E. M. Tinner1,2, M. M. Wertli3, A. Minder4, T. Dieterle2, C. Priboi5, G. Michel5, J. Beyer6, J. Rössler1*, J. D. Leuppi2*
*Last authorship shared
1 Division of Hematology/Oncology, Department of Pediatrics and University Cancer Center Inselspital (UCI), Inselspital Bern, University of Bern
2 University Department of Medicine, Cantonal Hospital Baselland, Liestal, University of Basel
3 Department of General Internal Medicine, Inselspital Bern, University of Bern
4 Division of Endocrinology, Diabetology, Porphyria, Stadtspital Triemli, Zurich
5 Department of Health Sciences and Health Policy, University of Luzern
6 Department of Medical Oncology and University Cancer Center Inselspital (UCI), Inselspital Bern, University of Bern
adult Swiss CCS have been provided with a detailed treat-ment summary and undergo FU assesstreat-ments according to guidelines [4]. Therefore, we have developed a program addressing this unmet medical need in adult CCS.
Concept and development of a CCS FU clinic
During a planning phase of approximately 2 years, the conceptual framework for the first FU clinic in Switzer-land at the Cantonal Hospital BaselSwitzer-land, Liestal, for adult CCS who had been lost to FU was developed. Due to the multifaceted and often complex health problems present in CCS, an expert in General Internal Medicine and en-docrinology in collaboration with a pediatric oncologist is involved in preparing the clinic visits. Preparation is based on the cancer-related treatment, known late effects, and self-reported limitations as reported in a question-naire. The cancer-related treatment of each CCS is entered into the «Passport for Care®» online application which was developed by the Center for Collaborative and Inter-active Technologies at Baylor College of Medicine and Texas Children’s Cancer Center, Houston, USA [5]. The
«Passport for Care®» provides individualized follow-up recommendations for CCS according to the LTFU guide-lines of the COG [6].
Prior to the clinic visit, all CCS are asked to complete a questionnaire very similar to the health questionnaires used in the Swiss Childhood Cancer Survivor Study (SCCSS [7]) which assesses health-related quality of life (HRQOL) using the SF 36 [8], psychological distress us-ing the BSI [9], as well as a list of possible late effects, medications, and information on lifestyle. Based on the individualized COG LTFU-recommendations together with the information from the questionnaire, clinic visits are planned according to the medical history and needs of the CCS. A trained nurse serves as a case manager and
point of contact. She organizes the individualized clinic day, which includes a detailed patient history, physical ex-amination, various additional exams according to individ-ual needs, and an in-person discussion of the test results and information provided in the «Passport for Care®»
(example in Tab. 1).
The program was introduced and tested starting in spring 2017 at the Cantonal Hospital Baselland, Liestal.
After a successful completion of the test phase, it has been opened for all CCS independent from their canton of residency.
Beyond the clinical program, data on the current health of our patients, their wishes and motivation before the clinic visit and three months after the clinic visit, their feedback and HRQOL are collected prospectively in the framework of an accompanying research project. The data is needed to gain further insights into the health status of our patients, in particular to identify early signs of cancer treatment-associated organ damage and to adapt the clinic to the needs and wishes of the CCS.
First experiences from the CCS FU clinic
Due to the extensive work-up only one patient per clinic day can be accommodated so far. Thus, by the end of 2018, 26 CCS – mostly in their thirties and forties and coming from almost all regions of Switzerland – have attended the FU clinic (Fig. 1).
Many CCS suffer from several, mainly endocrine, car-diovascular, and/or respiratory CHCs. While in previous studies of the Swiss Childhood Cancer Survivor Study CCS reported an overall good HRQOL [10], CCS who at-tended our FU clinic reported a lower HRQOL (Fig. 2) before their first clinic visit. This observation might be due to the fact that patients fill in questionnaires differ-ently in preparation for a clinic visit, or because those who seek FU care indeed have a lower HRQOL, e.g. because of the CHC they experience.
Regarding the impact of the FU clinic, our results are promising. A total of 19 patients seen by the end of 2018 returned their 3 months follow-up questionnaire. Most CCS were satisfied with the FU clinic, with no negative impact of the FU visit on their level of fear (Fig. 3). A large number of CCS (74%) is planning to attend the FU clinic annually for their follow-up visit (Fig. 4).
These first results helped us to extend the program and expand the CCS FU clinic to the University Hospital Bern (Inselspital), where the first patients were seen at the Outpatient Clinic of the Department of General In-ternal Medicine in October 2018. The CCS FU clinic at the Inselspital is supported by the University Cancer Center (UCI). Furthermore, strong collaborations be-tween specialists from the Department of General In-ternal Medicine, the Department of Pediatric Oncology and the Department of Medical Oncology exist and all relevant Specialty Departments were involved to further improve the care for CCS.
Tab. 1. Example of Clinic Visit.
08.30 Arrival (fasting)
08.35 Taking of blood and urine samples 08.45 ECG, size, weight
09.15 Measurement of Bone Mineral Density 09.45 Breakfast
10.00 History and examination (General Medicine physician) 11.00 Ultrasound of thyroid gland
11.30 Echocardiography (Cardiologist) 12.00 Lungfunction testing including DLCO 12.30 Lunchbreak
13.15 Dermatological examination (Dermatologist) 14.00 Ophthalmological examination (Ophthalmologist)
14.30 Discussion of results and follow-up guidelines (pediatric oncologist and General Medicine physician)
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Fig. 2. Lower HRQOL in all eight measured domains in CCS seen in Liestal (N=25) compared to the SCCSS-Participants (N=1593): especially for physical functioning (PF), general health perceptions (GH), and vitality (VT).
