Rehabilitation Including Social and Physical Activity in Children and Teenagers With Cancer

Research output: Book/ReportPh.D. thesisResearch


During cancer treatment children have reduced contact with their social network of friends, and have limited participation in education, sports, and leisure activities. During and following cancer treatment, children describe school-related problems, reduced physical fitness, and problems related to interaction with peers. This may negatively impact their quality of life. The thesis explores the motivations to participate in the RESPECT physical activity program during treatment as well as describe the physical capacity and function during treatment in children with cancers, from diagnosis until one year after cessation of treatment compared with an age- and gender matched group of healthy children. The thesis also describes the safety and feasibility of the physical activity intervention in the RESPECT study. The RESPECT study is an ongoing nationwide population-based prospective, controlled, mixed-methods intervention study looking at children aged 6-18 years newly diagnosed with cancer in eastern Denmark (N=120) and a matched control group in western Denmark (N=120). RESPECT includes Danish-speaking children diagnosed with cancer and treated at pediatric oncology units in Denmark. From January 2013 to April 2016, 75 of 78 (96.2%) eligible children were included and participated in the intervention. The primary endpoint is VO2peak one year after the cessation of first-line cancer therapy. Secondary endpoints are quality of life measured by validated questionnaires and interviews, as well as physical performance. The intervention program was conducted by an exercise psychology consultant (TT, MSc, first author) in the pediatric oncology ward. The children with cancer were activated and motivated to be physically and socially active during treatment by professional and psychosocial support. The in-hospital intervention, from the time of diagnosis and throughout the treatment period, combined daily participation in supervised individual physical activity and groupbased physical activities twice weekly with other children. As part of the RESPECT study, each hospitalized child had two healthy classmates assigned as ambassadors. The ambassadors visited the child with cancer at the hospital (9 3 p.m.) at alternating two-week intervals during hospitalization and participated in the intervention program. The ambassadors act as a bridge between the children’s everyday lives at home and at the hospital, and serve as role models. Furthermore, they provide moral support, familiarity, and encouragement, and help to create a friendly educational, physical, and social environment for the child with cancer. Physical activity sessions focused on physical functionality and balance, muscle strength and cardio-respiratory fitness during treatment. The RESPECT study protocol (Study I) describes the challenges children with cancer encounter and how the study wants to re-think rehabilitation. We describe the intervention and the comprehensive monitoring taking place at diagnosis, three and six months from baseline and one year after the cessation of treatment. The RESPECT combines educational, physical, and social intervention components in rehabilitation of children and adolescents with cancer. It is the first study to examine the effect of an early rehabilitation program including the involvement of healthy classmates to help facilitate normalization of social life for children undergoing cancer treatment in hospital. Study II is a qualitative study examining motivational factors and barriers for participating in an early, structured, group-based and individualized physical activity intervention within the hospital setting from the time of diagnosis and throughout the treatment period as part of the RESPECT study. Thirteen semi-structured interviews were conducted with seven males and six females, selected by maximum variation sampling, diagnosed with pediatric cancer in 2013, and treated with chemotherapy (age 8-16 years; time from diagnosis to interview 6-16 months). Interviews were conducted in the children’s homes. The qualitative analysis, systematic text condensation, showed that children’s motivations for engaging in the physical activity program during intensive treatment were primarily influenced by 1) opportunity for physical activity with a classmate; 2) participation in group training; 3) support from significant others; and 4) improvement of physical wellbeing. Main barriers included 1) poor physical wellbeing; 2) compliance with medical treatment, medical procedures and being treated in protective isolation; and 3) limited training facilities in the pediatric oncology ward. The study shows that despite barriers it is possible to motivate and engage children with cancer in daily physical activity during intensive treatment in a pediatric oncology ward. The aim of study III is to describe physical capacity and function in children with cancers compared to healthy age- and gender-matched children by comprehensive physiological monitoring as well as evaluating the feasibility of the physical activity intervention in the RESPECT study. We were not able to evaluate the primary endpoint since the RESPECT study is an ongoing study; thus, results of the control group are not included in this report. Seventy five of 78 consecutively eligible children (96.2%) were included in intervention part of the RESPECT study between January 2013 and March 2016. All participants took part in the physical intervention program and there were no dropouts. Median age was 11 years (range 6‒18). Physical capacity and function assessment was based on testing of physical strength, balance and cardiorespiratory fitness. Children were tested at diagnosis, three and six months after diagnosis, and one year after cessation of treatment. The feasibility evaluation was inspired by the criteria for reporting the development and evaluation of complex interventions in healthcare (CReDECI). Strenuous physical exercise and physiological testing during pediatric cancer treatment were safe and feasible. Cardiorespiratory fitness was significantly lower in children with cancer than norms for healthy age-matched children at diagnosis (difference 19.1 ml/kg/min, 95% CI: 15.4-22.7; p<0.0001); during treatment 3 and 6 months from diagnosis (difference 21.0 ml/kg/min, 95% CI: 17.4-24.6; p<0.0001, and difference 21.6 ml/kg/min, 95% CI: 17.3-25.8; p<0.0001, respectively); and one year after cessation of treatment (difference 6.9 ml/kg/min, 95% CI 1.1-12.7; p<0.0072). Furthermore children with cancer experienced a pronounced decline in physical function. Children diagnosed with cancer have such low physical capacity and function that even small improvements can be considered vital, and may consequently mean the difference between a normal everyday life and a life where you are constantly dependent on others. The results from RESPECT strongly indicate that physical activity and psychosocial support to the children with cancer and their families, from diagnosis and throughout the treatment course will facilitate a less physical decline during treatment for cancer. Accordingly, supervised and individualized social and physical activities, involving peers and supported by a professional, should become an integral part of everyday life in pediatric oncology treatment. The results of this study are probably relevant and transferrable to similar contexts and settings relating to rehabilitation of children hospitalized with and burdened by long-term illnesses.
Original languageEnglish
Place of PublicationCopenhagen
PublisherDepartment of Pediatrics, Juliane Marie Center, University of Copenhagen
Number of pages138
Publication statusPublished - 2017
Externally publishedYes

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