Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study

Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study Florence Bénard, Florence Pelletier, Sandrine Huez, Frédéric Mercier, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8799346/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 4 You are reading this latest preprint version Abstract Objectives Patients with neuroendocrine tumors (NETs) encounter various challenges, including delayed diagnosis and difficulty finding high-quality NET-specific information. They also have difficulty finding relevant information about their condition. The purpose of this study was to explore the experiences of patients living with NETs. More specifically, the objectives were to document their care trajectories and explore informational needs. Methods Fifteen NET patients were approached by their surgical oncologist. Thirteen agreed to participate in semi-structured interviews alone or with their spouse, as preferred. Interviews were transcribed verbatim and the analysis was inductive, allowing theories to emerge directly from the data. In addition, all participants completed a questionnaire to collect sociodemographic and disease-related data. Results Among the patients recruited, a mean of 26.6 months separated the start of symptoms from the moment of diagnosis. On average, an additional 12.8 months elapsed before referral to a specialized center. Fully 76.5% of patients felt well informed, but only 47.1% believed the available information was reliable. Facilitating factors included their relationship with specialists, as well as having relatives working in healthcare and a multidisciplinary team, including nurse navigators. Significant challenges included discordances between the different sources of information, as well as having a limited understanding of medical terms. Conclusions and implications for practice There is great inequity in access to information and a lack of validated information available to patients and their relatives. Moreover, rapid referral to NET-specialized centers with access to a multidisciplinary team could ease patients’ care trajectory and facilitate the provision of information. Practice implications Healthcare professionals caring for NET patients should systematically assess informational needs at key points in the trajectory, provide repeated plain-language explanations, and proactively direct patients to curated NET-specific resources. Nurse navigators, multidisciplinary teams and trained patient partners may help bridge information gaps, support shared decision-making and facilitate self-management. Neuroendocrine tumor cancer information needs challenges Introduction Neuroendocrine tumors (NETs) represent a heterogeneous group of rare neoplasms originating from neuroendocrine cells, which are widely distributed in the body and involved in the regulation of hormonal and nervous system functions [ 1 ]. These tumors can occur in various organs, most commonly the gastrointestinal tract, pancreas, and lungs, and are notable for their capacity to produce and secrete hormones, often resulting in distinct clinical syndromes [ 2 ]. While NETs have historically been considered indolent, their biological behavior spans a broad spectrum, from slow-growing to highly aggressive forms, necessitating careful classification and management [ 3 ]. In North America, NETs are uncommon, with an incidence of 5.45 patients per 100,000 [ 4 ]. Recent decades have seen significant progress in the diagnosis and treatment of NETs, driven by advances in imaging techniques, molecular profiling, and targeted therapies [ 5 ]. Despite these improvements, challenges persist, particularly in early detection, accurate pathological classification, and the development of personalized treatment and educational strategies [ 6 , 7 ]. More recent longitudinal and narrative reviews also highlight the persistent impact of treatment on health-related quality of life (HRQoL) among neuroendocrine neoplasm survivors, underscoring the need to systematically integrate patient-reported outcomes and supportive care into routine NET management [ 8 ]. The rarity and heterogeneity of NETs create challenges for patients, such as delayed diagnosis and the lack of a standardized care pathway [ 9 , 10 ]. Moreover, the paucity of medical providers’ awareness of NETs [ 10 ] can lead to insufficient information provided at diagnosis and a lack of referral to expert centers [ 9 , 11 ]. These diagnostic delays and non-linear care pathways are increasingly recognized as key contributors to poorer outcomes and higher psychosocial burden among patients with rare cancers, including NETs, reinforcing the importance of timely access to specialized, multidisciplinary care and high-quality information from the outset of the trajectory. However, patients diagnosed with NETs often face significant challenges in accessing accurate, comprehensive, and understandable information about their condition [ 12 ](ref). Due to the rarity and heterogeneity of NETs, many patients report difficulties in obtaining timely and relevant resources, both at the time of diagnosis and throughout their treatment journey. Information is frequently scattered across specialized medical literature, patient advocacy websites, and healthcare provider portals, complicating access for non-specialists. International expert societies and patient organizations have repeatedly drawn attention to these systemic barriers, highlighting inequities in access to NET-specific expertise and educational resources across regions and healthcare systems. The European Neuroendocrine Tumor Society (ENETS) has highlighted these systemic barriers, particularly the disparities in access to high-quality care and information across Europe, as discussed at their 2024 annual conference and published in the Journal of Neuroendocrinology [ 13 ] (ENETS, 2024–2025) enets.org. NET patients report that they are not sufficiently informed, do not know where to find information, and have difficulty finding quality information. Therefore, most of them turn to the Internet [ 11 , 12 ]. Similar concerns about the adequacy and timing of information have been reported in patients with gastroenteropancreatic NETs treated with somatostatin analogues [ 14 ]. Emerging patient-centred tools such as NET VITALS and related self-assessment instruments have been developed to help patients organize key diagnostic and treatment information and structure discussions with their care team, yet recent implementation work shows that, despite these efforts, important knowledge gaps about tumour characteristics and treatments persist for many NET patients [ 15 , 16 ]. However, the information available online is of low quality [ 17 ], leaving patients with the complicated task of identifying relevant sources [ 11 ]. With the incidence of NETs rising quickly [ 1 , 4 , 10 ], it is crucial to clarify patients' informational needs and rectify the situation in order to provide optimal supportive care to these patients. In this context, disease-specific digital tools, such as personal health record software tailored to NET patients, represent promising approaches to structuring information, supporting self-management and improving communication with clinicians [ 18 ]. Additionally, the complexity of NETs (encompassing diverse primary sites, hormonal syndromes, and treatment options) can overwhelm patients and their families, especially when explanations from healthcare professionals are limited by time constraints or lack of expertise in this specific field. Language barriers, varying health literacy levels, and the emotional impact of a rare cancer diagnosis further complicate access to reliable information. Recent qualitative and mixed-methods studies with NET patients and caregivers emphasize that information must be tailored not only to tumour biology and the treatment phase, but also to patients’ evolving emotional state, preferences for detail, and preferred formats (e.g., written material, digital tools, peer-led resources) in order to be truly useful and actionable [ 9 , 12 , 19 – 21 ]. For cancer patients, it is essential to provide adequate information on their disease in order to foster their participation in decision-making while enhancing their ability to cope with a health-threatening diagnosis [ 22 ]. However, cancer patients’ informational needs frequently go unmet [ 23 ], which can lead to anxiety [ 24 , 25 ] and decreased health-related quality of life [ 25 ]. This is especially true for patients living with rare cancers, as this specific population reports up to 95% of their informational needs as unmet [ 26 ]. These patients experience informational challenges, including lack of disease-specific information and limited access to clinical expertise and patient support groups [ 26 ] More recently, systematic reviews of the survivors of rare cancers further confirm that people living with rare cancers report higher unmet information needs and lower satisfaction with information than survivors of more common cancers, and that very few of the evaluated interventions explicitly target the provison of information on rare tumour types [ 27 ] Together with the emerging NET-specific literature, these findings highlight the need to better understand and address the specific informational needs of patients with NETs across the care continuum to inform the development of tailored, patient-centered resources and interventions. Therefore, this paper aims to: (1) document NET patients’ care trajectory and detail their challenges when trying to obtain information, and (2) identify patient-based solutions. Methods Study design From April to June 2023, we conducted a mixed method study in a single, academic healthcare center in Montreal, Canada that treats approximately 120 new cases of NET each year. Participants’ recruitment Eligibility criteria included: aged 18 years or older, speaking English or French, and having a small bowel or pancreatic NET for which they received care at the Surgical Oncology department. Potential participants were identified through purposeful sampling conducted by their surgical oncologist, who contacted them with general information about the study. If interested, they were called by a research team member who provided more details. Fifteen patients were approached, of which fourteen consented to participate in the study. The fifteenth patient was hospitalized during recruitment, and therefore was not interested in participating. One patient who had given consent was not available for the interview because of personal circumstances and was thus excluded. Patients could participate alone or be accompanied by a spouse. Data collection and analysis Data were collected from two different sources. An online questionnaire was sent to patients to collect information on sociodemographic characteristics, diagnosis and the specificity of their trajectory (see Appendix 1). Descriptive statistics were compiled from the questionnaires. In addition, the patients were invited to participate in semi-structured interviews aimed at detailing their care trajectory, information sources, informational needs, challenges faced, as well as ideas on improving information access. The interview guide was co-constructed with a patient who was part of the research team. Questions were tested with two other patients who provided feedback, leading to additional modifications. The final version of the guide was reviewed and approved by the entire team (see Appendix 2). Patients were interviewed either by phone, by videoconference or in person, depending on their preference, by one researcher (FB) who was not known to the participants. The interviews were recorded, transcribed verbatim and imported into QDA Miner 6.0.2 software for analysis ("QDA Miner 6.0.2" 2022) [ 28 ]. The coding process was inductive, following the principles of grounded theory, and was carried out by two authors (FB, MPP) [ 29 ]. A first thematic coding grid was built following analysis of two transcripts. Once both authors had agreed on an initial coding tree, two additional transcripts were coded and reviewed in a similar manner. Consensus for the coding tree was then reached, and all the remaining transcripts were coded accordingly. Theoretical saturation was reached after the tenth interview, meaning that no new information or themes emerged from the data collection at this point. This study followed Consolidated criteria for reporting qualitative research (COREQ) guidelines, which are designed to enhance the transparency and rigor of reporting in qualitative research studies. Ethical issues and approval The study was approved by CHUM’s Research Center Ethics Board (project number 22.016; 2023–10600). All participants received a study information sheet and provided written informed consent. Only researchers involved in the data analysis had access to the data. Results Patients’ characteristics Thirteen patients and four spouses participated, with interviews ranging in length from 40 to 108 minutes (mean: 64.5). Approximately half the patients were men (53.8%). Most patients were aged between 55 and 74 years (61.6%). Six patients had a university degree (46.2%) and all the patients believed they had enough money to at least meet their basic needs. The primary tumor site was the small bowel