Table 2.
Interim prioritisation of the top 26 uncertainties
Uncertainty | PwP Score | Carer Score | F&F Score | HSCP Score | Total | Interim rank | A–Z ID |
---|---|---|---|---|---|---|---|
What treatments are helpful in reducing tremor in people with Parkinson's? | 93 | 83 | 92 | 91 | 359 | 1 | T |
What treatments are helpful for reducing balance problems and falls in people with Parkinson's? | 92 | 93 | 80 | 94 | 359 | 1 | E |
Is it possible to identify different types of Parkinson's, eg, tremor dominant? And can we tailor treatments best according to these different types? | 88 | 88 | 89 | 88 | 353 | 3 | U |
What treatments would ensure the medications were equally effective each day (prevented/managed wearing off, variability, on/off states) in people with Parkinson's? | 89 | 94 | 88 | 81 | 352 | 4 | H |
Would the monitoring of dopamine levels in the body (eg, with blood tests) be helpful in determining medication timing and amount (dose)? | 91 | 89 | 86 | 86 | 352 | 4 | L |
What is helpful for improving the quality of sleep in people with Parkinson's? | 94 | 79.5 | 93 | 84 | 350.5 | 6 | G |
What best treats mild cognitive problems such as memory loss, lack of concentration, indecision and slowed thinking in people with Parkinson's? | 87 | 91 | 77 | 89.5 | 344.5 | 7 | D |
What treatments are helpful in reducing urinary problems (urgency, irritable bladder, incontinence) in people with Parkinson's? | 90 | 77 | 94 | 79 | 340 | 8 | I |
What drug treatments are best for the different stages of Parkinson's? | 83 | 87 | 87 | 77.5 | 334.5 | 9 | X |
What approaches are helpful for reducing stress and anxiety in people with Parkinson's? | 75 | 77 | 82 | 92 | 326 | 10 | M |
What treatments are helpful for reducing dyskinesias (involuntary movements, which are a side effect of some medications) in people with Parkinson's? | 80 | 90 | 73.5 | 77.5 | 321 | 11 | J |
What best treats dementia in people with Parkinson's? | 56 | 92 | 75 | 93 | 316 | 12 | Z |
What interventions are effective for reducing or managing unexplained fatigue in people with Parkinson's? | 78 | 65 | 85 | 85 | 313 | 13 | Y |
What best helps prevent or reduce freezing (of gait and in general) in people with Parkinson's? | 79 | 71.5 | 76 | 82 | 308.5 | 14 | O |
What treatments are helpful for swallowing problems (dysphagia) in people with Parkinson's? | 66 | 74.5 | 81 | 80 | 301.5 | 15 | C |
What is the best method of monitoring a person with Parkinson's response to treatments? | 81 | 52.5 | 83.5 | 83 | 300 | 16 | F |
What training, techniques or aids are needed for hospital staff, to make sure patients with Parkinson’s get their medications correctly and on time? | 53 | 86 | 64.5 | 89.5 | 293 | 17 | W |
What treatments are helpful in reducing bowel problems (constipation, incontinence) in people with Parkinson's? | 77 | 85 | 90 | 40 | 292 | 18 | K |
What is the best type and dose of exercise (physiotherapy) for improving muscle strength, flexibility, fitness, balance and function in people with Parkinson's? | 84 | 68 | 64.5 | 67.5 | 284 | 19 | Q |
Can medications be developed to allow fewer doses per day for people with Parkinson's? (For example combinations of medications in one pill, slow release pills) | 73 | 84 | 56 | 69 | 282 | 20 | S |
What helps improve the dexterity (fine motor skills or coordination of small muscle movements) of people with Parkinson's so they can do up buttons, use computers, phones, remote controls etc? | 85 | 59.5 | 73.5 | 54.5 | 272.5 | 21 | A |
What treatments are effective in reducing hallucinations (including vivid dreams) in people with Parkinson's? | 52 | 79.5 | 71.5 | 61 | 264 | 22 | P |
What is the best treatment for stiffness (rigidity) in people with Parkinson's? | 86 | 67 | 63 | 46 | 262 | 23 | B |
At which stage of Parkinson's is deep brain stimulation (a surgical treatment that involves implanting a ‘brain pacemaker’ that sends signals to specific parts of the brain) most helpful? | 69 | 59.5 | 91 | 42 | 261.5 | 24 | N |
What training to improve knowledge and skills do informal carers (family and friends) need in order to best care for people with Parkinson's? | 42 | 82 | 70 | 63.5 | 257.5 | 25 | V |
What is the best treatment for pain in people with Parkinson's? | 82 | 54 | 60.5 | 57.5 | 254 | 26 | R |
F&F, family and friends; HSCP, health and social care professionals; PwP, people with Parkinson's.