Patient Experiences of Oncological Care in Comprehensive Cancer Networks: A Qualitative Study in Pancreatic Cancer

Patient Experiences of Oncological Care in Comprehensive Cancer Networks: A Qualitative Study in Pancreatic Cancer | 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 Patient Experiences of Oncological Care in Comprehensive Cancer Networks: A Qualitative Study in Pancreatic Cancer Joannes Franciscus Adrianus Gerardus van Broekhoven, Margot de Bruijn, and 7 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9113970/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract Background Patient-centered care in pancreatic cancer often involves complex coordination across Comprehensive Cancer Networks (CCNs). While CCNs aim to ensure equal access to expert care, little is known about how these structures affect patient experiences. This qualitative study explores patient perspectives to inform strategies for enhancing person-centered care in CCNs. Methods In this qualitative study used semi-structured interviews were conducted with 19 patients diagnosed with pancreatic cancer, who were referred for treatment with curative intent within two CCNs in the Netherlands. Semi-structured interviews explored patient experiences. Interview topics involved experiences of referrals and collaboration between hospitals and the role of FPs within CCNs. Thematic content analysis was performed. Results Four themes were identified: timely communication, patient expectations, preferred location, and coordination of oncological care. Patients reported positive experiences with timely communication upon referral and with advice for general healthcare centres from expert healthcare centres. Patients missed clear expectations from general healthcare centres upon referral. Personal preferences for the location of oncological treatment and follow-up care were dependent on factors as travel distance and trust in expertise. Patients felt safe with a referral to expert healthcare centres experienced and patients experienced variation in the engagement of FPs within CCNs. Conclusions This study provides valuable contributions to enhancing person-centred care within oncological networks. These findings can be applied in clinical practice to foster the further development of collaboration between hospitals and connected FPs in CCNs. Pancreatic Cancer Continuity of Care Patient experience Primary care/Primary health care Comprehensive Cancer Network 1. Background Despite the growing emphasis on patient-centered outcomes in the treatment of pancreatic cancer, empirical evidence on how network-based care models influence patient experiences remains limited. Understanding these experiences is essential for designing care pathways that align with patient values and preference. Pancreatic adenocarcinoma is an aggressive cancer. Due to late diagnosis, by often an asymptomatic course[ 1 ], only 10–20% of patients qualify for surgery upfront[ 2 ]. Curative treatment, involving surgery and (neo)adjuvant chemotherapy, is associated with high morbidity and mortality, and 5-year survival rates are 10–14% post-resection[ 3 , 4 ]. The developments in diagnostics, treatment and guidelines advance rapidly. Due to the rarity of pancreatic cancer, centralization of certain components is essential. Treatment of patients with pancreatic cancer is organized in Comprehensive Cancer Networks (CCNs), wherein hospitals collaborate and patients are referred to and from general and expert healthcare centres for surgical treatment. CCNs have been established to manage treatment of pancreatic cancer. CCNs ensure coordinated care, with equal access to expert care regardless of where patients are diagnosed. However, as care becomes more centralized, there may be less focus on patient-centeredness of care as personal preferences. This raises concerns about how this affects patients’ experiences with their treatment process and whether person-centred care might be compromised as a result[ 5 ]. Currently, a comprehensive understanding of patients’ experiences in network care remains limited. Prior studies have explored patients’ core values and priorities that patients hold regarding their care, focusing on their treatment processes and the patient journey through diagnostics, treatment and follow-up[ 6 – 8 ]. Patients with pancreatic cancer place high importance on physicians openly communicating the treatment expectations, particularly due to limited treatment options or extensive treatment regimens[ 9 ]. International guidelines recommend to discuss treatment options in a shared decision-making approach[ 10 ]. In addition, patients with potentially curable tumours are referred from and too general and expert centres for various stages of treatment in CCNs and Family Physicians (FP) also play a role throughout the care process[ 6 , 11 ]. Many transfers of information and communication is required for experience of a seamless care process for the patient. Effective communication and information exchange between healthcare professionals are crucial to maintaining patient-centred care[ 12 ]. Summarizing, little is known about patients’ experiences regarding hospital collaboration within CCNs in the treatment of patients with pancreatic cancer. This study aims to explore experiences of patients with pancreatic cancer referred within CCNs. 2. Methods 2.1. Design and Setting This qualitative study used semi-structured interviews to explore the experiences of patients with pancreatic cancer referred from general to and from expert healthcare centres within CCNs. In the Netherlands, there are seven CCNs, where surgery for pancreatic cancer is centralized in expert healthcare centres[ 13 ]. General and expert hospitals in CCNs coordinate diagnostics and surgical treatment, and discuss treatment plans in multihospital oncological multidisciplinary meetings. Participants are recruited from two networks; Onco-ZON (one expert healthcare centre and nine general healthcare centres) and Onco-Oost (one expert and seven general healthcare centres). To ensure anonymity of the CCNs they are (at random) referred to as CCN A and CCN B. 2.2. Population A purposive sampling strategy was used to select patients from the CCNs referred from general to expert healthcare centres for curative treatment. Other inclusion criteria required patients to have resectable, borderline resectable or locally advanced pancreatic adenocarcinoma. Additionally, eligible patients had started treatment between 3 and 18 months prior to the moment of inclusion, are over 18 years old and speak sufficient Dutch. Exclusion criteria were patients with additional primary malignancies, metastatic disease at diagnosis, or a life expectancy of less than three months. In CCN A seven patients were introduced to the study by their surgeon at follow-up consultations. All patients accepted participation. In CCN B, thirteen eligible patients were selected by a treating surgeon, and the study was introduced by the researcher by phone. These patients received information concerning the study. After this, for both networks researchers then confirmed participation by phone call, ensured written informed consent, and scheduled interviews. One patient at healthcare centre B declined participation. 2.3. Data collection In 2024, interviews were conducted by residents, trained in qualitative research, who were not involved in patient care. A semi-structured interview guide was used. The interview guide was based on literature and developed in consultation with experts of pancreatic cancer, CCN and surgical oncology, (Supplementary Material 1). Interview topics included the expectations and experiences related to the referral, the collaboration between hospitals and the role of FPs within CCNs. Interviews had a duration of approximately 45 minutes (range 30–70 minutes), were conducted in Dutch language via Microsoft Teams®, recorded and transcribed verbatim. To ensure anonymity, pseudonyms were used for individuals and CCNs mentioned during the transcription. Interviews were conducted until data saturation was achieved. 2.4. Analysis Thematic content analysis was performed using Atlas.ti, following Braun and Clarke’s six step process[ 14 ]. Thematic analysis is suitable for capturing nuanced patient perspectives throughout the patient journey. Our approach identified patterns within qualitative data through iterative phases; familiarization with the data (JB, MB independently), inductive coding (JB, MB independently), searching for themes (JB, MB), reviewing themes (JB, MB, CV, SM, PW, MK, RH), defining and naming themes, and producing the report. These steps ensured a thorough analysis[ 14 ]. To ensure rigor, double coding is applied and discordances between the researchers were discussed until consensus was reached. 3. Results The study included 19 participants (mean age: 68.5 years, range: 58–77), most were female ( n = 12). Participants were recruited from two CCNs: CCN A ( n = 7) and CCN B ( n = 12). (Neo)adjuvant chemotherapy was provided to six participants. Tumour stages varied among participants, with most patients having resectable stages ( n = 16), followed by locally advanced pancreatic cancer ( n = 2) and one with a borderline resectable tumour ( n = 1) . Table 1 provides an overview of participants’ characteristics. Table 1 Participant characteristics Particpant ID Age Gender CCN Chemotherapy Tumor Type 1 60 Male A No Resectable 2 69 Female A No Resectable 3 77 Male A No Resectable 4 65 Female A No Resectable 5 74 Male B Yes Resectable 6 71 Female B Yes Resectable 7 65 Female B No Resectable 8 62 Female B No LAPC 9 58 Male B Yes LAPC 10 75 Male B Yes Resectable 11 73 Female A No Resectable 12 60 Female A No Borderline-resectable 13 71 Female B No Resectable 14 62 Male B Yes Resectable 15 72 Female B No Resectable 16 69 Male B No Resectable 17 72 Female B No Resectable 18 60 Male B No Resectable 19 77 Female A Yes Resectable CCN: Comprehensive cancer Network, LAPC: locally advanced pancreatic cancer 3.1. Experiences of patients with pancreatic cancer within a CCN Four key themes were identified: timely communication, patient expectations, preferred location and coordination of oncological care, see Table 2 . Table 2 Themes, subthemes, and illustrative quote Themes and subthemes Illustrative Quote Timely communication Help and advice from expert healthcare professionals Quote 1: “You really feel like multiple people are looking how they can help you. They make a decision together, and that does give you a sense of trust. Together they come to a conclusion, and that's quite a large group coming to such a conclusion together. That gives you confidence.” – P12 Quote 2: “I was referred to … [general hospital], where several tests were done, but they said: ‘We don’t know’. This left us in a situation of limited progress. So, I asked, ‘Don’t you have colleagues in other hospitals you could consult?’ Because I knew that … [expert healthcare center] is more advanced in these cases. However, his response was: ‘Yes, that is an option, but I don’t want to use that yet.‘ As a result, no further action was taken.” – P1 Information exchange between hospitals Quote 3: “When I arrived in the expert healthcare center, I had already undergone tests in… [general healthcare center]. The first doctor immediately knew what was going on, and possessed all the information from … [general hospital]. Everything was well coordinated, so I didn’t have to explain everything again.” – P18 Quote 4: “I remember that when I was in …[expert healthcare center], they were missing a lot of information from … [general hospital]. Information about tests that had been performed were not available, so there was a gap in information, because I had been tested, but they had not received those results. Sometimes, there are still issues with this kind of communication.” – P13 Information exchange between expert healthcare center to own FP Quote 5: “After the surgery, the tissue was examined and multidisciplinary meeting report, it was shared with me and was sent to my FP. I then scheduled an appointment with my FP to discuss it with him. When I got there he had already read the results, so yeah, I like that. He knew exactly what they did. Some might wonder if it is necessary for him to know, but I personally value that he is well-informed.” – P14 Quote 6: “But I have to say, that sometimes the information from …[expert healthcare center] came a bit late. For example, she received the information rather late, such as we have had a telephone conversation with the doctor and that information hadn’t been shared yet. The processing of medical information sometimes took a while. Especially because my FP was so involved, I found that quite frustrating at times.” – P6 Patient expectations Communication and explanation about the referral Quote 7: “They basically said that there was nothing more they could do for me in … [general hospital]. The only step they could take was to forward information they had gathered to … [expert healthcare center], where they will see if they can help you further. They were very clear: ‘This is wat we can determine, but our expertise is no longer sufficient’. When capabilities in a hospital are exhausted, they will refer to more specialized centers.” – P16 Quote 8: “It was a shock, let me put it this way, I had expected something different. You get told there, it wasn’t anything serious, but this turned out to be something entirely unexpected.” – P5 Quote 9: “She told me everything was 100% fine, but she apologized several times during the conversation. She mentioned a lingering concern and asked if I wanted to go to [expert healthcare center]. I agreed, but was left wondering, if everything is truly fine, why the apologies? The next day, I was at the [expert healthcare center], and I was shocked. They immediately presented two pieces of paper with images and text and said: ‘This is the situation, and this is how we are going to do it.’ All I could think was: ‘Wait, everything was 100% fine, right?’” – P4 Variation in need for support from the FP Quote 10: “Yes, then we could talk about what she knew, and just have a conversation, just being able to tell my story. I can do that with my Quote 11: husband as well, but she’s my FP, so I did find that quite sad.” – P17 “I felt that at … [expert healthcare hospital] there were a lot of people I could call, and they were all part of my treatment at that time. I could reach them right away, which was really helpful for me. And then I also didn’t have to explain the whole story again.” – P12 Preferred location Variation in preferred healthcare center Quote 12: “Such cooperation should go beyond. It’s strange that in … [general hospital located on the geographical boundary of two oncological networks] they only have contact with … [expert healthcare center], which I find unfortunate. In hindsight, I would have preferred … (other expert healthcare center], because of the travel time and support from family. However, that option wasn’t possible, which I find very disappointing.” – P18 Quote 13: “Expertise in … [expert healthcare center], communication, the team that’s there and all the care is being closely together.” – P14 Quote 14: “Well, if chemotherapy is at … [expert healthcare center], then I would have to drive quite a distance each time. It’s definitely quite a long drive. [General hospital], can also provide the same treatment, that’s what they said in …[expert healthcare center], so that’s right nearby.” – P3 Variation in preferred healthcare center for follow-up care Quote 15: “I would prefer to go back to [general hospital], as it is just 10km away from here. Travel time plays a significant role for me.” – P11 Quote 16: “Well, because they did the surgery, they are my doctors. And basically, they were directly involved and know exactly what the situation is. This way, there’s no risk of something being only partially carried over or misunderstood. So I don’t have that issue now, and it gives me a good feeling.” – P18 Coordination of oncological care Efficiency of the referral process Quote 17: “I just had a safe feeling. Even though I struggled a little bit with the treatment, I always felt safe in … [expert healthcare center]. It was a protected and well cared environment.” – P13 Quote 18: “A more rapid response is what I expected. Let me put it this way, of course it’s different when dealing with something like knee pain, but in case of pancreatic cancer, one of most aggressive forms of cancer, I believe quicker action is necessary. It just felt like the process took too long.” – P14 Repeated diagnostics at expert healthcare center Quote 19: “Well, looking back, I had a very good feeling about it. At first, you think that they already have that information. But there were several weeks in between, so a lot of things could have been changed. And that’s what they said, so the process started all over again, but it was so fast. I was glad they took that approach.” – P14 Engagement of FP in trajectory Quote 20: “I said, ‘I have no idea’, so I discussed it with my FP. It was a very helpful conversation. It really helped me in making a decision.” – P14 FP: Family Physician 3.1.1. Timely communication 3.1.1.1. Help and advice from expert healthcare professionals Before a definitive diagnosis of pancreatic cancer, but when suspicion already existed, physicians in general healthcare centres sometimes reached for advice from expert healthcare physicians. This process was often facilitated through interdisciplinary consultations or multidisciplinary team meetings. Patients felt confident when there was early engagement and communication between general and expert healthcare centres during the diagnostic phase (Quote 1). However, during diagnostic uncertainty participants experienced that contact with the expert healthcare professionals for advice was late. Patients felt the connection and communication between general and expert healthcare professionals was not sufficiently accessible . They would value it if physicians involved a expert healthcare centre earlier when there is suspicion of pancreatic cancer (Quote 2). 3.1.1.2. Information exchange between hospitals Patients experienced an adequate and timely exchange of information between general and expert healthcare centres . When patients were referred to a expert healthcare centre and were seen shortly thereafter, the physicians already had access to complete medical records. Additionally, patients reported that the physicians were well-informed about their situation, allowing them to be well-prepared for new patients arriving at the outpatient clinic (Quote 3). In a few cases, patients experienced that the exchange of information between the second and expert healthcare centres was not optimal . This was mainly felt because physician at the expert healthcare centre was missing information (Quote 4). 3.1.1.3. Information exchange between expert healthcare centre to own FP When patients had appointments at their expert healthcare centre, treatment plans and appointments were often communicated to their FP. This allowed FP’s to become involved in the network. In most cases, patients experienced a good transfer of information from their expert healthcare centre to their FP . Patients especially noticed this when the FP was already informed at the start of the conversation (Quote 5). Few patients experienced inadequate transfer of information from their expert healthcare centre to their own FP , particularly regarding speed of information. This led to some frustration with participants (Quote 6). 3.1.2. Patient expectations 3.1.2.1. Communication and explanation about the referral In most cases, patients reported that they received a clear explanation from their physician about the referral to the expert healthcare centre. Due to this thorough communication, the reason for the referral was understandable, allowing patients to have clear expectations of what would occur at the expert healthcare centre (Quote 7). These elements contributed to fostering trust in upcoming consultations at the expert healthcare centre. In some cases, patients mentioned that explanation regarding the referral from general to expert care was insufficient . Particularly, the reason for referral was unclear to patients. In some cases, this caused distress, particularly when the possibility of pancreatic cancer was suddenly considered at the expert healthcare centre (Quote 8 & 9). 