6. Similar surveys

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


since the 1980s re caregiver burden – the Zarit Burden Interview


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


for Parkinson’s Disease- an ongoing patient study with optional genetic analysis component. It has had 49,753 participants so far



For rheumatology


for cancer and chronic disease in Ontario


for perceptions during infectious disease outbreaks


for tear film dysfunction


For chronic pain -a  16 country study in 2006


 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


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


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


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


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 


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.



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.


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)


b. Surveys about a treatment for dystonia

 2012- Satisfaction with botulinum toxin treatment

a study of 36 patients in 4 countries


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.


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


            TWSTRS – Toronto Western Spasmodic Torticollis Rating Scale

            UDRS -Unified Dystonia Rating Scale