Table 1.
Assessment instruments and time points of application
| Scales/Domains | Instruments | Reference | Application at | |||
|---|---|---|---|---|---|---|
| T1 | T2 | T3 | T4 | |||
| Patient-completed | ||||||
| Quality of life and health status | EuroQol instrument | [20] | x | x | (x) | (x) |
| PDQ-8a | [21] | x | x | x | x | |
| Meaning in Life | SMiLE | [22] | x | x | (x) | (x) |
| Satisfaction with Care | Likert scale | x | x | (x) | (x) | |
| Carer-completed | ||||||
| Quality of life and health status | EuroQol instrument | [20] | x | x | (x) | (x) |
| Patient Quality of Life | DEMQOL-Proxyb | [23] | x | x | x | x |
| Satisfaction with Support | Likert Scale | x | x | (x) | (x) | |
| Caregiver burden | Zarit burden scale | [24] | x | x | (x) | (x) |
| Clinician-completed | ||||||
| Activities of daily living | UPDRS (pt. II) | [25] | x | x | x | x |
| Schwab&England | [16] | x | x | x | x | |
| Demographic/social data | x | |||||
| Checklist of symptoms, treatments, tests | ||||||
| Comorbidities | Charlson-Index | [34] | x | x | (x) | (x) |
| Resource Utilisation questionnaire | [19] | x | x | x | ||
| Clinical rating/judgement | CGI | [26] | x | x | x | x |
| Hoehn and Yahr | [8] | x | x | (x) | (x) | |
| UPDRS (pts. I, III, IV) | [25] | x | x | (x) | (x) | |
| Cognitive assessment | MMSE+clock drawing+fluency | [27–29] | x | x | (x) | (x) |
| Pill questionnaire | [18] | x | x | (x) | (x) | |
| Neuropsychiatric and other non-motor symptoms | Neuropsychiatric Inventory (NPI-12) | [30] | x | x | (x) | (x) |
| Non-motor symptom scale | [31] | x | x | x | x | |
| Geriatric Depression Scale (GDS) | [32] | x | x | (x) | (x) | |
| Basic palliative assessment | ESAS-(PD) | [33] | x | x | (x) | (x) |
| Supine and standing blood pressure | x | |||||
| Evaluation of Implementation | x | |||||
ain patients with a diagnosis Parkinson’s disease only; bin patients with dementia instead of PDQ8 and EQ-5D; (×) optional; T1 = Baseline with randomisation, T2: 6 months after baseline (in-person for intervention participants only), T3: 12 months after baseline (telephone with patient and/or carer or optional in-person assessment), and T4: 18 months after baseline (telephone with patient and/or carer or optional in-person assessment). Abbreviations used: PDQ-8 The Parkinson’s Disease Questionnaire, short form, SMiLE Schedule for Meaning in Life Evaluation. Euroqol-Instrument (EQ-5D Index and visual analogue scale), DEMQOL-Proxy health-related quality of life for people with dementia - proxy version. CGI Clinical Global Impression, UPDRS Unified Parkinson’s Disease Rating Scale, UPDRS Unified Parkinson’s Disease Rating Scale, MMSE Mini Mental State Examination, ESAS-PD Edmonton Symptom Assessment System – Parkinson’s Disease