3.1.2.2. Variation in need for support of the FP “ Some patients experienced a need for support from the FP during their trajectory. This was primarily because they appreciated having someone to share their experiences with and felt the lack of an easily point of contact, which they typically associated with the FP’s role (Quote 10). Other patients felt no need for support from their FP . This was often due to a pre-existing distant relationship with their FP or because they felt adequately supported by healthcare professionals in their hospital (Quote 11). 3.1.3. Preferred location 3.1.3.1. Variation in preferred healthcare centre There were various patient experiences regarding the preferred location for surgical treatment. For instance, one patient indicated a desire to be referred to a different expert healthcare centre due to the proximity of family in that region. However, boundaries of oncological networks did not allow patients to be referred to a different network from their general healthcare centre (Quote 12). Regarding the preferred location of (neo)adjuvant chemotherapy, various opinions were identified. Some individuals preferred (neo)adjuvant chemotherapy at the expert healthcare centre because they highly valued the convenience of receiving all care at a single location and had confidence in the expertise (Quote 13). Others had positive experiences receiving (neo)adjuvant chemotherapy at general healthcare centres due to shorter travel times and lower costs for travel (Quote 14). 3.1.3.2. Variation in preferred healthcare centre for follow-up care Follow-up care for patients may also be provided at various locations. The preferred setting of follow-up care could be in their general healthcare centre, but also in their expert healthcare centre. Patients’ preferences regarding the location of their follow-up care were consistent with their preferences for receiving (neo)adjuvant chemotherapy. Travel distance and the need for specialized expertise determined preferences for location of follow-up care (Quote 15). Additionally, specifically for follow-up care, patients expressed a preference to have the same physician (Quote 16). Patients reported feeling comforted when they were able to continue with the same physician in their follow-up care. 3.1.4. Coordination of oncological care 3.1.4.1 Efficiency of the referral process Patients generally reported good experiences with referrals to expert healthcare centres. They often perceived that expert healthcare centres provided a feeling of safety and confidence (Quote 17). A single participant experienced that the referral to the expert healthcare centre was too late. This resulted in feelings of slight frustration and a sense of insufficient urgency (Quote 18). 3.1.4.2 Repeated diagnostics at expert centre Patients who underwent repeated diagnostics at the expert healthcare centre often mentioned feeling no inconvenience . Instead, they experienced a sense of safety, as it may be of higher quality, more up-to-date, and they were provided with additional information (Quote 19). 3.1.4.3 Engagement of FP in trajectory Patients had diverse experiences regarding engagement of the FP. This role differed among patients, ranging from minimal contact to highly involved FP’s throughout the entire care trajectory. Some patients experienced positive experiences when their FP was actively engaged throughout the whole trajectory . This involvement included the FP initiating contact to check about the patient’s well-being of if any aid was needed, whether through phone calls or home visits (Quote 20). 4. Discussion This study provides insights into the experiences of patients with pancreatic cancer within CCNs and found four themes, focusing on timely communication, expectations, location of care and coordination of care. It highlights the importance of communication of the treatment process and early collaboration to build trust and reduce stress. While most patients reported positive experiences with referrals and information exchange, some experienced unclear referral reasons. Patients' preferences for location of oncological treatment and follow-up care were balanced between expertise of expert healthcare centres and convenience of care in general healthcare centres due to travel time and costs. Additionally, patients had varying needs for roles of FPs within CCNs. Timely advise and information exchange, clear expectations upon referral, taking account preferences of location and seamless coordination of care with engagement of FPs contributes to the experience of person-centred care. 4.1. Comparison with previous literature The critical role of clear communication and early collaboration between general and expert healthcare centres during the diagnostic phase, as identified in our study, increases confidence and trust when these interactions happen promptly. This is also observed in the study by Hopstaken et al. (2021), who emphasized the importance of inter-organizational communication in ensuring continuity of care within CCNs for pancreatic cancer[ 12 ]. With regard to expectations upon referral to an expert centre, studies confirm that sometimes patients are unaware of what to expect in the expert hospital. Patients are even unaware of the cancer diagnosis when being referred to the expert healthcare centre[ 9 , 15 ]. These insights suggest that clear communication and well-functioning referral processes remain essential for enhancing patient experiences in CCNs[ 16 ]. We identified that there is a variation in engagement of FPs, which points out that there are persistent difficulties in fully integrating FPs within CCNs. Abma et al. (2022) highlight the FP’s crucial role as a consistent and trusted figure throughout the care trajectory, providing continuity of care and psychological support[ 11 ]. The current study supports these findings, as some patients valued their FPs involvement, particularly for emotional and practical guidance. Additionally, research by Sarfo et al. (2023) emphasize the crucial role that FPs play in guiding cancer patients. Their involvement contributes to reducing patient anxiety and fosters a sense of stability throughout the process[ 17 ]. These findings underline the necessity of clearly defining the FPs role within the network, to ensure that care is aligned with patients’ needs and preferences. 4.2. Strengths and limitations This study has several notable strengths. First, in-depth insights gained through qualitative methods are a key strength. Exploration of patients' experiences within CCNs, particularly regarding referrals and hospital collaboration, provides a thorough understanding of this complex issue. Semi-structured interviews further enhance the study, allowing flexibility to explore personal experiences in more depth, resulting in rich, diverse data. Furthermore, the diversity of participants from two oncology networks improves transferability, as it allows for a broader range of perspectives that may be applicable to similar contexts. An additional methodological strength is achieving data saturation. No new themes emerged in final interviews, indicating a comprehensive understanding of the topic. Finally, this study explores a gap in literature by exploring patient experiences in CCNs, a relatively unexplored area. Despite strengths, this study has some limitations. There is a potential selection bias in this study, as the participant group consists of patients with pancreatic cancer who are still alive and have a life expectancy of more than three months. This is a limitation, as patients who have already passed away could not be included, and their experiences were not captured. To address this limitation in future research, participants could be included shortly after diagnosis, rather than waiting until three months after the start of treatment. Additionally, in the case of interviewing relatives in subsequent studies could provide valuable insights into both the experiences of patients, and perspectives of relatives of both living and deceased patients. Furthermore, difficulties in patient inclusion arose due to different recruitment processes between hospitals. CCN A was dependent on the incidence of patients for follow-up that met inclusion criteria. In contrast, CCN B offered a quicker access to eligible patients based on patients characteristics, allowing smoother recruitment. This resulted in the inclusion of seven participants in CCN A and twelve participants in CCN B. This represents a slight imbalance in the sample, which may affect transferability of findings. However, both CCN’s have in common that they are young, only 12 and 5 years since formalisation of the networks, which may be too short for CCN’s to impact patients experience. 5. Conclusion In conclusion, this study highlights the importance of clear communication and timely collaboration between general and expert healthcare centres, supported by effective information exchange for patients with pancreatic cancer. Additionally, person-centred care plays a key role in addressing the diverse needs of patients, particularly regarding location of care and involvement of FPs within CCNs. This study provides insights to enhance patient-centered care in CCNs. By addressing communication gaps, clarifying referral expectations, and integrating family physicians, CCNs can better align care delivery with patient values and preferences. These findings can be integrated into clinical practice to foster further development of collaboration between healthcare professionals in the treatment of patients with pancreatic cancer. While this study focused on patients with pancreatic cancer, the conclusions may be translated to other patient groups with different forms of cancer or complex diseases, requiring intensive treatment in a regional network. Abbreviations CCN Comprehensive Cancer Network FP Family Physician LAPC Locally advanced pancreatic cancer BRPC Borderline resectable pancreatic cancer Declarations Ethical approval statement and consent to publication Ethical approval is not required for this type of study under Dutch law. An exemption was obtained from the local Medical Ethics Committee CMO Regio Arnhem-Nijmegen (file number 2023-16390). All procedures performed in this study involving participants were conducted in accordance with the