Preferences for long-term follow-up care in childhood cancer survivors

Preferences for follow-up care 1 Published in European Journal of Cancer Care 2016 (DOI: 10.1111/ecc.12560; final version before proof) Preferences for long-term follow-up care in childhood cancer survivors Gisela Michel (PhD)1,2, Micòl E. Gianinazzi (PhD)1, Christine Eiser (PhD)3, Eva Bergstraesser (MD MSc)4, Janine Vetsch (MSc)1, Nicolas von der Weid (MD)5, Claudia E. Kuehni (MD MSc)2 , For the Swiss Paediatric Oncology Group* 1 Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002 Lucerne, Switzerland 2 Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012 Bern, Switzerland 3 Department of Psychology, University of Sheffield, Western Bank, Sheffield S10 2TP, United Kingdom 4 Department of Paediatric Oncology, University Children's Hospital, Steinwiesstrasse 75, 8032 Zurich, Switzerland 5 University Children's Hospital beider Basel (UKBB), Spitalstrasse 33, Postfach, 4031 Basel, Switzerland * Swiss Paediatric Oncology Group (SPOG) Scientific Committee: Prof. Dr. med. R. Ammann, Bern; Dr. med. R. Angst, Aarau; Prof. Dr. med. M. Ansari, Geneva; PD Dr. med. M. Beck Popovic, Lausanne; Dr. med. P. Brazzola, Bellinzona; Dr. med. J. Greiner, St. Gallen; Prof. Dr. med. M. Grotzer, Zurich; Dr. med. H. Hengartner, St. Gallen; Prof. Dr. med. T. Kuehne, Basel; Prof. Dr. med. K. Leibundgut, Bern; Prof. Dr. med. F. Niggli, Zurich; PD Dr. med. J. Rischewski, Lucerne; Prof. Dr. med. N. von der Weid, Basel. Corresponding author: Gisela Michel, Department of Health Sciences and Health Policy, University of Lucerne Frohburgstrasse 3, 6002 Luzern, Switzerland Ph:+41 41 2295955, Fax: +41 41 2295635, E-mail: gisela.michel@unilu.ch Sources of support: This work was supported by the Swiss National Science Foundation (Ambizione grant PZ00P3_121682/1 and PZ00P3-141722 to GM; Grant 100019_153268 / 1). The Swiss Childhood Cancer Survivor Study was funded by the Swiss Cancer League (KLS-2215-02-2008, KFS-02631-08-2010, KLS-02783-02-2011). The work of the Swiss Childhood Cancer Registry is supported by the Swiss Paediatric Oncology Group (www.spog.ch), Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und –direktoren (www.gdk-cds.ch), Swiss Cancer Research (www.krebsforschung.ch), Kinderkrebshilfe Schweiz (www.kinderkrebshilfe.ch), Ernst-Göhner Stiftung, Stiftung Domarena and National Institute of Cancer Epidemiology and Registration (www.nicer.ch). Preferences for follow-up care 2 ABSTRACT Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late-effects. We aimed to describe preferences for different organisational aspects and models of followup care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4 point scales, 0-3). Clinical information was available from the SCCR. Survivors (n=314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p<0.001). They rated checking for cancer recurrence (mean=2.78, SD=0.53) and knowing about risks for my children most important (mean=2.22, SD=0.83). They preferred to attend a children’s hospital (mean=1.94, SD=1.11), adult hospital (mean=1.86, SD=0.98) or general practitioner (mean=1.86, SD=1.01) rather than a central specialised late effects clinic (mean=1.25, SD=1.06, p<0.001), and be seen by paediatric (mean=2.24, SD=0.72) or medical oncologist (mean=2.17, SD=0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors’ preferences should be considered to ensure future attendance. Keywords: oncology, survivors, aftercare, patient preference, organization INTRODUCTION Follow-up care is vital for many childhood cancer survivors due to the high risk of late effects (Geenen et al., 2007, Hudson et al., 2013, Oeffinger et al., 2006). Follow-up offers potential for early detection and treatment of late effects and an opportunity to offer ageappropriate information about disease, treatment and a healthy lifestyle, practical advice about insurance, education or work, and psychosocial support (von der Weid and Wagner, 2003, Gianinazzi et al., 2014, Vetsch et al., 2015). Published guidelines describe risk-based followup for childhood cancer survivors (Scottish Intercollegiate Guidelines Network (SIGN), 2004, Stichting Kinderoncologie Nederland (SKION), 2010, Children's Oncology Group, 2013), and evidence-based, risk-adapted examinations. Despite the potential advantages of follow-up, attendance is often low (Michel et al., 2011b, Rebholz et al., 2011, Essig et al., 2012). Previous studies highlighted the importance of assessing survivors’ views and preferences about follow-up care (Aslett et al., 2007, Earle et al., 2005, Michel et al., 2009) to ensure it is relevant to survivors and consequently associated with good attendance. However, little is known about survivors’ views of follow-up. They appear more interested in medical aspects of follow-up care such as checking for relapse, late effects and general health status, compared with gaining information about wider issues such as effects of cancer on employment or education, or health behaviour (Michel et al., 2009, Eiser et al., 1996). Organisational issues such as waiting time or length of consultation influenced satisfaction with care (Absolom et al., 2006). Other work has addressed preferences for different models of follow-up care (e.g. continuation of care with the paediatric oncologist, transfer to adult clinic or general practitioner (GP), or follow-up by telephone/questionnaire). Most survivors were satisfied with the care they received (Eiser et al., 1996, Michel et al., 2011a), and wished to continue this model of follow-up (paediatric or adult clinic) (Absolom et al., 2006, Michel et al., 2009). Two qualitative studies concluded that GP follow-up was convenient but survivors were not confident about GPs knowledge about survivorship-specific care (Zebrack et al., 2004, Earle et al., 2005). However, most studies only included survivors attending follow-up appointments and therefore may not be relevant when considering views of survivors who do not attend follow-up care for whatever