in nine patients (69.2%) and the pancreas in four patients (30.8%). Most patients had metastatic disease (84.6%). The sociodemographic characteristics and disease information are detailed in Tables 1 and 2 , respectively. Table 1 Patients’ sociodemographic characteristics Characteristic Participants (n = 13) Female sex — no. (%) 6 (46.2) Age distribution — no. (%) 24 years or younger 1 (7.7) 25 to 34 years 0 (0.0) 35 to 44 years 2 (15.4) 45 to 54 years 0 (0.0) 55 to 64 years 4 (30.8) 65 to 74 years 4 (30.8) 75 years or older 2 (15.4) Highest level of education completed — no. (%) Partial high school education 1 (7.7) High school diploma 2 (15.4) Diploma or certificate from a college, technical school, or professional training school 4 (30.8) University degree 6 (46.2) Financial situation — no. (%) Sufficient income to meet basic needs 8 (61.5) Financially comfortable 5 (38.5) Table 2 Patients’ diagnosis and trajectory of care Characteristic Patients (n = 13) Primary tumor localization — no. (%) Small bowel 9 (69.2) Pancreas 4 (30.8) Context for the diagnosis — no. (%) Presence of symptoms 11 (84.6) Fortuitous discovery 2 (15.4) Number of years since diagnosis — no. (%) 1–2 years 5 (38.5) 3–5 years 5 (38.5) > 5 years 3 (23.1) Recurrent disease — no. (%) 3 (23.1) Metastatic disease — no. (%) 11 (84.6) Number of treatment modalities received — no. (%) 0–1 3 (23.1) 2–3 7 (53.8) 4–5 3 (23.1) Care trajectory Characteristics The care trajectory varied widely among the participants. On average, 26.6 months separated symptom onset from the moment of diagnosis (range: 4 to 96). Symptomatic patients consulted a mean of 3.7 different doctors before receiving a NET diagnosis (range: 1 to 7), and 54.5% experienced diagnostic wandering. Delays were common between diagnosis and referral to a center specializing in NET, with a mean of 12.8 months for patients with a first occurrence of NET (range: 0 to 60). One patient with recurrent disease also experienced a delay (18 months) between the time of recurrence and a referral. Patients met an average of 1.5 additional doctors before referral (range: 0 to 6), and all but one participant were referred by another medical specialist. Challenges The main challenges experienced by a vast majority of the patients were organizational, including delays, limited access to certain diagnosis modalities and administrative issues. Besides delays in diagnosis and referral, patients also described delays in obtaining exams or treatments. Participants commented on how the latter was amplified by the COVID-19 situation. Moreover, the limited accessibility of certain diagnostic tests further enhanced the problem. “ The doctor sent me to get a scan at [hospital C], because the waiting time at [hospital A] was 6 months and [hospital B] was way too far for me. So, I had this scan in June 2020, but, with COVID and all that, it was longer, so I only got my colonoscopy in January 2021 .” (Patient 02) Various administrative issues were also described, which, in some cases, also delayed care, but most importantly created burdensome situations for patients. This includes confusion related to frequent turnover of nurse navigators and difficulty getting transferred to a hospital specializing in NETs. “ They told me that they could not treat me there and that they needed to transfer me to a hospital specializing in NET. But it took a month, because the paperwork was not getting done. [...] I had to force someone’s hand on a Saturday afternoon to get transferred. [...] It wasn’t easy .” (Patient 12) Other frequent themes included uncertainty and worry, especially with regard to an unknown diagnosis, missing information, and waiting for exam results. Many patients also expressed loneliness related to the rarity of the disease. They reported feeling misunderstood and struggling with finding NET-specific resources. “ There were conferences on hormonal therapy, but always for breast cancer, nothing for NET. [...] There isn’t anybody with NET on cancer blogs. [...] I’m alone in the world. [...] If you’re an alcoholic, you can share in AA. But with NET, you can’t share with anyone .” (Patient 05) Information Informational needs Most patients and their spouses felt well informed and described the information received as useful. This was mainly attributed to the information provided directly by their NET specialist, as well as the rest of the multidisciplinary team. “ I could truly ask any question of [my NET specialist]. When I wasn’t feeling well during treatments… There was always somebody there, someone I could ask: “Is this normal?” And… [my NET specialist] was very present .” (Patient 14) However, only less than half of participants believed the information they received was reliable. They described having difficulty determining whether the information on the Internet was accurate and how it applied to their situation. Some commented on the lack of NET-specific knowledge among some of the doctors they met, which led to being provided with incomplete or inexact information. These challenges caused experience discordances in the information received, inducing confusion and anxiety. “ When I look on the Internet [...], sometimes it seems that it isn’t exactly what the doctors tell us. [...] At the very beginning, when I met with my family doctor for my annual appointment, she told me: “It’s a cancer, but it can be removed by colonoscopy.” [...] But in the end, it wasn’t that at all. So that’s why I decided to rely only on [my NET specialist] and follow only his advice .” (Patient 02) All the patients identified their diagnosis and the introduction of new treatments as key moments when they actively searched for additional information. Other triggers included hospitalizations, the postoperative period, bothersome symptoms, as well as personal circumstances, such as travel or fertility considerations. Information that was challenging to obtain included details on the definition of NETs, risk factors, life expectancy, and associated symptoms. Participants also desired more information on treatment, side effects and post-operative recovery. Access to information All the patients identified the Internet and their specialists as their principal sources, although they relied mainly on the latter to obtain information specific to their situation. Seven participants also identified fellow patients and members of the multidisciplinary team as useful resources. Other popular sources of information included relatives and documents provided by the hospital. “ Our son always came with us. It was reassuring because when [the healthcare provider] explained things, he would do some research afterwards and explain it in terms that we would understand. It was helpful because we had a better idea of where we were going, and we could prepare questions for the next appointment .” (Spouse 03) “ With all the documents that I received from healthcare providers [on a specific treatment], it seemed complete. I didn’t feel like I needed anything more than that .” (Patient 08) The patients’ relationship with their NET specialists was also identified. The accessibility and trustworthiness of NET specialists were common themes and had a significant positive impact on patients, as specialists could demystify unclear areas and answer questions in a timely manner. “ Being able to frequently meet with my medical team was reassuring. [...] My specialists knew my file, they knew how to talk to me and knew what my potential questions were, and they were able to help me through it .” (Patient 01) Some patients mentioned having a relative with healthcare-related knowledge, which helped them obtain quality information and better understand their disease and treatments. Those relatives participated in appointments, helped explain the information or guided patients in online research. Identified facilitators also included a low symptom-associated burden, efficient medical care and access to a multidisciplinary team, including nurse navigators. Challenges to information access The paucity of high-quality, accessibly written information online often limited patients’ ability to autonomously find information. They depended on their NET specialists for answers, which could be limiting. Moreover, NETs’ complexity made it even more difficult for patients to understand their disease, despite repeated explanations. This was amplified by information overload and limited retention, especially with the emotional context associated with cancer-related discussions. “ When they were explaining what NETs were to me, I made them repeat it twice, you know. [...] And at some point, I thought I had understood my disease, but then I discussed something else with [my NET specialist], which made me realize I didn’t understand my disease. ” (Patient 13) “ Even if I tried to look for information, I have so little understanding that… I just relied on the doctors .” (Patient 04) However, some participants mentioned they preferred limiting the amount of information they read on the Internet or received during appointments, since it sometimes increased their anxiety instead of being helpful. “ I want to know enough to be prepared for what will happen next, to not be facing the unknown. But at the same time, I don’t want to know too much, because I’m afraid of discovering something I’d rather not know .” (Spouse 04) Another frequent issue was discordances between the information provided by Internet searches, their previous doctors and their NET specialists. Patients also experienced discordances between the professional opinions of different doctors in the same tertiary institution, which was particularly difficult as it created additional uncertainty. “ There is a surgeon telling me he wants to operate, another one tells me it isn’t a good idea, one oncologist telling me to undergo [a specific treatment], another telling me no… It’s very hard to make up our mind in those situations… And am I at the right place? What is the best treatment? Who has the answer? ” (Patient 09) Recommendations The first suggestion is to provide NET patients with universal access to nurse navigators. They provide information between medical appointments and liaise between the patient and the hospital. The second suggestion is to hold multidisciplinary meetings before a patient’s initial visit. Patients noted that such meetings were sometimes held after they had met each specialist separately, which could lead to discordances between the opinions expressed at those appointments, causing anxiety. “ It made me panic a bit. I saw that one doctor favored one thing, the other favored something else… We knew it would be discussed by the tumor board, but I think I would rather have gotten the final decision instead of individual opinions. I know they wanted to be honest, but it just made me feel insecure .” (Patient 10) The third suggestion is to develop NET-specific documents for distribution by the hospital, which currently do not exist. According to patients, such documents should be given at the moment of diagnosis and should include the definition of NETs, risk factors, symptoms, potential treatments and side effects. Some participants also expressed interest in a document on post-surgery recovery. However, such documents are generic. Some of the information might not apply to all patients. A patient suggested creating interactive tools that would provide targeted information after entering some disease-related data. “ You read something and you tell yourself: ‘That isn’t my case.’ […] There isn’t a tool where you can complete a questionnaire and then get guidance, or, you know, something more targeted .” (Patient 01) Finally, the NET patients mentioned that they are well aware that every situation is different, but they would like to be able to talk to patients who have been through the same thing as them, to feel less alone in adversity and to talk about various strategies for facing the disease, the diagnosis, and the treatment. This need was also emphasized by their relatives. “ I don't know if there is such a thing, but I would have loved to have met someone who has been through what I've been through, so I wouldn't feel so abandoned. My mother would’ve liked to meet someone like that, too. ” (Patient 11) Discussion This study, conducted with NET patients followed at the Surgical Oncology department of an academic healthcare center in Montreal, Canada highlights the ongoing burden of delays to receive a diagnosis and the complexity in accessing relevant information for patients. Complex trajectories due to professionals' lack of knowledge of these pathologies Our study shows consistently long waiting times before diagnosis. However, an international survey published in 2016 documented a patient-reported time of 52 months between the onset of symptoms and diagnosis [ 10 ], nearly twice the time reported in our study (26.6 months). That survey’s participants also met an average of 6.2 doctors before diagnosis [ 10 ], compared to 3.7 in our cohort. The difference may be due to our small sample size compared with that of the international study and also of the paucity of patients of low socioeconomic status in our study [ 30 ]. This can also be explained by different diagnostic modalities [ 4 ]. Indeed, promoting efficient referrals is crucial to providing high-quality multidisciplinary care and better prescription of the recommended treatments, with potentially improved survival rates [ 5 , 31 ]. The main cause of these delays is the diagnostic wandering experienced by patients before they are able to access a specialist. It seems that front-line professionals and some specialists not only know little about the pathology, but also about where to refer patients. This is supported by the literature [ 9 , 11 ]. Hard-to-find information resources for patients The information online remains particularly problematic, with a predominance of low-quality information available through the common search engines [ 17 ]. The limited readability of reliable websites highlights a definitive need to develop high-quality resources accessible to patients of low health literacy, including informational websites, chatbots and applications [ 27 ]. This study shows that most patients relied on their NET specialist to provide and explain the information. Fostering the patient-physician relationship allows the delivery of personalized, targeted information, especially since patients might seek different types and amounts of information [ 32 ]. Nonetheless, physicians’ availability is restricted by time constraints [ 11 ], and patients’ retention of communicated information can be limited [ 32 ]. This calls for further attention to the importance of having multiple, reliable resources, including hospital-provided documents [ 11 ], high-quality online information [ 17 ], as well as nurse navigators and patient advisors [ 32 , 33 ]. Avenues of improvement for patients and professionals To improve the trajectory, patients mention first and foremost the need for better training for front-line teams in how to diagnose these clinical situations, as well as better knowledge of the interdisciplinary teams specializing in these pathologies, as also mentioned in another study [ 11 ]. It would also be feasible to provide rapid referral to multidisciplinary centers and dedicated nurse navigators, and to formulate a coordinated plan and decrease discordances [ 31 ]. In terms of access to relevant information that is not dependent on specialists in the field, there is a growing interest in chatbots and applications, as they can provide efficient and personalized information rather than general data on the disease, fostering patients’ empowerment and autonomy. Such tools could be created for NET patients using the results of this study, which is the first to our knowledge to identify the information that should be included in such a document from a patient’s perspective. NET patients have also proposed the creation of NET-specific documents developed by experts, including not only for healthcare professionals but also for the patients who have to live with NET. Another avenue proposed in the literature is the implementation of NET-dedicated peer support programs [ 34 , 35 ], which could alleviate the feelings of loneliness described in our study. Such programs have been shown to provide informational [ 32 , 36 ] and emotional assistance to cancer patients [ 36 , 37 ]. More specifically, recent literature has explored the role played by trained patient advisors in providing psychological support and experiential knowledge to help patients navigate the healthcare system [ 33 , 38 ]. Practice implications Our findings suggest several concrete implications for NET care. First, multidisciplinary teams should routinely screen for unmet informational needs at key transition points (e.g., diagnosis, treatment changes, disease progression) and schedule time for repeated explanations in plain language. Second, a clearly identified contact person, such as a nurse navigator, should be available to help patients interpret information, prepare questions and coordinate appointments. Third, teams should co-develop curated, multilingual NET-specific resources (websites, leaflets, videos, patient stories) with patients and caregivers, and make these resources systematically available during consultations. Integrating trained patient partners or peer supporters into NET clinics may reduce uncertainty, validate emotions and provide experiential knowledge that complements clinicians’ expertise. Finally, designing and testing digital tools tailored to NETs (e.g., personal health records, symptom and question trackers) could support self-management and improve communication between patients and their healthcare teams. Implementing these strategies may help reduce informational inequities, alleviate anxiety and improve quality of life for people living with NETs. Strengths and limitations The main limitation of our study is its external validity. Our cohort only included patients with small bowel and pancreatic NET, the majority of which had metastatic disease, which might have a different care trajectory and different specific needs from other NET patients. Moreover, no participant was in a precarious financial situation, 38.5% of participants had a relative working in healthcare, and 46.2% held a university degree, compared to 28.5% in the general Canadian population (Government of Canada). This could increase our participants’ health literacy, leading to an underestimation of informational needs. Our study is also at risk of recall bias, since findings are based exclusively on patients’ responses. Conclusion Although there has been progress, NET patients still experience significant diagnosis wandering and delays before being referred to a specialized center. Rapid referral is key to providing patients with varied resources to meet their informational needs, including medical specialists, hospital-provided documents, nurse navigators, and NET-dedicated peer support programs. There is a clear need to develop high-quality NET-specific informational sources that will be easily accessible online and easy to understand. Interactive and personalizable options such as chatbots and applications should also be considered. In this context, the research team is currently working on developing a digital platform that will enable people affected by neuroendocrine tumors to follow a personalized learning path in which all relevant and validated information is recorded and accessible, based on to the needs of patients and their loved ones [ 39 ]. Declarations Ethical approval The study protocol was approved by the Research Ethics Board of the Centre hospitalier de l’Université de Montréal (CHUM). All participants provided informed consent prior to data collection. Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. Funding This study was supported by CHUM Research Chair on the Evaluation of State-of-the-Art Technology and Methods. The funder had no role in the study design, data collection, analysis, interpretation of the data, or writing of the manuscript. Author contributions FB and FP contributed to the study conception and design, data collection, data analysis and drafting of the manuscript. SH, FM and MPP contributed to the interpretation of the findings and critically revised the manuscript for important intellectual content. All authors approved the final version of the manuscript and agreed to be accountable for all aspects of the work. Acknowledgments: We sincerely thank all patients and accompanying patients who took part in the project for their steadfast commitment. This study was supported by the CHUM Research Chair on the Evaluation of State-of-the-Art Technology and Methods. We gratefully acknowledge Jim Kroening for his linguistic revision of this manuscript. Data availability The datasets generated and analysed during the current study are not publicly available due to privacy and confidentiality considerations, but are available from the corresponding author on reasonable request. References Dasari A, Shen C, Halperin D, Zhao B, Zhou S, Xu Y, Shih T, Yao JC. Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017;3:1335–42. 10.1001/jamaoncol.2017.0589 . Klimstra DS, Modlin IR, Coppola D, Lloyd RV, Suster S. The Pathologic Classification of Neuroendocrine Tumors: A Review of Nomenclature, Grading, and Staging Systems. Pancreas. 2010;39:707–12. 10.1097/MPA.0b013e3181ec124e . Ahmed M. Gastrointestinal Neuroendocrine Tumors in 2020. World J Gastrointest Oncol. 2020;12:791–807. 10.4251/wjgo.v12.i8.791 . Hallet J, Law CHL, Cukier M, Saskin R, Liu N, Singh S. Exploring the Rising Incidence of Neuroendocrine Tumors: A Population-based Analysis of Epidemiology, Metastatic Presentation, and Outcomes. Cancer. 2015;121:589–97. 10.1002/cncr.29099 . Strosberg J, Gardner N, Kvols L. Survival and Prognostic Factor Analysis of 146 Metastatic Neuroendocrine Tumors of the Mid-Gut. Neuroendocrinology. 2009;89:471–6. 10.1159/000197899 . Fazio N, Buzzoni R, Delle Fave G, Tesselaar ME, Wolin E, Van Cutsem E, Tomassetti P, Strosberg J, Voi M, Bubuteishvili-Pacaud L, et al. Everolimus in Advanced, Progressive, Well‐differentiated, Non‐functional Neuroendocrine Tumors: RADIANT ‐4 Lung Subgroup Analysis. Cancer Sci. 2018;109:174–81. 10.1111/cas.13427 . Naraev BG, Mailman J, Halfdanarson TR, Soares HP, Mittra ES, Hallet J. Consideration of Quality of Life in the Treatment Decision-Making for Patients with Advanced Gastroenteropancreatic Neuroendocrine Tumors. Expert Rev Anticancer Ther. 2023;23:601–15. 10.1080/14737140.2023.2207829 . Modica R, Benevento E, La Salvia A, Mazzilli R, Pandozzi C, Pecora G, Barrea L, Colao A, Faggiano A. __ Impact of Treatment on Quality of Life in Neuroendocrine Neoplasm Survivors. Endocr Relat Cancer. 2025;32:e240303. 10.1530/ERC-24-0303 . Feinberg Y, Law C, Singh S, Wright FC. Patient Experiences of Having a Neuroendocrine Tumour: A Qualitative Study. Eur J Oncol Nurs. 2013;17:541–5. 10.1016/j.ejon.2013.02.003 . Singh S, Granberg D, Wolin E, Warner R, Sissons M, Kolarova T, Goldstein G, Pavel M, Öberg K, Leyden J. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2017;3:43–53. 10.1200/JGO.2015.002980 . Leyden S, Kolarova T, Bouvier C, Caplin M, Conroy S, Davies P, Dureja S, Falconi M, Ferolla P, Fisher G, et al. Unmet Needs in the International Neuroendocrine Tumor (NET) Community: Assessment of Major Gaps from the Perspective of Patients, Patient Advocates and NET Health Care Professionals. Int J Cancer. 2020;146:1316–23. 10.1002/ijc.32678 . Guccione L, Gough K, Drosdowsky A, Price T, Pavlakis N, Wyld D, Ransom D, Michael M, Schofield P. The Unmet Information Needs, Quality of Life, and Care Experiences of Patients with Neuroendocrine Tumours (NETs) at Follow-up: 6 Months from Diagnosis. Support Care Cancer Off J Multinatl Assoc Support Care Cancer. 2023;31:577. 10.1007/s00520-023-08034-5 . European Neuroendocrine Journal of Neuroendocrinology. Barriers to Accessing High-Quality Care for Neuroendocrine Neoplasms (NENs) across Europe. ; 2024. Hautefeuille V, Walter T, Do Cao C, Coriat R, Dominguez S, Mineur L, Cadiot G, Terrebonne E, Sobhani I, Gueguen D et al. OPERA: Perception of Information in Patients with Gastroenteropancreatic Neuroendocrine Tumors on Lanreotide Autogel. Eur. J. Endocrinol. 2023, 189 , 281–289. 10.1093/ejendo/lvad094 Li D, Imbesi GJ, Yen L, Kim H, Sun C-L, Crook CJ, Ballena R, Zhang Y-H, Allen R, Sedrak M, et al. Feasibility and Satisfaction of Using NET VITALS Self-Assessment Tool Among Patients With Neuroendocrine Tumors. Pancreas. 2022;51:319–24. 10.1097/MPA.0000000000002034 . Crook CJ, Yen L, Ta K, Karimi M, Nguyen D, Lee RT, Li D. Proposed Implementation of a Patient-Centered Self-Assessment Tool for Patients with Neuroendocrine Tumors among Academic and Community Practice Sites: The City of Hope Model. J Clin Med. 2023;12:1229. 10.3390/jcm12031229 . Sohail S, Zuk V, Halfdanarson T, Chan D, Pattison S, Vasdev R, Law C, Hallet J. The Quality of Online Information for an Uncommon Malignancy—Neuroendocrine Tumours (NETs). Curr Oncol. 2021;28:842–6. 10.3390/curroncol28010082 . Hourcade JP, O’Rorke M, Chrischilles E, Rudzianski NJ, Gryzlak B, Peterman K, Ortman C, Wolstencroft S, Bean M, Gellerman E, et al. Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach. JMIR Hum Factors. 2025;12:e68788. 10.2196/68788 . de Hosson LD, Bouma G, Stelwagen J, van Essen H, de Bock GH, de Groot DJA, de Vries EGE, Walenkamp AME. Web-Based Personalised Information and Support for Patients with a Neuroendocrine Tumour: Randomised Controlled Trial. Orphanet J Rare Dis. 2019;14. 10.1186/s13023-019-1035-3 . Olsson F, Jangland E, Edfeldt K. Experiences and Fundamental Care Needs in Patients With Small Intestinal Neuroendocrine Tumours-An Interview Study in a Surgical Context. J Adv Nurs. 2025;81:2061–71. 10.1111/jan.16441 . Chua GP, Ng QS, Tan HK, Ong WS. Caregivers of Cancer Patients: What Are Their Information-Seeking Behaviours and Resource Preferences? Ecancermedicalscience 2020, 14 , 1068. 10.3332/ecancer.2020.1068 Lambert SD, Loiselle CG. Health Information—Seeking Behavior. Qual Health Res. 2007;17:1006–19. 10.1177/1049732307305199 . Tariman JD, Doorenbos A, Schepp KG, Singhal S, Berry DL. Information Needs Priorities in Patients Diagnosed With Cancer: A Systematic Review. J. Adv. Pract. Oncol. 2014, 2014 , 115–122. Ferrari M, Ripamonti CI, Hulbert-Williams NJ, Miccinesi G. Relationships among Unmet Needs, Depression, and Anxiety in Non–Advanced Cancer Patients. Tumori J. 2019;105:144–50. 