Introduction

Worldwide, approximately 400,000 children and adolescents aged 18 years and younger are diagnosed with cancer each year [1]. Because of improved cancer treatments, there are currently around 500,000 childhood, adolescent and young adult (CAYA) cancer survivors living in Europe [2, 3]. However, due to the adverse effects of cancer treatment, CAYA cancer survivors are at high risk of developing health problems, including a wide range of physical and psychosocial conditions such as chronic pain, cardiomyopathy and impaired fertility [4,5,6,7,8,9,10,11,12,13,14,15]. Appropriate follow-up care is essential to mitigate these health problems, maintain health and preserve quality of life for survivors and their families [16,17,18].

High-quality follow-up care for CAYA cancer survivors is based on evidence-based guidelines. For long-term follow-up (LTFU) care (survivorship care more than 5 years after CAYA cancer diagnosis), guidelines for surveillance of late health problems have been developed and harmonised in Europe by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) in the ongoing PanCareFollowUp project (www.pancarefollowup.eu) and globally by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) with input from the Children’s Oncology Group (COG), Dutch Childhood Oncology Group (DCOG), Scottish Intercollegiate Guidelines Network (SIGN) and the UK Children’s Cancer and Leukaemia Group (UKCCLG) [19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38]. However, while CAYA cancer survivors need a continuum of survivorship care from the end of their cancer treatment throughout their lives, guidelines for short-term surveillance of health problems—the period from the end of treatment to 5 years after diagnosis—are currently lacking.

To address this gap, the European PanCareSurPass project (www.pancaresurpass.eu, Project Grant Agreement 899999) aimed to develop recommendations for short-term surveillance of health problems in CAYA cancer survivors. These recommendations for short-term surveillance of health problems will be relevant to the care of CAYA survivors from the end of treatment to 5 years after diagnosis. In addition, they can be implemented in the PanCare Survivorship Passport (SurPass) in Europe. The SurPass is a digital tool that contains the treatment summary of patients who have completed cancer therapy and provides a personalised survivorship care plan for late health problems and follow-up care based on the IGHG and PanCare guidelines [39]. This paper describes the development and results of the European harmonised guideline for short-term surveillance of health problems, including recommendations for surveillance of health problems and health promotion in CAYA survivors from the end of treatment to 5 years after diagnosis.

Methods

Guideline working group

A guideline working group was formed to develop the PanCare guideline for short-term surveillance of health problems. The working group consisted of 19 stakeholders (survivorship care specialists, researchers and survivor representatives) from 10 European countries. A core group of six people designed the methodology and guided the development of the recommendations.

Guideline methodology

The guideline working group first reviewed the PanCare guideline on LTFU care for CAYA cancer survivors [38]. This LTFU guideline incorporated 16 evidence-based global IGHG guidelines published up to 2020, as well as consensus-based recommendations for health problems for which there were no evidence-based IGHG guidelines. The working group then reviewed the newly published evidence-based IGHG guidelines from 2021 onwards [27, 29,30,31,32,33,34,35,36,37].

The group compiled a list of all relevant recommendations for health problems requiring surveillance strategies for the period from the end of treatment to 5 years after diagnosis. For each health problem, we considered the following key questions: (1) Who is at risk? (2) Which surveillance test should be used? (3) When should surveillance be initiated? (4) At what frequency should surveillance be performed? (5) What should be done when abnormalities are found? For health problems considered relevant, we adopted the IGHG guidelines [14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32]. Where IGHG efforts were still ongoing or not yet initiated, we used the consensus-based surveillance recommendations from the PanCare LTFU care guideline as a starting point [33]. For each topic of the LTFU care guideline, we determined whether the existing recommendations covered the period from the end of treatment to 5 years after diagnosis. If so, we adopted the recommendations. If not, we discussed the recommendations in the working group and adapted them based on clinical expertise. Specifically, we adapted the recommendations for short-term surveillance of health problems care with regard to the time of initiation and frequency of surveillance.

Internal and external consultation rounds

We organised five online meetings to discuss the draft recommendations within the working group. Each working group meeting covered approximately 5–6 health problems, and working group members were invited to comment on the draft recommendations in advance. After the working group meetings, we circulated a full draft of the recommendations to the PanCareSurPass Consortium and the PanCare Guideline Group for feedback. We collected feedback on the draft during a 2-week consultation period. A final online meeting was held to discuss the feedback received and to reach consensus on the wording of the recommendations. We made the necessary revisions to the recommendations based on the feedback received, resulting in the final version of the PanCare guideline on short-term surveillance of health problems. We circulated this final version for approval to the PanCareSurPass Consortium, the PanCare Guideline Group (a separate PanCare committee that promotes and supports the development and implementation of guidelines for CAYA cancer survivors in Europe https://www.pancare.eu/for-professionals/guidelines/) and the PanCare 2022 Board. The entire guideline development process lasted from April 2022 to August 2023.

Results

Overview of the PanCare guideline for short-term surveillance of health problems

The PanCare guideline for short-term surveillance of health problems for CAYA cancer survivors includes a total of 44 health problems. The guideline is organised according to the type of counselling or surveillance required, with 11 requiring “Awareness only”, 15 requiring “Awareness, history and/or physical examination without surveillance test”, 1 requiring “Awareness, history and/or physical examination with potential surveillance test” and 17 requiring “Awareness, history and/or physical examination with surveillance test”. The full guideline and the changes made from the LTFU care guidelines are documented in Online Resource 2. Table 1 provides a comprehensive overview of the recommendations for short-term surveillance that include surveillance testing.