reason. We aimed to describe 1) preferences for different organizational aspects and models of follow-up care among Swiss childhood cancer survivors Preferences for follow-up care 3 (including both current attenders and nonattenders to follow-up care), and 2) characteristics of survivors associated with preferences for different models of care. METHODS Sample and procedure The Swiss Childhood Cancer Registry (SCCR) is a population-based registry including all Swiss residents diagnosed before age 21 years with leukaemia, lymphoma, central nervous system (CNS) tumour, malignant solid tumour or Langerhans cell histiocytosis (Michel et al., 2007, Michel et al., 2008). The Swiss Childhood Cancer Survivor Study (SCCSS) is a nationwide, long-term follow-up study of all patients registered in the SCCR who were diagnosed between 1976-2005 and survived for ≥5 years (Kuehni et al., 2012a). For the baseline survey, between 2007-2009, all survivors aged older than 16 years at study received an information letter about the study from their treating institution. They were asked whether or not they wished to participate, their address, or if they required the baseline questionnaire in another language (German, French, and Italian). Two weeks later, all survivors received a paper-based questionnaire (baseline) with a prepaid return envelope. Nonresponders received another questionnaire after 2 months and then were contacted by phone if they did not respond. After approximately 3 years all participants who had completed the baseline questionnaire, were aged ≥18 years, and diagnosed with cancer at age ≤16 years between 1990-2005, received a follow-up questionnaire. Non-responders to this questionnaire were sent a reminder letter with a questionnaire and prepaid return envelope two months later. Because there were few Italian speaking participants, the second questionnaire was provided only in German and French. For the current study survivors whose parents completed the baseline questionnaire were excluded. Ethics approval was provided through the general cancer registry of the SCCR (The Swiss Federal Commission of Experts for Professional Secrecy in Medical Research) and a non obstat statement (the ethical committee did not object to the running of the study) was obtained from the ethics committee of the canton of Bern. Participants gave informed consent for the study by returning the completed questionnaire. The questionnaires The baseline questionnaire was based on those used in the US and UK childhood cancer survivor studies (Robison et al., 2002, Hawkins et al., 2008), and covered the following topics: quality of life, somatic health, current medication, health service utilization, psychological distress, health behaviour and socio-economic information. The focus of the follow-up questionnaire was follow-up care and psychological outcomes. Measurements Baseline questionnaire We assessed sex, migration background and selfreported late effects. We coded participants as having a migration background if they were not Swiss citizens, were not born in Switzerland, or at least one parent was not a Swiss citizen. We asked if survivors experience late effects from cancer or treatment (yes/no). Follow-up questionnaire Outcome measures: Follow-up attendance: We asked survivors if they still attended follow-up care (a) “I regularly attend follow-up”, b) “I irregularly attend follow-up”, c) “Follow-up is completed but I visit my treating doctor when I have questions”, d) “Follow-up is completed and I never visit my former treating doctor”. We coded (a) and (b) as attenders [1], and (c) and (d) as non-attenders [0]. Reasons for follow-up (Michel et al., 2009): Survivors rated the importance of different Preferences for follow-up care 4 reasons for attending follow-up (0=“not at all important” to 3=“very important”). Factor analysis revealed two scales: supportive care (get information about late effects, talk to staff who understand what I've been through, get advice about how to keep healthy, receive psychological support, get advice about everyday things) and clinical care (check the cancer has not come back, get reassurance about health, help clinic staff learn more about late effects, get the best medical care). Cronbach’s alpha in our sample indicated a good internal consistency for both scales: supportive care: α=0.80; clinical care α=0.69. What is important during appointments: Survivors rated the importance of 10 organisational aspects of follow-up appointments (0=“not at all important” to 3=“very important”): Competent staff, being taken seriously, relationship quality between doctor and patient, insurance reimbursement, doctor continuity across appointments, no long waiting times, regular appointments, short and efficient consultation, nurse continuity across appointments, meeting other survivors. What should be included in follow-up: We asked about the importance of four clinical aspects (check that cancer has not come back, screen for late effects, provide information on potential late effects, other medical follow-up) and eight general aspects of follow-up (risk of diseases for my children, psychological counselling, availability of alternative medicine, information/counselling about sexuality, information about education / job, exchange with other survivors, support in spiritual aspects of life, other offers). Each aspect was rated on a 4 point scale (0=“not at all important” to 3=“very important”). Who should be involved in follow-up: Survivors rated how personally important it is that different medical and other specialists are involved in follow-up (0=“not at all important” to 3=“very important”): paediatric oncologist, general practitioner (GP), medical oncologist, fertility counselling, gynaecologist, endocrinologist, psychologist/psychiatrist, specialist nurse, radiotherapies, nutritional counselling, physiotherapist, geneticist, insurance counselling, social worker, career counselling, other specialist) Where should follow-up be provided: