision Version 1 posted 5 You are reading this latest preprint version Abstract Introduction: Desmoid Tumors (aggressive Fibromatosis; DT) are rare soft tissue tumors that typically affect young adults, predominantly women and can lead to significant long-term morbidity. While its physical burden is well characterized, less is known about its long-term psychosocial and functional impact. This study aims to explore how DT affects employment, career development, family planning, and support needs from a patient-centered perspective. Methods: We analyzed data from 109 participants suffering from DT who were recruited via a tertiary cancer center and a national patient advocacy group. The cohort has a median disease history of ten years, enabling long-term perspectives. Quantitative data on employment, fertility planning, and unmet needs were collected via structured questionnaires. Qualitative input from patient commentaries complemented these findings. Results: The mean age at survey was 45.7 years (SD 14.1); mean age at diagnosis was 35.8 years (SD 14.5). Nearly half of participants had an officially recognized disability status, and around 10% had exited the workforce, a substantially higher rate than in the general population. Among those employed full-time at diagnosis (n = 49), 51.0% changed their career path, most commonly due to physical (89.9%, n = 44) and psychological limitations (56.2%, n = 27). Financial losses due to changes in career plans were reported by 52.2% (n = 24). Of participants with incomplete family planning (n = 59), 79.7% expressed at least moderate desire for children, yet only 17.0% (n = 10) received counseling from reproductive medicine specialists. Satisfaction with counseling, when received, was high. Unmet support needs were most frequent for fear of progression (31.5%, n = 34) and uncertainty about the future (35.8%, n = 39). Emotional support needs declined over time (p = 0.050), suggesting some long-term adjustment. Conclusion: This study provides long-term, patient-reported insights into the impact of DT on employment, family planning, and psychosocial well-being. The findings highlight persistent functional and socioeconomic consequences, alongside enduring emotional burdens such as fear of progression. These results underscore the importance of structured survivorship approaches that integrate return-to-work planning, fertility counseling, and sustained psychosocial support, extending care beyond tumor control to long-term quality of life. desmoid fibromatosis employment fertility unmet needs patient-reported outcomes rare tumors quality of life psychosocial impact long-term follow-up Figures Figure 1 Introduction Desmoid tumors (DT, aggressive fibromatosis) represent a proliferative, non-metastasizing disease classified by ICD-10-WHO code D48.1. It is defined as clonal fibroblastic proliferation that arises in the soft tissues and fascia and is characterized by an infiltrative growth to all surrounding structures. DTs can develop in every part of the body ( 1 , 2 ). The etiology of DTs is multifactorial with 85–90% of DTs are sporadically and another 10–25% develop in patients affected by familiar adenomatous polyposis (FAP) ( 3 , 4 ). In the sporadic cases a point mutation in the CTNNB1 gene is pathognomonic whereas in the hereditary cases a mutation in the APC gene can be found ( 5 , 6 ). Up to 30% of the patients develop a desmoid with anteceding trauma ( 7 , 8 ). The clinical course is highly variable, with some tumors showing spontaneous regression ( 9 ) and others requiring repeated intervention ( 10 ). One of the defining characteristics of DT is its predominance in young females, who account for about two thirds of the cases. The median age of diagnosis is around 35 years ( 11 , 12 ), however, there is also a considerable proportion of children affected ( 13 , 14 ). The age distribution introduces a distinct set of challenges, as many patients are in the midst of establishing careers, starting families, and planning their future. The disease, and its treatment, can interfere with critical life milestones in ways not typically seen in older cancer populations. Historically, treatment options have preferred surgery and radiotherapy to systemic therapies such as systemic chemotherapy ( 15 – 17 ). More recently, tyrosine kinase inhibitors like imatinib, sorafenib, pazopanib or nirogacestat were introduced to therapy. The latter has received FDA approval and EMA recommended the granting of a marketing authorization on June 25, 2025 ( 18 – 21 ). All drugs demonstrated tumor control and improvement in patient-reported outcomes in prospective or randomized trials ( 22 ). Nonetheless, even with less invasive management strategies like active surveillance ( 22 , 23 ), the chronic and unpredictable nature of the disease often leads to functional limitations, emotional distress, and disruptions in life planning ( 24 , 25 ). Patients with sporadic desmoids generally have no increased mortality compared to the general population, whereas patients with FAP-associated desmoids have life-threatening complications mainly through intestinal obstruction ( 26 , 27 ). However, all desmoid patients may suffer from significant morbidity including side effects of drugs or late effects of radiation therapy ( 28 – 31 ). Despite increased interest in health-related quality of life (HRQoL) among oncology populations, research on DT has been slow to develop. Recent studies have begun to document the physical and psychological burden of DT using both generic and disease-specific instruments such as the DTF-QoL ( 12 , 29 , 32 – 34 ). Outcomes like return to work (RTW), career trajectory, and reproductive decision-making have not yet been addressed, despite their high relevance in a young cohort. Studies in soft tissue sarcoma populations have begun to fill the gaps. The PROSa study was a nationwide prospective cohort examining health-related quality of life and survivorship outcomes in sarcoma patients ( 35 , 36 ). Within this framework, our study group has previously reported on return-to-work limitations and quality-of-life impairments in sarcoma patients, including analyses of employment status, work ability, and associated sociodemographic factors ( 37 , 38 ). As only a few patients with DT were included in the PROSa study ( 35 ) and were not analyzed separately, thus, impactful data are lacking. The PROSa-DES study aims to address the gap by evaluating how desmoid fibromatosis affects physical functioning, employment, return to normal work after treatment, family planning, and unmet psychosocial needs. As the typically affected young adults are navigating critical life phases, this research highlights areas of support that may be overlooked in conventional oncologic care. We set to analyze the following research questions: What is the impact of a diagnosis of DT on patients’ working lives, including employment status and career development? How does DT influence family planning, particularly patients' desire to have children and their reproductive decisions? What unmet needs or support gaps exist in this patient population, particularly in psychosocial and practical domains? Methods We conducted the cross-sectional, questionnaire-based observational study Burden of Disease and Living Situation in Desmoid Patients (PROSa-DES) between November 2023 and June 2024, enrolling adult patients with histologically confirmed DTs. Participants were recruited through two pathways. First, patients were identified from the long-term follow-up cohort at University Hospital Mannheim, where those with a disease history of at least three years and regular outpatient visits were approached. Second, additional patients were recruited via convenience sampling, using calls for participation disseminated through the SOS Desmoid patient group (sos-desmoid.de) and the German Sarcoma Foundation (sarkome.de). Interested patients contacted the study center at University Hospital Dresden via email or were invited by letter if they had previously been treated at Mannheim. Questionnaires were distributed and returned by mail. Clinical data were extracted from medical records at University Hospital Mannheim for patients recruited through the center. For patients enrolled via convenience sampling, relevant clinical information was gathered from recent physician letters submitted by the participants or retrieved directly from current practitioners with patient consent. Eligible participants were adults (≥ 18 years) with histologically confirmed DTs and sufficient cognitive and linguistic capacity to complete the questionnaires. Patients with FAP-associated DTs were excluded due to distinct clinical features, including different tumor locations, treatment approaches, and associated risks for malignancies. All participants provided informed consent prior to enrollment. The study received ethical approval from the Technical University of Dresden (EK489112023) and was registered at ClinicalTrials.gov (NCT06258421). The questionnaire package included standardized patient-reported outcome (PRO) measures and collected sociodemographic and clinical data. For the present analysis, particular focus was placed on indicators such as employment and fertility history. To assess unmet needs we used a shortened version of the Supportive Care Needs Survey (SCNS), a validated tool designed to assess unmet needs in psychological, physical, informational, and practical domains ( 39 , 40 ). To analyze the reintegration to normal living, we used the Reintegration to Normal Living (RNL), a questionnaire designed to assess the consequences of disease and its treatment on a patient's daily life ( 41 ). Clinical parameters, including treatment timelines, disease history, and current status, were also captured. Where applicable, internal consistency checks were performed by cross-validating clinical data with patient-reported responses. Statistical analysis Continuous variables were presented with mean and standard deviation (SD). Categorical variables were reported with absolute and relative frequencies. Variable values with less than 4 values were compiled in the variable “other”. To analyze group differences in supportive care needs, we used the Chi-square (χ²) test. Statistical analyses were exploratory and performed using SPSS V.26 (IBM Corporation, Armonk, New York, USA). Results 1. Demographics and Baseline Employment Of 165 contacted patients, 109 with desmoid tumors (DT) were included in the final analysis. The cohort was predominantly female (69.7%), with a mean age of 45.7 years and a mean age at diagnosis of 35.8 years. Two-thirds (67.0%) had a secondary school leaving certificate, and the mean net household income was €2,542. Most participants were white-collar workers (72.5%) and lived in a partnership (79.8%); 59.6% reported having children. At the time of diagnosis, 54.1% had not yet completed family planning. Their demographic and socioeconomic characteristics are summarized in Table 1 . Table 1 Demographic Characteristics and Socioeconomic factors Variable Value n % All 109 100 Gender Female 76 69.7 Male 31 28.4 Diverse 2 1.8 Age 18–35 29 26.6 36–45 28 25.7 46–55 29 26.6 > 55 22 20.2 Missing 1 0.9 Mean/ SD 45.72 14.1 Age at Diagnosis Mean/ SD 35.8 14.5 Time since diagnosis 0-<5 years 29 26.6 5- 10 years 49 45.0 Mean/SD 9.5 6.1 Disease Status Complete Remission 31 28.4 Partial Remission & Stable Disease 60 55 Progress 12 11 Unknown/not accessable 6 5.5 Education/ Income/ Occupation School Education Up to intermediate school leaving certificate 36 33 