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Fighting for aL f Unli e Standards of Care and Good Clinical Practice for the physiotherapy management of Cystic Fibrosis (2020)Fourth edition - November 2020 Editorial BoardLisa Morrison, Principal Physiotherapist, Queen Elizabeth University Hospital, GlasgowHelen Parrott, Clinical Lead and Physiotherapist, NuvoAirContributors Melony Archer, Shropshire Community NHS Trust (Section 13)Jane Bell, Belfast Trust, Northern Ireland (Section 14)Marie Bolton, Nottingham Children s Hospital (Section Infant Guidelines)Helen Brown, Papworth Hospital NHS Foundation Trust, Cambridge (Section 14)Catherine Brown, Heartlands Hospital, Birmingham (Sections 14,15)Fiona Cathcart, Royal Brompton & Harefield NHS Foundation Trust, London (Sections , ) Sarah Caunter, All Wales Adult CF Centre, Llandough Hospital (Sections , , 7,11)Melissa Craig, Liverpool Heart and Chest Hospital NHS Foundation Trust (Section 10)Tracey Daniels, York Teaching Hospital Foundation NHS Trust, York (Sections 7,13)Alice Day, Royal Devon & Exeter Hospital (Section )Emma Dixon, Royal Brompton & Harefield NHS Foundation Trust, London (Sections Infant Guidelines, 11,12)Nicola Duncan, Western General Hospital, Edinburgh (Sections , , 8)Helen Douglas, University College, London (Sections)

11 Management of specific issues 11.1 Urinary incontinence 11.2 Pregnancy 11.3 Liver disease 11.4 Haemoptysis 11.5 Pneumothorax 11.6 Critical care 11.7 Pre-transplant management 11.8 Physiotherapy intervention following bilateral lung transplantation 11.9 Palliative and end of life care 12 Complementary therapies 12.1 Acupuncture 12.2 Halotherapy 12.3 Relaxation techniques

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1 Fighting for aL f Unli e Standards of Care and Good Clinical Practice for the physiotherapy management of Cystic Fibrosis (2020)Fourth edition - November 2020 Editorial BoardLisa Morrison, Principal Physiotherapist, Queen Elizabeth University Hospital, GlasgowHelen Parrott, Clinical Lead and Physiotherapist, NuvoAirContributors Melony Archer, Shropshire Community NHS Trust (Section 13)Jane Bell, Belfast Trust, Northern Ireland (Section 14)Marie Bolton, Nottingham Children s Hospital (Section Infant Guidelines)Helen Brown, Papworth Hospital NHS Foundation Trust, Cambridge (Section 14)Catherine Brown, Heartlands Hospital, Birmingham (Sections 14,15)Fiona Cathcart, Royal Brompton & Harefield NHS Foundation Trust, London (Sections , ) Sarah Caunter, All Wales Adult CF Centre, Llandough Hospital (Sections , , 7,11)Melissa Craig, Liverpool Heart and Chest Hospital NHS Foundation Trust (Section 10)Tracey Daniels, York Teaching Hospital Foundation NHS Trust, York (Sections 7,13)Alice Day, Royal Devon & Exeter Hospital (Section )Emma Dixon, Royal Brompton & Harefield NHS Foundation Trust, London (Sections Infant Guidelines, 11,12)Nicola Duncan, Western General Hospital, Edinburgh (Sections , , 8)Helen Douglas, University College, London (Sections , 4) Elaine Edwards, Leeds Children s Hospital, Leeds (Sections Infant Guidelines, , 9, )Alison Gates, Oxford University Hospitals NHS Foundation Trust (Sections 2, , )Stephanie Graham, Great North Children s Hospital, Newcastle upon Tyne (Section Infant Guidelines)Nuala Harnett, Great North Children s Hospital, Newcastle upon Tyne (Sections Infant Guidelines, , )

