6. Similar Surveys
Asking the patient for questionnaire input has been a useful tool for researchers for decades. The question can be asked in person in clinic or over the phone. However with online technology they can be collected with much lower staffing cost or imposition on researcher time because trends can be collected in aggregate.
A. Surveys about other medical conditions
since the 1950s -general national health survey- in the UK
https://www.cdc.gov/nchs/nhis/index.htm
since the 1980s re caregiver burden – the Zarit Burden Interview
https://academic.oup.com/gerontologist/article/41/5/652/596578
1996 Experience of Caregiving Inventory ECI
developed by Szmukoler was a self reported measure with 66 items
for those caring for a relative with serious mental illness
https://link.springer.com/article/10.1007/BF00785760
for Parkinson’s Disease- an ongoing patient study with optional genetic analysis component. It has had 49,753 participants so far
https://foxinsight.michaeljfox.org/
https://www.michaeljfox.org/fox-insight
For rheumatology
https://pubmed.ncbi.nlm.nih.gov/28298194/
for cancer and chronic disease in Ontario
Home
for perceptions during infectious disease outbreaks
https://www.medrxiv.org/content/10.1101/2020.03.13.20035568v2
for tear film dysfunction
https://www.tandfonline.com/doi/abs/10.1080/09286580802521317
For chronic pain -a 16 country study in 2006
https://pubmed.ncbi.nlm.nih.gov/16095934/
For caregivers of those with severe mental illness
2015 study in 22 countries, reaching 1111 family caregivers, done in 12 languages and asking over 60 questions about experiences, burden, stigma, supports, satisfaction and needs.
Click to access c4c-global-report-final-updated-11-aug-15.pdf
for users of mental health services – a 2011 study of stigma and shame among patients
https://pubmed.ncbi.nlm.nih.gov/21784287/
for covid 19 – an online current study recruiting 50,000 people who tested positive to the virus to collect anonymized data about their experience of the condition and recovery
https://www.cambridgebrainsciences.com/studies/covid-brain-study
B. Surveys about dystonia
Patient surveys for dystonia are more recent. They tend to be of two types.
a. Surveys about living with dystonia
2002 – study of quality of life and depression for those with cervical dystonia and dystonia affecting the eyes – 220 patients from 8 clinics in Austria
https://pubmed.ncbi.nlm.nih.gov/12140667/
2005-Beth Israel Dystonia Screen (BIDS)
a computer assisted telephone interview to screen for cervical and cranial dystonia
based on data from 193 individuals in 16 families
https://n.neurology.org/content/64/12/2046
2010 – Natural history and biospecimen repository – an ongoing study
The Dystonia Coalition recruits about 400 patients per year for a longitudinal study of several types of dystonia. It requires clinic visits and lab tests and issues a questionnaire about psychological effects and impact on daily life
https://www.rarediseasesnetwork.org/cms/dystonia/Get-Involved/Research-Studies/6301-
2014 – a study in Japan of the effect of dystonia on employment
2015 -International Survey of Patients with cervical dystonia
1071 patients in 38 countries were asked questions in an online survey in 2012, about whether there was pain, impact on daily life, sleep, goals of treatment, types of and effect of treatment. It asked 42 questions and time to complete it was estimated at about 15 minutes.
https://pubmed.ncbi.nlm.nih.gov/25605434/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544552/
2017- a study of possible dystonia among musicians in Japan.
Of 1300 people asked at 41 conservatories, 66 responded. The survey had 28 questions asking about experience with the condition, coping mechanisms and treatments.
https://www.arcjournals.org/journal-of-neuroscience/volume-2-issue-2/5
2021 – A survey of 542 patients with dystonia consisted of a 97 question anonymous online questionnaire, examining risk of suicidal behavior. Alexis Worthley and Kristina Simonyan published this survey.
Suicidal Ideations and Attempts in Patients With Isolated Dystonia (nih.gov)
https://www.ncbi.nlm.nih/gov/pmc/articles/PMC8032380
b. Surveys about a treatment for dystonia
2012- Satisfaction with botulinum toxin treatment
a study of 36 patients in 4 countries
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544552/
2017 – a study of effectiveness of botulinum toxin –
a Canadian study by the Dystonia Medical Research Foundation (Canada)
613 people responded, from all across Canada. The survey was supported by Merz Pharma Canada. The survey asked age, gender, type of dystonia, use of botulinum toxin, and had a few questions about sleep, mood, paid work, and pain.
2019ap cervical dystonia
Leger was conducting a survey of cervical dystonia and those with upper limb spasticity. The survey was recruiting participants online and addressed specifically the use of botulinum toxin. The survey took 20 minutes to fill out and people who participated received payment.
https://dystoniacanada.org/cervical-dystonia-patient-research-questionnaire
C. There have also been some rating scales for patient experience that could be adapted into an online survey
Other quality of life surveys were consulted and where questions
seemed relevant to dystonia, adaptations of some of those questions
were adapted for this set.
BDJ – survey of stress among British Dentists
BRFSS – Behavior Risk Factor Surveillance System
GDS – Global Dystonia Rating Scale
Health related quality of life HRQUOL
Mankoski pain scale
McGill pain questionnaire
NHANES – National Health and Nutrition Examination Survey
Numerical rating scale for pain
PROMIS- Patient Reported Outcomes Measurement Information System
SF-36
TWSTRS – Toronto Western Spasmodic Torticollis Rating Scale
UDRS -Unified Dystonia Rating Scale
Lived Experience With Dystonia 