Declaration of Helsinki. Written informed consent was obtained from all participants prior to participation in the study, including consent for audio recording. Participation was voluntary, and participants were informed of their right to withdraw at any time without consequence. Consent for publication Not applicable Availability of data and materials statement The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to restrictions e.g. their containing information that could compromise the privacy of research participants and the involved CCNs. Competing interests The authors declare that they have no competing interests. Funding This study was supported by an internal grant from the Radboudumc, which funded a multidisciplinary research group of the science department IQ Health. The goal was to study value of complex care networks for patients. The funding body had no role in the study design, execution, analysis, interpretation of the data or the decision to publish results. The funding body had no role in the writing of this manuscript. Authors' contributions JB, MB, CV, SM, PW, MK, and RH contributed to the conceptualization of the study. JB, MB and CV were responsible for data curation and formal analysis. JB, MB, CV, SM, PW, MK, and RH contributed to the methodology. SB, SO, SM, PW, and MK contributed resources and validation. SM, PW, MK, and RH supervised the study. JB, MB and CV wrote the original draft of the manuscript. JB, MB, CV, SB, SO, SM, MK, and RH contributed to reviewing and editing the manuscript. All authors read and approved the final manuscript. Acknowledgements We acknowledge our collaboration to Onco-Oost and OncoZon, both regional CCNs, for their participation in research project. 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Roles of general practitioners in shared decision-making for patients with cancer: A qualitative study. Eur J Cancer Care (Engl). 2022;31:e13594. https://doi.org/10.1111/ecc.13594 . Hopstaken JS, van Dalen D, van der Kolk BM, van Geenen EJM, Hermans JJ, Gootjes EC, et al. Continuity of care experienced by patients in a multi-institutional pancreatic care network: a pilot study. BMC Health Serv Res. 2021;21:416. https://doi.org/10.1186/s12913-021-06431-2 . Integral Cancer Centre. Pancreatic Cancer in the Netherlands: Small steps foward: Trends and analysis [Internet]. Utrecht: Integral Cancer Centre. 2023 Nov. https://iknl.nl/alvleesklierkanker-in-nederland . Accessed 13 Apr 2023. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol Routledge. 2006;3:77–101. https://doi.org/10.1191/1478088706qp063oa . Furber L, Bonas S, Murtagh G, Thomas A. Patients’ experiences of an initial consultation in oncology: knowing and not knowing. Br J Health Psychol. 2015;20:261–73. https://doi.org/10.1111/bjhp.12096 . Tran Y, Lamprell K, Nic Giolla Easpaig B, Arnolda G, Braithwaite J. What information do patients want across their cancer journeys? A network analysis of cancer patients’ information needs. Cancer Med. 2019;8:155–64. https://doi.org/10.1002/cam4.1915 . Sarfo M-C, Bertels L, Frings-Dresen MHW, de Jong F, Blankenstein AH, van Asselt KM, et al. The role of general practitioners in the work guidance of cancer patients: views of general practitioners and occupational physicians. J Cancer Surviv. 2023;17:416–24. https://doi.org/10.1007/s11764-022-01211-1 . Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9113970","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":631653432,"identity":"9f9d9c32-7625-4cc4-a5ae-e59f6ce7e7e3","order_by":0,"name":"Joannes Franciscus Adrianus Gerardus van Broekhoven","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Joannes","middleName":"Franciscus Adrianus Gerardus van","lastName":"Broekhoven","suffix":""},{"id":631653434,"identity":"0eba0b52-aa2c-4e1a-92b5-41488d9245ca","order_by":1,"name":"Margot de Bruijn","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Margot","middleName":"","lastName":"de Bruijn","suffix":""},{"id":631653436,"identity":"6b8ef723-c8ab-4b6b-98fe-0ccf3e96390f","order_by":2,"name":"Cilla Elisabeth Jacobus Vrinzen","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Cilla","middleName":"Elisabeth Jacobus","lastName":"Vrinzen","suffix":""},{"id":631653444,"identity":"36f1a1c7-8091-487d-ac2c-1fb706276289","order_by":3,"name":"Stefan AW Bouwense","email":"","orcid":"","institution":"Maastricht University Medical Center+","correspondingAuthor":false,"prefix":"","firstName":"Stefan","middleName":"AW","lastName":"Bouwense","suffix":""},{"id":631653445,"identity":"9b3d95aa-e73c-4ea7-808f-1e5bf54559b6","order_by":4,"name":"Steven WM Olde Damink","email":"","orcid":"","institution":"Maastricht University Medical Center+","correspondingAuthor":false,"prefix":"","firstName":"Steven","middleName":"WM Olde","lastName":"Damink","suffix":""},{"id":631653446,"identity":"9e645a48-9e08-46c6-a230-347854089b6b","order_by":5,"name":"Sasja Mulder","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Sasja","middleName":"","lastName":"Mulder","suffix":""},{"id":631653448,"identity":"967aaad9-bd2a-4e82-a008-9f1770eb4f0d","order_by":6,"name":"Philip van der Wees","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Philip","middleName":"van der","lastName":"Wees","suffix":""},{"id":631653449,"identity":"15ce1413-109f-4344-966f-4ee40eb9786d","order_by":7,"name":"Marion van der Kolk","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABK0lEQVRIie2QMWuDQBTHnwh2OfcTW/sVDELagNCvkqNwGRqnTN0qBSdJV6X0OyiB4mgQdDF0vaFDQiGboGPo0itJKNHWucP94OBxj9/93z0AgeAfYqYA6bEGyYNzfPYAoPJzuL9uK6NTxQeEUXqi4LZyk/7UXAm4gsf9yrBYbdImAfL0/Bh/3Ec20sJqU1eJTebsjtRS0lXKibkMSyDBez4brNYU6frE0l5KSkLmLLBUdpWUQqZ6YAGbDjV3nSFDp6CrXkYi5rzyhXQU8227Vy7Z9GrnRlzRcvmzV2H7FMPkKZIbZEjHitKfwrawDD1sDBidaa5PkeZTZcT/YoVltcDkt8GoXDeejQx2GzeuZxu4yGXGN3YxL5z4u9VWDnSeOjL+qyEQCASCPr4AapB5YWszG3YAAAAASUVORK5CYII=","orcid":"","institution":"Maastricht University Medical Center+","correspondingAuthor":true,"prefix":"","firstName":"Marion","middleName":"van der","lastName":"Kolk","suffix":""},{"id":631653450,"identity":"30224554-a7ec-4582-ae78-6f1a2a5d1e4d","order_by":8,"name":"Rosella Hermens","email":"","orcid":"","institution":"Radboud University Nijmegen Medical Centre","correspondingAuthor":false,"prefix":"","firstName":"Rosella","middleName":"","lastName":"Hermens","suffix":""}],"badges":[],"createdAt":"2026-03-13 11:08:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9113970/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9113970/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108804119,"identity":"7b9856ef-60fb-407c-9212-a45f96bc6e70","added_by":"auto","created_at":"2026-05-08 15:16:06","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":322996,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9113970/v1/6eddd7f7-57f4-4961-82f3-3ba32006944d.pdf"},{"id":108217311,"identity":"dbc2b25a-2f47-44ca-ac79-aa03eca9c889","added_by":"auto","created_at":"2026-04-30 14:47:00","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":17294,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryMaterial1interviewguide.docx","url":"https://assets-eu.researchsquare.com/files/rs-9113970/v1/57513850174b333740cffc52.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patient Experiences of Oncological Care in Comprehensive Cancer Networks: A Qualitative Study in Pancreatic Cancer","fulltext":[{"header":"1. Background","content":"\u003cp\u003eDespite the growing emphasis on patient-centered outcomes in the treatment of pancreatic cancer, empirical evidence on how network-based care models influence patient experiences remains limited. Understanding these experiences is essential for designing care pathways that align with patient values and preference.\u003c/p\u003e \u003cp\u003ePancreatic adenocarcinoma is an aggressive cancer. Due to late diagnosis, by often an asymptomatic course[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e], only 10\u0026ndash;20% of patients qualify for surgery upfront[\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Curative treatment, involving surgery and (neo)adjuvant chemotherapy, is associated with high morbidity and mortality, and 5-year survival rates are 10\u0026ndash;14% post-resection[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. The developments in diagnostics, treatment and guidelines advance rapidly. Due to the rarity of pancreatic cancer, centralization of certain components is essential.\u003c/p\u003e \u003cp\u003eTreatment of patients with pancreatic cancer is organized in Comprehensive Cancer Networks (CCNs), wherein hospitals collaborate and patients are referred to and from general and expert healthcare centres for surgical treatment. CCNs have been established to manage treatment of pancreatic cancer. CCNs ensure coordinated care, with equal access to expert care regardless of where patients are diagnosed. However, as care becomes more centralized, there may be less focus on patient-centeredness of care as personal preferences. This raises concerns about how this affects patients\u0026rsquo; experiences with their treatment process and whether person-centred care might be compromised as a result[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCurrently, a comprehensive understanding of patients\u0026rsquo; experiences in network care remains limited. Prior studies have explored patients\u0026rsquo; core values and priorities that patients hold regarding their care, focusing on their treatment processes and the patient journey through diagnostics, treatment and follow-up[\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Patients with pancreatic cancer place high importance on physicians openly communicating the treatment expectations, particularly due to limited treatment options or extensive treatment regimens[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. International guidelines recommend to discuss treatment options in a shared decision-making approach[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn addition, patients with potentially curable tumours are referred from and too general and expert centres for various stages of treatment in CCNs and Family Physicians (FP) also play a role throughout the care process[\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Many transfers of information and communication is required for experience of a seamless care process for the patient. Effective communication and information exchange between healthcare professionals are crucial to maintaining patient-centred care[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSummarizing, little is known about patients\u0026rsquo; experiences regarding hospital collaboration within CCNs in the treatment of patients with pancreatic cancer. This study aims to explore experiences of patients with pancreatic cancer referred within CCNs.