Childhood cancer survivors' and their parents' experiences with participation in a physical and social intervention during cancer treatment: A RESPECT study.

AIMS: This study explores experiences of childhood cancer survivors and their parents with a combined physical and social activity intervention during treatment, including how the survivors and their parents perceive physical activity post-treatment. DESIGN: A process evaluation using semi-structured interviews. METHODS: Using a criterion-sampling strategy, 18 Danish childhood cancer survivors (aged 11-18 years) and their parents were interviewed from September 2019 through May 2020. Data analysis used an inductive thematic approach focused on meaning. RESULTS: Three themes emerged: (1) being physically active during hospitalization; (2) peers as motivators and (3) physical activity post-treatment. During hospitalization, daily motivation to do physical activity was dependent on the daily well-being, that is, presence of the side effects from the child's treatment. Healthy classmates provided distraction, reduced loneliness and promoted normality for those hospitalized. For most of the survivors, their healthy peers provided motivation for being physically active during treatment. When surplus energy was lacking, some survivors preferred doing physical activity alone with a professional. Those who were physically active in the hospital sustained being physically active post-treatment while their parents continued seeking advice about appropriate activity levels. CONCLUSION: Childhood cancer survivors and their parents benefited from the intervention which also provided guidance to remaining physically active post-treatment. This was particularly true for the participants with leukaemia. IMPACT: Healthcare professionals should support children with cancer to be physically active during hospitalization. Including social and physical components in their care plan and being aware of individual preferences is pivotal to improving the survivors' level of physical and social well-being during and post-treatment. PATIENT OR PUBLIC CONTRIBUTION: The participants were involved in designing the interview guides to ensure that the interview guides were understandable for the participants to provide rich descriptions of their experiences with a physical and social activity intervention during hospitalization.

A qualitative study of adolescent cancer survivors perspectives on social support from healthy peers - A RESPECT study.

BACKGROUND: Adolescents' psychosocial development is generally influenced by their peers. Those facing hospital-based cancer treatment are particularly challenged as they are isolated from their social network and lack sufficient coping resources. AIM: This study explores the adolescent cancer survivor's perceptions and experiences with healthy classmate socialization support efforts via hospital co-admittance, from diagnosis to reinstatement in school, as an intervention of the RESPECT (REhabilitation including Social and Physical Activity and Education in Children and Teenagers with cancer) Study. DESIGN: A phenomenological, descriptive study. METHODS: Using variation sampling, 14 adolescents (aged 14-19), who completed the RESPECT intervention (April 2016-July 2017), participated in qualitative, in-depth, semi-structured interviews that were thematically analysed. FINDINGS: Four themes emerged: (a) Ambassadors as liaison persons; (b) Ambassadors as promoters of normalization and identity continuity; (c) Ambassadors as 'behind the scenes' friends; and (d) feelings of vulnerability and inferiority. Ambassadors reinstated a sense of normalcy in the adolescents' daily life. They supported identity construction and served as liaison persons who buffered loneliness and social isolation as well as bridging a continued sense of belonging to one's school peer network. In contrast with other peers, ambassadors understood cancer-related issues, knowledge which they partially gained witnessing the impact of treatment-related side effects on their hospitalized classmates. However, the consequence of this trade-off was an asymmetry in their relationship, with the adolescents requiring a certain level of safeguard from their ambassadors to maintain equal power in the relationship. CONCLUSION: The ambassadors enhanced the adolescents' ability to cope with their altered social position during treatment and to psychosocially reinstate it on their return to school. IMPACT: Future interventions should offer opportunities for healthy peers to be educated in what it means to live with cancer. Future programs to sustain socialization in adolescents with cancer should involve healthy peers for the entirety of the treatment period.

Effects of a physical activity program from diagnosis on cardiorespiratory fitness in children with cancer: a national non-randomized controlled trial.

