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Table 1 Summary of data collection at each stage

From: Acceptability to patients, carers and clinicians of an mHealth platform for the management of Parkinson’s disease (PD_Manager): study protocol for a pilot randomised controlled trial

Participant group   Data capture at each stage
  Baseline During intervention, PD_Manager group from devices During intervention, control group symptom diaries Post-intervention, 2 week follow-up
Patient Age, gender, education, disease duration, disease stage (Hoehn and Yahr score), main symptoms (tremor, bradykinesia, rigidity, dyskinesia), more affected side, UPDRS scores, current medications, comorbidities, views on technology
Outcomes: EQ-5D-5L; PDQ-8; NMSS
Motor symptoms (gait, freezing of gait, bradykinesia, hypokinesia, dyskinesia, exercise); non-motor symptoms (cognition, sleep, mood) All symptom domains captured through the PD_Manager intervention were self reported in a motor diary [16] and a wellbeing map [17] including: on/off; speech; sleep challenges; cognitive issues; activities and physiotherapy Interviews on acceptability and ease of use of PD_Manager or symptom diary; usefulness of the education section of PD_Manager
Outcomes: EQ-5D-5L; PDQ-8 and NMSS
Changes in management plan and referrals
Caregiver Age, gender, education, views on technology No information is collected from caregivers in the PD_Manager group No information is collected from clinicians in the symptom diary group Interviews on acceptability and ease of use of PD_Manager or symptom diary; usefulness of the education section of PD_Manager
Outcome: Zarit Caregiver Burden Scale (using short version)    Outcome: Zarit Caregiver Burden Scale (using short version)
Clinician Qualifications, current role, number of Parkinson’s patients/week, length of time in practice, views on technology No information is collected from clinicians in the PD_Manager group No information is collected from clinicians in the symptom diary group Usefulness and value of the information gathered (PD_Manager and symptom diary) for influencing management decisions; changes in management, referrals made
  1. EQ-5D-5L EuroQoL-5Dimenions-5Levels, generic health-related quality of life scale [18,19,20], PDQ-8 Parkinson’s Disease Questionnaire-8, disease specific measure of health-related quality of life [21, 22], NMSS Non-Motor Symptoms Scale [23], UPDRS Unified Parkinson’s Disease Rating Scale [11]
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