Table 2 Outcome measures for patients which will be measured at baseline, 12 and 24 months
Domain | Outcome | Measurement tool/method where one is available |
|---|---|---|
Primary outcome measure | Goal attainment | Bangor Goal-Setting interview [19] |
Parkinson’s specific measures | Parkinson’s disease assessment | MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) [21] |
Non-motor symptom burden | MDS Non-Motor Rating Scale (MDS-NMS)* [22] | |
Parkinson’s-related quality of life | Parkinson’s Disease Questionnaire (PDQ-39)* [23] | |
Health | Fear of falling | Iconographical Fall Efficacy Scale (ICON-FES)-short version [24] |
Global impression of change | Patients’ Global Impression of Change (PGIC) Clinician Global Impression of Change (CGI-I) | |
Frailty | SHARE-FI 75+ (Phenotypic frailty tool) [25] Pictorial fit frail scale* [26] Clinical frailty scale [27] | |
Sarcopenia | SARC-F* and SARC-CalF* [28] | |
Malnutrition risk | Malnutrition Universal Screening Tool (MUST) | |
Nutritional risk | Seniors in the community: risk Evaluation for Eating and Nutrition (SCREEN II)-14 item version* [29, 30] | |
Delirium | 4AT tool for delirium assessment [31] | |
Physical performance | Physical performance | Short physical performance battery (SPPB) Time up and go test (TUG) |
Physical activity | Incidental and Planned Exercise Questionnaire for the Usual week (IPEQ-WA)* [32] | |
Endurance | Endurance measure (2-min walk test, 6-min walk for those who are sufficiently mobile) | |
Gait | Single and dual task gait assessments | |
Grip strength | Hand-held dynamometer | |
Falls# | N/A | |
Palliative measures | Advance Care Plan data | N/A |
Palliative symptom burden | Edmonton Symptom Assessment System Scale for Parkinson’s Disease (ESAS-R-PD) [33] Palliative outcome score-symptoms-Parkinson’s Disease (POS-S-PD) [34] | |
Presence of gold standard framework register | Hospice utilisation outside place of death | |
Healthcare contacts with hospice and / or palliative care services | Use of anticipatory medication | |
Social | Loneliness/social isolation | 3-item Revised-UCLA Loneliness Scale plus a single item direct measure of loneliness [35] |
Social participation | English Longitudinal Study of Ageing questions (ELSA)* [36] | |
Perceived social support | Multidimensional scale of perceived social support [37] | |
Coping strategy | BriefCOPE [38] | |
Acceptance of illness | Acceptance of illness scale [39] | |
Capability | ICEpop CAPability measure for Older people (ICECAP-O)* [40] | |
Patient activation | Patient Activation Measure (PAM) [41] | |
Economic measures | Health-related quality of life | EuroQoL 5D-5L health status questionnaire (EQ-5D-5L)* [42] |
Mortality# | N/A | |
Healthcare events (including elective & unplanned admissions, emergency department attendances, outpatient appointments, primary care contacts, investigations and prescriptions, discharge destination) | Captured from hospital and GP records and participant self-report | |
Process measures | Frequency of Parkinson’s follow-up and referral to, and review, by allied health professionals (intervention and control arms) | N/A |
Frequency and type of engagement with PRIME Parkinson care (intervention arm) | N/A | |
Experience of holistic patient-centred care | Patient Assessment of Chronic Illness Care measure (PACIC) - 26 item [43, 44] |