Secondary school leaving certificate 73 67 Net household income 1750 € 23 21.1 1750 € − 2458 € 27 24.8 2458 € − 3490 € 25 22.9 > 3491 € 25 22.9 Mean/ SD 2,542 1,233 Occupation Blue collar 7 6,4 Civil 13 11.9 White collar 79 72.5 Self-employed 7 6,4 Other, unknown 3 2.7 Partnership and Children Partnership No 22 20.2 Yes 87 79.8 Children below 14 No 71 65.1 Yes 38 34.9 Children overall No 44 40.4 1 21 19.3 2 36 33 > 2 8 7.3 Completed family planning at diagnosis Yes 50 45.9 No 59 54.1 SD = standard deviation; € = Euro. Regarding disease status, 28.4% reported complete remission, 55.0% partial response or stable disease, and 11.0% progression, while for 5.5%, disease status was unknown or not accessible. - Table 1 goes here – 2. Employment Situation and Impact on Professional Development Employment and disability status at diagnosis and at the time of survey illustrated changes in participants’ occupational situation (Fig. 1). Among the 49 participants employed full-time at diagnosis, 51.0% remained in full-time roles at follow-up, 20.4% shifted to part-time work, 12.2% entered old-age retirement, 10.2% transitioned to disability pension, and 6.1% moved into other categories. Of the 30 participants in part-time employment, 66.7% remained part-time, 13.3% moved to full-time employment, 16.7% transitioned to disability pension, and 3.3% became unemployed. Participants who were students at diagnosis (n = 18) predominantly entered the workforce. The proportion receiving disability pensions increased from 0.9% at diagnosis to 10.1% at follow-up, while the proportion of retirees rose from 3.7% to 11.0%. Overall, a shift towards part-time employment was observed across baseline categories. Figure 1. Transitions in employment status from time of diagnosis to date of survey. Employment trajectories of participants from diagnosis to the time of survey are shown, illustrating retention in full-time or part-time work, transitions to retirement or disability pension, and movement between categories. Detailed numerical values are provided in Supplementary Table S1 . - Career trajectory changes were further examined across baseline employment groups (Table 2 ). Overall, 46.6% reported having to change their intended career trajectory. The continuation of career plans was highest among part-time workers (63.3%), compared to 49.0% of full-time employees and 44.4% of students or trainees. Table 2 Changes in the career path Employment Status at Diagnosis Yes, continued career No, did not continue career Total Full-Time 24 (49.0%) 25 (51.0%) 49 Part-Time 19 (63.3%) 11 (36.7%) 30 Student, Trainee (University, School) 8 (44.4%) 10 (55.6%) 18 Other / Non Workforce † 4 (66.7%) 2 (33.3%) 6 Total 55 (53.4%) 48 (46.6%) 103 ‡ † Includes Disability Pension, Homemaker, and Other categories. ‡ Missing data (n = 6) Table 2 goes here - Among those who altered their career trajectory, 89.9% cited reduced physical resilience, 56.2% psychological resilience, and 31.3% compatibility with ongoing therapy as reasons. Consequences included financial losses (52.2%), reduced working hours (45.7%), job changes (39.1%), and other restrictions such as reduced capacity, difficulties in securing disability benefits, or loss of leadership positions (34.8%). A few participants reported early retirement or changes in academic or professional plans (Supplementary Table S2). 3. Impact on Family Planning and Fertility issues As outlined above, a majority had not completed family planning at the time of diagnosis (Table 1 ). Prior to diagnosis, 52.6% reported a strong desire to have children, most frequently among women (58.5%). After diagnosis, 59.6% expressed a strong need to discuss fertility concerns, again most commonly among women (65.9%) (Supplementary Table S3). The majority reported having discussed fertility concerns with a physician, but only a minority consulted a reproductive medicine specialist. Satisfaction with counseling was high (Table 3 ). Table 3 Type of fertility counseling received and satisfaction with the counseling Type of counseling Metric n (%) Physician (n = 58) Yes 46 (79.3) No 12 (21.7) Satisfaction (n = 46) Not or barely satisfied 8 (17.4) Somewhat satisfied 10 (21.7) Strongly or absolutely satisfied 28 (60.9) Talked to a reproductive medicine specialist (n = 10) Yes 10 (17.2) No 48 (82.8) Satisfaction (n = 46) Not or barely satisfied 1 ( 10 ) Somewhat satisfied 2 ( 20 ) Strongly or absolutely satisfied 7 (70) Note: Percentages refer to proportion of respondents within each group. No abbreviations were used. Table 3 goes here - Fertility treatment following diagnosis was reported by 10.2%. At the time of the survey, 50.0% expressed a weak desire to have children, while 21.4% reported a strong desire, particularly younger and childless participants (Supplementary Table S4). 4. Unmet Needs and Support Received Beyond medical treatment, unmet support needs were assessed across eight domains (Table 4 ). Unmet needs were observed in all domains, though with varying frequency. Most frequently, participants reported uncertainty about the future (35.8%), fear of progression (31.2%), and bodily problems (32.1%). Unmet needs related to pain treatment were less common (15.6%), with 23.9% indicating that support had already been provided. Practical support needs, such as help with housework (12.9%) or everyday tasks (10.1%), were reported least frequently. With respect to mental health, 20.2% indicated at least a medium need for support with anxiety symptoms, and 16.5% with depressive symptoms. Table 4 Reported Unmet Needs Across Eight Support Domains (n = 109) Domain No need already supported low need medium need high need Pain † 48 (44.0%) 26 (23.9%) 16 (14.7%) 13 (11.9%) 4 (3.7%) Help with bodily problems 34 (31.2%) 20 (18.3%) 20 (18.3%) 18 (16.5%) 17 (15.6%) Help with housework 68 (62.4%) 17 (15.6%) 10 (9.2%) 10 (9.2%) 4 (3.7%) Help with everyday tasks 76 (69.7%) 13 (11.9%) 9 (8.3%) 9 (8.3%) 2 (1.8%) Anxiety symptoms 63 (57.8%) 10 (9.2%) 14 (12.8%) 16 (14.7%) 6 (5.5%) Depressive symptoms 63 (57.8%) 12 (11.0%) 14 (12.8%) 11 (10.0%) 7 (6.4%) Fear of disease progression 33 (30.3%) 12 (11.0%) 30 (27.5%) 18 (16.5%) 16 (14.7%) Uncertainty about future 40 (36.7%) 8 (7.3%) 22 (20.3%) 21 (19.3%) 18 (16.5%) † Unknown n = 2 (1.8%) Table 4 goes here - 4.1 Unmet Needs over time To explore changes over time, support needs were further examined by years since diagnosis (Table 5 ). For pain, the highest needs were reported 5–10 years post-diagnosis, where only 45.0% indicated no or low need, while one third had already received support and more than one fifth reported an open need (Supplementary Table S5). Similarly, for bodily problems, 38.7% in the 5–10 year group reported medium or high support needs, while 22.6% had already received support. By contrast, support needs regarding fear of progression showed a decline over time: within 0–<5 years, 50.0% reported medium or high need, compared to 35.5% at 5–<10 years and 18.4% beyond 10 years. Variations across groups were marginally significant (χ² = 9.46, p = 0.05), suggesting a trend towards decreasing psychological support needs with longer disease duration. Table 5 Support needs by time since diagnosis for pain, bodily problems and fear of progression. Domain Time Since Diagnosis No/Low Need Medium/High Need Already Supported Pain † 0–<5 years (n = 27) 18 (66.7%) 5 (18.5%) 4 (14.8%) 5– 10 years (n = 48) 32 (66.7%) 4 (8.3%) 12 (25.0%) Bodily Problems ‡ 0–<5 years (n = 28) 15 (53.6%) 8 (28.6%) 5 (17.9%) 5– 10 years (n = 49) 27 (55.1%) 14 (28.6%) 8 (16.3%) Fear of progression* ‡ 0–<5 years (n = 28) 13 (46.4%) 14 (50.0%) 1 (3.6%) 5–<10 years (n = 31) 16 (51.6%) 11 (35.5%) 4 (12.9%) ≥ 10 years (n = 49) 33 (67.3%) 9 (18.4%) 7 (14.3%) † For 3 patients the data was unknown/missing; n = 106 ‡ For 1 patient the data was unknown/missing; n = 108 *For fear of progression, a borderline significant association was found (χ² = 9.46, p = 0.05). χ² tests indicated no statistically significant group differences for pain (χ² = 6.29, p = 0.17) and bodily problems (χ² = 2.25, p = 0.69). Table 5 goes here - Discussion Impact on working life Gender distribution and age at diagnosis in our patient cohort is consistent with published data ( 12 ). Nearly half of participants had an officially recognized disability status, underscoring the long-term functional and social burden of DT. Around 10% had exited the workforce, markedly higher than the prevalence of disability pensions in the general German population (≈ 2%) ( 42 ) and far exceeding the 9.5% with recognized severe disability ( 43 ). While comparative data for other rare diseases are scarce, analyses from Crohn’s disease and ulcerative colitis illustrate that chronic conditions in young adults can carry disproportionate socioeconomic implications ( 44 ). DT patients therefore face a unique burden, losing work decades earlier than expected. Our findings extend survivorship literature by documenting the specific socioeconomic toll of DT in young adults. We observed a marked shift toward flexible work models, particularly part-time employment, with potential implications for future income and retirement pensions. This reflects the need for adaptable job arrangements and supportive workplace policies. Nearly half of participants reported being unable to continue on their intended career trajectory, most often due to physical but also psychological burdens, while one third cited compatibility with treatment as a reason. Consequences included reduced working hours (46%), job changes (39%), and financial losses (52%). These findings mirror survivorship data from other tumor populations. For example, studies in soft tissue sarcomas show high return-to-work rates but persistent reductions in quality of life and functioning ( 35 , 38 ). Similar patterns have been documented in broader cancer survivorship research, where fatigue, financial strain, and reduced work capacity are common long-term challenges ( 25 , 37 , 45 , 46 ). Analysis of financial toxicity in health care typically focus on the additional costs during or due to cancer treatment, such as travel to appointments, medications or employing a caregiver. Tools like the COST score ( 47 ) or the Financial Distress Questionnaire (FDQ) ( 48 ) are mainly validated in U.S. populations, whereas European tools were developed more recently ( 38 , 49 ). These tools look for short-term financial distress and its interplay with other HRQOL domains. In contrast, our data highlight the long-term impact of the disease, spanning decades, on the financial situation of patients relative to their original plans. The transition from surgery or radiation to oral tyrosine kinase inhibitors may improve compatibility with employment, though this remains to be investigated ( 50 , 51 ). Family planning and reproductive concerns More than half of participants had not completed family planning at diagnosis. Fertility concerns were highly prevalent, with nearly 60% reporting a strong need to discuss reproductive issues. Female participants expressed higher desire for children than males, with stronger intensity in younger and childless participants. Pregnancy has been associated with increased risk of progression in abdominal wall tumors, often following cesarean section scars, though evidence suggests it is not contraindicated ( 7 , 52 – 55 ). Nevertheless, clinical uncertainty and fear of progression contribute to emotional and psychosocial burden. Although most participants discussed fertility with a physician, only a minority consulted a reproductive medicine specialist, reflecting lack of structured referral pathways in rare tumors. Fertility treatment was ultimately pursued by only a small proportion, yet satisfaction with counseling was high. Our findings highlight the importance of early, systematic, and open discussions on reproductive planning in DT patients, consistent with broader AYA cancer survivorship literature linking fertility concerns to distress and long-term quality of life ( 56 – 58 ). Psychosocial and practical support needs Unmet needs were reported across all eight assessed domains, with uncertainty about the future (35.8%), fear of progression (31.2%), and bodily problems (32.1%) most prominent. Practical support needs such as household help were less frequent, suggesting preserved functional independence in many patients. Importantly, burdens often peaked 5–10 years after diagnosis, particularly regarding pain and bodily problems, whereas fear of progression decreased over time. This pattern reflects both long-term challenges and adaptive coping processes, aligning with observations in broader oncology and sarcoma populations ( 59 – 62 ). The high psychosocial distress observed in AYA populations is mirrored in our cohort, emphasizing the importance of sustained psycho-oncological care and patient advocacy resources ( 63 , 64 ). Despite challenges, many patients - particularly those in remission -reported high functioning, reflecting the variable but often manageable course of DT. Integrating person-centered survivorship models, as developed for childhood cancer survivors, may provide a valuable framework for DT patients ( 65 ). Strengths and Limitations This study is among the first to comprehensively assess the impact of DT on employment, family planning, and psychosocial well-being. Strengths include a relatively large DT-specific cohort, multiple recruitment pathways, and a mean disease history of ten years, enabling long-term perspectives. Our work adds to existing DT research by providing real-world, long-term life-course data on work, family, and psychosocial outcomes, thereby complementing recent efforts such as the GODDESS impact report, which primarily assessed symptom and functional impact in the context of clinical trials ( 66 ). Limitations include reliance on self-reported data, descriptive analyses with limited statistical power, and potential regional bias. The RNL index used to assess reintegration showed ceiling effects in this cohort, limiting sensitivity to nuanced life-course challenges. Descriptive results are reported in the suplemmentary Material Table S6 ( 41 ). Lessons to be learned Despite its non-malignant nature, DT requires structured long-term follow-up. Current practice often limits surveillance to early phases of watchful waiting, leaving gaps after treatment completion. Our findings indicate that minimal follow-up may be insufficient given the persistent functional and psychosocial challenges. Long-term care models developed for childhood cancer and other malignancies could serve as templates, with general practitioners and patient advocacy groups playing key roles in ensuring continuity of care. Conclusions DT has a profound and multifaceted impact on life-course trajectories, affecting employment, career development, and family planning. Structured return-to-work planning, early socioeconomic assessment, and fertility counseling should be integral to care. Beyond functional impairments, patients face enduring psychosocial burdens, including fear of progression and reduced future planning confidence, which justify survivorship care models usually reserved for malignant disease. Patient-reported outcomes proved essential to capture these dimensions, offering insights not visible through clinical endpoints. For rare, indolent tumors such as DT, care should evolve beyond tumor control to encompass long-term functionality, reproductive autonomy, and psychosocial resilience. Declarations Ethics approval and consent to participate: The study received ethical approval from the Technical University of Dresden (EK489112023). Clinical trial registration number: The study was registered at ClinicalTrials.gov (NCT06258421). Consent for publication: Not applicable Availability of data and materials: The datasets generated during and analyzed during the current study are available on reasonable request. Competing interests: The authors declare that they have no competing interests related to this work. Funding: The PROSa-DES study received a grant by the patient advocacy group SOS-desmoid e.V., Mannheim, Germany and support by the Desmoid Tumor Research Foundation (DTRF), Woodcliff Lake, NJ 07677, USA. Authors' contributions (alphabetical) : Christina Baumgarten conceptualization, resources, funding acquisition Martin Eichler conceptualization, project administration, resources, data curation, formal analysis, review & editing, supervision Rebekka Hoffmann investigation and provision of patient data, data curation Peter Hohenberger conceptualization, project administration, resources, investigation and provision of patient data, data curation, validation, review & editing, visualization, supervision Franka Menge investigation and provision of patient data, data curation, writing Markus Schuler Supervision, Review and Editing Sergio A. Zapata Bonilla conceptualization, writing draft, creation of the database, data curation, software, formal analysis, writing Acknowledgements: None beyond those described under Funding Authors' information (optional): not applicable AI Disclosure Statement: Generative artificial intelligence (ChatGPT-4o, OpenAI, 2025) was used only to improve language clarity and readability. No AI tools were used for data collection, analysis, or interpretation. All AI-assisted edits were reviewed and verified by the authors to ensure accuracy and integrity. References Reitamo JJ, Hayry P, Nykyri E, Saxen E. The desmoid tumor. I. Incidence, sex-, age- and anatomical distribution in the Finnish population. Am J Clin Pathol. 1982;77(6):665–73. Torres BS, Brown HG, Nunez J, Abongwa C, Hajjar FM, Sawh-Martinez RF, Lopez J. Pediatric Desmoid Tumor of the Head and Neck: A Systematic Review and Modified Framework for Management by Age Group. Plast Reconstr Surg Glob Open. 2024;12(9):e6122. 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Imatinib induces sustained progression arrest in RECIST progressive desmoid tumours: Final results of a phase II study of the German Interdisciplinary Sarcoma Group (GISG). Eur J Cancer. 2017;76:60–7. Gounder MM, Mahoney MR, Van Tine BA, Ravi V, Attia S, Deshpande HA, et al. Sorafenib for Advanced and Refractory Desmoid Tumors. N Engl J Med. 2018;379(25):2417–28. Kasper B, Baldini EH, Bonvalot S, Callegaro D, Cardona K, Colombo C, et al. Current Management of Desmoid Tumors: A Review. JAMA Oncol. 2024;10(8):1121–8. Timbergen MJM, Schut AW, Grunhagen DJ, Sleijfer S, Verhoef C. Active surveillance in desmoid-type fibromatosis: A systematic literature review. Eur J Cancer. 2020;137:18–29. Bonvalot S, Miah A, Kasper B. Active surveillance and emerging medical treatment options for desmoid: when and for whom? Curr Opin Oncol. 2024;36(4):263–8. Schut AW, Timbergen MJM, van Broekhoven DLM, van Dalen T, van Houdt WJ, Bonenkamp JJ, et al. A Nationwide Prospective Clinical Trial on Active Surveillance in Patients With Non-intraabdominal Desmoid-type Fibromatosis: The GRAFITI Trial. Ann Surg. 2023;277(4):689–96. de Campos FG, Perez RO, Imperiale AR, Seid VE, Nahas SC, Cecconello I. Evaluating causes of death in familial adenomatous polyposis. J Gastrointest Surg. 2010;14(12):1943–9. Napolitano A, Provenzano S, Colombo C, Vitellaro M, Brunello A, Badalamenti G et al. Familial adenomatosis polyposis-related desmoid tumours treated with low-dose chemotherapy: results from an international, multi-institutional, retrospective analysis. ESMO Open. 2020;5(1). Garg V, Gangadharaiah BB, Rastogi S, Upadhyay A, Barwad A, Dhamija E, Gamangatti S. Efficacy and tolerability of sorafenib in desmoid-type fibromatosis: A need to review dose. Eur J Cancer. 2023;186:142–50. Schut AW, Lidington E, Timbergen MJM, Younger E, van der Graaf WTA, van Houdt WJ et al. Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes. Cancers (Basel). 2022;14(12). Looi WS, Indelicato DJ, Rutenberg MS. The Role of Radiation Therapy for Symptomatic Desmoid Tumors. Curr Treat Options Oncol. 2021;22(4):34. Seidensaal K, Harrabi SB, Weykamp F, Herfarth K, Welzel T, Mechtersheimer G, et al. Radiotherapy in the treatment of aggressive fibromatosis: experience from a single institution. Radiat Oncol. 2020;15(1):143. Kasper B, Gounder M, Hernandez L, Baumgarten C, Ratan R. Capturing Patient Voice to Improve Outcomes That Matter to Patients with Desmoid Tumor. Cancer Manag Res. 2024;16:617–28. Schut AW, de Bruin LE, de Rooij BH, Lidington E, Timbergen MJM, van der Graaf WTA, et al. Physical symptom burden in patients with desmoid-type fibromatosis and its impact on health-related quality of life and healthcare use. Cancer Med. 2023;12(12):13661–74. Schut AW, Timbergen MJM, Nasserinejad K, van Dalen T, van Houdt WJ, Bonenkamp JJ, et al. Health-related Quality of Life of Patients With Non-Intra-abdominal Desmoid-Type Fibromatosis During Active Surveillance: Results of a Prospective Observational Study. Ann Surg. 2023;277(6):877–83. Eichler M, Hentschel L, Richter S, Hohenberger P, Kasper B, Andreou D et al. The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany-Cross-Sectional Results of a Nationwide Observational Study (PROSa). Cancers (Basel). 2020;12(12). Eichler M, Hentschel L, Singer S, Hornemann B, Richter S, Hofbauer C, et al. Health related Quality of Life over time in German sarcoma patients. An analysis of associated factors - results of the PROSa study. Front Endocrinol (Lausanne). 2023;14:1166838. Zapata Bonilla SA, Fried M, Singer S, Hentschel L, Richter S, Hohenberger P, et al. Working situation and burden of work limitations in sarcoma patients: results from the multi-center prospective PROSa study. J Cancer Res Clin Oncol. 2023;149(9):6009–21. Büttner M, Singer S, Hentschel L, Richter S, Hohenberger P, Kasper B, et al. Financial toxicity in sarcoma patients and survivors in Germany: results from the multicenter PROSa study. Support Care Cancer. 2022;30(1):187–96. Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract. 2009;15(4):602–6. Lehmann C, Koch U, Mehnert A. Psychometric properties of the German version of the Short-Form Supportive Care Needs Survey Questionnaire (SCNS-SF34-G). Support Care Cancer. 2012;20(10):2415–24. Wood-Dauphinee SL, Opzoomer MA, Williams JI, Marchand B, Spitzer WO. Assessment of global function: The Reintegration to Normal Living Index. Arch Phys Med Rehabil. 1988;69(8):583–90. Rentenversicherung D. Statistik der Rentenzugänge: Erwerbsminderungsrenten im Jahr 2024 Berlin: Deutsche Rentenversicherung Bund; 2024 [Available from: https://statistik-rente.de/drv/extern/ Bundesamt SS, Statistisches Bundesamt. 2023 Wiesbaden: ; 2024 [Available from: https://www.destatis.de/DE/Presse/Pressemitteilungen/2024/07/PD24_281_227.html Sonnenberg A. Disability from inflammatory bowel disease among employees in West Germany. Gut. 1989;30(3):367–70. van Muijen P, Duijts SFA, Bonefaas-Groenewoud K, van der Beek AJ, Anema JR. Predictors of fatigue and work ability in cancer survivors. Occup Med (Lond). 2017;67(9):703–11. Kollár A, Müller S, Limacher A, Briner I, Klenke F, Bernhard J. Return to Work and Quality of Life in Disease-Free Adult Patients with Soft-Tissue and Bone Sarcoma of the Extremity. Praxis (Bern 1994). 