Data on wellbeing, relationships, acceptance and more
Results from an on-line Survey for People with Hereditary Spastic Paraplegia (HSP) linking Wellbeing with Relationships, Acceptance, Life with HSP and Bladder issues.
Here are the results of Adam Lawrence’s ninth survey, launched in October 2021.
There were 565 respondents who completed the survey, predominantly from the USA, Germany, Brasil, and the UK. Results show information on HSP diagnosis, gene type, wellbeing, mobility analysis and much more about life with HSP.
Around 64% have had a genetic test. The proportion having a genetic test is lowest in Brasil (48%), and highest in Germany (82%) and Austria (80%). 321 respondents (57%) know which type of HSP they have.
Overall, well-being scores are average, not being significantly different from most previous years surveyed and not significantly different from the general population.
20% say they have been excluded from social events because of their HSP.
63% always feel comfortable discussing HSP with their partner/family, with 29% feeling comfortable sometimes.
In a romantic relationship, 50% say they would be uncomfortable but would discuss their HSP, with 43% saying they would be comfortable discussing it. Around 20% indicate that their HSP has negatively impacted a long-term relationship either in the past or currently, with 31% thinking that there will be negative impacts on long-term relationships in the future.
There is low to moderate acceptance of having HSP on average across the more than 500 who responded. The survey established a strong link between acceptance and wellbeing, with those scoring low on acceptance having significantly lower wellbeing than those who scored high.
The two main causes of stigma were seen as lack of understanding of HSP and the symptoms of HSP.
The proportion of people who identify as disabled increases with reduced mobility although it is not the only factor in how people see themselves.
Almost 3/4 of respondents reported mild or moderate bladder effects.
87% would like to participate in HSP research projects.
There is a wealth of information in these results, backed by in-depth analysis and thoughtful conclusions – well worth reading at length.
Get an abbreviated version of the results: http://hspjourney.blogspot.com/2022/02/2021-survey-results.html
Get the full results
SOURCE: A journey to HSP/FSP, Feb 2022
2021 Survey Results
Adam Lawrence