Table 3 Refinement of PROs
PRO scale or item (version 0.3 as presented at the CD interviews) | Action and reason for decision* | Revised items (if applicable) as included in final version 1.0 |
|---|---|---|
Early Parkinson’s Function Slowness PRO* | Consensus decision to add 3 items based on PE insights and PI evidence | Picking a coin up off a table Retrieving coins from a wallet or purse Tying shoelaces |
Doing up buttons | Keep and explore further at next stage of validation since PE endorsed the relevance of the item | No changes made |
Doing up a zip | Item reworded for USA English appropriateness based on PE insights | Doing up a zipper |
Using a knife | ||
Consensus decision to merge the two items due to conceptual overlap | Using a knife and fork | |
Using a fork | ||
Counting money | Consensus decision to reword item to reduce ambiguity; based on PE insights that also addressed UK and US cultural/language difference | Counting paper money |
Carrying or moving things | Item split into two to reflect two unique concepts and reworded to focus on heavy objects; based on PE insights and consensus | Carrying heavy objects Moving heavy objects |
Lifting or carrying things | Decision to remove based on PE insights as ‘lifting’ had no additional conceptual relevance to carrying | Item removed |
Climbing up or down the stairs | Consensus decision to reword to more appropriate terminology | Walking up or down the stairs |
Walking on uneven ground | ||
Decision to keep and explore further at next stage of validation since PE endorsed the unique conceptual relevance and distinct value of both items | No changes made | |
Walking on a busy street or crowded area | ||
Doing your hobbies or other leisure activities | ||
Consensus decision to retain wording and explore at next stage of validation. These items relate to important and relevant concepts, but further specification may limit generalizability at this stage | No changes made | |
Performing your work or tasks within your daily routine | ||
Multitasking | Item reworded to reduce ambiguity on the basis of PE insights | Doing more than one task at the same time |
Thinking or processing things | Consensus decision to retain wording and explore at next stage of validation | No changes made |
Reacting to things in real time to avoid potential accidents | Based on PE insights, this item was split to reduce ambiguity and differentiate between the situation of inside and outside the home | Reacting in real time to avoid potential hazards inside the home Reacting in real time to avoid potential hazards outside the home |
Early Parkinson’s Mobility* | Consensus decision to add 4 items based on PE insights and PI evidence | Difficulty turning on the spot Difficulty getting out of a car Difficulty changing direction whilst walking Difficulty walking in low lighting |
Difficulty getting out of a chair | Consensus decision to reword these items to reduce ambiguity and more accurately reflect the experience of living with early-stage Parkinson’s; based on PE insights that also addressed UK and US cultural/language differences | Difficulty standing up from sitting |
Difficulty walking outdoors | Difficulty walking on uneven ground | |
Difficulty walking in unfamiliar places | Difficulty walking on unfamiliar ground | |
Difficulty bending | Difficulty bending to pick up something from the floor | |
Needing to put more effort on your walking | Consensus to include ‘into your walking’ rather than ‘on your walking’ to make the item more grammatically correct | Needing to put more physical effort into your walking |
Difficulty rolling over in bed | Consensus decision to keep and explore further at next stage of validation since the concepts were deemed relevant by PI and PE | No changes made |
Needing to concentrate on your walking | ||
Clumsiness when walking | ||
Shuffling when walking | ||
Problems with your balance when moving | Consensus to remove item due to conceptual overlap with the ‘balance when walking’ item | Item removed |
Problems with your balance when walking | Consensus to keep since overlapping item ‘problems with your balance when moving’ was removed | No changes made |
Difficulty standing for long periods | Consensus decision to remove items on the basis of a problematic measurement framework around the variable interpretation of ‘long time’ between responders | Items removed |
Difficulty sitting for long periods | ||
Difficulty walking for a long time | ||
Problems with your arm swing when walking | Consensus decision to remove as item relates to functional slowness rather than difficulty with mobility | Item removed |
Sudden freezing when walking | ||
Consensus decision to remove as both items do not sufficiently relate to the cardinal aspects of mobility issues in early-stage Parkinson’s | Items removed | |
Falling |