2021;110(1):22–9. de Souza JA, Yap BJ, Hlubocky FJ, Wroblewski K, Ratain MJ, Cella D, Daugherty CK. The development of a financial toxicity patient-reported outcome in cancer: The COST measure. Cancer. 2014;120(20):3245–53. Raggini E, Mattavelli D, Zigliani G, Bossi P, Piazza C. Measuring financial toxicity in head and neck cancer: a systematic review. Acta Otorhinolaryngol Ital. 2024;44(1):1–12. Vancoppenolle J, Franzen N, Azarang L, Juslin T, Krini M, Lubbers T, et al. Financial toxicity and socioeconomic impact of cancer in Europe. ESMO Open. 2025;10(6):105293. Tsukamoto S, Tanzi P, Mavrogenis AF, Akahane M, Kido A, Tanaka Y, et al. Upfront surgery is not advantageous compared to more conservative treatments such as observation or medical treatment for patients with desmoid tumors. BMC Musculoskelet Disord. 2021;22(1):12. Kasper B, Baldini EH, Bonvalot S, Callegaro D, Cardona K, Colombo C, et al. Current Management of Desmoid Tumors: A Review. JAMA Oncol. 2024;10(8):1121–8. De Cian F, Delay E, Rudigoz RC, Ranchere D, Rivoire M. Desmoid tumor arising in a cesarean section scar during pregnancy: monitoring and management. Gynecol Oncol. 1999;75(1):145–8. Camiel MR, Solish GI. Desmoid tumor during pregnancy. Am J Obstet Gynecol. 1982;144(8):988–9. Drabbe C, van der Graaf WTA, Husson O, Bonenkamp JJ, Verhoef C, van Houdt WJ. Pregnancy-associated desmoid fibromatosis: A Dutch multi-centre retrospective study. Eur J Surg Oncol. 2023;49(5):921–7. Fiore M, Ljevar S, Raut CP, Personeni G, Rabih M, Gladdy R, et al. Impact and safety of pregnancy on desmoid fibromatosis management in the era of active surveillance. An international multicenter retrospective observational study. Eur J Cancer. 2025;222:115474. Logan S, Anazodo A. The psychological importance of fertility preservation counseling and support for cancer patients. Acta Obstet Gynecol Scand. 2019;98(5):583–97. Meernik C, Engel SM, Wardell A, Baggett CD, Gupta P, Rodriguez-Ormaza N, et al. Disparities in fertility preservation use among adolescent and young adult women with cancer. J Cancer Surviv. 2023;17(5):1435–44. Letourneau JM, Ebbel EE, Katz PP, Katz A, Ai WZ, Chien AJ, et al. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer. 2012;118(6):1710–7. Hall DL, Jimenez RB, Perez GK, Rabin J, Quain K, Yeh GY, et al. Fear of Cancer Recurrence: A Model Examination of Physical Symptoms, Emotional Distress, and Health Behavior Change. J Oncol Pract. 2019;15(9):e787–97. Meek C, Baliousis M. The Psychological Impact of Sarcoma From Pre-Diagnosis to Post-Treatment, a Meta-Synthesis. Psychooncology. 2025;34(5):e70174. Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, et al. Patients' supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol. 2009;27(36):6172–9. Costanzo ES, Ryff CD, Singer BH. Psychosocial adjustment among cancer survivors: findings from a national survey of health and well-being. Health Psychol. 2009;28(2):147–56. Timko Olson ER, Olson A, Driscoll M, Bliss DZ. Psychosocial Factors Affecting Wellbeing and Sources of Support of Young Adult Cancer Survivors: A Scoping Review. Nurs Rep. 2024;14(4):4006–21. Eichler M, Singer S, Hentschel L, Hornemann B, Hohenberger P, Kasper B, et al. Die psychoonkologische Versorgungssituation von Patienten mit Weichteilsarkomen. Die Onkologie. 2023;29(2):147–54. van Kalsbeek RJ, Mulder RL, Haupt R, Muraca M, Hjorth L, Follin C, et al. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer. Eur J Cancer. 2022;162:34–44. Gounder MM, Atkinson TM, Bell T, Daskalopoulou C, Griffiths P, Martindale M, et al. GOunder/Desmoid Tumor Research Foundation DEsmoid Symptom/Impact Scale (GODDESS((c))): psychometric properties and clinically meaningful thresholds as assessed in the Phase 3 DeFi randomized controlled clinical trial. Qual Life Res. 2023;32(10):2861–73. Supplementary Files Additionalfile1.SupplementaryTablesS16.docx Cite Share Download PDF Status: Under Revision Version 1 posted Editorial decision: Revise before peer review 04 Mar, 2026 Reviewers invited by journal 03 Feb, 2026 Editor invited by journal 19 Nov, 2025 Editor assigned by journal 04 Nov, 2025 First submitted to journal 25 Oct, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7947255","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":585198975,"identity":"2aa006da-7403-4d43-8a8d-68fbf83d718c","order_by":0,"name":"Sergio Armando Zapata Bonilla","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA50lEQVRIiWNgGAWjYDCCA3AWY+MDIMnDR6wWCaCWZgOQFjYStDCwgQgGglr4bh9//OHnDrs6/mmH2yq/5tjJsDEwP3x0A48WyXM5Boa9Z5IlJG4ntt2W3ZYMdBibsXEOHi0GZ3gYEnjbmCUYQFoktzEDtfCwSePXwv7g4N+2egl5oJZiyW31xGhhMGzmbTssYQDUwvhx22HCWiTP8Bgzy545LrnxdmKzNOO24zxszAT8wneG/fHHtzuq+eVupz/8+HNbtT0/e/PDx/i0gAFjA4Rm5gGThJQja2H8QYzqUTAKRsEoGHEAACgnSIYTJPMVAAAAAElFTkSuQmCC","orcid":"https://orcid.org/0000-0002-0193-6201","institution":"University Cancer Center Mainz. University Hospital Johannes Gutenberg","correspondingAuthor":true,"prefix":"","firstName":"Sergio","middleName":"Armando Zapata","lastName":"Bonilla","suffix":""},{"id":585198976,"identity":"3404389f-8dac-4538-9416-a26dbf3d1bab","order_by":1,"name":"Rebekka Hoffmann","email":"","orcid":"","institution":"Dresden University Hospital: Universitatsklinikum Carl Gustav Carus","correspondingAuthor":false,"prefix":"","firstName":"Rebekka","middleName":"","lastName":"Hoffmann","suffix":""},{"id":585198977,"identity":"612f8840-3922-4e11-b17b-791c601d6445","order_by":2,"name":"Markus K. Schuler","email":"","orcid":"","institution":"Dresden University Hospital: Universitatsklinikum Carl Gustav Carus","correspondingAuthor":false,"prefix":"","firstName":"Markus","middleName":"K.","lastName":"Schuler","suffix":""},{"id":585198978,"identity":"07944505-8d76-4c98-a64b-b0981140ad51","order_by":3,"name":"Franka Menge","email":"","orcid":"","institution":"Universitätsklinikum Mannheim: Universitatsklinikum Mannheim","correspondingAuthor":false,"prefix":"","firstName":"Franka","middleName":"","lastName":"Menge","suffix":""},{"id":585198979,"identity":"606cf712-948e-4744-acaa-3c2ecd9c5d92","order_by":4,"name":"Christina Baumgarten","email":"","orcid":"","institution":"SOS Desmoid","correspondingAuthor":false,"prefix":"","firstName":"Christina","middleName":"","lastName":"Baumgarten","suffix":""},{"id":585198980,"identity":"4c8e39cd-1c1c-4c75-9838-32a9f1ad8446","order_by":5,"name":"Martin Eichler","email":"","orcid":"","institution":"National Center for Tumor Diseases Dresden: Nationales Centrum fur Tumorerkrankungen Dresden","correspondingAuthor":false,"prefix":"","firstName":"Martin","middleName":"","lastName":"Eichler","suffix":""},{"id":585198981,"identity":"aea28882-bfaf-4c27-a9f5-1ea1b9438dfd","order_by":6,"name":"Peter Hohenberger","email":"","orcid":"","institution":"University Hospital Mannheim of University of Heidelberg Faculty of Medicine Mannheim: Universitatsklinikum Mannheim","correspondingAuthor":false,"prefix":"","firstName":"Peter","middleName":"","lastName":"Hohenberger","suffix":""}],"badges":[],"createdAt":"2025-10-27 10:49:47","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7947255/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7947255/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102182089,"identity":"ffcf8f1c-3ab9-44df-9b80-6e6750f7f42a","added_by":"auto","created_at":"2026-02-09 07:27:39","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":140245,"visible":true,"origin":"","legend":"\u003cp\u003eTransitions in employment status from time of diagnosis to date of survey.\u003c/p\u003e","description":"","filename":"Figure1Emplymenttransitions.jpg","url":"https://assets-eu.researchsquare.com/files/rs-7947255/v1/1acd7beb5c04516329742373.jpg"},{"id":102296845,"identity":"bb5f65c2-cca5-4067-9bab-2b608c33ccde","added_by":"auto","created_at":"2026-02-10 10:22:12","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":934422,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7947255/v1/3fa63bf0-f70e-4cdd-b90c-787473af7a61.pdf"},{"id":102182095,"identity":"4ad49322-58b9-4511-b5a6-d70ec987ba96","added_by":"auto","created_at":"2026-02-09 07:27:41","extension":"docx","order_by":6,"title":"","display":"","copyAsset":false,"role":"supplement","size":47153,"visible":true,"origin":"","legend":"","description":"","filename":"Additionalfile1.SupplementaryTablesS16.docx","url":"https://assets-eu.researchsquare.com/files/rs-7947255/v1/c93ce41de2e12a4720531452.docx"}],"financialInterests":"","formattedTitle":"Long-term impact of sporadic desmoid fibromatosis on work life, reproductive health and support needs. Results from the PROSa-DES study.","fulltext":[{"header":"Introduction","content":"\u003cp\u003eDesmoid tumors (DT, aggressive fibromatosis) represent a proliferative, non-metastasizing disease classified by ICD-10-WHO code D48.1. It is defined as clonal fibroblastic proliferation that arises in the soft tissues and fascia and is characterized by an infiltrative growth to all surrounding structures. DTs can develop in every part of the body (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The etiology of DTs is multifactorial with 85\u0026ndash;90% of DTs are sporadically and another 10\u0026ndash;25% develop in patients affected by familiar adenomatous polyposis (FAP) (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). In the sporadic cases a point mutation in the \u003cem\u003eCTNNB1\u003c/em\u003e gene is pathognomonic whereas in the hereditary cases a mutation in the \u003cem\u003eAPC\u003c/em\u003e gene can be found (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). Up to 30% of the patients develop a desmoid with anteceding trauma (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). The clinical course is highly variable, with some tumors showing spontaneous regression (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) and others requiring repeated intervention (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOne of the defining characteristics of DT is its predominance in young females, who account for about two thirds of the cases. The median age of diagnosis is around 35 years (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), however, there is also a considerable proportion of children affected (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). The age distribution introduces a distinct set of challenges, as many patients are in the midst of establishing careers, starting families, and planning their future. The disease, and its treatment, can interfere with critical life milestones in ways not typically seen in older cancer populations.