10.1177/0300891618765546 . Husson O, Mols F, Van De Poll-Franse LV, Emmanuelle Jouet. Luigi Gino Flora, Olivier Las Vergnas. Construction et Reconnaissance Des Savoirs Expérientiels Des Patients. Pratiques de Formation/Analyses: Revue Internationale de Sciences Hu Maines et Sociales, 2010, 2010 (58–59), Pp.Olivier_lv. ࿽hal-00645113࿽. Ann. Oncol. 2011, 22 , 761–772. 10.1093/annonc/mdq413 Heus E, Zwan JM, Husson O, Frissen A, Herpen CML, Merkx MAW, Duijts SFA. Unmet Supportive Care Needs of Patients with Rare Cancer: A Systematic Review. Eur J Cancer Care (Engl). 2021;30. 10.1111/ecc.13502 . Farrugia T, Duijts SFA, Wilson C, Hemming L, Cockburn C, Spelten E. Addressing Cancer Survivors’ Information Needs and Satisfaction: A Systematic Review of Potential Intervention Components for Survivors with a Rare Cancer Type. Orphanet J Rare Dis. 2024;19:387. 10.1186/s13023-024-03403-7 . Miner QDA. 6.0.2. In. Provalis Research; 2022. Charmaz K. Constructing Grounded Theory ; Introducing qualitative methods; 2. ed.; SAGE: Los Angeles, Calif., 2014; ISBN 978-0-85702-914-0. Hallet J, Coburn NG, Singh S, Beyfuss K, Koujanian S, Liu N, Law CHL. Access to Care and Outcomes for Neuroendocrine Tumours: Does Socioeconomic Status Matter? Curr Oncol. 2018;25:356–64. 10.3747/co.35.3930 . Singh S, Law CM. Reference Centers: The Care of Neuroendocrine Tumors. J Oncol Pract. 2010;6:e11–6. 10.1200/JOP.2010.000098 . Skalla KA, Bakitas M, Furstenberg CT, Ahles T, Henderson JV. Patients’ Need for Information About Cancer Therapy. Oncol Nurs Forum. 2004;31:313–9. 10.1188/04.ONF.313-319 . Pomey MP, De Guise M, Desforges M, Bouchard K, Vialaron C, Normandin L, Iliescu-Nelea M, Fortin I, Ganache I, Régis C, et al. The Patient Advisor, an Organizational Resource as a Lever for an Enhanced Oncology Patient Experience (PAROLE-Onco): A Longitudinal Multiple Case Study Protocol. BMC Health Serv Res. 2021;21(10). 10.1186/s12913-020-06009-4 . Hemming L, Duijts SFA, Zomerdijk N, Cockburn C, Yuen E, Hardman R, Van Vuuren J, Farrugia T, Wilson C, Spelten E. A Systematic Review of Peer Support Interventions to Improve Psychosocial Functioning among Cancer Survivors: Can Findings Be Translated to Survivors with a Rare Cancer Living Rurally? Orphanet J Rare Dis. 2024;19:473. 10.1186/s13023-024-03477-3 . Kiemen A, Czornik M, Weis J. How Effective Is Peer-to-Peer Support in Cancer Patients and Survivors? A Systematic Review. J Cancer Res Clin Oncol. 2023;149:9461–85. 10.1007/s00432-023-04753-8 . Campbell HS, Phaneuf MR, Deane K. Cancer Peer Support Programs—Do They Work? Patient Educ Couns. 2004;55:3–15. 10.1016/j.pec.2003.10.001 . Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic Review of Peer-Support Programs for People with Cancer. Patient Educ Couns. 2008;70:315–37. 10.1016/j.pec.2007.11.016 . Jouet E et al. Construction et Reconnaissance Des Savoirs Expérientiels Des Patients. Pratiques de Formation/Analyses: Revue Internationale de Sciences Humaines et Sociales, 2010, 2010 (58–59), Pp.Olivier_lv. ⟨hal-00645113⟩. . Jackson M, Clovin T, Montiel C, Bogdanova E, Côté C, Descoteaux A, Wong C, Dumez V, Pomey M-P. Adopting a Learning Pathway Approach to Patient Partnership in Telehealth: A Proof of Concept. PEC Innov. 2023;3:100223. 10.1016/j.pecinn.2023.100223 . Supplementary Files Appendixfile1.docx Appendixfile2.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers invited by journal 27 Feb, 2026 Editor invited by journal 09 Feb, 2026 Editor assigned by journal 06 Feb, 2026 First submitted to journal 05 Feb, 2026 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. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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-8799346","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":598168237,"identity":"2919501f-449b-4465-9ccb-27ce183a153a","order_by":0,"name":"Florence Bénard","email":"","orcid":"","institution":"CHUM: Centre Hospitalier de L'Universite de Montreal","correspondingAuthor":false,"prefix":"","firstName":"Florence","middleName":"","lastName":"Bénard","suffix":""},{"id":598168238,"identity":"4411695c-9d96-4a0a-bcde-a45b49618494","order_by":1,"name":"Florence Pelletier","email":"","orcid":"","institution":"CHUM: Centre Hospitalier de L'Universite de Montreal","correspondingAuthor":false,"prefix":"","firstName":"Florence","middleName":"","lastName":"Pelletier","suffix":""},{"id":598168239,"identity":"e95e401e-7236-4f8a-8b04-307d02f0aa8f","order_by":2,"name":"Sandrine Huez","email":"","orcid":"","institution":"CHUM: Centre Hospitalier de L'Universite de Montreal","correspondingAuthor":false,"prefix":"","firstName":"Sandrine","middleName":"","lastName":"Huez","suffix":""},{"id":598168240,"identity":"60515521-4f6f-40d7-bfb2-7d73b7881b41","order_by":3,"name":"Frédéric Mercier","email":"","orcid":"","institution":"CHUM: Centre Hospitalier de L'Universite de Montreal","correspondingAuthor":false,"prefix":"","firstName":"Frédéric","middleName":"","lastName":"Mercier","suffix":""},{"id":598168241,"identity":"57ee92f0-93bd-47e7-a623-5a1e7e046e9a","order_by":4,"name":"Marie-Pascale Pomey","email":"data:image/png;base64,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","orcid":"https://orcid.org/0000-0001-5180-8139","institution":"CHUM Research Centre: Centre de Recherche du Centre Hospitalier de l'Universite de Montreal","correspondingAuthor":true,"prefix":"","firstName":"Marie-Pascale","middleName":"","lastName":"Pomey","suffix":""}],"badges":[],"createdAt":"2026-02-05 16:34:54","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8799346/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8799346/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":104835342,"identity":"ab75175e-c799-4ad2-90f2-6eae550a22d3","added_by":"auto","created_at":"2026-03-17 17:43:55","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":807862,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8799346/v1/4710d6e0-ece6-4d73-ae2b-c5a9f9f90254.pdf"},{"id":104779412,"identity":"94d99471-a720-41b2-9caa-b24dd43c4390","added_by":"auto","created_at":"2026-03-17 07:39:56","extension":"docx","order_by":7,"title":"","display":"","copyAsset":false,"role":"supplement","size":20881,"visible":true,"origin":"","legend":"","description":"","filename":"Appendixfile1.docx","url":"https://assets-eu.researchsquare.com/files/rs-8799346/v1/43dc9603702e066a1b9bf5fe.docx"},{"id":103937547,"identity":"500167ec-0807-49fe-b639-41171ebdb5d7","added_by":"auto","created_at":"2026-03-04 18:14:20","extension":"docx","order_by":8,"title":"","display":"","copyAsset":false,"role":"supplement","size":19738,"visible":true,"origin":"","legend":"","description":"","filename":"Appendixfile2.docx","url":"https://assets-eu.researchsquare.com/files/rs-8799346/v1/174a0ec56f0fdea4ec29bb09.docx"}],"financialInterests":"","formattedTitle":"Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eNeuroendocrine tumors (NETs) represent a heterogeneous group of rare neoplasms originating from neuroendocrine cells, which are widely distributed in the body and involved in the regulation of hormonal and nervous system functions [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. These tumors can occur in various organs, most commonly the gastrointestinal tract, pancreas, and lungs, and are notable for their capacity to produce and secrete hormones, often resulting in distinct clinical syndromes [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. While NETs have historically been considered indolent, their biological behavior spans a broad spectrum, from slow-growing to highly aggressive forms, necessitating careful classification and management [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn North America, NETs are uncommon, with an incidence of 5.45 patients per 100,000 [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Recent decades have seen significant progress in the diagnosis and treatment of NETs, driven by advances in imaging techniques, molecular profiling, and targeted therapies [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Despite these improvements, challenges persist, particularly in early detection, accurate pathological classification, and the development of personalized treatment and educational strategies [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. More recent longitudinal and narrative reviews also highlight the persistent impact of treatment on health-related quality of life (HRQoL) among neuroendocrine neoplasm survivors, underscoring the need to systematically integrate patient-reported outcomes and supportive care into routine NET management [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe rarity and heterogeneity of NETs create challenges for patients, such as delayed diagnosis and the lack of a standardized care pathway [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Moreover, the paucity of medical providers\u0026rsquo; awareness of NETs [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] can lead to insufficient information provided at diagnosis and a lack of referral to expert centers [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. These diagnostic delays and non-linear care pathways are increasingly recognized as key contributors to poorer outcomes and higher psychosocial burden among patients with rare cancers, including NETs, reinforcing the importance of timely access to specialized, multidisciplinary care and high-quality information from the outset of the trajectory.\u003c/p\u003e \u003cp\u003eHowever, patients diagnosed with NETs often face significant challenges in accessing accurate, comprehensive, and understandable information about their condition [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e](ref). Due to the rarity and heterogeneity of NETs, many patients report difficulties in obtaining timely and relevant resources, both at the time of diagnosis and throughout their treatment journey. Information is frequently scattered across specialized medical literature, patient advocacy websites, and healthcare provider portals, complicating access for non-specialists. International expert societies and patient organizations have repeatedly drawn attention to these systemic barriers, highlighting inequities in access to NET-specific expertise and educational resources across regions and healthcare systems. The European Neuroendocrine Tumor Society (ENETS) has highlighted these systemic barriers, particularly the disparities in access to high-quality care and information across Europe, as discussed at their 2024 annual conference and published in the Journal of Neuroendocrinology [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] (ENETS, 2024\u0026ndash;2025) enets.org. NET patients report that they are not sufficiently informed, do not know where to find information, and have difficulty finding quality information. Therefore, most of them turn to the Internet [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Similar concerns about the adequacy and timing of information have been reported in patients with gastroenteropancreatic NETs treated with somatostatin analogues [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eEmerging patient-centred tools such as NET VITALS and related self-assessment instruments have been developed to help patients organize key diagnostic and treatment information and structure discussions with their care team, yet recent implementation work shows that, despite these efforts, important knowledge gaps about tumour characteristics and treatments persist for many NET patients [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. However, the information available online is of low quality [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e], leaving patients with the complicated task of identifying relevant sources [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. With the incidence of NETs rising quickly [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e], it is crucial to clarify patients' informational needs and rectify the situation in order to provide optimal supportive care to these patients. In this context, disease-specific digital tools, such as personal health record software tailored to NET patients, represent promising approaches to structuring information, supporting self-management and improving communication with clinicians [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAdditionally, the complexity of NETs (encompassing diverse primary sites, hormonal syndromes, and treatment options) can overwhelm patients and their families, especially when explanations from healthcare professionals are limited by time constraints or lack of expertise in this specific field. Language barriers, varying health literacy levels, and the emotional impact of a rare cancer diagnosis further complicate access to reliable information. Recent qualitative and mixed-methods studies with NET patients and caregivers emphasize that information must be tailored not only to tumour biology and the treatment phase, but also to patients\u0026rsquo; evolving emotional state, preferences for detail, and preferred formats (e.g., written material, digital tools, peer-led resources) in order to be truly useful and actionable [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFor cancer patients, it is essential to provide adequate information on their disease in order to foster their participation in decision-making while enhancing their ability to cope with a health-threatening diagnosis [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. However, cancer patients\u0026rsquo; informational needs frequently go unmet [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e], which can lead to anxiety [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e] and decreased health-related quality of life [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. This is especially true for patients living with rare cancers, as this specific population reports up to 95% of their informational needs as unmet [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. These patients experience informational challenges, including lack of disease-specific information and limited access to clinical expertise and patient support groups [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e] More recently, systematic reviews of the survivors of rare cancers further confirm that people living with rare cancers report higher unmet information needs and lower satisfaction with information than survivors of more common cancers, and that very few of the evaluated interventions explicitly target the provison of information on rare tumour types [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e] Together with the emerging NET-specific literature, these findings highlight the need to better understand and address the specific informational needs of patients with NETs across the care continuum to inform the development of tailored, patient-centered resources and interventions.