| Parkinson's Disease Questionnaire(PDQ)-8 |
8 Items. Each item is rated: 0 (never) to 4(always/cannot do) in the past one month. Items are: problems getting around in public, difficulty dressing self, felt depressed, embarrassed in public due to having disease, problems with close personal relationships, problems with concentration, unable to communicate with people properly, painful muscle cramps or spasms. PDQ-8 Summary Index is expressed as percentage of the sum of the items scores on the maximum possible scale score [33]. |
Extensively validated in IPD and related disorders, including translated versions and in different cultures, provides a reliable measure of overall health status recommended for studies in which a short questionnaire is preferred [34]–[36]. It maps and shows a similar responsiveness to change as the EQ5-D [33], [37], [38]. |
| Hospital Anxiety and Depression Scale(HADS)-14 |
14 items: 7 concerned with anxiety and 7 with depression. Each item is rated on a 0–3 (worst) scale. Total possible score is 42 (worst psychological distress). |
HADS has been used widely in Parkinson syndromes and many diseases. There are two subscales – depression and anxiety but Rasch analysis in patients with Parkinson's Disease supports the use of total score to assess psychological distress [39], [40]. |
| EQ5-D |
5+2 items. EQ5-D has three components: 1) a descriptive part, consisting of 5 items, that can then be converted into a value (EQ-Index), each ranging from 1 (perfect health state) to 0 (death); 2) a question about change in health status in the preceding 12 months; and 3) a visual analogue scale (EQ-VAS) for assessment of current health state, from 0, the worse imaginable health state, to 100, best imaginable health state. |
ED5-D is a generic widely used HRQoL measure. It has been used widely in IPD [37], [38], [41]–[43]. EQ5-D was calculated using the UK weighting schemes recommended by Dolan P et al [44]. |
| Palliative care Outcome Scale (POS) |
10 items. Each item is rated according to how much it has affected the person, from 0 (best) to 4 (overwhelming problem) over the past 2 weeks. Items are: pain control, symptom control, patient anxiety, family anxiety, information, sharing feelings, depression, self-worth, practical needs and time wasted. Total possible score 40. |
POS is one of the top two outcome measures used in palliative care studies, has psychometric and clinimetric validity, reliability and responsiveness to change, in late stage and earlier but symptomatic disease across many conditions and settings, including neurological conditions (multiple sclerosis, motor neurone disease), cancer, organ (respiratory, renal and heart) failure, elderly patients with co-morbid disease, in home, hospital, nursing home, hospice settings. Research has shown it can be used as an overall scale, as individual items or 3 factors; physical, quality of care and psychological [23], [45]–[48]. |
| Palliative care Outcome Scale for Symptoms (POS-PP) |
20 items (motor and non-motor symptoms). Each item is rated according to how much it has affected the person, from 0 (best) to 4 (overwhelming problem) over the past 2 weeks. Total possible score of 80. |
A validated extension of the core POS assessing symptoms (POS-S), with additional Parkinsonism Plus symptoms added. POS-S measure has been used in many conditions, including neurological diseases [24], [45], and POS-PP is essentially POS-S with some specific Parkinson's related symptoms added. There are no generic palliative care measures that have been used and validated in IPD, MSA or PSP; therefore POS and POS-PP because of their proven validity in late stage disease and simplicity of use were the best fit. |
