Linking Wellbeing, Mobility, Pain, Menstrual Health
2022 Survey Results
513 respondents completed an on-line survey between September and December 2022, predominantly from the USA, the UK, Brasil, and France. 234 of these had also this completed at least one other survey.
Use of mobility aids:
- 14% use no mobility aids
- 19% use them some of the time.
Others use aids all or most of the time, with:
- 36% using sticks
- 12% using frames and
- 19% using wheelchairs.
Disabled?: 80% consider themselves disabled, with 20% not considering themselves disabled. Mobility is often the main factor determining if someone feels disabled.
Diagnostic journey continuing: Some people who have completed previous surveys have had a genetic test for HSP since their first survey, indicating that their diagnosis journey continues over time.
Average wellbeing: Respondents completed the Warwick-Edinburgh Mental Well-being scale (WEMWBS) to assess wellbeing, with an average score of 45.6, in the ‘average wellbeing’ range.
25% experience depression: Respondents completed the PHQ2 depression screening tool. Around a quarter score 3 or more points, indicating they screen for depression.
Walking sticks/canes were identified most often as people’s favourite mobility aids amongst a wide range. Those who have negative feelings about using mobility aids tend to have a lower wellbeing. People appear to spend the longest time using either walking sticks or wheelchairs. Mobility aid use can vary significantly in the earlier stages of HSP as people learn about their altering gait. Benefits from aids include increasing independence, reducing symptoms and enjoying doing more. Many have uncertainty about the types of mobility aid they will need to use in the future.
Around three quarters of people indicate they get pain from their HSP. Respondents completed the Short-form McGill Pain Questionnaire 2 (SF-MPQ-2). The average score for people with pain from HSP is 3, higher for those using mobility aids. The most common description of pain from HSP is ‘tiring or exhausting’, followed by ‘cramping pain’ and ‘aching pain’. Most people describe their pain intensity from HSP as ‘discomforting’, and those that describe this as ‘distressing’, ‘horrible’ or ‘excruciating’ have a lower wellbeing. Overall, most people note their pain from HSP is in their legs, feet, back and hips. Looking at changes in pain since 2017, most people completing these questions in both years have no change or a small change in pain, and there may be evidence suggesting some get accustomed to their pain.
Menstrual cycle effects
People were asked how the common HSP symptoms of spasticity, pain, fatigue and mental health varied during their menstrual cycle. Over half of people felt that their mental health was worse during their menstrual cycle, and around a third thought that their spasticity, pain and/or fatigue were worse during their menstrual cycle. Those with worse spasticity, fatigue and/or mental health tend to have a lower wellbeing than others. A few people also find that their bladder and/or bowel symptoms are more affected during their cycle. For a few with earlier onset HSP there are some reasons why people avoid using tampons.
Stay positive and keep moving: People identified one piece of advice for others with HSP. The most common answers were about staying positive and keeping moving.
Many people identified things now hard or impossible to do, including types of movement and activities with other people. There are many with HSP who find making or keeping friends hard, which leads to a lower wellbeing. Similarly, people can have lower wellbeing when they find it hard to tell their friends or work colleagues about their HSP.
Research and medical care
When thinking about research priorities for HSP many answers are around treatments/cures for aspects of HSP. It is often felt that healthcare professionals do not have enough HSP information to confidently deal with people seeking help on how their HSP can be treated or how their symptoms are likely to progress.
Funding care and adaptations
When looking at funding, there are similar numbers using mobility aids and medication, and many use both. More than half have needed adaptations and improvements around their home, and around a quarter of people need adapted cars and/or carers at their homes. The four most common methods of funding for these things are Government benefits, Savings, Insurance and Health Services.
Action can be taken to improve wellbeing, including reviewing medications, mobility aids and exercise routines to manage HSP appropriately over time. Other areas associating strongly with wellbeing include:
- Reducing depression
- Pain management
- Seeking adjustments at work or alternative jobs
- Friendships, conversations and views on the opinions of others.
SOURCE: 2022 Survey Results. http://hspjourney.blogspot.com/2023/02/2022-survey-results.html
An on-line Survey for People with Hereditary Spastic Paraplegia (HSP) linking Wellbeing with Mobility, Pain, Menstrual Health and life with HSP.
Adam Lawrence, CEng, Bristol, UK. Diagnosed with HSP in 2009.