Satisfaction with follow-up consultations among Swiss childhood cancer survivors: a prospective cohort study

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Data may be preliminary. 24 September 2025 V1 Latest version Share on Satisfaction with follow-up consultations among Swiss childhood cancer survivors: a prospective cohort study Authors : Sara Buchmüller , Sonja Kälin , Martina Ospelt , Katharina Roser , Maria Boesing 0000-0001-8605-1893 , Gisela Michel 0000-0002-9589-0928 , Carole E. Aubert , Jörg D. Leuppi , Maria M. Wertli , and Eva Tinner 0000-0001-5843-8097 [email protected] Authors Info & Affiliations https://doi.org/10.22541/au.175872252.22541835/v1 242 views 154 downloads Contents Abstract Introduction Methods Results Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract Background: Late effects are frequent among adult childhood cancer survivors (ACCS), highlighting the importance of long-term follow-up (LTFU) care. This study aimed to examine satisfaction and worries of ACCS after their first visit to dedicated LTFU clinics, and to identify factors associated with satisfaction and worries. Methods: Eligible participants were ACCS (>18 years) entering LTFU care at one of two Swiss outpatient clinics. Prior to their first visit and three months after the visit, participants completed a set of questionnaires. Satisfaction after the visit was assessed in three domains: patient-centered care, information dissemination, and worries, with scores ranging from 1 to 4. For each scale, a mean score was calculated. We used univariable and multivariable regression analyses to assess the association between participant characteristics and outcomes. Results: A total of 145 ACCS were included in the study. Satisfaction was very high, with mean scores of 3.77 (SD = 0.28, range = 2.75–4.00) for patient-centered care and 3.58 (SD = 0.33, range = 1.78–4.00) for information dissemination. Moderate worries were reported (M = 2.02, SD = 0.71, range = 1.00–3.67). Discussing a higher proportion of wished topics during the visit was significantly associated with greater satisfaction with patient-centered care (p=0.011). Lower mental HRQoL was significantly associated with increased worries (p=0.032). Conclusions: Satisfaction with LTFU visits was generally very high, with desired discussion topics being an important determinant. ACCS with lower mental HRQoL may benefit from additional guidance and psychological support to mitigate worries following FU care visits. Satisfaction with follow-up consultations among Swiss childhood cancer survivors: a prospective cohort study Sara Buchmüller 1 §, Sonja Kälin 2 §, Martina Ospelt 2 , Katharina Roser 2 , Maria Boesing 3 , Gisela Michel 2 , Carole E. Aubert 1,4 , Jörg D. Leuppi 3 , Maria M. Wertli 1, 5 #, Eva Maria Tinner 3,6 #, §Shared first authorship: equal contribution #Shared last authorship: equal contribution Affiliations: 1. Department of General Internal Medicine, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland 2. Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland 3. University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland; and Medical Faculty University of Basel, Basel, Switzerland 4. Institute for Primary Healthcare (BIHAM), University of Bern, Bern, Switzerland 5. Department of Internal Medicine, Cantonal Hospital Baden, Baden, Switzerland 6. Department of Paediatric Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland Corresponding author: Dr. med. Eva Maria Tinner, Institute of Internal Medicine, Cantonal Hospital Baselland, Mühlemattstrasse 26, 4410 Liestal, Switzerland; [email protected] ; ORCID 0000-0001-5843-8097 Abstract word count: 249 Main text word count: 3490 Number of tables: 3 Number of figures: 2 Number of supporting information files: 1 Short title: Childhood Cancer Survivors: Satisfaction with follow-up Keywords: childhood cancer survivor, long-term follow-up, patient-reported outcomes Abbreviation key table COG-LTFU Children’s Oncology Group LTFU HRQoL Health-related quality of life KSBL Cantonal Hospital Baselland (Kantonsspital Baselland) FU follow-up LTFU Long-term follow-up PfC Passport for Care ABSTRACT Background: Late effects are frequent among adult childhood cancer survivors (ACCS), highlighting the importance of long-term follow-up (LTFU) care. This study aimed to examine satisfaction and worries of ACCS after their first visit to dedicated LTFU clinics, and to identify factors associated with satisfaction and worries. Methods: Eligible participants were ACCS (>18 years) entering LTFU care at one of two Swiss outpatient clinics. Prior to their first visit and three months after the visit, participants completed a set of questionnaires. Satisfaction after the visit was assessed in three domains: patient-centered