\u003c/p\u003e \u003cp\u003eTherefore, this paper aims to: (1) document NET patients\u0026rsquo; care trajectory and detail their challenges when trying to obtain information, and (2) identify patient-based solutions.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eFrom April to June 2023, we conducted a mixed method study in a single, academic healthcare center in Montreal, Canada that treats approximately 120 new cases of NET each year.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eParticipants’ recruitment\u003c/h3\u003e\n\u003cp\u003eEligibility criteria included: aged 18 years or older, speaking English or French, and having a small bowel or pancreatic NET for which they received care at the Surgical Oncology department. Potential participants were identified through purposeful sampling conducted by their surgical oncologist, who contacted them with general information about the study. If interested, they were called by a research team member who provided more details. Fifteen patients were approached, of which fourteen consented to participate in the study. The fifteenth patient was hospitalized during recruitment, and therefore was not interested in participating. One patient who had given consent was not available for the interview because of personal circumstances and was thus excluded. Patients could participate alone or be accompanied by a spouse.\u003c/p\u003e\n\u003ch3\u003eData collection and analysis\u003c/h3\u003e\n\u003cp\u003eData were collected from two different sources. An online questionnaire was sent to patients to collect information on sociodemographic characteristics, diagnosis and the specificity of their trajectory (see Appendix 1). Descriptive statistics were compiled from the questionnaires.\u003c/p\u003e \u003cp\u003eIn addition, the patients were invited to participate in semi-structured interviews aimed at detailing their care trajectory, information sources, informational needs, challenges faced, as well as ideas on improving information access. The interview guide was co-constructed with a patient who was part of the research team. Questions were tested with two other patients who provided feedback, leading to additional modifications. The final version of the guide was reviewed and approved by the entire team (see Appendix 2). Patients were interviewed either by phone, by videoconference or in person, depending on their preference, by one researcher (FB) who was not known to the participants. The interviews were recorded, transcribed verbatim and imported into QDA Miner 6.0.2 software for analysis (\"QDA Miner 6.0.2\" 2022) [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. The coding process was inductive, following the principles of grounded theory, and was carried out by two authors (FB, MPP) [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. A first thematic coding grid was built following analysis of two transcripts. Once both authors had agreed on an initial coding tree, two additional transcripts were coded and reviewed in a similar manner. Consensus for the coding tree was then reached, and all the remaining transcripts were coded accordingly. Theoretical saturation was reached after the tenth interview, meaning that no new information or themes emerged from the data collection at this point.\u003c/p\u003e \u003cp\u003e This study followed Consolidated criteria for reporting qualitative research (COREQ) guidelines, which are designed to enhance the transparency and rigor of reporting in qualitative research studies.\u003c/p\u003e\n\u003ch3\u003eEthical issues and approval\u003c/h3\u003e\n\u003cp\u003e The study was approved by CHUM\u0026rsquo;s Research Center Ethics Board (project number 22.016; 2023\u0026ndash;10600). All participants received a study information sheet and provided written informed consent. Only researchers involved in the data analysis had access to the data.\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003ePatients’ characteristics\u003c/h2\u003e \u003cp\u003eThirteen patients and four spouses participated, with interviews ranging in length from 40 to 108 minutes (mean: 64.5). Approximately half the patients were men (53.8%). Most patients were aged between 55 and 74 years (61.6%). Six patients had a university degree (46.2%) and all the patients believed they had enough money to at least meet their basic needs. The primary tumor site was the small bowel in nine patients (69.2%) and the pancreas in four patients (30.8%). Most patients had metastatic disease (84.6%). The sociodemographic characteristics and disease information are detailed in Tables\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e and \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, respectively.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" class=\"colspec\"\u003e\u003c/div\u003e\u003ctable id=\"Tab1\" border=\"1\"\u003e \u003ccaption\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePatients’ sociodemographic characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003c/colgroup\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\"\u003e \u003cp\u003eParticipants (n = 13)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eFemale sex — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e6 (46.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eAge distribution — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e24 years or younger\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e25 to 34 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e35 to 44 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e45 to 54 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e55 to 64 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e65 to 74 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e75 years or older\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eHighest level of education completed — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003ePartial high school education\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eHigh school diploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eDiploma or certificate from a college, technical school, or professional training school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eUniversity degree\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e6 (46.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eFinancial situation — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eSufficient income to meet basic needs\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e8 (61.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eFinancially comfortable\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e5 (38.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/table\u003e\u003c/div\u003e \u003cp\u003e\u003c/p\u003e \u003cp\u003e \u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" class=\"colspec\"\u003e\u003c/div\u003e\u003ctable id=\"Tab2\" border=\"1\"\u003e \u003ccaption\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003ePatients’ diagnosis and trajectory of care\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003c/colgroup\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\"\u003e \u003cp\u003ePatients (n = 13)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003ePrimary tumor localization — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eSmall bowel\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e9 (69.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003ePancreas\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eContext for the diagnosis — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003ePresence of symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e11 (84.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eFortuitous discovery\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eNumber of years since diagnosis — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e1–2 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e5 (38.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e3–5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e5 (38.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e\u0026gt; 5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eRecurrent disease — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eMetastatic disease — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e11 (84.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003eNumber of treatment modalities received — no. (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e0–1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e2–3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e7 (53.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\"\u003e \u003cp\u003e4–5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/table\u003e\u003c/div\u003e \u003cp\u003e\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eCare trajectory\u003c/h3\u003e\n\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eCharacteristics\u003c/h2\u003e \u003cp\u003eThe care trajectory varied widely among the participants. On average, 26.6 months separated symptom onset from the moment of diagnosis (range: 4 to 96). Symptomatic patients consulted a mean of 3.7 different doctors before receiving a NET diagnosis (range: 1 to 7), and 54.5% experienced diagnostic wandering.\u003c/p\u003e \u003cp\u003eDelays were common between diagnosis and referral to a center specializing in NET, with a mean of 12.8 months for patients with a first occurrence of NET (range: 0 to 60). One patient with recurrent disease also experienced a delay (18 months) between the time of recurrence and a referral. Patients met an average of 1.5 additional doctors before referral (range: 0 to 6), and all but one participant were referred by another medical specialist.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eChallenges\u003c/h2\u003e \u003cp\u003eThe main challenges experienced by a vast majority of the patients were organizational, including delays, limited access to certain diagnosis modalities and administrative issues.\u003c/p\u003e \u003cp\u003eBesides delays in diagnosis and referral, patients also described delays in obtaining exams or treatments. Participants commented on how the latter was amplified by the COVID-19 situation. Moreover, the limited accessibility of certain diagnostic tests further enhanced the problem.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eThe doctor sent me to get a scan at [hospital C], because the waiting time at [hospital A] was 6 months and [hospital B] was way too far for me. So, I had this scan in June 2020, but, with COVID and all that, it was longer, so I only got my colonoscopy in January 2021\u003c/em\u003e.” (Patient 02)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eVarious administrative issues were also described, which, in some cases, also delayed care, but most importantly created burdensome situations for patients. This includes confusion related to frequent turnover of nurse navigators and difficulty getting transferred to a hospital specializing in NETs.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eThey told me that they could not treat me there and that they needed to transfer me to a hospital specializing in NET. But it took a month, because the paperwork was not getting done. [...] I had to force someone’s hand on a Saturday afternoon to get transferred. [...] It wasn’t easy\u003c/em\u003e.” (Patient 12)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eOther frequent themes included uncertainty and worry, especially with regard to an unknown diagnosis, missing information, and waiting for exam results. Many patients also expressed loneliness related to the rarity of the disease. They reported feeling misunderstood and struggling with finding NET-specific resources.