The idea of surveying patients is recent.
Because of the higher education and literacy rate of patients and easy access to technology, the medical profession is more often now asking patients, especially those with rare and incurable medical conditions, to tell more about their lived experience.
This input has huge potential to assist in the understanding of a condition and can enable researchers to see patterns that alone even patients cannot see. The ‘lived experience’ natural history type style is becoming an accepted added resource for medical study.
With appropriate protections for privacy and asking only voluntary cooperation as the patient wishes, doctors, research foundations and even patients are now embarking on the online questionnaire option.
Asking the patient for questionnaire input has been a useful tool used by researchers for decades. The questions 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 and with computers, trends can be collected in aggregate.
Here is a summary of surveys I have of previous surveys for diseases other than dystonia, surveys specifically about dystonia, and notes about our surveys can advance medical study.
EARLIER SURVEYS OF DISEASE
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
MORE RECENT SURVEYS OF DISEASE
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
https://www.ontariohealthstudy.ca/
for perceptions during infectious disease outbreaks
https://www.medrxiv.org/content/10.1101/2020.03.13.20035568v2
For chronic pain -a 16 country study in 2006
https://pubmed.ncbi.nlm.nih.gov/16095934/
For caregivers of those with severe mental illness: a 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.
http://eufami.org/wp-content/uploads/2018/04/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
SURVEYS SPECIFICALLY 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/
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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
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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-
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2014: a study in Japan of the effect of dystonia on employment
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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/
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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
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b. surveys about a specific type of treatment, sometimes sponsored by a drug company
2012: Satisfaction with botulinum toxin treatment – a study of 36 patients in 4 countries
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544552/
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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.
https://dystoniacanada.org/survey
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2019 (date unclear): 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
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HOW THIS CURRENT SURVEY CAN ADVANCE THESE STUDIES
2020: a patient-driven survey with 28 separate optional questionnaires in the first six months and 14 additional surveys in the second, totalling several thousand optional questions.
The online surveys, anonymous and volunteer, ask about symptoms, progression of symptoms, effect on daily life, mood, pain, interactions with the medical community, types of treatments and their effects and side effects, moods and coping mechanisms, sensory tricks, theories about possible causes .
The survey series by the half way point has been seen in 74 countries and over 1276 surveys have been completed,. The series runs May 2020 to May 2021.
Lived Experience With Dystonia 