2 Zoe Johnstone, Royal Hospital for Sick Children, Edinburgh (Section 15)Niamh Kiernan, Royal Hospital for Children, Glasgow (Section 10)Hannah Langman, University Hospital of South Manchester NHS Foundation Trust (Section )Margaret MacLeod, Aberdeen Royal Infirmary (Section 8)Richard Macphee, Wishaw General Hospital, NHS Lanarkshire (Sections , , )Stephanie Milroy, Queen Elizabeth University Hospital, Glasgow (Sections , , )Adrian Morris, Liverpool Heart and Chest Hospital NHS Foundation Trust (Section )Lisa Morrison, Queen Elizabeth University Hospital, Glasgow (Sections , , 4,14)Suzanne Palmer, Queen Elizabeth University Hospital, Glasgow (Sections , 8)Helen Parrott, (Section 2)Charles Reilly, King s College Hospital NHS Foundation Trust, London (Sections 4, )Clare Reilly, St. Vincent s University Hospital, Dublin (Section )Members of the physiotherapy Working GroupZoe Saynor, University of Portsmouth (Sections , 4)Pamela Scarborough, (Section 12)Gemma Stanford, Imperial College, London and Royal Brompton Hospital, London (Sections , , , , , 9)Julia Taylor, University Hospital of South Manchester NHS Foundation Trust (Section 10)Jayne Trott, Royal Devon & Exeter Hospital (Sections 6,7)Donald Urquhart, Royal Hospital for Sick Children, Edinburgh (Sections , 4)Louise Warnock,Oxford University Hospitals NHS Foundation Trust (Section , 9)Pip White, Professional Adviser, CSP, London (Section 15) Megan Wills, Papworth Hospital NHS Foundation Trust, Cambridge (Section 6)AcknowledgementsMany thanks to all the physiotherapists and other members of the cystic fibrosis (CF)

3 Multidisciplinary teams who contributed to the formulation of these guidelines. We appreciate all the comments received throughout the development of this document and acknowledge the wealth of expertise nationally. Special thanks to the Cystic Fibrosis Trust for their ongoing Foreword Document How to use this Review of the Grading scheme for recommenda- tions in the document2 physiotherapy National Standards of Care for people with Cystic Fibrosis (2020)3 Outcome measures Airway Induced sputum Exercise outcomes and exercise counselling4 Physical activity and exercise Exercise limitation in Evidence for Potential exercise-related risks5 Airway Active cycle of breathing Autogenic Positive expiratory Oscillatory devices- Flutter - Acapella - Cornet - Aerobika - Quake - Other oscillatory Extra-thoracic oscillations (high frequency chest wall oscillation)

4 Intrapulmonary percussive Postural Intermittent positive pressure breathing6 Sinus disease Symptoms and physiotherapy management7 Inhalation therapy Bronchodilator Drug response Inhaler Nebuliser Timing of Combining inhaled medication with airway clearance Cleaning and maintenance of equipment8 Oxygen therapy Emergency Long-term oxygen Nocturnal oxygen Oxygen and non-invasive Ambulatory Oxygen for air Oxygen equipment9 Non-invasive ventilation NIV for airway NIV for NIV for respiratory NIV for nocturnal hypoventilation10 Musculo-skeletal problems and postural management Posture and thoracic CFBD and Inflammatory joint disease and scoliosis Skeletal muscle Screening and prevention of MSK TreatmentContents11 management of specific Urinary Liver Critical Pre-transplant physiotherapy intervention following bilateral lung Palliative and end of life care12 Complementary therapies Relaxation Other complementary therapies13 Measuring Adherence to airway Adherence to exercise and Adherence to inhaled Why is adherence important?

5 Strategies to impact on adherence14 Infection Nebulisers and airway clearance Education and adherence to IPC People with CF and their families15 Independent and supplementary prescribing16 Glossary of abbreviationsAppendicesAppendix I physiotherapy Guidance Paper: Clinical Guidance for the physiotherapy management of Screened Infants with Cystic Fibrosis and Screen Positive Inconclusive Diagnosis (2020) Appendix II ExerciseIIa Schematic overview of how todetermine whether a maximal effort has been given and the cause(s) of any exercise Exercise Case reportIIc Case example illustrating an exercise-limited and deconditioned CF patientIId Improvements in exercise capacity and AT IIe Standard Operating Procedure for Maximal Cardiopulmonary Exercise Testing (CPET)IIf Cardiopulmonary Exercise Test Summary ReportIIg The Borg perceived exertion scaleAppendix IIIIIIa SNOT 22 IIIb Nasal rinsesAppendix IV MedicationsIVa DRA standard operating procedure IVb DRA standard operating procedure in times of COVID-19 IVc Drug response assessment (DRA)

