Author: Professor Liz Lightbody

After a stroke, people may have a wide range of physical, psychological and social needs or concerns, which are often not addressed very well. The road to recovery has many highs and lows, and stroke survivors often have to adapt to lasting changes. The focus of this session convened by Professor Liz Lightbody and Professor Frank Becker was around how we can facilitate and support recovery and help stroke survivors to navigate life after a stroke. It highlighted some important messages with regard to recovery from cognitive impairments and dose and intensity in relation to recovery of aphasia, as well as the value of good discharge planning that addresses the individual’s needs.

Professor Dominique Cadilhac from Monash University and The Florey Institute, Australian, presented on Recovery-focused Community Support to Avoid readmissions and improve Participation after Stroke (ReCAPS).  The aim of the presentation on the ReCAPs study using aggregated data form 466 participants was to describe factors associated with unmet needs 7-14 days after discharge following acute stroke, and to describe prioritised goals to address unmet needs and if these are achieved by 90 days. The discharge satisfaction (PREPARED survey) and the Long-term Unmet Needs Survey (LUNS) were obtained by phone 7-14 days post discharge. At 90-days, the LUNS and goal attainment were re-assessed. Overall, the participants (median age 67 years, 33% female) reported a mean 2.6 unmet needs at baseline compared with 1.5 at 90-days; frequency at baseline differed by age, sex, length of stay, level of dependency, confidence to manage at home or feeling prepared to return home. Sixteen participants (3%) felt unprepared to return home and this group had more unmet needs: (7.1) than 77% who felt very prepared (2.2; p <0.01). Various unmet needs were reported although most improved significantly by 90-days. For example, 80% of health-related goals and 78% of everyday activities goals were partially or fully met. These results highlight the importance of preparing patients for discharge. If feasible, it might be beneficial to ‘check-in’ with patients early after discharge to discuss unmet needs.

Professor Katerina Hilari, from University of London presented the new ESO guidelines on aphasia rehabilitation, which is chaired/ co-chaired by Professors Marian Brady / Katerina Hilari. The guideline addresses 10 PICO questions on dose, intensity, frequency, as well as modes of delivery (digital vs in person; group vs one-to-one) of aphasia speech and language therapy (SLT). It also addresses tDCS brain stimulation + SLT vs sham brain stimulation + SLT, a PICO that involved six separate comparisons based on location and polarity of stimulation. In the interest of time, the presentation covered functional communication and quality of life outcomes and highlighted, among other things, the benefits of higher dose and higher intensity SLT. An ESO webinar will be organised to present the full guideline over the next few months.

The issue of post stroke cognitive impairment and dementia were outlined and new evidence of four trajectories covering improvement or decline was described by Associate Professor Nele Demeyere from the University of Oxford in her session on Recovery of Post-stroke cognitive impairments : domain-specific trajectories. Whilst most research on post-stroke cognition has tended to focus on prediction of decline or end-point cognitive impairment categories, this study aimed to better understand domain-specific cognitive changes over the long-term (attention, language, praxis, executive functioning).  The OX-CHRONIC study followed up 105 stroke survivors (average age 73, average acute NIHSS 7.4) who had completed acute and 6-month cognitive profiling with the Oxford Cognitive Screen at a time they were at least 2 years post stroke (range 2-9, average 4.5 years).

Overall there was a high prevalence of impairments both in terms of overall cognition (46% on OCS, 65% on a MoCA cut off of 26, 31% if using a MoCA cut off of 22) as well as in terms of different specific cognitive domains.  Importantly though, when modelling individual change over time, 47% demonstrated improvement over time (after 6 months), with 48% showing no change and mild impairments and only 5% of the sample showed a decline.

This study demonstrates that alongside risks of decline, there can be ongoing recovery past 6 months in domain-specific cognitive impairments, in parallel to known findings in motor recovery and aphasia.  The message that cognition does not necessarily always decline is likely to be an important one for stroke survivors to hear.

Diana Wong Ramons speaking at ESOC 2024

Mrs Diana Wong Ramos a former journalist and patient advocate from Portugal, had her stroke at the age of 34 and presented on Sex and intimacy following a stroke. She provided details of her recovery journey from the initial event when she was deemed by emergency services to be too young to have a stroke.  How in a split second everything in her life profoundly changed and she had to learn to do everything for herself again.  Her initial goal was to be able to hug her children again, then later thinking about how to rebuild an intimate relationship with her husband.  The stroke had impacted her body image, she described not feeling like a women or sexually attractive, she was unsure how to be intimate again and struggled to find the support she needed.  She challenged the audience to not ignore intimacy as an important aspect of reconnecting and feeling whole. She challenged clinicians to ask if people have questions about resuming sex after stroke.

Issues experienced by patients with stroke who require support up to 18 months after stroke because of ongoing or new symptoms were presented by Professor Torunn Askim, from Norwegian University of Science and Technology in her session on Life After STroke – Multimodal approaches to long-term follow up after stroke. “The LAST-long trial (Long term follow-up after stroke) is aiming to investigate the benefit of regular meetings with a community-based stroke coordinator, who is delivering a multimodal individualized intervention to prevent functional decline, for 18 months. Furthermore, the stroke coordinators use the LAST-long checklist as guide for a structured interview to assess risk-factors and shared decision making to agree on goals and action points for the next month. So far 301 participants have been included and the final follow-up assessment will be completed by September 2024.

Group of AHC professionals during ESOC 2024