\u003c/p\u003e"},{"header":"2. Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1. Design and Setting\u003c/h2\u003e \u003cp\u003eThis qualitative study used semi-structured interviews to explore the experiences of patients with pancreatic cancer referred from general to and from expert healthcare centres within CCNs. In the Netherlands, there are seven CCNs, where surgery for pancreatic cancer is centralized in expert healthcare centres[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. General and expert hospitals in CCNs coordinate diagnostics and surgical treatment, and discuss treatment plans in multihospital oncological multidisciplinary meetings. Participants are recruited from two networks; Onco-ZON (one expert healthcare centre and nine general healthcare centres) and Onco-Oost (one expert and seven general healthcare centres). To ensure anonymity of the CCNs they are (at random) referred to as CCN A and CCN B.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2. Population\u003c/h2\u003e \u003cp\u003eA purposive sampling strategy was used to select patients from the CCNs referred from general to expert healthcare centres for curative treatment. Other inclusion criteria required patients to have resectable, borderline resectable or locally advanced pancreatic adenocarcinoma. Additionally, eligible patients had started treatment between 3 and 18 months prior to the moment of inclusion, are over 18 years old and speak sufficient Dutch. Exclusion criteria were patients with additional primary malignancies, metastatic disease at diagnosis, or a life expectancy of less than three months.\u003c/p\u003e \u003cp\u003eIn CCN A seven patients were introduced to the study by their surgeon at follow-up consultations. All patients accepted participation. In CCN B, thirteen eligible patients were selected by a treating surgeon, and the study was introduced by the researcher by phone. These patients received information concerning the study. After this, for both networks researchers then confirmed participation by phone call, ensured written informed consent, and scheduled interviews. One patient at healthcare centre B declined participation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3. Data collection\u003c/h2\u003e \u003cp\u003eIn 2024, interviews were conducted by residents, trained in qualitative research, who were not involved in patient care. A semi-structured interview guide was used. The interview guide was based on literature and developed in consultation with experts of pancreatic cancer, CCN and surgical oncology, (Supplementary Material 1). Interview topics included the expectations and experiences related to the referral, the collaboration between hospitals and the role of FPs within CCNs. Interviews had a duration of approximately 45 minutes (range 30\u0026ndash;70 minutes), were conducted in Dutch language via Microsoft Teams\u0026reg;, recorded and transcribed verbatim. To ensure anonymity, pseudonyms were used for individuals and CCNs mentioned during the transcription. Interviews were conducted until data saturation was achieved.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4. Analysis\u003c/h2\u003e \u003cp\u003eThematic content analysis was performed using Atlas.ti, following Braun and Clarke\u0026rsquo;s six step process[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Thematic analysis is suitable for capturing nuanced patient perspectives throughout the patient journey. Our approach identified patterns within qualitative data through iterative phases; familiarization with the data (JB, MB independently), inductive coding (JB, MB independently), searching for themes (JB, MB), reviewing themes (JB, MB, CV, SM, PW, MK, RH), defining and naming themes, and producing the report. These steps ensured a thorough analysis[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. To ensure rigor, double coding is applied and discordances between the researchers were discussed until consensus was reached.\u003c/p\u003e \u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003eThe study included 19 participants (mean age: 68.5 years, range: 58\u0026ndash;77), most were female (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;12). Participants were recruited from two CCNs: CCN A (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;7) and CCN B (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;12). (Neo)adjuvant chemotherapy was provided to six participants. Tumour stages varied among participants, with most patients having resectable stages (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;16), followed by locally advanced pancreatic cancer (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;2) and one with a borderline resectable tumour (\u003cem\u003en\u0026thinsp;=\u0026thinsp;1)\u003c/em\u003e. Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e provides an overview of participants\u0026rsquo; characteristics.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipant characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticpant ID\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCCN\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eChemotherapy\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eTumor Type\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e77\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e65\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e65\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eLAPC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eLAPC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e75\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e73\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eBorderline-resectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eNo\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e77\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eResectable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"6\"\u003e\u003cem\u003eCCN: Comprehensive cancer Network, LAPC: locally advanced pancreatic cancer\u003c/em\u003e\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e3.1. Experiences of patients with pancreatic cancer within a CCN\u003c/h2\u003e \u003cp\u003eFour key themes were identified: timely communication, patient expectations, preferred location and coordination of oncological care, see Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes, subthemes, and illustrative quote\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThemes and subthemes\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIllustrative Quote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTimely communication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHelp and advice from expert healthcare professionals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 1: \u0026ldquo;You really feel like multiple people are looking how they can help you. They make a decision together, and that does give you a sense of trust. Together they come to a conclusion, and that's quite a large group coming to such a conclusion together. That gives you confidence.\u0026rdquo; \u0026ndash; P12\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 2: \u0026ldquo;I was referred to \u0026hellip; [general hospital], where several tests were done, but they said: \u0026lsquo;We don\u0026rsquo;t know\u0026rsquo;. This left us in a situation of limited progress. So, I asked, \u0026lsquo;Don\u0026rsquo;t you have colleagues in other hospitals you could consult?\u0026rsquo; Because I knew that \u0026hellip; [expert healthcare center] is more advanced in these cases. However, his response was: \u0026lsquo;Yes, that is an option, but I don\u0026rsquo;t want to use that yet.\u0026lsquo; As a result, no further action was taken.\u0026rdquo; \u0026ndash; P1\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInformation exchange between hospitals\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 3: \u0026ldquo;When I arrived in the expert healthcare center, I had already undergone tests in\u0026hellip; [general healthcare center]. The first doctor immediately knew what was going on, and possessed all the information from \u0026hellip; [general hospital]. Everything was well coordinated, so I didn\u0026rsquo;t have to explain everything again.\u0026rdquo; \u0026ndash; P18\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 4: \u0026ldquo;I remember that when I was in \u0026hellip;[expert healthcare center], they were missing a lot of information from \u0026hellip; [general hospital]. Information about tests that had been performed were not available, so there was a gap in information, because I had been tested, but they had not received those results. Sometimes, there are still issues with this kind of communication.\u0026rdquo; \u0026ndash; P13\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInformation exchange between expert healthcare center to own FP\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 5: \u0026ldquo;After the surgery, the tissue was examined and multidisciplinary meeting report, it was shared with me and was sent to my FP. I then scheduled an appointment with my FP to discuss it with him. When I got there he had already read the results, so yeah, I like that. He knew exactly what they did. Some might wonder if it is necessary for him to know, but I personally value that he is well-informed.\u0026rdquo; \u0026ndash; P14\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 6: \u0026ldquo;But I have to say, that sometimes the information from \u0026hellip;[expert healthcare center] came a bit late. For example, she received the information rather late, such as we have had a telephone conversation with the doctor and that information hadn\u0026rsquo;t been shared yet. The processing of medical information sometimes took a while. Especially because my FP was so involved, I found that quite frustrating at times.