Exploring patients' experience using PROMs within routine post-discharge follow-up assessment after stroke: a mixed methods approach.

BACKGROUND: Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke. METHODS: In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs. RESULTS: In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2-96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2-51.6%) considered the PROMs useful for the consultation and most patients (87.3-96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation. CONCLUSIONS: Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future.

The influence of psychological factors and mood on the course of participation up to four years after stroke.

PURPOSE: (1) To explore the course of participation from two months up to four years after stroke, and (2) to examine if adaptive and maladaptive psychological factors and mood measured at two months after stroke are determinants of the course of participation during this period. MATERIALS AND METHODS: Prospective cohort study in which 369 individuals with stroke were assessed at stroke onset, two months, six months, one year, two years and three to four years after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) restrictions subscale was used to measure participation. Psychological factors were clustered into adaptive (proactive coping, self-efficacy, extraversion and optimism) and maladaptive (passive coping, neuroticism and pessimism) psychological factors. The Hospital Anxiety and Depression Scale was used to assess mood. RESULTS: Although improvements in participation were observed up to one year after stroke, considerable long-term restrictions in social and physical domains persisted. More mood problems and less adaptive psychological factors were independent determinants of worse participation up to four years after stroke. CONCLUSIONS: Participation improves in the first 12 months after stroke and stabilizes afterwards. Mood problems and less adaptive psychological factors negatively influence the course of participation over time up to four years after stroke.Implications for rehabilitationFollow-up assessments after stroke should not only focus on cognitive and motor impairment, but also encompass screening on mood problems and adaptive psychological factors.Implementation of a routine follow-up assessment one year after stroke can be beneficial as restrictions in participation are unlikely to diminish spontaneously from then onwards.

Which approach to measure cognitive functioning should be preferred when exploring the association between cognitive functioning and participation after stroke?

A variety of approaches are currently used to explore the relationship between cognitive functioning and participation after stroke. We aimed to gain insight into the preferred approach to measure cognitive functioning when exploring the association between cognitive functioning and participation in the long term after stroke. In this inception cohort study 128 individuals with stroke participated and were assessed at a single time point three to four years after the event. Participation was measured using the Restrictions subscale of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Subjective cognitive complaints were assessed using the Cognition subscale of the Checklist for Cognitive and Emotional Consequences (CLCE-24-C). Objective cognitive performance was measured using the Montreal Cognitive Assessment (MoCA) and a neuropsychological test battery (NTB) testing multiple cognitive domains. Participation showed a strong correlation (r = 0.51) with the CLCE-24-C and moderate correlations with the domains of visuospatial perception (r = 0.37) and mental speed (r = 0.36). Backward linear regression analyses showed that participation restrictions were best explained by the combination of the CLCE-24-C and a test for visuospatial perception (R2 = 0.31). Our findings suggest the use of a combination of subjective cognitive complaints and objective cognitive performance to explore the relationship between cognitive functioning and participation after stroke.

Validity of an enhanced EQ-5D-5L measure with an added cognitive dimension in patients with stroke.

OBJECTIVE: The 5-level EuroQoL (EQ-5D-5L) is a patient-reported outcome measure frequently used in stroke research. However, it does not assess the cognitive problems many patients with stroke experience. The aim of this article is to compare the content validity, internal consistency and discriminative ability of the EQ-5D-5L with and without an additional cognitive domain (EQ-5D-5L+C), administered three months post-stroke. DESIGN: Cross-sectional study. SETTING: Six general hospitals in the Netherlands. SUBJECTS: In all, 360 individuals with stroke three months after the event. INTERVENTIONS: Not applicable. MAIN MEASURES: The modified Rankin Scale and EQ-5D-5L+C were administered in telephone interviews three months post-stroke. RESULTS: A total of 360 patients with stroke were included. Mean age was 68.8 years (standard deviation (SD) = 11.7), 143 (40%) were female, 334 (93%) had had an ischemic stroke, 165 (46%) had a National Institutes of Health Stroke Scale (NIHSS) score ⩽ 4 at presentation and the Barthel Index was 17.2 (SD = 4) four days post-stroke. Cognitive problems were reported by 199 (55%) patients three months post-stroke. Internal consistencies of the EQ-5D-5L and EQ-5D-5L+C were 0.75 and 0.77, respectively. Adding a cognitive domain resulted in a decrease of the ceiling effect from 22% to 14%. Both EQ-5D-5L and EQ-5D-5L+C showed good discriminative ability, but differences between patients with different modified Rankin Scale scores and with/without reported decrease in health and daily activities were slightly larger with the EQ-5D-5L+C compared to the EQ-5D-5L. CONCLUSIONS: The EQ-5D-5L+C, which includes a cognitive domain that is highly significant for stroke patients, showed increased content validity and good discriminative ability, without losing internal consistency.