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. 2024 Jul 11;14(7):e081823.
doi: 10.1136/bmjopen-2023-081823.

Characteristics and feedback of adult survivors of childhood cancer seen in Swiss comprehensive follow-up clinics led by general internists: a prospective cohort study

Eva Maria Eugenia Tinner  1   2 , Oezcan Dogan  1 , Maria Boesing  1   3 , Katharina Roser  4 , Gisela Michel  4 , Anna-Elisabeth Minder  1   5 , Sabrina Maier  1 , Marinela Bayha  1   2 , Helene Affolter  6 , Christine Baumgartner  6 , Fabian Meienberg  1 , Claudia Kuehni  7 , Jochen Rössler  2 , Maria M Wertli #  6   8 , Jörg D Leuppi #  9   3
Affiliations

Characteristics and feedback of adult survivors of childhood cancer seen in Swiss comprehensive follow-up clinics led by general internists: a prospective cohort study

Eva Maria Eugenia Tinner et al. BMJ Open. .

Abstract

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.

Keywords: Feasibility Studies; GENERAL MEDICINE (see Internal Medicine); Paediatric oncology; Patient Care Management; Quality of Life.

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Conflict of interest statement

Competing interests: A-EM is a specialist for porphyria and received financial support via an unrestricted research grant from Clinuvel Pharmaceuticals and for a porphyria nurse from Alnylam Pharmaceuticals. Both are paid into the ‘Stiftung für wissenschaftliche Forschung, Stadtspital Triemli’ and are not related to this scientific work. JDL is supported by grants from the Swiss National Science Foundation (SNF 160072 and 185592) as well as by the Swiss Personalised Health Network (SPHN 2018DR108). JDL has also received unrestricted grants from AstraZeneca AG Switzerland, Boehringer Ingelheim GmbH Switzerland, GSK AG Switzerland, Novartis AG Switzerland and Sanofi AG Switzerland. None of them are related to this scientific work. No other conflicting interests were declared.

Figures

Figure 1
Figure 1. Flow chart: patient pathway and study population. ACCS, adult childhood cancer survivors; CCS, childhood cancer survivors; LTFU, long-term follow-up.
Figure 2
Figure 2. Number of organ systems affected by health problems. CTCAE, common terminology criteria for adverse events.
See this image and copyright information in PMC

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