care, information dissemination, and worries, with scores ranging from 1 to 4. For each scale, a mean score was calculated. We used univariable and multivariable regression analyses to assess the association between participant characteristics and outcomes. Results: A total of 145 ACCS were included in the study. Satisfaction was very high, with mean scores of 3.77 (SD = 0.28, range = 2.75–4.00) for patient-centered care and 3.58 (SD = 0.33, range = 1.78–4.00) for information dissemination. Moderate worries were reported (M = 2.02, SD = 0.71, range = 1.00–3.67). Discussing a higher proportion of wished topics during the visit was significantly associated with greater satisfaction with patient-centered care (p=0.011). Lower mental HRQoL was significantly associated with increased worries (p=0.032). Conclusions: Satisfaction with LTFU visits was generally very high, with desired discussion topics being an important determinant. ACCS with lower mental HRQoL may benefit from additional guidance and psychological support to mitigate worries following FU care visits. Introduction Most adult childhood cancer survivors (ACCS) experience late effects resulting from their oncological disease and its treatment 1 , making specialized long-term follow-up (LTFU) care crucial . While survival rates have improved, they often come at a high cost, as late effects manifest in various and sometimes severe forms. The most frequently reported medical conditions involve the cardiovascular and endocrine systems 1,2 . ACCS also face an increased risk of developing secondary malignancies compared to peers without a history of childhood cancer 1,2 . In addition to medical late effects, some ACCS are at increased risk for psychosocial late effects, such as anxiety or post-traumatic stress disorder, with specific age- and treatment-related factors being linked to poorer outcomes 3 . To identify late effects of childhood cancer and provide necessary support, LTFU care for childhood cancer survivors is essential. Individualized LTFU aims not only to reduce mortality and morbidity through early detection of late effects and optimized management of chronic toxicities 4 , but also to enhance quality of life 5 . Different guidelines outline the core components of LTFU care 6 , with the most comprehensive being the Children’s Oncology Group LTFU (COG-LTFU) guidelines, which are tailored to the specific treatments each survivor has received 7 . The individualized FU plan is documented in a survivorship passport, such as the Passport for care ® (PfC) 8 . To improve the health of ACCS and reduce the long-term late effects of cancer and its treatment, it is essential to ensure ACCS’ continued participation in LTFU care. Sustained participation may be supported by fostering patient satisfaction, addressing worries, and offering individualized care. Previous studies indicated that factors such as the number of topics discussed during consultations, access to psychosocial support, shorter waiting times, and longer consultations were positively associated with patient satisfaction 9,10 . Since satisfaction may influence adherence to LTFU care, systematically gathering patient feedback is essential to evaluate whether care is meeting ACCS’ needs. Such insights are important for tailoring LTFU care to the diverse needs of survivor groups and for identifying survivors potentially at risk for low satisfaction or increased worries. This study aimed to (1) assess satisfaction and worries following LTFU consultations among ACCS receiving specialized care at one of two Swiss clinics (Liestal or Bern), and (2) identify sociodemographic, cancer-related, consultation-related, and psychosocial characteristics associated with satisfaction and worries. Methods Study design, setting, and population This study is part of a larger prospective cohort project on ACCS receiving LTFU care at clinics in Liestal or Bern. More detailed information about the cohort and the LTFU outpatient clinics has been published previously 11,12 . In Switzerland, several healthcare centers have recently established systematic LTFU care 13 , implementing it through a range of care models 14 . At the Cantonal Hospital of Baselland (KSBL) in Liestal and at Bern University Hospital (Inselspital), LTFU programs for ACCS were launched in 2017 and 2018, respectively. These programs are based on the collaboration between internists and pediatric oncologists. Oncological records are reviewed to create individualized FU plans in accordance with the COG-LTFU guidelines. The plans are documented in the PfC, and LTFU is organized based on the specific needs of each ACCS 11 . Referrals to the LTFU clinics occurred through multiple pathways, including direct transition from pediatric oncology (mainly in Bern), referrals