Physical Activity and Fitness among Childhood Cancer Survivors

The PACCS project aims to develop evidence-based physical activity (PA) recommendations to improve the long-term care of childhood cancer survivors (CCSs). There are currently more than 5000 CCSs in Norway, and the majority is at risk of developing treatment-induced late effects (health problems). Late effects can have long-lasting consequences for cognitive and physical functioning, social participation, educational attainment and work ability. CCSs represent a constantly growing population in the society with high morbidity, premature mortality and increased uptake of social benefits. Options for preventing late effects are currently limited, but a few small-scale intervention studies indicate promising effects of PA on promoting physical functioning, health and quality of life (QoL). However, important knowledge gaps and methodological shortcomings remain, limiting the generalizability of the results. We have established an international consortium of clinicians and scientists across paediatric oncology (late effects), sports medicine and behavioural sciences. We regard collaboration between the regional pediatric oncology centres and municipality health care services, involving the users, to be essential to develop effective PA rehabilitation programs that can cost-effectively be implemented and maintained locally. The main objectives for the PACCS project have been: 1. Objectively determine levels of PA and sedentary time among CCSs versus references and identify associated physiological, psychological and social correlates (WP 1). We have included more than 472 participants with parents, mostly from Norway, but all sites (Finland, Denmark, Germany and Switzerland) have been recruiting participants. Preliminary data report increased sedentary time in CCSs compared to controls, particularly among brain tumor survivors. 2. Objectively determine physical fitness (PF) and identify physical/physiological factors limiting PF in CCS compared to matched controls (WP 2). In total, WP 2 has recruited 156 participants in Oslo, Bergen and Zürich. Preliminary results report generally reduced PF among the survivors and more reduced PF than healthy controls with a similar PA level. 3. Identify psychological, social and contextual factors associated with the level of PA and PF in CCSs (WP 3). We have included 22 Norwegian and 40 Danish CCSs and their parents in WP3. The survivors present many resources, but they struggle with every day activities particularly because of chronic fatigue. 4. Preliminary results from WP 1-3 have been used to develop a feasibility study on PA rehabilitation studies (WP 4), which opened in May 2021 in Oslo, Bergen, Turku and Essen (more than half a year delayed due to corona). The study will continue to July 2022, and it is too early to present preliminary results. Then, the ultimate goal of the PACCS project is that the results from the study will inform preparation for future well-designed large international RCTs on PA and PF in adolescent childhood cancer survivors.

Stadig flere barn og ungdom overlever alvorlige og livstruende sykdommer som følge av intensiv og kompleks behandling. Behandlingen har sin pris og vil for mange medføre helsepåvirkning i varierende grad. Noen vil også leve med følgetilstander som er svært alvorlige og til dels livstruende. Dette er tilstander som ikke lett lar seg kurere, men med forebyggende behandling kan sykdomsutviklingen utsettes og begrenses. Barn og ungdom som overlever kreft har høy risiko for seneffekter avhengig av type behandling, behandlingsintensitivitet og egne sårbarhetsfaktorer. Spekteret av påførte helseplager er stort og varierer blant annet fra kognitive utfordringer, hjerte- og karsykdom, hormonforstyrrelser, vekstpåvirkning, redusert organfunksjon, sekundær kreft, kronisk utmattelse til redusert livskvalitet og psykososiale utfordringer. De fleste av disse tilstandene kan ikke kureres, men med sunne livsstilstiltak og økt fysisk aktivitet kan utvikling av alvorlige helseplager ofte bremses og reduseres. Dette forskningsprosjektet med stort fokus på fysisk aktivitet og form hos barnekreftoverlevere har satt promotering av livsstilsfaktorer på agendaen ved barnekreftsentrene som har deltatt i studien. Formidling av tiltak og kommende resultater vil også få smitteeffekt til samarbeidende institusjoner, både i Norge, Norden og Europa. Engasjement og deltakelse i prosjektet har fått positiv omtale og mye oppmerksomhet blant brukerne og pasientorganisasjonene. Resultatet blir økt fokus på livsstilsfaktorer hos barnekreftoverlevere med positive ringvirkninger på deres helseutfordringer både på kort og lang sikt. I tillegg har det internasjonale samarbeidet i prosjektet dannet grunnlag for nye kommende og større prosjekter som sikrer tilstrekkelig antall deltakere for å gjennomføre randomiserte kontrollerte studier på en pasientgruppe som er sjelden i hvert land, men som med internasjonalt samarbeid gjør det mulig. På den måten kan intervensjoner for å redusere helseutfordringene hos barnekreftoverlevere studeres med tilstrekkelig akademisk styrke til å gi robuste svar som grunnlag for videre anbefalinger.

Over 5000 childhood cancer survivors (CCSs) are alive in Norway and the number is increasing. Up to 80% of CCSs are at risk of severe disease or treatment-induced late effects by the age of 45. Late effects impact everyday function, education, employment and quality of life. Options for preventing late effects are limited but physical activity (PA) and exercise training may reduce late effect risks, improve health and QoL. PA interventions could therefore provide inexpensive and safe rehabilitation with potential life-long effects, but is not a part of the follow-up care of CCSs in Norway or elsewhere. Moreover, important knowledge gaps and methodological shortcomings remain, including heterogeneity of samples, assessment methods and outcome measures. The PACCSs project will address these shortcomings by generating cutting-edge knowledge by: 1) determining levels of sedentary behaviour, PA and fitness, and a broad range of associated factors; 2) determining negative effects of the cancer treatment and late effects on CCSs physical fitness through extensive clinical and physiological laboratory tests; and 3) exploring the perceived facilitators and barriers to being physically active among CCSs. Together with CCSs, parents and municipality health care service, we will use this knowledge to develop a targeted PA rehabilitation intervention managed at the municipality level and test its feasibility. An interdisciplinary consortium of user-representatives and national and international world-leading scientists and clinicians has been established, ensuring access to the foremost expertise and large cohorts of CCSs. Our results will enable evidence-based PA recommendations and rehabilitation to be systematically implemented in follow up care, ultimately improving the long-term health and quality of life of CCSs in Norway and beyond. The PACCS project provides a unique opportunity to establish strong international collaborations to improve paediatric survivorship care.