Successful initiative for children with cystic fibrosis

Children with moderate to severe cystic fibrosis (CF) enrolled on a programme offering physiotherapy, dietary support and personal training sessions at their local gym, were found to spend less time in hospital receiving antibiotics, as well as boosting their exercise capacity.

The pilot study, published in the Journal of Cystic Fibrosis, estimated that the programme also saved around £7,000 per patient per year at Great Ormond Street Hospital (GOSH).

CF, a life-threatening condition, affects the lungs and digestive system by clogging them with thick mucus. Children with CF often have to stay in hospital for a few weeks at a time to receive intravenous (IV) antibiotics. The 12-month pilot Frequent Flyer Programme, so named because the children spend so much time in hospital, aimed to reduce the need for children and young people with CF to be admitted to hospital, allowing them to spend more time at home and at school.

Fourteen children and young people (aged 4-15) who had spent more than 40 days in hospital receiving intravenous antibiotics in the year prior to the study starting were followed. Free access to their local gym was arranged, where a specialist physiotherapist provided weekly supervised, personal training sessions along with a regular review of their home physiotherapy regimen. A specialist dietitian provided regular nutritional support and education.

The study resulted in a 21 per cent reduction in the total number of days patients received IV antibiotic treatment at GOSH, from 619 days in the preceding year to 478 in the pilot year, along with a 20 per cent reduction in home IV antibiotic treatment from 304 to 243 days collectively for all patients.

The children also showed a significant increase in their exercise capacity, which was determined by measuring their maximum oxygen uptake and the distance they walked or ran during exercise testing. Peak oxygen uptake increased by 13 per cent, and the researchers also saw a significant increase in the distance walked or run.

A handful of children struggled to maintain steady growth as a result of exercising more, and when necessary the dietitian prescribed additional calorie supplements to meet their higher energy needs. No significant increase in lung function was measured within the year, although in some children lung function was found to be more stable. Exercise capacity has been previously shown help to maintain or increase lung function in the longer term.

Overall, the study estimated a mean cost saving per patient of £13,700, where the average cost per patient was £60,200 before the study compared to £46,500 in the pilot year. After factoring in the set-up costs for the programme, plus estimated annual gym memberships, the average cost per patient would be £53,100, suggesting an overall cost saving of £7,100 per patient.

This was a small-scale trial with promising results, and we have now launched a larger randomised controlled trial, called INSPIRE-CF, to validate the results and recruit more children onto our tailored fitness programme. As with all these schemes, it is important to carefully monitor growth and body composition in children who regularly exercise, as greater energy demands may affect their body mass index (BMI). If our positive results could be replicated in other hospitals across the UK, the implications for cost savings to the NHS, along with improving the quality of life for children living with cystic fibrosis, would be extensive.

Sean Ledger, GOSH Specialist Physiotherapist and lead author of the study