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eThere were conferences on hormonal therapy, but always for breast cancer, nothing for NET. [...] There isn’t anybody with NET on cancer blogs. [...] I’m alone in the world. [...] If you’re an alcoholic, you can share in AA. But with NET, you can’t share with anyone\u003c/em\u003e.” (Patient 05)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eInformation\u003c/h2\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003eInformational needs\u003c/h2\u003e \u003cp\u003eMost patients and their spouses felt well informed and described the information received as useful. This was mainly attributed to the information provided directly by their NET specialist, as well as the rest of the multidisciplinary team.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eI could truly ask any question of [my NET specialist]. When I wasn’t feeling well during treatments… There was always somebody there, someone I could ask: “Is this normal?” And… [my NET specialist] was very present\u003c/em\u003e.” (Patient 14)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eHowever, only less than half of participants believed the information they received was reliable. They described having difficulty determining whether the information on the Internet was accurate and how it applied to their situation. Some commented on the lack of NET-specific knowledge among some of the doctors they met, which led to being provided with incomplete or inexact information. These challenges caused experience discordances in the information received, inducing confusion and anxiety.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eWhen I look on the Internet [...], sometimes it seems that it isn’t exactly what the doctors tell us. [...] At the very beginning, when I met with my family doctor for my annual appointment, she told me: “It’s a cancer, but it can be removed by colonoscopy.” [...] But in the end, it wasn’t that at all. So that’s why I decided to rely only on [my NET specialist] and follow only his advice\u003c/em\u003e.” (Patient 02)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eAll the patients identified their diagnosis and the introduction of new treatments as key moments when they actively searched for additional information. Other triggers included hospitalizations, the postoperative period, bothersome symptoms, as well as personal circumstances, such as travel or fertility considerations.\u003c/p\u003e \u003cp\u003eInformation that was challenging to obtain included details on the definition of NETs, risk factors, life expectancy, and associated symptoms. Participants also desired more information on treatment, side effects and post-operative recovery.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eAccess to information\u003c/h2\u003e \u003cp\u003eAll the patients identified the Internet and their specialists as their principal sources, although they relied mainly on the latter to obtain information specific to their situation. Seven participants also identified fellow patients and members of the multidisciplinary team as useful resources. Other popular sources of information included relatives and documents provided by the hospital.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eOur son always came with us. It was reassuring because when [the healthcare provider] explained things, he would do some research afterwards and explain it in terms that we would understand. It was helpful because we had a better idea of where we were going, and we could prepare questions for the next appointment\u003c/em\u003e.” (Spouse 03)\u003c/p\u003e\u003cp\u003e“\u003cem\u003eWith all the documents that I received from healthcare providers [on a specific treatment], it seemed complete. I didn’t feel like I needed anything more than that\u003c/em\u003e.” (Patient 08)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eThe patients’ relationship with their NET specialists was also identified. The accessibility and trustworthiness of NET specialists were common themes and had a significant positive impact on patients, as specialists could demystify unclear areas and answer questions in a timely manner.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eBeing able to frequently meet with my medical team was reassuring. [...] My specialists knew my file, they knew how to talk to me and knew what my potential questions were, and they were able to help me through it\u003c/em\u003e.” (Patient 01)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eSome patients mentioned having a relative with healthcare-related knowledge, which helped them obtain quality information and better understand their disease and treatments. Those relatives participated in appointments, helped explain the information or guided patients in online research. Identified facilitators also included a low symptom-associated burden, efficient medical care and access to a multidisciplinary team, including nurse navigators.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eChallenges to information access\u003c/h2\u003e \u003cp\u003eThe paucity of high-quality, accessibly written information online often limited patients’ ability to autonomously find information. They depended on their NET specialists for answers, which could be limiting. Moreover, NETs’ complexity made it even more difficult for patients to understand their disease, despite repeated explanations. This was amplified by information overload and limited retention, especially with the emotional context associated with cancer-related discussions.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eWhen they were explaining what NETs were to me, I made them repeat it twice, you know. [...] And at some point, I thought I had understood my disease, but then I discussed something else with [my NET specialist], which made me realize I didn’t understand my disease.\u003c/em\u003e” (Patient 13)\u003c/p\u003e\u003cp\u003e“\u003cem\u003eEven if I tried to look for information, I have so little understanding that… I just relied on the doctors\u003c/em\u003e.” (Patient 04)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eHowever, some participants mentioned they preferred limiting the amount of information they read on the Internet or received during appointments, since it sometimes increased their anxiety instead of being helpful.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eI want to know enough to be prepared for what will happen next, to not be facing the unknown. But at the same time, I don’t want to know too much, because I’m afraid of discovering something I’d rather not know\u003c/em\u003e.” (Spouse 04)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eAnother frequent issue was discordances between the information provided by Internet searches, their previous doctors and their NET specialists. Patients also experienced discordances between the professional opinions of different doctors in the same tertiary institution, which was particularly difficult as it created additional uncertainty.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eThere is a surgeon telling me he wants to operate, another one tells me it isn’t a good idea, one oncologist telling me to undergo [a specific treatment], another telling me no… It’s very hard to make up our mind in those situations… And am I at the right place? What is the best treatment? Who has the answer?\u003c/em\u003e” (Patient 09)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eRecommendations\u003c/h2\u003e \u003cp\u003eThe first suggestion is to provide NET patients with universal access to nurse navigators. They provide information between medical appointments and liaise between the patient and the hospital.\u003c/p\u003e \u003cp\u003eThe second suggestion is to hold multidisciplinary meetings before a patient’s initial visit. Patients noted that such meetings were sometimes held after they had met each specialist separately, which could lead to discordances between the opinions expressed at those appointments, causing anxiety.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eIt made me panic a bit. I saw that one doctor favored one thing, the other favored something else… We knew it would be discussed by the tumor board, but I think I would rather have gotten the final decision instead of individual opinions. I know they wanted to be honest, but it just made me feel insecure\u003c/em\u003e.” (Patient 10)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eThe third suggestion is to develop NET-specific documents for distribution by the hospital, which currently do not exist. According to patients, such documents should be given at the moment of diagnosis and should include the definition of NETs, risk factors, symptoms, potential treatments and side effects. Some participants also expressed interest in a document on post-surgery recovery. However, such documents are generic. Some of the information might not apply to all patients. A patient suggested creating interactive tools that would provide targeted information after entering some disease-related data.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eYou read something and you tell yourself: ‘That isn’t my case.’ […] There isn’t a tool where you can complete a questionnaire and then get guidance, or, you know, something more targeted\u003c/em\u003e.” (Patient 01)\u003c/p\u003e\u003c/div\u003e\u003cp\u003e\u003c/p\u003e \u003cp\u003eFinally, the NET patients mentioned that they are well aware that every situation is different, but they would like to be able to talk to patients who have been through the same thing as them, to feel less alone in adversity and to talk about various strategies for facing the disease, the diagnosis, and the treatment. This need was also emphasized by their relatives.\u003c/p\u003e\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e“\u003cem\u003eI don't know if there is such a thing, but I would have loved to have met someone who has been through what I've been through, so I wouldn't feel so abandoned. My mother would’ve liked to meet someone like that, too.\u003c/em\u003e” (Patient 11)\u003c/p\u003e\u003c/div\u003e \u003c/div\u003e "},{"header":"Discussion","content":"\u003cp\u003eThis study, conducted with NET patients followed at the Surgical Oncology department of an academic healthcare center in Montreal, Canada highlights the ongoing burden of delays to receive a diagnosis and the complexity in accessing relevant information for patients.\u003c/p\u003e\u003ch2\u003eComplex trajectories due to professionals' lack of knowledge of these pathologies\u003c/h2\u003e\u003cp\u003eOur study shows consistently long waiting times before diagnosis. However, an international survey published in 2016 documented a patient-reported time of 52 months between the onset of symptoms and diagnosis [\u003cspan class=\"CitationRef\"\u003e10\u003c/span\u003e], nearly twice the time reported in our study (26.6 months). That survey’s participants also met an average of 6.2 doctors before diagnosis [\u003cspan class=\"CitationRef\"\u003e10\u003c/span\u003e], compared to 3.7 in our cohort. The difference may be due to our small sample size compared with that of the international study and also of the paucity of patients of low socioeconomic status in our study [\u003cspan class=\"CitationRef\"\u003e30\u003c/span\u003e]. This can also be explained by different diagnostic modalities [\u003cspan class=\"CitationRef\"\u003e4\u003c/span\u003e]. Indeed, promoting efficient referrals is crucial to providing high-quality multidisciplinary care and better prescription of the recommended treatments, with potentially improved survival rates [\u003cspan class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e31\u003c/span\u003e]. The main cause of these delays is the diagnostic wandering experienced by patients before they are able to access a specialist. It seems that front-line professionals and some specialists not only know little about the pathology, but also about where to refer patients. This is supported by the literature [\u003cspan class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e\u003ch2\u003eHard-to-find information resources for patients\u003c/h2\u003e\u003cp\u003eThe information online remains particularly problematic, with a predominance of low-quality information available through the common search engines [\u003cspan class=\"CitationRef\"\u003e17\u003c/span\u003e]. The limited readability of reliable websites highlights a definitive need to develop high-quality resources accessible to patients of low health literacy, including informational websites, chatbots and applications [\u003cspan class=\"CitationRef\"\u003e27\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThis study shows that most patients relied on their NET specialist to provide and explain the information. Fostering the patient-physician relationship allows the delivery of personalized, targeted information, especially since patients might seek different types and amounts of information [\u003cspan class=\"CitationRef\"\u003e32\u003c/span\u003e]. Nonetheless, physicians’ availability is restricted by time constraints [\u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e], and patients’ retention of communicated information can be limited [\u003cspan class=\"CitationRef\"\u003e32\u003c/span\u003e]. This calls for further attention to the importance of having multiple, reliable resources, including hospital-provided documents [\u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e], high-quality online information [\u003cspan class=\"CitationRef\"\u003e17\u003c/span\u003e], as well as nurse navigators and patient advisors [\u003cspan class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e33\u003c/span\u003e].