\u003c/p\u003e \u003cp\u003eHistorically, treatment options have preferred surgery and radiotherapy to systemic therapies such as systemic chemotherapy (\u003cspan additionalcitationids=\"CR16\" citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). More recently, tyrosine kinase inhibitors like imatinib, sorafenib, pazopanib or nirogacestat were introduced to therapy. The latter has received FDA approval and EMA recommended the granting of a marketing authorization on June 25, 2025 (\u003cspan additionalcitationids=\"CR19 CR20\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). All drugs demonstrated tumor control and improvement in patient-reported outcomes in prospective or randomized trials (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). Nonetheless, even with less invasive management strategies like active surveillance (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e), the chronic and unpredictable nature of the disease often leads to functional limitations, emotional distress, and disruptions in life planning (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePatients with sporadic desmoids generally have no increased mortality compared to the general population, whereas patients with FAP-associated desmoids have life-threatening complications mainly through intestinal obstruction (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). However, all desmoid patients may suffer from significant morbidity including side effects of drugs or late effects of radiation therapy (\u003cspan additionalcitationids=\"CR29 CR30\" citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Despite increased interest in health-related quality of life (HRQoL) among oncology populations, research on DT has been slow to develop. Recent studies have begun to document the physical and psychological burden of DT using both generic and disease-specific instruments such as the DTF-QoL (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan additionalcitationids=\"CR33\" citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). Outcomes like return to work (RTW), career trajectory, and reproductive decision-making have not yet been addressed, despite their high relevance in a young cohort.\u003c/p\u003e \u003cp\u003eStudies in soft tissue sarcoma populations have begun to fill the gaps. The PROSa study was a nationwide prospective cohort examining health-related quality of life and survivorship outcomes in sarcoma patients (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Within this framework, our study group has previously reported on return-to-work limitations and quality-of-life impairments in sarcoma patients, including analyses of employment status, work ability, and associated sociodemographic factors (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). As only a few patients with DT were included in the PROSa study (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e) and were not analyzed separately, thus, impactful data are lacking. The PROSa-DES study aims to address the gap by evaluating how desmoid fibromatosis affects physical functioning, employment, return to normal work after treatment, family planning, and unmet psychosocial needs. As the typically affected young adults are navigating critical life phases, this research highlights areas of support that may be overlooked in conventional oncologic care.\u003c/p\u003e \u003cp\u003eWe set to analyze the following research questions:\u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eWhat is the impact of a diagnosis of DT on patients\u0026rsquo; working lives, including employment status and career development?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eHow does DT influence family planning, particularly patients' desire to have children and their reproductive decisions?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003eWhat unmet needs or support gaps exist in this patient population, particularly in psychosocial and practical domains?\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e "},{"header":"Methods","content":" \u003cp\u003eWe conducted the cross-sectional, questionnaire-based observational study \u003cem\u003eBurden of Disease and Living Situation in Desmoid Patients (PROSa-DES)\u003c/em\u003e between November 2023 and June 2024, enrolling adult patients with histologically confirmed DTs. Participants were recruited through two pathways. First, patients were identified from the long-term follow-up cohort at University Hospital Mannheim, where those with a disease history of at least three years and regular outpatient visits were approached. Second, additional patients were recruited via convenience sampling, using calls for participation disseminated through the SOS Desmoid patient group (sos-desmoid.de) and the German Sarcoma Foundation (sarkome.de). Interested patients contacted the study center at University Hospital Dresden via email or were invited by letter if they had previously been treated at Mannheim.\u003c/p\u003e \u003cp\u003eQuestionnaires were distributed and returned by mail. Clinical data were extracted from medical records at University Hospital Mannheim for patients recruited through the center. For patients enrolled via convenience sampling, relevant clinical information was gathered from recent physician letters submitted by the participants or retrieved directly from current practitioners with patient consent.\u003c/p\u003e \u003cp\u003eEligible participants were adults (\u0026ge;\u0026thinsp;18 years) with histologically confirmed DTs and sufficient cognitive and linguistic capacity to complete the questionnaires. Patients with FAP-associated DTs were excluded due to distinct clinical features, including different tumor locations, treatment approaches, and associated risks for malignancies. All participants provided informed consent prior to enrollment. The study received ethical approval from the Technical University of Dresden (EK489112023) and was registered at ClinicalTrials.gov (NCT06258421).\u003c/p\u003e \u003cp\u003eThe questionnaire package included standardized patient-reported outcome (PRO) measures and collected sociodemographic and clinical data. For the present analysis, particular focus was placed on indicators such as employment and fertility history. To assess unmet needs we used a shortened version of the Supportive Care Needs Survey (SCNS), a validated tool designed to assess unmet needs in psychological, physical, informational, and practical domains (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). To analyze the reintegration to normal living, we used the Reintegration to Normal Living (RNL), a questionnaire designed to assess the consequences of disease and its treatment on a patient's daily life (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e). Clinical parameters, including treatment timelines, disease history, and current status, were also captured. Where applicable, internal consistency checks were performed by cross-validating clinical data with patient-reported responses.\u003c/p\u003e \u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eContinuous variables were presented with mean and standard deviation (SD). Categorical variables were reported with absolute and relative frequencies. Variable values with less than 4 values were compiled in the variable \u0026ldquo;other\u0026rdquo;. To analyze group differences in supportive care needs, we used the Chi-square (χ\u0026sup2;) test.\u003c/p\u003e \u003cp\u003eStatistical analyses were exploratory and performed using SPSS V.26 (IBM Corporation, Armonk, New York, USA).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e1. Demographics and Baseline Employment\u003c/p\u003e \u003cp\u003eOf 165 contacted patients, 109 with desmoid tumors (DT) were included in the final analysis. The cohort was predominantly female (69.7%), with a mean age of 45.7 years and a mean age at diagnosis of 35.8 years. Two-thirds (67.0%) had a secondary school leaving certificate, and the mean net household income was \u0026euro;2,542. Most participants were white-collar workers (72.5%) and lived in a partnership (79.8%); 59.6% reported having children. At the time of diagnosis, 54.1% had not yet completed family planning. Their demographic and socioeconomic characteristics are summarized in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic Characteristics and Socioeconomic factors\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariable\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eValue\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003en\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e%\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAll\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e109\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e100\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e76\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e69.7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e28.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDiverse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18\u0026ndash;35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26.6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e36\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e25.7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e46\u0026ndash;55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26.6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;55\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e20.2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean/ SD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e45.72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e14.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge at Diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean/ SD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e35.8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e14.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eTime since diagnosis\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0-\u0026lt;5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26.6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5-\u0026lt;10 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e28.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;10 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e45.0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean/SD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9.5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eDisease Status\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComplete Remission\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e28.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePartial Remission \u0026amp; Stable Disease\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e55\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProgress\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUnknown/not accessable\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eEducation/ Income/ Occupation\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eSchool Education\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUp to intermediate school leaving certificate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSecondary school leaving certificate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e73\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e67\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eNet household income\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1750 \u0026euro;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1750 \u0026euro; \u0026minus;\u0026thinsp;2458 \u0026euro;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e24.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2458 \u0026euro; \u0026minus;\u0026thinsp;3490 \u0026euro;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e22.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;3491 \u0026euro;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e22.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean/ SD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2,542\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1,233\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eOccupation\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBlue collar\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6,4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCivil\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhite collar\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e79\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e72.5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSelf-employed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6,4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther, unknown\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2.7\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003ePartnership and Children\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003ePartnership\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e20.2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e87\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e79.