A group of global experts spent a decade developing a clinical assessment guide to help influence fitness instruction for patients with cystic fibrosis. People with cystic fibrosis (CF) will benefit from better treatment as worldwide specialists develop clinical practice guidelines for exercise assessments.
The European CF Society Exercise Working Group (ECFS) publication, directed by Dr. Zoe Saynor of the University of Portsmouth in England, includes detailed advice and instructions for health and care workers conducting exercise testing on people with the illness.
CF affects around 11,000 persons in the United Kingdom and 100,000 people worldwide. A defective gene causes the hereditary disorder, which impairs the flow of salt and water across cell surfaces. It is a multisystem chronic disorder in which a gene mutation causes an accumulation of sticky mucus in the lungs and digestive system, resulting in a variety of difficult symptoms.
Our goal is that all people with CF of an appropriate age have access to regular exercise testing to better understand their health and be given individualized exercise advice.
Dr. Saynor
While there is no cure, CF can be managed with a variety of treatments, including physical activity and exercise. NICE guidelines, CF UK Trust physiotherapy management guidelines, and international guidelines all recommend that persons with the illness undergo frequent exercise testing.
These tests include establishing aerobic fitness, measuring performance, and assessing muscle strength. The tests are also able to assist in evaluating health trends, response to treatment, and health outlook. However, many people across the world don’t have access to routine testing, and execution of the testing has inconsistencies across CF centers.
Clinicians are increasingly using exercise tests to assess exercise performance in patients with the disease. There has been a dearth of worldwide uniformity up until now, resulting in certain people benefiting more than others.
Extensive study conducted over a ten-year period resulted in standard operating procedures that can be used by clinicians all around the world, including low and medium-income/resource-deprived countries. More than 60 experts from the United Kingdom, France, America, Switzerland, Germany, Australia, and other nations collaborated on the text, which was published in European Respiratory Reviews.
“The big focus of the project was to change and improve clinical practice across the world, so we’ve been working together collectively for a number of years,” said Dr. Saynor from the University of Portsmouth’s School of Sport, Health, and Exercise Science. We intended to include colleagues from other medical care systems, as well as from low and middle-income nations, to ensure that our ideas received as much stakeholder input as possible.”
“Our goal is that all people with CF of an appropriate age have access to regular exercise testing to better understand their health and be given individualized exercise advice.” A recent survey by specialist CF clinics in the UK revealed that the majority now offer some exercise testing and training advice for people with the condition.
“We’ve seen some progress, but nowhere near the amount we should have seen over a ten-year period,” Dr Saynor added. “According to current guidelines, every person with cystic fibrosis should be able to participate in an exercise test at least once a year.” That is not the case in most places of the world, including many clinics in the United Kingdom. When it comes to exercise and activity regimens, it’s critical that everyone is on the same page so that the quality of care doesn’t differ depending on where a person comes from.”
The clinical practice guidelines include useful insights, test instructions, and a list of regularly used validated tests. The publication also outlines previously utilized tests that are no longer suggested for people with cystic fibrosis, as well as areas that need more research. It is the result of a multidisciplinary panel of physiotherapists, exercise scientists, and clinicians from the European CF Society Exercise Working Group.
A number of hospitals in the United Kingdom have begun to implement the principles, and the team has been delivering physiotherapy educational sessions for clinicians at international conferences and events, as well as producing free online materials.
Deputy Coordinator of the ECFS Exercise Working Group, Dr. Don Urquhart from the University of Edinburgh, said: “We want everybody with CF to be able to have access to an exercise test and an exercise training program within the next few years.
“There is still a lot we don’t yet know about people living with CF, but exercise is becoming increasingly important in the management of the condition. We hope that these guidelines will help improve confidence and understanding by having everyone undertake tests in a standardized manner.”
“Global standardization across many aspects of physiotherapy management in CF is a strong focus for clinicians in the rapidly developing and changing landscape of this chronic condition,” said Jenny Hauser, President of CF Physio. Moving toward international consensus on the use of validated exercise tests, standardized protocols, and objective measurements in exercise testing will aid in the development of robust multicentre research possibilities.”
“The guidelines will improve practice equity across CF centers and will assist clinicians in appropriately supporting their patients in developing individualized exercise programs for improved health outcomes.”
