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Table 4 Overview of outcome measures in questionnaire-based assessments

From: Rationale and design to evaluate the PRIME Parkinson care model: a prospective observational evaluation of proactive, integrated and patient-centred Parkinson care in The Netherlands (PRIME-NL)

Persons with parkinsonism

Dimension

Outcome

Instrument

Health

Quality of life

Parkinson’s Disease Questionnaire-39 (PDQ-39) [26]

 

Depressive symptoms

Beck Depression Inventory II [27]

 

Anxiety

State Trait Anxiety Inventory for Adults [28]

 

Autonomic symptoms

Scales for Outcomes in Parkinson’s Disease—Autonomic Dysfunction (SCOPA-AUT)[29]

 

Cardinal motor features

Numeric rating scale for bradykinesia, tremor, rigidity, postural imbalance and Movement Disorders Society Unified Parkinson Disease Rating Scale (MDS-UPDRS) part II on motor functions in daily life [30]

 

Freezing

New Freezing of Gait Questionnaire [31]

 

Acceptance of Illness

Acceptance of Illness Scale [32]

 

Coping strategy

Ways of Coping Questionnaire [33]

 

Activities of Daily Living

Self-assessment Parkinson’s Disease Disability score [34]

 

Cognitive performance

Telephone Montreal Cognitive Assessment (MoCA) [35]

Patient experience

Integrated Care

Patient Assessment of Chronic Illness Care + (PACIC +) [36]

 

Continuity of care

Nijmegen Continuity of care questionnaire [37]

 

Self-management

Patient Activation Measurement (PAM) [38]

Carers

Carer experience

Carer burden

Zarit Carer Burden Inventory [39]

 

Self-management

Patient-activation measure – Caregivers (PAM-CG) [40]

 

Quality of life of Carer

Parkinson’s Disease Questionnaire-Carers [41]

 

Coping strategy of Carer

Brief COPE (Coping Orientation to Problems Experienced) [42]

 

Social support of Carer

Multidimensional Scale of Perceived social support [43]

Healthcare Professionals

Healthcare professional experience

Healthcare Professional wellbeing

Professional Fulfilment Index [44]

 

Integrated Care

Assessment of chronic illness care (ACIC) [45]

 

Shared decision making

The 9-item Shared Decision Making Questionnaire (SDM-Q-9) [46]