from pediatric oncologists, general practitioners, and pediatric FU clinics, as well as self-registration, often prompted by awareness gained through the Cardiac Care for Survivors Study or survivor networks. LTFU consultations were conducted by experienced internists, in line with FU guidelines from pediatric oncologists. Data for this study were collected between 2017 and 2023 using the secure data management system REDCap (Research Electronic Data Capture; https://projectredcap.org/). The reporting of this study adheres to the STROBE guidelines for reporting cohort studies 15 . The study was conducted in accordance with the Declaration of Helsinki, and approved by ethics committee Bern (KEK BE) and under the lead of the ethical committee of northwestern and central Switzerland (EKNZ) with the number 2017-00109. All ACCS attending a LTFU consultation were invited to participate. Eligibility criteria The current study included all ACCS aged 18 years or older who received LTFU care at the clinics in Liestal or Bern, were diagnosed with cancer before age 20 according to the International Classification of Childhood Cancer—Third Edition (ICCC-3) 16 , and provided informed consent. Exclusion criteria were age <18 years at first visit and lack of consent. Procedure ACCS participating in the study were asked to complete three questionnaires (Fig. 1). Two were administered prior to the scheduled LTFU visit: the first one (Questionnaire 1), sent to the participants approximately three months before the visit, assessed patient characteristics and health status; the second one (Questionnaire 2), sent to the patients two to four weeks before the visit, evaluated expectations for LTFU. The third questionnaire (Questionnaire 3) was sent to the patients three months after the visit to evaluate the LTFU visit in terms of satisfaction, topics discussed, and worries. Prior to the initial visit, a personalized PfC was created for each ACCS, based on their cancer diagnosis and treatment history 8 . The PfC serves as an individualized FU plan with procedures and recommendations. The LTFU visit included medical history, physical examination, and, if needed, referrals to specialists or additional diagnostic testing. During the visit, ACCS received verbal and written information on their personal long-term health risks. Outcome measures Satisfaction and worries were assessed after the visit using Questionnaire 3, which included the Princess Margaret Hospital Patient Satisfaction with Doctor Questionnaire (PMH/PSQ-MD) 17 . This questionnaire comprises 29 items and was developed to evaluate outpatient satisfaction in oncology settings. It has been applied in similar studies to assess patient satisfaction 18–20 . For the present study, the questionnaire was translated into German, culturally adapted to the Swiss context, and modified by removing the ”does not apply” response option. To supplement the original questionnaire’s single item on worries (“After my visit to the doctor, I feel much better about my concerns”), two additional items were created by the authors: “Since the consultation, I am more concerned about my health than before” and “Since the consultation at the clinic, my fears are greater than before”. All items were rated on a 4-point Likert-scale (1=exactly true, 2=quite true, 3=rather not true, 4=not true at all). Two ACCS representatives reviewed the German draft of the questionnaire, and their feedback was incorporated. Reverse scoring was applied where necessary so that higher scores consistently reflected greater satisfaction and worries. Two additionally added open-ended items were excluded in the present analyses but were analyzed and reported in a separate publication 12 . To construct the questionnaire scales, a principal component analysis was conducted based on the items of the adapted PMH/PSQ-MD questionnaire. Three factors were extracted and used as dependent variables: “patient-centered care” (mean of 12 items; Cronbach’s alpha = 0.73), “information dissemination” (mean of 9 items; Cronbach’s alpha = 0.73) and “worries” (mean of 3 items; Cronbach’s alpha = 0.81). For further details on the PCA procedure and items exclusion, see the supporting information file part A. Covariates Sociodemographic data were collected in Questionnaire 1 and included gender, age at the time of the LTFU visit, age at diagnosis, and migration background (defined as not holding Swiss citizenship, not being a Swiss citizen since birth, or not being born in Switzerland). Cancer-related characteristics Cancer diagnoses, current health problems, and treatment intensity were derived from physicians’ reports. Cancer diagnoses were categorized according to the International Classification of Childhood Cancer, Third edition (ICCC-3). The total