BACKGROUND: Children with cancer experience impaired cardiorespiratory fitness and physical function during and after treatment restricting their possibilities to engage in social activities including sport, leisure activities, and school. The objectives were to determine the effects of classmate-supported, controlled, supervised, in-hospital, physical activity program to preserve cardiorespiratory fitness and physical function from time of diagnosis in children with cancer. METHODS: National non-randomized controlled trial including schoolchildren aged 6-18 years at diagnosis treated with chemo-/radiotherapy. We included 120 of 128 eligible patients (94%) in the intervention group (62.5% boys, 11.2 ± 3.1 years) from East Denmark and 58 patients in the control group (57% boys, 11.0 ± 3.2 years) from West Denmark. Eight children from the control group withdrew from participation. The groups were comparable in anthropometrics and cancer diagnoses (p > 0.05). The intervention consisted of (i) supervised in-hospital physical activity from diagnosis and throughout intensive treatment, (ii) 90-min general educational session on cancer and therapy in the child's school class, and (iii) selection of two classmates as ambassadors who took turns to support the child's physical training during the daytime. The primary outcome was cardiorespiratory fitness (VO2peak, mL/min/kg) at 6 months after diagnosis (sex, age, diagnosis adjusted). Secondary outcomes were sit-to-stand, timed-up-and-go, handgrip strength, and balance test scores. RESULTS: Ambassadors were identified for all, and 2542 individual and 621 group training sessions were held. VO2peak deteriorated over time in the control group (- 0.17 [95% CI - 0.32 to - 0.02] per week, p = 0.02), but not in the intervention group (p = 0.14). At 6 months from diagnosis, VO2peak was higher in the intervention group (29.6 ± 5.6 mL/kg/min) than in the control group (22.1 ± 5.6 mL/kg/min) (p = 0.01), and the intervention group had a better physical function at 3 and 6 months (p < 0.0001). CONCLUSIONS: Peer-supported, supervised, in-hospital, physical activity is safe and feasible in children with cancer during treatment. Further, the results suggest that the intervention might mitigate impairments in cardiorespiratory fitness during treatment in children with cancer. TRIAL REGISTRATION: The study was prospectively registered on the 11 January 2013. Clinicaltrial.gov NCT01772849 and NCT01772862 .

Classmates motivate childhood cancer patients to participate in physical activity during treatment: A qualitative study.

INTRODUCTION: Children with cancer experience reduced physical fitness and compromised social relationships during and following intensive treatment. This may negatively impact their quality of life. As part of the RESPECT study, we explored the motivations for participation in a physical activity programme during treatment. METHODS: Thirteen semi-structured interviews were conducted with seven boys and six girls, diagnosed with paediatric 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. RESULTS: The qualitative analysis showed that children's motivations for engaging in the physical activity programme during intensive medical treatment were primarily influenced by (a) opportunity for physical activity with a classmate; (b) participation in group physical activity sessions; (c) support from significant others; and (d) improvement of physical well-being. Main barriers included (a) poor physical well-being; (b) compliance with medical procedures and being treated in protective isolation; and (c) limited physical activity facilities. CONCLUSION: Despite barriers, it is possible to motivate and engage children with cancer in physical activity during intensive treatment in a paediatric oncology ward. Physical exercise and activity should be recommended and promoted from diagnosis throughout the treatment period and should include psychosocial and professional support.

Testing physical function in children undergoing intense cancer treatment-a RESPECT feasibility study.

BACKGROUND: The physical function of children with cancer is reduced during treatment, which can compromise the quality of life and increase the risk of chronic medical conditions. The study, "REhabilitation, including Social and Physical activity and Education in Children and Teenagers with cancer" (Clinicaltrials.gov: NCT01772862) examines the efficacy of multimodal rehabilitation strategies introduced at cancer diagnosis. This article addresses the feasibility of and obstacles to testing physical function in children with cancer. METHODS: The intervention group comprised 46 males and 29 females aged 6-18 years (mean ± SD: 11.3 ± 3.1 years) diagnosed with cancer from January 2013 to April 2016. Testing at diagnosis and after 3 months included timed-up-and-go, sit-to-stand, flamingo balance, handgrip strength, and the bicycle ergometer cardiopulmonary exercise test (CPET). RESULTS: Of the 75 children, 92% completed a minimum of one test; two children declined testing and four were later included. Completion was low for CPET (38/150, 25%) but was high for handgrip strength (122/150, 81%). Tumor location, treatment-related side effects, and proximity to chemotherapy administration were primary obstacles for testing physical function. Children with extracranial solid tumors and central nervous system tumors completed significantly fewer tests than those with leukemia and lymphoma. Children with leukemia demonstrated reduced lower extremity function, that is, 24% reduction at 3 months testing in timed-up-and-go (P = 0.005) and sit-to-stand (P = 0.002), in contrast with no reductions observed in the other diagnostic groups. CONCLUSION: Children with cancer are generally motivated to participate in physical function tests. Future studies should address diagnosis specific obstacles and design testing modalities that facilitate physical function tests in this target group.

