Impact of Off-Time on Quality of Life in Parkinson’s Patients and Their Caregivers: Insights from Social Media
Table 1
Overview of key search terms.
General terms
“Parkinson’s disease” or “Parkinsons disease” or #Parkinsons or #Parkinsonsdisease or “Parkinson disease” or #Parkinsondisease
Parkinsonism or parkinsonian or “secondary parkinsonsim”
“Parkin disease”
LRRK2 or ‡“leucine-rich repeat kinase 2 gene” or dardarin OR PARK8
“Unified Parkinson’s disease rating Scale”
PDQ39 or “Parkinsons disease questionnaire”
6OHDA or “Parkinson’s model”
Treatments
Nourianz or nouriast or nouryant or Istradefylline
Kynmobi or “apomorphine hydrochloride”
Carbidopa or Lodosyn
Nuplazid or Primavanserin
AtremoPlus
Levodopa or “L Dopa” or ‡“l-dopa” or IPX203
Co-beneldopa or Madopar or “Madopa CR” or “Caramet CR” or Lecado or “Half Sinemet CR” or Sinemet or “Sinemet Plus” or “Sinemet CR” or Duodopa
Co-careldopa or “Apodespan PR”
Duopa or “carbidopa levodopa infusion” or ‡“carbidopa-levodopa”
Inbrija or ‡“inhaled carbidopa-levodopa” or “inhaled carbidopa levodopa” or “inhaled carbidopa”
Entacapone or Comtan or Comtess or co-careldopa or stalevo or sastravi or stanek
Treatments anchored to: Parkinson’s or Parkinsons
“Dopamine agonists” or dopamine or (dopamine NEAR/2 replacement)
Apomorphine or Apokyn or ‡“Apo-go” or Dacepton or “Apo-go prefilled pen” or “Dacepton cartridge” or “Apo-go prefilled syringe” or “Dacepton vial”
Pramipexole or mirapex or mirapexin or Pipexus or Glepark or Oprymea or Zentiva
Ropinirole or Requip or Adartrel or “Ralnea XL” or “Requip XL” or “Spiroco XL” or “Ipinnia XL” or “Raponer XL” or “Ropilynz XL”
Rotigotine or Neupro or “Rotigotine transdermal patches”
Amantadine or Gocovri or “glutamate antagonist”
‡“MAO-B inhibitors”
Rasagiline or Azilect
Selegiline or Zelapar or “Eldepryl Emsam” or L-deprenyl
Safinamide or Xadago
“COMT inhibitors”
Tolcapone or Tasmar
Opicapone or Ongentys
Anticholinergic or artane
Trihexyphenidyl or Benzhexol or “Benzhexol Trihex”
Ambroxol or mucosolvan or mucobrox or mucol
GyroGlove or GyroGrear or “gyroscopic glove”
LSVT OR “Lee Silverman voice treatment”
Terazosin or hytrin
‡“MRI-HIFU” or “magnetic resonance imaging and high-intensity focused ultrasound therapy”
Benzatropin or Cogentin
Proclydine or Kenadrin
Domperidone or motilum
(Treatment or medication) and (“side effects” or limitation )
Symptoms anchored to: Parkinson’s or Parkinsons
Tremor† or shak†
Slow† or bradykinesia
Stiff† or rigid†
Depress† or anxiety
“Balance problems” or fall or “postural instability”
Anosmia
Insomnia
Memory† or dementia or “Lewy bodies” or “lewy body”
Dyskinesia or spasm or writh† or jerk† or dystonia
Hallucination†
Constipat†
“Vision problem” or “speech difficulty”
“Swallowing difficulties” or drool† or dribbl†
“Restless leg syndrome” or akathisia or akathesia
“Urinary leakage”
Sweat†
Dizzy or dizziness
Fatigue or tired† or exhausted
“Off-time” or ‡“off-time” or “off period” or ‡“off-period” or “off state” or ‡“off-state” or “off episodes” or ‡“off-episodes” or “wearing off” or “wear off” or ‡“wearing-off” or ‡“wear-off” “off phase” or ‡“off-phase” or (freez† and (gait or movement)) or freez†
“On-time” or ‡“on-time” or “controlled symptoms” or “honeymoon period” or “control of motor symptoms” or “control of non-motor symptoms” or “control of symptoms” or “controlled symptoms”
Pain or discomfort or uncomfortable
“Low blood pressure” or hypotension
Handwriting or “hand writing”
Hashtags
#Endingparkinsons
#Parkinsonsuk
#PDavengers
#WorldParkinsonsDay
#TeamParkinsons
#ParkinsonsResearch
#Parkinsonsdiseasecure
#Parkinsonsdiseaserecovery
#Parkinsonsdiseasesupport
#Parkinsonsawarenessweek
#Parkinsonsukfindacure
#Parkinsonsukchangingattitudes
#Parkinsonsukfundraiser
#Parkinsonsyoga
#Parkinsonsukcharity
#Parkinsonsexercise
#Parkinsonsawarenessmonth
#Parkinsonsfitness
#Parkinsonssucks
#Parkinsonspower
#Parkinsonswalk
#Parkinsonsdementia
#Hateparkinsonsdisease
#Parkinsonstraining
Exclusion terms
“Police department”
“Democratic party” or “partito democratico”
NYPD
English syntax has been translated by local language analysts and applied in each country. “…” quotation marks = exact phrase; # hash symbol = hashtags which identify posts on a specific topic. †Indicates multiple endings are included e.g. inhibitor, inhibitors. ‡Indicates that punctuation must be taken into account.
