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Advocacy Alert: The Cystic Fibrosis Foundation seeks your input on the draft manuscripts regarding the evolving CF care model:

Please Submit Comments by May 15th, 2024

APTA members have just informed us about a concern with two Cystic Fibrosis Foundation Care Model Position Papers that have been released for public comment. The members believe that the importance and scope of physical therapists practicing in Cystic Fibrosis Care Centers has been diminished. 

It is important to note that CF is much more than just a lung disease and there has been a long history of the evolution of PTs in the care of people with this disease.  As medical advancements have greatly improved the length and quality of life for people with CF, the role of PTs has shifted dramatically from focusing primarily on airway clearance interventions to the full scope of helping people with this complex medical condition live full and active lives, from newborns to aged seniors. CF is no longer a disease of childhood; more than half of the CF population in the United States is over the age of 18.

Common impairments faced by people with CF (that PT can address!):

  • overweight and obesity (optimizing body composition)
  • blood glucose dysregulation
  • dyslipidemia and cardiovascular disease
  • bone health (osteopenia, osteoporosis, arthritis/arthropathy)
  • pelvic health (urinary incontinence, pelvic pain)
  • chronic pain
  • anxiety and depression
  • cancer prevention (including colon cancer)
  • decreasing systemic inflammation
  • improving sleep
  • vestibular dysfunction from ototoxic drugs
  • dyspnea (including optimizing airway clearance and ventilatory muscle function)

The CF Foundation has supported PT's role related to exercise, pelvic health, pregnancy, motor development, pain management, palliative care, bone health, healthy aging and more.  However, a new Care Model Position Paper has been released for comment which significantly demotes and limits the scope of PT in CF Care Centers. 

Our colleagues have created a guide with suggestions for comments on the "Re-defining the Care Team" paper (see attachment). It is structured to match the format of the survey, making it as easy as possible for everyone to provide feedback. A second attachment is for the "Care Model" paper - much briefer, simply advocating to include exercise testing as part of maintenance health screenings for people with CF. References are included. The position papers and link to submit comments are below.

While we hope the CF Foundation will realize this 'oversight' and put PT on the core CF team where we belong, we cannot sit back and wait for this to happen.  Every single person who provides feedback will get us closer to being recognized for the unique, wide-ranging perspective PT can offer to help people with CF live their best lives!  

Thank you for your support - for taking the time to submit feedback on these draft position papers and for forwarding this along to others who may be interested in advocating for the PT profession. 

The Cystic Fibrosis Foundation seeks your input on the draft manuscripts regarding the evolving CF care model:

                    Submit comments here  BY MAY 15

Guide for Suggestions on Redefining the Care Team FINAL.pdf 
Key references to support routine exercise testing: 

Button BM, Wilson C, Dentice R, Cox NS, Middleton A, Tannenbaum E, Bishop J, Cobb R, Burton K, Wood M, Moran F, Black R, Bowen S, Day R, Depiazzi J, Doiron K, Doumit M, Dwyer T, Elliot A, Fuller L, Hall K, Hutchins M, Kerr M, Lee AL, Mans C, O'Connor L, Steward R, Potter A, Rasekaba T, Scoones R, Tarrant B, Ward N, West S, White D, Wilson L, Wood J, Holland AE. Physiotherapy for cystic fibrosis in Australia and New Zealand: A clinical practice guideline. Respirology 2016; 21: 656-667.

Hebestreit H, Arets H, Aurora P, Boas S, Cerny F, Hulzebos E, Karila C, Lands L, Lowman J, Swisher A, Urquhart D.  Statement on exercise testing in cystic fibrosis.  Respiration  2015;90:332-51 DOI: 10.1159/000439057   

Nixon PA, Orenstein DM, Kelsey SF, Doershuk CF. The prognostic value of exercise testing in patients with cystic fibrosis. N Engl J Med 1992; 327: 1785-1788.

Fernanda, M et al. Peak Oxygen Uptake and Mortality in Cystic Fibrosis: Systematic Review and Meta-Analysis. RESPIRATORY CARE • JANUARY 2019 VOL 64, 91-99. DOI: 10.4187/respcare.06185

Saynor Z, Gruet M, McNarry M, et al. Guidance and standard operating procedures for functional exercise testing in cystic fibrosis. Eur Respir Rev. 2023 Aug 9;32(169):230029

Gruet M, Saynor Z, Urquhart D, Radtke T. Rethinking physical exercise training in the modern era of cystic fibrosis: A step towards optimising short-term efficacy and long-term engagement. J Cyst Fibros. 2022; 21(2):e83-e98.