\u003c/p\u003e\u003ch2\u003eAvenues of improvement for patients and professionals\u003c/h2\u003e\u003cp\u003eTo improve the trajectory, patients mention first and foremost the need for better training for front-line teams in how to diagnose these clinical situations, as well as better knowledge of the interdisciplinary teams specializing in these pathologies, as also mentioned in another study [\u003cspan class=\"CitationRef\"\u003e11\u003c/span\u003e]. It would also be feasible to provide rapid referral to multidisciplinary centers and dedicated nurse navigators, and to formulate a coordinated plan and decrease discordances [\u003cspan class=\"CitationRef\"\u003e31\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eIn terms of access to relevant information that is not dependent on specialists in the field, there is a growing interest in chatbots and applications, as they can provide efficient and personalized information rather than general data on the disease, fostering patients’ empowerment and autonomy. Such tools could be created for NET patients using the results of this study, which is the first to our knowledge to identify the information that should be included in such a document from a patient’s perspective. NET patients have also proposed the creation of NET-specific documents developed by experts, including not only for healthcare professionals but also for the patients who have to live with NET.\u003c/p\u003e\u003cp\u003eAnother avenue proposed in the literature is the implementation of NET-dedicated peer support programs [\u003cspan class=\"CitationRef\"\u003e34\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e35\u003c/span\u003e], which could alleviate the feelings of loneliness described in our study. Such programs have been shown to provide informational [\u003cspan class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e36\u003c/span\u003e] and emotional assistance to cancer patients [\u003cspan class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e37\u003c/span\u003e]. More specifically, recent literature has explored the role played by trained patient advisors in providing psychological support and experiential knowledge to help patients navigate the healthcare system [\u003cspan class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e38\u003c/span\u003e].\u003c/p\u003e\u003ch2\u003ePractice implications\u003c/h2\u003e\u003cp\u003eOur findings suggest several concrete implications for NET care. First, multidisciplinary teams should routinely screen for unmet informational needs at key transition points (e.g., diagnosis, treatment changes, disease progression) and schedule time for repeated explanations in plain language. Second, a clearly identified contact person, such as a nurse navigator, should be available to help patients interpret information, prepare questions and coordinate appointments. Third, teams should co-develop curated, multilingual NET-specific resources (websites, leaflets, videos, patient stories) with patients and caregivers, and make these resources systematically available during consultations.\u003c/p\u003e\u003cp\u003eIntegrating trained patient partners or peer supporters into NET clinics may reduce uncertainty, validate emotions and provide experiential knowledge that complements clinicians’ expertise. Finally, designing and testing digital tools tailored to NETs (e.g., personal health records, symptom and question trackers) could support self-management and improve communication between patients and their healthcare teams. Implementing these strategies may help reduce informational inequities, alleviate anxiety and improve quality of life for people living with NETs.\u003c/p\u003e\u003ch2\u003eStrengths and limitations\u003c/h2\u003e\u003cp\u003eThe main limitation of our study is its external validity. Our cohort only included patients with small bowel and pancreatic NET, the majority of which had metastatic disease, which might have a different care trajectory and different specific needs from other NET patients. Moreover, no participant was in a precarious financial situation, 38.5% of participants had a relative working in healthcare, and 46.2% held a university degree, compared to 28.5% in the general Canadian population (Government of Canada). This could increase our participants’ health literacy, leading to an underestimation of informational needs. Our study is also at risk of recall bias, since findings are based exclusively on patients’ responses.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eAlthough there has been progress, NET patients still experience significant diagnosis wandering and delays before being referred to a specialized center. Rapid referral is key to providing patients with varied resources to meet their informational needs, including medical specialists, hospital-provided documents, nurse navigators, and NET-dedicated peer support programs. There is a clear need to develop high-quality NET-specific informational sources that will be easily accessible online and easy to understand. Interactive and personalizable options such as chatbots and applications should also be considered. In this context, the research team is currently working on developing a digital platform that will enable people affected by neuroendocrine tumors to follow a personalized learning path in which all relevant and validated information is recorded and accessible, based on to the needs of patients and their loved ones [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003ch2\u003eEthical approval\u003c/h2\u003e \u003cp\u003e The study protocol was approved by the Research Ethics Board of the Centre hospitalier de l\u0026rsquo;Universit\u0026eacute; de Montr\u0026eacute;al (CHUM). All participants provided informed consent prior to data collection.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eDeclaration of competing interest\u003c/strong\u003e \u003cp\u003eThe authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eThis study was supported by CHUM Research Chair on the Evaluation of State-of-the-Art Technology and Methods. The funder had no role in the study design, data collection, analysis, interpretation of the data, or writing of the manuscript.\u003c/p\u003e\u003ch2\u003eAuthor contributions\u003c/h2\u003e \u003cp\u003eFB and FP contributed to the study conception and design, data collection, data analysis and drafting of the manuscript. SH, FM and MPP contributed to the interpretation of the findings and critically revised the manuscript for important intellectual content. All authors approved the final version of the manuscript and agreed to be accountable for all aspects of the work.\u003c/p\u003e\u003ch2\u003eAcknowledgments:\u003c/h2\u003e \u003cp\u003eWe sincerely thank all patients and accompanying patients who took part in the project for their steadfast commitment. This study was supported by the CHUM Research Chair on the Evaluation of State-of-the-Art Technology and Methods. We gratefully acknowledge Jim Kroening for his linguistic revision of this manuscript.\u003c/p\u003e\u003ch2\u003eData availability\u003c/h2\u003e \u003cp\u003eThe datasets generated and analysed during the current study are not publicly available due to privacy and confidentiality considerations, but are available from the corresponding author on reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eDasari A, Shen C, Halperin D, Zhao B, Zhou S, Xu Y, Shih T, Yao JC. Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017;3:1335\u0026ndash;42. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1001/jamaoncol.2017.0589\u003c/span\u003e\u003cspan address=\"10.1001/jamaoncol.2017.0589\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKlimstra DS, Modlin IR, Coppola D, Lloyd RV, Suster S. The Pathologic Classification of Neuroendocrine Tumors: A Review of Nomenclature, Grading, and Staging Systems. Pancreas. 2010;39:707\u0026ndash;12. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1097/MPA.0b013e3181ec124e\u003c/span\u003e\u003cspan address=\"10.1097/MPA.0b013e3181ec124e\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAhmed M. Gastrointestinal Neuroendocrine Tumors in 2020. World J Gastrointest Oncol. 2020;12:791\u0026ndash;807. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.4251/wjgo.v12.i8.791\u003c/span\u003e\u003cspan address=\"10.4251/wjgo.v12.i8.791\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHallet J, Law CHL, Cukier M, Saskin R, Liu N, Singh S. Exploring the Rising Incidence of Neuroendocrine Tumors: A Population-based Analysis of Epidemiology, Metastatic Presentation, and Outcomes. Cancer. 2015;121:589\u0026ndash;97. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/cncr.29099\u003c/span\u003e\u003cspan address=\"10.1002/cncr.29099\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStrosberg J, Gardner N, Kvols L. Survival and Prognostic Factor Analysis of 146 Metastatic Neuroendocrine Tumors of the Mid-Gut. Neuroendocrinology. 2009;89:471\u0026ndash;6. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1159/000197899\u003c/span\u003e\u003cspan address=\"10.1159/000197899\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFazio N, Buzzoni R, Delle Fave G, Tesselaar ME, Wolin E, Van Cutsem E, Tomassetti P, Strosberg J, Voi M, Bubuteishvili-Pacaud L, et al. Everolimus in Advanced, Progressive, Well‐differentiated, Non‐functional Neuroendocrine Tumors: RADIANT ‐4 Lung Subgroup Analysis. Cancer Sci. 2018;109:174\u0026ndash;81. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/cas.13427\u003c/span\u003e\u003cspan address=\"10.1111/cas.13427\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNaraev BG, Mailman J, Halfdanarson TR, Soares HP, Mittra ES, Hallet J. Consideration of Quality of Life in the Treatment Decision-Making for Patients with Advanced Gastroenteropancreatic Neuroendocrine Tumors. Expert Rev Anticancer Ther. 2023;23:601\u0026ndash;15. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1080/14737140.2023.2207829\u003c/span\u003e\u003cspan address=\"10.1080/14737140.2023.2207829\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eModica R, Benevento E, La Salvia A, Mazzilli R, Pandozzi C, Pecora G, Barrea L, Colao A, Faggiano A. __ Impact of Treatment on Quality of Life in Neuroendocrine Neoplasm Survivors. Endocr Relat Cancer. 2025;32:e240303. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1530/ERC-24-0303\u003c/span\u003e\u003cspan address=\"10.1530/ERC-24-0303\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFeinberg Y, Law C, Singh S, Wright FC. Patient Experiences of Having a Neuroendocrine Tumour: A Qualitative Study. Eur J Oncol Nurs. 2013;17:541\u0026ndash;5. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.ejon.2013.02.003\u003c/span\u003e\u003cspan address=\"10.1016/j.ejon.2013.02.003\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSingh S, Granberg D, Wolin E, Warner R, Sissons M, Kolarova T, Goldstein G, Pavel M, \u0026Ouml;berg K, Leyden J. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2017;3:43\u0026ndash;53. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1200/JGO.2015.002980\u003c/span\u003e\u003cspan address=\"10.1200/JGO.2015.002980\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLeyden S, Kolarova T, Bouvier C, Caplin M, Conroy S, Davies P, Dureja S, Falconi M, Ferolla P, Fisher G, et al. Unmet Needs in the International Neuroendocrine Tumor (NET) Community: Assessment of Major Gaps from the Perspective of Patients, Patient Advocates and NET Health Care Professionals. Int J Cancer. 2020;146:1316\u0026ndash;23. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/ijc.32678\u003c/span\u003e\u003cspan address=\"10.1002/ijc.32678\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGuccione L, Gough K, Drosdowsky A, Price T, Pavlakis N, Wyld D, Ransom D, Michael M, Schofield P. The Unmet Information Needs, Quality of Life, and Care Experiences of Patients with Neuroendocrine Tumours (NETs) at Follow-up: 6 Months from Diagnosis. Support Care Cancer Off J Multinatl Assoc Support Care Cancer. 2023;31:577. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00520-023-08034-5\u003c/span\u003e\u003cspan address=\"10.1007/s00520-023-08034-5\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEuropean Neuroendocrine Journal of Neuroendocrinology. \u003cem\u003eBarriers to Accessing High-Quality Care for Neuroendocrine Neoplasms (NENs) across Europe.\u003c/em\u003e; 2024.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHautefeuille V, Walter T, Do Cao C, Coriat R, Dominguez S, Mineur L, Cadiot G, Terrebonne E, Sobhani I, Gueguen D et al. OPERA: Perception of Information in Patients with Gastroenteropancreatic Neuroendocrine Tumors on Lanreotide Autogel. \u003cem\u003eEur. J. Endocrinol.\u003c/em\u003e 2023, \u003cem\u003e189\u003c/em\u003e, 281\u0026ndash;289. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1093/ejendo/lvad094\u003c/span\u003e\u003cspan address=\"10.1093/ejendo/lvad094\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLi D, Imbesi GJ, Yen L, Kim H, Sun C-L, Crook CJ, Ballena R, Zhang Y-H, Allen R, Sedrak M, et al. Feasibility and Satisfaction of Using NET VITALS Self-Assessment Tool Among Patients With Neuroendocrine Tumors. Pancreas. 