New research reinforces the need for better support for life after stroke

 Because your doctors, therapists' and hospital are COMPLETE FUCKING FAILURES AT GETTING YOU 100% RECOVERED this useless research is needed! Anyone with any working neurons at all will tell you stroke rehab is a complete shitshow of failure!

New research reinforces the need for better support for life after stroke

                   A large-scale study from UCLH and UCL Queen Square Institute of Neurology highlights the real-world impact of life after stroke, revealing the significant burden faced by survivors.

The study captures the wide-ranging impacts of non-motor complications in areas such as mental health, sleep, fatigue, pain, social participation, and bowel and bladder function following stroke.

The research team said it is vital that stroke services focus on these aspects of recovery alongside the traditional focus of care which has been how quickly patients regain movement and physical independence.

The comprehensive meta-analysis, published in JAMA Network Open, analysed data from 117,440 stroke survivors over a 24-year period. The study revealed that 1 in 2 stroke survivors experience multiple adverse non-motor outcomes, with many complications continuing for a decade or more.

The review, led by Dr Hatice Ozkan, with senior authors Dr Robert Simister and Prof David Werring, reinforces findings from a smaller scale 2024 study from the team.

The team is calling for an urgent expansion of rehabilitation services to include non-motor complications. The team said stroke pathways must also integrate long-term follow-up for survivors, ensuring that post-stroke complications are identified and managed early.

Prof Werring said: “Non-motor complications such as fatigue, sleep disturbance and depression are just as debilitating as physical disabilities, yet they remain under-recognized and under-treated.”

Dr Simister said: “We have available treatments, but without clear pathways to integrate them into routine care, too many patients continue to struggle.”

Lead author Dr. Ozkan said:  "Our comprehensive study shows the real-world impact of stroke and the urgent need for life-after-stroke care pathways addressing non-motor outcomes, which profoundly affect every aspect of a person’s life. Without patient-centred life after stroke pathways that include early recognition, standardised screening, and management, stroke survivors will continue to face slower recovery, greater dependency, and reduced quality of life. Therefore, current practices must improve to rebuild lives after stroke."

Links

• Ozkan H, Ambler G, Esmail T, Banerjee G, Simister RJ, Werring DJ. Prevalence, Trajectory, and Factors Associated With Patient-Reported Nonmotor Outcomes After Stroke: A Systematic Review and Meta-Analysis. JAMA Netw Open. 2025;8(2):e2457447. doi:10.1001/jamanetworkopen.2024.57447  
• Ozkan et al ‘Prevalence, predictors, and patterns of patient reported non-motor outcomes six months after stroke: a prospective cohort study’ The Lancet Regional Health - Europe, Volume 47, 2024, 101080, https://doi.org/10.1016/j.lanepe.2024.101080
• Professor David Werring's academic profile
• Dr Robert Simister's UCLH profile

Source: NIHR UCLH BRC

Stroke survivors’ priorities for research related to life after stroke

Why did you even have to ask? The whole point is to return to normal life, 100% recovery.  Your fucking tyranny of low expectations is showing.

 Stroke survivors’ priorities for research related to life after stroke

Topics in Stroke Rehabilitation , Volume 28(2) , Pgs. 153-158.

NARIC Accession Number: J86308.  What's this?
ISSN: 1074-9357.
Author(s): Rudberg, Ann-Sofie ; Berge, Eivind ; Laska, Ann-Charlotte ; Jutterström, Stina ; Näsman, Per ; Sunnerhagen, Katharina S.; Lundström, Erik.
Publication Year: 2021.
Number of Pages: 6.