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eChildren below 14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e65.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e34.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eChildren overall\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e40.4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e19.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7.3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003eCompleted family planning at diagnosis\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e45.9\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e54.1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"4\"\u003eSD\u0026thinsp;=\u0026thinsp;standard deviation; \u0026euro; = Euro.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eRegarding disease status, 28.4% reported complete remission, 55.0% partial response or stable disease, and 11.0% progression, while for 5.5%, disease status was unknown or not accessible.\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003e- Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e goes here \u0026ndash;\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e2. Employment Situation and Impact on Professional Development\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eEmployment and disability status at diagnosis and at the time of survey illustrated changes in participants\u0026rsquo; occupational situation (Fig.\u0026nbsp;1). Among the 49 participants employed full-time at diagnosis, 51.0% remained in full-time roles at follow-up, 20.4% shifted to part-time work, 12.2% entered old-age retirement, 10.2% transitioned to disability pension, and 6.1% moved into other categories. Of the 30 participants in part-time employment, 66.7% remained part-time, 13.3% moved to full-time employment, 16.7% transitioned to disability pension, and 3.3% became unemployed. Participants who were students at diagnosis (n\u0026thinsp;=\u0026thinsp;18) predominantly entered the workforce. The proportion receiving disability pensions increased from 0.9% at diagnosis to 10.1% at follow-up, while the proportion of retirees rose from 3.7% to 11.0%. Overall, a shift towards part-time employment was observed across baseline categories.\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eFigure 1. Transitions in employment status from time of diagnosis to date of survey.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eEmployment trajectories of participants from diagnosis to the time of survey are shown, illustrating retention in full-time or part-time work, transitions to retirement or disability pension, and movement between categories. Detailed numerical values are provided in Supplementary Table \u003cspan refid=\"MOESM1\" class=\"InternalRef\"\u003eS1\u003c/span\u003e. -\u003c/p\u003e \u003cp\u003eCareer trajectory changes were further examined across baseline employment groups (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Overall, 46.6% reported having to change their intended career trajectory. The continuation of career plans was highest among part-time workers (63.3%), compared to 49.0% of full-time employees and 44.4% of students or trainees.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eChanges in the career path\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmployment Status at Diagnosis\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes, continued career\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNo, did not continue career\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFull-Time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e24 (49.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e25 (51.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePart-Time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e19 (63.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e11 (36.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eStudent, Trainee (University, School)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e8 (44.4%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e10 (55.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther / Non Workforce\u003csup\u003e\u0026dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e4 (66.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2 (33.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e55 (53.4%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e48 (46.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e103 \u003csup\u003e\u0026Dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"4\"\u003e\u003csup\u003e\u0026dagger;\u003c/sup\u003eIncludes Disability Pension, Homemaker, and Other categories.\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"4\"\u003e\u003csup\u003e\u0026Dagger;\u003c/sup\u003eMissing data (n\u0026thinsp;=\u0026thinsp;6)\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e goes here -\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eAmong those who altered their career trajectory, 89.9% cited reduced physical resilience, 56.2% psychological resilience, and 31.3% compatibility with ongoing therapy as reasons. Consequences included financial losses (52.2%), reduced working hours (45.7%), job changes (39.1%), and other restrictions such as reduced capacity, difficulties in securing disability benefits, or loss of leadership positions (34.8%). A few participants reported early retirement or changes in academic or professional plans (Supplementary Table S2).\u003c/p\u003e \u003cp\u003e3. Impact on Family Planning and Fertility issues\u003c/p\u003e \u003cp\u003eAs outlined above, a majority had not completed family planning at the time of diagnosis (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Prior to diagnosis, 52.6% reported a strong desire to have children, most frequently among women (58.5%). After diagnosis, 59.6% expressed a strong need to discuss fertility concerns, again most commonly among women (65.9%) (Supplementary Table S3). The majority reported having discussed fertility concerns with a physician, but only a minority consulted a reproductive medicine specialist. Satisfaction with counseling was high (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eType of fertility counseling received and satisfaction with the counseling\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eType of counseling\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMetric\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"5\" rowspan=\"6\"\u003e \u003cp\u003ePhysician (n\u0026thinsp;=\u0026thinsp;58)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e46 (79.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (21.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eSatisfaction (n\u0026thinsp;=\u0026thinsp;46)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNot or barely satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (17.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSomewhat satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (21.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStrongly or absolutely satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28 (60.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"5\" rowspan=\"6\"\u003e \u003cp\u003eTalked to a reproductive medicine specialist (n\u0026thinsp;=\u0026thinsp;10)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (17.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e48 (82.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c3\" namest=\"c2\"\u003e \u003cp\u003eSatisfaction (n\u0026thinsp;=\u0026thinsp;46)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNot or barely satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSomewhat satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eStrongly or absolutely satisfied\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (70)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003eNote: Percentages refer to proportion of respondents within each group. No abbreviations were used.\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e goes here -\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eFertility treatment following diagnosis was reported by 10.2%. At the time of the survey, 50.0% expressed a weak desire to have children, while 21.4% reported a strong desire, particularly younger and childless participants (Supplementary Table S4).\u003c/p\u003e \u003cp\u003e4. Unmet Needs and Support Received\u003c/p\u003e \u003cp\u003eBeyond medical treatment, unmet support needs were assessed across eight domains (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e). Unmet needs were observed in all domains, though with varying frequency. Most frequently, participants reported uncertainty about the future (35.8%), fear of progression (31.2%), and bodily problems (32.1%). Unmet needs related to pain treatment were less common (15.6%), with 23.9% indicating that support had already been provided. Practical support needs, such as help with housework (12.9%) or everyday tasks (10.1%), were reported least frequently. With respect to mental health, 20.2% indicated at least a medium need for support with anxiety symptoms, and 16.5% with depressive symptoms.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eReported Unmet Needs Across Eight Support Domains (n\u0026thinsp;=\u0026thinsp;109)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNo need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ealready supported\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003elow need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003emedium need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003ehigh need\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePain\u003csup\u003e\u0026dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e48 (44.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e26 (23.9%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e16 (14.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e13 (11.9%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e4 (3.7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHelp with bodily problems\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e34 (31.2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e20 (18.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e20 (18.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e18 (16.5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e17 (15.6%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHelp with housework\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e68 (62.4%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e17 (15.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e10 (9.2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e10 (9.2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e4 (3.7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHelp with everyday tasks\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e76 (69.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e13 (11.9%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e9 (8.