The video for aHUS awareness day 2024 was about mental health and having aHUS. Global Action has looked again at it to see what important insights it might reveal.
Participant were asked how often, if at all, they felt anxious, depressed or any other stress. They were also asked to comment on their mental health.
46 people participated either as patients or carers.
Firstly how did they rate their incidence across the mental health states i.e. by not at all, occasionally, frequently, or continuously. Their collective response is shown in the table below.
| Type/ Occurrence | Anxiety ( %) | Depression (%) | Other stressors (%) |
| Not at all | 1 (2) | 17 ( 37) | 4 (8) |
| Occasional | 15 (33) | 21 (46) | 14 (30) |
| Frequent | 13 (28) | 6 (13) | 19 ( (42) |
| Continuous | 17 (37) | 2 (4) | 9 (20) |
Most notably participants experience of anxiety and depression contrasts markedly.
Almost all participants said they experienced feelings of anxiety whereas more than a third said they had not felt depressed at all. More felt frequent and continuous anxiety ( 65%) than those who had experienced frequent and continuous depression (17%)
As far as other stressors were concerned the majority experienced something, mostly at frequent intervals (42%) and continuously (20%) .
Those stressors may be attributable to key words appearing in the freeform comments made by participants. The word cloud for aHUS mental health is made up from the key words expressed by participants.
A frequent cause was called post traumatic stress disorder (PTSD) although words like trauma or stress also appeared.
There was also a feeling of burden from treatment , physical, finance and insurance worries, as well as dread of a relapse of aHUS. Some were also burdened by uncertainty about the future.
One participant had found it all a shock, and some described a struggle to regain some sense of balance in their lives. Others mentioned being emotional or a loss of self esteem ( even if unwarranted) . There was an openness about personal fears, worries and sometimes a seasonal sadness .
The aHUS awareness day video has provided data about an aspect of living with aHUS for which limited data exists.
It could be said that this is a sign of disease management development because physical treatment needs are being increasingly met.
And now mental health impact is being acknowledged, it is time for interventions to alleviate it. This was a conclusion in a recent Dutch aHUS patient and carer study of the aftermath of having aHUS . It was written by clinicians and patients.
“The emotional toll of aHUS is pervasive, with feelings of fear, guilt,
and trauma persisting across disease phases in both patients and relatives.“
(More about that study HERE).
There is also an USA study abstract on the topic appearing at this year’s ASH conference in San Diego .
It is about USA aHUS patient reported outcomes and has this to say about mental health :
Compared to the US population norm (mean ± SD, 50 ± 10), our aHUS cohort had significantly higher scores for anxiety (59.2 ± 9.7, P< 0.001), depression (55.8 ± 9.7, P<0.001), fatigue (59.3 ± 55.8, P< 0.001) and sleep disturbance (53.6 ± 7.5, P < 0.001)”
Although there is anxiety and depression in the general population, anxiety and depression reported by aHUS patients is higher.
See the ASH conference abstract HERE.
Finally a thank you to the 46 participants in the video Narelle, Pamela, Cheryl, Darcy, Sam, Cheng, Christiene, Tara, Kamal, Rodrigo, Karin, Magnus, Elis, Sarah, Kayla, Lisa, Audrey, Isabella, Andrea, Linda, Bethany, Jackie, Paige, Brianna, Stephanie, Ashley, Taylor, Lisa, Amy, Jessica, Lauren, Mary, Melissa, Miss Katelijn, Diane, Debbie, Dave, Lynetta, Amy, Kristy, Abigail, Nicholas, Reagan, Leah, Eliza, Jordyn , Elio, Jeff for their help in providing these further insights and awareness about mental health and aHUS.
Article No. 698
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