6 Flowchart IVd CF physiotherapy inhaler/nebuliser follow-up recordIVe Example of a Medicine Administration Competency SOPIVf Example of Competency Assessment DocumentIVg Examples of flowcharts for nebulised/inhaled medications for people with CFAztreonam flowchartBramitob flowchartTymbraneb and Tobi flowchartColistimethate flowchartDnase flowchartHypertonic saline flowchartLevofloxacin flowchartIVh Nebulised/inhaled medications for people with cystic fibrosis overview Appendix V Manchester Musculoskeletal Screening ToolAppendix VI Summary of evidence-based best Practice guidelines relating to nebuliser hygiene in CF Appendix VII Nebuliser Manufacturers Cleaning InstructionsAppendix VIII ACT devices cleaning sheet1. Foreword Document developmentThis document is the updated Standards of Care and Good Clinical Practice for the physiotherapy management of Cystic Fibrosis (2017).

7 It incorporates relevant information from the ACPCF/Cystic Fibrosis Trust endorsed Standards of Care (2020) and Clinical Guidance for the physiotherapy management of Screened Infants with Cystic Fibrosis and Screen Positive Inconclusive Diagnosis 2020 (Appendix I) to complete a comprehensive support document for physiotherapists working in cystic fibrosis (CF). It covers infants, children and adults with contributors are professionals working in the specialist field of cystic fibrosis. The ACPCF acknowledges the invaluable input of other health professionals and have consulted in areas where additional expertise is pivotal, eg respiratory physiology. This document has been developed independently of any funding How to use this documentThe Standards of Care and Good Clinical Practice for the physiotherapy management of Cystic Fibrosis aims to be a useful tool and comprehensive reference document for all physiotherapists and clinicians involved in the delivery of care to people diagnosed with cystic fibrosis.

8 It can also be used as a reference document for people with CF and their families/carers. The endorsement process of the document by the Cystic Fibrosis Trust has included review by relevant experts as well as peer review. This document is intended to support physiotherapists to develop local guidelines tailored to their specific needs and circumstances in caring for people with CF. Good Clinical Practice points highlight areas of experienced Clinical Practice that are relevant to clinicians, but that do not currently have substantive evidence to support them. There are a number of appendices, which have been compiled by the authors and are currently in use in Clinical Practice . The updated Infant Guidelines are also included, which outline the recommendations for the management and ongoing care of newly diagnosed, possibly asymptomatic infants with CF and those who present with a screen positive but inconclusive Review of the documentAs we enter a new era of cystic fibrosis care and the implementation of modulator therapies, many aspects of care are likely to change with increasing regularity and it is anticipated that this will be need to be a live document with relevant changes made to each section as they are needed.

9 Cystic fibrosis transmembrane conductance regulator (CFTR) modulators are a class of drugs that act by improving production, intracellular processing, and/or function of the defective CFTR protein. These drugs represent an important advance in the management of CF because they target the production or function of the mutant CFTR protein rather than its downstream consequences. Their indications and efficacy depend upon the CFTR mutations present in each individual and for these reasons we will likely see personalised changes in the management of CF care, which will undoubtedly include physiotherapeutic Grading scheme for recommendations in the documentIn this document the evidence used to support the recommendations has been graded using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. GRADE gives the clinician a useful tool in making clear, pragmatic interpretations of strong versus weak recommendations.

10 As few areas of physiotherapy management in CF have sufficient and robust evidence, it is of paramount importance to inform the clinician about: the quality of the evidence (QoE) (high, moderate, low or very low); which outcomes are critical; and the overall strength of the recommendation (strong or weak) to better inform their Clinical reasoning and decision process. Although recommendations overall may be graded as strong (ie the degree of confidence that the desirable effects outweigh the undesirable) the quality of the evidence may be moderate or low, due to the methodological issues within the studies available. Where there is no evidence to either support or refute Practice , no recommendation is made. Additionally, there is an occasional requirement for further research into specific fields of physiotherapeutic management of CF and these points have been highlighted by the authors of the relevant physiotherapy National Standards of Care for people with Cystic Fibrosis (2020)How to use the standardsThe Standards have been developed in association with the following documents (note these may be updated or superseded since publication of this document), which should be consulted as required.


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