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e9 (8.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e2 (1.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAnxiety symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e63 (57.8%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e10 (9.2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e14 (12.8%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e16 (14.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e6 (5.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDepressive symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e63 (57.8%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12 (11.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e14 (12.8%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e11 (10.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e7 (6.4%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFear of disease progression\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e33 (30.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12 (11.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e30 (27.5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e18 (16.5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e16 (14.7%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUncertainty about future\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e40 (36.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e8 (7.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e22 (20.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e21 (19.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\"\u003e \u003cp\u003e18 (16.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003e\u003csup\u003e\u0026dagger;\u003c/sup\u003eUnknown n\u0026thinsp;=\u0026thinsp;2 (1.8%)\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e goes here -\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003e4.1 Unmet Needs over time\u003c/p\u003e \u003cp\u003eTo explore changes over time, support needs were further examined by years since diagnosis (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e). For pain, the highest needs were reported 5\u0026ndash;10 years post-diagnosis, where only 45.0% indicated no or low need, while one third had already received support and more than one fifth reported an open need (Supplementary Table S5). Similarly, for bodily problems, 38.7% in the 5\u0026ndash;10 year group reported medium or high support needs, while 22.6% had already received support. By contrast, support needs regarding fear of progression showed a decline over time: within 0\u0026ndash;\u0026lt;5 years, 50.0% reported medium or high need, compared to 35.5% at 5\u0026ndash;\u0026lt;10 years and 18.4% beyond 10 years. Variations across groups were marginally significant (χ\u0026sup2; = 9.46, p\u0026thinsp;=\u0026thinsp;0.05), suggesting a trend towards decreasing psychological support needs with longer disease duration.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSupport needs by time since diagnosis for pain, bodily problems and fear of progression.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTime Since Diagnosis\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNo/Low Need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eMedium/High Need\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eAlready Supported\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003ePain\u003csup\u003e\u0026dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u0026ndash;\u0026lt;5 years (n\u0026thinsp;=\u0026thinsp;27)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e18 (66.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e5 (18.5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e4 (14.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u0026ndash;\u0026lt;10 years (n\u0026thinsp;=\u0026thinsp;31)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e14 (45.2%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e7 (22.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e10 (32.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;10 years (n\u0026thinsp;=\u0026thinsp;48)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e32 (66.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e4 (8.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e12 (25.0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eBodily Problems\u003csup\u003e\u0026Dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u0026ndash;\u0026lt;5 years (n\u0026thinsp;=\u0026thinsp;28)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e15 (53.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e8 (28.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e5 (17.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u0026ndash;\u0026lt;10 years (n\u0026thinsp;=\u0026thinsp;31)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e12 (38.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e12 (38.7%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e7 (22.6%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;10 years (n\u0026thinsp;=\u0026thinsp;49)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e27 (55.1%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e14 (28.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e8 (16.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eFear of progression*\u003csup\u003e\u0026Dagger;\u003c/sup\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0\u0026ndash;\u0026lt;5 years (n\u0026thinsp;=\u0026thinsp;28)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e13 (46.4%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e14 (50.0%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e1 (3.6%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u0026ndash;\u0026lt;10 years (n\u0026thinsp;=\u0026thinsp;31)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e16 (51.6%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e11 (35.5%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e4 (12.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;10 years (n\u0026thinsp;=\u0026thinsp;49)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e33 (67.3%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e9 (18.4%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e7 (14.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003csup\u003e\u0026dagger;\u003c/sup\u003e For 3 patients the data was unknown/missing; n\u0026thinsp;=\u0026thinsp;106\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e\u003csup\u003e\u0026Dagger;\u003c/sup\u003e For 1 patient the data was unknown/missing; n\u0026thinsp;=\u0026thinsp;108\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"5\"\u003e*For fear of progression, a borderline significant association was found (χ\u0026sup2; = 9.46, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.05). χ\u0026sup2; tests indicated no statistically significant group differences for pain (χ\u0026sup2; = 6.29, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.17) and bodily problems (χ\u0026sup2; = 2.25, \u003cem\u003ep\u003c/em\u003e\u0026thinsp;=\u0026thinsp;0.69).\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e goes here -\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eImpact on working life\u003c/p\u003e \u003cp\u003eGender distribution and age at diagnosis in our patient cohort is consistent with published data (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Nearly half of participants had an officially recognized disability status, underscoring the long-term functional and social burden of DT. Around 10% had exited the workforce, markedly higher than the prevalence of disability pensions in the general German population (\u0026asymp;\u0026thinsp;2%) (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e) and far exceeding the 9.5% with recognized severe disability (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e). While comparative data for other rare diseases are scarce, analyses from Crohn\u0026rsquo;s disease and ulcerative colitis illustrate that chronic conditions in young adults can carry disproportionate socioeconomic implications (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). DT patients therefore face a unique burden, losing work decades earlier than expected. Our findings extend survivorship literature by documenting the specific socioeconomic toll of DT in young adults.\u003c/p\u003e \u003cp\u003eWe observed a marked shift toward flexible work models, particularly part-time employment, with potential implications for future income and retirement pensions. This reflects the need for adaptable job arrangements and supportive workplace policies. Nearly half of participants reported being unable to continue on their intended career trajectory, most often due to physical but also psychological burdens, while one third cited compatibility with treatment as a reason. Consequences included reduced working hours (46%), job changes (39%), and financial losses (52%). These findings mirror survivorship data from other tumor populations. For example, studies in soft tissue sarcomas show high return-to-work rates but persistent reductions in quality of life and functioning (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). Similar patterns have been documented in broader cancer survivorship research, where fatigue, financial strain, and reduced work capacity are common long-term challenges (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e). Analysis of financial toxicity in health care typically focus on the additional costs during or due to cancer treatment, such as travel to appointments, medications or employing a caregiver. Tools like the COST score (\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e) or the Financial Distress Questionnaire (FDQ) (\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e) are mainly validated in U.S. populations, whereas European tools were developed more recently (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e). These tools look for short-term financial distress and its interplay with other HRQOL domains. In contrast, our data highlight the long-term impact of the disease, spanning decades, on the financial situation of patients relative to their original plans. The transition from surgery or radiation to oral tyrosine kinase inhibitors may improve compatibility with employment, though this remains to be investigated (\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFamily planning and reproductive concerns\u003c/p\u003e \u003cp\u003eMore than half of participants had not completed family planning at diagnosis. Fertility concerns were highly prevalent, with nearly 60% reporting a strong need to discuss reproductive issues. Female participants expressed higher desire for children than males, with stronger intensity in younger and childless participants. Pregnancy has been associated with increased risk of progression in abdominal wall tumors, often following cesarean section scars, though evidence suggests it is not contraindicated (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan additionalcitationids=\"CR53 CR54\" citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e). Nevertheless, clinical uncertainty and fear of progression contribute to emotional and psychosocial burden.