We asked survivors’ agreement (0=“don’t agree at all” to 3=“completely agree”) about the place where they would like to attend follow-up: a) at the paediatric hospital, where they were treated, b) a hospital for adults, c) a central, specialised follow-up clinic, d) their GP. Preferences for models of follow-up care: We provided a short description of five different models of follow-up care: a) telephone/questionnaire based follow-up, b) GP follow-up, c) follow-up by paediatric oncologist who originally treated the patient, d) medical oncologist follow-up, e) hospital-based followup by a multidisciplinary team (MDT). For each model we asked survivors if this kind of followup would suit them, if they were afraid that health problems would not be detected, if they would not be satisfied with this kind of followup, and if they thought that this kind of followup was appropriate for their health (0=“don’t agree at all” to 3=“completely agree”). Two items were reverse coded such that a higher score indicated higher positive agreement for the respective model (0-3). We calculated the mean of the four items to indicate agreement with each model. For model e) we asked 4 additional items, which were analysed separately (I can contact all specialists I need, I can be referred to the right specialist, follow-up is less personal, I don’t know who is responsible for me). Socio-demographic characteristics and psychological distress: Psychological distress: We used the Brief Symptom Inventory-18 (BSI-18)(Derogatis, 2000) and calculated scores for somatisation, depression, anxiety, and a Global Severity Index (GSI). Survivors rated how much they experienced each symptom during the 7 previous days on a 5-point scale (1=”not at all” to 5=”extremely”). Scale scores were converted into T-scores (mean=50; standard deviation (SD)=10). We created a case-indicator specifying survivors with high distress (T≥57 on at least 2 scales or the GSI) (Zabora et al., 2001, Preferences for follow-up care 5 Gianinazzi et al., 2013). Cronbach’s α in our sample indicated a good internal consistency for all three scales and the GSI(somatization: α=0.78; depression: α=0.90; anxiety: α=0.80; GSI α=0.91). Educational achievement was coded as primary (compulsory schooling), secondary (vocational training or high school degree), and tertiary education (college or university degree) (Kuehni et al., 2012b). Employment was coded as “employed”, “in education” or “not employed”. Partnership was coded as not having a partner vs. being in a partnership. Age at study was coded into ≤25 years and >25 years. The language was coded into German and French. Data available from the SCCR Age at diagnosis was coded into 0-4 years, 5-9 years, 10+ years. Time since diagnosis was coded into 5-9 years, 10-14 years, 15+years. Diagnoses were classified according to the International Classification of Childhood Cancer-3rd edition) (Steliarova-Foucher et al., 2005). We recoded diagnoses into four major groups: leukaemia, lymphoma, CNS tumours and other solid tumours. Treatment was coded as surgery only, chemotherapy (without radiotherapy, may have had surgery), radiotherapy (may have had surgery and/or chemotherapy) and stem cell transplantation (SCT). Relapse and second malignancy were coded as yes/no. Analyses All analyses were performed using Stata 13.0 (StataCorp, College Station, TX). Numbers for each outcome vary because not all participants answered all questions. We used descriptive statistics and chi2-test to compare participants and non-participants in the study. To analyse aim 1 (preferences for different organizational aspects and models of follow-up care) we used means and proportions to describe different preferences for organizational aspects and models of follow-up care. Paired t-tests were used to compare the importance of clinical and supportive reasons, and as post-hoc test following Hotelling T-test for the comparison of more than two means. We used t-test and chi2- test to analyse differences in preferences between attenders and non-attenders to followup. To evaluate aim 2 (characteristics of survivors associated with preferences for different models of care), we used univariable and multivariable linear regression analyses using the mean satisfaction with each model of care as outcome. We ran separate regression analyses for each of the five described models of follow-up care. For multivariable regressions, we included all variables, which were significantly associated at p<0.05 in the univariable regressions for at least one of the follow-up models. RESULTS A total of 754 survivors were eligible for the follow-up questionnaire. We were able to contact 720 of these, and 314 were included in the study (43.6%; Figure 1). Participants’ characteristics are described in Table 1. Participants were more likely than non-participants to be female, and to have received radiotherapy, but less likely to have had surgery only. 1) Preferences for the organisation of followup care Of the 314 responders, 150 (47.8%) reported they still attended follow-up (Table 1). Reasons for follow-up: Clinical reasons (mean=2.33, SD=0.58) were more important than supportive reasons (mean=1.61, SD=0.71; p<0.001; Figure 2). Most important reasons for survivors to return were to Check that cancer has not come back (mean=2.53, SD=0.80) and seek reassurance about health (mean=2.44, SD=0.72); least important were to receive psychological support (mean=1.30, SD=1.02) and get advice about everyday things (mean=1.21, SD=1.00). What is important during appointments: Survivors reported that competent staff (mean=2.74, SD=0.47) and being taken seriously (mean=2.70, SD=0.49) were most important to them during appointments (Figure 3), and significantly more important than the relationship quality (mean=2.51, SD=0.64; p<0.001). Nurse continuity across appointments (mean=1.43, SD=0.92) and meet other survivors (mean=0.89, SD=0.83) were least important. Preferences for follow-up care 6 What should be included? When