number of current health problems experienced by each survivor was a count variable for each participant. Treatment was classified based on treatment intensity, following Oeffinger et al. 21 : ACCS were categorized as high risk if they had received mantle or chest radiation, anthracyclines at cumulative doses ≥ 300 mg/m², bleomycin, ifosfamide, or etoposide; all others were classified as low risk 22 . Subjective vulnerability for late effects was assessed by asking ACCS to rate, on a slider scale from 0 to 100%, how likely they believed they were to experience late effects in the future. Consultation-related characteristics Number of topics wished to be discussed were assessed in Questionnaire 2 before the LTFU visit. ACCS rated their wish to discuss nine predefined topics (e.g., health status, health behavior, contraception; full list in supporting information file part B) on a 5-point Likert scale 19 . Responses of “agree”/“very much agree” were classified as wished , and “do not agree”/“do not agree at all” as not wished ; neutral responses (“neither agree nor disagree”) were excluded. Wished topics actually discussed were assessed three months after the visit in Questionnaire 3, when participants indicated which of the previously listed topics were actually discussed during their LTFU consultation. A wish was considered fulfilled when a wished-for topic was reported as discussed, and a percentage score was calculated for each participant representing the ratio of fulfilled wishes to total wishes. Motivation for LTFU was assessed prior to the visit in Questionnaire 2 and was measured using nine items rated on a 5-point Likert scale (1 = not at all important to 5 = very important). Based on previous research 23 , two scales were created: clinical care (mean of five items: confirmation of current health, reassurance of no recurrence, healthy lifestyle advice, best possible care, and information on late effects) and supportive care (mean of three items: psychological/emotional support, advice for daily life, and exchange with a professional familiar with the survivor’s medical history). Cronbach’s alpha was 0.76 for the clinical care scale and 0.73 for the supportive care scale. Psychosocial characteristics HRQoL was assessed prior to the visit in Questionnaire 1 using the Short Form-36 version 2 (SF-36v2), which evaluates physical and mental HRQoL across eight health domains 24–26 . Two summary scores were derived: the physical component score and the mental component score, with higher values indicating better HRQoL. Scoring was based on normative data from the Swiss general population and expressed as T-scores (mean = 50, SD = 10) 25,27 . Processing of health information was assessed in Questionnaire 2 using a modified version of the Threatening Medical Situations Inventory (TMSI) 28 , measuring two behavioral tendencies: monitoring (i.e. seeking information about potentially dangerous/painful medical situations) and blunting (i.e. distracting oneself from threatening situations or information). Participants rated six items (three per behavioral tendency) across four clinical scenarios on a 5-point Likert-scale (1= I would definitely not do that to 5= I would definitely do that). The monitoring and blunting scores were calculated by summing the respective item responses, following the procedure described by Michel et al. 19 A composite score (monitoring minus blunting) was calculated, and participants were dichotomized into monitors or blunters using a cut-off of 0. Statistical analyses For the sample description (aim 1), we used descriptive statistics, presenting categorical variables as absolute numbers and percentages and continuous variables as mean values with standard deviation (SD). To address aim 2, identifying factors associated with satisfaction and worries, univariable and multivariable linear regression analyses were performed. Variables significantly associated with satisfaction and worries in the univariable analysis ( p < 0.05) were included in the multivariable model. Statistical analyses were performed using Stata, Version 18.0 29 . Given the wide range of response time after the visit (0.4 to 37.7 months), participants who responded more than 18 months after the visit were excluded from the construction of the variables “number of topics wished to be discussed” and “wished topics actually discussed”, due to the risk of recall bias. For the main outcome measures satisfaction and worries, all responses of ACCS were included, as general feedback was considered robust regardless of response delay. Missing values were imputed in the adapted PMH/PSQ-MD, the motivation items, the SF-36v2, and for the blunting and monitoring score. Imputation was performed using the mean of the available items within each