Expert healthcare professionals and stroke researchers who participated in this modified Delphi survey reached consensus on the majority of design decisions for a monitoring and psychoeducational intervention addressing psychological changes to be implemented within the UK stroke care pathway. Participants agreed reviews should include a stroke-specific cognitive screen. While the intervention was originally conceptualised as a cognitive care pathway, participants also agreed the intervention should address post-stroke psychological changes, encompassing mood, anxiety, and fatigue. They agreed stroke survivors should be offered at least one review, regardless of their psychological presentation in hospital. They agreed on the importance of various psychoeducation topics, and formal and informal training for those conducting reviews. Consensus was not reached on the review mode (in person/remote options), offering reviews one-year post-discharge to patients without impairments detected in hospital, or including a dementia screen and/or neuropsychological assessment battery. Free-text responses highlighted a number of shared views, including the importance of onwards referral where clinically indicated. Alongside empirical evidence and psychological theory, stakeholder input from this study will inform the development of an intervention to address the ongoing and well-evidenced need for psychological support after stroke (16–18, 48).
Participants agreed that reviews of psychological changes after stroke should form a standard part of the UK stroke care pathway, with these reviews being offered to all stroke survivors, regardless of their presentation in hospital. The importance of reviewing psychological changes is indeed emphasised in UK clinical guidelines for stroke care (13) but audit and commissioning data indicate insufficient provision of longer term post-stroke psychological support across the UK (14, 49). Furthermore, and perhaps most concerningly, evidence suggests provision of psychological support in the months after stroke has been declining over recent years (14, 50), in spite of widespread calls to prioritise post-stroke psychological care provision (20, 21, 51). While interventions have been developed with the potential to address these gaps in post-stroke psychological care provision in the UK (26–28), they are generally limited by the substantial clinical expertise and time required to administer them. When identifying candidate intervention features to include in this modified Delphi survey, we held in mind the substantial constraints on community stroke services within the UK and expert stakeholder participants further reinforced the need to balance quality and efficiency of care provision. As a result, the monitoring and psychoeducational intervention that will be developed from this modified Delphi survey and other co-production activities (39, 41, 42) may have the potential to fill key gaps in post-stroke care provision, without overburdening services.
As with post-stroke cognitive impairment, the high prevalence of low mood, anxiety, and fatigue after stroke is well-evidenced. A recent systematic review and meta-analysis of 97 studies found the pooled prevalence of anxiety between one-five months after stroke to be 21% in studies using interviews, and 24% in studies using self-report scales (52), while the pooled prevalence of depression any time up to five-years post-stroke across 61 studies has been estimated to be 31% (53). Recognising the high prevalence of cognitive impairment, low mood, and anxiety after stroke, a recent priority setting exercise by the James Lind Alliance identified psychological changes and cognitive changes as the top two research priorities needing to be addressed to improve post-stroke rehabilitation and long-term care (21). In particular, the Priority Setting Partnership (54) made explicit the following question “What is the best way to assess for, understand the impacts of and track progression in all areas of cognition – including using standardised measures - across the stroke pathway; what and how can interventions and services involving multidisciplinary teams and families be made accessible, and how can information on these problems be provided?” (p.12) By providing expert consensus on the optimal care delivery model for monitoring psychological changes after stroke, the results of this modified Delphi survey directly address this top stroke research priority.
There was no consensus on whether reviews should include a dementia screen and/or neuropsychological assessment battery as a standard part of follow-up, which reflects an ongoing debate within the literature and clinical practice about the optimal approach for post-stroke cognitive screening and assessment (37). Proponents of post-stroke dementia screening have emphasised both within this survey and in previous research the increased risk of developing dementia after stroke and thus the urgent need to screen for it (55). Indeed, a recent meta-analysis reported that approximately 20% of stroke survivors experience clinically defined dementia one-year after stroke (56). However, as acknowledged by participants in this study, results on dementia screens like the Montreal Cognitive Assessment (MoCA: 57) and Mini-Mental State Examination (MMSE: 58) may be confounded by stroke-specific deficits and lack sensitivity (59, 60), leading to potential misinterpretation and misdiagnoses when administered and interpreted by individuals with limited expertise. With regards to neuropsychology assessments, while proponents of neuropsychology assessments emphasised the advantage of understanding cognitive profiles in detail to support rehabilitation, participants highlighted the substantial constraints on clinical services in the UK and argued that it would not be feasible to implement extensive neuropsychological testing within a standardised and widespread post-stroke psychological care pathway. In both cases, participants emphasised the importance of onwards referral to specialist services, such as memory clinics and neuropsychology services.
In terms of limitations, we note that the survey was designed and ethical approval was obtained prior to the publication of the latest revision of the National Clinical Guideline for Stroke in April 2023 (13), meaning that survey items were informed by the earlier 2016 guideline (61). Nevertheless, our results echo recommendations from the updated clinical guideline, as well as providing important clarification on some aspects of psychological care provision (e.g., importance of providing specific information about assessment results, potential trajectories, impact of psychological changes on activities of daily living, and signposting). A second limitation is that we only sought consensus on relatively broad intervention design decisions - for example, participants agreed that the intervention should include a stroke-specific cognitive screen, but we did not ask participants to advise on the optimal stroke-specific screening tool. We constrained the survey to broader design decisions to reduce participant burden and encourage participation.
In conclusion, this study developed expert consensus on the overarching design of a ‘first-line’ monitoring and psychoeducation intervention addressing post-stroke psychological changes to be integrated in the existing UK stroke care pathway. Future research will evaluate the extent to which the intervention has a clinically meaningful impact on patient outcomes. In the meantime, the recommendations outlined here may prove beneficial for informing local service improvements.