asked about clinical aspects that should be included in follow-up survivors agreed that checking for cancer recurrence (mean=2.78, SD=0.53) was most important (Figure 3), more than screening for late effects (mean=2.67, SD=0.53; p=0.001) and gaining information on potential late effects (mean=2.63, SD=0.55; p<0.001). Knowing about risks for my children (mean=2.22, SD=0.83) was rated as most important among general aspects. The possibilities for interaction with other survivors (mean=0.95, SD=0.86) and getting advice on spiritual things were rated as not important (mean=0.42, SD=0.66). Who should be involved: Paediatric oncologist (mean=2.26, SD=0.96), general practitioners (mean=2.10, SD=0.99) and medical oncologist (mean=2.07, SD=0.95) were rated as most important to be included in follow-up (Figure 3). Other specialists or counselling options such as nutritional counselling (mean=0.99, SD=0.90), physiotherapist (mean=0.99, SD=0.88), geneticist (mean=0.97, SD=0.96), insurance counselling (mean=0.89, SD=0.92), social worker (mean=0.74, SD=0.83), and career counselling (mean=0.69, SD=0.83) were considered less important. Where should follow-up be provided: Survivors showed no preference for place of follow-up (Figure 3): children’s hospital (mean=1.94, SD=1.11), adult hospital (mean=1.86, SD=0.98) or GP practice (mean=1.86, SD=1.01; no significant difference: for all p>0.05). A central specialised late effects clinic was rated least acceptable (mean=1.25, SD=1.06; compared to the three other clinics: p<0.001). There was little difference in preferences for follow-up between attenders and non-attenders to follow-up (Online Table 1). Attenders reported slightly higher preference for clinical reasons for follow-up (p=0.014), to get the best medical care (p=0.009), and to talk to staff who understood what they had been through (p=0.008). They also valued regular appointments (p<0.001) and information about education or work (p=0.001) higher than nonattenders. Attenders rated presence of endocrinologists (p=0.045) and other specialists (p=0.048) as more important than non-attenders. Preferred model of follow-up care: Survivors rated paediatric oncologist follow-up (mean=2.24, SD=0.72) and medical oncologist follow-up highest (mean=2.17, SD=0.69; p=0.087). Both these models were rated significantly higher than the other three models (all p<0.001, apart from medical oncologist compared to follow-up by multidisciplinary team [MDT]: p=0.031): MDT follow-up (mean=2.07, SD=0.73), GP follow-up (mean=1.90, SD=0.84), or follow-up by telephone/questionnaire (mean=1.06, SD=0.83). Regarding MDT followup, survivors liked being able to contact all specialists they needed (mean=2.27, SD=0.81), and could be referred to the right specialist (mean=2.28, SD=0.77). They did not agree that MDT follow-up might be less personal (mean=1.50, SD=1.04) or might mean they did not know who was responsible for their care (mean=1.13, SD=0.96). 2) Characteristics associated with preferences for different models of follow-up care In univariable linear regression analyses we determined characteristics of survivors with different preferences for follow-up models (Online Table 2). Attenders rated follow-up by medical oncologist higher, and GP or phonefollow-up lower than non-attenders (Figure 4). Higher ratings of importance of clinical and supportive reasons were associated with all models: higher endorsement of importance of both clinical and supportive reasons were associated with lower rating of telephone/questionnaire and GP follow-up, and higher rating of the other models. Self-reported late effects were associated with lower rating of GP follow-up and higher rating of MDT followup. Survivors who received chemotherapy rated GP and paediatric oncologist follow-up highest and survivors undergoing other treatments rated them lower. Psychological distress was only associated with higher rating of importance of?MDT follow-up. Regarding sociodemographic characteristics, survivors older at study and those with higher education rated the paediatric oncologist follow-up lower, and French speaking survivors rated GP follow-up higher. Results of the multivariable linear regression remained similarly in the direction of Preferences for follow-up care 7 the association. However, fewer characteristics remained statistically significant (Table 2). DISCUSSION In our study, approximately half of responding survivors continued to attend follow-up. We found that clinical reasons for follow-up such as checking that cancer has not come back or being reassured about their health, were rated higher than supportive reasons. Survivors also expected competent staff at their follow-up, including paediatric or medical oncologists as well as general practitioners. Despite the age of these survivors (≥18 years) they valued going to the children’s hospital for follow-up, but adult hospital or GP practice were rated similarly highly. Follow-up by paediatric or medical oncologist were the preferred follow-up models, particularly by those who rated clinical reasons for follow-up as very important. The high endorsement of medical aspects of follow-up was similar to previous studies (Eiser et al., 1996, Michel et al., 2009, Zebrack et al., 2004, Earle et al., 2005). In a UK study using the same questions, we also found significantly higher importance given to clinical reasons than supportive reasons (Michel et al., 2009). We also found that survivors wanted to discuss clinical topics such as their current health, late effects or medication, rather than general topics such as insurance or work-related issues. Our results also support findings of a US study showing that survivors wanted to be taken seriously by their doctors (Zebrack et al., 2004). In contrast to UK studies, where GP follow-up was rated comparable with telephone/questionnaire follow-up (Michel et al., 2009, Eiser et al., 1996), Swiss survivors rated GP follow-up highly, though not as much as paediatric or medical oncologist