Health-related quality of life measured with the SF-36
Mean (95% CI)
100 90 80 70 60 50 40 30
PF RP BP GH VT SF RE MH
Fig. 1. Residency of the CCS seen in Liestal from spring 2017 until fall 2018 (n = 26).
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While the Bernese FU clinic works according to the same concept as the FU clinic at the Cantonal Hospital Baselland, Liestal, mostly young adults were seen so far, many directly transitioned from the SPOG center at the Children’s Hospital into adult medicine. Our experience until now shows that the FU clinic concept also works in the setting of a University Hospital, even though the workload remains high. The CCS presenting in Bern were also satisfied with the clinic visit and most of them plan to continue their FU visit in the FU clinic in Bern. The accompanying clinical research project for CCS of the Ber-nese FU clinic will be opened in autumn 2019 after ad-ministrative issues are settled.
Perspectives
A lifelong FU improves the health of CCS [11]. Our expe-riences with the CCS FU clinics in Liestal and Bern dem-onstrate that establishing an interdisciplinary FU clinic led by General Internal Medicine specialists is feasible and helps to address unmet needs in CCS patients. We expect that the strong interdisciplinary collaboration established at the FU clinics will not only improve care, but also pre-vent severe CHCs in CCS. The need for improved long-term FU has been recognized in Switzerland [12] and we encourage other Swiss hospitals to offer comparable FU clinics for CCS living in their catchment area. However, it has to be emphasized that in our experience the feasibility mostly depends on the intrinsic motivation of the local teams. Additionally, since essential parts of the work are not covered by the health insurers (e.g. the work of the
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case manager, the coordination of the complex and indi-vidualized visits), to a great extent the FU clinics current-ly depend on financial commitments from third parties, including hospitals and non-for profit foundations.
Conclusions
Our model of long term CCS FU clinics is based on a strong interdisciplinary collaboration between Pediatric Oncology and General Internal Medicine, including a fo-cused case management and clinical assessments based on the COG-LTFU-guidelines. So far, we were able to suc-cessfully implement the concept at a Cantonal Hospital and a large University Hospital in Switzerland. However, to provide adequate FU care for all Swiss adult CCS, there is a need to establish further clinics across Switzerland.
Funding
The FU clinic at Liestal is partly funded by the Forschungs-fonds der Medizinischen Universitätsklinik, Kantonsspi-tal Baselland. The FU clinic at InselspiKantonsspi-tal in Bern is partly funded by the University of Bern. Further funding is ur-gently needed to continue the ongoing scientific projects for the CCS cohort living in Switzerland.
Literature:
1. Tinner EM, et al. Long-term follow-up after childhood cancer in Switzerland: a position statement from the pediatric Swiss LTFU working group. Schweizer Krebsbulletin 03/2019, 2019.
undecided 5%
21%no
yes74%
Figure 4: Plan of CCS to continue FU in Liestal (n= 19).
Plan to continue follow-up in Liestal
Figure 3: Fears after visit at the FU clinic Liestal (n= 19).
Strongly agree
0% Agree
16%
Disagree Strongly 16%
disagree 68%
My fears are bigger since the FU appointment
2. Bhakta N, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet 390: 2569-2582, 2017.
3. Declaration of Dublin 2016:
https://www.childhoodcancerinternational.org/understanding-childhood-cancer/facts-on-survivorship/
4. Rebholz CE, et al. Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survi-vor Study. Eur J Cancer 47: 221-229, 2011.
5. Gramatges MM, et al. (2018) Improving Childhood Cancer Sur-vivor Care Through Web-Based Platforms. Oncology (Williston Park) 32: e1-e10, 2018.
6. Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers – Version 5.0, 2018. http://www.survivorshipguidelines.org/pdf/2018/
COG_LTFU_Guidelines_v5.pdf
7. Kuehni CE, et al. Cohort profile: The Swiss Childhood Cancer Survivor Study. Int J Epidemiol 41: 1553-1564, 2012.
8. Ware Jr JE, et al. SF-36v2® Health Survey: Administration guide for clinical trial investigators. Lincoln, RI: Quality Metric Incop-rorated; 2008.
9. Derogatis LR. Brief symptom inventory (BSI), administration, scoring, and procedures manual (third ed.). Minneapolis National Computer Services; 1993.
10. Rueegg CS, et al. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv 7: 511-522, 2013.
11. Signorelli C, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Crit Rev On-col Hematol 114: 131-138, 2017. doi: 10.1016/j.critrev-onc.2017.04.007.
12. Meier JH, et al. Aftercare in pediatric oncology in Switzerland – Current state, challenges and future directions. Schweizer Krebsbulletin 38: 273-279, 2018.
Correspondence:
Dr. med. Eva Maria Tinner Oberärztin
Pädiatrische Onkologie und Hämatologie Inselspital, Universitätskinderklinik Freiburgstrasse 10, CH-3020 Bern eva.tinner@insel.ch
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