scale, provided that at least 50% of the items were completed 25 . Results Of the 189 eligible ACCS, 145 (73%) provided informed consent and completed Questionnaire 1. Of these, 109 (75%) also completed Questionnaire 2 prior to the LTFU visit, and 67 of them (46%) completed Questionnaire 3 after the visit. Additionally, 19 participants (13%) returned only Questionnaires 1 and 3 (Fig. 2). All ACCS who completed at least one questionnaire were included in the analyses. The characteristics of the study sample are shown in Table 1. Around two-thirds of ACCS (68.5%; N=98) received LTFU care in Bern. The sample included 60.7% (N=88) female participants. Initial cancer diagnoses were diverse, reflecting the distribution of cancer types observed in children and adolescents. Most frequent were ACCS of leukemia (30.3%; N=44). Mean age at diagnosis was 10.0 (SD=5.5; range: 4 months to just under 20 years). Over half of the participants received high intensity therapy (59.3%; N=86). Mean age at consultation was 31.5 years (SD=11.4; range: 18-62). A minority of the study population had a migration background (15.9%; N=22). On average, participants had 6.0 current health problems (SD=3.7; range: 0-16), and their subjective expected likelihood of potential future late effects was rated at 35.6% (SD=28.5; range: 0-100). Satisfaction was very high for both patient-centered care (mean=3.77, SD=0.28, range: 2.75-4.0; N=86) and information dissemination (mean=3.58, SD=0.33, range: 1.78-4.0; N=88). ACCS levels of worries after their LTFU visits were moderate (mean=2.02, SD=0.71, range=1-3.67, N=79). Factors associated with satisfaction Results for the univariable regression analyses can be found in Table 2. Multivariable regression models for satisfaction with patient-centered care and worries are shown in Table 3, including all variables that were significant in the univariable analyses. No multivariable regression analysis was conducted for the third outcome, information dissemination, as no significant associations were found in the univariable analyses. The overall multivariable regression model for satisfaction with patient-centered care was significant, F(4, 48)=6.11, p<0.001 , and explained 33.8% of the variance (R²=0.338). Receiving the consultation in Bern (compared to Liestal) was associated with higher satisfaction (B=0.18, 95% CI [0.05, 0.31], p =0.006). In addition, a higher percentage of wished topics discussed during the LTFU visit was positively associated with satisfaction (B=0.004, 95% CI [0.001, 0.007], p =0.011; N=53). The overall multivariable regression model for worries was also significant, F (7, 44)=2.82, p =0.016, and explained 31.0% of the variance ( R² =0.310). Lower mental HRQoL was significantly associated with increased worries (B=-0.02, 95% CI [-0.04, -0.002], p =0.032; N=52). Discussion This study examined satisfaction and worries of ACCS regarding LTFU consultations at two specialized clinics and their associated factors. Overall, satisfaction was very high, and addressing a higher number of wished topics was linked to greater satisfaction. However, ACCS also reported moderate worries. A significant association was observed between more worries and lower mental baseline HRQoL. Satisfaction in our study aligns with previous work reporting high levels of satisfaction with FU consultations 11,28,30 . Unlike earlier studies, we also assessed worries and found that they remained moderate after the consultation, underscoring the need for LTFU consultations to systematically address not only medical but also psychosocial concerns, particularly worries. This is consistent with prior research showing that cancer survivors expect psychological and emotional support to be an integral component of FU care 31 . Fear of cancer recurrence has been identified as a barrier to attending FU care 32 , however, this effect could not be examined in our study, as attendance occurred before worries were assessed. In the present study, location of care (Liestal vs. Bern) was associated with differences in satisfaction regarding patient-centered care. In contrast, a review of breast-cancer FU found that the location of care did not affect survivors’ positive attitudes toward FU, and psychological distress remained consistently high regardless of location of care. A possible explanation for the differing findings is the substantial variation in recruitment procedures between the two sites in our study. In Bern, most ACCS either transitioned passively from pediatric to adult care or were actively recruited into a cardio-oncology study based at the same institution and had already expressed interest in LTFU. In contrast, in Liestal, where there is currently no formal transition from pediatric oncology to LTFU care, all ACCS were motivated