Live well with Parkinson's

Live Well with Parkinson’s (part of the program: personalised care for people with Parkinson’s Disease: PD-Care WP4)

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN92831552

Enrollment

338

Registered

2021-10-26

Start date

2021-11-01

Completion date

Unknown

Last updated

2026-08-10

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Parkinson's Disease Nervous System Diseases Parkinson disease

Interventions

The intervention consists of access to the ‘Live well with Parkinson’s’ toolkit (either online or paper format) and supporter sessions. The toolkit was co-designed with people with Parkinson’s, carers

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: Community-dwelling adults with a confirmed diagnosis of Parkinson’s Disease, (defined using UK Brain Bank Criteria), including those with dementia diagnosed at least 1 year after Parkinson's diagnosis

Exclusion criteria

Exclusion criteria: 1. Atypical Parkinsonism 2. Currently an inpatient or living in a care home 3. Life expectancy <6 months

Design outcomes

Primary

Measure	Time frame
Quality of life measured using the Parkinson's Disease Questionnaire (PDQ-39) at baseline, 6 and 12 months	—

Secondary

Measure	Time frame
All measured at baseline, 6 and 12 months: From people with Parkinson’s: 1. Non-motor Parkinson’s symptoms measured using Movement Disorders Society - Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Part I and II (Mentation, Behaviour, Mood and ADL). 2. Motor Parkinson’s symptoms measured using MDS-UPDRS part 3 (motor), part 4 (motor-complications including Off-time) and total score 3. Non-motor Parkinson’s symptoms measured using Non-Motor Symptoms Scale (NMSS, 30 items) 4. Quality of life measured using EQ-5D-5L: Quality of life (5 items and visual analogue scale) 5. GHQ12: Psychological well-being (12 items) 6. Valuation of Informal Care measured using Client Service Receipt Inventory-shortened, adapted for Parkinson’s from iMTA Valuation of Informal Care Questionnaire (iVICQ), Health/social care resources, out of pocket costs, financial impact on carers, welfare payments and living arrangements 7. Self-Efficacy for Managing Chronic Disease (6- Item Scale) 8. ICECAP-O: capability (5 items) 9. Patient activation measured using Patient Activation Measure (PAM) 10. Medication, deaths measured using patient records 11. Cognition measured using MoCA at baseline only. Health economic evaluation will include incremental cost per quality-adjusted and capability-adjusted life year gained from i) health/social care perspective and ii) societal perspective and a decision-analytic model extrapolating costs/consequence beyond the trial. From carers: 11. Carer burden measured using Zarit carer burden inventory (22 items) 12. Carer quality of life measured using Carer Quality of Life questionnaire for Parkinsonism (26 items)	—

Measure

Time frame

All measured at baseline, 6 and 12 months: From people with Parkinson’s: 1. Non-motor Parkinson’s symptoms measured using Movement Disorders Society - Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Part I and II (Mentation, Behaviour, Mood and ADL). 2. Motor Parkinson’s symptoms measured using MDS-UPDRS part 3 (motor), part 4 (motor-complications including Off-time) and total score 3. Non-motor Parkinson’s symptoms measured using Non-Motor Symptoms Scale (NMSS, 30 items) 4. Quality of life measured using EQ-5D-5L: Quality of life (5 items and visual analogue scale) 5. GHQ12: Psychological well-being (12 items) 6. Valuation of Informal Care measured using Client Service Receipt Inventory-shortened, adapted for Parkinson’s from iMTA Valuation of Informal Care Questionnaire (iVICQ), Health/social care resources, out of pocket costs, financial impact on carers, welfare payments and living arrangements 7. Self-Efficacy for Managing Chronic Disease (6- Item Scale) 8. ICECAP-O: capability (5 items) 9. Patient activation measured using Patient Activation Measure (PAM) 10. Medication, deaths measured using patient records 11. Cognition measured using MoCA at baseline only. Health economic evaluation will include incremental cost per quality-adjusted and capability-adjusted life year gained from i) health/social care perspective and ii) societal perspective and a decision-analytic model extrapolating costs/consequence beyond the trial. From carers: 11. Carer burden measured using Zarit carer burden inventory (22 items) 12. Carer quality of life measured using Carer Quality of Life questionnaire for Parkinsonism (26 items)

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Countries

United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Aug 25, 2026