The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

Abstract

Background Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. Objective The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). Methods The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. Results Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. Conclusions The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation. International Registered Report Identifier (IRRID) DERR1-10.2196/35838

Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large‐scale interview study from the International PACCS Study

“…The present study is the part of a larger, international study: the Physical Activity and fitness in Childhood Cancer Survivors (PACCS) aiming to generate empirical evidence on PA (substudy 1), physical fitness (substudy 2), and facilitators and barriers to PA (substudy 3), to inform the development of evidence‐based PA interventions for young survivors (substudy 4). This is a qualitative study with semistructured, individual interviews with survivors and their parents enrolled in the PACCS study 35 …”

“…The ICF-CY framework can be used as a guiding framework to identify barriers and facilitators to PA at the level of the individual. Our findings may be useful to guide future qualitative and quantitative studies of PA in cancer survivorship and support intervention development 68. Survivors experience several barriers for participation in PA, where the main barriers are feeling physically weak and fatigued, thereby reducing the possibilities for participation in PA on equal terms with their peers.…”

“…This is a qualitative study with semistructured, individual interviews with survivors and their parents enrolled in the PACCS study. 35…”

Physical activity in 9–15 year-old pediatric cancer survivors compared to a nationwide sample

“…The study design in a cross-sectional comparison of cohorts and corresponding subgroups of two large studies investigating PA in children and adolescents. One is the large international multi-center study of young CCS called "Physical Activity and Fitness among Childhood Cancer Survivors" (PACCS) with study sites in Norway, Finland, Denmark, Switzerland, and Germany (Lie et al 2022). The other study including healthy children is the Motorik-Modul study (MoMo), which is a module of the nationwide German Health Interview and Examination Survey for Children and Adolescents (KiGGS) (Woll et al 2017(Woll et al , 2021.…”

Device-measured physical activity and cardiovascular disease risk in adolescent childhood cancer survivors. A physical activity in childhood cancer survivors (PACCS) study

“…This study is part of the international, cross-sectional, multicenter study Physical Activity in Childhood Cancer Survivors (PACCS) ( 24 ). The PACCS study consists of four work packages (WPs).…”