Authors' objectives: Stroke often affects recognition and interpretation of information from our senses, resulting in perceptual disorders. Evidence to inform treatment is unclear. To determine the breadth and effectiveness of interventions for stroke-related perceptual disorders and identify priority research questions. Perception is the synthesis and interpretation of information gathered through the senses: hearing, taste, touch, smell, visual and information on temperature, pressure, vibration and body position, known as somatosensation. Up to a fifth of stroke survivors experience perceptual disorders after stroke, limiting their ability to perceive and process sensory information and reducing their ability to take part in daily activities. To date, the effectiveness of perceptual disorder interventions after stroke is unclear. Clinical guidelines offer limited recommendations. Stroke survivors, carers and healthcare professionals have stated that improving research into perception is important to them. Further, it is important to systematically identify evidence gaps and future research priorities. We aimed to: Identify all published and unpublished research evaluating interventions for perceptual disorders after stroke, providing a comprehensive report on the scope and nature of the evidence to date and highlighting the research gaps identified. Synthesise and appraise the quality of randomised controlled trial (RCT) evidence of the effectiveness of perceptual disorder interventions after stroke. Understand the implications of our findings for stroke survivors and HCPs working in this area and to determine future research priorities.

Authors' results and conclusions: Scoping review We included 80 studies (n = 893): case studies (36/80) and randomised controlled trials (22/80). No stroke survivor or family stakeholder involvement was reported. Studies addressed visual (42.5%, 34/80), somatosensation (35%, 28/80), auditory (8.7%, 7/80) and tactile (7.5%, 6/80) perceptual disorders; some studies focused on ‘mixed perceptual disorders’ (6.2%, 5/80 such as taste–smell disorders). We identified 93 pharmacological, non-invasive brain stimulation or rehabilitation (restitution, substitution, compensation or mixed) interventions. Details were limited. Studies commonly measured perceptual (75%, 60/80), motor-sensorimotor (40%, 32/80) activities of daily living (22.5%, 18/80) or sensory function (15%, 12/80) outcomes. Evidence informing interventions for perceptual disorders after stroke is limited for all senses. This project was coproduced with people with lived experience of stroke and perceptual disorders (n = 5) and relevant multidisciplinary clinical expertise (n = 4). Working in partnership with the core research team, these groups informed the project throughout, agreeing definitions of perception, relevant outcome measures, clinical implications and priorities for future research. Scoping review Of 91,869 records screened, we included 80 studies (including 36 case reports; 22 RCTs) in the scoping review, most (64%) of which were published in the previous decade. Participants (n = 893) were predominately adults and male; five children were included. Studies generally had small sample sizes, with RCTs accounting for most participants (70.5%; 630/893). The perceptual disorders represented included visual (43%), somatosensory (35%), auditory (9%), tactile (8%) or ‘mixed’ disorders (5%) which included one study on taste–smell disorders. We identified 93 interventions including rehabilitation (84%), pharmacological (6.5%) and non-invasive brain stimulation (NIBS) interventions (7.5%); no surgical or assessment-based interventions were identified. Intervention details were limited. Outcome measures commonly included perceptual function (75%), motor/sensorimotor (40%), ADLs (23%) or sensation (15%). No data on discharge destination, health economic, feasibility, educational (children), psychological well-being and mental health, quality of life, or activity and participation were reported. Time points were typically immediately after the intervention (39%) or within 3 months follow-up with just 15% of studies capturing outcomes beyond that time point. Healthcare professionals lack high-quality evidence of effective interventions to inform their provision of advice, treatment and education of stroke survivors with perceptual disorders and their families. Evidence informing these research priority topic areas is urgently required.

Authors' recommendations: The evidence informing interventions for perceptual disorders after stroke is limited, and absent for smell, taste and tactile disorders. Future research should prioritise (1) exploration of the lived experience of people with stroke-related perceptual disorders, (2) improving assessments of stroke-related perceptual disorders, (3) exploring interventions in a way that reflects real-world needs, (4) exploring current clinical practices that address perceptual disorders following stroke and (5) establishing the prevalence of perceptual disorders after stroke.

Authors' methods: We undertook a scoping review and then Cochrane systematic review. Definitions, outcome prioritisation, data interpretation and research prioritisation were coproduced with people who had perceptual disorders post stroke and healthcare professionals. We systematically searched electronic databases (including MEDLINE, EMBASE, inception to August 2021) and grey literature. We included studies (any design) of interventions for people with hearing, smell, somatosensation, taste, touch or visual perception disorders following stroke. Abstracts and full texts were independently dual reviewed. Data were tabulated, synthesised narratively and mapped by availability, sense and interventions. Research quality was not evaluated. Our Cochrane review synthesised the randomised controlled trial data, evaluated risk of bias (including randomisation, blinding, reporting) and meta-analysed intervention comparisons (vs. controls or no treatment) using RevMan 5.4. We judged certainty of evidence using grading of recommendations, assessment, development and evaluation. Activities of daily living after treatment was our primary outcome. Extended activities of daily living, quality of life, mental health and psychological well-being perceptual functional and adverse event data were also extracted. Results are limited by the small number of studies identified and the small sample sizes, with a high proportion of single-participant studies. There was limited description of the perceptual disorders and intervention(s) evaluated. Few studies measured outcomes relating to functional impacts. There was limited investigation of hearing, smell, taste and touch perception disorders. Our project included a scoping review, the revision and expansion of a Cochrane systematic review and we worked with a Lived Experience Group and a Clinical Expert Group to co-create research recommendations and identify research priorities. Our scoping review of the literature was based on a systematic search of several electronic databases including MEDLINE, EMBASE and CINAHL (inception to August 2021), as well as searches of grey literature, contacting experts and forward citation tracking. We included studies of any design which explored interventions for stroke survivors with hearing, smell, somatosensation, taste, touch or visual perception disorders. Eligible abstracts and full texts were independently reviewed by two reviewers; data were extracted, tabulated and narratively synthesised. Data availability and outcome measures used were mapped. In keeping with scoping review methodology, we did not formally assess research quality. We updated a Cochrane systematic review, including RCTs of adult stroke survivors with perceptual disorders. We assessed the risk of bias, conducted meta-analyses to explore effectiveness of interventions and judged our confidence in the findings using grading quality of evidence and strength of recommendations (GRADE). Outcomes were measured using activities of daily living (ADLs) with extended activities of daily living (EADLs), quality of life, mental health, perceptual function and adverse events data also collated. Using structured involvement and priority setting approaches we worked in partnership with our Lived Experience and Clinical Expert Groups to agree clinical implications and to future research priorities. Despite large numbers of people experiencing one or more perceptual disorder after stroke, there is a striking lack of relevant research to inform interventions. What little has been reported is often based on a single participant or small sample sizes. There is limited description of the perceptual disorder, the intervention(s) evaluated and a focus on perception outcomes rather than measures that reflect the functional impacts described by the Lived Experience Group, for example ADLs. We also found evidence of under-researched subpopulations including children and people with hearing, taste and smell perceptual disorders. The project team, Lived Experience and Clinical Expert Groups are UK-based, and it is unclear whether our priorities (outlined below) capture the wider international picture.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hta/NIHR128829

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hta/WGJT3471

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/WGJT3471

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk