Cystic fibrosis patients in the south west of England are among the first in the UK to benefit from ‘gold standard’ assessment of their aerobic capacity.
The cystic fibrosis team (left to right) clinical specialist Miriam Green, Phd student Owen Tomlinson, exercise therapist Ben Bowhay, physiotherapy team lead Jayne Trott and clinical specialist Charlotte Hawkins
The Association of Chartered Physiotherapists in Cystic Fibrosis (ACPCF) defines the gold standard as full cardio-pulmonary exercise testing (CPET) with gas analysis, performed on either a cycle ergometer or treadmill using an incremental ramp protocol to exhaustion.
The 2015 European statement on exercise testing recommends the use of the gold standard where possible. It also says that efforts should be made to implement this to enable the most accurate and effective assessment of exercise capacity and for exercise prescription. However, the association says that less than 10 per cent of cystic fibrosis centres can offer it.
Jayne Trott, the cystic fibrosis physiotherapy team lead at Royal Devon and Exeter NHS Foundation Trust, told Frontline that due to close links with Exeter University Child Health Exercise and Research Center (CHERC) the team is now offering gold standard as part of their routine service. The university’s PhD students helped with development and validation.
A pioneering team
Mrs Trott believes the team is one of the first centres in England to offer gold standard care as routine care rather than as field exercise tests in patients old enough to take part.
‘We are pioneering the way in terms of offering this routinely both at annual review and at clinically relevant times, such as at start or the end of intravenous drips, deciding on a percutaneous endoscopic gastrostomy (PEG) and referral for transplant.
The trust provides care for some 180 adults and children in Devon, parts of Somerset and Cornwall. To date some 80 patients have benefited from full gold standard assessment as part of their annual review. This is carried out by a Band 5 exercise therapist supported by a PhD student.
‘Patients are given the choice but of those who are offered a CPET, 86 per cent prefer this test to alternative field tests. And we have had enquiries from other centres asking how they can follow our direction,’ she said.
New NICE guidelines
At least one specialist physiotherapist should assess and advise cystic fibrosis patients in clinic, on admission, during pulmonary exacerbations and at annual review, says new guidance from the National Institute for Health and Care Excellence.
Advice should include airway clearance, nebuliser use, musculoskeletal disorders, exercise, physical activity and urinary incontinence.
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