In sickness and in health: classmates are highly motivated to provide in-hospital support during childhood cancer therapy.

OBJECTIVES: Extended hospitalization for school-aged cancer patients increases their risk of social marginalization. School-aged children mature through peer-interaction, but healthcare providers fail to incorporate this in rehabilitation efforts. The RESPECT study offers classmates to cancer patients to become ambassadors during hospital stays. This study explores classmate decision-making patterns about ambassadorship. METHODS: An open-ended question was prospectively and consecutively provided to classmates (N = 221) (and parents) of 10 children diagnosed with cancer in 2014 and enrolled in the RESPECT study. Statements were analysed using thematic content analysis. RESULTS: Of 221 classmates, 140 responded (63%). Of these, 81 applied for ambassadorship (median 8/patient), 58 declined, one was undecided. Nine forms were incomplete; leaving 131 in total that revealed 303 statements for analysis. Five major themes emerged: existing friendship (132/303 statements), personal resources (academic, emotional and social) (107/303), attitudes towards the ambassadorship (34/303), hospital environment (18/303) and logistics (12/303). Of the classmates with pre-existing friendships, 77% applied for ambassadorship and 80% with a surplus of personal resources applied. These were predominant predictors for ambassadorship application. Classmate motives were condensed into four archetypes: pre-existing friendship with a surplus of resources (100% applied), non-friend classmates with a surplus of resources (63% applied), pre-existing friendship with limited resources (22% applied) and non-friend classmates with limited resources (0% applied). CONCLUSION: Classmates are highly motivated to support patients during serious illness, irrespective of pre-existing friendships. Ambassadors offer a novel in-hospital approach to promote rehabilitation in children with severe/chronic diseases. Results need validation in other settings. Copyright © 2016 John Wiley & Sons, Ltd.

Study protocol: Rehabilitation including Social and Physical activity and Education in Children and Teenagers with Cancer (RESPECT).

BACKGROUND: 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. METHODS/DESIGN: The RESPECT study is a 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. Primary endpoints are the level of educational achievement one year after the cessation of first-line cancer therapy, and the value of VO2max one year after the cessation of first-line cancer therapy. Secondary endpoints are quality of life measured by validated questionnaires and interviews, and physical performance. RESPECT includes a multimodal intervention program, including ambassador-facilitated educational, physical, and social interventions. The educational intervention includes an educational program aimed at the child with cancer, the child's schoolteachers and classmates, and the child's parents. Children with cancer will each have two ambassadors assigned from their class. The ambassadors visit the child with cancer at the hospital at alternating 2-week intervals and participate in the intervention program. The physical and social intervention examines the effect of early, structured, individualized, and continuous physical activity from diagnosis throughout the treatment period. The patients are tested at diagnosis, at 3 and 6 months after diagnosis, and one year after the cessation of treatment. The study is powered to quantify the impact of the combined educational, physical, and social intervention programs. DISCUSSION: RESPECT is the first population-based study to examine the effect of early rehabilitation for children with cancer, and to use healthy classmates as ambassadors to facilitate the normalization of social life in the hospital. For children with cancer, RESPECT contributes to expanding knowledge on rehabilitation that can also facilitate rehabilitation of other children undergoing hospitalization for long-term illness. TRIAL REGISTRATION: Clinical Trials.gov: file. NCT01772849 and NCT01772862.

