Joaquim J Ferreira1,2, Ana T Santos1, Josefa Domingos1, Helen Matthews3, Tom Isaacs3, Joy Duffen3, Ahmed Al-Jawad4, Frank Larsen5, J Artur Serrano5,6, Peter Weber7, Andrea Thoms7, Stefan Sollinger8, Holm Graessner9, Walter Maetzler10. 1. Clinical Pharmacology Unit, Instituto de Medicina Molecular, Lisbon, Portugal. 2. Laboratory of Clinical Pharmacology and Therapeutics, Faculty of Medicine, University of Lisbon, Portugal. 3. The Cure Parkinson's Trust, London, UK. 4. HSG-IMIT, Villingen-Schwenningen, Germany. 5. NST-Norwegian Centre for Integrated Care and Telemedicine, University Hospital North Norway, Tromsø, Norway. 6. Department of Clinical Medicine, Faculty of Health Sciences, The Arctic University of Norway, Tromsø, Norway. 7. Hasomed GmbH, Magdeburg, Germany. 8. AbilityNet, London, UK. 9. Institute for Medical Genetics and Applied Genomics, University of Tübingen, Germany. 10. Hertie Institute for Clinical Brain Research, Department of Neurodegeneration, Center of Neurology, University of Tuebingen, Tuebingen, Germany.
Abstract
BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder with fluctuating symptoms. To aid the development of a system to evaluate people with PD (PwP) at home (SENSE-PARK system) there was a need to define parameters and tools to be applied in the assessment of 6 domains: gait, bradykinesia/hypokinesia, tremor, sleep, balance and cognition. OBJECTIVE: To identify relevant parameters and assessment tools of the 6 domains, from the perspective of PwP, caregivers and movement disorders specialists. METHODS: A 2-round Delphi study was conducted to select a core of parameters and assessment tools to be applied. This process included PwP, caregivers and movement disorders specialists. RESULTS: Two hundred and thirty-three PwP, caregivers and physicians completed the first round questionnaire, and 50 the second. Results allowed the identification of parameters and assessment tools to be added to the SENSE-PARK system. The most consensual parameters were: Falls and Near Falls; Capability to Perform Activities of Daily Living; Interference with Activities of Daily Living; Capability to Process Tasks; and Capability to Recall and Retrieve Information. The most cited assessment strategies included Walkers; the Evaluation of Performance Doing Fine Motor Movements; Capability to Eat; Assessment of Sleep Quality; Identification of Circumstances and Triggers for Loose of Balance and Memory Assessment. CONCLUSIONS: An agreed set of measuring parameters, tests, tools and devices was achieved to be part of a system to evaluate PwP at home. A pattern of different perspectives was identified for each stakeholder.
BACKGROUND:Parkinson's disease (PD) is a neurodegenerative disorder with fluctuating symptoms. To aid the development of a system to evaluate people with PD (PwP) at home (SENSE-PARK system) there was a need to define parameters and tools to be applied in the assessment of 6 domains: gait, bradykinesia/hypokinesia, tremor, sleep, balance and cognition. OBJECTIVE: To identify relevant parameters and assessment tools of the 6 domains, from the perspective of PwP, caregivers and movement disorders specialists. METHODS: A 2-round Delphi study was conducted to select a core of parameters and assessment tools to be applied. This process included PwP, caregivers and movement disorders specialists. RESULTS: Two hundred and thirty-three PwP, caregivers and physicians completed the first round questionnaire, and 50 the second. Results allowed the identification of parameters and assessment tools to be added to the SENSE-PARK system. The most consensual parameters were: Falls and Near Falls; Capability to Perform Activities of Daily Living; Interference with Activities of Daily Living; Capability to Process Tasks; and Capability to Recall and Retrieve Information. The most cited assessment strategies included Walkers; the Evaluation of Performance Doing Fine Motor Movements; Capability to Eat; Assessment of Sleep Quality; Identification of Circumstances and Triggers for Loose of Balance and Memory Assessment. CONCLUSIONS: An agreed set of measuring parameters, tests, tools and devices was achieved to be part of a system to evaluate PwP at home. A pattern of different perspectives was identified for each stakeholder.
Entities:
Keywords:
Outcomes assessment; Parkinson’s disease; delphi technique; patient-centered outcomes research
Authors: Margot Heijmans; Jeroen G V Habets; Christian Herff; Jos Aarts; An Stevens; Mark L Kuijf; Pieter L Kubben Journal: NPJ Parkinsons Dis Date: 2019-09-30