follow-up. The high preference for GP follow-up was also found in a qualitative study in the USA (Zebrack et al., 2004); however, survivors ranked follow-up by a “primary care physician knowledgeable and experienced in working with survivors” (p.849) highest. As GPs do not usually care for many childhood cancer survivors most will lack the required experience. A close collaboration between GP and a specialised late effects clinic might be a solution to this problem (Oeffinger, 2003, Singer et al., 2013). A Dutch study showed the potential of further education about late effects and follow-up care for GPs and that GPs were interested in such a programme (Blaauwbroek et al., 2007). Swiss survivors rated paediatric oncologist follow-up highest. This is in contrast to a US study, where survivors rated a programme staffed with a paediatric oncologist and nurse practitioner lower than primary care physician follow-up (Zebrack et al., 2004). The high preference for the paediatric oncologist model in Switzerland might be due to the fact that survivors get high quality follow-up provided by their paediatric oncologist for at least 10 years after diagnosis. Therefore, the model describes a model with which they are familiar. Additionally, in Switzerland we have 9 specialised centres for paediatric oncology across the country, so that this model provides appropriate geographical access for most survivors. Both attenders and non-attenders to follow-up reported similar preferences for the organisation of follow-up. However, attenders valued clinical reasons slightly higher than non-attenders. This may be one of the reasons why survivors continue to attend follow-up while those who consider clinical reasons to be less important do not. However, this needs to be addressed in future work as differences are small. Expert opinions have often favoured centralised follow-up care by specialists (Essig et al., 2012). Our results suggest that Swiss survivors are not favouring this model; a central specialised late effects clinic was rated lowest among the provided places. Although, given the size of Switzerland, distances to a central clinic would be relatively short for most survivors, this suggests that there is a preference for follow-up to be close to home. Organised transition from paediatric to adult oncology clinic seems a logical way forward and should contribute to optimal follow-up care. Preferences for follow-up care 8 A major strength of this study is the involvement of a population-based sample including both those who attend and those who do not attend follow-up care. In addition, we had access to established information on diagnosis, treatment and relapse from the Swiss Childhood Cancer Registry. We also assessed a wide range of different characteristics of follow-up care so that a detailed picture of survivors’ needs could be drawn. A limitation is that we could not include an objective measure of risk for late effects, apart from general indicators associated with diagnosis, treatment, relapse and second tumour. Depending on this risk, different follow-up models might be clinically preferable (Wallace et al., 2001). For example, survivors with a high risk for late effects might require long-term specialist care while regular GP visits might be sufficient for low-risk survivors. It is not known how far survivors agree or not with these medical views. Another limitation is the low response rate, which might indicate that a large number of survivors are not interested in the topic of follow-up care or not aware of the implications of cancer for their future health. Follow-up care remains an important aspect of long-term survival after childhood cancer, and will continue to grow in importance as survivors age. It is crucial that long-term follow-up not only respects medical guidelines but is organised according to survivors’ needs and preferences. REFERENCES Absolom K., Greenfield D., Ross R., Horne B., Davies H., Glaser A., Simpson A., Waite H. & Eiser C. (2006) Predictors of clinic satisfaction among adult survivors of childhood cancer. Eur J Cancer 42, 1421-1427. Aslett H., Levitt G., Richardson A. & Gibson F. (2007) A review of long-term follow-up for survivors of childhood cancer. Eur J Cancer 43, 1781-1790. Blaauwbroek R., Zwart N., Bouma M., Meyboom-De Jong B., Kamps W. & Postma A. (2007) The willingness of general practitioners to be involved in the follow-up of adult survivors of childhood cancer. J Cancer Surviv 1, 292-297. Our study showed that survivors value clinicbased follow-up care by specialists, but also emphasises the necessity to provide care in convenient locations. This needs to be taken into account when considering provision of wellorganised long-term follow-up care for adult survivors of childhood cancer. Acknowledgements We thank all survivors for participating in our survey, the members of the study team of the Swiss Childhood Cancer Survivor Study (Julia Koch, Fabienne Liechti, Anna Hohn, Zina Heg-Bachar), and the team of the Swiss Childhood Cancer Registry (Vera Mitter, Elisabeth Kiraly, Marlen Spring, Priska Wölfli). This work was supported by the Swiss National Science Foundation (Ambizione grant PZ00P3_121682/1 and PZ00P3-141722 to GM; Grant 100019_153268 / 1). The Swiss Childhood Cancer Survivor Study was funded by the Swiss Cancer League (KLS-2215-02-2008, KFS-02631-08-2010, KLS-02783-02-2011). The work of the Swiss Childhood Cancer Registry is supported by the Swiss Paediatric Oncology Group (www.spog.chwww.spog.ch), Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und –direktoren (www.gdk-cds.ch), Swiss Cancer Research (www.krebsforschung.ch), Kinderkrebshilfe Schweiz (www.kinderkrebshilfe.ch), Ernst-Göhner Stiftung, Stiftung Domarena and National Institute of Cancer Epidemiology and Registration (www.nicer.ch). Conflict of Interest statement No conflict of interest for any of the authors. Children's Oncology Group (2013). Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers V4.0. Available from: http://www.survivorshipguidelines.org/ (cited 2013). Derogatis L. R. (2000) BSI-18 Administration, Scoring, and Procedures Manual, National Computer Services, Minneapolis, MN. Earle E. A., Davies H., Greenfield D., Ross R. & Eiser C. (2005) Follow-up care for childhood cancer survivors: a focus group analysis. 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X. & For the Swiss Paediatric Oncology Group (2012a) Cohort profile: The Swiss Childhood Cancer Survivor Study. Int J Epidemiol 41, 1553-1564. Kuehni C. E., Strippoli M.-P. F., Rueegg C. S., Rebholz C. E., Bergstraesser E., Grotzer M., Von Der Weid N. X. & Michel G. (2012b) Educational achievement in Swiss childhood cancer survivors compared with the general population. Cancer 118, 1439-1449. Michel G., Greenfield D., Absolom K. & Eiser C. (2011a) Satisfaction with follow-up consultations among younger adults treated for cancer: the role of quality of life and psychological variables. Psychooncology 20, 813-822. Michel G., Greenfield D. M., Absolom K., Ross R. J., Davies H. & Eiser C. (2009) Follow-up care after childhood cancer: Survivors' expectations and preferences for care. Eur J Cancer 45, 1616-1623 Michel G., Kuehni C. E., Rebholz C. E., Zimmermann K., Eiser C., Rueegg C. S. & Von Der Weid N. X. (2011b) Can health beliefs help in explaining attendance to follow-up care? 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(2011) Follow-up care amongst long-term childhood cancer survivors: A report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer 47, 221-229. Robison L. L., Mertens A. C., Boice J. D., Breslow N. E., Donaldson S. S., Green D. M., Li F. P., Meadows A. T., Mulvihill J. J., Neglia J. P., Nesbit M. E., Packer R. J., Potter J. D., Sklar C. A., Smith M. A., Stovall M., Strong L. C., Yasui Y. & Zeltzer L. K. (2002) Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multiinstitutional collaborative project. Med Pediatr Oncol 38, 229-239. Scottish Intercollegiate Guidelines Network (Sign) (2004) Long term follow-up of survivors of childhood cancer. A national clinical guideline, No. 76, Scottish Intercollegiate Guidelines Network, Edinburgh. Singer S., Gianinazzi M. E., Hohn A., Kuehni C. E. & Michel G. (2013) General practitioner involvement in follow-up of childhood cancer survivors: A systematic review. Pediatr Blood Cancer 60, 1565– 1573. 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Cancer 100, 843850. Preferences for follow-up care 11 Table 1: Sample description: Survivors who responded to the baseline questionnaire only compared to survivors who responded to both questionnaires Total Socio-demographic characteristics Sex Male Female Age at study ≤25 years >25 years Migration background No migration background Migration background Language German French / Italian Partnership No partner Has partner Education Vocational training Compulsory schooling Upper secondary/ university education Employment Not employed Employed In education Clinical characteristics Diagnosis Leukaemia Lymphoma CNS tumour Neuroblastoma Retinoblastoma Renal tumour Hepatic tumour Bone tumour STS Germ cell tumour Carcinoma Other neoplasm LCH Treatment Chemotherapy Surgery only Radiotherapy SCT Age at diagnosis 0-4 years 5-9 years 10+ years Non-participants N 440 % 100.0 Participants N 314 % 100.0 252 188 57.3 42.7 138 176 43.9 56.1 292 148 66.4 33.6 220 94 70.1 29.9 348 92 79.1 20.9 260 54 82.8 17.2 324 116 73.6 26.4 234 80 74.5 25.5 186 128 59.2 40.8 177 69 68 56.4 22.0 21.7 20 190 104 6.4 60.5 33.1 p* <0.001 0.283 0.204 0.785 0.526 136 89 71 15 10 22 3 24 21 20 6 1 22 30.9 20.2 16.1 3.4 2.3 5.0 0.7 5.5 4.8 4.5 1.4 0.2 5.0 113 59 36 8 5 21 1 22 20 9 7 1 12 36.0 18.8 11.5 2.5 1.6 6.7 0.3 7.0 6.4 2.9 2.2 0.3 3.8 191 77 135 37 43.4 17.5 30.7 8.4 137 32 114 31 43.6 10.2 36.3 9.9 107 134 199 24.3 30.5 45.2 86 78 150 27.4 24.8 47.8 0.030 0.225 Preferences for follow-up care 12 Table 1 continued Time since diagnosis 16+ years 11-15 years 5-10 years Relapse No relapse Relapse Second malignancy None Has second malignancy Late effects No late effects reported Late effects reported Psychological distress No distress Psychological distress Follow-up attendance Regularly attends follow-up Irregularly attends follow-up Follow-up completed, visits treating doctor for questions Follow-up completed, never visit former treating doctor Non-participants N % Participants N % 253 144 43 57.5 32.7 9.8 177 91 46 56.4 29.0 14.6 397 43 90.2 9.8 276 38 87.9 12.1 418 22 95.0 5.0 301 13 95.9 4.1 276 145 62.7 33.0 184 127 58.6 40.4 232 79 73.9 25.2 128 22 41 40.8 7.0 13.1 123 39.2 p* 0.102 0.309 0.580 0.077 mean SD mean SD p# Age at study 24.3 4.2 24.1 4.4 0.584 Age at diagnosis 8.7 4.5 8.9 4.6 0.622 Time since diagnosis 15.5 3.7 15.2 4.0 0.381 *p from chi2 tests, #p from two sample t-tests, STS Soft tissue sarcomas, LCH Langerhans cell histiocytosis, SCT Stem cell transplantation Preferences for follow-up care 13 Table 2: Multivariable linear regression analyses describing characteristics associated with different follow-up model preferences Follow-up by Telephone / Questionnaire Coeff 95% CI p 1.91 1.49 2.32 General Practitioner Coeff 95% CI p 2.54 2.14 2.95 Paediatric Oncologist Coeff 95% CI p 1.91 1.56 2.27 Medical Oncologist Coeff 95% CI p 1.55 1.20 1.89 Multidisciplinary team Coeff 95% CI p 1.52 1.15 1.88 Intercept Age at study <=25 years >25 years 0.07 -0.17 0.32 0.551 -0.05 -0.28 0.19 0.706 -0.18 -0.39 0.03 0.088 -0.17 -0.37 0.04 0.110 0.01 -0.20 0.23 Language German French/Italian 0.16 -0.07 0.38 0.171 0.33 0.11 0.55 0.004 -0.12 -0.31 0.08 0.234 -0.04 -0.24 0.15 0.643 -0.08 -0.28 0.12 Education Vocational training Compulsory schooling -0.05 -0.28 0.19 0.706 -0.11 -0.34 0.13 0.376 0.24 0.03 0.45 0.024 -0.02 -0.22 0.18 0.836 0.03 -0.19 0.24 Upper secondary/ university 0.11 -0.15 0.37 0.391 -0.03 -0.28 0.23 0.820 0.02 -0.21 0.24 0.892 0.10 -0.12 0.32 0.351 0.10 -0.13 0.33 Treatment Chemotherapy Surgery only -0.02 -0.34 0.31 0.924 -0.29 -0.61 0.03 0.074 -0.43 -0.71 -0.15 0.003 0.00 -0.28 0.27 