2016: Fatigue, Bladder and Bowel Issues, HSP information sources:
- Neurological Fatigue Index (NFI-MS, a 9 question survey)
- Modified Fatigue Impact Scale (MFIS-5, a 5 question survey)
- Brief Fatigue Inventory (BFI, a 9 question survey)
Blog post: http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html
Full analysis: https://drive.google.com/open?id=0BzEoTkR5HCWhSEQ1UElwamVod3c
2016: Poster for International HSP meetinghttps://drive.google.com/file/d/0BzEoTkR5HCWhNzllZWZWR05qWk0/view
Note, some browsers do not appear to like this file. You should be able to download the file and view in acrobat reader v8 or v9.
A more compatible, but bigger file size version is here: https://drive.google.com/file/d/0BzEoTkR5HCWhTklWZFNDWGlSYlU/view
2015: Modifications at Home, Depression and Quality of Life
People with HSP appear to suffer from depression more than the general population. Respondents completed the PHQ-2 depression screening questionnaire, which showed that around a quarter should seek further assessment. Results have been compared with the 2009 Estonian study into depression with HSP, and a similar proportion of people with scores of zero, indicating no depression, is shown.
2014: Medication, Diet, Exercise and Relaxation
2013: Mobility, Symptoms, Resources and Mis-diagnoses
- Those who can walk unaided tend to have 4-5 minor symptoms, up to three moderate symptoms and no major symptoms. All respondents in this group had at least three symptoms, at least two of which were minor.
- Those who use mobility aids some of the time tend to have 4-5 minor symptoms, up to three moderate symptoms and up to one major symptom. All of the respondents in this group had at least five symptoms, at least one of which was minor.
- Those who use mobility aids all or most of the time tend to have 2-5 minor symptoms, up to 5 moderate symptoms and up to 5 major symptoms. All of the respondents in this group had at least 7 symptoms.
One fifth of respondents indicated that they had been correctly diagnosed with HSP the first time. The most frequent misdiagnoses were; Multiple Sclerosis, Cerebral Palsy, Arthritis and Charcot-Marie-Tooth disease.
Note from June 2016 - when preparing the poster I had a look at the data for the number of symptoms for the different levels of mobility, and there are slightly different numbers shown on the poster.