\u0026rdquo; \u0026ndash; P6\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatient expectations\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunication and explanation about the referral\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 7: \u0026ldquo;They basically said that there was nothing more they could do for me in \u0026hellip; [general hospital]. The only step they could take was to forward information they had gathered to \u0026hellip; [expert healthcare center], where they will see if they can help you further. They were very clear: \u0026lsquo;This is wat we can determine, but our expertise is no longer sufficient\u0026rsquo;. When capabilities in a hospital are exhausted, they will refer to more specialized centers.\u0026rdquo; \u0026ndash; P16\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 8: \u0026ldquo;It was a shock, let me put it this way, I had expected something different. You get told there, it wasn\u0026rsquo;t anything serious, but this turned out to be something entirely unexpected.\u0026rdquo; \u0026ndash; P5\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 9: \u0026ldquo;She told me everything was 100% fine, but she apologized several times during the conversation. She mentioned a lingering concern and asked if I wanted to go to [expert healthcare center]. I agreed, but was left wondering, if everything is truly fine, why the apologies? The next day, I was at the [expert healthcare center], and I was shocked. They immediately presented two pieces of paper with images and text and said: \u0026lsquo;This is the situation, and this is how we are going to do it.\u0026rsquo; All I could think was: \u0026lsquo;Wait, everything was 100% fine, right?\u0026rsquo;\u0026rdquo; \u0026ndash; P4\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariation in need for support from the FP\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 10: \u0026ldquo;Yes, then we could talk about what she knew, and just have a conversation, just being able to tell my story. I can do that with my Quote 11: husband as well, but she\u0026rsquo;s my FP, so I did find that quite sad.\u0026rdquo; \u0026ndash; P17\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I felt that at \u0026hellip; [expert healthcare hospital] there were a lot of people I could call, and they were all part of my treatment at that time. I could reach them right away, which was really helpful for me. And then I also didn\u0026rsquo;t have to explain the whole story again.\u0026rdquo; \u0026ndash; P12\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePreferred location\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariation in preferred healthcare center\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 12: \u0026ldquo;Such cooperation should go beyond. It\u0026rsquo;s strange that in \u0026hellip; [general hospital located on the geographical boundary of two oncological networks] they only have contact with \u0026hellip; [expert healthcare center], which I find unfortunate. In hindsight, I would have preferred \u0026hellip; (other expert healthcare center], because of the travel time and support from family. However, that option wasn\u0026rsquo;t possible, which I find very disappointing.\u0026rdquo; \u0026ndash; P18\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 13: \u0026ldquo;Expertise in \u0026hellip; [expert healthcare center], communication, the team that\u0026rsquo;s there and all the care is being closely together.\u0026rdquo; \u0026ndash; P14\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 14: \u0026ldquo;Well, if chemotherapy is at \u0026hellip; [expert healthcare center], then I would have to drive quite a distance each time. It\u0026rsquo;s definitely quite a long drive. [General hospital], can also provide the same treatment, that\u0026rsquo;s what they said in \u0026hellip;[expert healthcare center], so that\u0026rsquo;s right nearby.\u0026rdquo; \u0026ndash; P3\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariation in preferred healthcare center for follow-up care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 15: \u0026ldquo;I would prefer to go back to [general hospital], as it is just 10km away from here. Travel time plays a significant role for me.\u0026rdquo; \u0026ndash; P11\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 16: \u0026ldquo;Well, because they did the surgery, they are my doctors. And basically, they were directly involved and know exactly what the situation is. This way, there\u0026rsquo;s no risk of something being only partially carried over or misunderstood. So I don\u0026rsquo;t have that issue now, and it gives me a good feeling.\u0026rdquo; \u0026ndash; P18\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCoordination of oncological care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEfficiency of the referral process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 17: \u0026ldquo;I just had a safe feeling. Even though I struggled a little bit with the treatment, I always felt safe in \u0026hellip; [expert healthcare center]. It was a protected and well cared environment.\u0026rdquo; \u0026ndash; P13\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003eQuote 18: \u0026ldquo;A more rapid response is what I expected. Let me put it this way, of course it\u0026rsquo;s different when dealing with something like knee pain, but in case of pancreatic cancer, one of most aggressive forms of cancer, I believe quicker action is necessary. It just felt like the process took too long.\u0026rdquo; \u0026ndash; P14\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRepeated diagnostics at expert healthcare center\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 19: \u0026ldquo;Well, looking back, I had a very good feeling about it. At first, you think that they already have that information. But there were several weeks in between, so a lot of things could have been changed. And that\u0026rsquo;s what they said, so the process started all over again, but it was so fast. I was glad they took that approach.\u0026rdquo; \u0026ndash; P14\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEngagement of FP in trajectory\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eQuote 20: \u0026ldquo;I said, \u0026lsquo;I have no idea\u0026rsquo;, so I discussed it with my FP. It was a very helpful conversation. It really helped me in making a decision.\u0026rdquo; \u0026ndash; P14\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003e\u003cem\u003eFP: Family Physician\u003c/em\u003e\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section3\"\u003e \u003ch2\u003e3.1.1. Timely communication\u003c/h2\u003e \u003cdiv id=\"Sec10\" class=\"Section4\"\u003e \u003ch2\u003e3.1.1.1. Help and advice from expert healthcare professionals\u003c/h2\u003e \u003cp\u003eBefore a definitive diagnosis of pancreatic cancer, but when suspicion already existed, physicians in general healthcare centres sometimes reached for advice from expert healthcare physicians. This process was often facilitated through interdisciplinary consultations or multidisciplinary team meetings. Patients \u003cb\u003efelt confident when there was early engagement and communication between general and expert healthcare centres\u003c/b\u003e during the diagnostic phase (Quote 1).\u003c/p\u003e \u003cp\u003eHowever, during diagnostic uncertainty participants experienced that contact with the expert healthcare professionals for advice was late. Patients felt the \u003cb\u003econnection and communication between general and expert healthcare professionals was not sufficiently accessible\u003c/b\u003e. They would value it if physicians involved a expert healthcare centre earlier when there is suspicion of pancreatic cancer (Quote 2).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section4\"\u003e \u003ch2\u003e3.1.1.2. Information exchange between hospitals\u003c/h2\u003e \u003cp\u003ePatients experienced an \u003cb\u003eadequate and timely exchange of information between general and expert healthcare centres\u003c/b\u003e. When patients were referred to a expert healthcare centre and were seen shortly thereafter, the physicians already had access to complete medical records. Additionally, patients reported that the physicians were well-informed about their situation, allowing them to be well-prepared for new patients arriving at the outpatient clinic (Quote 3).\u003c/p\u003e \u003cp\u003eIn a few cases, patients experienced that \u003cb\u003ethe exchange of information between the second and expert healthcare centres was not optimal\u003c/b\u003e. This was mainly felt because physician at the expert healthcare centre was missing information (Quote 4).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section4\"\u003e \u003ch2\u003e3.1.1.3. Information exchange between expert healthcare centre to own FP\u003c/h2\u003e \u003cp\u003eWhen patients had appointments at their expert healthcare centre, treatment plans and appointments were often communicated to their FP. This allowed FP\u0026rsquo;s to become involved in the network. In most cases, patients experienced a \u003cb\u003egood transfer of information from their expert healthcare centre to their FP\u003c/b\u003e. Patients especially noticed this when the FP was already informed at the start of the conversation (Quote 5).\u003c/p\u003e \u003cp\u003eFew patients experienced \u003cb\u003einadequate transfer of information from their expert healthcare centre to their own FP\u003c/b\u003e, particularly regarding speed of information. This led to some frustration with participants (Quote 6).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003e3.1.2. Patient expectations\u003c/h2\u003e \u003cdiv id=\"Sec14\" class=\"Section4\"\u003e \u003ch2\u003e3.1.2.1. Communication and explanation about the referral\u003c/h2\u003e \u003cp\u003eIn most cases, patients reported that they \u003cb\u003ereceived a clear explanation from their physician about the referral to the expert healthcare centre.