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

Hanne C Lie; Sigmund Anderssen; Corina Silvia Rueegg; Truls Raastad; May Grydeland; Lene Thorsen; Trine Stensrud; Elisabeth Edvardsen; Marie Hamilton Larsen; Ingrid Kristin Torsvik; Lars Peder Bovim; Miriam Götte; Päivi Maria Lähteenmäki; Susi Kriemler; Hanne Bækgaard Larsen; Martin Kaj Fridh; Kristin Ørstavik; Henrik Brun; Iren Matthews; Else Hornset; Ellen Ruud

doi:10.2196/35838

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

JMIR Res Protoc. 2022 Mar 8;11(3):e35838. doi: 10.2196/35838.

Authors

Hanne C Lie¹, Sigmund Anderssen², Corina Silvia Rueegg³, Truls Raastad⁴, May Grydeland⁴, Lene Thorsen^{5

6}, Trine Stensrud², Elisabeth Edvardsen⁴, Marie Hamilton Larsen¹, Ingrid Kristin Torsvik⁷, Lars Peder Bovim⁸, Miriam Götte⁹, Päivi Maria Lähteenmäki¹⁰, Susi Kriemler¹¹, Hanne Bækgaard Larsen^{12

13}, Martin Kaj Fridh¹², Kristin Ørstavik¹⁴, Henrik Brun¹⁵, Iren Matthews¹⁶, Else Hornset¹⁷, Ellen Ruud^{18

19}

Affiliations

¹ Department of Behavioural Medicine, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, Oslo, Norway.
² Department of Sports Medicine, Norwegian School of Sport Sciences, Oslo, Norway.
³ Oslo Centre for Biostatistics and Epidemiology, Oslo University Hospital, Oslo, Norway.
⁴ Department of Physical Performance, Norwegian School of Sport Sciences, Oslo, Norway.
⁵ National Advisory Unit on Late Effects after Cancer Treatment, Department of Oncology, Division of Cancer Medicine, Oslo University Hospital, Oslo, Norway.
⁶ Department of Clinical Service, Division of Cancer Medicine, Oslo University Hospital, Oslo, Norway.
⁷ Department of Pediatrics, Haukeland University Hospital, Bergen, Norway.
⁸ Department of Health and Functioning, Faculty of Health and Social Sciences, Western Norway University of Applied Sciences, Bergen, Norway.
⁹ Department of Pediatric Hematology/Oncology, Clinic for Pediatrics III, West German Cancer Center, University Hospital Essen, Essen, Germany.
¹⁰ Department of Pediatric and Adolescent Hematology/Oncology, Turku University Hospital, University of Turku, Turku, Finland.
¹¹ Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.
¹² Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital (Rigshospitalet), Copenhagen, Denmark.
¹³ Institute for Clinical Medicine, Faculty of Health Science, The University of Copenhagen, Copenhagen, Denmark.
¹⁴ Department of Neurology, Section for Clinical Neurophysiology, Oslo University Hospital, Oslo, Norway.
¹⁵ Department of Pediatric Cardiology, Oslo University Hospital, Oslo, Norway.
¹⁶ Department of Paediatric Allergy and Pulmonology, Oslo University Hospital, Oslo, Norway.
¹⁷ Norwegian Childhood Cancer Society, Oslo, Norway.
¹⁸ Department of Pediatric Hematology and Oncology, Oslo University Hospital, Oslo, Norway.
¹⁹ Institute for Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.

PMID: 35258456
PMCID: PMC8941432
DOI: 10.2196/35838

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.

Keywords: barriers; childhood cancer survivor; fatigue; intervention; physical activity; physical fitness; quality of life.

©Hanne C Lie, Sigmund Anderssen, Corina Silvia Rueegg, Truls Raastad, May Grydeland, Lene Thorsen, Trine Stensrud, Elisabeth Edvardsen, Marie Hamilton Larsen, Ingrid Kristin Torsvik, Lars Peder Bovim, Miriam Götte, Päivi Maria Lähteenmäki, Susi Kriemler, Hanne Bækgaard Larsen, Martin Kaj Fridh, Kristin Ørstavik, Henrik Brun, Iren Matthews, Else Hornset, Ellen Ruud. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 08.03.2022.