The long-term follow-up of childhood cancer survivors in Finland

The long-term follow-up of childhood cancer survivors in Finland

The prognosis of childhood cancer has improved during the last decades. Here, Dr Päivi Lähteenmäki discusses progress towards a structured long-term follow-up system after childhood cancer has been treated.

The prognosis of childhood cancer has improved during the last decades. Today, the five year survival has reached 80%. The number of childhood cancer survivors is constantly increasing. Today, there are approximately 4,600 adult childhood cancer survivors in Finland.

Good survival prospects raise important questions relating to late effects of cancer treatment. Research has shown that the majority of survivors1,2 will suffer adverse health outcomes and premature mortality3 compared with the population of same age. Chronic health conditions are common; 30 years after cancer treatment, 60–80% of the survivors will have at least one late complication1,2, but each specific type of late effect may be rare. Different psychosocial late-effects should also be taken into account4. Long term effects must particularly be considered when addressing complex multimodality treatments, and it is essential to take into account the interaction between aspects of disease, its treatment, host genotype, and health behaviours of the survivor (see Fig. 1).

The need for a structured long-term follow-up system for survivors has been recognised for some time5-7, and strategies for implementation have also been developed in Europe (see: Survivors suffering from late-effects may have difficulties in obtaining the correct diagnosis and treatment for their condition and, thus, they may have numerous contacts with different health-care providers before the condition is recognised.

In a common effort between national representatives of paediatric and adult oncology in Finland, the pre-existing international recommendations for determining the risk for late-effects were adapted to serve as a nation-wide guideline for healthcare authorities when planning the late-effect follow-up of former childhood and young adult cancer patients. Individual follow-up should be risk-based (see Fig. 1).

Key points in the follow-up work

Each of the five Finnish University Hospital districts have started a late-effect clinic for their catchment area after the statement of the working group was published in 2014.8 According to the Finnish expert group, the key points in the follow-up work should be:
• To ensure optimal physical and psychosocial health and quality of life (education, employment, avoiding social indifference)
• To improve and make easier the path of the survivor in the healthcare system (co-ordination of needed services)
• To create a healthcare tool for disseminating the data of each survivor to the different healthcare providers they are facing (a survivorship passport)
• To provide consultations and education based on evidence provided, e.g., by the International Guideline Harmonization Group (see: So far, guidelines for breast cancer, cardiomyopathy, premature ovarian failure, male gonadotoxicity, and thyroid cancer surveillance have been published. In progress are the guidelines for ototoxicity, central nervous system neoplasms, coronary artery disease, metabolic syndrome, pulmonary toxicity, hypothalamic-pituitary dysfunction, fatigue, mental health and psychosocial problems, obstetric care, bone toxicity, nephrotoxicity, and thyroid dysfunction surveillance

A national developer

In addition to the work performed at five follow-up clinics, the task of a national developer was given to the Western Cancer Center of Finland (FICAN West), which is hosted by Turku University Hospital. A center of excellence status included a project where we:
• Developed an eHealth-based system for contacts and data collection (including measurements of psychosocial problems) from the survivors aiming to survivor empowerment
• Developed an algorithm for calculating late-effect risk based on the electronic data in the hospital data lake
• Produced material for a net-based education directed to local healthcare providers – especially nurses but also doctors at local hospitals and in the primary healthcare setting
In this project, public web pages and information leaflets for patients and professionals have been created linked to FICAN-West.

Kaiku Health

The platform for our patient reported outcome measures was created with a digital health company Kaiku Health (see: With Kaiku Health we can easily communicate with our current and previous patients. Digital follow-up enables us to react timely to patients’ symptoms or other problems. We can guide the patient to the right place at the right time, and offer concrete support online. Depending on the situation, we either invite the patients to the clinic or guide them to primary healthcare. We are also able to connect the survivors to several national eHealth links, too. Ongoing communication with the patients also provides us with valuable information about new late-effects, which we can use even to develop cancer care.

Furthermore, Finland is among the leading countries in the electronic data management of health and wellbeing. The electronic patient record system has now developed to a point where it allows the centralised archiving of electronic patient data, as well as active use and storage of the data. The Patient Data Repository (Kanta Services) plays a key role in sharing information between healthcare service providers, and the patient’s information is always up-to-date and available in a treatment situation.

With BCB-Medical (see: we have now finalised a Kanta services compatible platform that allows us to create a survivorship passport after the end of patient’s cancer treatment.

Finally, the work for creating a risk calculation algorithm using electronic patient data has reached the publication phase.


1 Oeffinger KC, Mertens AC, Sklar CA, et al. ‘Chronic health conditions in adult survivors of childhood cancer’. N Engl J Med. 2006;355(15):1572-82
2 Geenen MM, Cardous-Ubbink MC, Kremer LC, et al. ‘Medical assessment of adverse health outcomes in long-term survivors of childhood cancer’. JAMA. 2007;297(24):2705-15
3 Kero AE, Järvelä LS, Arola M, et al. ‘Late mortality among 5-year survivors of early onset cancer: a population-based register study’. Int J Cancer. 2015 Apr 1;136(7):1655-64
4 Ahomäki R, Harila-Saari A, Matomäki J, Lähteenmäki PM. ‘Non-graduation after comprehensive school, and early retirement but not unemployment are prominent in childhood cancer survivors-a Finnish registry-based study’. J Cancer Surviv. 2017 Apr;11(2):284-294
5 Eiser C, Absolom K, Greenfield D, et al. ‘Follow-up after childhood cancer: Evaluation of a three-level model’. Eur J Cancer 2006;42:3186-90
6 Hudson MM, Landier W, and Ganz PA. ‘Impact of survivorship-based research on defining clinical care guidelines’. Cancer Epidemiol Biomarkers Prev. 2011;20:2085-92
7 Edgar AB, Duffin K, Borthwick S, et al. ‘Can intensity of long-term follow-up for survivors of childhood and teenage cancer be determined by therapy-based risk stratification?’ BMJ Open 2013;3:e002451.
8 Taskinen M, Vettenranta K, Jokinen E, et al. ‘Childhood and adolescent cancer was cured- how to support health in adulthood?’ (Finnish) Duodecim. 2014;130(22-23):2320-30

Päivi Lähteenmäki, MD, PhD
Senior Consultant
Department of Pediatrics and Adolescent Medicine
Turku University Hospital
+35 8231 30670
Tweet @TyksVsshp

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