by intrinsic factors to attend FU care. Many of these survivors traveled long distances to attend the LTFU consultation, with high intrinsic motivation and possibly elevated expectations and hopes. However, these expectations were sometimes difficult to meet, as not all concerns (e.g. persistent fatigue) could be adequately addressed within the scope of a single consultation day. This discrepancy between high expectations and the limited possibilities of the visit likely contributed to the lower satisfaction ratings in Liestal compared to Bern as also discussed in previous research 33 . We found that a higher proportion of wished topics being addressed during the consultation was significantly associated with greater satisfaction. Similarly, studies by Absolom et al. 9 and Michel et al. 19 showed that the number of topics discussed during LTFU consultations correlated with increased satisfaction. However, these studies did not assess whether the topics discussed aligned with patients’ individual preferences. Our findings suggest that the alignment between discussed topics and survivors’ expectations may be an important factor contributing to satisfaction. Supporting this, a study from China, based on a random sample of hospital patients, identified patients’ expectations as the most influential psychosocial factor affecting satisfaction with care 34 . Interestingly, in our study, no significant predictors emerged for satisfaction with information dissemination. As information provision was tailored to individualized therapy and delivered by the same provider for all participants, this may have resulted in less variability in how it was perceived. In contrast, a previous study from Sheffield found that satisfaction with information exchange was higher among ACCS who had longer consultations, discussed more topics, and reported higher mental HRQoL 19 . None of the assessed sociodemographic or cancer-related characteristics were associated with either satisfaction or worries in our sample. These findings are consistent with a Canadian study on adult-onset cancer survivors, which found that neither cancer treatment nor sociodemographic factors were associated with satisfaction 28 . They identified good or very good quality of life and emotional health as important predictors of satisfaction 28 . In our study, we also explored the role of quality of life. While it was not associated with satisfaction, we found that lower mental HRQoL was significantly associated with higher levels of worries following the consultation, indicating that lower mental HRQoL may represent an important risk factor for increased worries. Clinical implications The primary aim of LTFU care is the early identification of cancer- and cancer-treatment-related late effects and health problems 4 . To achieve this, it is essential that survivors are motivated to attend LTFU visits. Patient satisfaction plays a crucial role in fostering such engagement, as does minimizing the emergence of worries related to FU care. Given that the level of worries was found to be moderate following LTFU visits in our study, explicitly addressing these concerns during consultations may help to alleviate them. ACCS who are at risk of elevated worry levels - particularly those with lower mental HRQoL - may benefit from targeted psychological support and additional resources. To further enhance satisfaction, we recommend that healthcare providers review survivor questionnaires prior to the LTFU visit, with particular attention to survivors’ preferences. This would enable a more tailored approach, ensuring that the consultation addresses the topics most important to each individual and places emphasis on their specific wishes and concerns. However, in the current Swiss healthcare system, preparatory work conducted prior to medical consultations is insufficiently reimbursed, posing a structural barrier to the implementation of such individualized care. Strengths and limitations A key strength of this study is the diversity of the survivor population which reflects the heterogeneity of the broader childhood cancer population, as well as the comprehensive cancer-related information available, including detailed treatment data. These factors enhance the robustness of the analyses and the relevance of the findings. However, several limitations should be considered when interpreting the results. First, the relatively small sample size limits statistical power and may reduce the ability to detect subtle effects. Second, ACCS were not actively recruited but either voluntarily sought specialized FU care or were referred by caregivers. This recruitment approach may have introduced selection bias, as those who chose to participate may differ systematically from those who did not. Third, the