2022;51:319\u0026ndash;24. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1097/MPA.0000000000002034\u003c/span\u003e\u003cspan address=\"10.1097/MPA.0000000000002034\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCrook CJ, Yen L, Ta K, Karimi M, Nguyen D, Lee RT, Li D. Proposed Implementation of a Patient-Centered Self-Assessment Tool for Patients with Neuroendocrine Tumors among Academic and Community Practice Sites: The City of Hope Model. J Clin Med. 2023;12:1229. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3390/jcm12031229\u003c/span\u003e\u003cspan address=\"10.3390/jcm12031229\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSohail S, Zuk V, Halfdanarson T, Chan D, Pattison S, Vasdev R, Law C, Hallet J. The Quality of Online Information for an Uncommon Malignancy\u0026mdash;Neuroendocrine Tumours (NETs). Curr Oncol. 2021;28:842\u0026ndash;6. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3390/curroncol28010082\u003c/span\u003e\u003cspan address=\"10.3390/curroncol28010082\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHourcade JP, O\u0026rsquo;Rorke M, Chrischilles E, Rudzianski NJ, Gryzlak B, Peterman K, Ortman C, Wolstencroft S, Bean M, Gellerman E, et al. Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach. JMIR Hum Factors. 2025;12:e68788. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.2196/68788\u003c/span\u003e\u003cspan address=\"10.2196/68788\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ede Hosson LD, Bouma G, Stelwagen J, van Essen H, de Bock GH, de Groot DJA, de Vries EGE, Walenkamp AME. Web-Based Personalised Information and Support for Patients with a Neuroendocrine Tumour: Randomised Controlled Trial. Orphanet J Rare Dis. 2019;14. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s13023-019-1035-3\u003c/span\u003e\u003cspan address=\"10.1186/s13023-019-1035-3\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOlsson F, Jangland E, Edfeldt K. Experiences and Fundamental Care Needs in Patients With Small Intestinal Neuroendocrine Tumours-An Interview Study in a Surgical Context. J Adv Nurs. 2025;81:2061\u0026ndash;71. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/jan.16441\u003c/span\u003e\u003cspan address=\"10.1111/jan.16441\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChua GP, Ng QS, Tan HK, Ong WS. Caregivers of Cancer Patients: What Are Their Information-Seeking Behaviours and Resource Preferences? \u003cem\u003eEcancermedicalscience\u003c/em\u003e 2020, \u003cem\u003e14\u003c/em\u003e, 1068. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3332/ecancer.2020.1068\u003c/span\u003e\u003cspan address=\"10.3332/ecancer.2020.1068\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLambert SD, Loiselle CG. Health Information\u0026mdash;Seeking Behavior. Qual Health Res. 2007;17:1006\u0026ndash;19. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1049732307305199\u003c/span\u003e\u003cspan address=\"10.1177/1049732307305199\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTariman JD, Doorenbos A, Schepp KG, Singhal S, Berry DL. Information Needs Priorities in Patients Diagnosed With Cancer: A Systematic Review. \u003cem\u003eJ. Adv. Pract. Oncol.\u003c/em\u003e 2014, \u003cem\u003e2014\u003c/em\u003e, 115\u0026ndash;122.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFerrari M, Ripamonti CI, Hulbert-Williams NJ, Miccinesi G. Relationships among Unmet Needs, Depression, and Anxiety in Non\u0026ndash;Advanced Cancer Patients. Tumori J. 2019;105:144\u0026ndash;50. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/0300891618765546\u003c/span\u003e\u003cspan address=\"10.1177/0300891618765546\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHusson O, Mols F, Van De Poll-Franse LV, Emmanuelle Jouet. Luigi Gino Flora, Olivier Las Vergnas. Construction et Reconnaissance Des Savoirs Exp\u0026eacute;rientiels Des Patients. Pratiques de Formation/Analyses: Revue Internationale de Sciences Hu Maines et Sociales, 2010, 2010 (58\u0026ndash;59), Pp.Olivier_lv. ࿽hal-00645113࿽. \u003cem\u003eAnn. Oncol.\u003c/em\u003e 2011, \u003cem\u003e22\u003c/em\u003e, 761\u0026ndash;772. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1093/annonc/mdq413\u003c/span\u003e\u003cspan address=\"10.1093/annonc/mdq413\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHeus E, Zwan JM, Husson O, Frissen A, Herpen CML, Merkx MAW, Duijts SFA. Unmet Supportive Care Needs of Patients with Rare Cancer: A Systematic Review. Eur J Cancer Care (Engl). 2021;30. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/ecc.13502\u003c/span\u003e\u003cspan address=\"10.1111/ecc.13502\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFarrugia T, Duijts SFA, Wilson C, Hemming L, Cockburn C, Spelten E. Addressing Cancer Survivors\u0026rsquo; Information Needs and Satisfaction: A Systematic Review of Potential Intervention Components for Survivors with a Rare Cancer Type. Orphanet J Rare Dis. 2024;19:387. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s13023-024-03403-7\u003c/span\u003e\u003cspan address=\"10.1186/s13023-024-03403-7\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMiner QDA. 6.0.2. In. Provalis Research; 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCharmaz K. \u003cem\u003eConstructing Grounded Theory\u003c/em\u003e; Introducing qualitative methods; 2. ed.; SAGE: Los Angeles, Calif., 2014; ISBN 978-0-85702-914-0.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHallet J, Coburn NG, Singh S, Beyfuss K, Koujanian S, Liu N, Law CHL. Access to Care and Outcomes for Neuroendocrine Tumours: Does Socioeconomic Status Matter? Curr Oncol. 2018;25:356\u0026ndash;64. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.3747/co.35.3930\u003c/span\u003e\u003cspan address=\"10.3747/co.35.3930\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSingh S, Law CM. Reference Centers: The Care of Neuroendocrine Tumors. J Oncol Pract. 2010;6:e11\u0026ndash;6. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1200/JOP.2010.000098\u003c/span\u003e\u003cspan address=\"10.1200/JOP.2010.000098\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSkalla KA, Bakitas M, Furstenberg CT, Ahles T, Henderson JV. Patients\u0026rsquo; Need for Information About Cancer Therapy. Oncol Nurs Forum. 2004;31:313\u0026ndash;9. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1188/04.ONF.313-319\u003c/span\u003e\u003cspan address=\"10.1188/04.ONF.313-319\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePomey MP, De Guise M, Desforges M, Bouchard K, Vialaron C, Normandin L, Iliescu-Nelea M, Fortin I, Ganache I, R\u0026eacute;gis C, et al. The Patient Advisor, an Organizational Resource as a Lever for an Enhanced Oncology Patient Experience (PAROLE-Onco): A Longitudinal Multiple Case Study Protocol. BMC Health Serv Res. 2021;21(10). \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12913-020-06009-4\u003c/span\u003e\u003cspan address=\"10.1186/s12913-020-06009-4\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHemming L, Duijts SFA, Zomerdijk N, Cockburn C, Yuen E, Hardman R, Van Vuuren J, Farrugia T, Wilson C, Spelten E. A Systematic Review of Peer Support Interventions to Improve Psychosocial Functioning among Cancer Survivors: Can Findings Be Translated to Survivors with a Rare Cancer Living Rurally? Orphanet J Rare Dis. 2024;19:473. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s13023-024-03477-3\u003c/span\u003e\u003cspan address=\"10.1186/s13023-024-03477-3\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKiemen A, Czornik M, Weis J. How Effective Is Peer-to-Peer Support in Cancer Patients and Survivors? A Systematic Review. J Cancer Res Clin Oncol. 2023;149:9461\u0026ndash;85. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00432-023-04753-8\u003c/span\u003e\u003cspan address=\"10.1007/s00432-023-04753-8\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCampbell HS, Phaneuf MR, Deane K. Cancer Peer Support Programs\u0026mdash;Do They Work? Patient Educ Couns. 2004;55:3\u0026ndash;15. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.pec.2003.10.001\u003c/span\u003e\u003cspan address=\"10.1016/j.pec.2003.10.001\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHoey LM, Ieropoli SC, White VM, Jefford M. Systematic Review of Peer-Support Programs for People with Cancer. Patient Educ Couns. 2008;70:315\u0026ndash;37. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.pec.2007.11.016\u003c/span\u003e\u003cspan address=\"10.1016/j.pec.2007.11.016\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJouet E et al. \u003cem\u003eConstruction et Reconnaissance Des Savoirs Exp\u0026eacute;rientiels Des Patients. Pratiques de Formation/Analyses: Revue Internationale de Sciences Humaines et Sociales, 2010, 2010 (58\u0026ndash;59), Pp.Olivier_lv. ⟨hal-00645113⟩.\u003c/em\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJackson M, Clovin T, Montiel C, Bogdanova E, C\u0026ocirc;t\u0026eacute; C, Descoteaux A, Wong C, Dumez V, Pomey M-P. Adopting a Learning Pathway Approach to Patient Partnership in Telehealth: A Proof of Concept. PEC Innov. 2023;3:100223. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.pecinn.2023.100223\u003c/span\u003e\u003cspan address=\"10.1016/j.pecinn.2023.100223\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\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":"Neuroendocrine tumor, cancer, information, needs, challenges","lastPublishedDoi":"10.21203/rs.3.rs-8799346/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8799346/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjectives\u003c/h2\u003e \u003cp\u003ePatients with neuroendocrine tumors (NETs) encounter various challenges, including delayed diagnosis and difficulty finding high-quality NET-specific information. They also have difficulty finding relevant information about their condition. The purpose of this study was to explore the experiences of patients living with NETs. More specifically, the objectives were to document their care trajectories and explore informational needs.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eFifteen NET patients were approached by their surgical oncologist. Thirteen agreed to participate in semi-structured interviews alone or with their spouse, as preferred. Interviews were transcribed verbatim and the analysis was inductive, allowing theories to emerge directly from the data. In addition, all participants completed a questionnaire to collect sociodemographic and disease-related data.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eAmong the patients recruited, a mean of 26.6 months separated the start of symptoms from the moment of diagnosis. On average, an additional 12.8 months elapsed before referral to a specialized center. Fully 76.5% of patients felt well informed, but only 47.1% believed the available information was reliable. Facilitating factors included their relationship with specialists, as well as having relatives working in healthcare and a multidisciplinary team, including nurse navigators. Significant challenges included discordances between the different sources of information, as well as having a limited understanding of medical terms.\u003c/p\u003e\u003ch2\u003eConclusions and implications for practice\u003c/h2\u003e \u003cp\u003eThere is great inequity in access to information and a lack of validated information available to patients and their relatives. Moreover, rapid referral to NET-specialized centers with access to a multidisciplinary team could ease patients\u0026rsquo; care trajectory and facilitate the provision of information.\u003c/p\u003e\u003ch2\u003ePractice implications\u003c/h2\u003e \u003cp\u003eHealthcare professionals caring for NET patients should systematically assess informational needs at key points in the trajectory, provide repeated plain-language explanations, and proactively direct patients to curated NET-specific resources. Nurse navigators, multidisciplinary teams and trained patient partners may help bridge information gaps, support shared decision-making and facilitate self-management.\u003c/p\u003e","manuscriptTitle":"Care trajectory, informational needs and challenges faced by patients with neuroendocrine tumors: a mixed methods study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-04 18:14:15","doi":"10.21203/rs.3.rs-8799346/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewersInvited","content":"","date":"2026-02-27T13:17:19+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"Orphanet Journal of Rare Diseases","date":"2026-02-09T10:52:26+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-02-06T15:11:35+00:00","index":"","fulltext":""},{"type":"submitted","content":"Orphanet Journal of Rare Diseases","date":"2026-02-05T11:31:29+00:00","index":"","fulltext":""}],"status":"published","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}}],"origin":"","ownerIdentity":"b8d7f077-1712-42aa-99ec-4327b849f7ac","owner":[],"postedDate":"March 4th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-03-04T18:14:15+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-04 18:14:15","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8799346","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8799346","identity":"rs-8799346","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}