Table 1 Overview of recommendations for short-term surveillance for health problems involving surveillance tests
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The LTFU care guidelines for the surveillance of hypothalamic-pituitary dysfunction, precocious puberty and ear problems included recommendations for the period after the end of cancer treatment and were therefore adopted. The LTFU recommendations for cardiomyopathy, pericardial and valvular heart disease, subsequent CNS neoplasms, male fertility problems, overweight and obesity, premature ovarian insufficiency and reduced bone mineral density were adopted without change.

Differences between recommendations for LTFU care and short-term surveillance for health problems

Several recommendations have been adjusted based on evidence and clinical knowledge regarding the timing and/or frequency of surveillance. Where the international guidelines recommend starting surveillance at entry into LTFU care, this has been extrapolated to start at the end of treatment. For pulmonary problems, the LTFU guideline suggests a pulmonary function test at the start of LTFU care. The short-term surveillance guideline suggests that a pulmonary function test should be performed either at the end of treatment or at the age of 6 years, whichever occurs last, depending on the clinical possibility of performing the tests.

In terms of surveillance frequency, the recommendations for physical examination and symptom history for craniofacial growth problems and osteonecrosis have been changed from at least every 5 years to at least annually. These adjustments reflect the urgency of these problems and recognise the likely impact of the pubertal phase, particularly for survivors within the < 5-year timeframe. In addition, osteonecrosis is more likely to occur in the first few years after relevant treatment (particularly with steroids). Similarly, the frequency of surveillance for thyroid function problems to conduct follow-up tests after radioiodine/MIBG therapy has been increased to assessments at 1, 3, 6 and 12 months after radioiodine/MIBG therapy and then annually for survivors ≤ 18 years of age, and at least every 2 years for survivors > 18 years of age.

In addition, for asymptomatic coronary artery disease, subsequent colorectal cancer, dyslipidaemia, thyroid cancer and subsequent female breast cancer, the recommended age to start surveillance is not relevant for the period between the end of treatment and 5 years after diagnosis. Therefore, these health problems do not require surveillance testing during the short-term follow-up period. However, although the incidence of subsequent neoplasms and coronary artery disease is relatively low in the first few years after diagnosis, it is still important for all CAYA cancer survivors to be aware of their potential increased risk and to report any new symptoms promptly.

Discussion

Providing a continuum of survivorship care for CAYA cancer survivors, starting at the end of treatment, is critical to improving their quality of life and overall health (see Fig. 1).

Fig. 1
figure 1

Visualisation of the cancer care continuum: from cancer treatment to follow-up care

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To date, current guidelines for survivorship care only cover survivors more than 5 years after diagnosis. This paper describes the work of the PanCareSurPass project to develop a guideline for short-term surveillance of health problems, focusing on addressing the knowledge gap in appropriate guidance for survivors immediately after treatment up to 5 years post-diagnosis. This guideline differs from existing tumour follow-up protocols, which monitor cancer recurrence, by focusing solely on the early identification of health problems caused by cancer treatment so that they can be treated appropriately. Moreover, many cancer treatment protocols assess potential treatment complications as a secondary objective. The guideline for short-term surveillance of health problems is not intended to replace these objectives but provides a minimum set of recommendations. Protocol groups decide their own approach, but we suggest that they start with these recommendations.

To develop the guideline for short-term surveillance of health problems, a working group of survivorship care experts and CAYA cancer survivor representatives collaborated using existing evidence-based IGHG and consensus-based PanCare recommendations for LTFU care. The short-term surveillance guideline covers both physical and mental health problems, as well as preventive measures such as health promotion and education. Ultimately, these recommendations are intended to be incorporated into the follow-up care of all CAYA cancer survivors and can be implemented in follow-up care plans such as the SurPass. Incorporating these recommendations into short-term follow-up and LTFU care plans aims to provide survivors, their families and healthcare professionals, particularly general practitioners, with the knowledge and tools necessary to make personalised recommendations through shared decision-making. This approach empowers survivors and their families to take responsibility for their health care, increases their understanding of health issues, and improves their quality of life [40, 41].

Currently, the IGHG guidelines focus predominantly on LTFU care, with the exception of ototoxicity [25], precocious puberty and hypothalamic-pituitary axis dysfunction [37]. For future updates of surveillance guidelines, it will be essential that guideline panels focus their literature searches and recommendations for surveillance of late health problems on both short-term and long-term follow-up. Furthermore, it is important to note that our expert panel represented the European perspective. Adaptations may be needed to ensure that this guideline is applied in other parts of the world.

In summary, the PanCare guideline for short-term surveillance for health problems, which covers the period from the end of treatment to 5 years after diagnosis, contains 44 recommendations covering awareness, history, physical examination and surveillance testing. The PanCare recommendations for short-term surveillance for health problems and the LTFU care guideline will serve as valuable tools for healthcare professionals to provide post-treatment follow-up care for CAYA cancer survivors. The implementation of these recommendations into individualised care plans and eHealth solutions such as SurPass is essential to provide high-quality, person-centred follow-up care and will improve the quality of life and care for CAYA cancer survivors worldwide.