Abstract: 

Study determined which area of research related to life after stroke that Swedish stroke patients and their informal caregivers prioritized as being relevant and valuable, explored whether priorities differed between subgroups of patients. This was a cross-sectional study of all patients who had completed the 12-month follow-up questionnaire in an ongoing Swedish randomized clinical trial of fluoxetine versus placebo once daily for six months after ischemic stroke or intracerebral hemorrhage. In the questionnaire, the stroke patients and their informal caregivers were asked to prioritize areas of research they considered important and valuable with respect to their life after stroke. Of the 731 patients who were still alive at the 12-month follow-up, 589 responded. The most prioritized areas of research were “balance and walking difficulties” (49 percent) and “post-stroke fatigue” (29 percent). Women answered the undefined alternative “other” more often than men (11 percent versus 6 percent). Younger patients prioritized “post-stroke fatigue” to a higher extent, and elderly patients prioritized “balance and walking difficulties” and “speech difficulties”. The results suggest that life after stroke is perceived differently with aging. Future research should address strategies to face challenges such as imbalance and walking difficulties and post-stroke-fatigue.
Descriptor Terms: CAREGIVERS, CHRONIC FATIGUE SYNDROME, CLIENTS, GOAL SETTING, MOBILITY IMPAIRMENTS, RESEARCH, STROKE.


Can this document be ordered through NARIC's document delivery service*?: Y.

Citation: Rudberg, Ann-Sofie , Berge, Eivind , Laska, Ann-Charlotte , Jutterström, Stina , Näsman, Per , Sunnerhagen, Katharina S., Lundström, Erik. (2021). Stroke survivors’ priorities for research related to life after stroke.  Topics in Stroke Rehabilitation , 28(2), Pgs. 153-158. Retrieved 6/22/2021, from REHABDATA database.

 

Improving Life After Stroke Award - Stroke Association, Australia

 The best way to improve life after stroke would be for stroke doctors and hospitals to get off their asses and get researchers to solve the 5 causes of the neuronal cascade of death in the first week saving billions of neurons. I only lost 5.4 billion neurons that first week because my doctor knew nothing and did nothing. That's 3% of my neurons, saving those would have made my 100% recovery a cinch.

Improving Life After Stroke Award - Stroke Association, Australia

Life after stroke webinar series 2021: Shining a spotlight on life after stroke

Another proof that the tyranny of low expectations infects all of stroke. If you got survivors 100% recovered you wouldn't have to do this kind of stuff at all. Please work yourself out of a job like the Michael J. Fox Foundation is trying to do.  Since your hospitals have to do this it means they are a complete failure in getting survivors recovered.

Or is this the problem?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Life after stroke webinar series 2021: Shining a spotlight on life after stroke

Register now for the webinar series https://bit.ly/3cXlJFR

There are nine million people living with stroke in Europe.

The pandemic has worsened the stroke burden and the number of stroke survivors is predicted to increase due to an ageing population. Life after stroke care and support is even more important than ever and must be a priority for health and social care across Europe.

The life after stroke series of free interactive events is an opportunity to build the life after stroke healthcare, research and patient community, stimulate debate and ultimately improve life after stroke care and build interest for our 1^st European Life After Stroke Forum on 11 March 2022.

 

Life after stroke: priorities, challenges and ways forward?

In our opening session on Friday 12 March 09.00-10.30 GMT, our aim is to highlight key issues affecting stroke survivors in the longer-term after stroke and share examples of good practice and what ‘good’ long-term support looks like in a post-pandemic context.

We will hear updates from Bo Norrving (Sweden)(former president of the WSO, I could see nothing that he accomplished for survivors.), Juliet Bouverie (UK), Liam Healy (Ireland) and Caterina Pistarini (Italy) on people’s experiences of the impact of stroke before and during the pandemic, and how healthcare and support services have adapted to meet the challenges of post-pandemic stroke care.

We will learn about new and creative ways of offering support such as using telemedicine and telerehabilitation and remote methods of looking after stroke survivors.

This interactive session is for anyone with an interest in stroke support and care including clinicians, stroke survivors and carers as well as stroke support organisations across the globe.

Participation and registration is free.

Register now for the webinar series https://bit.ly/3cXlJFR

#LifeAfterStroke

We hope to see you then!

SAFE team

 

Someday This Will Be Funny

I'm a firm believer in problems/failure as a great way to have stories to tell for the rest of your life. 

An insignificant blip in the arc of life.
Like this William Nealy cartoon. This one is copied from  The Nealy Way of Knowledge.;

A great story from Tiny Buddha here:

Someday This Will Be Funny

An important line from here:
This is your life. If you spend it going from sour mood to sour mood, your life is going to turn out pretty sour. You are the only one who has the power to change that.