\u003c/b\u003e Due to this thorough communication, the reason for the referral was understandable, allowing patients to have clear expectations of what would occur at the expert healthcare centre (Quote 7). These elements contributed to fostering trust in upcoming consultations at the expert healthcare centre.\u003c/p\u003e \u003cp\u003eIn some cases, patients mentioned that \u003cb\u003eexplanation regarding the referral from general to expert care was insufficient\u003c/b\u003e. Particularly, the reason for referral was unclear to patients. In some cases, this caused distress, particularly when the possibility of pancreatic cancer was suddenly considered at the expert healthcare centre (Quote 8 \u0026amp; 9).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section4\"\u003e \u003ch2\u003e3.1.2.2. Variation in need for support of the FP \u0026ldquo;\u003c/h2\u003e \u003cp\u003eSome patients experienced a \u003cb\u003eneed for support from the FP during their trajectory.\u003c/b\u003e This was primarily because they appreciated having someone to share their experiences with and felt the lack of an easily point of contact, which they typically associated with the FP\u0026rsquo;s role (Quote 10).\u003c/p\u003e \u003cp\u003eOther patients \u003cb\u003efelt no need for support from their FP\u003c/b\u003e. This was often due to a pre-existing distant relationship with their FP or because they felt adequately supported by healthcare professionals in their hospital (Quote 11).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section3\"\u003e \u003ch2\u003e3.1.3. Preferred location\u003c/h2\u003e \u003cdiv id=\"Sec17\" class=\"Section4\"\u003e \u003ch2\u003e3.1.3.1. Variation in preferred healthcare centre\u003c/h2\u003e \u003cp\u003eThere were various patient experiences regarding \u003cb\u003ethe preferred location\u003c/b\u003e for surgical treatment. For instance, one patient indicated a desire to be referred to a different expert healthcare centre due to the proximity of family in that region. However, boundaries of oncological networks did not allow patients to be referred to a different network from their general healthcare centre (Quote 12).\u003c/p\u003e \u003cp\u003eRegarding the preferred location of (neo)adjuvant chemotherapy, various opinions were identified. Some individuals \u003cb\u003epreferred (neo)adjuvant chemotherapy at the expert healthcare centre\u003c/b\u003e because they highly valued the convenience of receiving all care at a single location and had confidence in the expertise (Quote 13).\u003c/p\u003e \u003cp\u003eOthers had \u003cb\u003epositive experiences receiving (neo)adjuvant chemotherapy at general healthcare centres\u003c/b\u003e due to shorter travel times and lower costs for travel (Quote 14).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section4\"\u003e \u003ch2\u003e3.1.3.2. Variation in preferred healthcare centre for follow-up care\u003c/h2\u003e \u003cp\u003eFollow-up care for patients may also be provided at various locations. The preferred setting of follow-up care could be in their general healthcare centre, but also in their expert healthcare centre. Patients\u0026rsquo; preferences regarding the location of their follow-up care were consistent with their preferences for receiving (neo)adjuvant chemotherapy. \u003cb\u003eTravel distance and the need for specialized expertise determined preferences for location of follow-up care\u003c/b\u003e (Quote 15).\u003c/p\u003e \u003cp\u003eAdditionally, specifically for follow-up care, patients expressed a preference to have the same physician (Quote 16). Patients reported \u003cb\u003efeeling comforted when they were able to continue with the same physician in their follow-up care.\u003c/b\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section3\"\u003e \u003ch2\u003e3.1.4. Coordination of oncological care\u003c/h2\u003e \u003cdiv id=\"Sec20\" class=\"Section4\"\u003e \u003ch2\u003e3.1.4.1 Efficiency of the referral process\u003c/h2\u003e \u003cp\u003ePatients generally reported good experiences with referrals to expert healthcare centres. They often perceived that expert healthcare centres \u003cb\u003eprovided a feeling of safety and confidence\u003c/b\u003e (Quote 17).\u003c/p\u003e \u003cp\u003eA single participant experienced that \u003cb\u003ethe referral to the expert healthcare centre was too late.\u003c/b\u003e This resulted in feelings of slight frustration and a sense of insufficient urgency (Quote 18).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section4\"\u003e \u003ch2\u003e3.1.4.2 Repeated diagnostics at expert centre\u003c/h2\u003e \u003cp\u003ePatients who underwent \u003cb\u003erepeated diagnostics at the expert healthcare centre often mentioned feeling no inconvenience\u003c/b\u003e. Instead, they experienced a sense of safety, as it may be of higher quality, more up-to-date, and they were provided with additional information (Quote 19).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section4\"\u003e \u003ch2\u003e3.1.4.3 Engagement of FP in trajectory\u003c/h2\u003e \u003cp\u003ePatients had diverse experiences regarding engagement of the FP. This role differed among patients, ranging from minimal contact to highly involved FP\u0026rsquo;s throughout the entire care trajectory. Some patients \u003cb\u003eexperienced positive experiences when their FP was actively engaged throughout the whole trajectory\u003c/b\u003e. This involvement included the FP initiating contact to check about the patient\u0026rsquo;s well-being of if any aid was needed, whether through phone calls or home visits (Quote 20).\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eThis study provides insights into the experiences of patients with pancreatic cancer within CCNs and found four themes, focusing on timely communication, expectations, location of care and coordination of care. It highlights the importance of communication of the treatment process and early collaboration to build trust and reduce stress. While most patients reported positive experiences with referrals and information exchange, some experienced unclear referral reasons. Patients' preferences for location of oncological treatment and follow-up care were balanced between expertise of expert healthcare centres and convenience of care in general healthcare centres due to travel time and costs. Additionally, patients had varying needs for roles of FPs within CCNs. Timely advise and information exchange, clear expectations upon referral, taking account preferences of location and seamless coordination of care with engagement of FPs contributes to the experience of person-centred care.\u003c/p\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003e4.1. Comparison with previous literature\u003c/h2\u003e \u003cp\u003eThe critical role of clear communication and early collaboration between general and expert healthcare centres during the diagnostic phase, as identified in our study, increases confidence and trust when these interactions happen promptly. This is also observed in the study by Hopstaken et al. (2021), who emphasized the importance of inter-organizational communication in ensuring continuity of care within CCNs for pancreatic cancer[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWith regard to expectations upon referral to an expert centre, studies confirm that sometimes patients are unaware of what to expect in the expert hospital. Patients are even unaware of the cancer diagnosis when being referred to the expert healthcare centre[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. These insights suggest that clear communication and well-functioning referral processes remain essential for enhancing patient experiences in CCNs[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWe identified that there is a variation in engagement of FPs, which points out that there are persistent difficulties in fully integrating FPs within CCNs. Abma et al. (2022) highlight the FP\u0026rsquo;s crucial role as a consistent and trusted figure throughout the care trajectory, providing continuity of care and psychological support[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. The current study supports these findings, as some patients valued their FPs involvement, particularly for emotional and practical guidance. Additionally, research by Sarfo et al. (2023) emphasize the crucial role that FPs play in guiding cancer patients. Their involvement contributes to reducing patient anxiety and fosters a sense of stability throughout the process[\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. These findings underline the necessity of clearly defining the FPs role within the network, to ensure that care is aligned with patients\u0026rsquo; needs and preferences.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec25\" class=\"Section2\"\u003e \u003ch2\u003e4.2. Strengths and limitations\u003c/h2\u003e \u003cp\u003eThis study has several notable strengths. First, in-depth insights gained through qualitative methods are a key strength. Exploration of patients' experiences within CCNs, particularly regarding referrals and hospital collaboration, provides a thorough understanding of this complex issue. Semi-structured interviews further enhance the study, allowing flexibility to explore personal experiences in more depth, resulting in rich, diverse data. Furthermore, the diversity of participants from two oncology networks improves transferability, as it allows for a broader range of perspectives that may be applicable to similar contexts.\u003c/p\u003e \u003cp\u003eAn additional methodological strength is achieving data saturation. No new themes emerged in final interviews, indicating a comprehensive understanding of the topic. Finally, this study explores a gap in literature by exploring patient experiences in CCNs, a relatively unexplored area.