Metric | Data | Items | PPT + | PPT - | CG |
Demographics | Gender | 1 | |||
Date of birth | 1 | ||||
Ethnicity | 1 | ||||
Employment status | 1 | ||||
Highest qualification | 1 | ||||
Marital status | 1 | ||||
Living situation | 1 | ||||
Medication | Medication (name, dose, frequency, route) | 1 | |||
Parkinson’s history | Diagnosis | 1 | |||
Year of diagnosis | 1 | ||||
Laterality of first symptoms | 1 | ||||
Advanced therapies | 3 | ||||
General medical history | Past medical history | 1 | |||
Healthcare contacts | 2 | ||||
Falls and near falls | 2 | ||||
Height, weight, weight 3–6 months ago | 3 | ||||
Health status question | 1 | ||||
About the care | Relationship to recipient | 1 | |||
Living with recipient | 1 | ||||
Intensity of caring and tasks of caring | 2 | ||||
Duration of caring | 1 | ||||
Information about care recipient (if the patient is not participating) | Gender | 1 | |||
Age | 1 | ||||
Living situation | 1 | ||||
Diagnosis | 1 | ||||
Year of diagnosis | 1 | ||||
Nutritional risk | Seniors in the community: Risk Evaluation for Eating and Nutrition II−14 item version56–58 | 17 | |||
Frailty | Survey of Health, Ageing and Retirement in Europe 75+52 | 5 | |||
Sarcopenia screen | SARC-F questionnaire54 | 5 | |||
Covid-19 questions | Symptoms, self-isolation/shielding, access to care | 13 | |||
Lifestyle | Smoking | 1 | |||
Alcohol intake | 2 | ||||
Physical activity | 3 | ||||
Capability/well-being | ICEpop CAPability measure for Older People59 | 5 | (proxy version) | ||
Quality of life | Parkinson’s Disease Questionnaire-39 (PDQ-39)60 | 39 | |||
Non-motor symptom burden | Non-Motor Symptom Questionnaire (NMSQ)61 | 30 | |||
Autonomic symptoms | Scales for Outcomes in Parkinson’s disease- autonomic dysfunction62 | 25 | |||
Depression | Beck depression inventory-II63 | 21 | |||
Bowel function | Neurogenic bowel dysfunction score30 | 11 | |||
Urinary tract symptoms | International Consultation on Incontinence Questionnaire: ICIQ-mLUTS (for men) and ICIQ-fLUTS (for women)29 | 12 (female) 13 (male) | |||
Cognition | Test Your Memory32 | 16 | |||
Motor symptom burden | Motor rating scale- adapted from Parveen33 | 4 | |||
Freezing of gait | New Freezing of Gait36 | 9 | |||
Patient activation | Patient Activation Measure64 | 13 | |||
Symptoms and behaviour | Neuropsychiatric Inventory65 | 12 | |||
Activities of daily living | Bristol Activities of Daily Living Scale38 | 20 | |||
Quality of life | Parkinson's Disease Questionnaire (PDQ) carer44 | 29 | |||
Caregiver burden | Zarit Burden Interview66 | 22 | |||
Caregiver activation | Caregiver Patient Activation Measure (CG-PAM) | 13 | |||
Caregiver coping strategies | Brief Coping Orientation to Problems Experienced (BriefCOPE) 67 | 28 | |||
Perceived social support | Multidimensional scale of perceived social support46 | 12 | |||
CG, Caregiver participant; fLUTS, female short form Lower Urinary Tract Symptoms; mLUTS, male short form Lower Urinary Tract Symptoms; PPT-, Participant with parkinsonism without capacity to consent to research (questionnaires completed by a representative); PPT+, Participant with parkinsonism with capacity to consent to research.