Children’s Physical Activity Following a Diagnosis of Childhood Cancer
Research type
Research Study
Full title
A Feasibility Study Exploring Children’s Physical Activity during Inpatient and Outpatient Care Following a Diagnosis of Cancer: A Case Study Series.
IRAS ID
274787
Contact name
Debbi Rowley
Contact email
Sponsor organisation
Sheffield Children's NHS Foundation Trust
Clinicaltrials.gov Identifier
CA19009, Funders Reference
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Research Summary
Physical activity (PA) based programmes are not yet a routine part of care for children with cancer despite emerging research documenting the potential benefits of PA, and that survivors of childhood cancer are less physically active than their peers. There is increasing evidence that childhood cancer may result in severe long term side effects, both physically and psychologically, and that additional PA may be beneficial in preventing or diminishing these consequences and improving health-related quality of life.
A previous study by the chief investigator “Physical Activity as Part of the Care Plan for Children with Cancer: A Survey of Health Professional’s Current Practice” has confirmed that PA advice is given on an ad-hoc basis nationwide and is not consistent across health care professionals for this population. The study also showed there is general consensus for the need for better quality advice, promotion and delivery of PA based programmes throughout paediatric cancer care pathways. (Rowley 2017)
In order to identify a better approach to PA based programmes we need to establish how physically active children are during active cancer treatment in inpatient (hospital) and outpatient (community/home) settings. We therefore propose to conduct a small case study series to establish the feasibility of measuring PA, using Actigraph accelerometers, in different age groups of children undergoing solid tumour cancer treatment.
The results will form the basis for further studies, identifying different approaches to increase PA within this population. The goal being to improve recovery, mobility, general well-being and PA behaviours in the longer term for this population.
Summary of Results
: All the Children, Young People (CYP) and families approached took part in the study suggesting that the study was not seen as overly burdensome for the CYP and their caregiver from the information they were given regarding the study.
One participant was withdrawn from the study after the inpatient phase due to a significant change in their medical status. This gave a retention rate of 83% for completion of all aspects of the study.Overall wear time of the accelerometer was low (average 87.73 hours over seven days of the inpatient phase and 33.79 hours over the seven days of the outpatient phase). For this reason, no minimum wear time was used for calculation of Physical Activity (PA) and all data from all participants where available was used.
The analysis of PA data showed that most of the time, participants were sedentary as both inpatients and outpatients, however the percentage of time they spent sedentary decreases on average by 13.04% during the outpatient phase. Conversely, the percentage of time spent in light and MVPA increased by 8.18% and 4.86% respectively between the inpatient and outpatient phase.
Device usability
In the youngest age group, one caregiver reported that the child kept on taking the belt off, particularly at home. She wondered whether this may have been related to the site of the participants tumour and the belt potentially being uncomfortable. In Children aged 5-11 years the device was reported as ‘fun’, ‘comfortable’ and ‘easy to wear’. Although there were some usability issues when one of the participants was unwell in hospital and couldn’t bear anything touching their skin so removed the device at this point. In the older age group, there were no common themes, with one participant finding the device so comfortable he forgot to wear it and the other reporting that it ‘annoyed him’ by ‘riding up’ and he didn’t want to wear it when out with his friends. Both participants in this age group felt their mobile phones would be better devices for recording activity data as they already had them on them all the time. No adverse events were brought to the attention of the researchers during the study.The Activity log was seen as appropriate by the participants/their caregivers, however more information was needed on the level of detail required. Both participants in the 11-15yr age group forgot to fill in the activity log.
All participants stated that the information sheets they were given about the study were appropriate for their needs and no further information was needed. No changes were recommended.
Physical activity
All participants were physically active to some degree prior to their diagnosis. The physical activities that the individual participated in were linked to their age.
The youngest participant was engaged in physical activities linked to play, e.g., going to playgroups or the park.
Participants in the 5-11year age group were engaged in physical activities within the school day, including active travel to and from school, active play during breaks at school, and school physical education lessons. Out of school PA involved extracurricular lessons for example swimming lessons or dance lessons, and regularly involved being active with their family or peers.
Participants in the older age group indicated that their physical activities related more to their interests and involved their friends/peers, for example VR gaming and football.Three strong themes ran through the qualitative data collected through the interview process when considering views and beliefs around PA following cancer diagnosis. Each will be presented individually.
Cancer related:
“there hasn’t been much opportunity to move” (Quote from Participant 005) All the participants reported that cancer and the treatment they were receiving had an impact on their ability to be physically active. All participants or their caregivers reported that energy levels and/or fatigue played a role in their ability to be physically active. This along with “feeling unwell” and the treatment (including surgery, and being attached to medical equipment), were the common themes running through the interviews linked to participants abilities.
Opportunity within the hospital and community environments were also a common theme brought forwards during the interview. The Caregiver of Participant 002 reported, “there’s so many screens now that kids are just on screens for like 12 hours a day in hospital”
Caregivers also reported that due to their child’s disease and its treatment CYP were often not in school or pre-school establishments which limited their exposure to PA. When they did attend school, Physical Education was not attended, and Caregivers often drove their children to school to conserve energy for the school day. Participants in the 5-11yr old age group became more active during individual face to face interactions with Therapy staff in the hospital, or when provided with equipment or structured opportunities. One caregiver also felt that permission needed to be given to schools to enable PA opportunities for CYP’s following cancer diagnosis.Peer support:
“it’s the friends around, that makes the big difference” (Quote from Caregiver of Participant 001).