questionnaires used in this study were long and potentially burdensome, particularly for ACCS experiencing cognitive late effects. This may have further amplified selection bias by excluding individuals less able to complete the assessments. Fourth, the study included data from only two centers within a single healthcare system and country. This limited geographic and systemic scope may introduce center-specific biases and restrict the generalizability of the findings to other settings or healthcare contexts. Conclusion Although overall satisfaction with the LTFU visit was very high, some ACCS reported worries after their LTFU consultation, particularly those with lower mental HRQoL. These individuals may benefit from targeted psychological support. Satisfaction was not associated with sociodemographic or cancer-related characteristics but was related to whether ACCS felt their individual preferences and needs were taken into account during FU care. Future research should further examine how worries develop in response to LTFU visits and whether tailored interventions can reduce distress in vulnerable subgroups. Clinically, the findings highlight the importance of systematically addressing psychological well-being during LTFU visits and ensuring that care is tailored to individual needs and preferences. Declarations Funding: This work was supported by the science funds of the University Institute of Internal Medicine of the cantonal hospital Baselland (KSBL) (grant number: N/A), the Basel Region Childhood Cancer Foundation (grant number: #2020-F009) and the “Berner Stiftung für krebskranke Kinder und Jugendliche” (grant number: N/A). CEA was funded by the Swiss National Science Foundation (Ambizione Grant PZ00P3_201672). SK and MO were funded by the Swiss Cancer Research Foundation (Grant no. KFS-5384-08-2021). Ethical approval: The study was conducted in accordance with the Declaration of Helsinki, and approved by ethics committee Bern (KEK BE) under the lead of the ethical committee of northwestern and central Switzerland (EKNZ) with the number 2017-00109. Participants gave informed consent to participate in the study before taking part. Data availability: Data are available from the corresponding author upon reasonable request. Acknowledgements: We thank the ACCS participating in the study and the interdisciplinary teams at both study sites. Authors’ Contribution: SB substantially contributed to data acquisition, data preparation, and drafting of the manuscript, reviewing it critically for important intellectual content and approved the final version for publication. SK substantially contributed to the conception and design of the study, conducted the analysis and interpretation of results, contributed to the drafting of the manuscript, reviewing it critically for important intellectual content, and approved the final version for publication. MO and GM substantially contributed to the conception and design of the study, the interpretation of data, reviewing the manuscript critically for important intellectual content and approved the final version for publication. MB, KR, CEA and JL substantially contributed to the conception and design of the study, reviewing the manuscript critically for important intellectual content and approved the final version for publication. MMW and EMET substantially contributed to the conception and design of the study, the data acquisition, the interpretation of data, reviewing the manuscript critically for important intellectual content and approved the final version for publication. EMET additionally substantially contributed to the drafting of the manuscript and is the guarantor and full responsible for the overall content. 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Supplementary Material File (2025-09-23_accs satisfaction with follow-up_figures and tables.docx) Download 140.50 KB Information & Authors Information Version history V1 Version 1 24 September 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Keywords late effects of cancer treatment long term survival outcomes research pediatric hematology/oncology psychology psychosocial quality of life Authors Affiliations Sara Buchmüller Inselspital Universitatsspital Bern View all articles by this author Sonja Kälin Hochschule Luzern View all articles by this author Martina Ospelt University of Lucerne View all articles by this author Katharina Roser Hochschule Luzern View all articles by this author Maria Boesing 0000-0001-8605-1893 Kantonsspital Baselland View all articles by this author Gisela Michel 0000-0002-9589-0928 Hochschule Luzern View all articles by this author Carole E. Aubert Inselspital Universitatsspital Bern View all articles by this author Jörg D. 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