\u003c/p\u003e \u003cp\u003eDespite strengths, this study has some limitations. There is a potential selection bias in this study, as the participant group consists of patients with pancreatic cancer who are still alive and have a life expectancy of more than three months. This is a limitation, as patients who have already passed away could not be included, and their experiences were not captured. To address this limitation in future research, participants could be included shortly after diagnosis, rather than waiting until three months after the start of treatment. Additionally, in the case of interviewing relatives in subsequent studies could provide valuable insights into both the experiences of patients, and perspectives of relatives of both living and deceased patients. Furthermore, difficulties in patient inclusion arose due to different recruitment processes between hospitals. CCN A was dependent on the incidence of patients for follow-up that met inclusion criteria. In contrast, CCN B offered a quicker access to eligible patients based on patients characteristics, allowing smoother recruitment. This resulted in the inclusion of seven participants in CCN A and twelve participants in CCN B. This represents a slight imbalance in the sample, which may affect transferability of findings. However, both CCN\u0026rsquo;s have in common that they are young, only 12 and 5 years since formalisation of the networks, which may be too short for CCN\u0026rsquo;s to impact patients experience.\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Conclusion","content":"\u003cp\u003eIn conclusion, this study highlights the importance of clear communication and timely collaboration between general and expert healthcare centres, supported by effective information exchange for patients with pancreatic cancer. Additionally, person-centred care plays a key role in addressing the diverse needs of patients, particularly regarding location of care and involvement of FPs within CCNs.\u003c/p\u003e \u003cp\u003eThis study provides insights to enhance patient-centered care in CCNs. By addressing communication gaps, clarifying referral expectations, and integrating family physicians, CCNs can better align care delivery with patient values and preferences. These findings can be integrated into clinical practice to foster further development of collaboration between healthcare professionals in the treatment of patients with pancreatic cancer. While this study focused on patients with pancreatic cancer, the conclusions may be translated to other patient groups with different forms of cancer or complex diseases, requiring intensive treatment in a regional network.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCCN\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Comprehensive Cancer Network\u003c/p\u003e\n\u003cp\u003eFP\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Family Physician\u003c/p\u003e\n\u003cp\u003eLAPC\u0026nbsp; \u0026nbsp; \u0026nbsp;Locally advanced pancreatic cancer\u003c/p\u003e\n\u003cp\u003eBRPC\u0026nbsp; \u0026nbsp; \u0026nbsp;Borderline resectable pancreatic cancer\u003c/p\u003e\n"},{"header":"Declarations","content":"\u003ch2\u003eEthical approval statement and consent to publication\u003c/h2\u003e\n\u003cp\u003e\u003cem\u003eEthical approval is not required for this type of study under Dutch law. An exemption was obtained from the local Medical Ethics Committee CMO Regio Arnhem-Nijmegen (file number 2023-16390). All procedures performed in this study involving participants were conducted in accordance with the Declaration of Helsinki.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWritten informed consent was obtained from all participants prior to participation in the study, including consent for audio recording. Participation was voluntary, and participants were informed of their right to withdraw at any time without consequence.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003ch2\u003eConsent for publication\u003c/h2\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003ch2\u003e\u003cstrong\u003eAvailability of data and materials statement\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eThe data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to restrictions e.g. their containing information that could compromise the privacy of research participants and the involved CCNs.\u003c/p\u003e\n\u003ch2\u003eCompeting interests\u003c/h2\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003ch2\u003eFunding\u003c/h2\u003e\n\u003cp\u003eThis study was supported by an internal grant from the Radboudumc, which funded a multidisciplinary research group of the science department IQ Health. The goal was to study value of complex care networks for patients. The funding body had no role in the study design, execution, analysis, interpretation of the data or the decision to publish results. The funding body had no role in the writing of this manuscript.\u003c/p\u003e\n\u003ch2\u003eAuthors\u0026apos; contributions\u003c/h2\u003e\n\u003cp\u003eJB, MB, CV, SM, PW, MK, and RH contributed to the conceptualization of the study. JB, MB and CV were responsible for data curation and formal analysis. JB, MB, CV, SM, PW, MK, and RH contributed to the methodology. SB, SO, SM, PW, and MK contributed resources and validation. SM, PW, MK, and RH supervised the study. JB, MB and CV wrote the original draft of the manuscript. JB, MB, CV, SB, SO, SM, MK, and RH contributed to reviewing and editing the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003ch2\u003eAcknowledgements\u003c/h2\u003e\n\u003cp\u003eWe acknowledge our collaboration to Onco-Oost and OncoZon, both regional CCNs, for their participation in research project. Onco-Oost and Onco-ZON had no role in the study design, execution, analysis, interpretation of the data or writing of the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eKanno A, Masamune A, Hanada K, Maguchi H, Shimizu Y, Ueki T, et al. Multicenter study of early pancreatic cancer in Japan. 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J Cancer Surviv. 2023;17:416\u0026ndash;24. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1007/s11764-022-01211-1\u003c/span\u003e\u003cspan address=\"10.1007/s11764-022-01211-1\" 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":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Pancreatic Cancer, Continuity of Care, Patient experience, Primary care/Primary health care, Comprehensive Cancer Network","lastPublishedDoi":"10.21203/rs.3.rs-9113970/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9113970/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e \u003cp\u003ePatient-centered care in pancreatic cancer often involves complex coordination across Comprehensive Cancer Networks (CCNs). While CCNs aim to ensure equal access to expert care, little is known about how these structures affect patient experiences. This qualitative study explores patient perspectives to inform strategies for enhancing person-centered care in CCNs.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003eIn this qualitative study used semi-structured interviews were conducted with 19 patients diagnosed with pancreatic cancer, who were referred for treatment with curative intent within two CCNs in the Netherlands. Semi-structured interviews explored patient experiences. Interview topics involved experiences of referrals and collaboration between hospitals and the role of FPs within CCNs. Thematic content analysis was performed.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003eFour themes were identified: timely communication, patient expectations, preferred location, and coordination of oncological care. Patients reported positive experiences with timely communication upon referral and with advice for general healthcare centres from expert healthcare centres. Patients missed clear expectations from general healthcare centres upon referral. Personal preferences for the location of oncological treatment and follow-up care were dependent on factors as travel distance and trust in expertise. Patients felt safe with a referral to expert healthcare centres experienced and patients experienced variation in the engagement of FPs within CCNs.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusions\u003c/b\u003e\u003c/p\u003e \u003cp\u003eThis study provides valuable contributions to enhancing person-centred care within oncological networks. These findings can be applied in clinical practice to foster the further development of collaboration between hospitals and connected FPs in CCNs.\u003c/p\u003e","manuscriptTitle":"Patient Experiences of Oncological Care in Comprehensive Cancer Networks: A Qualitative Study in Pancreatic Cancer","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-30 14:46:56","doi":"10.21203/rs.3.rs-9113970/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-05-14T09:25:24+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-05-10T15:17:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"87014952081865900171907871329258974358","date":"2026-05-06T08:21:58+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-30T13:45:40+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-28T21:21:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"334001256823498696114736326153021544018","date":"2026-04-28T20:50:29+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"21076210310432269382587451996322070658","date":"2026-04-28T11:51:33+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"162687727827343950863233664487323828232","date":"2026-04-21T17:10:27+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-21T16:15:03+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-04-20T09:08:08+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-27T18:33:47+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-27T16:52:21+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-03-27T16:47:05+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"c4fb900e-e385-4ece-ab84-a9f49a1df040","owner":[],"postedDate":"April 30th, 2026","published":true,"recentEditorialEvents":[{"type":"editorInvitedReview","content":"","date":"2026-05-14T09:25:24+00:00","index":81,"fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-05-10T15:17:13+00:00","index":80,"fulltext":""},{"type":"reviewerAgreed","content":"87014952081865900171907871329258974358","date":"2026-05-06T08:21:58+00:00","index":79,"fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-30T13:45:40+00:00","index":78,"fulltext":""}],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-30T14:46:57+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-30 14:46:56","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9113970","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9113970","identity":"rs-9113970","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}