Table 1
Contents of questionnaire booklets
| 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.