\u003c/p\u003e \u003cp\u003eAlthough most participants discussed fertility with a physician, only a minority consulted a reproductive medicine specialist, reflecting lack of structured referral pathways in rare tumors. Fertility treatment was ultimately pursued by only a small proportion, yet satisfaction with counseling was high. Our findings highlight the importance of early, systematic, and open discussions on reproductive planning in DT patients, consistent with broader AYA cancer survivorship literature linking fertility concerns to distress and long-term quality of life (\u003cspan additionalcitationids=\"CR57\" citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e).\u003c/p\u003e \u003cp\u003ePsychosocial and practical support needs\u003c/p\u003e \u003cp\u003eUnmet needs were reported across all eight assessed domains, with uncertainty about the future (35.8%), fear of progression (31.2%), and bodily problems (32.1%) most prominent. Practical support needs such as household help were less frequent, suggesting preserved functional independence in many patients. Importantly, burdens often peaked 5\u0026ndash;10 years after diagnosis, particularly regarding pain and bodily problems, whereas fear of progression decreased over time. This pattern reflects both long-term challenges and adaptive coping processes, aligning with observations in broader oncology and sarcoma populations (\u003cspan additionalcitationids=\"CR60 CR61\" citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe high psychosocial distress observed in AYA populations is mirrored in our cohort, emphasizing the importance of sustained psycho-oncological care and patient advocacy resources (\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e, \u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e). Despite challenges, many patients - particularly those in remission -reported high functioning, reflecting the variable but often manageable course of DT. Integrating person-centered survivorship models, as developed for childhood cancer survivors, may provide a valuable framework for DT patients (\u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStrengths and Limitations\u003c/p\u003e \u003cp\u003eThis study is among the first to comprehensively assess the impact of DT on employment, family planning, and psychosocial well-being. Strengths include a relatively large DT-specific cohort, multiple recruitment pathways, and a mean disease history of ten years, enabling long-term perspectives. Our work adds to existing DT research by providing real-world, long-term life-course data on work, family, and psychosocial outcomes, thereby complementing recent efforts such as the GODDESS impact report, which primarily assessed symptom and functional impact in the context of clinical trials (\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e). Limitations include reliance on self-reported data, descriptive analyses with limited statistical power, and potential regional bias. The RNL index used to assess reintegration showed ceiling effects in this cohort, limiting sensitivity to nuanced life-course challenges. Descriptive results are reported in the suplemmentary Material Table S6 (\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eLessons to be learned\u003c/p\u003e \u003cp\u003eDespite its non-malignant nature, DT requires structured long-term follow-up. Current practice often limits surveillance to early phases of watchful waiting, leaving gaps after treatment completion. Our findings indicate that minimal follow-up may be insufficient given the persistent functional and psychosocial challenges. Long-term care models developed for childhood cancer and other malignancies could serve as templates, with general practitioners and patient advocacy groups playing key roles in ensuring continuity of care.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eDT has a profound and multifaceted impact on life-course trajectories, affecting employment, career development, and family planning. Structured return-to-work planning, early socioeconomic assessment, and fertility counseling should be integral to care. Beyond functional impairments, patients face enduring psychosocial burdens, including fear of progression and reduced future planning confidence, which justify survivorship care models usually reserved for malignant disease. Patient-reported outcomes proved essential to capture these dimensions, offering insights not visible through clinical endpoints. For rare, indolent tumors such as DT, care should evolve beyond tumor control to encompass long-term functionality, reproductive autonomy, and psychosocial resilience.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate: The study received ethical approval from the Technical University of Dresden (EK489112023). \u003cem\u003eClinical trial registration number:\u003c/em\u003e The study was registered at ClinicalTrials.gov (NCT06258421).\u003c/p\u003e\n\u003cp\u003eConsent for publication: Not applicable\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials:\u0026nbsp;\u003cem\u003eThe datasets generated during and analyzed during the current study are available on reasonable request.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCompeting interests:\u0026nbsp;The authors declare that they have no competing interests related to this work.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFunding:\u0026nbsp;The PROSa-DES study received a grant by the patient advocacy group SOS-desmoid e.V., Mannheim, Germany and support by the Desmoid Tumor Research Foundation (DTRF), Woodcliff Lake, NJ 07677, USA.\u003c/p\u003e\n\u003cp\u003eAuthors' contributions\u0026nbsp;\u003cem\u003e(alphabetical)\u003c/em\u003e:\u003c/p\u003e\n\u003cp\u003eChristina Baumgarten \u0026nbsp; \u0026nbsp;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;conceptualization, resources, funding acquisition\u003c/p\u003e\n\u003cp\u003eMartin Eichler\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;conceptualization, project administration, resources, data curation, formal analysis, review \u0026amp; editing, supervision\u003c/p\u003e\n\u003cp\u003eRebekka Hoffmann\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;investigation and provision of patient data, data curation\u003c/p\u003e\n\u003cp\u003ePeter Hohenberger \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;conceptualization, project administration, resources, investigation and provision of patient data, data curation, validation, review \u0026amp; editing, visualization, supervision\u003c/p\u003e\n\u003cp\u003eFranka Menge \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;investigation and provision of patient data, data curation, writing\u003c/p\u003e\n\u003cp\u003eMarkus Schuler\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Supervision, Review and Editing\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSergio A. Zapata Bonilla\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;conceptualization, writing draft, creation of the database, data curation, software, formal analysis, writing\u003c/p\u003e\n\u003cp\u003eAcknowledgements: \u0026nbsp;None beyond those described under Funding\u003c/p\u003e\n\u003cp\u003eAuthors' information (optional): not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAI Disclosure Statement:\u003c/strong\u003e Generative artificial intelligence (ChatGPT-4o, OpenAI, 2025) was used only to improve language clarity and readability. No AI tools were used for data collection, analysis, or interpretation. All AI-assisted edits were reviewed and verified by the authors to ensure accuracy and integrity.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eReitamo JJ, Hayry P, Nykyri E, Saxen E. The desmoid tumor. I. 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Eur J Cancer. 2022;162:34\u0026ndash;44.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGounder MM, Atkinson TM, Bell T, Daskalopoulou C, Griffiths P, Martindale M, et al. GOunder/Desmoid Tumor Research Foundation DEsmoid Symptom/Impact Scale (GODDESS((c))): psychometric properties and clinically meaningful thresholds as assessed in the Phase 3 DeFi randomized controlled clinical trial. Qual Life Res. 2023;32(10):2861\u0026ndash;73.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"orphanet-journal-of-rare-diseases","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ojrd","sideBox":"Learn more about [Orphanet Journal of Rare Diseases](http://ojrd.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/ojrd/default.aspx","title":"Orphanet Journal of Rare Diseases","twitterHandle":"@bmc","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"desmoid fibromatosis, employment, fertility, unmet needs, patient-reported outcomes, rare tumors, quality of life, psychosocial impact, long-term follow-up","lastPublishedDoi":"10.21203/rs.3.rs-7947255/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7947255/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eIntroduction: Desmoid Tumors (aggressive Fibromatosis; DT) are rare soft tissue tumors that typically affect young adults, predominantly women and can lead to significant long-term morbidity. While its physical burden is well characterized, less is known about its long-term psychosocial and functional impact. This study aims to explore how DT affects employment, career development, family planning, and support needs from a patient-centered perspective.\u003c/p\u003e \u003cp\u003e Methods: We analyzed data from 109 participants suffering from DT who were recruited via a tertiary cancer center and a national patient advocacy group. The cohort has a median disease history of ten years, enabling long-term perspectives. Quantitative data on employment, fertility planning, and unmet needs were collected via structured questionnaires. Qualitative input from patient commentaries complemented these findings.\u003c/p\u003e \u003cp\u003eResults: The mean age at survey was 45.7 years (SD 14.1); mean age at diagnosis was 35.8 years (SD 14.5). Nearly half of participants had an officially recognized disability status, and around 10% had exited the workforce, a substantially higher rate than in the general population. Among those employed full-time at diagnosis (n\u0026thinsp;=\u0026thinsp;49), 51.0% changed their career path, most commonly due to physical (89.9%, n\u0026thinsp;=\u0026thinsp;44) and psychological limitations (56.2%, n\u0026thinsp;=\u0026thinsp;27). Financial losses due to changes in career plans were reported by 52.2% (n\u0026thinsp;=\u0026thinsp;24). Of participants with incomplete family planning (n\u0026thinsp;=\u0026thinsp;59), 79.7% expressed at least moderate desire for children, yet only 17.0% (n\u0026thinsp;=\u0026thinsp;10) received counseling from reproductive medicine specialists. Satisfaction with counseling, when received, was high. Unmet support needs were most frequent for fear of progression (31.5%, n\u0026thinsp;=\u0026thinsp;34) and uncertainty about the future (35.8%, n\u0026thinsp;=\u0026thinsp;39). Emotional support needs declined over time (p\u0026thinsp;=\u0026thinsp;0.050), suggesting some long-term adjustment.\u003c/p\u003e \u003cp\u003eConclusion: This study provides long-term, patient-reported insights into the impact of DT on employment, family planning, and psychosocial well-being. The findings highlight persistent functional and socioeconomic consequences, alongside enduring emotional burdens such as fear of progression. These results underscore the importance of structured survivorship approaches that integrate return-to-work planning, fertility counseling, and sustained psychosocial support, extending care beyond tumor control to long-term quality of life.\u003c/p\u003e","manuscriptTitle":"Long-term impact of sporadic desmoid fibromatosis on work life, reproductive health and support needs. 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