Summary
Research shows that survivors of childhood cancer have lower levels of fitness and also rate their physical health lower than their peers – the hospital team wanted to find a practical way of showing families that it is possible to get back to an active life. The first DIFY (Do It For You) Day was held at the English Institute of Sport, Sheffield in 2012, showcasing many different sport and leisure activities and actively encouraging patients (at all stages of treatment and follow-up) and families to try them out. The response was overwhelmingly positive, with many parents appreciating the opportunity for their children to try out new activities in a safe and supportive environment.
Challenge
Survivors of childhood cancer are known to rate their physical health below that of population norms, and have also been found to show lower levels of physical function and fitness compared to ’healthy children’. Cancer and its treatment predispose individuals to late morbidity – this is particularly true for children who received intensive treatment. Late effects that have the potential to impact on physical functioning include cardiopulmonary toxicity, endocrinopathies and neurocognitive dysfunction. Treatment for childhood cancer also impacts on future psychosocial functioning with problems ranging from distorted body image and loss of confidence to learning difficulties and post-traumatic stress disorder.
Objectives
To address the health inequality between childhood cancer patients/survivors and healthy peers by encouraging patients to increase their activity at all stages of their treatment and follow-up. To hold a family orientated event which could help to strengthen relationships within the family.
Solution
We provided a wide range of sporting and recreational activities for our service users and their wider families to participate in over the course of the DIFY days, including: athletics, judo, dance, disc golf, rugby, cricket, archery, Cyclists Fighting Cancer, RSPB, cheerleading, squash, table tennis, belly dancing, football, martial arts, wheelchair basketball, basketball, tennis, climbing wall, graffiti art and arts & crafts that encouraged getting out into the countryside around Sheffield. There were no time limits placed on how long any one individual could spend on any one activity. We also brought everyone together after lunch to give them the opportunity to run around the 200m track with the support and encouragement of everyone at the event. All were rewarded with a DIFY medal in recognition of their participation and efforts.
Results
Each year we ask all attendees (children, young people and parents) on the day to complete an evaluation form before they leave the venue. We have consistently received 100% positive evaluation of the day with one child being talent spotted for an English disability athletics talent day.
Learnings
DIFY 2012 was the first event of its kind in the paediatric oncology community but similar events could be set up by other units to support patients and their families in leading more active and healthy lives and giving them confidence to get involved with local sports and activity groups. Likewise it is very transferrable to other chronic disease groups – and showed the wider community a positive side to childhood cancer, highlighting what can be done rather than focusing on limitations. Further research is required into whether activity days are a cost-effective intervention to improve the general health and well-being of survivors of childhood cancer, potentially reducing future healthcare cost and cutting barriers to participation. Our current research project is quantitative in nature and we would like to perform further research looking more at the qualitative features of the day, specifically around Quality of Life. We are collaborating with health researchers at Sheffield Hallam University to address how we design this.Evaluation
A single centre questionnaire-based longitudinal study looked at activity levels of Children & Young People (CYP) before and after an intervention (DIFY 2013). The self-reporting questionnaire incorporated the Godin Leisure-Time Exercise Questionnaire which has been validated across age groups and used extensively in physical activity research. This has been adapted to take into account availability of local sports and activities. There was no control group. Parents completed questionnaires for CYP < 11yrs; parents and Young Person (YP) completed questionnaires if aged ≥ 11yrs and < 16yrs. YP aged ≥ 16yrs completed their own questionnaires. Subsequent questionnaires were sent to the home address of the CYP and their parent or carer at 3 further time points at 3(TP1), 6(TP2) and 12(TP3) months following the DIFY Day in 2013. Primary outcome measure was to assess whether an annual community based sport and activity day (DIFY), organised and attended by members of cancer healthcare team, increases levels of physical activity in CYP treated for childhood cancer. We recruited 68 patients to the study with a mean age of 9.8 years ranging from 4-18. 60% were male. Diagnoses were varied and representative of the population. 74% had completed their treatment. 54% reported significant ongoing health problems at the time of the initial questionnaire. We had a 68% response rate, which was maintained through the questionnaires at 3, 6 and 12 months which equates to 47 patients. Increased levels of exercise are observed, with an effect size of +0.43 standard deviations between baseline and T3. This is stronger still when the group was split with the on-treatment sample. Unfortunately this did not reach statistical significance due to sample size, however it does demonstrate a positive trend.