0.975 -0.15 -0.44 0.14 Radiotherapy -0.03 -0.25 0.19 0.775 -0.14 -0.36 0.07 0.188 -0.18 -0.36 0.01 0.066 0.03 -0.16 0.21 0.785 -0.01 -0.21 0.18 SCT -0.10 -0.44 0.24 0.551 -0.10 -0.43 0.24 0.563 -0.29 -0.59 0.00 0.049 -0.16 -0.45 0.13 0.271 -0.12 -0.42 0.19 Follow-up Follow-up attender Not attending follow-up -0.19 -0.39 0.00 0.055 -0.21 -0.41 -0.02 0.033 0.10 -0.07 0.27 0.259 0.18 0.01 0.35 0.034 0.00 -0.18 0.17 Clinical Reasons for follow-up (continuous 0-3) Intercept per 1 point increase -0.34 -0.54 -0.14 0.001 -0.04 -0.24 0.16 0.691 0.11 -0.06 0.29 0.197 0.31 0.14 0.48 0.000 0.12 -0.06 0.29 Supportive Reasons for follow-up (continuous 0-3) Intercept per 1 point increase 0.03 -0.15 0.20 0.750 -0.22 -0.39 -0.05 0.011 0.12 -0.03 0.27 0.111 -0.10 -0.24 0.05 0.195 0.12 -0.04 0.27 Psychological distress (BSI case) No distress Significant distress -0.14 -0.36 0.07 0.197 -0.07 -0.28 0.15 0.543 0.05 -0.14 0.24 0.628 0.10 -0.08 0.29 0.270 0.16 -0.03 0.36 Late effects None Late effects reported -0.01 -0.21 0.19 0.923 -0.09 -0.28 0.11 0.374 -0.07 -0.25 0.10 0.394 -0.03 -0.20 0.14 0.710 0.20 0.03 0.38 Coeff: Coefficient, CI: Confidence Interval, SCT: Stem cell transplantation, BSI case: survivor with high distress in the Brief Symptom Inventory (T≥57 on at least 2 scales or the Global severity index) 0.907 0.448 0.813 0.401 0.308 0.890 0.451 0.984 0.198 0.130 0.102 0.025 Preferences for follow-up care 14 FIGURE LEGENDS Figure 1: Participant and non-participant of the study Preferences for follow-up care 15 Figure 2: Reasons for follow-up care (0 not important to 3 very important; mean and 95% confidence interval) Preferences for follow-up care 16 Figure 3: Importance of different aspects of follow-up (0 not important to 3 very important; mean and 95% confidence interval) Figure 4: Preferences for different models of follow-up care among attenders and nonattenders to follow-up (mean agreement with 4 items) Preferences for follow-up care 17 Non-attenders: reported not attending follow-up regularly or irregularly; attenders: reported attending follow-up regularly or irregularly Attenders to follow-up Non-attenders to follow-up Preferences for follow-up care 18 Online Table 1: Differences in preferences for the organisation of follow-up between attenders and nonattenders to follow-up Non-attenders Mean 95%CI Attenders Mean 95%CI 2.25 2.48 2.36 (2.15-2.34) (2.35-2.62) (2.24-2.48) 2.41 2.57 2.51 (2.32-2.49) (2.45-2.69) (2.41-2.62) 0.014 0.346 0.065 2.10 (1.96-2.24) 2.25 (2.13-2.38) 0.114 2.03 1.54 (1.88-2.18) (1.43-1.65) 2.29 1.69 (2.17-2.41) (1.57-1.81) 0.009 0.065 2.17 (2.03-2.30) 2.15 (2.02-2.29) 0.888 1.75 (1.59-1.91) 2.05 (1.90-2.21) 0.008 1.44 1.23 (1.29-1.58) (1.07-1.39) 1.56 1.38 (1.41-1.71) (1.21-1.54) 0.228 0.218 1.12 (0.96-1.27) 1.30 (1.14-1.47) 0.105 2.74 2.70 2.49 (2.67-2.82) (2.62-2.77) (2.39-2.59) 2.74 2.70 2.53 (2.66-2.82) (2.62-2.78) (2.43-2.63) 0.945 0.938 0.619 Insurance reimbursement Doctor continuity No long waiting Regular appointments Short consultation 2.48 2.34 2.08 1.71 1.65 (2.37-2.58) (2.22-2.45) (1.95-2.21) (1.58-1.84) (1.51-1.79) 2.53 2.48 1.90 2.05 1.56 (2.41-2.65) (2.36-2.61) (1.76-2.04) (1.92-2.18) (1.42-1.70) 0.473 0.093 0.063 <0.001 0.400 Nurse continuity Meet survivors 1.39 0.90 (1.24-1.53) (0.77-1.04) 1.48 0.87 (1.33-1.63) (0.74-1.00) 0.383 0.759 What should be included in follow-up? Medical follow-up Cancer has not come back 2.73 (2.64-2.82) 2.83 (2.75-2.90) 0.110 Screen for late effects Info on potential late effects Other medical FU 2.64 2.62 1.78 (2.55-2.73) (2.53-2.70) (1.26-2.30) 2.70 2.65 1.83 (2.62-2.78) (2.57-2.74) (1.21-2.45) 0.324 0.548 0.902 General follow-up Risk for my children Psychological counselling Alternative medicine Sexuality Education / Job 2.23 1.42 1.26 1.22 0.91 (2.11-2.36) (1.29-1.56) (1.12-1.40) (1.09-1.35) (0.77-1.05) 2.21 1.50 1.43 1.28 1.28 (2.08-2.35) (1.34-1.65) (1.28-1.58) (1.15-1.40) (1.12-1.43) 0.858 0.476 0.093 0.555 0.001 Exchange with other survivors Other offers Spirituality 0.91 0.76 0.35 (0.77-1.06) (0.10-1.43) (0.25-0.45) 0.99 0.54 0.49 (0.86-1.12) (-0.14-1.22) (0.38-0.60) 0.465 0.621 0.076 Reasons for follow-up care Clinical reasons (mean score) Check the cancer has not come back Get reassurance about health Help clinic staff learn more about late effects of Cancer/treatment Get the best medical care Supportive reasons (mean score) Get information about late effects of cancer Talk to staff who understand what I've been through Get advice about how to keep healthy Receive psychological support Get advice about everyday things like insurance What is important during follow-up? Competent staff Be taken seriously Relationship quality p* Preferences for follow-up care 19 Online Table 1 continued Non-attenders Mean 95%CI Attenders Mean 95%CI p* What medical and non-medical specialists should be involved in follow-up? Paediatric Oncologist 2.33 (2.18-2.47) 2.19 General practitioner 2.13 (1.98-2.27) 2.07 Medical Oncologist 1.98 (1.82-2.14) 2.17 (2.02-2.36) (1.91-2.23) (2.01-2.33) 0.221 0.596 0.101 Fertility counselling Gynaecologist Psychologist/Psychiatrist Radiotherapies 1.51 1.20 1.19 1.15 (1.34-1.68) (1.03-1.37) (1.04-1.35) (1.00-1.30) 1.45 1.38 1.20 1.00 (1.28-1.62) (1.19-1.56) (1.04-1.37) (0.84-1.16) 0.647 0.157 0.935 0.162 Specialist nurse Endocrinologist Geneticist Physiotherapist Nutritional counselling 1.12 1.09 1.03 0.98 0.96 (0.97-1.28) (0.94-1.24) (0.88-1.19) (0.84-1.12) (0.81-1.10) 1.14 1.32 0.90 0.99 1.03 (0.99-1.30) (1.15-1.50) (0.74-1.06) (0.85-1.14) (0.88-1.18) 0.867 0.045 0.237 0.907 0.484 Insurance counselling Social worker Career counselling Other specialist 0.90 0.70 0.66 0.33 (0.75-1.04) (0.58-0.82) (0.53-0.78) (-0.05-0.71) 0.88 0.78 0.74 1.11 (0.73-1.03) (0.64-0.93) (0.59-0.88) (0.43-1.78) 0.871 0.386 0.397 0.048 (1.78-2.10) (1.76-2.10) (1.78-2.07) (1.12-1.46) 1.76 1.96 1.79 1.19 (1.60-1.92) (1.77-2.14) 0.109 0.831 0.249 0.428 Where would you like to go for follow-up? Follow-up at general practitioner 1.94 Follow-up at children's hospital 1.93 