Children with cancer and their cardiorespiratory fitness and physical function-the long-term effects of a physical activity program during treatment: a multicenter non-randomized controlled trial.

PURPOSE: We aimed to determine the effects of a classmate-supported, supervised, in-hospital physical activity program during treatment primarily on cardiorespiratory fitness and secondarily on physical function. METHODS: A multicenter non-randomized controlled intervention study including children diagnosed with cancer, 6-18 years at diagnosis treated with chemo-/radiotherapy. The intervention comprised (i) an educational session on cancer in the child's school class; (ii) selection of two "ambassadors"-classmates who were co-admitted, supporting the child's everyday hospital life; and (iii) supervised in-hospital physical activity from diagnosis and throughout intensive treatment. One-year post-treatment, physical testing included cardiorespiratory fitness (primary outcome), Sit-to-Stand test, Timed-Up-and-Go, and Handgrip Strength. RESULTS: The intervention group included 75 of 120 children (61% boys, 13.4 ± 3.1 years); the control groups included 33 of 58 children with cancer (58% boys, 13.5 ± 2.5 years), and 94 age- and sex-matched children without a cancer history. One-year post-treatment, cardiorespiratory fitness tended to be higher in the intervention group (37.0 ± 6.0 mL/kg/min) than in the patient control group with cancer (32.3 ± 9.7 mL/kg/min) (mean difference 4.7 [0.4 to 9.1], p = 0.034). The intervention group performed better in the secondary outcomes. Compared with community controls, both patient groups had lower cardiorespiratory fitness. The patient control group had lower Sit-to-Stand, Timed Up and Go, and Handgrip Strength, while the intervention group had strength comparable to that of the community controls. CONCLUSIONS: Peer-supported, supervised, in-hospital physical activity during treatment may improve cardiorespiratory fitness and muscle strength 1-year post-treatment in children with cancer; however, survivors continue to have lower cardiorespiratory fitness than community controls. IMPLICATIONS FOR CANCER SURVIVORS: Children with cancer may benefit from in-hospital physical activity in improving long-term cardiorespiratory fitness and muscle strength.

Cardiorespiratory fitness and physical function in children with cancer from diagnosis throughout treatment.

BACKGROUND: Children with cancer experience severe reductions in physical fitness and functionality during and following intensive treatment. This may negatively impact their quality of life. PURPOSE: To describe the physical capacity and functionality of children with cancer during and after treatment as well as the feasibility of physical activity intervention in the Rehabilitation including Social and Physical activity and Education in Children and Teenagers with Cancer study. PATIENTS AND METHODS: The study included children diagnosed from January 2013 to April 2016 with paediatric cancer or Langerhans cell histiocytosis, all treated with chemotherapy. Seventy-five of 78 consecutively eligible children (96.2%) were included. Median age was 11 years (range 6‒18). The physical capacity and function were assessed based on testing of physical strength, balance and cardiorespiratory fitness. Children were tested at diagnosis, 3 and 6 months after diagnosis and 1 year after cessation of treatment. The feasibility evaluation was inspired by the criteria for reporting the development and evaluation of complex interventions in healthcare. RESULTS: All children participated in the physical intervention programme with no dropouts. Strenuous physical exercise and physiological testing during paediatric cancer treatment was safe and feasible, with only five minor adverse events during the intervention. 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 to 22.7; p <0.0001), during treatment 3 and 6 months from diagnosis (difference 21.0 mL/kg/min, 95% CI 17.4 to 24.6; p <0.0001 and difference 21.6 mL/kg/min, 95% CI 17.3 to 25.8; p <0.0001, respectively) and 1 year after cessation of treatment (difference 6.9 mL/kg/min, 95% CI 1.1 to 12.7; p <0.0072). Furthermore, children with cancer experienced a pronounced decline in physical function. CONCLUSION: This study shows that it is safe and feasible to perform strenuous physical exercise and testing during paediatric cancer treatment and that children with cancer have significantly lower physical capacity and functionality than healthy age-matched norms. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT01772862.