All the participants and their caregivers interviewed commented on the fact that they were most active at home/in their communities when they were interacting with their peers. These interactions included both family and friend interactions and in one case included virtual interaction with peers. Peer support was seen to provide CYP’s with motivation to be more active, to play, or engage with exercise and PA.
As this study took place during the COVID-19 pandemic some participants felt that this had led to them becoming further isolated and therefore reduced their PA even further. “it’s the social side (isolation) that has been the hardest” (Quote from Caregiver of Participant 001).Motivation:
“I’m more eager to get active, more eager to get better.” (quote from Participant 005).
PA was seen as a positive way to improve health and mental wellbeing during cancer treatment, and this was a strong motivator for both CYP’s and their caregivers. “Activity is a huge part of recovery, and it’s kind of the one thing we feel we have control over”, (Quote from Caregiver of participant 002).
As well as this internal motivation, external motivating factors including peer support, as previously discussed, and motivation from health-care staff, including provision of opportunity, support and rewards were all seen as motivators for CYPs to be more active during their cancer treatment both within the hospital environment and at home.Feasibility
It is possible to recruit CYP with a new diagnosis of cancer that are undergoing treatment to a study using Actigraphs to explore their PA levels. This may have been enhanced as the researcher recruiting CYP’s was a familiar member of the multi-disciplinary team and all recruitment was done face to face. All CYP’s and their caregivers were given the opportunity to take the study information away with them before committing to the study. Two thirds of the participants or their caregivers were interested in receiving the study report, suggesting a high level of interest in their PA levels during cancer treatment.All but one participant completed the study showing a high retention rate to the study. The researcher took the decision to withdraw participant 004 from the study due to a change in their medical condition.
Adherence to wearing the Actigraph appeared to be age dependent, with the 5–11-year-olds wearing the Actigraphs for the most hours, both in phase 1 and 2 of the study. This may have been due to their interest in wearing the belt, or the fact that this age group still rely significantly on caregivers to support them in their day to day lives. Caregivers were therefore reminding and assisting the CYP’s to put on their belts during the day
In the younger age group, the caregiver of participant 006 reported.
“In the hospital she kind of accepted it because she expects something different to happen”
But she wouldn’t wear it at home, “her comfort zone”. Wear time may have also been affected by comfort in this case however as the participant’s tumour was abdominal and had led to a distended abdomen.In the older age group wear time was low. When asked the CYP’s reported that they ‘forgot’, or they didn’t want to wear it when they were going out. In this age group it is expected developmentally that CYP’s are more independent in their choices and require less parental support when preparing themselves for their day. This may have led to them to choosing not to wear the belt or forgetting to put it on. This fits with other reported Actigraph studies, where adherence to wearing the activity monitor has been lower in teenage populations (Crocker, Holowachuk and Kowalski, 2001). The other question to arise is whether the belt is too comfortable? And therefore, the CYP forgets to put it on. When this was discussed further both participants in this age group felt that a different device would be more suitable for them. This infers that a ‘one size fits all’ approach to PA measurement may not be appropriate and more consideration to developmental stage is needed during trial design. For example, although mobile phone apps do not provide as in-depth data on PA as an Actigraph it may be that using this form of device for older children may lead to a greater volume of data being collected and therefore may be more feasible and acceptable in this group.
Actigraph Data
The Actigraph data must be interpreted with caution, due to the low wear time and the number of participants within the study. The data is however consistent with anecdotal and observed clinical behaviours seen by the health-care team throughout their extensive experience and previous studies, (Rehorst-Kleinlugtenbelt et.al. 2019). The participants were not meeting National and International guidance on PA for their age groups in either environment. In the UK this is 60 minutes per day of Moderate or Vigorous PA per day for those aged 5 plus and at least 180 minutes of activity per day for those under 5 years old (UK chief MEDICAL officer guidance 2019). The data shows that the participants were largely sedentary both as inpatients and outpatients, however they were consistently more active when out of the hospital than when they were inpatients. This is likely linked with the qualitative outcomes including wellness, opportunity, environment and motivation. At home participants reported more opportunity for activity compared to in hospital. For example, participants attending school and having more contact with peers, motivated them to be active.Within the hospital setting the participants were more active when having face-to-face individualised physiotherapy intervention. This was in the form of games/activities which were then left in the room to enable independent activity. This was again supported by the interview data. The carer of participant 002 stated.
“So, you’re trying to be everything, you know, you’re like their dietician, you’re their nurse, you’re their physio, you’re trying to oversee all areas of mental, physical, emotional wellbeing and somebody else comes in and takes that pressure off.” Some of the participants did not however meet the criteria for referral to therapy services and therefore did not receive these sessions.Consideration needs to be given regarding the timing and type of interventions provided within the differing environments. Would offering peer/group sessions within the hospital setting, where possible, lead to increased activity? Or are there activities which the young person participates in at home which could be replicated within the hospital environment? There also needs to be strong consideration in providing age-appropriate activities both within the hospital and community. Younger children need to have the opportunities to actively play and with school aged children partaking in more structured PA sessions and ‘lessons’ appears more appropriate. This again should change when children become older, and their PA is more social and peer influenced.
There is unlikely to be a ‘one size fits all’ approach for this population, however by considering motivating factors from the out-of-hospital environment, individual programmes of activity may be able to influence PA behaviours within the hospital environment.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
20/NE/0049
Date of REC Opinion
2 Apr 2020
REC opinion
Further Information Favourable Opinion