Follow-up at adult hospital 1.92 Follow-up at specialised late effect clinic 1.29 95%CI: 95% confidence interval * p from t-tests for comparison between groups (1.62-1.97) (1.02-1.36) Preferences for follow-up care 20 Online Table 2: Univariable linear regression analyses describing characteristics associated with different follow-up model preferences Follow-up by Total Sex Male Female Age at study <=25 years >25 years Parent or child migration background no migration background migration background Language German French Partner No Yes Education Vocational training Compulsory schooling Upper secondary/ university Employment not employed employed in education Clinical characteristics Diagnosis Leukaemias Lymphomas CNS tumours Other Treatment Chemotherapy Surgery only Radiotherapy SCT Telephone / Questionnaire Coeff 95% CI p 1.06 0.97 1.15 0.527 1.09 0.96 1.23 -0.06 -0.25 0.13 0.306 1.03 0.92 1.14 0.10 -0.10 0.31 General Practitioner Coeff 95% CI p 1.90 1.81 1.99 0.709 1.88 1.74 2.02 0.04 -0.15 0.22 0.684 1.91 1.80 2.02 -0.04 -0.25 0.16 0.425 1.04 0.10 0.94 -0.15 1.15 0.34 1.03 0.13 0.92 -0.08 1.14 0.34 1.10 -0.11 0.98 -0.29 1.22 0.08 1.05 -0.08 0.15 0.92 -0.31 -0.08 1.17 0.15 0.38 1.23 -0.19 -0.15 0.86 -0.58 -0.54 1.59 0.19 0.25 1.01 -0.04 0.07 0.15 0.85 -0.30 -0.24 -0.07 1.16 0.23 0.38 0.38 1.11 0.05 -0.08 -0.24 0.97 -0.27 -0.29 -0.57 1.25 0.37 0.12 0.08 0.816 1.90 -0.03 1.80 -0.28 2.01 0.22 1.82 0.32 0.00 1.95 -0.13 1.71 0.11 0.00 1.83 -0.32 1.92 0.53 0.00 2.07 0.06 1.95 -0.19 -0.05 1.83 -0.42 -0.28 2.07 0.04 0.19 1.59 0.37 0.26 1.22 -0.01 -0.14 1.95 0.76 0.66 1.94 0.06 -0.28 -0.05 1.78 -0.20 -0.60 -0.27 2.09 0.32 0.03 0.18 2.04 -0.42 -0.22 -0.19 1.90 2.18 -0.74 -0.10 -0.43 -0.01 -0.52 0.13 0.231 0.268 Paediatric Oncologist Coeff 95% CI p 2.24 2.16 2.32 0.792 2.23 2.11 2.35 0.02 -0.14 0.18 0.001 2.33 2.24 2.43 -0.30 -0.47 -0.13 0.387 2.26 -0.09 2.17 -0.31 2.35 0.12 2.25 -0.03 2.16 -0.22 2.34 0.15 2.21 0.08 2.11 -0.09 2.32 0.24 2.20 0.31 -0.13 2.10 0.11 -0.33 2.31 0.51 0.07 2.21 0.02 0.07 1.88 -0.32 -0.29 2.54 0.36 0.42 2.30 -0.03 -0.36 -0.04 2.17 2.43 -0.25 0.20 -0.63 -0.09 -0.23 0.16 2.40 -0.40 -0.24 -0.25 2.28 2.52 -0.68 -0.13 -0.42 -0.06 -0.53 0.03 0.003 0.243 0.188 0.434 2.26 0.21 2.18 -0.03 2.09 -0.20 2.27 0.15 2.15 0.05 2.05 -0.10 2.25 0.21 2.17 0.01 -0.03 2.07 -0.19 -0.22 2.28 0.21 0.17 1.91 0.32 0.21 1.60 -0.01 -0.13 2.22 0.64 0.55 2.12 0.10 -0.11 0.13 1.99 -0.12 -0.38 -0.05 2.25 0.32 0.16 0.32 2.18 -0.03 0.01 -0.06 2.06 -0.30 -0.17 -0.34 2.30 0.24 0.18 0.21 1.97 -0.16 2.15 0.27 2.07 0.00 1.97 -0.19 2.16 0.19 2.03 0.08 1.93 -0.08 2.14 0.25 2.02 0.09 0.15 1.91 -0.12 -0.06 2.13 0.29 0.36 1.76 0.31 0.35 1.43 -0.04 0.00 2.09 0.65 0.71 2.05 0.02 -0.06 0.06 1.91 -0.21 -0.35 -0.13 2.19 0.26 0.22 0.26 2.08 -0.12 0.03 -0.10 1.96 -0.41 -0.16 -0.38 2.20 0.17 0.21 0.19 0.972 0.497 0.317 0.948 0.845 0.334 0.112 0.068 0.034 0.599 2.06 0.06 0.773 0.001 0.247 0.412 2.08 -0.21 0.351 0.117 Multidisciplinary team Coeff 95% CI p 2.07 1.99 2.15 0.095 1.99 1.87 2.11 0.14 -0.02 0.30 0.297 2.04 1.94 2.14 0.09 -0.08 0.27 0.997 2.17 0.00 0.723 0.284 0.599 Medical Oncologist Coeff 95% CI p 2.17 2.09 2.25 0.086 2.09 1.98 2.21 0.14 -0.02 0.29 0.119 2.21 2.12 2.30 -0.13 -0.30 0.03 0.152 0.241 0.006 0.827 0.958 0.699 Preferences for follow-up care 21 Follow-up by Age at diagnosis 0-4 years 5-9 years 10+ years Time since diagnosis 16+ years 11-15 years 5-10 years Relapse No relapse Relapse Second tumour None Second tumour Follow-up Follow-up attender Not attending follow-up Clinical Reasons for followup (linear 0-3) Intercept per 1 point increase Supportive Reasons for follow-up (linear 0-3) Intercept per 1 point increase Psychological distress (BSI case) No distress Significant distress Late effects None Late effects reported Telephone / Questionnaire Coeff 95% CI p 0.665 1.06 0.89 1.24 0.07 -0.19 0.32 -0.04 -0.26 0.18 0.446 1.11 0.99 1.24 -0.13 -0.34 0.08 -0.10 -0.37 0.17 0.602 1.05 0.95 1.15 0.07 -0.21 0.36 0.852 1.06 0.97 1.16 -0.04 -0.51 0.42 0.003 1.20 1.07 1.32 -0.28 -.46 0.10 0.000 1.90 -0.36 1.52 -0.52 2.28 -0.20 1.33 -0.16 1.09 -0.29 1.56 -0.03 1.11 -0.15 1.00 -0.37 1.21 0.06 1.09 -0.05 0.97 -0.24 1.21 0.14 General Practitioner Coeff 95% CI p 0.819 1.93 1.76 2.11 -0.01 -0.27 0.24 -0.07 -0.29 0.16 0.970 1.91 1.78 2.03 -0.03 -0.24 0.19 -0.01 -0.29 0.26 0.783 1.89 1.80 1.99 0.04 -0.25 0.33 0.882 1.90 1.81 2.00 -0.04 -0.50 0.43 0.000 2.06 1.93 2.19 -0.34 -.52 -0.16 Paediatric Oncologist Coeff 95% CI p 0.132 2.37 2.21 2.52 -0.22 -0.44 0.00 -0.14 -0.33 0.05 0.068 2.16 2.05 2.27 0.19 0.01 0.38 0.19 -0.05 0.42 0.633 2.25 2.16 2.34 -0.06 -0.31 0.19 0.254 2.25 2.17 2.34 -0.23 -0.64 0.17 0.183 2.19 2.08 2.30 0.11 -0.05 0.27 0.00 2.33 -0.19 1.94 2.71 -0.35 -0.03 1.70 0.24 1.36 0.10 2.03 0.37 2.24 -0.22 2.02 2.47 -0.35 -0.09 1.95 0.18 1.75 0.07 2.15 0.30 1.93 -0.14 1.82 -0.35 2.04 0.08 2.23 0.04 2.14 -0.15 2.32 0.22 1.98 -0.20 1.86 -.38 2.10 -0.01 2.29 -0.10 2.19 -0.27 2.40 0.06 0.023 0.017 0.001 0.001 0.155 1.23 0.14 1.86 0.40 2.05 0.07 1.86 -0.04 2.25 0.18 2.16 0.04 2.07 -0.14 2.25 0.21 2.20 -0.07 2.10 -0.23 2.30 0.09 0.019 1.67 0.17 1.33 0.03 2.01 0.31 1.78 0.18 1.58 0.07 1.98 0.29 2.02 0.21 1.93 0.02 2.12 0.40 1.98 0.23 1.87 0.06 2.08 0.39 0.199 0.706 0.038 Multidisciplinary team Coeff 95% CI p 0.731 2.02 1.86 2.17 0.05 -0.17 0.28 0.08 -0.12 0.28 0.301 2.02 1.91 2.13 0.15 -0.04 0.33 0.02 -0.22 0.26 0.891 2.07 1.98 2.16 -0.02 -0.27 0.23 0.959 2.07 1.98 2.15 -0.01 -0.42 0.40 0.557 2.04 1.93 2.16 0.05 -0.12 0.21 0.000 1.55 0.27 0.002 0.202 0.584 Medical Oncologist Coeff 95% CI p 0.174 2.10 1.95 2.26 -0.01 -0.23 0.20 0.14 -0.05 0.33 0.062 2.10 2.00 2.21 0.09 -0.08 0.27 0.27 0.04 0.49 0.291 2.19 2.10 2.27 -0.13 -0.36 0.11 0.299 2.16 2.08 2.24 0.20 -0.18 0.59 0.014 2.08 1.97 2.18 0.19 0.04 0.35 0.002 0.690 0.214 0.028 0.411 0.007 Coeff: Coefficient, CI: Confidence Interval, CNS: Central nervous system, SCT: Stem cell transplantation, BSI case: survivor with high distress in the Brief Symptom Inventory (T≥57 on at least 2 scales or the Global severity index)