CLINICAL GUIDELINE FOR PHYSIOTHERAPY TO PATIENTENS WITH ALS Physical training and instructions to patientens with ALS Signe Versterre, Physioterapist, stud.cand.scient. in physiotherapy Hilleroed Hospital and Unit for Neurorehabilitation, Gladsaxe Municipality.
CONTENTS Background Method Results Evaluation Setting goals
CLINICAL GUIDELINE FOR PHYSIOTHERAPY TO PATIENTENS WITH ALS Team: Lise Buus, MPH, Quality - and developmental physiotherapist, Department of Neurology, Hilleroed Hospital, Hans Lund, Associate professor (Physiotherapist, ph.d.) at resource unit for musculoskeletal function and Physiotherapy, University of Southern Denmark, professor II, Høgskolen in Bergen, Norway. Ole Gredal, Physician Dr.med., Rehabilitation Center for Neuromuscular Diseases. (Physiotherapists in the Danish ALS-teams)
BACKGROUND
METHOD Purpose: To give physiotherapists in Denmark an evidence based platform for treating and evaluating patients with ALS. The goal is that the patients stay independent in ADL as long as possible and to remedy the consequences of the progressive disease. Method: A literature study with involvement of the ALSphysiotherapists and the patients with ALS
METHOD Included studies: 5 about exercise ( 3 RCT, 1 CCT, 1 CR) 10 about chest physiotherapy (incl. 2 RCT on IMT) 4 about ALSFRS-R Methodological quality judgement of all included studies RCT judged using Cochrane Risk og Bias Tool. Studies of good quality but the sample is small and the dropout rate is high>20-30%, caused by the progression of the disease.
METHOD Publication Metaanalyse, systematic review Randomised controlled trial Controlled, not randomised trial Cohort study Diagnostic tests (direct diagnostic method) Case-control investigation Diagnostic tests (indirect method) Decision analysis Descriptive investigation Evidence level Evidence strength Ia Ib IIa IIb IIb III III III III A B C Minor reports, reviews Expert assessment, leading article IV IV D Source: Sekretariatet for Referenceprogrammer: Vejledning i udarbejdelse af referenceprogrammer, SfR 2004
THE SYMPTOM PHASES JP Van Den Berg et al (2004) has described the phases a patient with ALS goes through: Diagnostic phase Rahabilitation phase: Phase 1 The patient is independent Phase 2 The patient is independent with aids and appliances Phase 3 The patient is dependent Terminal phase
METHOD Involvement of the ALS-team physiotherapist: Questionnaire about daily practice Workshop with focus on discussion of evidence and treatment strategies Qualifying the clinical guideline by testing it in clinical practice
RESULTS Inspiratory muscle training (IMT) 2 RCT 2 different results despite similar intervention 2012: concludes no effect for sure after 8 months of IMT (B). The European guideline concludes the effect of IMT not is proven (D) This clinical guideline recommend not to use IMT in the exercise program until it is proven to have an effect worth the effort.
RESULTS Recommendations from the clinical guideline (in review): Unpublished data
RESULTS Unpublished data
RESULTS Unpublished data
RESULTS Patient involvement: Focus group interview with 2 patients and 2 spouses. Consultations from 4 patients. Contact with a physiotherapist with knowledge and experience with ALS Easy understandable written information about exercise and ALS Information on assistive devices and compensation strategies Instruction in self-training Adjustments in the self-training programme as the disease develops Elevation of extremities to prevent or treat oedema Stretching morning, evening and after training to prevent cramps Loosen tensions in the neck and jaw if the patient have dysartria
EVALUERING Broek-Pastoor et al (2013) mention that there is situations where the physiotherapist has to use tests. But use it wisely as it can be unnecessary confrontation for the patient. Test: Timed up and Go risk of fall ROM joint mobility FVC lying and sitting respiratory function Muscle power testing 0-5 ALSFRS-R functional level (prognosis, research) Source: http://www.als-centrum.nl/
SETTING A GOAL Phase 1 The patient is independent The goal is to keep an active lifestyle and good aerobic capacity. Might use walking device and/or orthoses. Phase 2 The patient is independent with aids and appliances The goal is being able to perform ADL, instruction in restoration of ROM, keeping an active lifestyle using energy saving compensations. Hydrotherapy can be considered if problems with spasticity, cramps and stiffness. Phase 3 The patient is dependent The goal is to optimize the home situation and supply with assistive devices, prevent oedema/contractures/pressure ulcers. Stay as active as possible in ADL.
CONCLUSION Help them keep an active lifestyle to avoid inactivity
QUESTIONS?