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]

*=outcomes that will be completed by a representative who knows the patient well, where the patient cannot self-complete; #=outcome measures which will also be assessed at 3, 6, 9, 15, 18 and 21 months. The following parameters will be assessed at baseline and/or at 12/24 months but are not outcome measures per se: fracture risk using FRAX* [45] and/or QFracture* [46] with bone densitometry where required; habitual dietary intake using the European Prospective Investigation into Cancer Food frequency questionnaire* [47]; comorbidity using Cumulative Illness Rating Scale-Geriatrics [48]; cognition using Montreal Cognitive Assessment (MoCA) [49]. Place and date of death, where applicable, will also be captured