Characteristics and feedback of adult survivors of childhood cancer seen in Swiss comprehensive follow-up clinics led by general internists: a prospective cohort study
Christine Baumgartner,
Claudia Kuehni,
Gisela Michel,
Katharina Roser,
Jörg D Leuppi,
Maria M Wertli,
Eva Maria Eugenia Tinner,
Oezcan Dogan,
Maria Boesing,
Anna-Elisabeth Minder,
Sabrina Maier,
Marinela Bayha,
Helene Affolter,
Fabian Meienberg,
Jochen Rössler
Affiliations
Christine Baumgartner
Department of General Internal Medicine, University of Bern, Bern, Switzerland
Claudia Kuehni
Childhood Cancer Research Group, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland
Gisela Michel
Faculty of Health Sciences and Medicine, University of Lucerne, Luzern, Switzerland
Katharina Roser
Faculty of Health Sciences and Medicine, University of Lucerne, Luzern, Switzerland
Jörg D Leuppi
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Maria M Wertli
Department of General Internal Medicine, University of Bern, Bern, Switzerland
Eva Maria Eugenia Tinner
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Oezcan Dogan
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Maria Boesing
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Anna-Elisabeth Minder
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Sabrina Maier
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Marinela Bayha
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Helene Affolter
Department of General Internal Medicine, University of Bern, Bern, Switzerland
Fabian Meienberg
University Institute of Internal Medicine, Cantonal Hospital Baselland, Liestal, Switzerland
Jochen Rössler
Paediatric Haematology/Oncology, Department of Pediatrics, Inselspital—University Hospital Bern, Bern, Switzerland
Objectives In our study, we aimed to characterise adult childhood cancer survivors (ACCS), assess their health issues, gauge health-related quality of life (HRQOL) and evaluate visit satisfaction.Design Prospective cohort study using data from clinical visits and questionnaires.Setting Interdisciplinary follow-up programme for ACCS based on the long-term follow-up (LTFU) guidelines of the Children’s Oncology Group and overseen by internists in two Swiss hospitals.Participants ACCS attending our LTFU clinics between April 2017 and January 2022 were eligible.Interventions We documented medical history, current health status and assessed HRQOL using Short Form-36 V.2, comparing it with Swiss general population (SGP) norms (T mean=50, SD=10; age stratified). 3 months post visit, a feedback questionnaire was distributed.Main results Among 102 ACCS (mean age: 32 years (range: 18–62 years), 68% women), 43 had no prior follow-up (36 ACCS>28 years, 7 ACCS≤28 years). A notable 94% had health issues, affecting an average of 6.1 (SD=3.3) organ systems. HRQOL was lower in ACCS>28 years than the SGP>28 years (physical: 44.8 (SD=11.65) vs 49.3 (SD=10.29), p=0.016; mental: 44.4 (SD=13.78) vs 50.53 (SD=9.92), p=0.004). Older ACCS (>28 years) reported inferior physical (44.8 vs 50.1 (SD=9.30), p=0.017) and mental HRQOL (44.4 vs 50.3 (SD=7.20), p=0.009) than younger ACCS. The majority of respondents reported high levels of satisfaction with the consultation, exceeding 90%.Conclusion ACCS attending LTFU clinics face diverse health issues impacting multiple organ systems and exhibit lower HRQOL compared with the SGP. Thus, internist-led LTFU clinics are crucial for optimising follow-up care.